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Carer support

The following resources address services/interventions intended to support carers.

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Family-centred care for children and young people with cerebral palsy: results from an Italian multicenter observational study

Background: Family‐centred care (FCC) is recognized as the model of best practice for the provision of services for children who have physical disabilities and their families.

Objective: To assess the overall perception of FCC provided in an Italian network of 17 rehabilitation services, as perceived by parents of children with cerebral palsy and professionals, and to explore whether children, families, service providers and service‐related characteristics influence parent satisfaction regarding service provision in an FCC practice.

Methods: The Measure of Processes of Care (MPOC‐20) for parents/caregivers and the Measure of Processes of Care for Service Providers (MPOC‐SP) for healthcare providers were used. For the purposes of the study, an ad hoc information form was developed to collect information concerning children, families, service providers and services.

Results: A total of 382 parents/caregivers and 269 healthcare providers completed the MPOC questionnaires. Parents and service providers both identified the domains for enabling partnerships and interpersonal sensitivity as a strength, while the domain relating to general information was always scored the lowest. An advanced maternal age, being a single parent, being unemployed and having lower socio‐economic status were factors identified as individually predictive of lower FCC scores on the MPOC‐20. Higher intensity treatment, inpatient services, primary healthcare settings and settings identified with limited financial resources and reduced space/time for each family were other variables significantly associated with less favourable MPOC‐20 ratings.

Conclusions: The perception of FCC provided was fairly positive, with some areas of improvement, such as the domain of provision of information. Professionals should, therefore, provide better communication and take more time in giving information and attention to parents. Potential sources of variation in parent perceptions of FCC based on family characteristics and the organization of services highlight the importance the need to support services through the provision of greater financial and human resources.

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Discovering dad: paternal roles, responsibilities, and support needs as defined by fathers of children with complex cardiac conditions perioperatively

Background: Understanding perceptions of family caregivers' roles and responsibilities regarding their child with complex cardiac needs has potential to help care teams better support parents. Paternal experience has been under-explored in pediatric cardiac cohorts.;

Methods: Ten fathers of children undergoing cardiac surgery completed quantitative surveys on their knowledge needs and preferred format of communication. In face-to-face recorded interviews, they responded to open-ended questions about the definition of being a good father to a child with a complex cardiac condition, perceived paternal responsibilities, personal growth as a parent to a child with a complex heart condition, support needs, and recommendations to medical staff for paternal inclusion. Semantic content analysis was utilised. The study reports strictly followed COnsolidated criteria for REporting Qualitative research guidelines.

Results: The fathers reported high preference for knowledge about the child's heart condition, communication about the treatment plan, and desire for inclusion in the care of their child. Paternal role was defined thematically as: providing a supportive presence, being there, offering bonded insight, serving as strong provider, and acting as an informed advocate. The fathers revealed that their responsibilities sometimes conflicted as they strove to serve as an emotional and economic stabiliser for their family, while also wanting to be foundationally present for their child perioperatively.

Conclusion: This study provides insight into paternal experience and strategies for paternal inclusion. This summary of the self-defined experience of the fathers of pediatric cardiac patients offers constructive and specific advice for medical teams.

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Case-Based Insights: Arab Muslim Mothers' Experiences of Managing a Child Newly Diagnosed With Type 1 Diabetes Mellitus

Mothers frequently fulfill the role of primary caregiver for children diagnosed with type 1 diabetes mellitus (T1DM). A T1DM diagnosis has a significant impact on the child and the wider family unit. The objective is to develop understanding of mothers' experiences caring for children diagnosed with T1DM in the cultural context of the Middle East to facilitate enhanced health service provision and support. This study used a qualitative design. Data were collected in individual semistructured interviews. Participants were mothers of Arabic descent and Muslim belief who had a child diagnosed with T1DM within the last 12 months. All mothers were registered at the health service where this research was conducted and resident in the United Arab Emirates at the time of this study. COREQ guidelines informed reporting of the research and findings. Participating mothers described initial reactions of shock and disbelief, followed by transition to near ordinary and near normal ( 85% normal ) family functioning. Family, culture, and faith emerged as critical supports in the whirlwind daily challenge of balancing the multiple demands and competing needs of the newly diagnosed child and the broader family. This study is the first of its kind from countries comprising the Gulf Cooperation Council. The findings provide insight into the challenges and support needs of mothers caring for children newly diagnosed with T1DM in an Arab Muslim context. The findings also provide a basis for enhancing health service support and suggest themes to inform further research.

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Young adult carers—Transitioning to adulthood or to adult caring?

Social care policy in the UK emphasises the importance of supporting young adult carers to make positive transitions to adulthood. This paper reports findings from a qualitative study which explored whether young adult carers' services in England are facilitating transitions. The research found that young adult carers' services were endeavouring to raise young adult carers' aspirations and achieve personalised outcomes, in line with the Care Act 2014. However, formal provision for young adult carers in England, in the main, designates them as adult carers. Yet, young adult carers need to have sufficient opportunities for making decisions about their futures. Strategic funding and development of services are required to enable the Act's vision to be achieved.

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Enteral feeding and its impact on family mealtime routines for caregivers of children with cerebral palsy: A mixed method study

Background/aim: Enteral feedings are part of the daily mealtime experience for many caregivers of children with cerebral palsy. The scope of occupational therapy practice incorporates multiple aspects of the enteral feeding process. Yet, the research in this area is very limited. The purpose of this study was to provide practitioners with better understanding of the impact enteral feedings of children with cerebral palsy have on family mealtime routines.

Methods: Using a complimentary mixed method approach, data were obtained through an online survey containing the Satisfaction Questionnaire with Gastrostomy Feeding (SAGA-8) and supplementary questions, and qualitative semi-structured phone interviews. Participants were caregivers of children with cerebral palsy who receive their primary nutrition through a gastrostomy tube.

Results: This study's cohort consisted of n = 36, SAGA-8, and n = 6 in-depth interviews. The mean age of children of was 9.4 (6.94 SD) with a mean age of 3.4 (5.35 SD) when enteral feeding was introduced. While families' overall situations positively changed after the gastronomy tube placement, environmental barriers and length of feeding time continued to present a challenge to mealtime routines. The mixed methods data analysis revealed that successful adjustment to having a child with a gastronomy tube and problem solving are closely linked and a consistent part of mealtime experience.

Conclusion: Findings highlighted the necessity of comprehensive support from health professionals in achieving positive mealtime experience. Themes in this study indicated that caregivers would benefit from a professional with knowledge in the development and integration of rituals and routines to support positive outcomes. 

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Lived experience of having a child with stroke: A qualitative study

Objective: To assess the lived experience of parents whose child has suffered a stroke.

Methods: A qualitative study model was chosen, comprising in-depth interviews with parents separately or altogether. A semi-structured interview guide was used. Interviews were audio-recorded, transcribed verbatim and analysed using constant comparison and content analysis. Participant checking was performed. Thirteen families of children aged 1 month to 17 years, having suffered ischaemic or haemorrhagic arterial stroke within one to five years, were recruited. Interviews were conducted within home setting.

Results: After fourteen interviews, data saturation was met and six main narrative themes were identified, underlining a common path of stroke lived experience: brutality of diagnosis, lack of information regarding disease condition, feeling of abandonment after discharge from hospital, focus on functional recovery, late awareness of cognitive disorders, and need for psychological support and family adaptation.

Conclusion: This is the first qualitative study reporting lived experience of childhood stroke caregivers. In line with other qualitative studies exploring the feelings of parents coping with severe neurological conditions of childhood, our results advocate the need for evaluation of family centred health interventions. 

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Family therapy for autism spectrum disorders

Background: Autism spectrum disorders (ASDs) are characterised by impairments in communication and reciprocal social interaction. These impairments can impact on relationships with family members, augment stress and frustration, and contribute to behaviours that can be described as challenging. Family members of individuals with ASD can experience high rates of carer stress and burden, and poor parental efficacy. While there is evidence to suggest that individuals with ASD and family members derive benefit from psychological interventions designed to reduce stress and mental health morbidity, and enhance coping, most studies to date have targeted the needs of either individuals with ASD, or family members. We wanted to examine whether family (systemic) therapy, aimed at enhancing communication, relationships or coping, is effective for individuals with ASD and their wider family network.

Objectives: To evaluate the clinical effectiveness and acceptability of family therapy as a treatment to enhance communication or coping for individuals with ASD and their family members. If possible, we will also seek to establish the economic costs associated with family therapy for this clinical population.; Search Methods: On 16 January 2017 we searched CENTRAL, MEDLINE, Embase, 10 other databases and three trials registers. We also handsearched reference lists of existing systematic reviews and contacted study authors in the field.; Selection Criteria: Randomised controlled trials (RCTs) and quasi-RCTs investigating the effectiveness of family therapy for young people or adults with ASD or family members, or both, delivered via any modality and for an unspecified duration, compared with either standard care, a wait-list control, or an active intervention such as an alternative type of psychological therapy.

Data Collection and Analysis: Two authors independently screened each title and abstract and all full-text reports retrieved. To enhance rigour, 25% of these were independently screened by a third author.; Main Results: The search yielded 4809 records. Of these, we retrieved 37 full-text reports for further scrutiny, which we subsequently excluded as they did not meet the review inclusion criteria, and identified one study awaiting classification.

Authors' Conclusions: Few studies have examined the effectiveness of family therapy for ASD, and none of these are RCTs. Further research studies employing methodologically robust trial designs are needed to establish whether family therapy interventions are clinically beneficial for enhancing communication, strengthening relationships, augmenting coping and reducing mental health morbidity for individuals with ASD and family members.

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“It goes against the grain”: A qualitative study of the experiences of parents’ administering distressing health‐care procedures for their child at home

Background: Parents caring for children with complex and long‐term conditions at home take on responsibility for technical health‐care procedures that may cause their child distress. Little evidence exists about parents’ experience of this specific aspect of their caring role.

Aims: To explore and understand parents’ experiences of administering distressing health‐care procedures as part of caring for their child at home.

Design: An explorative qualitative study.MethodsA purposive sample of parents who were currently carrying out, or had previously carried out, health‐care procedures they thought their child found distressing was recruited. Data were collected using in‐depth interviews and analysed thematically.

Findings: Administering these procedures was not just a clinical task. That the procedures caused distress for the child meant there were additional issues to consider and address. A major issue for parents was being able to prevent or minimize their child's distress, which in turn was closely linked to parents’ own emotional discomfort in the situation. Parents also had to manage their child's physical and verbal resistance, their own emotional discomfort during the procedure, and the presence and reaction of siblings in the home. The types of support that were valued by parents included advice about managing their child's distress and resistance, occasional assistance with procedures, addressing the emotional aspects of the role, and adequate training and on‐going supervision.

Conclusion: The “added” challenges of assuming this responsibility have implications for the support of parents caring for ill children at home.

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A study of health seeking behavior in families of children with Type 1 diabetes

Objectives: Importance of HSB is increasing being recognized in understanding patient compliance, adequacy of followup, and seeking of alternative therapies (AT), which impact glycemic control. We looked at HSB of T1D caregivers.

Methods: 56 families: Child's T1D duration >1 y, were interviewed: 49 coming to a private clinic, 7 in government hospitals. SES was low in 20, upper/middle ("non-poor") in 36.

Results: After diagnosis, 24/56 (43%) had consulted 2-10 (mean 3.3) doctors - 6/20 (30%) poor families, 18/ 36 (50%) non-poor. Conversely 11: 7 poor (35%) and 4/36 (11%) non-poor families consulted no doctor for 1-3 y (mean 1.25 y) after diagnosis. easons given: "nothing new to learn, can manage dose adjustment ourselves": 8; "did not know we were supposed to follow up": 2; "shifted out of Delhi, couldn't find pediatric endocrinologist": 1. During this gap, there were 3 admissions for hyperglycemia; and 5 episodes of severe hypoglycemia managed at home. AT was tried by 35/56 (62%: Ayurveda by 8, Homeopathy 10, Naturopathy/Home remedies 17 [bitter gourd, neem juice, fenugreek, jamun]): 40% AT triers were poor, 60% non-poor. Reasons given: Own beliefs, experiences of other diabetics, television, internet, social groups, magazines and seminars. Reasons for choosing medical provider: Doctor treating or referred to during admission: 26; own financial status: 11, distance: 7, their experience and level of satisfaction with doctor: 12. Of clinic patients, 25/49 have regular followup, 16 irregular, and 8 had no visits in the past year. SES-wise, 18/36 (50%) non-poor, 7/20 (35%) poor families have regular followup.

Conclusions: Doctor shopping, erratic followup, trying AT, are common problems, and need to be proactively discussed with families to find solutions. HSB is only partly determined by SES: Non-poor families did somewhat more doctor shopping; poor families had more irregular followup.

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Parents Need More Support: A Qualitative Study of the Experiences of Australian Parents Who Are Waiting for Surgical Intervention for Their Children With Otitis Media

Objective: To explore the experiences, expectations, and motivations of parents/caregivers of children with otitis media who were booked to undergo tympanostomy tube insertion.

Method: A cross-sectional cohort study was conducted using semistructured interviews with 39 parents. Interviews were conducted via telephone and analyzed for key themes.

Results: Three themes emerged that incorporated a range of subthemes: (1) the impact of the child's underlying condition on the family, (2) the cues and prompts that influenced parents to seek intervention, and (3) the parents' expectations of the health-care system. The child's otitis media disrupted the day-to-day functioning of the family and the child's well-being, but despite this, the families found ways to adapt and cope. Parents were influenced by their friends, family, and medical practitioners when making treatment decisions and had differing expectations of the health-care system.

Conclusion: Parents need support during their child's illness to help with pressures placed on the family and also in making health-care decisions for their child. Clinicians should consider these issues when discussing treatment options with parents. (© The Author(s) 2019.)

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Parents’ and carers’ experiences of transition and aftercare following a child’s discharge from a paediatric intensive care unit to an in-patient ward setting: A qualitative systematic review

Objectives: To explore parents’ experiences of transition and aftercare following their child’s discharge from a paediatric intensive care unit to an in-patient ward.

Methods: A qualitative systematic review was conducted. Electronic databases CINAHL, MEDLINE, EMBASE, Psych INFO, and ASSIA were searched for qualitative studies with no date limits imposed. Methodological quality was assessed using the JBI QARI standardised critical appraisal instrument. Data were extracted into a standardised data extraction tool. Findings were pooled using a meta-aggregative approach.

Results: Four studies were included in the final review that included a total of 95 participants. Forty-nine findings were extracted and through an iterative process resulting in four synthesised findings being developed. These included: (1) Dynamic emotional response pre, peri and post-transfer; (2) Involvement in care absent but fundamental to functioning; (3) Changes in care delivery and environment provoking adverse emotions and (4) Transition as a physical, emotional and social balancing act.

Conclusion: Transitioning from the paediatric intensive care unit to an in-patient ward can be a challenging time for parents, exposing them to a turbulent emotional and social status, and depleting their personal resources. Parents are aware of differences in the organisation and delivery of care between clinical areas which can compound the adversity experienced. Health professionals need to provide targeted support in order to mitigate these negative emotional, physical and social effects experienced.

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Challenging behavour and learning disabilities: Prevention and interventions for children with learning disabilities whose behavour challenges: NICE guideline 2015

This guideline covers interventions and support for children, young people and adults with a learning disability and behaviour that challenges. It highlights the importance of understanding the cause of behaviour that challenges, and performing thorough assessments so that steps can be taken to help people change their behaviour and improve their quality of life. The guideline also covers support and intervention for family members or carers.

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Improving the Readability of Pediatric Hospital Medicine Discharge Instructions

Background: Readable discharge instructions may help caregivers understand and implement care plans following hospitalization. Many caregivers of hospitalized children, however, have limited literacy. We aimed to increase the percentage of discharge instructions written at 7th grade level or lower for hospital medicine patients from 13% to 80% in 6 months.

Methods: Quality improvement efforts targeted a 42-bed unit at the community satellite of our large, urban academic hospital. A multidisciplinary team of physicians, nurses, and parents focused on key drivers: family engagement in discharge process, standardization of discharge instructions, staff engagement in discharge preparedness, and audit and feedback of data. Improvement cycles included 1) education and implementation of a general discharge instruction template in the electronic health record (EHR); 2) visible reminders and tips for writing readable discharge instructions; 3) implementation of disease-specific discharge instruction templates in the EHR; and 4) individualized feedback to staff on readability and content of their written discharge instructions. Instructions were individually scored for readability using an online platform. An annotated control chart assessed the impact of interventions over time.

Results: Through sequential interventions over 6 months, the percentage of discharge instructions written at 7th grade or lower readability level increased from 13% to 98% and has been sustained for 4 months. The reliable use of the EHR templates was associated with our largest improvements.

Conclusion: Use of standardized discharge instruction templates and rapid feedback to staff improved the readability of instructions. Next steps include adaptation and spread to other patient populations.

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The effect of the Hambisela programme on stress levels and quality of life of primary caregivers of children with cerebral palsy: A pilot study

Background: Caregivers of children with cerebral palsy (CP) are at risk of having high stress levels and poor quality of life (QOL) which could have a detrimental effect on themselves and their children. Taking caregivers' well-being into consideration is therefore important when providing rehabilitation to children with CP. Interventions to mediate primary caregiver stress and QOL using an educational tool have not been tested in this population in South Africa. Objectives: The aim of this study was to determine the effect of a group-based educational intervention, Hambisela, on stress levels and QOL of primary caregivers of children with CP in Mamelodi, a township in Gauteng, South Africa.

Method: Eighteen primary caregivers of children with CP participated in a quasi-experimental pretest–post-test pilot study. Hambisela, a group-based educational intervention, was carried out once a week over 8 consecutive weeks. Caregiver stress and QOL were assessed before and after the intervention using the Parenting Stress Index-Short Form (PSI-SF) and the Paediatric Quality of Life-Family Impact Module (PedsQLTM-FIM). Sociodemographic information was assessed using a demographic questionnaire. The Gross Motor Function Classification System (GMFCS) was used to assess the gross motor level of severity of CP in the children.

Results: Data were collected for 18 participants at baseline and 16 participants at follow-up. At baseline, 14 (87.5%) participants had clinically significant stress which reduced to 11 (68.8%) at follow-up. There was no significant change in primary caregiver's stress levels (p = 0.72) and QOL (p = 0.85) after the Hambisela programme. Higher levels of education were moderately associated with lower levels of primary caregiver stress (r = −0.50; p = 0.03).

Conclusion: Most primary caregivers in this pilot study suffered from clinically significant stress levels. Hambisela, as an educational intervention, was not effective in reducing the stress or improving the QOL in these primary caregivers of children with CP. Future studies with a larger sample size are needed to investigate the high stress levels of primary caregivers of children with CP. Clinical implications: Rehabilitation services for children with disabilities should include assessments to identify caregivers with high stress levels. Holistic management programmes should also include care for the carers. 

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Parental experiences with a paediatric palliative care team: A qualitative study

Background: Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and quality of care and to support the child and the family. Yet, little is known about how parents experience such multidisciplinary teams.

Aim: To obtain insight into the support provided by a new paediatric palliative care team from the parents' perspective.Design:An interpretative qualitative interview study using thematic analysis was performed.

Setting/participants: A total of 47 single or repeated interviews were undertaken with 42 parents of 24 children supported by a multidisciplinary paediatric palliative care team located at a university children's hospital. The children suffered from malignant or non-malignant diseases.

Results: In advance, parents had limited expectations of the paediatric palliative care team. Some had difficulty accepting the need for palliative care for their child. Once parents experienced what the team achieved for their child and family, they valued the team's involvement. Valuable elements were as follows: (1) process-related aspects such as continuity, coordination of care, and providing one reliable point of contact; (2) practical support; and (3) the team members' sensitive and reliable attitude. As a point of improvement, parents suggested more concrete clarification upfront of the content of the team's support.

Conclusion: Parents feel supported by the paediatric palliative care team. The three elements valued by parents probably form the structure that underlies quality of paediatric palliative care. New teams should cover these three valuable elements.

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Supporting family engagement with child and adolescent mental health services: A scoping review

A key challenge facing the mental health field is connecting children and families to services when symptoms first appear. Multiple barriers inhibit timely access to treatment, and interventions to resolve barriers to care are not common among health and social care organisations. To address this research-to-practice gap this study undertook a scoping review of the empirical literature aimed at identifying key factors in the social ecology of families which influence family engagement with child and adolescent mental health services, then identifying and describing models of intervention designed to help facilitate access to care. Forty studies published between 1 January 2000 and 28 February 2019 were reviewed. Key factors associated with child and adolescent mental health service engagement included family attitudes towards mental illness and help seeking, the flexibility and availability of needed services, community attitudes and stigma surrounding mental illness and mental health treatment, and the degree of coordination and integration across systems of health and social care. Models of intervention to facilitate engagement with mental health services included family outreach, telephone and digital health strategies, and integrated care approaches. Empirical support is strongest for family outreach and integrated care, although telephone and digital health strategies are underexplored with children and families and a potentially promising avenue for future research. To support family engagement with child and adolescent mental health services health and social care organisations should be prepared to identify barriers in their local practice settings and integrate efficacious engagement approaches into their continuum of available services. 

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Perceived self-efficacy in parents of adolescents and adults with autism spectrum disorder

Many parents of adolescents and adults with autism spectrum disorder experience difficulty accessing appropriate services for their children, and may report low levels of parent self-efficacy. In an effort to identify the factors that contribute to the difficulties these families face, this study examined the role of demographic, systemic, and clinical need variables as they relate to parents’ experience of self-efficacy. Participants included 324 parents of individuals with autism spectrum disorder, 12–25 years of age. Results suggest that parent self-efficacy is related to a number of variables and not simply a child’s clinical situation, including child age, parent immigrant status, barriers to service access, and caregiver burden. Given the crucial role that parents often play in the lives of individuals with autism spectrum disorder across the lifespan, it is important that service providers support the efforts of parents who provide and access care for their children.

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Medical care experiences of children with autism and their parents: A scoping review

Children with autism spectrum disorder (ASD) and their families may benefit from the provision of additional supports in health care settings, particularly when preparing for and attending medical appointments. This review examined literature that describes experiences in medical care settings from the perspective of patients under age 18 with ASD and their caregivers. A scoping review was conducted to examine the experiences of children with ASD and their families in medical care settings. Twenty-nine studies meeting inclusion criteria were identified and reviewed. The review indicated a number of challenges (e.g., parent-reported problems in parent-provider communication and overwhelming environments) as well as factors that facilitate positive experiences (e.g., providing positive reinforcement and explaining exam steps) during medical appointments. Children with ASD and their families are faced with many challenges while receiving care in medical settings. The present review identified many challenges families face, as well as facilitators of positive experiences. Understanding the unique experiences of patients with ASD and their parents will help to improve experiences in medical care settings for children, caregivers, and health care providers. 

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Lessons learned from a blended telephone/e-health platform for caregivers in promoting physical activity and nutrition in children with a mobility disability

Background: Children with physical disabilities report higher rates of sedentary lifestyle and unhealthy dietary patterns than non-disabled peers. These behaviors can increase comorbidities, caregiver burden, and healthcare costs. Innovative interventions are needed to assist caregivers of children with physical disabilities improve health behaviors.

Objective: /Hypothesis: The purpose of this pilot study was to test the usability and preliminary efficacy of an e-health and telecoaching intervention compared to telecoaching alone.

Methods: Parent/child dyads (n = 65) were randomized into either the e-health and telephone group (e-HT) or the telephone only group (TO). All participants received regular calls from a telecoach, and the e-HT group received access to a website with personalized weekly goals for diet and physical activity, and access to resources to meet these goals. At the conclusion of the intervention, participants in the e-HT group were asked to complete a semi-structured interview to discuss the usability of the e-health platform.

Results: Fifty of the 65 randomized dyads (77%) completed all baseline measures and had at least one intervention call. Forty families (80% of those that started the intervention) completed the study (50% spina bifida, 24% mobility limitation, diagnosis not reported). Age of the children ranged from 6 to 17 years old. Both groups had high adherence to scheduled phone calls (e-HT (n = 17): 81%, TO (n = 23): 86%); however no significant differences in dietary intake or physical activity were seen within or between groups. Primary themes to emerge from qualitative interviewers were: the platform should target children rather than parents, parents valued the calls more than the website, and schools need to be involved in interventions.

Conclusions: E-health interventions are a promising way to promote healthy behaviors in children with physical disability, but technology must be balanced with ease of use for parents while also engaging the child. 

Implementing Multi-Family Therapy Within a Community Eating Disorder Service for Children and Young People

Eating disorders are serious mental health conditions that commonly begin in adolescence. Multi-family therapy (MFT) is recommended for young people with anorexia, but to date the majority of research on the effectiveness of this intervention has been conducted in highly specialist eating disorder (ED) services. In England there is a national transformation program that aims to develop specialist community ED services for children and young people. The current study aimed to explore whether MFT can be effectively implemented in a newly developed community ED service in the Southwest of England. Following one pilot MFT group, focus groups were conducted with caregivers and MFT facilitators to qualitatively explore how they experienced MFT. Results showed that MFT is valued by both service users and clinicians in community ED settings, but there are challenges associated with providing MFT in this context. Guidance for meeting these challenges is provided. 

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Meanings assigned by families about children's chronic disease diagnosis

Objectives: to understand the meanings assigned by family caregivers about children's chronic disease diagnosis

Methods: qualitative study, which used as theoretical framework the Symbolic Interactionism, and methodological, the Grounded Theory. It was held in a pediatric unit in Southern Brazil, in 2016, through interviews submitted to open and axial analysis, with the participation of 20 family caregivers of hospitalized children.

Results: relatives, interacting with the nursing/health staff, perceive children's disease at birth. They are diagnosed with chronic disease by the physician and deny it. Subsequently, they accept and seek information on care.

Conclusions: the results pointed out the stages that relatives experience by assigning meanings to about children's chronic disease diagnosis. These meanings provide subsidies for nurses' actions, which need to be aware of children's and family's needs in order to offer comprehensive and humanized care.

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Evaluating the effectiveness of a family empowerment program on family function and pulmonary function of children with asthma: A randomized control trial

Empowerment can be an effective strategy for changing an individual's health behaviours. However, how to empower whole families to manage their children's asthma is a challenge that requires innovative nursing intervention based on family-centred care. To evaluate the effectiveness of a family empowerment program on family function and pulmonary function of children with asthma compared to those receiving traditional self-management only. A randomized control trial. Sixty-five families were recruited from one asthma clinic in a medical centre in Taiwan. After random assignment, 34 families in the experimental group received the family empowerment program consisting of four counselling dialogues with the child and its family. We empowered the family caregiver's ability to manage their child's asthma problems through finding the problems in the family, discovery and discussion about the way to solve problems, and enabling the family's cooperation and asthma management. The other 31 families received the traditional care in asthma clinics. The Parental Stress Index and Family Environment Scale of family caregivers, and pulmonary function, and asthma signs of children with asthma were collected at pre-test, 3-month post-test, and one-year follow-up. We utilized the linear mixed model in SPSS (18.0) to analyze the effects between groups, across time, and the interaction between group and time. The family empowerment program decreased parental stress (F = 13.993, p < .0001) and increased family function (cohesion, expression, conflict solving, and independence) (F = 19.848, p < .0001). Children in the experimental group had better pulmonary expiratory flow (PEF) (F = 26.483, p < .0001) and forced expiratory volume in first second (FEV1) (F = 7.381, p = .001) than children in the comparison group; however, no significant change in forced expiratory volume in first second (FEV1)/forced vital capacity (FVC) was found between the two groups. Sleep problems did not show significant changes but cough, wheezing, and dyspnoea were significantly reduced by family caregiver's observations. We empowered families by listening, dialogues, reflection, and taking action based on Freire's empowerment theory. Nurses could initiate the families' life changes and assist children to solve the problems by themselves, which could yield positive health outcomes.

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Protocol for 'Resilient Caregivers': a randomised trial of a resilience-based intervention for psychologically distressed partner caregivers of patients with cancer

Background: Intimate partners of patients with cancer often experience significant distress, but there is a lack of psychological interventions that specifically target this population. 'Resilient Caregivers' is a novel resilience-based intervention for distressed partner cancer caregivers. The intervention was developed according to a resilience framework focusing on meta-reflective skills, coping strategies and value clarification. Objectives: The aim of this study is to evaluate the effectiveness of this intervention in a randomised trial. Methods and analysis Eighty participants will be invited through the Oncology Department at Herlev Hospital, Denmark and randomised to either the intervention or usual care. Methods: Participants are eligible if they are partners (married or unmarried) of patients diagnosed with cancer and experience distress (>4 on the distress thermometer). 'Resilient Caregivers' consists of seven manualised group sessions (2.5 hours each), focusing on resilience in relation to being a partner caregiver of a patient with cancer. The primary outcome is symptoms of anxiety, while secondary outcomes include distress, depression, quality of life, sleep quality and resilience. Data will be collected at baseline, 3, 6 and 12 months follow-up using validated scales, and analysed using mixed models for repeated measures. Ethics and dissemination: This study will follow the ethical principles in the Declaration of Helsinki and has been reviewed by the Ethics Committee of the Capital Region of Denmark (Journal no. 18055373). Written informed consent will be obtained from all participants. Results will be reported through scientific peer-reviewed journals and relevant conferences.

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Process Evaluation of Internet-Based Cognitive Behavioral Therapy Intervention for Informal Caregivers

Background: Informal caregivers are individuals who provide care for ill, frail, or otherwise dependent family members, siblings, or friends. Due to the caregiving demands, informal caregivers are known to experience negative mental health symptoms, such as stress or anxiety. Interventions based on Internet-based Cognitive Behavioral Therapy (ICBT) principles have been previously found to be effective for different populations and could also be considered as a plausible support option for informal caregivers. However, findings regarding effectiveness alone might not be sufficient for informing about the overall feasibility of the intervention. Objective: The aim of this process evaluation study was to evaluate the feasibility of a previously developed ICBT intervention for informal caregivers in Lithuania. More specifically, we evaluated the suitability of the intervention in relation to its content and delivery mode. Methods: Two studies were conducted. Study 1 consisted of participant evaluations of an 8-week, 8-module long therapist supported ICBT intervention. Evaluations for the Study 1 were retrieved from previously unused data, obtained from pilot testing of the intervention in which 63 informal caregivers took part. The evaluations contained of qualitative data (participant comments), as well as quantitative data (evaluations of each of the sessions). The Study 2 was an online stakeholder focus-group discussion conducted via Zoom. Eight stakeholders took part in the discussion, among whom there were social workers, medical professionals as well as individuals with caregiving experience themselves. Data were analyzed using descriptive statistics, thematic analysis, and data coding. Results: Results of the Study 1 showed that most of the pilot randomized controlled trial participants evaluated content and format of the intervention positively. These results were complemented by the findings in the Study 2, in which stakeholders evaluated the intervention as suitable and promising. In addition, stakeholders made certain suggestions for improving the intervention's usability for the informal caregivers. This included improving the instructions, providing with more guidance, and considering personalization options. Conclusion: The process evaluation helped to evaluate the feasibility of the ICBT intervention for informal caregivers in Lithuania from the two perspectives: users and stakeholders. Our findings suggest that the intervention is suitable for the target population. 

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Prevalence and factors associated with psychological distress among family caregivers: A cross‐sectional study

Purpose: This study was aimed to examine the prevalence and factors associated with psychological distress among Saudi family caregivers. Design and Methods: This was a cross‐sectional, descriptive correlational study conducted on 163 participants. The Kessler Psychological Distress Scale‐6 was used to collect data. Bivariate and multivariate analyses were run in SPSS. Findings: Results indicated that psychological distress was significantly associated with employment status, education level, monthly money spent on caring, time spent on caregiving, and chronic disease type variables. Practice Implications: Implementing effective programs to raise family caregivers' understanding of psychological distress and improve their engagement in treatment is important.

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Predictors of health service use by family caregivers of persons with multimorbidity

Background: Informal caregivers of patients with multiple chronic conditions are socially good, promoting the sustainability of a large part of home care provision. However, this very demanding activity causes health problems that increase their own need for health services. This study analyses the use of health services by informal carers, comparing it with the use made by the general population with similar characteristics. Methodology: Cross‐sectional analytical study carried out in the Malaga‐Valle Guadalhorce Primary Health Care District (Spain). Healthcare demand and perceived health were measured in the family caregivers, compared to the general population. Strobe Statement for observational studies has been used to strength the report of the results. Results: Final sample consisted of 314 family caregivers together with a subsample of 2.290 non‐caregivers taken from data of the National Health Survey. This subsample was paired by gender with our sample. Formal caregivers make fewer annual visits to the health services, with respect to the general population, regardless of the perceived level of health. The difference of the means between those who perceive their health as very poor was 0.11 (95% CI: 0.01 to 0.20) consultations with the family doctor, 0.21 (95% CI: 0.15 to 0.26) consultations with medical specialists and 1.70 (95% CI: 1.52 to 1.87) emergency room attention. Three independent factors were identified that predispose to the increased use of health services: background of greater education achievement (OR 8.13, 95% CI: 1.30 to 50.68), non‐cohabitation with the care recipient (OR 3.57, 95% CI: 1.16 to 11.11) and a more positive physical quality of life component (OR 1.06; 95% CI: 1.03 to 1.09). Discussion and Implications: Intrinsic components of the caregiver reveal their independent relationship with the provision of informal care and the use of health services. A broader vision is needed for the factors that influence the health of these caregivers to develop multipurpose interventions and improve the consistency and effectiveness of the health services offered to the caregiver.

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Prerequisites for providing effective support to family caregivers within the primary care setting - results of a study series in Germany

BACKGROUND: General Practitioners are considered to be well placed to monitor home-care settings and to respond specifically to family caregivers. To do this, they must be sensitive to the needs and expectations of caregivers. In order to determine the current status of GP care in terms of the support given to family caregivers, a series of studies were conducted to gather the perspectives of both caregivers and GPs. The results are used to derive starting points as to which measures would be sensible and useful to strengthen support offered to family caregivers in the primary care setting. METHODS: Between 2020 and 2021, three sub-studies were conducted: a) an online survey of 612 family caregivers; b) qualitative interviews with 37 family caregivers; c) an online survey of 3556 GPs. RESULTS: Family caregivers see GPs as a highly skilled and trustworthy central point of contact; there are many different reasons for consulting them on the subject of care. In the perception of caregivers, particular weaknesses in GP support are the absence of signposting to advisory and assistance services and, in many cases, the failure to involve family caregivers in good time. At the same time, GPs do not always have sufficient attention to the physical and psychological needs of family caregivers. The doctors interviewed consider the GP practice to be well suited to being a primary point of contact for caregivers, but recognise that various challenges exist. These relate, among other things, to the timely organisation of appropriate respite services, targeted referral to support services or the early identification of informal caregivers. CONCLUSIONS: GP practices can play a central role in supporting family caregivers. Caregivers should be approached by the practice team at an early stage and consistently signposted to help and support services. In order to support care settings successfully, it is important to consider the triadic constellation of needs, wishes and stresses of both the caregiver and the care recipient. More training and greater involvement of practice staff in the support and identification of caregivers seems advisable. 

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Piloting an innovative knowledge translation and exchange (KTE) approach on educational resources for caregivers

BACKGROUND: Knowledge translation and exchange (KTE) is about moving knowledge into practice, involving stakeholders in an ongoing iterative process. The Alzheimer Society of Canada (ASC) approaches KTE by emphasizing ongoing collaborations with our primary audiences: people with lived experience of dementia, healthcare providers, and researchers. Knowing that people have diverse learning styles and preferences for accessing information, ASC is diversifying the range of educational resources that are currently provided through a traditional medium (i.e., printed information sheets) to a multimedia range of KTE tools that can better meet the needs of our audiences. Beginning with a pilot project that explored the practical application of KTE to a key education resource, ASC has developed an operational process with the involvement of stakeholders to help our audiences access and benefit from the information they need in a manner that accommodates them. METHOD: A resource for the KTE pilot project was chosen based on a data driven approach to assess need and impact (i.e., number of website views, downloads, printed resource orders and feedback from stakeholders). Using ASC's KTE framework and the results of an environmental scan that identified KTE approaches used by other organizations, the team operationalized the KTE framework through a focus on four dimensions: 1) audiences, 2) information channels, 3) feasibility and 4) accessibility of the resource. Key stakeholders, including Alzheimer Society support staff and family caregivers, collaborated with ASC on the development of the tools through focus groups. RESULT: An infographic and a small video series on practical communication tips for caregivers were created. These KTE tools will support caregivers in staying connected to the person living with dementia at all stages of the disease; as the information is broad and digestible, it can be used by other audiences, such as healthcare providers. CONCLUSION: The KTE pilot project is a stepping-stone to establish a more integrative KTE approach to ASC's educational resources. The process established through this project will ensure that those who turn to ASC for information can find reliable, up-to-date and evidence-based content through a variety of tools that are engaging, easy to understand and accessible. 

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Physical activity, confidence and quality of life among cancer patient-carer dyads

Background: Physical activity (PA) has been positively associated with health-related quality of life (HRQoL) among cancer patients and family caregivers. However, there has been no relevant research for patient-caregiver dyads. Methods: Path analysis, based on the actor–partner interdependence model (APIM), was used to examine the relationship between physical activity and health-related quality of life and explore the mediating role of emotional distress in 233 dyads. Results: In both patients and caregivers, physical activity had a direct positive effect on physical quality of life (QoL) but not on mental. There was a significant indirect effect of physical activity on health-related quality of life via emotional distress for both dyad members. Patients’ and caregivers’ confidence in fighting cancer was negatively associated with their own emotional distress. Caregivers’ confidence in fighting cancer was positively associated with their physical activity and also negatively associated with patients’ emotional distress. Conclusions: Physical activity may be considered as a possible behavioral and rehabilitation strategy for improving health-related quality of life in patient-caregiver dyads and reducing negative symptoms. Future research and intervention may consider cancer patient-family caregiver dyad as a unit of care.

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Patient, carer and healthcare professional experiences of complex care quality in multidisciplinary primary healthcare centres: Qualitative study with face-to-face, in-depth interviews and focus groups in five French multidisciplinary primary healthcare c

Objectives: To explore care experiences in multidisciplinary primary healthcare centres from the patients, carers and healthcare professionals perspectives. Methods: This qualitative study used face-to-face, in-depth interviews and focus groups. Patients with multimorbidity monitored by a General Practitioner (GP) and another professional from the health centre were recruited through purposive sampling and included with their carer. They were interviewed together while professionals were interviewed separately. Verbatims were coded with subsequent blind analysis, using an inductive approach, to find aspects and features. The constant comparative method highlighted data consistencies and variations. Participants Twenty-six patients, 23 family carers and 57 healthcare professionals. Setting Five multidisciplinary primary healthcare centres, in France, between March 2017 and December 2018. Results: This unique study grouped perspectives into nine core quality of primary care aspects: having accessible, available, and varied care; feeling welcome and enjoying comfortable, well-equipped, and clean premises; having quality medicotechnical care (medical knowledge and technical skills); having a reliable GP; receiving appropriate care from healthcare professionals other than the GP; maintaining an efficient relationship with healthcare professionals; benefiting from organised and coordinated care; being an informed, supported and involved patient; having an informed, supported and involved carer. New areas of interest include the multidisciplinary nature of the centres, appreciation of other professionals within the centre, medicotechnical dimensions of care and the carer's role in maintaining patient autonomy. Conclusions: This is the first study to interview patients and carers alongside healthcare professionals. This enhanced knowledge improves understanding of these aspects and can guide implementation of evaluation tools that truly reflect patient and carer needs and enable an efficient experience in terms of quality. To address deficiencies in existing questionnaires, the new perspectives found will be added to former aspects to create a comprehensive quality of primary care evaluation tool. Trial registration number: NCT02934711.

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More GP contacts and poorer health of informal caregivers with low socioeconomic status in Germany: Results from the population-based DEGS1 and the cross-sectional GPCare-1 study

Objectives: Informal caregivers are known to have poorer mental health. Risk factors for caregiver burden include low education, female gender, cohabitation with the care recipient and lack of resources. General practitioners (GPs) have an important role in supporting caregivers. Methods: Drawing on data from two surveys, associations between caregivers' socioeconomic status (SES), psychophysical health and GP contacts are analysed. Design Cross-sectional study. The study draws on data from two surveys (German Health Interview and Examination Survey for Adults, DEGS1 and General Practice Care-1, GPCare-1). Setting Germany. Participants DEGS1: German general population (18+ years) n=7987. GPCare-1: general practice patients (18+ years) n=813. Primary outcome Psychophysical health, GP contacts and communication. Methods Using representative DEGS1 data, the prevalence of informal caregivers, caregivers' burden, chronic stress, various health conditions and frequency of GP contacts were evaluated stratified by SES. Data from the GPCare-1 study addressed caregivers' experiences and communication preferences with GPs. Results: In the DEGS1, the prevalence of caregivers was 6.5%. Compared with non-caregivers, caregivers scored significantly higher for chronic stress (15.45 vs 11.90), self-reported poor health (37.6% vs 23.7%) and GP visits last year (3.95 vs 3.11), while lifestyle and chronic diseases were similar. Compared with caregivers with medium/high SES, those with low SES had a significantly lower prevalence of high/medium caregiver burden (47.9% vs 67.7%) but poorer self-reported health (56.9% vs 33.0%), while other characteristics did not differ. In the GPCare-1 study, the prevalence of caregivers was 12.6%. The majority of them felt that their GP takes their problems seriously (63.6%) without difference by SES. Conclusion: Caregivers with low SES constitute an especially high-risk group for psychological strain, requiring special GP attention to support their needs. 

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Lifestyle and Symptom Management Needs: A Network Analysis of Family Caregiver Needs of Cancer Patients

Background: Previous research on the needs of family cancer caregivers (FCCs) have not elucidated associations between specific caregiving needs. Methods: Network analysis, a statistical approach that allows the estimation of complex relationship patterns, helps facilitate the understanding of associations between needs and provides the opportunity to identify and direct interventions at relevant and specific targets. No studies to date, have applied network analysis to FCC populations. The aim of the study is to explore the network structure of FCC needs in a cohort of caregivers in Singapore. FCCs (N = 363) were recruited and completed a self-report questionnaire on socio-demographic data, medical data on their loved ones, and the Needs Assessment of Family Caregivers-Cancer scale. The network was estimated using state-of-the-art regularized partial correlation model. The most central needs were having to deal with lifestyle changes and managing care-recipients cancer-related symptoms. Results: The strongest associations were between (1) having enough insurance coverage and understanding/navigating insurance coverage, (2) managing cancer-related pain and managing cancer-related symptoms, (3) being satisfied with relationships and having intimate relationships, and (4) taking care of bills and paying off medical expenses. Lifestyle changes, living with cancer, and symptom management are central to FCCs in Singapore. These areas deserve special attention in the development of caregiver support systems. Conclusions: Our findings highlight the need to improve access to social and medical support to help FCCs in their transition into the caregiving role and handle cancer-related problems. 

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Introduction and Psychometric Validation of the Resilience and Strain Questionnaire (ResQ-Care)— A Scale on the Ratio of Informal Caregivers' Resilience and Stress Factors

Background: Informal caregivers are a particularly vulnerable population at risk for adverse health outcomes. Likewise, there are many scales available assessing individual caregiver burden and stress. Recently, resilience in caregivers gained increasing interest and scales started to assess resilience factors as well. Drawing on a homeostatic model, we developed a scale assessing both caregivers' stress and resilience factors. We propose four scales, two covering stress and two covering resilience factors, in addition to a sociodemographic basic scale. Based on the stress:resilience ratio, the individual risk of adverse health outcomes and suggestions for interventions can be derived. Methods: A total of 291 informal caregivers filled in the ResQ-Care as part of a survey study conducted during the second wave of the COVID-19 pandemic in Germany. Exploratory factor analysis was performed. Validity analyses were examined by correlations with the Brief Resilience Scale (BRS), the Perceived Stress Scale (PSS-4) and the Geriatric Depression Scale (GDS-15). Results: The data fitted our proposed four-factor solution well, explaining 43.3% of the variance. Reliability of each scale was at least acceptable with Cronbach's α ≥0.67 and MacDonald's ω ≥0.68 for all scales. The two strain scales weighed more than the resilience scales and explained 65.6% of the variance. Convergent and discriminant validity was confirmed for the BRS and PSS-4, whereas the GDS-15 correlation pattern was counterintuitive. Conclusion: The factor structure of the ResQ-Care scale was confirmed, with good indications of reliability and validity. Inconsistent correlations of the scales with the GDS-15 might be due to a reduced validity of GDS-15 assessment during the COVID-19 lockdown. 

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Interventions to Support Informal Caregivers of People with Chronic Obstructive Pulmonary Disease: A Systematic Literature Review

Background: Chronic obstructive pulmonary disease (COPD) imposes tremendous challenges for both patients and informal caregivers. Caregivers are key players in the management of COPD. Recently, COVID-19 further increased reliance on informal caregivers who urgently need specific support. Objectives: This systematic literature review aimed to systematically describe the content and explore the effects of interventions to support informal caregivers of people with COPD. Methods: A mixed-methods systematic review was conducted. PubMed, Scopus, Web of Science, and EBSCO were searched. Studies implementing interventions supporting informal caregivers of people with COPD were included. Data were extracted and analysed in outcome domains and categories using framework analysis. Results: Twenty (14 quantitative, 4 mixed-methods, and 2 qualitative) studies were included. Informal caregivers were mainly female (86%). Caregiving context was poorly/never described. Interventions included patient-caregiver dyads and never caregivers only. Informal caregivers were invited to participate if available. Interventions were delivered across all COPD phases (acute/stable/advanced) and settings (inpatient/outpatient/home), with a wide range of total length, frequency, and duration of sessions. All included education about the disease and its management. Discharge/action plans (n = 12); adherence to therapy and healthy lifestyles (n = 9); and family concerns and psychosocial issues (n = 7) were also commonly addressed. Only 9 (45%) studies reported caregiver-related outcomes, and overall positive effects were observed in 7/9 outcome domains, using a high variety of qualitative and qualitative methods. Often categories were addressed but not assessed. Conclusion: Interventions have a narrow scope (i.e., education) and have not been specifically designed to support informal caregivers. Current evidence showed positive effects, but high methodological heterogeneity exists. Future studies need to explore caregiver-tailored, taking into consideration gender differences; multicomponent; and flexibly administered interventions to effectively support COPD caregivers. 

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Intergenerational caring: a systematic literature review on young and young adult caregivers of older people

Background: The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers. To this purpose, the findings of this review are framed within the caregiving stress appraisal model (renamed CSA model) elaborated by Yates’ and collegues, in order to highlight differences between young caregivers and the older ones. Methods: Multiple databases including PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were used to carry out a systematic review of the literature. Additional references were retrieved from experts contacted and research knowledge. The selected articles underwent both methodological appraisal and contents analysis: for every article an appraisal score was calculated and themes and sub-themes were identified. Results: Out of the ten included studies three were mixed methods, six qualitative and one quantitative. Nine reached a high quality methodological score and one medium. Four main themes emerged from the content analysis: aspects of the caregiving relationship; effects of caregiving; coping strategies; recommendations for services, policy and research. Conclusions: Selected studies explored practical features of the relationship between young caregivers and older family members (tasks performed, motivations, coping strategies) and highlighted both positive and negative outcomes on young people’s everyday life condition and future development. Nevertheless, these evidences were often limited to small samples that did not allow to make generalizations. More studies are needed including large samples in order to deepen the different aspects of caregiving and design tailored support services. 

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Informal carers in Sweden – striving for partnership

Background: Informal carers have an important role in society through their care and support of their long-term ill relatives. Providing informal care is challenging and can lead to caregiver burden; moreover, many support needs of the carers are not met, leading to confusion, disappointment and frustration. We conducted an interview study to clarify the meaning of support given and received by informal carers to relatives with chronic obstructive pulmonary disease or chronic heart failure. Methods: We purposively selected and recruited informants via participants in another study, thereby conducting interviews over the phone from June 2016 to May 2017. In total, we conducted 14 interviews with 12 informants. All interviews were transcribed verbatim and the content was analysed using a phenomenological hermeneutical approach. Result and conclusion: Our comprehensive understanding of the meaning of support for these carers is twofold: it is a self-evident struggle for the good life of their relatives and that they want to be carers in partnership. The healthcare system must recognize the efforts of carers and include them in the strategic planning and operational stages of care and treatment for people with long-term illness.

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The influence of family social support on quality of life of informal caregivers of cancer patients

Background: Caregivers of cancer patients are at high risk of experiencing impairments in terms of anxiety, depression and quality of life. Objectives: This study examines the mediation capacity that perceived emotional support can have after diagnosis and six months later between depression and anxiety after diagnosis and quality of life in informal caregivers of cancer patients. Design: A sample of 67 informal caregivers of cancer patients was used. This study is longitudinal, ex post facto prospective, with convenience sampling. Methods: Participants completed the Medical Outcomes Study 36-Item Short Form (SF-36), the Hospital Anxiety and Depression Scale (HADS) and the Berlin Social Support Scale (BSSS) and a sociodemographic questionnaire. Data were collected between March 2017 and November 2018. Results: Spearman's correlation analysis showed that anxiety, depression and perceived emotional support were related to quality of life. Conclusions: The mediation analysis showed that the relationship between depression after diagnosis and quality of life six months later was mediated by perceived emotional support. 

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Inclusion of Caregivers in Veterans’ Care: A Critical Literature Review

Background: More direct inclusion of informal caregivers (i.e., family, friends) in patients’ care will make care more patient- and family-centered and has the potential to improve overall quality of care for patients. We need to understand what potentially comprises “inclusive care” so that we can define what “inclusive care” is and develop targets for care quality metrics. Methods: We conducted a critical literature review to identify key components of “caregiver inclusion.” Focusing on extant literature from 2005 to 2017, 35 papers met inclusion criteria. Directed content analysis with constant comparison was used to identify major themes related to a concept of “inclusive care.” Findings: Our analysis indicates that “inclusive care” entails five components: clear definition of caregiver role, system level policies for inclusion, explicit involvement of caregiver, provider assessment of caregiver capability, and mutuality in caregiver–provider communication. Conclusions: We discuss the evidence behind these five components using the Donabedian health care quality conceptual model. 

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Implementation and dissemination of home and community-based interventions for informal caregivers of people living with dementia: A systematic scoping review protocol

Background: Ageing in place, supported by formal home and community services and informal caregivers, is the most used long-term care option for people with dementia (PwD). Informal caregivers are inundated by their caregiving responsibilities and resultantly suffer consequences. Despite the multitude of clinical effectiveness studies on interventions that support informal caregivers, there is a paucity of information regarding their implementation process. This scoping review aims to identify the implementation strategies, implementation outcomes, and barriers and facilitators that impede or support the dissemination and uptake of interventions that support informal caregivers of PwD at home. Methods and analysis :This protocol is guided by the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) Protocols, and the scoping review will follow the systematic steps of the PRISMA-Extension for Scoping Reviews guideline. The search strategy will include publications produced from inception to 8 March 2021 and will be conducted in the search engines Embase, Medline (Ovid), Web of Science and Cochrane Central Register of Controlled Trials (Wiley), followed by a three-stage approach. First, title and abstracts will be screened by two independent reviewers. Second, full-text articles will also be screened by both reviewers and, in case of disagreement, by a third reviewer. The first two stages are based on a set of inclusion and exclusion criteria. Reference lists of the final included studies will also be checked for relevant articles. Data from the final included studies will be extracted and synthesised using the Expert Recommendations for Implementing Change compilation and Proctor’s implementation outcomes to ensure homogenous and standardised reporting of implementation information. Ethics and dissemination: The review findings will be published in a peer-reviewed journal and disseminated at geriatric and implementation conferences to inform researchers, health service planners and practice professionals with an overview of the existing literature to guide them in the effective implementation of caregiver-focused interventions in dementia support.

 

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How nurses support family caregivers in the complex context of end-of-life home care: a qualitative study

Background: Family caregivers are crucial in providing end-of-life care at home. Without their care, it would be difficult for many patients to die at home. In addition to providing care, family caregivers also need support for themselves. Nurses could play an important role in supporting family caregivers, but little is known about if and how they do so. The aim of this study is to explore how nurses currently approach and support family caregivers in end-of-life home care and which factors influence their support of family caregivers. Methods: Data were collected using semi-structured interviews with 14 nurses from nine home care organisations in the Netherlands, in 2018. Interviews were audio-taped, transcribed verbatim and analysed using a thematic analysis approach. Results: We identified two underlying nursing perspectives on supporting family caregivers: an instrumental perspective (seeing family caregivers mostly as collaborative partners in care) and a relational perspective (seeing family caregivers as both providing and needing support). All the interviewed nurses stated that they pay attention to family caregivers’ needs. The activities mentioned most often were: identification of support needs, practical education, support in decision-making about the patient’s treatment, emotional support, and organising respite care, such as night care, to relieve the family caregiver. The provision of support is usually based on intuition and experience, rather than on a systematic approach. Besides, nurses reported different factors at the individual, organisational and societal levels that influenced their support of family caregivers, such as their knowledge and experience, the way in which care is organised, and laws and regulations. Conclusions: Nurses tend to address family caregivers’ needs, but such care was affected by various factors at different levels. There is a risk that nursing support does not meet family caregivers’ needs. A more reflective approach is needed and evidence-based needs assessment tools may help nurses to systematically assess family caregivers’ needs and to provide appropriate support.

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HOMESIDE-A home-based family caregiver-delivered music and reading intervention for people living with dementia: A randomised controlled trial

Background: Pharmacological interventions to address behavioural and psychological symptoms of dementia (BPSD) can have undesirable side effects, therefore non-pharmacological approaches to managing symptoms may be preferable. Past studies show that music therapy can reduce BPSD, and other studies have explored how formal caregivers use music in their caring roles. However, no studies have examined the effects on BPSD of music interventions delivered by informal caregivers (CGs) in the home setting. Objectives: Our project addresses the need for improved informal care by training cohabiting family CGs to implement music interventions that target BPSD, and the quality of life (QoL) and well-being of people with dementia and CGs. Methods: An international three-arm parallel-group randomised controlled trial has so far randomised 130 of the target 495 dyads from Australia, Germany, UK, Poland and Norway. Dyads are randomised equally to standard care (SC), a home-based music programme plus SC, or a home-based reading programme plus SC for 12 weeks. Results: The primary outcome is BPSD of people with dementia (measured using the Neuropsychiatric Inventory-Questionnaire). Secondary outcomes examine relationship quality between CG and people with dementia, depression, resilience, competence, QoL for CG and QoL for people with dementia. Outcomes are collected at baseline, at the end of the 12-week intervention and at 6 months post randomisation. Resource Utilisation in Dementia captures economic data across the life of the intervention and at 6-month follow-up. Conclusions: Our presentation will briefly outline the study protocol and describe the caregiver training protocol and interventions in detail with video footage illustrating how the intervention looks in practice. 

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Mental health service engagement with family and carers: what practices are fundamental?

Background: Substantial and important benefits flow to all stakeholders, including the service user, when mental health services meaningfully engage with carers and family members. Government policies around the world clearly supports inclusiveness however health service engagement with family and carers remains sporadic, possibly because how best to engage is unclear. A synthesis of currently used surveys, relevant research and audit tools indicates seven core ways that families and carers might be engaged by health services. This study sought to confirm, from the perspective of family and carers, the importance of these seven health service engagement practices. Methods: In a mixed method online survey, 134 family members and carers were asked what they received and what they wanted from mental health services. Participants also quantified the importance of each of the seven core practices on a 0–100 point likert scale. Results: Almost 250 verbatim responses were deductively matched against the seven themes, with additional unaligned responses inductively categorised. The findings triangulate with multiple diverse literatures to confirm seven fundamental engagement practices that carers and family want from health services. Conceptually, the seven practices are represented by two broad overarching practice themes of (i) meeting the needs of the family member and (ii) addressing the needs of the service user. Conclusion: Policy, clinical practice, training and future research might encompass the seven core practices along with consideration of the intertwined relationship of family, carers and the service user suggested by the two broader concepts. 

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Future provision of home end-of-life care: Family carers’ willingness for caregiving and needs for support

Objective: This study aimed to examine family carers’ willingness, perceived difficulties and confidence in providing home end-of-life care to family members in future and their needs for support for doing so. Specific focus was on whether significant differences were found between carers of low and high levels of psychological distress. Method: Family carers who had been providing care to family members living in the community were recruited via a local elderly agency in Hong Kong. A survey was conducted. Carers were asked to complete a questionnaire which included self-developed items, the Hospital Anxiety and Depression Scale, and the Carers’ Support Need Assessment Tool. Results: Of the 89 participants, 63.8% reported willingness to provide end-of-life care in future (increased to 78.5% if support needs were met), but most perceived it as difficult, and over half were not confident about doing so. The three greatest needs for support in end-of-life care are understanding the relative's illness, knowing what to expect in future, and knowing who to contact if concerned. Participants of the high psychological distress group experienced a significantly greater need for support in “dealing with your feelings and worries” and “looking after your own health. Conclusions: Current family carers may not be ready for future provision of home end-of-life care. Meeting their support needs in providing end-of-life care is crucial to ensure the continuity of care provision. Psychologically distressed carers may often ignore self-care and may need helping professionals’ additional support.

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Reciprocal burden: Adults with drug-resistant epilepsy reflect upon informal caregiver support (vol 89, pg 85, 2021)

Objectives: To explore how a sample of people with uncontrolled seizures describe their experiences of receiving informal supportive care. Methods: Using constructivist grounded theory, in-person, semi-structured interviews were conducted in 35 adults with drug-resistant epilepsy. These 20 (57%) women and 15 (43%) men were aged 18–68 years (mean= 35.6 years), with a range of verbal comprehension scores. The majority, 28 (80%) lived in nuclear family settings. Results: Unpredictable seizures disrupted personal autonomy and generated unique challenges for everyday life. While supportive care was deemed necessary to survival, subjective reflections around the implications of care-receiving and caregiving, were ultimately experienced as mutually burdensome. Four dynamic and interactive dimensions revealed a mirrored, interactive perspective of what it meant to be a care-recipient: assuming responsibility; protecting and supervising; acknowledging reliance and setting boundaries. Care-recipience was not one-sided, but included actively hiding personal struggles as a way to shield the caregiver from the emotional and physical demands of caregiving. Relationship dynamics between caregivers and care-recipients played a major role in treatment decision-making. A clinically useful Theory of Reciprocal Burden resulted from our study. Conclusions: This study adds an explanatory dimension to the concept of illness burden from the perspective of care-recipients. Relationship dynamics play a key role in patient-centered epilepsy care, with clinical implications for guiding supportive caregiving, fostering independence and promoting self-management strategies.

 

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Family caregivers’ experiences with tele-rehabilitation for older adults with hip fracture

Background: There is a knowledge gap for implementing tele-rehabilitation (telerehab) after hip fracture. We recently conducted a clinical trial (ClinicalTrials.gov Identifier: NCT02968589) to test a novel online family caregiver-supported rehabilitation program for older adults with hip fracture, called @ctivehip. Objectives: In this qualitative substudy, our objective was to use semi-structured interviews to explore family caregivers experience with the telerehab program. Methods: Twenty-one family caregivers were interviewed between three and six months after the older adults completed @ctivehip. One occupational therapist with research and clinical experience, but not involved in the main trial, conducted and transcribed the interviews. We conducted a multi-step content analysis, and two authors completed one coding cycle and two recoding cycles. Results: Family caregivers who enrolled in @ctivehip were satisfied with the program, stated it was manageable to use, and perceived benefits for older adults’ functional recovery after hip fracture. They also suggested im-provements for the program content, such as more variety with exercises, and increased monitoring by health professionals. Conclusions: This work extends existing literature and generates research hypotheses for future studies to test telerehab content and program implementation. 

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Factors Influencing Implementation of eHealth Technologies to Support Informal Dementia Care: Umbrella Review

Background: The worldwide increase in community-dwelling people with dementia underscores the need for innovative eHealth technologies that aim to provide support to both patients and their informal caregivers in the home setting. However, sustainable implementation of eHealth technologies within this target group can be difficult. Objective: The goal of this study was to gain a thorough understanding of why it is often difficult to implement eHealth technologies in practice, even though numerous technologies are designed to support people with dementia and their informal caregivers at home. In particular, our study aimed to (1) provide an overview of technologies that have been used and studied in the context of informal dementia care and (2) explore factors influencing the implementation of these technologies. Methods: Following an umbrella review design, five different databases were searched (PubMed, PsycINFO, Medline, Scopus, and Cochrane) for (systematic) reviews. Among 2205 reviews retrieved, 21 were included in our analysis based on our screening and selection procedure. A combination of deductive and inductive thematic analyses was performed, using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework for organizing the findings. Results: We identified technologies designed to be used “by informal caregivers,” “by people with dementia,” and “with people with dementia.” Within those groups, most of the represented technologies included, respectively: (i) devices for in-home monitoring of lifestyle, health, and safety; (ii) technologies for supporting memory, orientation, and day structure; and (iii) technologies to facilitate communication between the informal caregiver and person with dementia. Most of the identified factors influencing implementation related to the condition of dementia, characteristics of the technology, expected/perceived value of users, and characteristics of the informal caregiver. Considerably less information has been reported on factors related to the implementing organization and technology supplier, wider institutional and sociocultural context of policy and regulations, and continued adaptation of technology over time. Conclusions: Our study offers a comprehensive overview of eHealth technologies in the context of informal dementia care and contributes to gaining a better understanding of a broad range of factors influencing their implementation. Our results uncovered a knowledge gap regarding success factors for implementation related to the organizational and broader context and continuous adaptation over the long term. Although future research is needed, the current findings can help researchers and stakeholders in improving the development and implementation of eHealth technologies to support informal dementia care.

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Factors Associated with Quality of Life among Caregivers of People with Spinal Cord Injury

Objectives: Often people with spinal cord injury (SCI) require help from their caregivers to carry out activities of daily living. Such assistance may affect caregiver quality of life (QoL). This study investigates the QoL and its associated risk factors among caregivers of people with SCI to find possible ways to increase their QoL. Material and Method: A convenience sample of 135 Iranian caregivers of people with SCI participated in a cross-sectional study from the Brain and Spinal Injury Repair Research Center of Tehran (BASIR), Iran, from June 2018 to October 2019. The World Health Organization's Quality of Life Questionnaire (WHOQoL-BREF), the Beck Depression Inventory-II (BDI-II), the Caregiver Burden Scale (CBS), and a demographic questionnaire were administered. Hierarchical multiple linear regression analysis was then applied to identify risk factors associated with caregiver QoL. Results: Moderate to highly significant negative correlations were observed between all domains of the WHOQoL scale and subscales of the CBS and the BDI-II. After controlling for demographic and clinical variables, depression, burden, and level of injury were found to predict caregiver QoL significantly. Furthermore, QoL was lower in caregivers of people with quadriplegia than paraplegia (p<0.05). Conclusions: The level of injury, self-perceived caregiver burden, and depression are associated with QoL for the caregivers of people with SCI. A holistic approach incorporating caregiver training, psychological interventions, and adequate support may enable better QoL for these caregivers.

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Satisfaction with caregiving among informal caregivers of elderly people with dementia based on the salutogenic model of health

Objectives: The main objective was to analyze the variables Sense of Coherence, Resilience and Emotional Regulation as predictors of satisfaction with care in caregivers of older adults people with dementia. Methods: An ex post facto cross-sectional study design with a single group. The data were collected between June and October 2020.63 caregivers of older adults people with severe dementia participated, by responding to questionnaires concerning the study variables during a telephone interview. Information was also collected regarding the characteristics of the care provided (years of evolution, degree of dementia, index of independence) and regarding the caregiver (age and years of caregiving) which will be analyzed as control variables. The data were analyzed using correlation analysis and multiple linear regression analysis. Results: The participants presented average levels for Sense of Coherence, Resilience, Emotional Regulation (M = 16.93) and a high degree of Satisfaction with care. Sense of Coherence was the main predictor of Satisfaction with care, explaining up to 67% of the variance, through its Significance and Comprehensibility dimensions. Although the Resilience variable presented a significant association with Satisfaction, its role in the predictive model was displaced by Sense of Coherence. Conclusions: Sense of Coherence and Resilience are relevant psychological variables because of their positive relationship with satisfaction with care among caregivers of older adults people with dementia. The caregivers' perception of the significance and comprehensibility of the situation are important positive predictors of their satisfaction with the care of older people with dementia. These results are suggestive to guide the follow-up and psychological support of caregivers. 

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Identifying the needs of families of children with autism spectrum disorder from specialists and parents’ perspectives: A qualitative study

Background: Families face many challenges in caring for children with autism spectrum disorder (ASD) throughout their lives. Objectives: This study aimed to identify the needs of families of children with ASD from specialists and parents’ perspectives. Methods: Semi-structured, in-depth interviews were conducted with ASD specialists (n = 19) and parents of children with ASD (n = 23). Interviews were audio-recorded and transcribed verbatim. Qualitative analysis was conducted using a content analysis approach. Results: The needs of families were divided into nine themes and 11 sub-themes from the perspective of experts and four themes and 17 sub-themes from the point of view of parents. Major themes identified from the perspective of ASD specialists as the main needs of families included knowledge, skills, attitude, social needs, financial needs, educational needs, mental health services, ability to handle other family issues, and ability to deal with the specific child’s problems. Also, information, service, support, and financial needs were the four main categories of needs expressed by the parents. Conclusions: In general, understanding the needs of families is among the experts and the families somewhat similar but differs from each other in many ways. Achieving a shared understanding of family needs among professionals, parents, and policymakers can better address those needs. 

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Respite service for informal caregivers: evaluation of simulation-training based education program

Background: Currently, the care for elderly people is provided mainly on an informal basis by relatives. This is often associated with psychological and physical stress. Caregiving relatives usually take over the role unprepared and they lack both knowledge and skills to fulfil the tasks. Therefore, arrangements must be made to provide respite for family carers. Simulation training is a validated experiential learning tool traditionally incorporated in health professional education but has not been commonly used in the hands-on training of informal caregivers. Objectives: This study tried to measure whether participation in a special simulation training affects the trust in one's own ability to care, the quality of life and the stress perception of caring relatives. Methods: 98 caring relatives participated in the prospective, controlled (non-randomized) intervention study. The intervention involved an eight-month educational program in a simulation-training center in Graz (Austria). The program is either Manikin-based or Standardized Patient simulation trainings and take place in a show apartment. The impact on the caregiving competence, the quality of life and the burden-of-care was measured at the beginning (T1), after four months (T2) and after eight months (T3) using validated questionnaires (Self-Efficacy Scale, EQ-5D-5L and HPS). Results: The results show a significant influence of the education program on self-efficacy (p 0.0018) and the increase in knowledge (p 0.04) of the participants. With regard to the subjective quality of life and the perception of stress no significant effects were shown. Conclusions: The results show that the participation of family carers at the education program has different influence on the defined parameters. Not only the stable quality of life of the intervention group but also the short-term significant reduction in subjective stress perception directly after the training can be emphasized as positive indicators for the program. Key messages The results show that informal caregivers benefit from simulation training, since they can apply at home what they have learned during the training. Simulation training for informal caregivers significant influence their self-efficacy and the increase in knowledge.

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People with cancer and their family caregivers’ personal experience of using supportive eHealth technology: A narrative review

Background: To synthesise existing qualitative evidence regarding the experiences of people living with cancer and their family caregivers using eHealth technology in their home setting. Method: A narrative review using a systematic approach was utilised. Five databases (PubMed, CINAHL, EMBASE, PsycINFO and the Cochrane Library) were searched using a tailored search strategy to identify primary research articles published between January 2005 and May 2021. Studies were quality appraised using the Critical Appraisal Skills Programme's Qualitative Studies Checklist and the Mixed Method Appraisal Tool, where relevant. Identified studies were appraised by three reviewers and data were extracted for analysis. Key themes were identified and agreed upon by the authors. Results: 28 empirical studies were included in the review. Five major themes emerged: (i) understanding of cancer and its care (ii) alignment and integration of eHealth technology into daily life (iii) connection and collaboration with healthcare professionals, family and peers (iii) reassurance and sense of safety (iv) and the psychosocial impact on the self during the cancer experience. Conclusions: eHealth technology can have positive role in the lives of people with cancer and their family caregivers, beyond the intended health outcomes of the intervention. Individual preferences amongst people with cancer and their family caregivers using eHealth technology must be considered, especially regarding cancer information delivery, content and support methods. This review underlines a critical need for further in-depth evidence on the personal meaning and relationships people with cancer and their family caregivers develop with eHealth technology in an ambulatory care setting. 

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Social support moderates the effect of stress on the cortisol awakening response in dementia family caregivers

Background: Dementia caregiving has been associated with a range of adverse effects on the physical health of the caregiver. However, the specific mechanisms underlying the relationship between dementia caregiver stress and ill health remain unclear. Objectives: The aim of this study was to investigate, using available prospective data, the relationship between perceived stress (burden) and pre-clinical indices of ill-health (cortisol awakening response and secretory immunoglobulin A) amongst dementia caregivers. The potential moderating effect of social support on the perceived stress-physiological stress/health relationship was also explored. Methods: Participants (N = 31) were caregivers of community-dwelling older adults living with dementia who were enroled in a psychoeducation support program and provided data (study questionnaire and saliva samples) at two timepoints (T1 and T2), 10 weeks apart. Hierarchical regressions were used to determine if changes in stress and social support predicted change in each of the physiological outcomes. Results: Findings indicate that caregivers with more hours of care at T1, or with greater satisfaction with social support, were more likely to exhibit an adaptive cortisol awakening response at T2. Moreover, social support was found to buffer the effect of caregiver stress and hours of caregiving on the cortisol awakening response. Conclusions: Implications for future interventions targeting caregiver health are discussed. 

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Specific support needs and experiences of carers of people with frontotemporal dementia: A systematic review

Background: Frontotemporal dementia (FTD) is one of the most common types of dementia in persons younger than 65 years of age. Diagnosis is often delayed due to slow, gradual decline and misinterpretation of ‘non-typical’ dementia symptoms. Informal carers of people with FTD experience greater levels of overall burden than carers of people with other forms of dementia. Objectives: The aim of this systematic review was to describe the subjective experience of being an informal carer of a person with FTD and to identify the specific needs, coping strategies and helpful support resources of this carer population. Methods: Four electronic databases were used to search for published literature presenting experiences of carers of people with FTD between January 2003 and July 2019. Search strategy followed PRISMA guidelines. Findings were analysed using framework analysis, employing five stages of analysis to develop a coding index and thematic framework that included key aspects of the carer experience, which were grouped into themes and presented in a narrative format. Results: 1213 articles were identified in total. Twelve studies were included in the final synthesis of the review. Six themes were identified: ‘Challenging road to and receipt of diagnosis’, ‘relationship change and loss’, ‘challenging experiences in caring’, ‘positive experiences and resilience’, ‘coping’ and ‘support needs’. Discussion: Findings highlight an increased need for carers of people with FTD to receive support during the pre-diagnostic stage, including support to manage symptoms. Further research should explore relationship changes and loss amongst carers to inform approaches for carer support. In conclusion, the lack of knowledge and unique needs of carers highlight the importance of public awareness campaigns and healthcare professional education to support carers with FTD symptom impact. 

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Family Caregiver Perspectives on Benefits and Challenges of Caring for Older Adults With Paid Caregivers

Background: Many older adults receive help from both family caregivers and home care workers. We aimed to understand family caregivers’ perspectives on home care workers. Methods: This qualitative study took place at an academic medical center in New York, N.Y. We interviewed family caregivers of community-dwelling older adults about their experiences with home care workers. We analyzed transcripts thematically. Results: We interviewed 17 family caregivers and identified four major themes: (a) home care workers provide functional and emotional support; (b) home care is logistically challenging; (c) finding the right fit between home care workers, older adults, and families is essential; and (d) home care workers and family caregivers coordinate care well beyond the initiation of home care. Conclusion: Despite its logistical challenges, home care benefits patients and family caregivers. Given the growing prevalence of caregiving, clinicians and family caregivers might benefit from training and support about working with home care workers. 

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Supporting families and carers of people living with multiple sclerosis: a rapid realist review and realist evaluation

Background: Supportive interventions are needed for the family and carers of people with multiple sclerosis. Methods: A rapid realist review and realist evaluation explored what helps, who it helps, when and how. Literature analysis was synthesised with a thematic analysis of qualitative interviews and focus groups with 49 family and carers of people with multiple sclerosis. Results: The resulting model summarised a family of interventions that could help people develop their capabilities and expand their resources, resulting in more positive outcomes. Conclusions: This may prevent or delay a 'tipping point' where capacity to care is overwhelmed by caring roles.

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Taking a Break: Daily Respite Effects of Adult Day Services as Objective and Subjective Time Away From Caregiving

Background and Objectives: Adult day services (ADS) can provide emotional and physical relief for caregivers of persons with dementia. While prior studies conceptualized ADS use at the aggregate level as a dichotomous construct, little is known about objective and subjective respite as distinct constructs. This study investigated how objective and subjective breaks from caregiving were associated with caregivers' daily emotional well-being. Research Design and Methods: Family caregivers (N = 173) whose relatives were using ADS at least twice a week participated in daily interviews over 8 consecutive days (day N = 1,359). Participants provided information on daily respite hours and daily affect. They also reported perceived frequency of breaks from caregiving responsibilities and primary and secondary caregiving stressors (i.e., overload and work conflict). Multilevel models were used to examine the research questions. Results: On average, caregivers reported 7.12 respite hours on ADS days and 1.74 respite hours on non-ADS days. Having more objective respite was associated with higher positive affect, whereas more subjective respite was associated with lower negative affect, after controlling for ADS use and other covariates. Further, caregivers with greater work conflict experienced more benefits to their positive affect as a result of objective respite. Discussion and Implications: Objective and subjective respite are unique aspects of caregiving that may have varying impact on caregivers. Respite may be especially beneficial for caregivers experiencing conflict between work and caregiving.

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Exploring learning processes associated with a cancer pain self-management intervention in patients and family caregivers: A mixed methods study

Objectives: Explore learning processes associated with a psychoeducational pain selfmanagement intervention. Background: Self-management of cancer pain is challenging for patients and their family caregivers (FCs). While psychoeducational interventions can support them to handle these tasks, it remains unclear how learning processes are hampered or facilitated. Methods: A convergent parallel mixed methods design with qualitative data collection embedded in a randomized controlled trial (RCT) was used. Outpatients with cancer and FCs were recruited from three Swiss university hospitals. The six-week intervention consisted of education, skills building, and nurse coaching. Quantitative data on pain management knowledge and self-efficacy were analyzed using multilevel models. Patients and FCs were interviewed post-RCT regarding their learning experiences. Qualitative data analysis was guided by interpretive description. Finally, quantitative and qualitative data were integrated using case level comparisons and a meta-matrix. Results: Twenty-one patients and seven FCs completed this study. The group-by-time effect showed increases in knowledge (p = 0.035) and self-efficacy (p = 0.007). Patients' and FCs' learning through experience was supported by an intervention nurse, who was perceived as competent and trustworthy. After the study, most intervention group participants felt more confident to implement pain self-management. Finally, data integration showed that declining health hampered some patients' pain self-management. Conclusions: Competent and trustworthy nurses can support patients' and FCs' pain self-management by providing individualized interventions. Using a diary, jointly reflecting on the documented experiences, and addressing knowledge deficits and misconceptions through the use of academic detailing can facilitate patients' and FCs' learning of critical skills.

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Experiences of informal caregivers of people with dementia with nursing care in acute hospitals: A descriptive mixed‐methods study

Objectives: To explore the experiences of informal caregivers of people with dementia with the hospitalization of their relative concerning patient care, interactions with nurses, caregivers’ situation and the acute hospital environment. Methods: Mixed‐methods design.MethodsThe data were collected using an online questionnaire among a panel of caregivers (n = 129), together with a focus group and individual interviews from February to November 2019. The data were triangulated and analysed using a conceptual framework. Results: Almost half of the respondents were satisfied with the extent to which nurses considered the patient's dementia. Activities to prevent challenging behaviours and provide person‐centred care were rarely seen by the caregivers. Caregivers experienced strain, intensified by a perceived lack of adequate communication and did not feel like partners in care; they also expressed concern about environmental safety. A key suggestion of caregivers was to create a special department for people with dementia, with specialized nurses. Conclusion: Positive experiences of caregivers are reported in relation to how nurses take dementia into account, involvement in care and shared decision making. Adverse experiences are described in relation to disease‐oriented care, ineffective communication and an unfamiliar environment. Caregivers expressed increased involvement when included in decisions and care when care was performed as described by the triangle of care model. Caregivers reported better care when a person‐centred approach was observed. Outcomes can be used in training to help nurses reflect and look for improvements. Impact: This study confirms that caregivers perceive that when they are more involved in care, this can contribute to improving the care of patients with dementia. The study is relevant for nurses to reflect on their own experiences and become aware of patients’ caregivers’ perspectives. It also provides insights to improve nurses’ training and for organizations to make the care and environment more dementia‐friendly.

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The Supportive Care Needs of Primary Caregivers of Lung Transplant Candidates

Background: Caring for people with advanced illness has an impact on caregivers' physical, psychological, and emotional health. Patients being evaluated for lung transplantation or those on the transplant waitlist are required to have identified social support. However, little is known about the caregivers' specific supportive care needs. Objective: The aim of this study was to determine the supportive care needs of informal caregivers of patients who are being evaluated for or awaiting lung transplantation. Methods: A cross sectional survey of the caregivers of lung transplant candidates using the Carers' Support Needs Assessment Tool (CSNAT) was conducted. Results: The sample (n = 78) included caregivers from a single-center academic institution in the United States. Participants were predominantly Caucasian and female, mean age 58 years (SD:13). Most were the patient's spouse or partner and over half reported needs in the following areas: what to expect in the future; who to call with healthcare concerns; financial, legal and work issues; and caregivers' feelings and worries. When asked if they need more support in these areas, up to one-third indicated they needed "quite a bit more" or "very much more," with substantial needs regarding what to expect in the future, who to call with healthcare concerns, and financial, legal, or work issues. Conclusion: A substantial portion of lung transplant caregivers express need for more support. Future research should focus on testing strategies to promote regular assessment of these needs and examining the effectiveness of interdisciplinary interventions to address them.

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Exploration of caregiver experiences of conservatively managed end‐stage kidney disease to inform development of a psychosocial intervention: The acorn study protocol

Background: End‐stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition. Informal carers of patients who choose conservative management can also experience high levels of psychosocial burden, yet there is little guidance on how best to support informal carers, and no evidence on psychosocial interventions to address unmet needs.  Objectives: The aim of this study is to explore the experiences and unmet needs of informal carers of patients with ESKD receiving conservative management in order to inform the development of a psychosocial intervention. Methods: This qualitative study will consist of three stages: (I) semi‐structured interviews with informal carers in England and Northern Ireland, (II) focus groups with healthcare professionals and informal carers, and (III) national workshops to refine the components of a psychosocial intervention. Discussion: Informal carers of patients with ESKD who are receiving conservative management experience a high psychosocial burden, but there is limited evidence on how best to provide support, particularly as the patient nears the end of life. To our knowledge this study will be the first to address this gap by exploring the experiences and unmet needs of informal carers, with the aim of informing the development of a psychosocial intervention to support the health and wellbeing of informal carers. 

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Explore the Bereavement Needs of Families of Children With Cancer From the Perspective of Health Caregivers: A Qualitative Study

Background: The experience of bereavement is associated with severe physical, psychological, social and spiritual reactions in the parents of children with cancer. Because of that, the families of these children need to receive bereavement services. Objectives: The aim of this study was to explore the bereavement needs of families of children with cancer from the perspective of health caregiver as people who have a close relationship with the child and the family. Methods: This qualitative descriptive study design in. In total 15 semi-structured interviews were conducted using a purposive sampling in 2018. Interviews were recorded and transcribed and conventional content analysis was used to analysis the data. The Trustworthiness of the data were assessed according to the criteria of Lincoln and Guba. Results: From the data analysis, needs of the bereaved family were categorized in three dimension including “achieving peace,” “Abandoned family access to care,” and “continuing care.” The category of “achieving peace” includes spiritual and existential support, companionship with the family, contact with other bereaved families, support in passing and accepting the bereaved and continuing empathetic communication with the family, the category “Abandoned family access to care” includes the promotion of family self-control, awareness of end-of-life care to the family, and the category of “continuing care,” includes formal and informal family care and individualized care. Conclusion: It is necessary for the care team to pay special focus to family considering the needs of the family about the death of the patient and the challenges of the family bereavement period. It is recommended that members of the health care team should be trained in assessing family needs, identifying risks of adverse outcomes, continuing care, and providing resources during bereavement. The needs of the bereaved family should also be addressed in their care plan. 

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Testing a Self-Determination Theory Perspective of Informal Caregiving: A Preliminary Study

Background: Informal caregivers provide valuable care for ill or disabled adults. Nevertheless, many caregivers experience negative consequences from caregiving such as reduced mental health. Balancing personal costs of caregiving with caregivers' desires or obligations to provide care, is necessary to promote the well-being of these individuals and their care recipients. Drawing on a self-determination theory (SDT) perspective, caregivers whose psychological needs for relatedness, autonomy, and competence are satisfied with their care recipient, and their care recipients' healthcare providers, should be more autonomously motivated to care. Greater autonomous motivation should promote better mental health. Methods: This study tested mediation models in a sample of 158 caregivers in the United States. Autonomous motivation was examined as a mediator of the (a) associations between caregivers' need satisfaction with their care recipient and caregiver burden and depressive symptoms, and (b) associations between caregivers' autonomy support received from their care recipients' healthcare providers and caregiver burden and depressive symptoms. Next, specific types of motivation that vary in their relative autonomy were examined as unique mediators. Findings: Support was found for models using autonomous motivation as the mediator. Additionally, caregivers' autonomy support and female caregivers' need satisfaction were positively associated with intrinsic motivation to care which was negatively associated with burden. Although much research suggests caregivers' outcomes stem from the care recipients' condition, such as their functional dependence on others, the present study focused on the caregivers' relationships and motivations. Conclusions: Results support an SDT perspective of caregiving.

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Themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making in healthcare systems: a scoping review

Objective: To identify the key themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making across the organisation and system domains of healthcare systems. Methods: We conducted a scoping review. Seven databases of journal articles were searched from their inception to June 2019. Eligible articles were literature reviews published in English and provided useful information for determining aspects of engaging patients and family caregivers in decision-making to evaluate. We extracted text under three predetermined categories: structure, process and outcomes that were adapted from the Donabedian conceptual framework. These excerpts were then independently open-coded among four researchers. The subsequent themes and their corresponding excerpts were summarised to provide a rich description of each theme. Results: Of 7747 unique articles identified, 366 were potentially relevant, from which we selected the 42 literature reviews. 18 unique themes were identified across the three predetermined categories. There were six structure themes: engagement plan, level of engagement, time and timing of engagement, format and composition, commitment to support and environment. There were four process themes: objectives, engagement approach, communication and engagement activities. There were eight outcome themes: decision-making process, stakeholder relationship, capacity development, stakeholder experience, shape policy/service/programme, health status, healthcare quality, and cost-effectiveness. Conclusions: The 18 themes and their descriptions provide a foundation for identifying constructs and selecting measures to evaluate the quality of initiatives for engaging patients and family caregivers in healthcare system decision-making within the organisation and system domains. The themes can be used to investigate the mechanisms through which relevant initiatives are effective and investigate their effectiveness.

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The burden of caring for adults with depression and suicidal ideation in five large European countries: analysis from the 2020 National Health and Wellness Survey

Background: Suicidal ideation (SI) affects approximately 30-40% of those with major depressive disorder (MDD). To date, studies have examined the substantial humanistic and economic burden to caregivers of persons with MDD, however little is known of the impact of caring for persons with MDD when SI is present. Objectives: This study examined the additional burden imposed on caregivers for persons with unipolar depression and SI in five major European countries. Methods: A retrospective, cross-sectional analysis was conducted in five European countries using 2020 Europe National Health Wellness Survey (France, Germany, Italy, Spain and the United Kingdom) to compare differences in health and economic outcomes between caregivers of adults with unipolar depression and SI (CAUD-SI) and caregivers of adults with unipolar depression without SI (CAUD-nSI). The outcomes assessed included health-related quality of life (HRQoL; Medical Outcomes Study Short Form [SF-12v2]), health status (Short-Form 6 Dimension [SF-6D], EuroQol 5-Dimension 5-Level [EQ-5D-5L]), Work productivity and activity impairment (WPAI) and healthcare resource utilization (HRU). Linear mixed models and generalized linear mixed models adjusted for covariates were used to compare the two groups on outcomes of interest. Results: Of 62,319 respondents, 0.89% (n = 554) were CAUD-SI and 1.34% (n = 837) were CAUD-nSI. In adjusted models, CAUD-SI reported greater humanistic burden than CAUD-nSI, with lower HRQoL (PCS: 42.7 vs. 45.0, p < 0.001 and MCS: 37.5 vs. 38.9, p = 0.007) and health status (SF-6D: 0.57 vs 0.60, p < 0.001 and EQ-5D-5L: 0.58 vs 0.66, p < 001). CAUD-SI respondents reported significantly higher economic burden than CAUD-nSI respondents for WPAI (percent activity impairment: 64.9% vs. 52.5%, p = 0.026) and HRU (provider visits: 10.0 vs. 7.9, p < 0.001, emergency room visits: 1.49 vs. 0.73, p < 0.001 and hospitalizations: 1.03 vs. 0.52, p < 0.001). Conclusion: In five European countries, caregivers of adults with depression and SI experience additional humanistic and economic burden than caregivers of adults with depression and no SI. Distinguishing caregiver groupings and their unique burden provide important insights for providing targeted support and interventions for both the patient and caregiver.

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Feasibility of an automated bidet intervention to decrease caregiver Burden

Background: Informal caregivers often receive limited training and support, especially in providing assistance with toileting, a physically and emotionally demanding activity of daily living. This increases caregivers' risk for physical injury and burnout and jeopardizes older adults' ability to age in place. Objective: To assess the feasibility, acceptability, and preliminary efficacy of a toileting intervention using an automated bidet to reduce the amount of physical assistance required from caregivers. Methods: Randomized wait-list control feasibility study. Setting: Caregiver's home. Participants: Ten informal caregivers. Intervention: An occupational therapy intervention to educate and train caregiving dyads to use an automated bidet system. Outcomes and Measures: Feasibility was measured in terms of recruitment and retention, bidet installation, ability to operate the bidet, acceptability (a process evaluation), preliminary efficacy (physical barriers and impact on caregiver outcomes of performance, satisfaction, and self-efficacy), and adverse events. Results: All bidets were installed successfully. All caregivers reported that the intervention made toileting easier and increased their confidence. Physical barriers decreased for the treatment group. The bidet had a large effect on self-efficacy for the treatment group. Conclusions and Relevance: The results suggest that the automated bidet intervention is feasible and acceptable and can have a positive impact on caregiver outcomes when assisting with toileting. What This Article Adds: A toileting intervention using an automated bidet is feasible and acceptable for caregivers of older adults and can reduce the amount of physical assistance required from caregivers. 

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Family caregivers of people with dementia have poor sleep quality: A nationwide population-based study

Background: Previous studies have documented cognitive impairments, psychological stress, and depressive symptoms in family caregivers of people with dementia (PWD), which could be attributed to their sleep disturbances. Notwithstanding the increasing recognition of poor sleep quality and sleep disturbances in family caregivers of PWD, their association has not been tested yet using population-representative samples. Methods: We conducted a retrospective, cross-sectional study using population-based data from the 2018 Korean Community Health Survey. Sociodemographic, mental health-related, and physical health-related variables as well as sleep quality evaluated by the Pittsburgh Sleep Quality Index (PSQI) were compared between 2537 cohabitating caregivers of PWD, 8864 noncohabitat-ing caregivers of PWD, and 190,278 non-caregivers. Two sets of multivariable logistic regressions were conducted to examine the associations between dementia caregiving and poor sleep quality in cohabitating and noncohabitating caregivers versus noncaregivers. Results: Both cohabitating and non-cohabitating caregivers had higher global PSQI scores and higher prevalence of poor sleep quality (PSQI score > 5) than did noncaregivers. Multivariable logistic regressions adjusted for potential confounders revealed that cohabitating caregivers (odds ratio (OR) 1.26, 95% confidence interval (CI) 1.15–1.38) and noncohabitating caregivers (OR 1.15, CI 1.10–1.21) were significantly associated with poor sleep quality. Conclusions: Our results showed that both cohabitating and noncohabitating caregivers of PWD experienced overall poorer sleep quality compared to noncaregivers, indicating the deleterious effect of dementia caregiving on sleep quality, regardless of living arrangements. Given the high prevalence of poor sleep quality in family caregivers of PWD and the increasing awareness of the serious health consequences of poor-quality sleep, physicians should consider active sleep interventions to promote health and wellbeing not only for the dementia patients but also for family caregivers. 

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Factors influencing caregiver burden by dementia severity based on an online database from Seoul dementia management project in Korea

Backgrounds: As the prevalence of dementia rises, caregiver burden also increases in South Korea, especially for informal family caregivers. Objectives: This study aimed to analyze factors affecting caregiver burden by the severity of dementia based on data of patients in Seoul. Methods: A total of 12,292 individuals aged ≥65 years enrolled in the Seoul Dementia Management Project from 2010 to 2016 in an online database were selected. Caregiver’s burden was assessed using the Korea version of Zarit Burden Interview. Multiple regression analyses were performed to determine factors associated with primary caregiver’s burden after stratifying the severity of dementia. Results: Most patients showed moderate levels of cognitive impairment (49.4%), behavior problems (82.6%), and ADL dependency (73.6%). After stratifying the severity of dementia, caregivers caring for patients with mild symptoms of dementia were experienced with higher caregiver burden if patients were under a lower score of IADL. Significant factors for caregiver burden among caregivers supporting patients with moderate symptoms of dementia include caregivers’ residence with patients, subjective health status, and co-work with secondary caregivers. Lastly, caregivers for patients with severe dementia symptoms experienced a higher caregiver burden from limited cognitive function, problematic behavior, and caregivers’ negative health status. Conclusion: In terms of sample size, this study had far more patients than any other domestic or international study. It was meaningful in that it analyzed characteristics of patients with dementia and caregivers affecting the burden of caregivers in Korea. Intensive social supports with multiple coping strategies focusing on different levels of patients’ clinical symptoms and caregivers’ needs should be planned to relieve the caregiver burden. 

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Implementation and evaluation of a self-care toolkit for caregivers of families with dementia

Background: Family caregivers who care for individuals with dementia are more likely to develop chronic stress, major depression, anxiety, and physical health disorders and they have a higher mortality rate compared with the general population. Local problem: Caregivers are at an increased risk of physical and mental disorders. Many report that they are fatigued and need more forms of support. Methods: This project involved a convenience sample of 35 family caregivers who cared for family with dementia. Prequestionnaires and postquestionnaires were used to determine improvements in caregiver health and well-being and caregiver resources for supportive services as well as reduction in caregiver stress. Interventions: An evidence-based educational class was developed and implemented based on the Family Care Alliance (FCA): Taking Care of YOU: Self-Care for Family Caregivers Toolkit. The project aimed to (1) assess two FCA recommended domains: caregiver health and well-being and caregiver resources for supportive services and (2) reduce caregiver stress. Results: Stress Inventory results showed notable change in high risk/low risk categorization from pretest to posttest. At pretest, 31 caregivers were categorized as at high risk for unhealthy levels of stress, but posttest showed only 9 caregivers were so categorized. Approximately, 70% of those at high risk at pretest were categorized as low risk at posttest. Conclusions: This project validated that evidence-based educational interventions can improve caregiver knowledge and self-care. Continued support may be promoted by incorporating education and offering resource brochures to caregivers during primary care visits.

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Online Educational Tools for Caregivers of People with Dementia: A Scoping Literature Review

Background: Informal caregivers of people with dementia provide the majority of health-based care to people with dementia. Pro-viding this care requires knowledge and access to resources, which caregivers often do not receive. Objectives: We set out to evaluate the effect of online educational tools on informal caregiver self-efficacy, quality of life, burden/stress, depression, and anxiety, and to identify effective processes for online educa-tional tool development. Methods: We conducted a scoping review of articles on online educa-tional interventions for informal caregivers of people with dementia searching CINAHL, MEDLINE, EMBASE, and PubMed from 1990 to March 2018, with an updated search conducted in 2020. The identified articles were screened and the data were charted. Results: 33 articles that reported on 24 interventions were included. There is some evidence that online interventions improve caregiver-related outcomes such as self-efficacy, depression, dementia knowledge, and quality of life; and decrease care -giver burden. Common findings across the studies included the need for tailored, stage-specific information applicable to the caregiver's situation and the use of psychosocial techniques to develop the knowledge components of the interventions. Conclusion: We demonstrate the importance of having caregivers and health-care professionals involved at all stages of tool concep-tualization and development. Online tools should be evaluated with robust trials that focus on how increased knowledge and development approaches affect caregiver-related outcomes.

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Pilot Evaluation of a Facebook Group Self-Care Intervention for Primary Caregivers of Children with Developmental Disabilities

Objectives: The current exploratory study sought to develop and pilot a Facebook-delivered health-promoting self-care intervention for caregivers of children with developmental disabilities (DD). Methods: Survey and focus group methods were used to gain information about the participation of caregivers of children with DD in existing Facebook support groups and their experiences related to stress, self-care, and social support that would aid in intervention development. Results were used in concert with existing guidance to determine the content and targets of the intervention. Caregivers were recruited to participate in a Facebook group-delivered intervention focused on broad areas of self-care including physical health, psychological health, social health, and work health. The Facebook group-delivered intervention, designed to target these identified areas using social support, was piloted over an 8-week period with caregivers of children with DD. Results: Across all variables, differences from pretest to posttest were statistically significant, with small to large effect sizes. 

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The role of subjective social status in living well for carers of people with dementia: findings from the Improving the experience of Dementia and Enhancing Active Life programme

Background and Objectives: We investigated how carers of people with dementia evaluate their standing in their community and wider society, and if this is related to 'living well'. Methods: We used baseline data from the Improving the experience of Dementia and Enhancing Active Life programme and found that carers rated their standing in society higher than in their local community. Results: Higher evaluations of both were associated with enhanced life satisfaction, well-being and quality of life. Conclusions: Initiatives that increase support or engagement in the community or wider society may help to increase carerss' perceptions of their social status, enhancing their ability to 'live well'.

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Psychometric evaluation of “Family Inventory of Needs” in parents of cancer children

Background: Early childhood cancer creates various challenges in parents' lives and influences new needs, the identification of which requires a valid and reliable tool. Objective:The aim of this study was to translate and validate the Family Inventory of Needs (FIN) with the parents of children with cancer. Method: In this methodological research, 210 parents of children with cancer visiting pediatric oncology referral centers in Iran were selected through convenience sampling, based on the study inclusion criteria. The Farsi version of FIN was developed through translation and back-translation. Face validity as well as construct validity using the confirmatory factor analysis (CFA) were performed. The correlation between the score of FIN and the score of Caring Ability of Family Caregivers of Patients with Cancer-mothers’ version (CAFCPC-mother's version) was also calculated in order to evaluate the convergent validity. Furthermore, the stability and internal consistency reliability were investigated using software packages LISREL and SPSS. Results: The results of CFA showed that the single-factor structure of the tool with 20 items has an appropriate fit with the data and is therefore approved. Pearson coefficient (r) of the correlation between the mean scores of the NFI and the CAFCPC-mothers’ version was calculated to be 0.17 (p < 0.01). The Cronbach's alpha of the tool was calculated as 0.90, and the test-retest correlation coefficient as ICC = 0.91. Conclusion: The Farsi version of the FIN has appropriate psychometric properties among the population of Iranian parents of children with cancer. It may therefore be a suitable tool for measuring the emotional, physical, and psychological support provided for the parents of children with cancer. 

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Support system diversity among family caregivers of stroke survivors: a qualitative study exploring Asian perspectives

Background: Caregiving is a global phenomenon which is bound to increase in tandem with the aging population worldwide. Stroke is a condition common in older people that requires complex caregiving necessitating provision of adequate support to the caregivers. Past literature consists of limited accounts of types and organization of support arrangements needed by different caregivers. Objectives: We aimed to describe the support system of caregivers of stroke survivors in Singapore, highlighting differences across the different caregiver identities (i.e. spouse, adult-child, etc.). Methods: We conducted a qualitative descriptive study in the community setting involving 61 purposively sampled and recruited stroke survivors and caregivers. Semi-structured interviews were conducted, and transcripts were analysed using thematic analysis. Results: Our findings were summarized across the following 4 themes: 1) cultural influence and caregiving; 2) caregiver support system with the following sub-themes: 2.1) dyadic caregiver support type, 2.2) extended caregiver support type, 2.3.) distributed caregiver support type and 2.4) empowering caregiver support type; 3) breaks in care of stroke survivor and 4) complex relationship dynamics. We operationalized the caregiver support system as comprising of type, people and activities that enable the caregiver to participate in caregiving activities sustainably. While spouse caregivers preferred dyadic and extended support systems positioning themselves in a more central caregiving role, adult-child caregivers preferred distributed support system involving family members with paid caregivers playing a more central role. Conclusions: Our findings highlight caregiver identity as a surrogate for the differences in the caregiver support systems. Practical implications include imparting relationship-building skills to the stroke survivor-caregiver dyads to sustain dyadic support system and educating clinicians to include differences in caregiving arrangements of stroke survivors in practising family-centred care. 

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The expert caregiver intervention targeting former caregivers in finland: A co-design and feasibility study using mixed methods

Background: Informal caregivers face risks of social isolation. Given the high prevalence of informal caregivers in Europe, a considerable proportion of the population are also former caregivers. The Finnish Expert Caregiver intervention sought to train former caregivers to become volunteers aim-ing to support current caregivers through mainly peer support. Objectives and methods: The aims of this mixed method non-controlled exploratory intervention study were to assess the feasibility of the Finnish Expert Caregiver intervention by co-designing and implementing the intervention, and by assessing demand and practicality with special attention to the impact of COVID-19. Results: The findings imply that the intervention was feasible as it resulted in a co-designed training course consisting of 30 h with 25 participants enrolling and 19 of them trying volunteering activities. The participants reported high scores on well-being at all timepoints of study, however, without statistically significant differences. The analysis of the focus group interviews revealed that the Expert Caregivers experienced the intervention as meaningful and offered them a sense of belonging with the other participants. Apart from using their caregiving past as an asset, the participants also took advantage of other personal skills and resources. Risks of adverse effects were related to the participants’ expectations on their own contribution, demanding peer support recipients, poorly functioning peer support groups, and insufficient distance to one’s caregiving past. The participants stressed the need for continuing support from intervention facilitators. Conclusions: Future studies with larger samples should investigate whether the effects differ between subgroups of participants and explore the perspective of the peer support recipients. 

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The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

Background: Self-management (SM) interventions are supportive interventions systematically provided by healthcare professionals, peers, or laypersons to increase the skills and confidence of patients in their ability to manage chronic diseases. Objectives: (1) to summarise the preferences and experiences of patients and their caregivers (informal caregivers and healthcare professionals) with SM in four chronic diseases and (2) to identify and describe the relevant outcomes for SM interventions from these perspectives. Methods: We conducted a mixed-methods scoping review of reviews. We searched three databases until December 2020 for quantitative, qualitative, or mixed-methods reviews exploring patients’ and caregivers’ preferences or experiences with SM in type 2 diabetes mellitus (T2DM), obesity, chronic obstructive pulmonary disease (COPD), and heart failure (HF). Quantitative data were narratively synthesised, and qualitative data followed a three-step descriptive thematic synthesis. Identified themes were categorised into outcomes or modifiable factors of SM interventions. Results: We included 148 reviews covering T2DM (n = 53 [35.8%]), obesity (n = 20 [13.5%]), COPD (n = 32 [21.6%]), HF (n = 38 [25.7%]), and those with more than one disease (n = 5 [3.4%]). We identified 12 main themes. Eight described the process of SM (disease progression, SM behaviours, social support, interaction with healthcare professionals, access to healthcare, costs for patients, culturally defined roles and perceptions, and health knowledge), and four described their experiences with SM interventions (the perceived benefit of the intervention, individualised care, sense of community with peers, and usability of equipment). Most themes and subthemes were categorised as outcomes of SM interventions. Conclusion: The process of SM shaped the perspectives of patients and their caregivers on SM interventions. Their perspectives were influenced by the perceived benefit of the intervention, the sense of community with peers, the intervention’s usability, and the level of individualised care. Our findings can inform the selection of patient-important outcomes, decision-making processes, including the formulation of recommendations, and the design and implementation of SM interventions. 

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Effects of the tailored activity program (TAP) on dementia-related symptoms, health events and caregiver wellbeing: a randomized controlled trial

Background: People living with dementia (PLWD) and caregivers are adversely impacted by lack of meaningful activity leading to worse symptoms and impaired quality-of-life. There is a critical need to develop effective and well-tolerated treatments that mitigate clinical symptoms, engage PLWD and support caregiver wellbeing. We tested whether, compared to attention control, the Tailored Activity Program (TAP) reduced clinical symptoms and health-related events, and improved caregiver wellbeing, and if TAP activities were well-tolerated. Methods: We conducted a single-blind randomized controlled trial among 250 dyads recruited from Baltimore-Washington DC (2012–2016) with a dementia diagnosis and clinically significant agitation/aggression. Dyads were randomized to TAP (n = 124) or attention control (n = 126), and interviewed at baseline, 3 (endpoint) and 6-months (follow-up) by interviewers masked to group allocation. TAP assessed PLWD abilities/interests, instructed caregivers in using prescribed activities, and provided dementia education and stress reduction techniques. Attention controls received disease education and home safety tips. Both groups had up to 8 home visits over 3-months. The primary outcome was frequency by severity scores for agitation/aggression subscales of Neuropsychiatric Inventory-Clinician using caregiver ratings. Secondary outcomes included number of instrumental (IADL) and activities of daily living (ADL) needing assistance, caregiver wellbeing, and confidence using activities. Health-related events (PLWD death, hospitalizations, caregiver hospitalization, depression) and perceived study benefits were captured over 6 months. PLWD tolerability of prescribed activities was examined. Results: Of 250 dyads, most caregivers were female (81.2 %, n = 203), non-spouses (54.4 %, n = 136), white (59.2 %, n = 145) or African American (36.7 %, n = 90) with mean age = 65.4 (SD = 12.6). PLWD were mostly female (63.2 %, n = 158) with mean age = 81.4 (SD = 7.9), and mean MMSE = 14.3 (SD = 7.8). At 3-months, compared to controls, TAP conferred no benefit to agitation/aggression (p = 0.43, d = 0.11), but resulted in less IADL (p = 0.02, d=-0.33), and ADL (p = 0.04, d=-0.30) assistance, improved caregiver wellbeing (p = 0.01, d = 0.39), and confidence using activities (p = 0.02, d = 0.32). By 6-months, 15 PLWD in TAP had ≥ 1 health-related event versus 28 PLWD in control, demonstrating 48.8 % improvement in TAP (p = 0.03). TAP caregivers were more likely to perceive study benefits. Prescribed activities were well-tolerated. Conclusions: Although TAP did not benefit agitation/aggression, it impacted important outcomes that matter to families warranting its use in dementia care. Clinical trial registration: Clinicaltrials.gov # NCT01892579 at https://clinicaltrials.gov/; Date of clinical trial registration: 04/07/2013; Date first dyad enrolled: 15/11/2013. 

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Effects of family-based dignity intervention and expressive writing on anticipatory grief of family caregivers of patients with cancer: a study protocol for a four-arm randomized controlled trial and a qualitative process evaluation

Background: Family caregivers of dying cancer patients are affected by grief experiences and bereavement complications. Several approaches such as psycho-emotional care and an increase in spirituality have been suggested to diminish these complications. However, the knowledge about the effects of family-based dignity intervention and expressive writing on anticipatory grief in family caregivers of dying cancer patients is limited. This is a study protocol describing a hospital-based mixed-methods study on the effects of family-based dignity intervention and expressive writing on anticipatory grief in family caregivers of dying cancer patients. Methods: This mixed-methods study will be done in an embedded explanatory design with two quantitative and qualitative phases. In the first phase (quantitative), a randomized clinical trial will be done, in which 200 family caregivers of dying cancer patients will be randomly assigned to one of the four groups: family-based single dignity intervention (group 1), expressive writing intervention (group 2), combined family-based single dignity intervention and expressive writing (group 3), and control (group 4). At baseline, 1 week and 2 weeks after the interventions, anticipatory grief will be assessed by a 13-item anticipatory grief scale. After the quantitative phase, the qualitative phase will be conducted through the conventional content analysis approach of Granheim and Lundman, in which an individual semi-structured interview will be taken from participants in the first phase to collect data on their experiences on interventions. Finally, data from the quantitative and qualitative phases will be analyzed and discussed. Discussion: Family caregivers of dying cancer patients usually experience depression, anxiety, and psychological distress due to isolation and inadequate social support. Psychological interventions such as dignity and expressive writing interventions may help caregivers to obtain a better understanding of themselves and to increase their abilities to cope with caregiving difficulties. Therefore, there is a need for a comprehensive study confirming the effects of mentioned interventions on family caregivers of dying cancer patients. Trial registration: Iranian Registry of Clinical Trials (www.irct.ir) identifier: IRCT20210111050010N1. Date of trial registration: Feb 6, 2021. This is the first version of this protocol. 

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Effects of a social support family caregiver training program on changing blood pressure and lipid levels among elderly at risk of hypertension in a northern Thai community

Background: Hypertension is becoming increasingly prevalent among the elderly. Family caregivers play an important role in caring for elderly people and empowering them to care for themselves. Objectives: This study’s goal was to see how social support training for family caregivers affected changes in hypertension, total cholesterol, and high-density lipoprotein (HDL), and how such support led to the prevention of hypertension behaviors among the elderly in rural areas. Methods: This was a quasi-experimental study with 268 elderly people at risk of hypertension and their caregivers. Sixty seven pairs of elderly people and their caregivers were assigned to the intervention and control groups. Baseline data were collected in November 2020. The intervention group received the Social Support Family Caregiver Training Program (SSFCTP), while the control group received a regular program from the local health authority. The activity lasted 12 weeks, with home visits and telephone check-ups along the way, and data collection took place after the program ended. The final data were collected three months after the end of the intervention. Results: An analysis of repeated measures ANOVA showed the overall effect of the SSFCTP on knowledge, self-efficacy, health care behaviors, and blood pressure among elderly people during three different time periods (p<0.05). Furthermore, the intervention program had a time-dependent effect on knowledge, blood pressure, and total cholesterol levels (p<0.05). In terms of caregiver outcomes, there was an overall difference among the degrees of knowledge, self-efficacy, and behaviors toward health care displayed by elderly hypertensive patients during the three different time periods (p<0.05). The average knowledge and self-efficacy of the participants improved after the intervention. As a result, better self-care behaviors and lower blood pressure and total cholesterol levels were observed among the elderly participants after the intervention. Conclusions: The programs emphasized the importance of caregivers’ roles in providing social support, boosting confidence, and encouraging participation in caring, monitoring, and assisting the elderly in controlling blood pressure and other health issues.

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Effectiveness of self-administered acupressure for family caregivers of advanced cancer patients with insomnia: A randomized controlled trial

Background: Sleep disturbances are common among family caregivers (FCs) of patients with advanced cancer. Self-administered acupressure can combat insomnia, but no study has been conducted to evaluate its efficacy in caregivers of patients with advanced cancer. Objective: The aim of this study is to investigate whether self-administered acupressure improves sleep quality for FCs of patients with advanced cancer. Methods: Family caregivers of patients with advanced cancer who reported sleep disturbance (Pittsburgh Sleep Quality Index scores &gt;5 in recent months) were recruited. The experimental group self-administered acupressure at the Baihui (GV20), Fengchi (GB20), Neiguan (PC6), and Shenmen (HT7) points over a 12-week period, whereas the comparison group received sleep hygiene education. Sleep quality was assessed subjectively at 4, 8, and 12 weeks after the intervention using the Pittsburgh Sleep Quality Index and objectively using actigraphy measurements. Improvements in sleep quality were analyzed using a generalized estimating equation. Results: Compared with the control group, the experimental group demonstrated significantly lower sleep latency (Wald χ2 = 11.49, P = .001) and significantly better sleep efficiency (Wald χ2 = 5.24, P = .02) according to actigraphy measurements, but Pittsburgh Sleep Quality Index scores did not differ significantly between the groups. Conclusions: Self-administered acupressure did not demonstrate favorable effects on subjective sleep quality, but did reduce sleep latency and improve sleep efficiency, according to actigraphy measurements. Self-administered acupressure may help relaxation and sedation and promote sleep in FCs. Implications for Practice: Healthcare providers may consider advising FCs to apply this self-administered acupressure to improve their sleep latency and sleep efficiency. 

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Effects of care transitions intervention mode on the benefit-finding in caregivers for patients with acute cerebral infarction

Objectives: To explore the effect of care transitions intervention (CTI) on the sense of benefit-finding of caregivers for patients with acute cerebral infarction (ACI). Ninety caregivers for patients with ACI were divided into two groups according to the random number table method (n = 45 in each group). Methods: The control group was given regular health guidance, and the intervention group was given care transitions intervention on the basis of the guidance used in the control group. The changes in the sense of benefit-finding and quality of life between the two groups were compared before and after the intervention. Results: There was no statistically significant difference in caregivers between the two groups in gender, age, educational level, occupational status, gender and age of the patients, activities of daily living (ADL) scores before discharge, and the relationships between the caregiver and the patient. Before CTI, there was no statistically significant difference in the caregivers' sense of benefit-finding (including sense of benefit, family relationship, personal growth, social relationship and healthy behavior) and quality of life (including benefit-finding of care, stress of care, choice of care, support to care and money issue) between the two groups. While after CTI, the scores of each dimension of the caregivers' sense of benefit finding and quality of life in the intervention group were significantly higher than those in the control group (p < 0.05). Conclusions: The CTI can help improve the sense of benefit-finding and quality of life of caregivers for patients with ACI.

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Effectiveness of interventions to address the negative health outcomes of informal caregiving to older adults: Protocol for an umbrella review

Background: Informal (unpaid) caregivers play an essential role in caring for older people, whose care needs are often not fully met by formal services. While providing informal care may be a positive experience, it can also exert a considerable strain on caregivers' physical and mental health. How to best support the needs of informal caregivers remains largely debated. Objectives: This umbrella review (review of systematic reviews) aims to evaluate (1) whether effective interventions can mitigate the negative health outcomes of informal caregiving, (2) whether certain types of interventions are more effective than others, (3) whether effectiveness of interventions depends on caregiver/receiver, context or implementation characteristics and (4) how these interventions are perceived in terms of acceptability, feasibility and added value. Methods: We will include systematic reviews of primary studies focusing on the effectiveness of interventions (public or private, unifaceted or multifaceted, delivered by health or social care professionals or volunteers) aimed at reducing the impact of caregiving on caregivers' physical or mental health. This will also include quantitative and qualitative syntheses of implementation studies. The literature search will include the following databases: Medline, CINAHL, PsycINFO and Web of Science. A key informant-guided search of grey literature will be performed. Quality appraisal will be conducted with the AMSTAR-2 checklist for quantitative reviews and with an ad hoc checklist for qualitative syntheses. Narrative and tabular summaries of extracted data will be produced, and framework synthesis will be employed for weaving together evidence from quantitative studies in effectiveness reviews with findings on implementation from qualitative studies. Ethics and dissemination: This umbrella review will use data from secondary sources and will not involve interactions with study participants; it is thus exempt from ethical approval. Results will be presented at international conferences and will be published in a peer-reviewed journal. PROSPERO registration number CRD42021252841. 

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Effectiveness of a nurse-delivered (FOCUS+) and a web-based (iFOCUS) psychoeducational intervention for people with advanced cancer and their family caregivers (DIAdIC): study protocol for an international randomized controlled trial

Background: Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers’ quality of life. Objectives: This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads’ emotional functioning and self-efficacy. Methods: We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. Discussion: DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. Trial registration: Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349. Date and version identifier: 20211209_DIAdIC_Protocol_Article. 

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Effectiveness of a mindfulness-based intervention program for women family caregivers of older adults

Background: The objective of this study was to analyze the effectiveness of a mindfulness-based intervention program for the promotion of well-being and health in family caregivers. Methods: The participants were 111 family women caregivers aged between 33 and 75 years old. This was a double-blinded randomized controlled trial. The mindfulness intervention program lasted 12 weeks. The experimental group underwent mindfulness and acceptance-based interventions (MABIs). The control group performed physical activity training. Results: A cross-lagged panel analysis was computed with the two waves of health, well-being, burden and resilience and age in years and intervention as predictors. The cross-lagged path model fit well χ2 (8) = 7.179, p = 0.51, root mean square error of approximation (RMSEA) = 0.00, comparative fit index (CFI) = 1.00, standardized root mean square residual (SRMR) = 0.05. The mindfulness intervention program was a significant predictor accounting for decreasing health problems (β = −0.292, p &lt; 0.01) and burden (β = −0.190, p &lt; 0.01) and increasing well-being (β = 0.107, p &lt; 0.05) at post-test. Conclusions: Mindfulness-based intervention programs are effective in coping with the burden of family caregivers and, in turn, in promoting resilience, well-being and health among caregivers. Our findings encourage clinical uses of mindfulness interventions to promote health. 

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Evaluation of the usability, accessibility and acceptability for a family support intervention (Family-Focused Support Conversation) for end of life care discharge planning from hospital: A participatory learning and action research study

Background: Family support is internationally recognised as integral to palliative care. However, during end of life care discharge planning from hospital, families report a lack of opportunity to discuss their concerns or contribute their knowledge of the ill family member and consequently feel unheard and unsupported. To counter this experience, we co-produced the Family-Focused Support Conversation, a novel research-informed intervention, to guide discussion of family concerns about the meaning, implications and manageability of end of life caregiving following discharge. Objectives: To qualitatively evaluate the usability, accessibility and acceptability of the Family-Focused Support Conversation in hospital and factors which promote and inhibit implementation. Design: Participatory Learning and Action Research design, guided by Normalization Process Theory, a social implementation theory. Settings: Implementation was undertaken by 45 clinical co-researchers, specialist nurses (n=42) and occupational therapists (n=3), working in specialist palliative care teams in twelve hospitals (within seven NHS Trusts) across England, over a six-month period. Methods: During implementation clinical co-researchers collected reflective data about intervention delivery (n=110), participated in regular in-depth conversations of implementation with the research team (n=26 meeting records) and in a final evaluation meeting (n=11 meeting records). Data from family members who had received the intervention, comprised brief questionnaires (n=15) and in-depth semi-structured interviews (n=6). Data were qualitatively analysed, informed by Normalization Process Theory and Family Sense of Coherence Theory. Results: Clinical co-researchers found the intervention eminently usable and accessible. They reported a shift in family support from informing family members about patient healthcare needs, to family concerns such as how they made sense of the meaning of discharge, and how to provide family-orientated care. Family members found the intervention acceptable, they felt supported and able to make informed decisions about their role in providing end of life care. Implementation was positively influenced by coherence between the intervention and value placed on family care by clinical co-researchers. Once incorporated in their practice intervention delivery took no longer than usual practice and could be divided across consultations and collectively delivered with ward and discharge teams. Conclusions: The Family-Focused Support Conversation is usable, accessible and acceptable. It enhances family support by facilitating discussion of family concerns about end of life caregiving and results in family members making informed decisions about their role in end of life care following discharge. 

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Early Positive Approaches to Support (E-PAtS) for Families of Young Children With Intellectual Disability: A Feasibility Randomised Controlled Trial

Background: Parents of children with intellectual disabilities are likely to experience poorer mental well-being and face challenges accessing support. Early Positive Approaches to Support (E-PAtS) is a group-based programme, co-produced with parents and professionals, based on existing research evidence and a developmental systems approach to support parental mental well-being. Objectives: The aim of this study was to assess the feasibility of community service provider organisations delivering E-PAtS to parents/family caregivers of young children with intellectual disability, to inform a potential definitive randomised controlled trial of the effectiveness and cost-effectiveness of E-PAtS. Methods: This study was a feasibility cluster randomised controlled trial, with embedded process evaluation. Up to two parents/family caregivers of a child (18 months to <6 years old) with intellectual disability were recruited at research sites and allocated to intervention (E-PAtS and usual practise) or control (usual practise) on a 1:1 basis at cluster (family) level. Data were collected at baseline and 3 and 12 months' post-randomisation. The following feasibility outcomes were assessed: participant recruitment rates and effectiveness of recruitment pathways; retention rates; intervention adherence and fidelity; service provider recruitment rates and willingness to participate in a future trial; barriers and facilitating factors for recruitment, engagement, and intervention delivery; and feasibility of collecting outcome measures. Results: Seventy-four families were randomised to intervention or control (n = 37). Retention rates were 72% at 12 months post-randomisation, and completion of the proposed primary outcome measure (WEMWBS) was 51%. Recruitment of service provider organisations and facilitators was feasible and intervention implementation acceptable. Adherence to the intervention was 76% and the intervention was well-received by participants; exploratory analyses suggest that adherence and attendance may be associated with improved well-being. Health economic outcome measures were collected successfully and evidence indicates that linkage with routine data would be feasible in a future trial. Conclusions: The E-PAtS Feasibility RCT has demonstrated that the research design and methods of intervention implementation are generally feasible. Consideration of the limitations of this feasibility trial and any barriers to conducting a future definitive trial, do however, need to be considered by researchers. Clinical Trial Registration: https://www.isrctn.com, identifier: ISRCTN70419473. 

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Do caregivers who connect online have better outcomes? A systematic review of online peer-support interventions for caregivers of people with stroke, dementia, traumatic brain injury, Parkinson's disease and multiple sclerosis

Background and Objectives: This systematic review aimed to identify and appraise the evidence for online peer-support interventions for caregivers of stroke survivors (with and without aphasia), and people with dementia, traumatic brain injury (TBI), Parkinson's disease and multiple sclerosis. Research Design and Methods: Systematic review conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Five databases were systematically searched up until September 2020: EMBASE, PubMed, CINAHL, Scopus and Web of Science. Two reviewers independently screened titles, abstracts and full-text articles. The methodological quality of included studies was assessed using Physiotherapy Evidence Database (PEDro) and Mixed-Methods Appraisal Tool (MMAT) scales. Interventions were described using the Template for Intervention Description and Replication (TIDieR) checklist. Results: A total of 3026 records were identified from database searches. Following screening, 18 studies reporting 17 interventions were included in this review. Most studies (n = 13) reported interventions for caregivers of people with dementia. All studies incorporated an element of peer support as part of the intervention, however, most interventions (n = 15) comprised both psychosocial and educational elements. Statistically significant changes were reported for 11 interventions in one or more of the following domains: caregiver knowledge, mental health, stress, depression, distress, burden, self-efficacy, mastery, helplessness and perceived support. Qualitative outcomes included perceived reductions in stress and increased emotional and informational support. Discussion and Implications: Positive changes in caregiver outcomes were identified in response to multi-component online interventions (i.e., peer support in addition to education). Peer support was often poorly described, limiting the conclusions that could be drawn about the intervention components which result in better outcomes. Online interventions may provide an accessible and effective means of supporting caregivers.

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Effectiveness of Remote Interventions in Improving Caregiver Stress Outcomes for Caregivers of People With Traumatic Brain Injury

Objective: Caregiver stress is the term used to define the adverse effects of caregiving, and its prevalence among caregivers of people with traumatic brain injury (TBI) is amplified by the suddenness of brain injury. This systematic review aimed to identify whether remote interventions can be helpful in minimizing those financial, emotional, and physical stressors associated with caring for a person with TBI. Method: Studies were located by searching the following databases: PsycINFO, PubMed, Science Direct, Web of Science, Academic Search Premier, CINAHL, Medline, and Cochrane Central Register of Controlled Trials. Studies were included if they met the following criteria: (a) The study must be published in English, (b) The study must be published in a peer-reviewed journal, (c) The study must implement a remote intervention specific to caregivers of people with TBI, and (d) One or more symptoms of caregiver stress must be measured as an outcome. Results: After the review process, 12 articles met the inclusion criteria for the study. Most of the studies were randomized controlled trials, used an online problem-solving module, and targeted parents of children/adolescents with a TBI. Ten out of the 12 studies (83.3%) found that remote/online interventions improved caregiver stress outcomes and only two studies did not find improvement in caregiver stress outcomes. Conclusion: Results from this systematic review indicate that online interventions can be as effective as in-person interventions in reducing the symptoms of caregiver stress for caregivers of people with TBI. Implications for practice, research, and policy are discussed. Impact and Implications: Remote interventions are effective in improving life satisfaction, quality of life, and overall caregiver functioning among caregivers of people with traumatic brain injury (TBI). Remote interventions are also effective in reducing depression, anxiety, psychological distress, and other psychiatric symptoms among caregivers of people with TBI. Support services for caregivers should consider remote interventions such as online support groups, online psychotherapy, and telephone interventions to reduce access barriers for caregivers of people with TBI. 

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Effects of care transitions intervention mode on the benefit-finding in caregivers for patients with acute cerebral infarction

Objectives: To explore the effect of care transitions intervention (CTI) on the sense of benefit-finding of caregivers for patients with acute cerebral infarction (ACI). Methods: Ninety caregivers for patients with ACI were divided into two groups according to the random number table method (n = 45 in each group). The control group was given regular health guidance, and the intervention group was given care transitions intervention on the basis of the guidance used in the control group. The changes in the sense of benefit-finding and quality of life between the two groups were compared before and after the intervention. Results: There was no statistically significant difference in caregivers between the two groups in gender, age, educational level, occupational status, gender and age of the patients, activities of daily living (ADL) scores before discharge, and the relationships between the caregiver and the patient. Before CTI, there was no statistically significant difference in the caregivers' sense of benefit-finding (including sense of benefit, family relationship, personal growth, social relationship and healthy behavior) and quality of life (including benefit-finding of care, stress of care, choice of care, support to care and money issue) between the two groups. While after CTI, the scores of each dimension of the caregivers' sense of benefit finding and quality of life in the intervention group were significantly higher than those in the control group (p < 0.05). Conclusions: The CTI can help improve the sense of benefit-finding and quality of life of caregivers for patients with ACI.

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Combining a variable‐centered and a person-centered analytical approach to caregiving burden – a holistic approach

Background: Informal caregivers of persons with dementia often experience elevated levels of caregiving burden. However, existing studies tend to use a variable-centered approach to explore it. This study aims to understand the caregiving burden of informal caregivers of persons with dementia in Singapore through a combination of variable-centered and person-centered analytical approaches, and explore the correlates of identified factors and latent classes of caregiving burden. Methods: Zarit Burden Interview was used to gauge the caregiving burden of 282 primary informal caregivers of persons with dementia recruited through convenience sampling in Singapore. Factor analysis and latent class analysis were conducted to identify the latent factors and the latent classes of Zarit Burden Interview, followed by multiple linear regression and multinomial logistic regression to explore their significant correlates. Results: The analyses suggested a 17-item 3-factor structure for Zarit burden interview and three mutually exclusive caregiving burden classes. Regression analyses found that caregiving related variables especially care recipients’ memory and behaviour problems were correlated with both the factors and latent classes of caregiving burden. Conclusions: The combination of these two approaches suggests that caregivers experiencing higher burden on one domain are likely to experience higher burden on the other two domains. This further supports the point that more attention should be given to caregivers who experience an overall high burden. Future research could explore the generalizability of our findings among caregivers elsewhere and explore the type of support needed by caregivers, especially those experiencing high burden. 

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Co-designing toolkits to improve post-diagnostic support for people living with dementia, care partners and health and social care professionals (COGNISANCE)

Background: COGNISANCE is an international research programme (Australia, UK, Canada, Netherlands, and Poland). In partnership with people living with dementia, informal care partners, health and social care professionals and key national and international dementia organisations and researchers, we have co-designed online toolkits aiming to improve post-diagnostic support for dementia. Methods: We have worked closely with local working groups representing members from key audiences and a design and marketing agency to run a series of workshops in five countries. The workshops to date have focussed on the key messages, motivators for information seeking, experiences of dementia diagnosis and post diagnostic support, the purpose for toolkits and the tone and branding appropriate for the key audiences for a resource that focusses on the first twelve months post-diagnosis. Results: Co-design workshops were successfully run concurrently in five partner countries. Each country's research team and local working groups remained highly engaged throughout the process. Key motivators for the toolkits led to a focus on a practical and empathetic resource that was tailored to the individual. The toolkits will be a website that has three separate pathways, one for people recently diagnosed with dementia, one for care partners and one for health and social care professionals. These will function to support communicating the diagnosis, post-diagnostic support and planning for the first year post diagnosis. The design and marketing agency have worked closely with research teams and local working groups throughout the co-design process to interpret and build iteratively on each workshop outcome. From this we have successfully produced a generic website that can be tailored in different locations to the three key audiences. Conclusion: In the co-design process, representative users identified the need for a practical, empathetic and individually-tailored resource. The toolkit will be a website that has an individual planning tool for the first twelve months following a dementia diagnosis. We are continuing the co-design process to develop a campaign. This will promote the key messages and toolkit, to plan for a life with dementia, ahead of user testing, implementation and evaluation.

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Clinicians for CARE: A Systematic Review and Meta-Analysis of Interventions to Support Caregivers of Patients With Heart Disease

Background: Caregivers provide critical support for patients with chronic diseases, including heart disease, but often experience caregiver stress that negatively impacts their health, quality of life, and patient outcomes. Objectives: We aimed to inform health care teams on an evidence-based approach to supporting the caregivers of patients with heart disease. Methods and Results: We conducted a systematic review and meta-analysis of randomized controlled trials written in English that evaluated interventions to support caregivers of patients with heart disease. We identified 15,561 articles as of April 2, 2020 from 6 databases; of which 20 unique randomized controlled trials were evaluated, representing a total of 1570 patients and 1776 caregivers. Most interventions focused on improving quality of life, and reducing burden, depression, and anxiety; 85% (17 of 20) of the randomized controlled trials provided psychoeducation for caregivers. Interventions had mixed results, with moderate non-significant effects observed for depression (Hedges' g=-0.64; 95% CI, -1.34 to 0.06) and burden (Hedges' g=-0.51; 95% CI, -2.71 to 1.70) at 2 to 4 months postintervention and small non-significant effects observed for quality of life and anxiety. These results were limited by the heterogeneity of outcome measures and intervention delivery methods. A qualitative synthesis of major themes of the interventions resulted in clinical recommendations represented with the acronym "CARE" (Caregiver-Centered, Active engagement, Reinforcement, Education). Conclusions: This systematic review highlights the need for greater understanding of the challenges faced by caregivers and the development of guidelines to help clinicians address those challenges. More research is necessary to develop clinical interventions that consistently improve caregiver outcomes.

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Clinical and cost-effectiveness of a New psychosocial intervention to support Independence in Dementia (NIDUS-family) for family carers and people living with dementia in their own homes: a randomised controlled trial

Background: Most people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia’s life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social care professionals and family carers of people with dementia, a new intervention (NIDUS-family). To our knowledge, NIDUS-family is the first manualised intervention that can be tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads’ selected goals. We will evaluate the effect of NIDUS-family and usual care on goal attainment, as measured by Goal Attainment Scaling (GAS) rated by family carers, compared to usual care alone at 12-month follow-up. We will also determine whether NIDUS-family and usual care is more cost-effective than usual care alone over 12 months. Methods: A randomised, two-arm, single-masked, multi-site clinical trial involving 297 people living with dementia-family carer dyads. Dyads will be randomised 2:1 to receive the NIDUS-family intervention with usual care (n = 199) or usual care alone (n = 98). The intervention group will be offered, over 1 year, via 6–8 video call or telephone sessions (or face to face if COVID-19 restrictions allow in the recruitment period) in the initial 6 months, followed by telephone follow-ups every 1–2 months to support implementation, with a trained facilitator. Discussion: Increasing the time lived at home by people living with dementia is likely to benefit lives now and in the future. Our intervention, which we adapted to include remote delivery prior to trial commencement due to the COVID-19 pandemic, aims to address barriers to living as well and as independently as possible that distress people living with dementia, exacerbate family carer(s) stress, negatively affect relationships, lead to safety risks, and frequently precipitate avoidable moves to a care home. Trial registration: International Standard Randomised Controlled Trials Number ISRCTN11425138. Registered on 7 October 2019 

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Impact of the COVID-19 pandemic on family carers in the community: A scoping review

Background: The COVID-19 pandemic has led to the closure or reduction in support services for family carers, resulting in increased social isolation and stress for this population. Objectives: The current scoping review aimed to identify the impact of COVID-19 upon carers and support provided for them during the pandemic. Methods: Four online databases (CINAHL, Medline, PsycINFO and PubMed) were systematically searched on 16th December 2020 and updated on 16th July 2021 for articles written in English and published after January 2020, focused on the carer and the impact of COVID-19. Google scholar and reference lists of relevant papers were checked, and key authors were contacted for further relevant information. Results: The database searches identified 976 citations, which resulted in 670 unique articles following the removal of duplicates. Title and abstract screening identified 63 articles for full-text review, 11 of which were subsequently excluded, leaving 52 articles which were subject to inductive thematic analysis. Four key themes were identified. Whilst a number of issues were identified that were exacerbated by the pandemic, others directly resulting from it were revealed. Few studies discussed support measures for carers and only one trial evaluated an intervention. Conclusions: This review identifies the impact of COVID-19 on carers, but there is a dearth of evidence to inform appropriate tailored support. Governments need to identify carers as a priority group in social care reform and commission co-produced, evidence and experience informed pathways to reinstate support services, potentially modelled on pandemic plans following the example currently being considered for the paid healthcare workforce.

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Models of support to family members during the trajectory of cancer: A scoping review

Aims and objectives: To map the existing literature on support models provided to family members during the cancer trajectory. Background: Cancer diagnosis, treatment and survivorship have a profound influence on the surrounding family members. This scoping review is part of the development of a support model for family members of persons diagnosed with colorectal cancer. Methods: The method was guided by the Arksey and O’Malley framework, described in the Joanna Briggs Institute guidelines, and the reporting is compliant with PRISMA-ScR Checklist. Searches were conducted in PubMed, CINAHL and PsycINFO from November 2019–February 2020 with no limitation in publication year or study design. Complementing searches were conducted in reference lists and for grey literature, followed by an additional search in September 2020. Inclusion criteria were primary research about support provided by health care, to family members, during cancer, of an adult person, in Swedish or English, of moderate or high methodological quality. Quality was assessed using the Joanna Briggs Institute critical appraisal tools. Data were extracted using a charting form. Result: A total of 32 studies were included in the review describing 39 support models. Conclusion: The mapping of the existing literature resulted in the identification of three themes of support models: psychoeducation, caregiver training and psychological support. In addition, that future research should target a specific diagnosis and trajectory phase as well as include family members and intervention providers in model development. Relevance for clinical practice: Knowledge from the literature on both the needs of the family members and existing support models should be incorporated with the prerequisites of clinical practice. Clinical practice should also be complemented with structured assessments of family members’ needs conducted regularly. 

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How professional support for young carers benefits from a salutogenic approach

Background: Carers (including young carers) experiencing negative outcomes due to their caring role are more likely to report a lower sense of coherence. This article explores young carers' support needs for support provided by professionals. Methods: A total of 20 interviews with young carers and the persons for whom they provide care were analysed by applying Antonovsky's paradigm of salutogenesis. The dimensions of manageability, comprehensibility and meaningfulness served to categorise the data. Findings: The findings show various needs for support within all three dimensions of the sense of coherence. Conclusions: The results outline key support strategies that professionals can use to build the competencies, confidence and resilience of young carers and their families.

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Family Caregiver Experience of Resistance to Care: Occurrence Patterns, Context, and Impact on Caregiver

Background: Although the extant literature identifies resistance to care (RTC) as one of the most frequently reported and impactful caregiver (CG) stressors, typical studies that rely on quantitative measures of RTC do not fully explain how and why RTC negatively influences CGs’ well-being. As such, it is difficult to develop specific intervention strategies to support CGs in dealing with RTC. Methods: Informed by existing literature and tenets from Stress Theory, the current study includes semi-structured interviews with 19 family CGs of community-dependent (non-institutionalized) elders, regarding their RTC experiences. Through a directed qualitative content analysis, we explored occurrence patterns, contextual factors of when and how RTC occurs, how CGs respond to RTC, and its potential impact on CGs’ subjective stress. Findings: The results revealed distinguishable characteristics of four types of RTC: Frequent-Pervasive, Frequent-Delimited, Transition-Activated, and Shock-to-Unfamiliar/Unexpected. Conclusions: We discuss how recognition of those types of RTC can be integrated into CG support intervention strategies. 

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Reliability, validity and acceptability of the traditional Chinese version of the carer support needs assessment tool in Hong Kong palliative care settings

Background: Among the few existing needs assessment tools for family carers, the 14-item Carer Support Needs Assessment Tool (CSNAT) is the only brief and holistic needs screening tool designed for everyday use in palliative care practices. The aim of this study was to evaluate the reliability, validity, and acceptability of the traditional Chinese version of the CSNAT in palliative care settings in Hong Kong. Methods: This adopted a cross-sectional and correlation design with repeated measures. The participants were 125 family carers of palliative cancer patients and 10 healthcare providers (HCPs) that were recruited from two local hospitals. The evaluation of psychometric properties included the following: (1) content validity through HCPs including frontline physicians, nurses, social workers, and clinical psychologists; (2) construct validity between the CSNAT items and those of the validated tools that measured caregiver burden, social support, and caregiving self-efficacy; and (3) one-week test-retest reliability in a sub-sample of 81 caregivers. The acceptability of the tool was assessed by the carers using several closed-ended questions. Results: The content validity index of the CSNAT at the scale level was 0.98. Each item of the CSNAT was significantly and moderately correlated with caregiver burden (Spearman’s r = 0.24 to 0.50) and caregiving self-efficacy (r = − 0.21 to − 0.52), but not for social support. All CSNAT items had fair to moderate test-retest reliability (weighted kappa = 0.21 to 0.48), with the exception of two items “managing your relatives’ symptoms, including giving medicines” and “having time for yourself in the day”. Regarding the acceptability of the CSNAT, almost all HCPs were willing to use the CSNAT for carer assessment and support. 89.6% of the carers demonstrated a comprehensibility of the CSNAT tool and 92.9% felt comfortable answering the questions. Around 90% of the carers agreed to use the tool for screening, discussing needs, and making referrals. Conclusion: The traditional Chinese version of the CSNAT is a tool with high validity and acceptability and adequate reliability that measures family carers’ support needs, which should be considered for wide application in local palliative care practices. 

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Care needs of dying patients and their family caregivers in hospice and palliative care in mainland China: A meta-synthesis of qualitative and quantitative studies

Objective: To investigate the care needs of dying patients and their family caregivers in hospice and palliative care in mainland China. Methods: A search for English and Chinese quantitative and qualitative studies was performed using the following English databases: PubMed (Medline), CINAHL and PsycINFO, as well as Chinese databases: SinoMed and CNKI. The records were independently screened by two reviewers and critiqued using Joanna Briggs Institute Critical Appraisal tools. All quantitative data were transformed into qualitative data, which were converted into textual descriptions. Due to the diversity of included studies, a three-step analysis was performed: Narrative summary, thematic analysis and presentation of integrated results in a narrative form. The qualitative findings were pooled using the meta-aggregation approach. Results: The literature search identified 2964 papers after removing duplicates, from which 18 were included (9 quantitative and 9 qualitative studies). All studies were conducted in mainland China. Quantitative studies involved cross-sectional surveys, and qualitative studies involved interviews for data collection. Two synthesised results of patients' needs were identified, including needs to be comfortable and experience a good death. Another two synthesised results of family caregivers' needs included needs to care for and improve the quality of life of patients, and to care for themselves well. Conclusions: This study identified that patients and family caregivers have an increasing demand for professional care at the end of life. Professionals, especially nurses, should enact a patients' demand-centred practice to overcome the challenges of organisation, education, emotion and communication to provide high-quality end-of-life care. 

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Designing a need-based program for relieving psychological distress of family caregivers of leukemia patients: a randomized controlled trial

Background: The family of leukemia patients, due to their caring role, often feels psychological distress. A practical need-based program carefully considers the set of requirements of nursing service recipients. This paper illustrates the efficacy of a designed family-need-based program on relieving stress, anxiety, and depression of family caregivers of leukemia patients. Methods: In this controlled trial, sixty-four family caregivers of leukemia patients referring to a medical center in Iran were recruited by convenience sampling and randomly divided into study and control groups. The study group attended a designed need-based program. The control group did not receive the intervention. Stress, anxiety, and depression of both groups were simultaneously measured and compared in three time-points using the scale of stress, anxiety, and depression (DASS-42). Data were analyzed using descriptive and inferential statistics. Results: Before the program, the average scores of stress, anxiety, and depression were 31.16 ± 4.14, 21.37 ± 6.31, and 27.56 ± 4.24 for the study group and 31.09 ± 4.48, 20.34 ± 6.56, and 28.78 ± 4.72 for the control group. After the program, the average scores of stress, anxiety, and depression were 10.56 ± 3.37, 6.75 ± 2.99, and 7.37 ± 2.76 for the study group and 34.87 ± 2.51, 23.65 ± 4.96, and 32.56 ± 3.49 for the control group, respectively. Results of the independent t test indicated no considerable difference before the program (P > 0.05) and a significant difference after the program (P < 0.001) between the two groups. Conclusion: This family-need-based program can decrease the level of stress, anxiety, and depression of the family caregivers of leukemia patients and may potentially alleviate the psychological distress of family caregivers over their caring role. 

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Unmet support needs in teenage and young adult childhood brain tumour survivors and their caregivers: “it’s all the aftermath, and then you’re forgotten about”

Background: Teenage and young adult (TYA) survivors of childhood brain tumours and their family caregivers can experience many late effects of treatment that can hamper the transition to living independent lives. Yet, their long-term supportive care needs are largely unknown. We investigated the supportive care needs of TYA survivors and their caregivers and explored the role and perceived use of support. Methods: Face-to-face semi-structured interviews were conducted with survivors aged 16–30 (n = 11) who were ≥ 5 years after diagnosis and caregivers (n = 11). Interviews were recorded and transcriptions thematically analysed. Results: Four themes emerged: (1) preferences for support and support services (unmet needs). Concerns regarding mental health, employment and financial uncertainty, the desire to live independently, and lack of support were emphasised. (2) Decline in support. Caregivers noted a drop-off in support available when transitioning to adult services. (3) Reasons for not obtaining adequate support. Several barriers to accessing support were raised, including distance and aging out of services. (4) The role of long-term hospital-based follow-up care. Participants highlighted the importance of, and reassurance from, long-term follow-up care but noted a more all-inclusive approach is required. Conclusions: Even many years after diagnosis, TYA childhood brain tumour survivors and their caregivers continue to have unmet supportive care needs. Both TYA survivors and their caregivers can benefit from support to meet their unique needs and improve long-term quality of life. Understanding unmet needs and recognising what services are required due to the late effects of treatment is critical to improving long-term quality of survival. 

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Can a Dyadic Resiliency Program Improve Quality of Life in Cognitively Intact Dyads of Neuro-ICU Survivors and Informal Caregivers? Results from a Pilot RCT

Background: Neuro-ICU hospitalization for an acute neurological illness is often traumatic and associated with heightened emotional distress and reduced quality of life (QoL) for both survivors and their informal caregivers (i.e., family and friends providing unpaid care). In a pilot study, we previously showed that a dyadic (survivor and caregiver together) resiliency intervention (Recovering Together [RT]) was feasible and associated with sustained improvement in emotional distress when compared with an attention placebo educational control. Here we report on changes in secondary outcomes assessing QoL. Methods: Survivors (n = 58) and informal caregivers (n = 58) completed assessments at bedside and were randomly assigned to participate together as a dyad in the RT or control intervention (both 6 weeks, two in-person sessions at bedside and four sessions via live video post discharge). We measured QoL domain scores (physical health, psychological, social relations, and environmental), general QoL, and QoL satisfaction using the World Health Organization Quality of Life Abbreviated Instrument at baseline, post treatment, and 3 months’ follow-up. We conducted mixed model analyses of variance with linear contrasts to estimate (1) within-group changes in QoL from baseline to post treatment and from post treatment to 3 months’ follow-up and (2) between-group differences in changes in QoL from baseline to post treatment and from post treatment to 3 months’ follow-up. Results: We found significant within-group improvements from baseline to post treatment among RT survivors for physical health QoL (mean difference 1.73; 95% confidence interval [CI] 0.39–3.06; p = 0.012), environmental QoL (mean difference 1.29; 95% CI 0.21–2.36; p = 0.020), general QoL (mean difference 0.55; 95% CI 0.13–0.973; p = 0.011), and QoL satisfaction (mean difference 0.87; 95% CI 0.36–1.37; p = 0.001), and those improvements sustained through the 3-month follow-up. We found no significant between-group improvements for survivors or caregivers from baseline to post treatment or from post treatment to 3 months’ follow-up for any QoL variables (i.e., domains, general QoL, and QoL satisfaction together). Conclusions: In this pilot study, we found improved QoL among survivors, but not in caregivers, who received RT and improvements sustained over time. These RT-related improvements were not significantly greater than those observed in the control. Results support a fully powered randomized controlled trial to allow for a definitive evaluation of RT-related effects among dyads of survivors of acute brain injury and their caregivers. 

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Building a research roadmap for caregiver innovation: Findings from a multi-stakeholder consultation and evaluation

Background: Across the world, informal (unpaid) caregiving has become the predominant model for community care: in the UK alone, there are an estimated 6.5 million caregivers supporting family members and friends on a regular basis, saving health and social care services approximately £132 billion per year. Despite our collective reliance on this group (particularly during the COVID-19 pandemic), quality of life for caregivers is often poor and there is an urgent need for disruptive innovations. Objectives: The aim of this study was to explore what a future roadmap for innovation could look like through a multi-stakeholder consultation and evaluation. Methods: An online survey was developed and distributed through convenience sampling, targeting both the informal caregiver and professionals/innovators interested in the caregiver demographic. Data were analysed using both quantitative (summary statistics) and qualitative (inductive thematic analysis) methods in order to develop recommendations for future multi-stakeholder collaboration and meaningful innovation. Results: The survey collected 174 responses from 112 informal caregivers and 62 professionals/innovators. Responses across these stakeholder groups identified that there is currently a missed opportunity to harness the value of the voice of the caregiver demographic. Although time and accessibility issues are considerable barriers to engagement with this stakeholder group, respondents were clear that regular contributions, ideally no more than 20 to 30 min a month could provide a realistic route for input, particularly through online approaches supported by community-based events. In conclusion, the landscape of digital health and wellness is becoming ever more sophisticated, where both industrial and academic innovators could establish new routes to identify, reach, inform, signpost, intervene and support vital and vulnerable groups such as the caregiver demographic. Conclusions: Here, the findings from a consultation with caregivers and professionals interested in informal caring are presented to help design the first stages of a roadmap through identifying priorities and actions that could help accelerate future research and policy that will lead to meaningful and innovative solutions. 

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An evaluation of natural environment interventions for informal cancer caregivers in the community

Background: Home-based informal caregiving by friends and family members of patients with cancer is becoming increasingly common globally with rates continuing to rise. Such caregiving is often emotionally and cognitively demanding, resulting in mental exhaustion and high perceived burden. Support for caregivers may be fostered by engagement with the natural environment. Interaction with nature is associated with mental health benefits such as stress reduction and improved well-being. Objectives: The purpose of this paper was to evaluate the state of the science regarding the use of natural environment interventions to support caregivers of cancer patients in the community. Methods: A compre-hensive scoping review using the Arksey and O’Malley framework and the Preferred Reporting Items for Systematic Reviews and Meta-analyses assessed natural environment therapies and mental health outcomes among cancer caregivers. Databases searched included CINAHL, PubMed, Sco-pus, Cochrane, and Alt HealthWatch. Results: Findings recovered a total of five studies over a 10-year period that met criteria, demonstrating a lack of empirical evidence addressing this potential resource to support caregivers. Often, study appraisal was not on nature exposure, but rather other aspects of the projects such as program evaluation, exercise, or complementary therapies. Both qualitative and quantitative designs were used but sample sizes were small. Conclusions: Caregivers experienced beneficial results across the various studies and future work could enhance these findings. 

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Alzheimer's Association Project VITAL: A Florida Statewide Initiative Using Technology to Impact Social Isolation and Well-Being

Background: Lack of social engagement and the resulting social isolation can have negative impacts on health and well-being, especially in senior care communities and for those living with dementia. Project VITAL leverages technology and community resources to create a network for connection, engagement, education, and support of individuals with dementia and their caregivers, and explores the impact of these interventions in reducing feelings of social isolation and increasing mood among residents during the COVID-19 pandemic. Methods: Through two phases, 600 personalized Wi-Fi-enabled iN2L tablets were distributed to 300 senior care communities (55% assisted living communities, 37% skilled nursing communities, 6% memory care communities, and 2% adult family-care homes) to connect and engage residents and their families. Different phases also included Project ECHO, a video-based learning platform, Alzheimer's Association virtual and online education and support for family caregivers, evidence-based online professional dementia care staff training and certification, and Virtual Forums designed to explore ways to build sustainable, scalable models to ensure access to support and decrease social isolation in the future. Tablet usage was collected over an 11-month period and an interim survey was designed to assess the effectiveness of the tablets, in preventing social isolation and increasing mood among residents during the COVID-19 pandemic. Results: A total of 105 care community staff (whose community used the tablets) completed the survey and overall, these staff showed a high level of agreement to statements indicating that residents struggled with loneliness and mood, and that the tablet was useful in improving loneliness and mood in residents and allowing them to stay in touch with family and friends. Additional positive results were seen through a variety of other responses around the tablets and Project ECHO. Conclusion: Overall, the tablets were shown to be an effective way to engage residents and connect them with friends and family, as well as being a useful tool for staff members. A third phase is currently underway in the homes of people with dementia and their family caregivers, which includes tablets and direct access to Alzheimer's Association virtual and online education and support programs. 

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Adaptation and learning processes of stroke survivors and family carers: a scoping review

Background: Knowledge on the processes of adaptation and learning after stroke are scarce, hindering the development of evidence-based public health strategies to promote survivors and family carers' health and wellbeing, across the post stroke trajectory. Objectives: This study aims to assess the available evidence on the processes of adaptation and learning after stroke, by mapping the main barriers and enablers according to the perspectives of stroke survivors and family carers. Methods: A scoping review was performed, following PRISMA-ScR guidelines. The electronic databases PubMed, ISI Web of Science, PsycINFO and SciELO were searched for empirical, peer-reviewed, original, and full-length studies on the processes of adaptation and learning of stroke survivors and family carers, in March 2021. Eligibility and data extraction were conducted by two independent researchers. The main qualitative data were explored by thematic content analysis and quantitative findings were synthesized. Results: The included studies, 29 qualitative and 1 quantitative, were published between 1994 and 2019. Most of the studies were carried out with small samples and without a specific focus on the adaptation and learning processes after stroke. Barriers and enablers to stroke adaptation and learning processes were influenced by physical, psychological and social characteristics. The poor physical and functional status of survivors, the inability to maintaining the Activities of Daily Living, emotional disturbances, lack of support and information, and changes in roles, were identify as main barriers to stroke adaptation. Using coping strategies and having psychological, educational, and financial support were described as enablers. Conclusions: Public health policies and practices should consider the physical, psychological and social barriers and enablers to the stroke adaptation and learning processes to ensure a high-quality long-term care centred on survivors and family carers. Key messages: Robust theoretical and methodological studies, specifically designed to deeply explore and describe the post stroke adaptation and learning processes, are needed. Understand the main barriers and enablers to adaptation and learning after stroke may be useful for developing health education interventions centred on survivors and carers preferences and needs.

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Acceptance and perception of digital health for managing nutrition in people with Parkinson's disease and their caregivers and their digital competence in the United States: A mixed‐methods study

Background and aims: This mixed‐methods study examined participants' acceptance and perception of using digital health for managing nutrition and participants' digital competence. The results will be formative for making digital nutrition education more effective and acceptable for people with Parkinson's disease (PwPD) and their informal caregivers. Methods: Qualitative data were collected through in‐person semi‐structured, dyadic interviews, and questionnaires from 20 dyads (20 PwPD and their caregivers) in the Northeastern United States and analyzed throughout the 2018 to 2019 academic year. Interview transcripts were deductively coded using the framework analysis method. Phrases related to acceptance of digital health were sub‐coded into accept, neutral, or reject and those related to perceptions of digital health were sub‐coded into perceived usefulness, perceived ease of use, and awareness of digital health. Quantitative data were analyzed using independent samples t tests and Fisher's exact tests. Qualitative codes were transformed into variables and compared to digital competence scores to integrate the data. An average acceptance rate for digital health was calculated through examining the mean percent of phrases coded as accept from interview transcripts. Results: Twenty‐five of 40 (62.5%) participants used the internet for at least 5 health‐related purposes and the average acceptance rate was 54.4%. Dyads rejected digital health devices if they did not see the added benefit. The majority of participants reported digital health to be useful, but hard to use, and about half felt they needed education about existing digital health platforms. There was no difference in digital competence scores between PwPD and their caregivers (28.6 ± 12.6). Conclusion: Findings suggest that dyads accept and use technology but not to its full potential as technology can be perceived as hard to use. This finding, combined with digital competence scores, revealed that education is warranted prior to providing a digital nutrition intervention.

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A systematic review of psychosocial interventions for Latinx and American Indian patient-family caregiver dyads coping with chronic health conditions

Background: Latinx and American Indians experience high rates of chronic health conditions. Family members play a significant role as informal caregivers for loved ones with chronic conditions and both patients and family caregivers report poor psychosocial outcomes. Objectives and Methods: This systematic review synthesizes published studies about psychosocial interventions for Latinx and American Indian care dyads to determine: (i) the benefits of these interventions; (ii) their distinguishing features or adaptations, and; (iii) recommendations for future intervention development. Findings: Out of 366 records identified, seven studies met inclusion criteria. Interventions demonstrated benefits to outcomes such as disease knowledge, caregiver self-efficacy and burden, patient and caregiver well-being, symptom distress, anxiety and depression, and dyadic communication. Distinguishing features included tailoring to cultural values, beliefs, and delivery preferences, participants’ level of acculturation, and population-specific issues such as migratory stressors and support networks. Conclusions: Based upon this review, six recommendations for future intervention development are put forth. 

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Caregiver empowerment program based on the adaptation model increase stroke family caregiver outcome

Objective: Post-stroke disability and psychosocial disorders cause burdens for the families of stroke patients, including physical and financial burdens. The physical and psychological health of family caregivers determines the quality of care they provide to patients. The purpose of this study was to identify the effectiveness of the Caregiver Empowerment Program Based on the Adaptation Model (CEP-BAM) in increasing the family caregiver's coping ability against various problems and reducing their burden while caring for the stroke patient. Methods: This research was a quasi-experimental study with pre- and post-test control group design. The intervention group received CEP-BAM, while the control group received a conventional intervention in the form of a discharge planning program for family caregivers in the hospital. The samples were caregivers who care for and facilitate the recovery of stroke patients during their convalescence at home. We selected the samples from the population using the stratified random sampling method. The number of samples completed in the study was 40 in the intervention group and 40 in the control group. Measurement of outcome variables (coping and caregiver burden) was carried out 4 times including pre-test before the intervention, post-test 1 at 4 months after the intervention, post-test 2 at 5 months after the intervention, and post-test 3 at 6 months after the intervention. Results: There were significant differences in caregiver's coping (P = 0.016) and caregiver's burden (P = 0.009) in measurements between the two groups. Conclusions: The CEP-BAM interventions were effective in increasing adaptive coping strategies and reducing the burden of caregivers 4 months and continuing 6 months after the intervention. 

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A socially prescribed community service for people living with dementia and family carers and its long‐term effects on well‐being

Background: Support services for people with dementia are variable depending on the area or town they live. People with dementia and family carers can often get very little support after a diagnosis. Services might not be suitable or they may not be aware of the service in the first place. Objective: The aim of this study was to evaluate a socially prescribed community service provided to people with dementia and family carers offering physical and mental activities. Methods: People with dementia and family carers were recruited from a community centre in the North West of England to complete in this study. Participants provided demographic information and completed the Short Warwick‐Edinburgh Mental Well‐Being Scale at baseline, and after 3 and 6 months. Postcode data were used to generate an Index of Multiple Deprivation score for information on participants’ socioeconomic background. Data were analysed using paired samples t‐tests to compare well‐being scores between baseline and follow‐up assessments. Results: A total of 25 people with dementia (n = 14) and family carers (n = 11) participated in the service. Visits ranged from 1 to 36, with 22 and 15 participants completing the 3‐ and 6‐month follow‐up respectively. Some reasons for discontinuation were lack of transport and other commitments. Most participants lived in some of the most disadvantaged neighbourhoods. Compared to baseline, well‐being was significantly higher at both follow‐ups. Conclusions: This is one of the first studies reporting the benefits of a social prescribing service in dementia. Future implementation work needs to design an implementation plan so that the service can be implemented in other community centres across the country.

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What support does a mobile, assistive app provide for informal caregivers? A qualitative analysis of the MoCaB app user experience

Background: In the joint project "Mobile Care Backup'' funded by the German Federal Ministry of Education and Research, the smartphone-based app "MoCaB'' was developed in close cooperation with informal caregivers. It provides individualized, algorithm-based information and can accompany and support caring relatives in everyday life. After a multi-step development, informal caregivers tested the MoCaB app in a home setting at the end of the research project. Objectives: The goal was to find out how the test persons evaluate MoCaB and in which form the app can provide support to informal caregivers. Methods: Eighteen test persons caring for relatives participated in a four-week test of MoCaB. Guideline-based qualitative interviews to record usage behavior and experiences with the app were conducted after two and four weeks of testing, transcribed and analyzed using qualitative content analysis. Results: The test persons described the care-related information as helpful. The individualized, algorithm-based mode of information delivery and the exercises provided for family caregivers were generally rated as helpful, but their use depends on the individual usage style. Three dimensions can describe the effects of MoCaB: 1) expansion of care-relevant knowledge, 2) stimulation of self-reflection, and 3) behavior towards the care recipients. Discussion: With few exceptions, the testing caregivers felt that the MoCaB app was enriching. The support dimensions have an effect at different points in everyday life and vary in intensity, depending on the duration of the existing care activity and the individual preferences of the users. Conclusion: The way in which caregivers used the app was not always consistent with the expected behaviors. This demonstrates the relevance of open-ended, qualitative research methods in the evaluation of health apps.

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A qualitative exploration of the unmet information needs of Chinese advanced cancer patients and their informal caregivers

Background: Studies in the West have demonstrated that appropriate informational support is a vital component of cancer care, with positive effects on both patients and their informal caregivers. Since little is known about the information needs of advanced cancer patients and informal caregivers in China, where ‘silence as virtue’ is much more valued and the communication style is less open, this study was therefore conducted to elaborate the information needs of advanced cancer patients and informal caregivers as well as to explore their perceptions and experiences regarding their unmet information needs in the Chinese context. Methods: This sub-study of a previous cross-sectional survey utilized a qualitative descriptive study design. The approach involved semi-structured interviews that followed an interview guide to collect data. Eligible participants were the advanced cancer patients and informal caregivers who had participated in the previous cross-sectional survey and reported unmet information needs. Each interview was audio-recorded and transcribed verbatim. Descriptive content analysis was used to analyze the data. Results: Seventeen advanced cancer patients and 15 informal caregivers with unmet information needs participated in the semi-structured interviews, with ages ranging from 32 to 63 years old for patients and from 32 to 70 for informal caregivers. Four categories were extracted from the interviews with the patients and caregivers: (1) types of unmet information needs; (2) reasons for information needs not being met; (3) preferences for the provision of information; and (4) meaning and role of information. Each category had two to four sub-categories for both the patients and the caregivers, which were similar but not completely the same. Conclusion: The findings indicated that the provision of appropriate information could promote informed decision-making and greater satisfaction with treatment options, reductions in psychological disturbances, and enhanced confidence and ability in self-management and capacity in caregiving. Moreover, information on Traditional Chinese Medicine and food therapy should be increased, particularly for patients at the follow-up stage, while the amount of information on prognosis should be flexible as it could increase patients’ and caregivers’ psychological burden. Healthcare professionals were the most preferred information provider, although their heavy workload resulted in time constraints. In this case, they should provide information to patients and caregivers together as a ‘whole unit.’ At the same time, the value of separate conversations should also be recognized as some caregivers preferred to conceal unpleasant information from the patient. 

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A Novel Mobile App ("CareFit") to Support Informal Caregivers to Undertake Regular Physical Activity from Home during and beyond COVID-19 Restrictions: Co-design and Prototype Development Study

Background: Informal caregivers, or carers (unpaid family members and friends), are instrumental to millions worldwide for the ongoing delivery of health and well-being needs. The risk of crisis points (eg, hospitalizations) for caregivers increases with the absence of physical activity. The COVID-19 pandemic is highly likely to have increased the risk of crisis points for caregivers by increasing the amount of time spent indoors due to shielding and lockdown restrictions. Thus, accessible evidence-based tools to facilitate physical activity for caregivers indoors are urgently needed. Objective: The aim of this study was to co-design and develop a novel mobile app to educate and support carers in the undertaking of regular physical activity at home during and beyond COVID-19 restrictions via integration of the transtheoretical model of behavior change and UK physical activity guidelines. Methods: We co-designed a mobile app, "CareFit," by directly involving caregivers, health care professionals, and social care professionals in the requirements, capturing, and evaluation phases of three Agile Scrum design and development sprints. Seven participants representing multistakeholder views took part in three co-design sessions, each of which was followed by a development sprint. Requirements for CareFit were grounded in a combination of behavioral change science and UK government guidelines for physical activity. Results: Participants identified different barriers and enablers to physical activity, such as a lack of time, recognition of existing activities, and concerns regarding safely undertaking physical activity. Requirements analysis highlighted the importance of simplicity in design and a need to anchor development around the everyday needs of caregivers (eg, easy-To-use video instructions). Our final prototype app integrated guidance for undertaking physical activity at home through educational, physical activity, and communication components. Conclusions: Integrating government guidelines with models of behavioral change into a mobile app to support the physical activity of carers is novel. We found that integrating core physical activity guidelines into a co-designed smartphone app with functionality such as a weekly planner and educational material for users is feasible. This work holds promise to fill the gap of effective physical activity solutions for caregivers both during and beyond the COVID-19 pandemic. Further work is now needed to explore the feasibility, acceptability, and usability of the approach in real-world settings. 

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Factors associated with carer psychological and physical health during end-of-life caregiving: An observational analysis of a population-based post-bereavement survey of carers of people with cancer

Objective: Family caregivers play an essential role in end-of-life care but suffer considerable impact on their own health. A better understanding of main factors related to carers' health is important to inform interventions. The purpose of the study was to test for the first time the potential impact of a comprehensive set of observable variables on carer health during end-of-life caregiving within a population-based carer sample. Design National retrospective, cross-sectional, 4-month post-bereavement postal census survey of family carers of people who died from cancer. Methods: Relatives who registered a death from cancer during a 2-week period in England were identified from death certificates by the Office of National Statistics; response rate was 1504/5271 (28.5%). Outcome measures Carers' mental health was measured through General Health Questionnaire (GHQ)-12; general health was measured through EuroQoL EQ-Visual Analogue Scale (EQ-5D VAS). Methods Survey questions to measure potential variables associated with carer health were based on past research and covered patients' symptoms and functioning; caregiving activities and hours; informal and formal help received; work hours, other caregiving, volunteering; changes to work, income and expenditure; sleep and relaxation; and demographic variables. Bivariate analyses and ordinary least square regression were performed to investigate these variables' relationship with outcomes. Results: Patients' psychological symptoms and functioning, caregiving hours, female gender and self-sought formal help related to worse mental health. General practitioner and social care input and relaxation related to better mental health. Patients' psychological symptoms, caregiving hours and female gender were associated with worse general health, and older age, employment and relaxation were associated with better general health. Conclusions: Improvements in carers' health overall may be made by focusing on potential impacts of patients' psychological symptoms on carers, facilitating respite and relaxation, and paying particular attention to factors affecting female carers. 

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Integrated dementia care: A qualitative evidence synthesis of the experiences of people living with dementia, informal carers and healthcare professionals

Background: In order to provide improved care provision, integrated care services are being developed. However, little is known about how people living with dementia, their families and healthcare professionals experience integrated care. Therefore, the purpose of this review of the qualitative literature was to examine the experiences and perceptions of integrated dementia care. Methods: This qualitative review synthesised findings from included studies identified from a comprehensive literature search. Searches included: five electronic databases, journal handsearching, and reference list searching of relevant literature reviews and the final included studies. Findings: Three overarching themes were identified: 1) Ways of working which facilitate the delivery of integrated dementia care; 2) Informal carers as equal partners in care provision and decision making; and 3) Challenges leading to fragmented and disjointed integrated dementia care. For integrated care to be successful, communication and collaboration between healthcare professionals, and the involvement of informal carers is needed. Multidisciplinary teams and employing case managers to coordinate care provision can improve communication and collaboration. However, distrust between healthcare professionals and a lack of a central database to access and share information often hinders the development of integrated dementia care service provision. Conclusion: Integrated dementia care can be successful and well received by people living with dementia and their families when certain conditions are met. However, given the negative consequences fragmented and disjointed care can have on people living with dementia and their families, action is needed to further support the development of integrated dementia care services. 

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A cluster randomized controlled trial comparing Virtual Learning Collaborative and Technical Assistance strategies to implement an early palliative care program for patients with advanced cancer and their caregivers: a study protocol

Background: Virtual Learning Collaboratives (VLC), learning communities focused on a common purpose, are used frequently in healthcare settings to implement best practices. Yet, there is limited research testing the effectiveness of this approach compared to other implementation strategies. Objective: This study evaluates the effectiveness of a VLC compared to Technical Assistance (TA) among community oncology practices implementing ENABLE (Educate, Nurture, Advise, Before Life Ends), an evidence-based, early palliative care telehealth, psycho-educational intervention for patients with newly diagnosed advanced cancer and their caregivers. Methods: Using Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) and Proctor’s Implementation Outcomes Frameworks, this two-arm hybrid type-III cluster-randomized controlled trial (RCT) will compare two implementation strategies, VLC versus TA, among the 48 National Cancer Institute Community Oncology Research Program (NCORP) practice clusters that have not historically provided palliative care to all patients with advanced cancer. Three cohorts of practice clusters will be randomized to the study arms. Each practice cluster will recruit 15–27 patients and a family caregiver to participate in ENABLE. The primary study outcome is ENABLE uptake (patient level), i.e., the proportion of eligible patients who complete the ENABLE program (receive a palliative care assessment and complete the six ENABLE sessions over 12 weeks). The secondary outcome is overall program implementation (practice cluster level), as measured by the General Organizational Index at baseline, 6, and 12 months. Exploratory aims assess patient and caregiver mood and quality of life outcomes at baseline, 12, and 24 weeks. Practice cluster randomization will seek to keep the proportion of rural practices, practice sizes, and minority patients seen within each practice balanced across the two study arms. Discussion: This study will advance the field of implementation science by evaluating VLC effectiveness, a commonly used but understudied, implementation strategy. The study will advance the field of palliative care by building the capacity and infrastructure to implement an early palliative care program in community oncology practices. Trial registration: Clinicaltrials.gov. NCT04062552; Pre-results. 

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A scoping review of unmet needs of caregivers of patients with pulmonary fibrosis

Background: Pulmonary fibrosis is an incurable lung disease that leads to significant morbidity. In many patients, pulmonary fibrosis is progressive causing debilitating dyspnea that impairs patients' ability to perform everyday tasks and maintain independence. Informal caregivers provide invaluable support for patients with pulmonary fibrosis; however, support for the caregiver is inadequate. Objective: The purpose of this scoping review is to identify unmet needs for caregivers of pulmonary fibrosis patients. Findings: During the past 18 months, there has been an increase in studies about the impact of pulmonary fibrosis on the caregiver or carer of the patient with pulmonary fibrosis. These carers experience caregiver burden which includes negative psychological and physical effects on caregiver health because of the challenge in caring for someone with pulmonary fibrosis. Caregivers describe the need for help navigating the healthcare system. This includes supportive and informational needs, lack of access to comprehensive patient-centred care, geographically accessible specialty centres and psychological support for both patient and caregiver. 

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

Background: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

Background: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

Background: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

Background: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.

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The COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia – a qualitative study

Background: Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. Objectives: The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. Methods: The study had a qualitative descriptive design using individual telephone interviews for data collection. A total sample of 17 spouses of people with dementia were included, 14 women and three men ages 52 to 82 years. A qualitative content analysis following six steps inspired by Graneheim and Lundman was used to identify the categories presented. Results: The participants emphasized four main perspectives: 1) Radical changes in available services, 2) Restrictions changed everyday life, 3) Impacts on health and well-being, and 4) Actions that made life easier. The participants also described how positive activities and easily accessible services helped them in this situation. Conclusions: The governmental restrictions of the COVID-19 pandemic resulted in radical changes in available services with severe consequences for the lives and well-being of home-dwelling people with dementia and their spouses. Examples of coping strategies and possible psychosocial interventions compatible with virus precautions were identified. The potential of such interventions should be further explored to meet the needs of vulnerable groups in situations like a pandemic. 

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The social burden experienced by families caring for members living with cancer in KwaZulu-Natal, South Africa

Background: Cancer is a global public health problem and it affects people in different ways. Family caregivers (FCs) play an essential role in caring for patients with cancer, and thus, they experience many caregiver burdens that go unnoticed. Aim: This research study explored the social burden that families experience in providing care to their family members living with cancer. Setting: This study was conducted in Durban and Pietermaritzburg, cities located in KwaZuluNatal, South Africa. Methods: This was a qualitative study using the interpretative phenomenological approach that was ideal for understanding FCs subjective perspectives on their cancer caregiving experience. Data saturation were reached at 20 in-depth interviews. Results: Two major themes culminated from the data analysis; dynamics of a cancer diagnosis and psychosocial impact of a cancer diagnosis with respective sub-themes. Themes centred around the relational impact of a cancer diagnosis with FCs experiencing a shift in this dynamic and a disturbance to normality in social life. Social support systems were found to play a meaningful role in mitigating the impact of a cancer diagnosis with financial, psychosocial and educational support considered essential needs. Conclusion: Cancer caregiving is a challenging task that also presents opportunities for strengthening family bonds as they evolve in new paths. A family-centred care approach is recommended as a form of social support with further collaboration with health care providers for guided patient care. If the needs of FCs are addressed accordingly through health care policies and interventions, FCs may be able to provide better care and support for their family members with cancer and thus positively impact cancer survivorship.

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Peer support interventions for parents and carers of children with complex needs

Background: Parents and family carers of children with complex needs experience a high level of pressure to meet children's needs while maintaining family functioning and, as a consequence, often experience reduced well-being and elevated psychological distress. Peer support interventions are intended to improve parent and carer well-being by enhancing the social support available to them. Support may be delivered via peer mentoring or through support groups (peer or facilitator led). Peer support interventions are widely available, but the potential benefits and risks of such interventions are not well established. Objectives: To assess the effects of peer support interventions (compared to usual care or alternate interventions) on psychological and psychosocial outcomes, including adverse outcomes, for parents and other family carers of children with complex needs in any setting. Search methods: We searched the following resources. • Cochrane Central Register of Controlled Trials (CENTRAL; latest issue: April 2014), in the Cochrane Library. • MEDLINE (OvidSP) (1966 to 19 March 2014). • Embase (OvidSP) (1974 to 18 March 2014). • Journals@OVID (22 April 2014). • PsycINFO (OvidSP) (1887 to 19 March 2014). • BiblioMap (EPPI-Centre, Health Promotion Research database) (22 April 2014). • ProQuest Dissertations and Theses (26 May 2014). • metaRegister of Controlled Trials (13 May 2014). We conducted a search update of the following databases. • MEDLINE (OvidSP) (2013 to 20 February 2018) (search overlapped to 2013). • PsycINFO (ProQuest) (2013 to 20 February 2018). • Embase (Elsevier) (2013 to 21 February 2018). We handsearched the reference lists of included studies and four key journals (European Child and Adolescent Psychiatry: 31 March 2015; Journal of Autism and Developmental Disorders: 30 March 2015; Diabetes Educator: 7 April 2015; Journal of Intellectual Disability Research: 13 April 2015). We contacted key investigators and consulted key advocacy groups for advice on identifying unpublished data. We ran updated searches on 14 August 2019 and on 25 May 2021. Studies identified in these searches as eligible for full-text review are listed as "Studies awaiting classification" and will be assessed in a future update. Selection criteria: Randomised and cluster randomised controlled trials (RCTs and cluster RCTs) and quasi-RCTs were eligible for inclusion. Controlled before-and-after and interrupted time series studies were eligible for inclusion if they met criteria set by the Cochrane Effective Practice and Organisation of Care Review Group. The comparator could be usual care or an alternative intervention. The population eligible for inclusion consisted of parents and other family carers of children with any complex needs. We applied no restriction on setting. Data collection and analysis: Inclusion decisions were made independently by two authors, with differences resolved by a third author. Extraction to data extraction templates was conducted independently by two authors and cross-checked. Risk of bias assessments were made independently by two authors and were reported according to Cochrane guidelines. All measures of treatment effect were continuous and were analysed in Review Manager version 5.3. GRADE assessments were undertaken independently by two review authors, with differences resolved by discussion. Main results: We included 22 studies (21 RCTs, 1 quasi-RCT) of 2404 participants. Sixteen studies compared peer support to usual care; three studies compared peer support to an alternative intervention and to usual care but only data from the usual care arm contributed to results; and three studies compared peer support to an alternative intervention only. We judged risk of bias as moderate to high across all studies, particularly for selection, performance, and detection bias. Included studies contributed data to seven effect estimates compared to usual care: psychological distress (standardised mean difference (SMD) -0.10, 95% confidence interval (CI) -0.32 to 0.11; 8 studies, 864 articipants), confidence and self-efficacy (SMD 0.04, 95% CI -0.14 to 0.21; 8 studies, 542 participants), perception of coping (SMD -0.08, 95% CI -0.38 to 0.21; 3 studies, 293 participants), quality of life and life satisfaction (SMD 0.03, 95% CI -0.32 to 0.38; 2 studies, 143 participants), family functioning (SMD 0.15, 95% CI -0.09 to 0.38; 4 studies, 272 participants), perceived social support (SMD 0.31, 95% CI -0.15 to 0.77; 4 studies, 191 participants), and confidence and skill in navigating medical services (SMD 0.05, 95% CI -0.17 to 0.28; 4 studies, 304 participants). In comparisons to alternative interventions, one pooled effect estimate was possible: psychological distress (SMD 0.2, 95% CI -0.38 to 0.79; 2 studies, 95 participants). No studies reported on adverse outcomes. All narratively synthesised data for psychological distress (compared to usual care - 2 studies), family functioning (compared to usual care - 1 study; compared to an alternative intervention - 1 study), perceived social support (compared to usual care - 2 studies), and self-efficacy (compared to alternative interventions - 1 study) were equivocal. Comparisons with usual care showed no difference between intervention and control groups (perceived social support), some effect over time for both groups but more effect for intervention (distress), or mixed effects for intervention (family function). Comparisons with alternative interventions showed no difference between the intervention of interest and the alternative. This may indicate similar effects to the intervention of interest or lack of effect of both, and we are uncertain which option is likely. We found no clear evidence of effects of peer support interventions on any parent outcome, for any comparator; however, the certainty of evidence for each outcome was low to very low, and true effects may differ substantially from those reported here. We found no evidence of adverse events such as mood contagion, negative group interactions, or worsened psychological health. Qualitative data suggest that parents and carers value peer support interventions and appreciate emotional support. Conclusions: Parents and carers of children with complex needs perceive peer support interventions as valuable, but this review found no evidence of either benefit or harm. Currently, there is uncertainty about the effects of peer support interventions for parents and carers of children with complex needs. However, given the overall low to very low certainty of available evidence, our estimates showing no effects of interventions may very well change with further research of higher quality. 

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Scoping review: Health needs of the family caregivers of elderly stroke survivors

Background: This scoping review mapped out the relevant literature, identified gaps and made suggestions on the subject of the health needs of family caregivers (FC) of elderly stroke survivors (ESS). Methods: The authors utilised the PRISMA‐ScR checklist to guide the scoping review. The databases PubMed, Elsevier and BioMed Central were searched for academic articles published in the English Language between the years 2010 and 2020 that met a pre‐set criteria of content on the health needs of FC of ESS. The process of selection of sources of evidence based on screening and eligibility of evidence reduced the initially identified 13,303 sources of evidence in the searched databases to five sources of evidence. The content of these five sources of evidence was mapped out on a charting table where data was summarised and synthesised first individually and then collectively by the authors. Repetitive and irrelevant data were removed collectively by the authors from the charting table. Findings: The gaps identified were a paucity of research on the subject of health needs of FC of ESS, lack of longitudinal and mixed‐methods research on the health needs of FC of ESS, sparse use of social sciences perspectives and theories, research that addresses specific physical and mental health concerns beyond general descriptions and gaps in information, social networks, interventions, health policy and systems. Conclusions: Future research directions were suggested and a limitation of this scoping review are addressed in the discussion.

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Psychosocial outcomes of dyadic arts interventions for people with a dementia and their informal caregivers: A systematic review

Background: Dementia is a neurodegenerative syndrome that can lead to profound psychological and social challenges for people with dementia and their informal caregivers. Previous research has found positive effects of arts‐based interventions for people with dementia and caregivers that have been dyadic in nature and the present article sought to review these findings. Methods: A systematic literature review was conducted to investigate psychosocial outcomes of dyadic arts interventions. PsychINFO, Medline, Web of Science and ASSIA databases (from journal inception to March 2020) were searched as well as Google Scholar and reference lists of relevant studies were searched. Interventions were delivered to people with dementia and their caregivers in community‐based settings across five countries. Findings: Thirteen peer‐reviewed journal articles met the criteria for inclusion in this review, six focusing on performing arts and seven on visual arts. The findings suggested that choral singing and visual arts interventions may have positive effects on psychosocial outcomes for both people with dementia and their informal caregivers. Improved well‐being, quality of life, mood, enhanced identity and decreased social isolation were found in some studies. Importantly, across all studies, participants reported enjoying arts activities. This is the first review to systematically assess dyadic arts activities in a dementia context. These activities offer enjoyable and engaging experiences for many person with dementia and caregivers and were generally found to have positive results but mostly small sample size, lack of control groups and different outcome measures made comparisons challenging. Conclusions: Future research recommendations include further theoretical development, identifying key intervention components, and specifying relevant and measurable theoretically informed outcomes within dyadic interventions for this population.

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Dementia care in China: Challenges and recommendations

Background: In China, approximately 84.9% of people with dementia are cared for by family caregivers. Health professionals working in the departments where people with dementia are cared for in public tertiary hospitals are the primary sources to offer a formal diagnosis and treatment to people with dementia in China. Objective: The aim of this study was to explore family caregivers' expectations on dementia care, and the dementia knowledge and attitudes of health professionals in China. Method: Mixed method was used to collect data from April to December 2019. Surveys were used to evaluate health professionals' (n=603) dementia knowledge and attitudes in eleven public tertiary hospitals in Hebei Province in China. Semi-structured interviews were conducted in three public tertiary hospitals where family caregivers of people with dementia (n=21) were recruited. Result: The health professionals demonstrated limited knowledge of dementia and a low level of positive attitude. They expressed that it was challenging to communicate with people with dementia and to cope with their symptoms. Family caregivers reported that they received limited support from the community, hospital, and society and they held little hope of receiving such support. Most of the caregivers expected more financial support from the government, and more training in dementia care from health professionals. They also expressed their desire to have a professional caregiver in the nursing homes to provide optimal dementia care for their relatives. Conclusion: Health services in China are inadequately prepared to deal with the challenges of dementia care. More emphasis is needed on specialized education and training for caregivers and health professionals to improve their knowledge and to modify their attitudes. Family caregivers expected more support from the health system to enable improved care for people with dementia. An integrated health system for dementia care is needed in China. 

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Co‐production in coping with care dependency in Germany: How can integrated local care centres contribute?

Background: In Germany, most care dependent people are looked after by family members at home. Professional support can help ease the burden of caring relatives and stabilise home care. Ideally, care then is provided through the co‐production of formal and informal caregivers. Objective: This article analyses how care dependent people and their family caregivers integrate professional support into their care arrangements. Methods: An analysis was conducted using data collected for a qualitative study evaluating integrated local care centres in North‐Rhine‐Westphalia, Germany. The study is based on episodic interviews with users of these care centres and their family caregivers (N = 26). Findings: During the analysis, three interpretive and practice patterns relating to co‐production of care were identified. These patterns reveal how the interviewees deal with (increasing) needs for assistance and care while incorporating professional care into their lives. The patterns help differentiate whether the interviewees (a) use developed care skills to contribute actively to the co‐production with their layman knowledge, or (b) seek relief of their care responsibilities and withdraw temporarily from the direct sphere of care applying freed capacities to organise family daily life, or (c) use the services of the care centres to meet with other older people and to develop spaces for mutual help and co‐production. The interpretive and practice patterns thus differ in the extent to which care users and family caregivers continue to play an ‘active role’ in the care process and contribute their own knowledge, ideas, expectations and particular care activities. Conclusions: In order to achieve a functioning co‐production, professionals face the challenge of understanding these patterns that have been established over many years and of taking them into account appropriately.

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Choral Singing Enriches Everyday Life for People With Mild to Moderate Dementia and Their Family Caregivers

Background: Dementia causes substantial suffering for affected persons and their family caregivers. Because no cure is available, it is important to investigate how alternative therapies can improve life for these individuals. Methods: For the current study, persons with dementia (PwD) were recruited from a specialized Memory Clinic in Sweden to engage in a choral singing intervention for 1 hour per week for four semesters. PwD were encouraged to bring a family caregiver to the sessions; both were interviewed and data were analyzed using qualitative content analysis. Findings: The choral singing intervention appeared to become an important social context for PwD and family caregivers and had a positive impact on relationship, mental well-being, mood, and memory. The intervention appeared to act as an enriched environment for all participants. Conclusions: Choral singing interventions for PwD and their family caregivers is a simple means to create a social context and improve general well-being. 

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Carers and higher education: Where next?

Background: Although widening access policies have led to greater prioritisation of carers in higher education, strategies to address their needs remain underdeveloped. Objective: This paper puts forward a dual approach to progressing this agenda that recognises all students who have or have had experience of caring. Methods: Using an established theoretical lens on retention, institutional strategies for improving the success of carers studying in higher education are proposed. These strategies include flexible study programmes; affordances for social engagement; recognising carers' unique career trajectories: providing financial aid and advice; and establishing systems to identify student carers. The second element of the dual approach focuses on improving and extending the currently very limited evidence base on carers and higher education so that it can underpin and progress the development of effective strategies and initiatives. Central to this is the universal adoption of the term 'caring-experienced students'; local and national student carer registration and record-keeping systems; sensitivity to differences within the caring-experienced student population; adoption of a strengthsbased framing of caring-experienced students; and establishing knowledge exchange mechanisms to share new knowledge. Conclusions: The analysis presented aims to stimulate thinking and serves as a timely steer for further debate about carers' participation and retention in higher education. 

 

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Effectiveness of Multicomponent Intervention on Quality of Life of Family Caregivers of Cancer Patients

Objective: The study aimed to determine the effectiveness of the multicomponent intervention on Quality of life (QOL) of family caregivers of cancer patients. Methodology: A Quasi-experimental study with pre and post-test measures was conducted among 200 caregivers of cancer patients selected by convenient sampling technique. The experimental group received the intervention, and no intervention was given for the control group during the study period. The data were collected from family members looking after the cancer patients diagnosed with breast/head & neck cancers and who were in the third and fourth stages of cancer. After the pre-test, provided multicomponent intervention (Pranayama, yogic relaxation, counselling and Education) and a post-test was conducted at the first month & third month. The obtained data were analysed and inferred using descriptive and inferential statistics to compare the outcomes among the groups. Result: Most of the caregivers belong to the age group of 31 to 40 years in the intervention group (31%) and in the control group (35%), 31% of them had their education up to a primary level in both the groups and most of the caregivers were spouses (49%). Regarding the QOL of family members, improvement was noted from baseline 66.66 to 126.82 (3 months) among the intervention group, and in the control group, mean QOL enhanced from 59.77 to 81.97. Repeated measure ANOVA was computed to analyse difference within and between the groups and it showed that the intervention program was efficacious in enhancing the QOL of family caregivers of cancer patients (F (1, 191) =639.02, p=.001). Conclusion: Nurses play a vibrant role in improving the Quality of life of family members of cancer patients since they are mostly involved in providing care. Health care system must ensure that the family members who provide care to the cancer patients receive appropriate teaching programmes on reducing their burden. 

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Educational intervention to improve palliative care knowledge among informal caregivers of cognitively impaired older adults

Objective: Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults. Method: Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test. Results: There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05). Significance of results: This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.

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Cancer Caregiving While Employed: Caregiving Roles, Employment Adjustments, Employer Assistance, and Preferences for Support

Background: Cancer patients commonly require assistance from a relative or friend, and many of these “family caregivers” are navigating employment while caring. Objectives: The purpose of this analysis was to understand the experience of employment while providing care to someone with cancer, including these caregivers’ roles and burden, adjustments made to employment, assistance provided by employers, and preferences for employment and financial support. To further highlight this group of cancer caregivers, we compare it with (1) cancer caregivers who were not employed while caring; (2) caregivers for patients with a primary condition other than cancer who were employed while caring; and (3) caregivers for patients with a primary condition other than cancer who were not employed while caring. Methods: This secondary analysis is drawn from the National Alliance for Caregiving’s (NAC)/AARP Caregiving in the US dataset of unpaid adult (i.e., age 18 and older) caregivers. Half of the cancer caregivers were employed while providing care, and these employed caregivers were significantly more likely to be younger than those non-employed while caring. Findings: The employed cancer caregivers provided significantly fewer hours of care per week on average than those non-employed (23.4 vs. 42.5 h/week) but provided a nearly equivalent number of ADLs on average. Nearly half (48%) of the employed cancer caregivers reported coming in late to work, leaving early, or taking off work to accommodate caregiving, while 24% cut back on hours at work or went from full-time to part-time employment and 11% retired early or quit work entirely. The employed cancer caregivers (excluding self-employed) indicated having access to flexible working hours (57%) or paid sick leave (48%), and most (73%) reported that their supervisor was aware of their caregiving role, which was significantly higher than employed non-cancer caregivers (55%). These findings suggest that balancing work and cancer caregiving is especially prevalent among younger caregivers, and that work adjustments are needed but that the cancer caregiving role might be more commonly discussed or shared with supervisors. Conclusions: These findings suggest the need to develop workplace educational resources for employees caring for a cancer patient but also for supervisors to enhance their understanding of caregiver strain, workload, and work-based strategies to assist cancer caregivers. 

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Associations between perceived stress and quality of life in gynaecologic cancer patient-family caregiver dyads

Purpose: This study aims to explore the level of stress perceived and quality of life (QOL) by gynaecologic cancer (GC) patients and family caregivers’ dyads. Methods: In this cross-sectional study, 86 dyads were recruited from the gynaecological oncology department of a general hospital in Taichung City, Taiwan. The patients and family caregivers completed a sociodemographic information sheet, the Perceived Stress Scale, and the Taiwanese version of World Health Organization Quality of Life-BREF questionnaire. Data were analysed using descriptive statistics and Pearson's correlations. This study used the actor-partner interdependence model (APIM) with distinguishable dyads to examine the effect of patients' and caregivers' perceived stress on QOL in patient-caregiver dyads. Results: GC patients' and caregivers' level of QOL was influenced by their own stress level (actor effect). Caregivers' stress was statistically negatively associated with the patients’ QOL (partner effect); however, there were no partner effect from GC patients to caregivers. Both patients and family caregivers with higher perceived stress had poorer QOL. Therefore, we identified that stress has some level of actor and partner effects on QOL in GC patient-family caregiver dyads. Conclusions: Family caregivers' stress displayed both actor and partner effects within the first year of the cancer diagnosis; therefore, patient-and caregiver-based interventions, such as stress reduction strategies, should be developed to enhance patients' and caregivers’ QOL and stress management ability. 

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Assessing psychosocial interventions for informal caregivers of older people with early dementia: A systematic review of randomized controlled evidence

Background: Dementia affects not only the patients, but also the caregivers. Timely targeted supporting for informal caregivers of people with dementia can improve their health and life quality, as well as contribute to sustainable healthcare. However, which interventions could efficiently support them and why still remains unclear. Objectives: This systematic review aims to close this gap by critically assessing the current state of randomized controlled evidence concerning informal caregivers of older people with early dementia. Methods: We searched the electronic databases PubMed, CINAHL, Embase, Cochrane and Web of Science and assessed the methodological quality of the selected studies using the validated PEDro scale. A total of 2067 studies were identified in the initial searching, and 29 randomized controlled studies were finally selected based on the rigorous inclusion and exclusion criteria. Conclusions: Through completely assessing the methodological quality of studies, and the essentials and effectiveness of the 22 different types of interventions, we identified which interventions were effective and why. Timely targeted interventions for this caregiver group remains scarce. Furthermore, we highlight that there is a lack of systematic caregiver needs assessments prior to or when delivering the interventions. 

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A group respite pilot project for children with special needs

Background: Providing ongoing care for a family member or loved one with special needs is challenging. It is estimated that about 21% of the adult population in the United States are providing unpaid care for loved ones at home. Of that group, 5.7% are caring for children with special needs. Special needs can range from developmental delay to the provision of complex medical treatments. Family caregivers take on numerous roles to coordinate activities of daily living, therapies, in‐home services, school, and appointments. This is often a great source of stress on family caregivers. Providing the proper support for care to remain at home reduces the disruption to children and families’ lives (Carter et al., 2012). Methods: A pilot project was developed for children with physical, cognitive, and/or developmental impairment. This project was coordinated by nursing and physical therapy faculty and their students. Parents as well as nursing and physical therapy students benefited mutually. Findings: Our preliminary responses from families indicated stress relief from caregiving and benefiting from the ability to talk to other parents in similar circumstances.

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A comprehensive assessment of informal caregivers of patients in a primary healthcare home-care program

Background: Studies of the characteristics of informal caregivers and associated factors have focused on care-receiver disease or caregiver social and psychological traits; however, an integral description may provide better understanding of informal caregivers’ problems. Methods: A multicenter cross-sectional study in primary healthcare centers was performed in Barcelona (Spain). Participants were a random sample of informal caregivers of patients in a home-care program. Findings: Primary outcomes were health-related quality of life and caregiver burden, and related factors were sociodemographic data, clinical and risk factors, social support and social characteristics, use of healthcare services, and care receivers’ status. In total, 104 informal caregivers were included (mean age 68.25 years); 81.73% were female, 54.81% were retired, 58.65% had high comorbidity, and 48.08% of care receivers had severe dependence. Adjusted multivariate regression models showed health-related quality of life and the caregivers’ burden were affected by comorbidity, age, time of care, and dependency of care receiver, while social support and depression also showed relative importance. Aging, chronic diseases, and comorbidity should be included when explaining informal caregivers’ health status and wellbeing. Conclusions: The effectiveness of interventions to support informal caregivers should comprehensively evaluate caregivers when designing programs, centering interventions on informal caregivers and not care receivers’ conditions. : 

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A Biopsychosocial-Ecological Framework for Family-Framed Dementia Care

Background: The biopsychosocial model has been applied through collaborative care dementia models to the diagnosis, symptom management, and treatment of dementia with a focus specifically on the person with dementia. Because individuals with dementia are increasingly dependent upon others particularly as the illness advances, dementia care requires the involvement and commitment of others, usually family, along with support from community-based resources. Hence, the quality and effectiveness of a person's dementia care are shaped in large part by the foundation of family relationships and the social and community networks in which they are embedded. While most current dementia care models incorporate biopsychosocial principles and recognize the essential role that family members play as caregivers, they fail to consider a patient's family system and relationships as potential risk factors or social determinants for care outcomes. Objective: This paper introduces a biopsychosocial-ecological framework to dementia care that is person-centered and “family-framed” in that it targets factors that influence care considerations at both the individual and relational levels of the social ecological networks that the patient and their family members occupy. Method and Findings: We use this model to illustrate how current dementia care practices tend to focus exclusively on the individual patient and caregiver levels but fail to identify and address important relational considerations that cut across levels. Conclusions: We call for the need to add assessment of family relational histories of persons with dementia and family members who care for them in order to better meet the needs of the patient and the caregiver and to prevent harm. This model accentuates the need for interprofessional education on family assessments and caregiver-centered care, as well as interdisciplinary, collaborative models of dementia care that assume more accountability for meeting the needs of family caregivers in addition to those of persons with dementia. 

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“What do we fear the most?”: Exploring fears and concerns of patients, family members and dyads in end‐stage renal disease

Background: End‐stage renal disease (ESRD) and the need for haemodialysis (HD) treatment are increasing. The course of the disease and all the life readjustments needed may generate a multitude of fears in patients and families.AimThis study aimed to explore the main fears and concerns of patients with ESRD undergoing HD and their family members. Methods: A qualitative study was performed.MethodsIndividual semi‐structured interviews were conducted with three groups: 20 patients, 14 family caregivers and 15 patient–family dyads. Interviews were audiotaped, transcribed verbatim and submitted to thematic analysis. Findings: Five major themes emerged: (i) fear of death (fear of earlier death, fear of a sudden death and fear of dying); (ii) fear of problems during HD (fears related to the vascular access, and fear of complications during HD); (iii) concerns related to the disease (fear of loss of autonomy, fears of getting worse, fears related to renal transplantation and concerns about dietary restrictions); (iv) fear about the future; and (v) absence of fears and concerns. Conclusion: Patients with ESRD undergoing HD and their family members expressed different fears related to the disease and the treatments required. Renal care staff must acknowledge and understand such concerns and help patients and families to cope. This is important to improving people's quality of life (QoL), the dialogue between health professionals, patients, and family members, and the care offered by the dialysis care settings. Moreover, this study highlights the impact this disease has at a familial level. Future family‐based interventions should acknowledge possible fears and concerns of this population and integrate them into their programs.

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Care without sufficient knowledge of people with home enteral tube feeding: A qualitative study

Objectives: This study aimed to explore family caregivers experiences with tube feeding at home in Iran. Methods: This qualitative study was conducted with purposefully selected family caregivers who participated in an in-depth, semi-structured, face-To-face interview. Data analysis was performed through content analysis and rigor was investigated. Results: In total, 20 caregivers were interviewed. Two main categories were found in the interview data: abandoned training and lack of knowledge of nutrition . Participants felt abandoned and unsupported by health professionals. Participants also reported feeling that health professionals passed the training responsibility to other health professionals who did not give training. This resulted in participants feeling obligated to learn from their peers. Participants lacked knowledge about nutrition, as well as how to prepare home-made formula for feeding, the correct position for feeding and feeding times. Conclusion: Despite having a heavy and vital responsibility, participants felt that they had not been adequately trained and thus faced making errors, resulting in negative consequences for the patient and the family. Therefore, appropriate plans must be made to promote preparation for home care. 

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“If It Needs to be Done, It Needs to be Done”: National Survey of Youth Experiences and Perspectives on Caregiving

Objectives: The purpose of this study was to explore youth experiences and perspectives on family caregiving to improve programs and policies that impact the well-being of youth. Methods: In August 2020, we asked three open-ended questions about current and anticipated caregiving responsibilities, impact, and needs using MyVoice, a national text message poll of youth. Content and thematic analysis was conducted to evaluate qualitative responses. Results: In our sample (n = 1,076), 35% of respondents reported previously or currently providing care for an adult relative either independently or by helping another relative. Participants believed caregiving had or would hinder their educational or career goals and that specific training would better prepare them to be a caregiver. Conclusions: The prevalence of youth caregiving may be higher than previous estimates. Healthcare professionals should evaluate youth for caregiving responsibilities and support them in identifying resources or interventions to reduce potential impacts of caregiving burden on health outcomes. 

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"Together We Stand": A Pilot Study Exploring the Feasibility, Acceptability, and Preliminary Effects of a Family-Based Psychoeducational Intervention for Patients on Hemodialysis and Their Family Caregivers

Objectives: This pilot study aimed to assess the feasibility, acceptability, and preliminary effects of a family-based psychoeducational intervention for patients undergoing hemodialysis (HD) and their family members. Methods: This was a single-group (six dyads), six-week, pre-post pilot study, delivered in a multifamily group format. Feasibility was based on screening, eligibility, content, retention, completion, and intervention adherence rates. Acceptability was assessed at post-intervention through a focus group interview. Self-reported anxiety and depression and patients' inter-dialytic weight gain (IDWG) were also measured. The screening (93.5%), retention (85.7%), and completion (100%) rates were satisfactory, whereas eligibility (22.8%), consent (18.4%), and intervention adherence (range: 16.7-50%) rates were the most critical. Results: Findings showed that participants appreciated the intervention and perceived several educational and emotional benefits. The results from the Wilcoxon Signed-Rank Test showed that a significant decrease in anxiety symptoms (p = 0.025, r = 0.646) was found, which was followed by medium to large within-group effect sizes for changes in depression symptoms (p = 0.261, r = 0.325) and patients' IDWG (p = 0.248, r = 0.472), respectively. Conclusions: Overall, the results indicated that this family-based psychoeducational intervention is likely to be feasible, acceptable, and effective for patients undergoing HD and their family caregivers; nonetheless, further considerations are needed on how to make the intervention more practical and easily implemented in routine dialysis care before proceeding to large-scale trials.

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The ‘work’ of managing medications when someone is seriously ill and dying at home: A longitudinal qualitative case study of patient and family perspectives’

Background: Managing medications can impose difficulties for patients and families which may intensify towards the end of life. Family caregivers are often assumed to be willing and able to support patients with medications, yet little is known about the challenges they experience or how they cope with these. Aim: To explore patient and family caregivers’ views of managing medications when someone is seriously ill and dying at home. Design: A qualitative design underpinned by a social constructionist perspective involving interviews with bereaved family caregivers, patients and current family caregivers. A thematic analysis was undertaken. Setting/participants: Two English counties. Data reported in this paper were generated across two data sets using: (1) Interviews with bereaved family caregivers (n = 21) of patients who had been cared for at home during the last 6 months of life. (2) Interviews (n = 43) included within longitudinal family focused case studies (n = 20) with patients and current family caregivers followed-up over 4 months. Results: The ‘work of managing medications’ was identified as a central theme across the two data sets, with further subthemes of practical, physical, emotional and knowledge-based work. These are discussed by drawing together ideas of illness work, and how the management of medications can substantially add to the burden placed on patients and families. Conclusions: It is essential to consider the limits of what it is reasonable to ask patients and families to do, especially when fatigued, distressed and under pressure. Focus should be on improving support via greater professional understanding of the work needed to manage medications at home.

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Who are the beneficiaries and what are the reasons for non-utilization of care respite and support services? A cross-sectional study on family caregivers

Background: Family caregivers assume substantial caregiving responsibilities for persons with chronic conditions, such as individuals with spinal cord injury, which leads to negative impacts on their lives. Respite care and other services are provided as a temporary relief and support for them. Design of appropriate respite care programs depends on identification of beneficiary subgroups for the different types of service. This study aimed to quantify the uptake of different respite and support services for family caregivers, the reasons for non-use, and to explore the respective predictors. Methods: A cross-sectional survey of family caregivers of persons with spinal cord injury was conducted nationwide in Switzerland. The use of 11 different respite and support services during the previous 12 months was investigated, along with caregivers’ reasons for not using any respite. Classification trees were used to characterize the beneficiaries and reasons for not using respite. Results: About a third of family caregivers used at least one type of respite or support service during the previous 12 months. Utilization of respite care was greater among those who employed professional home care (57% vs 24% of those without professional home care). Marked cantonal differences were also observed in utilization of respite care. The primary reason for not using respite services was “no demand” (80% of non-users of respite services), mainly among caregivers who were less emotionally affected by their caregiving tasks. Conclusions: Utilization of respite and support services depends more on place of residence and use of home care services than on functional status of the care recipient. Accordingly, programs should be tailored to the cultural context of their potential users. This is best achieved through coordination with local health care professionals who can identify needs, provide information, initiate referrals, and integrate the care into a larger support plan.

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A Whirlpool of Stress in Families of Intensive Care Unit Patients: A Qualitative Multicenter Study

Background: Family members of patients admitted to the intensive care unit must tolerate high levels of stress, making them emotionally and physically vulnerable. However, little is known about the kinds of stress family members may experience. Objective: To explore perceived stress in the families of patients admitted to the intensive care unit. Methods: This qualitative content analysis study involved 23 family members of patients admitted to intensive care units. Participants were drawn from family members of patients hospitalized in intensive care units of 3 public and 2 private hospitals. Data were collected through semistructured interviews. Results: Three themes emerged from the data: "distrust," "repeated stress exposure," and "a whirlpool of persistent negative emotional-physical state." The first theme had 2 categories: "fearful mindset" and "negative beliefs about professional caregivers." The second theme also had 2 categories: "fear of the future" and "sustained accumulation of tensions." The third theme had 3 categories: "impaired mental health," "impaired physical health," and "impaired family function." Conclusions: The findings of this study may help critical care nurses better understand the nature and sources of family stresses during a patient's intensive care unit stay. Supervisory nurses should alert their staff to these issues so that family care programs can address them, thereby reducing family members' risk of posttraumatic stress disorder and post–intensive care syndrome-family.

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What do family care-givers want from domiciliary care for relatives living with dementia? A qualitative study

Background: In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. Objectives: This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia living in the community. Methods: Semi-structured qualitative interviews were carried out in England with 14 family care-givers (FCGs) recruited from a single private home care provider. A thematic analysis of the data was undertaken using the constant comparative method. Results: In every instance, it was FCGs who initiated domiciliary care for the person with dementia, highlighting ambiguity about who is the 'client'. Rather than focusing on the HCWs' work in undertaking practical tasks and personal care, respondents prioritised HCWs as companions, providing emotional and social support for their relatives. From an organisational perspective, respondents valued the capacity of the provider to deliver a consistent, personal, reliable and punctual service. These attributes were important in supporting their relative's agency and dignity. Respondents described HCWs engaging in skilled and sensitive communication with clients but considered 'character' and 'innate' caring abilities to be more important than those derived from training. Conclusions: The results highlight the need to acknowledge the family, rather than the individual client, as the functioning unit of care, and to recognise the highly skilled communicative and emotional work undertaken by HCWs.

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Well‐being losses by providing informal care to elderly people: Evidence from 310 caregivers in Shanghai, China

Background: A series of policies aimed toward rational resource allocation of long‐term care have being actively discussed since the launch of the social long‐term care insurance in Shanghai, and it is important to take a societal perspective for informed decision‐making. Objectives: This study aims to explore factors that are associated with well‐being of informal caregivers in Shanghai, and to provide empirical evidence of application of an established well‐being valuation method to monetise informal caregivers' well‐being losses in a developing country. Methods: 310 informal caregivers of applicants for social long‐term care insurance in Shanghai were interviewed. Univariate and multivariate analyses were conducted to explore the associated factors with life satisfaction of the caregivers. The monetary values of an additional hour of caregiving with and without specification of care tasks were estimated by the well‐being valuation method. Results: Life satisfaction was consistently associated with monthly income, health status, and caring hours of the caregivers. The money needed to compensate one additional hour of caring per week was 12.58 CNY (0.3% of the monthly income), and 96.95 CNY (2.0% of the monthly income) for activities of daily living (ADL) tasks. Income, health status, and caregiving are significantly associated with well‐being of informal caregivers. Conclusions: Caregivers in relatively poor health condition and/or involved in more ADL tasks should be particularly considered in supporting policies in Shanghai.

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Well‐being and needs of Malay carers of people with mental illness in Singapore

Background: Despite the importance of carers supporting the lives of people with mental illness, there are limited studies investigating the well‐being and needs of Malay carers in multicultural Singapore. The Malays consist of 13.4% of Singapore's population. Methods: A mixed methods qualitative dominant research approach was used to explore the well‐being and needs of Malay carers in a voluntary welfare organisation. The Kessler‐10, Friendship Scale and Carers' and Users' Expectations of Services—Carer version were used to assess the needs and well‐being of 17 Malay carers. Results: Findings show that Malay carers experienced poor well‐being and had numerous unmet needs. Four main themes were found: (a) Concerns related to relatives with mental illness, (b) Mental health practices related to carers, (c) Holistic support for carers and (d) Preference for greater spiritual support in mental health. Recovery‐oriented mental health practice implications are discussed. Conclusion: Spirituality of Malay carers needs to be given greater consideration in recovery‐oriented mental health services.

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Wearable Devices for Assessing Function in Alzheimer's Disease: A European Public Involvement Activity About the Features and Preferences of Patients and Caregivers

Background: Alzheimer’s Disease (AD) impairs the ability to carry out daily activities, reduces independence and quality of life and increases caregiver burden. Our understanding of functional decline has traditionally relied on reports by family and caregivers, which are subjective and vulnerable to recall bias. The Internet of Things (IoT) and wearable sensor technologies promise to provide objective, affordable and reliable means for monitoring and understanding function. However, human factors for its acceptance are relatively unexplored. Objective The Public Involvement (PI) activity presented in this paper aims to capture the preferences, priorities and concerns of people with AD and their caregivers for using monitoring wearables. Their feedback will drive device selection for clinical research, starting with the study of the RADAR-AD project. Method: The PI activity involved the Patient Advisory Board (PAB) of the RADAR-AD project, comprised of people with dementia across Europe and their caregivers. A set of four devices that optimally represent various combinations of aspects and features from the variety of currently available wearables (e.g. weight, size, comfort, battery life, screen types, water-resistance and metrics) was presented and experienced hands-on. Afterwards, sets of cards were used to rate and rank devices and features and freely discuss preferences. Results: Overall, the PAB was willing to accept and incorporate devices into their daily lives. For the presented devices, the aspects most important to them included comfort, convenience and affordability. For devices in general, the features they prioritized were appearance/style, battery life and water resistance, followed by price, having an emergency button and a screen with metrics. The metrics valuable to them included activity levels and heart rate, followed by respiration rate, sleep quality and distance. Some concerns were the potential complexity, forgetting to charge the device, the potential stigma and data privacy. Conclusions: The PI activity explored the preferences, priorities and concerns of the PAB, a group of people with dementia and caregivers across Europe, regarding devices for monitoring function and decline, after a hands-on experience and explanation. They highlighted some expected aspects, metrics and features (e.g., comfort and convenience), but also some less expected (e.g. screen with metrics).

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“We Have to Be Strong Ourselves”: Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer

Background: Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study. Methods: Twenty-two semi-structured qualitative interviews and one focus group were conducted with carers of Aboriginal and Torres Strait Islander adults with cancer (n = 12) and Aboriginal and Torres Strait Islander cancer survivors (n = 15) from Queensland, Australia. Half of the carers interviewed were Aboriginal or Torres Strait Islander Australians. Interviews were transcribed, coded and thematically analysed following an interpretive phenomenological approach. Findings: Thematic analysis of carer and survivor interviews revealed four key themes relating to carers’ needs: managing multiple responsibilities; maintaining the carer’s own health and wellbeing; accessing practical support and information; and engaging with the health system. Within these overarching themes, multiple needs were identified including specific needs relevant for carers of Aboriginal and Torres Strait Islander peoples, such as advocating for the patient; accessing Indigenous support services and health workers; and ensuring that the cultural needs of the person are recognised and respected. Conclusion: Identifying the needs of informal carers of Aboriginal and Torres Strait Islander cancer patients will enable greater understanding of the support that carers require and inform the development of strategies to meet these areas of need.

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Virtual support group for family caregivers of elderly people with dementia in the COVID- 19 scenery

Introduction: The physical, mental and social status of family caregivers and their care demands have been largely overlooked. This fact has been no different during the COVID-19 pandemic. Therefore, home care will need updates for this new pandemic context, prioritizing the provision of personalized guidance for family caregivers. Objective: To minimize the impact on the mental health of family caregivers of people with dementia through the virtual support group for family caregivers. Method: The research was developed from the performance of support groups for family caregivers in dementia in the virtual format. The meetings were weekly, lasting 2 hours and the themes were worked out according to the group's demands. All meetings were recorded, transcribed, and analyzed using thematic content analysis. Results: In the 8 meetings, 10 family caregivers participated and 5 thematic categories were identified: technology; the routine in the COVID-19 pandemic; behavioral changes and their relationship with the caregiver's mental health; the support network as a health marker; and the new way of carrying out meaningful activities. Conclusion: The support group in the virtual format proved to be a powerful tool for accessing information and guidance concerning dementia, about family care and actions aimed at the caregiver's self-care, with an impact on their emotional state and well-being, minimizing the feeling of social isolation during the COVID-19 pandemic.

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Video decision support tool promoting values conversations in advanced care planning in cancer: protocol of a randomised controlled trial

Background: Views on advance care planning (ACP) has shifted from a focus solely on treatment decisions at the end-of-life and medically orientated advanced directives to encouraging conversations on personal values and life goals, patient-caregiver communication and decision making, and family preparation. This study will evaluate the potential utility of a video decision support tool (VDST) that models values-based ACP discussions between cancer patients and their nominated caregivers to enable patients and families to achieve shared-decisions when completing ACP’s. Methods: This open-label, parallel-arm, phase II randomised control trial will recruit cancer patient-caregiver dyads across a large health network. Previously used written vignettes will be converted to video vignettes using the recommended methodology. Participants will be ≥18 years and be able to complete questionnaires. Dyads will be randomised in a 1:1 ratio to a usual care (UC) or VDST group. The VDST group will watch a video of several patient-caregiver dyads communicating personal values across different cancer trajectory stages and will receive verbal and written ACP information. The UC group will receive verbal and written ACP information. Patient and caregiver data will be collected individually via an anonymous questionnaire developed for the study, pre and post the UC and VDST intervention. Our primary outcome will be ACP completion rates. Secondarily, we will compare patient-caregiver (i) attitudes towards ACP, (ii) congruence in communication, and (iii) preparation for decision-making. Conclusion: We need to continue to explore innovative ways to engage cancer patients in ACP. This study will be the first VDST study to attempt to integrate values-based conversations into an ACP intervention. This pilot study’s findings will assist with further refinement of the VDST and planning for a future multisite study. Trial registration Australian New Zealand Clinical Trials Registry No: ACTRN12620001035910. Registered 12 October 2020. Retrospectively registered.

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Valuing the caregiver: a feasibility study of an acceptance and commitment therapy (ACT) group intervention for dementia caregivers

Purpose: This study aims to investigate the feasibility and acceptability of a new group intervention, using an acceptance and commitment therapy (ACT) approach, developed for dementia caregivers. Preliminary data regarding the effectiveness of the intervention was also collected. Design/methodology/approach: A quasi-experimental design is used involving pre- and post-intervention data from four different intervention sites, along with three-month follow-up data. Data on attendance, attrition and qualitative feedback was also collected as an indication of acceptability. A total of 23 people currently caring for a family member with dementia attended the ACT group intervention for five sessions. Detailed evaluation forms were collected at the end of each group, along with four self-report questionnaires: Zarit Burden Interview, Positive Aspects of Caregiving Scale, Dementia Management Strategies Scale and Experiential Avoidance in Caregiving Questionnaire. Findings: Findings indicate that the group intervention was feasible and acceptable to caregivers, with subjective change reported in understanding of behavioural changes in the care-recipient, ability to handle negative emotions and valued living. These changes were not reflected in the outcome measures, with only one change reaching statistical significance (reduction in “intolerance of negative thoughts and emotions towards the relative”). Suggestions are made regarding possible alternative outcome measures for future studies to capture participants’ experience more fully, along with potential adaptations and future directions for the intervention. Originality/value: This study provides preliminary evidence of the acceptability and feasibility of a group therapeutic intervention based on ACT for informal caregivers of dementia.

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A Validation Study of the Revised Caregiving Burden Instrument in Korean Family Caregivers of Stroke Survivors

Background: The purpose of the present study was to examine the internal consistency reliability and construct validity of the Caregiving Burden Instrument in Korean informal caregivers of stroke survivors. Methods: A descriptive survey design was used with a convenience sample of 208 primary caregivers of stroke survivors. Internal consistency reliability was assessed using Cronbach’s alpha coefficients. Construct validity was assessed using exploratory and known-group analysis. Results: Each subscale and the total scale demonstrated satisfactory internal consistency reliability. Exploratory factor analysis identified five factors: family support, patient’s dependency, physical health, financial burden, and psychological health, which together accounted for 62.7% of the variance. Known-group analysis indicated that caregivers with more than one year of experience reported significantly higher mean scores for the total burden score and its five subscales compared to those with less than one year. Conclusions: This 23-item instrument demonstrates good internal consistency reliability and construct validity. The tool can be used to effectively assess burden in caregivers of stroke survivors and the data obtained can form the basis for the development of family interventions.

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Validating the Chinese version of the Cancer Survivors' Partners Unmet Needs measure (C‐CaSPUN) and exploring unmet needs in Chinese cancer survivor–family caregiver dyads

Objectives: To evaluate the psychometric properties of the C‐CaSPUN in Chinese family caregivers (FCs) of cancer survivors (CaS) and to compare the unmet needs of CaS‐FC dyads. Methods: A questionnaire survey, consisting of five Chinese version measurement scales, was used to collect data from CaS‐FC dyads. Statistical methods used included exploratory factor analysis (EFA), confirmatory factor analysis (CFA), Cronbach's α, intraclass correlation coefficient (ICC) and Pearson's correlation. Results: Participants consisted of 610 survivor–caregiver dyads. EFA and CFA established the four‐factor construct C‐CaSPUN, comprising relationship impact and life perspective, information and health care, quality of life (QoL) and survivorship care. All of the C‐CaSPUN scales had good internal reliability (Cronbach's α ≥ 0.752). The ICC for test–retest ranged from 0.645 to 0.782 at the scale level, with an average ICC value of 0.653. The concurrent validity was evidenced by C‐CaSPUN being negatively associated with SF‐12 MCS and positively related to anxiety and/or depression. In addition, the correlation coefficient scores between C‐CaSPUN factors and the C‐CaSUN total scale ranged from moderate to good (r = 0.505–0.671). Conclusions: Study findings may support the reliability and validity of the C‐CaSPUN in measuring the unmet needs of FCs of Chinese CaS.

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Untangling the inter-relatedness within integrated care programmes for community-dwelling frail older people: a rapid realist review

Objective: To identify the relationships between the context in which integrated care programmes (ICPs) for community-dwelling frail older people are applied, the mechanisms by which the programmes do (not) work and the outcomes resulting from this interaction by establishing a programme theory. Design: Rapid realist review. Inclusion criteria: Reviews and meta-analyses (January 2013–January 2019) and non-peer-reviewed literature (January 2013–December 2019) reporting on integrated care for community-dwelling frail older people (≥60 years). Analysis: Selection and appraisal of documents was based on relevance and rigour according to the Realist And Meta-narrative Evidence Syntheses: Evolving Standards criteria. Data on context, mechanisms, programme activities and outcomes were extracted. Factors were categorised into the five strategies of the WHO framework of integrated people-centred health services (IPCHS). Results: 27 papers were included. The following programme theory was developed: it is essential to establish multidisciplinary teams of competent healthcare providers (HCPs) providing person-centred care, closely working together and communicating effectively with other stakeholders. Older people and informal caregivers should be involved in the care process. Financial support, efficient use of information technology and organisational alignment are also essential. ICPs demonstrate positive effects on the functionality of older people, satisfaction of older people, informal caregivers and HCPs, and a delayed placement in a nursing home. Heterogeneous effects were found for hospital-related outcomes, quality of life, healthcare costs and use of healthcare services. The two most prevalent WHO-IPCHS strategies as part of ICPs are ‘creating an enabling environment’, followed by ‘strengthening governance and accountability’. Conclusion: Currently, most ICPs do not address all WHO-IPCHS strategies. In order to optimise ICPs for frail older people the interaction between context items, mechanisms, programme activities and the outcomes should be taken into account from different perspectives (system, organisation, service delivery, HCP and patient).

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The unmet needs of carers of patients diagnosed with sarcoma: A qualitative study

Background: Sarcoma is a rare cancer that may result in reduced mobility, social isolation, poorer mental health, and ongoing medical issues for patients. Family carers play a crucial role in supporting patients throughout their sarcoma journey. Despite the aggressive and debilitating nature of the disease, the unmet needs of these carers are yet to be explored. Objectives: The aim of this study was to explore the unmet needs of carers of patients diagnosed with sarcoma. Methods: An exploratory qualitative research design with a social constructionist epistemology was used. Participants were carers of patients diagnosed with a sarcoma (n = 33). Semi‐structured interviews were conducted with carers of patients who completed treatment for sarcoma and also bereaved carers (BC). Interviews were transcribed verbatim and analysed using thematic analysis. Findings: Four overarching themes were identified: support with medical aspects of caregiving, support for self, needing information about the patient, and financial support. Participants recognised that they needed psychosocial support, however, many were reluctant to access support as they perceived this to be prioritising their own needs instead of the patients'. They also needed more information about the patients' disease and how to navigate the health system. Conclusions: Family carers for patients with sarcoma have onerous responsibilities that affect their ability to access care for themselves and their family. Providing more holistic patient care and carer‐specific information and training could reduce carer burden. Establishing support groups specific to carers and BC of patients diagnosed with sarcoma could provide opportunities for social interaction and psychosocial support.

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Why We Are Failing Family Caregivers

In the article, the author discusses the challenges facing family caregivers in the U.S. and the alleged failure by the government to support their needs by citing her experiences in caring for her parents, who both suffered from cancer. Other topics include the lack of information on the various support groups, programs and services offered to vulnerable elders and their caregivers by the government and nonprofit organizations.

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Understanding the support needs of family members of people undergoing chemotherapy: A longitudinal qualitative study

Objectives: Capture change in family members' experiences as they look after patients during chemotherapy, and understand variability in their needs for support. Methods: Longitudinal digitally-recorded qualitative semi-structured interviews with family carers at the beginning, mid-point, and end of treatment. Twenty-five family members (17 women, 8 men), mean age 53, were interviewed. Fifteen participants were supporting a relative having chemotherapy with curative intent, and 10 a patient receiving palliative chemotherapy. They were recruited from two UK locations: a regional cancer centre in Southampton and a comprehensive cancer centre in London. Sixty-three interviews were conducted in total, and the data were analysed using Framework Analysis. Findings: Three themes were generated from the data: Changing lives, Changing roles ; Confidence in caring , and Managing uncertainty. These captured family carers' evolving needs and sense of confidence in caregiving during chemotherapy. Carers reported considerable anxiety at the outset of treatment which persisted throughout. Anxiety was underpinned by fears of disease recurrence or progression and concerns about treatment outcomes. Conclusions: This study presents original fine-grained work that captures the changes over time in family carers' experiences of chemotherapy and their adaptation to caregiving. It provides fundamental evidence of the challenges that cancer carers face during patients' treatment; evidence that can be used as a basis for carer assessment and to build much-needed carer interventions. Oncology nurses should assess carers': ability to care; needs for information and support to prepare them for this; wellbeing over time; and, any support they may require to prevent them from becoming overburdened. 

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Understanding the client and family experience of neuropsychological evaluation

Background: Neuropsychological evaluation serves a number of health-related purposes, but little is known about how the evaluation process is experienced by clients and their family members. In this article, we describe a quality improvement initiative that utilized a mixed-methods approach to explore personal goal attainment and satisfaction by clients and family members engaging in the evaluation process. Methods: We retrospectively reviewed data collected over a 5-year period from a neuropsychological evaluation service at a tertiary geriatric care center. At the outset of the evaluation, 492 clients and family members identified goals to better understand the client's cognition and to obtain recommendations for managing cognitive changes; the large majority of these goals were rated as achieved by the end of the feedback session. Results: At service completion, 657 clients and family members completed satisfaction questionnaires, and over 90% of respondents endorsed the highest level of satisfaction. Qualitative content analysis identified clinician behaviors, quality of care, and environmental factors as important aspects of the client and family experience. Findings were used to improve the delivery of client-centered, evidence-based care. Conclusion: The results of this initiative demonstrate the feasibility and utility of incorporating client and family goals and feedback into routine clinical practice. Practical suggestions and relevant tools are provided to assist the professional psychologist in implementing quality improvement processes in their own practices.

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VidaTalk™ patient communication application "opened up" communication between nonvocal ICU patients and their family

Background: To explore family members' perceptions of an electronic communication application, VidaTalk™, their communication experience, and emotional reactions to communication with mechanically ventilated patients in the intensive care units. Methods: Qualitative phase of a mixed-methods study nested within a randomised controlled trial. Family members in the intervention group received the VidaTalk™ app as a communication aid during their intensive care stay. Seven family members participated in 18 semi-structured email interviews after discharge between May and December 2018. Interviews were analysed using qualitative content analysis. Families were recruited in multiple intensive care units located in one university hospital. Communication experience with the VidaTalk™ and emotions while communicating with the patient. Basic qualitative description and constant comparative techniques were used to code and analyse the text using ATLAS_ti (Version 7.5.18). Findings: The VidaTalk™ opened up family-patient communication by allowing clear communication and expanding communication content. Family members felt happy and thankful to communicate with the patient. They also expressed feelings of relief and less frustration and less stress while communicating with the patient.​ On the other hand, the patient's ability to express their worries or anxiety sometimes made families feel sad or distressed. The VidaTalk™ was helpful for family-patient communication. Conclusions: The VidaTalk™ may help families reduce psychological distress. However, ​expanded communication with critically ill patients may cause other negative feelings.

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Use of telehealth platforms for delivering supportive care to adults with primary brain tumors and their family caregivers: A systematic review

Objective: Telehealth platforms have potential utility for providing remote access to supportive care to people with brain tumour. This systematic review aimed to evaluate the feasibility, acceptability and efficacy of delivering supportive care via telehealth platforms to adults with primary brain tumour and family caregivers. Methods: A systematic search of PsycINFO, MEDLINE, CINAHL, Embase, Scopus and Cochrane Library was conducted from 1980 to 1st June 2020 to identify eligible studies. Methodological quality was assessed by two independent reviewers. Results: Seventeen articles, reporting on 16 studies, evaluated telephone‐based support (5 studies), videoconferencing (3 studies), web‐based programs and resources (7 studies) or combined use of videoconferencing and web‐based modules (1 study) to deliver supportive care remotely. Caregivers were involved in 31% of interventions. Mean rates of accrual (68%) and adherence (74%) were moderate, whereas acceptability or satisfaction for those completing the interventions was typically high (M satisfied or very satisfied = 81%). Adherence rates were generally higher and clinical gains were more evident for interventions involving real‐time interaction as opposed to self‐guided interventions. Conclusions: Telehealth delivery of supportive care is feasible and acceptable to a high proportion of individuals with primary brain tumour and their caregivers. It is recommended that future research focuses on implementation outcomes, including factors influencing the uptake and sustainability of telehealth platforms in practice.

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Work, Leisure Time Activities, and Mental Health among Family Caregivers of the Elder People in Japan

Background: In Japan, there is a high incidence of family members caring for their elderly. To facilitate this, caregivers often quit their jobs, work reduced hours, and forfeit leisure activities. Objectives: This study examined the relationship between the mental health of the caregivers and the sacrifices and adjustments they make to care for the elderly. Methods: A cross-sectional survey was conducted with responses from 171 caregivers. Referencing Pearlin’s stress process model, the relationship among five types of work change, four types of leisure activity quitting, caregivers’ subjective care burden, and depression were analyzed using t-test and multiple regression analysis. Methods: Caregivers who quit their work or other home activities had significantly more daily living care responsibilities than those who did not. Moreover, caregivers who gave up leisure activities had a greater sense of subjective care burden than those who did not. The experience of giving up peer activities and taking leave of absence from work was significantly associated with increased depressive symptoms. Being a part-timer or financially prosperous was associated with good mental health. Conclusions: To support family caregivers, it is essential to reduce the burden of long-term care and provide financial help and an environment where they interact with their peers, and their moods can be enhanced.

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Young carers and ALS/MND: exploratory data from families in South Africa

Background: Amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) remains under-resourced across much of the world, including the global south. The lack of supports for ALS/MND is underscored, given the barriers to care, stigma associated, and need for intensive, 24-hour care, primarily provided by family, including vulnerable children and youth, 'young carers'. With little information of the care experience in ALS/MND in South Africa, this study sought to explore family characteristics and identify caregiving experiences and need of young carers in families living with ALS/MND. Methods: Using an exploratory mixed-methods approach, participants (N = 40) from 20 familes, were recruited from the two ALS/MND clinics in Cape Town and Johannesburg areas. Separate audiotaped interviews with adults living with ALS, adult caregivers and young carers were conducted. Findings: Young carers, both genders, ages 9–19, provided care up to 50 or more hours per week, including administering medications, toileting, and feeding the person with ALS/MND, with the majority reporting no training. Stigma, fear and lack of knowledge about ALS/MND limited how families discussed both ALS/MND and care provided by young carers. Families highlighted transportation barriers, and inconsistent access to care across regions. Parents identified emotional support, and in-home help to alleviate the burden of care on youth, acknowledging reliance on young carers due to cost of care. Young carers identified the need for education and people their age to talk to about ALS/MND. Conclusions: Results highlight the complex needs and interaction among families living with ALS/MND in South Africa. Data support the development of targeted support and education programs to address the need for culturally relevant interventions for families and their young carers living with ALS/MND. 

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Using a Mechanical Lift at Home

The article is part of a series, which supporting Family Caregivers, and published in collaboration with the AARP Public Policy Institute. Topics discussed include results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers; and this series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home.

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A typology of caregiving spouses of geriatric patients without dementia: caring, worried, desperate

Background: An increasing number of older people in Germany receive care at home from family members, particularly from spouses. Family care has been associated not only with subjective burden but also with negative effects on caregivers’ health. A heterogeneous group, caregivers are confronted with individual situational demands and use different available coping strategies. To date, little is known about the relationship between burden and coping by spousal caregivers, particularly in the context of geriatric patients without dementia. Objectives: The aim of this study is to explore the burden and coping strategies of caregiving spouses of geriatric patients without dementia and with a hospitalization within the last year. To help explore this population, a typology is presented that has been based on reported perceptions of home care burden and individual coping strategies. Furthermore, a case study is presented for each type of spousal caregiver. Methods: The study used a concurrent mixed method design with a sample of nine spousal caregivers (mean age: 78.9 years). Four women and five men were recruited in an acute hospital setting during the TIGER study. Quantitative data were collected using a self-questionnaire and qualitative data were gathered through nine problem-centered interviews with spousal caregivers. The latter were subsequently analyzed utilizing the structured content analysis method. The data were then summarized to nine individual cases. Finally, the results were clustered using the empirically grounded construction of types and typologies. Each type of spousal caregiver is presented by a case study. Results: Three types of caregiving spouses were identified: “The Caring Partner”, “The Worried Manager” and “The Desperate Overburdened”. These types differ primarily in the level of subjective burden and caregiving stress, the coping strategies, the motivation for caregiving, and expressed emotions. Conclusions: The development of this new typology of caregiving spouses could help health care professionals better understand caregiving arrangements and thus provide more targeted advice. Trial registration The TIGER study was registered with clinicaltrials.gov: NCT03513159. Registered on April 17, 2018.

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Young adults suffering from mental illness: Evaluation of the family‐centred support conversation intervention from the perspective of mental healthcare professionals

Aims and objectives: To explore how mental healthcare professionals' experience and evaluate the use of Family‐Centred Support Conversation Intervention. Background: Mental health professionals working in the community mental health service provide treatment, care and support to young adults suffering from mental illness. Young adults suffering from mental illness are dependent on other family members and live close to the family. The Family‐Centred Support Conversation promotes healing and alleviates the suffering of the family. Design and methods: A qualitative explorative design was used. Individual interviews with health professionals (n = 13) were conducted in Norway and analysed using a phenomenographic approach. The COREQ checklist was used. Results: Three descriptive categories emerged: A new tool in the toolbox, the family as a conversational partner and Implementing the intervention, with seven conceptions. The mental health professionals had no previous routine for family support. The conversations helped them to structure the involvement of family members. Having the family as a conversational partner together with the patients was considered both somewhat new and rewarding but also challenging. The mental health professionals described a need to adjust the intervention. Conclusions: The Family‐Centred Support Conversation was described as a complement to care, as usual, structuring the involvement of families. The knowledge exchange between the families and the mental health professionals may create a context of changing beliefs, strengths and resources. Relevance to clinical practice: Clinical practice is challenged to work on establishing a mindset; whereby, the family is regarded as a resource with important skills and life experience. The family should be offered individualised support and follow‐up, and FCSC may be a relevant intervention.

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Why Is It Just So Hard? Making Sense of End-of-Life Communication Between Adult Children and Their Terminally Ill Parental Figures

Background: The aging population in the United States is predicted to become one fifth of the population by 2050. With that increase, more individuals in the country will be experiencing chronic health conditions and the need for care, with end of life (EoL) becoming more of a topic that needs to be discussed. Objectives & Methods: This study aims to explore the ways adult children talk to their parents about EoL, death, and dying. Findings: We discovered six themes: protection, meeting needs, guilt and regret, control, family dynamics, and communication type. Each of these was prevalent in responses to how adult children cope, how they cared for their parent, and how hope played into the interactions. Conclusions: We believe these themes will be helpful in developing a quantitative scale to study EoL further and be practical in helping adult children cope following death of their parent.

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Trends of concerns from diagnosis in patients with advanced lung cancer and their family caregivers: A 2-year longitudinal study

Background: Both advanced cancer patients and their family caregivers experience distress and have a range of concerns after cancer diagnosis. However, longitudinal studies on this topic have been lacking. Aim: To investigate concerns in both patients with advanced lung cancer and their family caregivers longitudinally from diagnosis. Design: A multi-center prospective questionnaire-based study. Setting/participants: We recruited patients with newly diagnosed advanced lung cancer and their family caregivers at 16 hospitals in Japan. We prospectively assessed the prevalence of their concerns using the Concerns Checklist and investigated the associations between their concerns and mental status as well as quality of life until 24 months after diagnosis. Results: A total of 248 patients and their 232 family caregivers were enrolled. The prevalence of serious concerns was highest at diagnosis (patients: 68.3%, family caregivers: 65.3%). The most common serious concern was concern about the future in both groups at diagnosis (38.2% and 40.5%, respectively) and this remained high in prevalence over time, while the high prevalence of concern about lack of information improved 3 months after diagnosis in both groups. Approximately one-third of patient-family caregiver dyads had discrepant reports of serious concerns. The presence of serious concerns was significantly associated with anxiety and depression continuously in both groups. Conclusions: The majority of advanced lung cancer patients and their family caregivers have serious concerns from diagnosis, which is associated with their psychological distress. The spectrum of concerns alters over the disease trajectory, warranting efficient tailored care and support for both groups immediately after diagnosis.

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Traumatised, angry, abandoned but some empowered: a national survey of experiences of family caregivers bereaved by motor neurone disease

Background: There are few illnesses as disruptive as motor neurone disease, a fatal neurodegenerative condition, where diagnosis introduces a clinical narrative of inevitable decline through progressive immobilisation into death. Recent evidence suggests that bereaved motor neurone disease family caregivers are more likely to be at moderate or high risk of complicated grief. Methods: Qualitative data from an anonymous national survey of bereaved motor neurone disease caregivers (n = 393) was examined through thematic analysis to explore the experiences of people who are at low, moderate, and high risk of complicated grief. Up to 40% responded to three open-ended questions: How caregivers viewed their coping strategies; the advice they had for others and what had been positive about their experience. Results: Ten themes informed the narratives of illness and loss. All three groups shared similar experiences but differed in their capacity to address them. The low-risk group seemed to recognise the uncertainty of life and that meaning needed to be created by them. For the moderate-risk group, while motor neurone disease was a major disruption, they could with support, regroup and plan in different ways. The high-risk group did not have many resources, external or internal. They felt let down when professionals did not have answers and could not see or did not know how to change their ways of responding to this unwanted situation. Conclusion: The differences in these three profiles and their narratives of loss should alert health and community service providers to identify and address the caregivers’ support needs early and throughout the caregiving journey. Motor Neurone Disease Associations are involved throughout the illness journey and need to invest in a continuum of care incorporating end-of-life care and bereavement support. Community grief literacy and enhancement of social networks are keys to improved support from families and friends that can enable the focus to be on feelings of empowerment rather than abandonment. 

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Transitions during end-of-life care from the perspective of informal caregivers – A concept analysis using Rodgers' (2000) evolutionary approach

Background: To produce a conceptual and operational definition of transition, in the context of end-of-life care, as experienced by informal caregivers. Methods: The authors used Rodgers' (2000) concept analysis framework to examine this concept. Findings: Common themes emerged using Rodgers' (2000) inductive approach confirming transition for informal caregivers at the end of life as a process comprising the presence of trigger(s)/event(s), awareness, instability and engagement/learning while maintaining normality. There was also duration to this process that was often unknown and unpredictable. This concept analysis provides useful insight into understanding the complex dynamics of transition during this period. The primary antecedent of this concept, prompting transition, is a diagnosis of non-curative disease for the patient. In some cases, a gradual realisation rather than a formal diagnosis that the illness has progressed to a non-curative stage, can also be an antecedent. Transition during end-of-life-care for informal caregivers can be a highly emotional time for this vulnerable cohort. Effective transitioning can ensure a stability and quality end-of-life outcomes, such as a peaceful death, as the awareness and learning that it brings, prompts planning actions for terminal care. Conclusions: Through recognising the findings of this concept analysis, deeper insight may be gained to support the provision of care, by nurses, to informal caregivers, prompting them towards effective transitions that foster the best interest of the patient.

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Transitioning to Long-Term Care: Family Caregiver Experiences of Dementia, Communities, and Counseling

Objectives: Previous analyses of interventions targeting relationships between family caregivers of people with Alzheimer's disease and related dementias and residential long-term care (RLTC) staff showed modest associations with caregiver outcomes. This analysis aimed to better understand interpersonal and contextual factors that influence caregiver–staff relationships and identify targets for future interventions to improve these relationships. Methods: Using a parallel convergent mixed methods approach to analyze data from an ongoing counseling intervention trial, descriptive statistics characterized the sample of 85 caregivers and thematic analyses explored their experiences over 4 months. Results: The findings illustrated that communication, perceptions of care, and relationships with staff are valued by family caregivers following the transition of a relative with dementia to RLTC. Discussion: The findings deepen understanding of potential intervention targets and mechanisms. These results can inform future psychosocial and psychoeducational approaches that assist, validate, and empower family caregivers during the transition to RLTC.

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Trajectories of Informal Caregiving to the Oldest-old: A One-year Follow-up Study

Objectives: This study aimed to analyze caregivers and care recipients’ health characteristics and caregiving context changes during a one-year follow-up. Methods: A total of 204 informal caregivers and oldest-old care recipients ( ≥ 80 years) were assessed on two occasions, 12 months apart. Information was retrieved on the dyad’s sociodemographic profile, caregiver’s health/caregiving outcomes, care recipients’ dependency level, and caregiving context. Descriptive analysis was performed for all variables and comparisons between the two moments using paired t tests or McNemar tests. Results: Caregiving hours, caregiver burden, and negative aspects of caregiving got significantly worse over one year. The number of unmet needs, in-home services utilization, and self-perception of mental health improved. Care recipients declined in their functional and health status and on their cognitive performance. Conclusions: This study provides information about caregiving trajectory changes over one year and stresses a probable caregiver adaptation even when facing increasing caregiving demands.

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Training Professionals to Facilitate Future Planning for Aging Caregivers: Exploratory Results From a Multistate Intervention

Background: Planning for the future is important for individuals with intellectual and/or developmental disabilities (I/DD) and their families. When caregivers are no longer able to provide support, individuals with I/DD may experience loss of services or benefits, residential or employment‐related disruption, or other adverse consequences. Up until now, most future planning related interventions and approaches have been focused on directly supporting families and individuals with I/DD. Methods: We present findings from a training intervention designed for professionals who work with individuals with I/DD and their families, suggesting that future planning be included in service provision and community outreach. Results: Training participants increased their confidence in helping families plan and their likelihood to take action after participating in a 1‐day training. Conclusions: We discuss the implications of developing disability professionals as allies and resources to families as they engage in future planning activities. 

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Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress

Objectives: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability. Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child's therapy. Findings: The proposed definition of therapy-related parental stress is "the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)". A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives. This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research. It is imperative to recognise paramedical therapies (i.e., physical, occupational, and speech and language therapy) as a potential stressor for parents of children with a physical disability, both in paediatric rehabilitation practice and research. Conclusions: A definition and theoretical model of therapy-related parental stress is proposed and the need for measures to evaluate this phenomenon is argued. The authors provide a starting point for the evidence base of the concept of therapy-related parental stress.

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Therapeutic Interventions with Families of Breast Cancer Survivors

A breast cancer diagnosis presents daunting challenges and disruptions to everyday life for family members and caregivers of breast cancer survivors (BCS). Particularly critical to families are their coping mechanisms, patterns of resiliency, and resource availability to navigate such a transformational experience. Family therapy and family therapists can introduce vulnerable families to a variety of clinical interventions that can be helpful in reducing the distress engendered by a breast cancer diagnosis. This manuscript describes clinical dynamics, considerations, and interventions that can be utilized with families of breast cancer survivors. Implications for practice, limitations, and ideas for future research are discussed.

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The Tele‐STELLA protocol: Telehealth‐based support for families living with later‐stage Alzheimer's disease

Aims: We aim to establish the feasibility and acceptability of the Tele‐STELLA (Support via Telehealth: Living and Learning with Advancing Alzheimer's Disease and Related Dementias) intervention. We will also assess the efficacy of the intervention in reducing the frequency of behavioural symptoms of dementia as well as family Care Partner reactivity to the symptoms. Design: This is a multi‐component, quasi‐experimental study that focuses on facilitating effective management of behavioural symptoms that occur in the later stages of dementia. Methods: Family Care Partners (n = 124) for persons with Alzheimer's disease will participate in two 8‐week videoconferencing components that address behavioural symptoms—in both the persons with Alzheimer's disease and their Care Partners. In the first component ('Nova'), Care Partners work with one nurse for an hour/week for 4 weeks, then they join a small group for another 4 weeks. In the second component ('Constellation'), Care Partners work in a larger group to hone skills and knit supportive relationships. Behavioural symptom frequency and Care Partner reactivity to the behaviours will be measured prior to, during and after the intervention. The study is funded by the United States National Institute on Aging (R01AG067546); funding was initiated as on February, 2021. Discussion: Tele‐STELLA fills a gap in current videoconference‐based psychoeducational interventions in that it offers real‐time interaction with nurses and peers. The intervention was designed with feedback by pilot participants. This study will assess Tele‐STELLA in its current, novel format; thus, preparing it for a larger, future randomized controlled trial. Impact: Tele‐STELLA addresses symptoms that occur in the later stages of dementia, providing families with tools to facilitate effective behavioural management. Because Tele‐STELLA is implemented via videoconferencing, it targets Care Partners who face barriers to support, such as cost and transportation. Trial Registration: This trial is registered with ClinicalTrials.gov (#NCT04627662).

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A Technology-Enabled Adaptation of Face-to-Face Caregiver-Mediated JASPER Intervention: Preliminary Examination of Video Conferenced Caregiver Coaching: AJMR

Background: Family-centered practices that involve direct participation of caregivers as part of intervention is critical to effective early intervention. However, regularly scheduled, in person service delivery is not always possible in remote communities, prompting a need for adaptations to the delivery of services, such as the use of live video conferencing to coach caregivers in strategies to promote their children's development. Methods: In this study, caregivers and their children ages 2–9 with autism who were living in rural and remote Canadian communities were included. A concurrent multiple baseline design across participants was applied to examine the effects of live video conference caregiver coaching on children's time jointly engaged with caregivers and caregivers' intervention strategy implementation. Results: Results indicated that all children demonstrated greater time jointly engaged and caregivers demonstrated greater use of strategies in comparison to baseline. Conclusions: The results of this study offer preliminary evidence of the effectiveness of real time video conference coaching for caregivers engaging their children with ASD in play.

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Technology intervention to support caregiving for Alzheimer’s disease (I-CARE): study protocol for a randomized controlled pilot trial

Background: Informal caregivers of patients with Alzheimer’s disease and related dementias (ADRD) manage a complex spectrum of patient behavioral and psychological symptoms of dementia (BPSD). Mobile health information technologies have quickly become sources for modern social support and chronic disease management. These technologies can improve our understanding of how to care for patients with ADRD and their informal caregivers. A mobile telehealth intervention could help reduce caregiver burden and BPSD. Methods: This is a pilot randomized controlled trial of 60 dyads of patients living with ADRD and their caregivers, to test the feasibility and estimate the potential effect of the Brain CareNotes (BCN) mobile telehealth system. Participants will be recruited from two health systems. Participants will be randomly assigned to either the BCN intervention arm or usual care comparator. Data will be collected at baseline, 3- and 6-month follow-up. The primary objectives of this trial are to assess feasibility outcomes: (a) recruitment rate, (b) data completion, (c) BCN usability, (d) BCN acceptance, and (e) BCN use and assessed either on an ongoing basis or at 3- and 6-month post-intervention. A secondary objective was to estimate the intervention’s effects on caregiver burden and patient BPSD outcomes at 3 and 6 months, assessed by the Neuropsychiatric Inventory. Discussion: The study will assess the intervention feasibility and potential effect size of the BCN telehealth system as a potentially scalable and lower-cost solution for addressing the ADRD public health crisis. Trial registration Clinical Trials. NCT03119259. Registered on April 18, 2017.

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Technological Solutions and Informal Care Culture for the Elderly: An Intervention Proposal for Training Actions

Objectives: This article proposes an intervention from the field of social sciences to improve the knowledge of informal caregivers about care for the elderly. Methods: We analyze the social and cultural relationships that support the informal care culture in Spain. Some of the most important factors that are an obstacle to the professionalization of the sector are presented. Findings: The profiles of the informal caregivers are established, highlighting that most of them are women, whether they are family members or not. Furthermore, we find a prominent role of immigrant women in the non-professional care sector. We also analyzed the different relationships that groups related to informal care of the elderly have with technologies, highlighting mobile phones and instant messaging applications. Conclusions: With this result, we proposed the public policies of care for the elderly to contemplate training actions transmitted through the mobile phone and messaging applications.

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Systematic review of illness uncertainty management interventions for cancer patients and their family caregivers

Purpose: Illness uncertainty pervades individuals' experiences of cancer across the illness trajectory and is associated with poor psychological adjustment. This review systematically examined the characteristics and outcomes of interventions promoting illness uncertainty management among cancer patients and/or their family caregivers. Methods: PubMed, Scopus, PsycINFO, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, and Cochrane Database of Systematic Reviews were systematically searched for relevant literature. We included randomized controlled trials (RCTs) and quasi-experimental studies focusing on interventions for uncertainty management in cancer patients and/or their family caregivers. Results: Our database searches yielded 26 studies. Twenty interventions were only offered to cancer patients, who were mostly elder, female, and White. All interventions included informational support. Other intervention components included emotional support, appraisal support, and instrumental support. Most interventions were delivered in person and via telephone (n = 8) or exclusively in person (n = 7). Overall, 18 studies identified positive intervention effects on illness uncertainty outcomes. Conclusion: This systematic review foregrounds the promising potential of several interventions—and especially multi-component interventions—to promote uncertainty management among cancer patients and their family caregivers. To further improve these interventions' effectiveness and expand their potential impact, future uncertainty management interventions should be tested among more diverse populations using rigorous methodologies.

 

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A Systematic Review of Clinical Interventions Facilitating End-of-Life Communication Between Patients and Family Caregivers

Background: Communication between patients and family caregivers plays a key role in successful end-of-life (EOL) care. In the majority of cases, health-care providers (HCP) are responsible for leading this communication in clinical settings. Objectives: This systematic review aimed to examine the evidence for the efficacy of HCP-led interventions in enhancing communication between patients and family caregivers. Methods: The review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and involved a search of MEDLINE via PubMed, CINAHL, Scopus, Embase, and PsycINFO as well as a manual search for additional articles on Google Scholar without date restrictions. Of 2955 articles retrieved, 8 meeting the eligibility criteria were included in the review. A quality appraisal of the selected studies was performed using the van Tulder Scale, with 5 of 8 studies rated as high quality. Results: All 8 studies employed psychoeducational interventions involving both patients and surrogate/family caregivers. Common elements of the interventions reviewed included encouraging participant dyads to share their concerns about the patient's medical condition, clarify their goals and values for EOL care, and discuss their EOL care preferences. Of 8 interventions reviewed, 6 measured EOL care preference congruence within dyads as a primary outcome, and all 6 interventions were effective in increasing congruence. Secondary outcomes measured included decisional conflict and relationship quality, with mixed outcomes reported. Conclusions: This review suggests that HCP-led EOL communication interventions show promise for improving EOL care preference congruence. However, further studies with improved methodological rigor are needed to establish the optimal timing, intensity, and duration of interventions.

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SYMPERHEART: an intervention to support symptom perception in persons with heart failure and their informal caregiver: a feasibility quasi-experimental study protocol

Introduction: Symptom perception in heart failure (HF) has been identified as crucial for effective self-care, and is related to patient and health system outcomes. There is uncertainty regarding the feasibility and acceptability of symptom perception support and doubts regarding how to include informal caregivers. This study aims to test the feasibility, acceptability and outcome responsiveness of an intervention supporting symptom perception in persons with HF and their informal caregiver. Methods and analysis: A feasibility study with a quasi-experimental pretest and post-test single group design is conducted. The convenience sample consists of 30 persons with HF, their informal caregivers and six nurses. SYMPERHEART is an evidence-informed intervention that targets symptom perception by educational and support components. Feasibility is measured by time-to-recruit; time-to-deliver; eligibility rate; intervention delivery fidelity rate. Acceptability is measured by rate of consent, retention rate, treatment acceptability and the engagement in the intervention components. Outcome responsiveness includes: HF self-care (via the Self-care of Heart Failure Index V.7.2); perception of HF symptom burden (via the Heart Failure Somatic Perception Scale V.3); health status (via the Kansas City Cardiomyopathy Questionnaire-12); caregivers’ contribution to HF self-care (via the Caregiver Contribution to Self-Care of Heart Failure Index 2); caregivers’ burden (via the Zarit Burden Interview). Clinical outcomes include HF events, hospitalisation reason and length of hospital stay. Descriptive statistics will be used to report feasibility, acceptability, patient-reported outcomes (PRO) and clinical outcomes. PRO and caregiver-reported outcome responsiveness will be reported with mean absolute change and effect sizes. Ethics and dissemination: The study is conducted according to the Declaration of Helsinki. The Human Research Ethics Committee of the Canton of Vaud, Switzerland, has approved the study. Written informed consent from persons with HF and informal caregivers are obtained. Results will be published via peer reviewed and professional journals, and further disseminated via congresses. Trial registration number: ISRCTN18151041.

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Swāsthya, an integrated chronic condition management programme for families of patients with hypertension and diabetes mellitus: a study protocol for a randomised controlled trial

Background: Kerala is known as the diabetes mellitus (DM) and hypertension (HTN) capital of the world, thus compelling health professionals to model strategies, addressing their social, behavioural, and cognitive risk factors and eliminating various barriers to management. This paper describes the protocol of our study that aims to examine the effectiveness and sustainability of an integrated care model for the management of chronic conditions and their risk factors through a family-based intervention. The proposed care model targets to modify systems and processes that predispose to chronic conditions by enhancing social cohesion and social networks, preventing lifestyle risks, developing iterative cognitive interventions, and engaging the family into customised treatment adherence strategies navigated by community health social workers (CHSWs). Methods: A cluster randomised controlled trial (RCT) in selected participants will be conducted involving additional assessments prior to the baseline assessment. The assessment will identify and categorise patients into four risk groups, namely behavioural, social, cognitive, and multiple, based on dominant risks identified. Eligible participants will be randomly allocated (at a ratio of 1:1) into the intervention or control arm. The intervention arm will receive social, behavioural, and cognitive or multiple interventions corresponding to the identified risk groups, whereas the control arm will receive general intervention. Both the groups will be followed up at 6 months and 12 months post baseline to measure outcomes. The primary outcome will be the control of HTN and DM, and secondary outcomes include decreased depression and anxiety and improved functioning, social cohesion, and social network linkages. The sustainability and scalability of this intervention will be assessed through cost effectiveness, acceptability, and user friendliness of the integrated approach by performing a qualitative evaluation. Discussion: This RCT will inform the potential paradigm shift from a medical model of chronic condition management to a multidimensional, multisystem, and multidisciplinary convergence model navigated by CHSWs. Such a model is not currently considered in the management of chronic conditions in Kerala. Trial registration: Trial has been prospectively registered on Clinical Trial Registry of India- CTRI/2020/12/029474 on 1st December 2020.

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Supportive nursing care for family caregivers – A retrospective nursing file study

Background: Family caregivers enable patients to be cared for and die at home whereas nurses aim to support the family caregivers of these patients. Information on how this support is provided and how this is documented in nursing files is largely lacking. Objectives: To gain insight in nurses' reports on the supportive care for family caregivers. Methods: We studied 59 nursing files of adult patients who had received hospice home care in the Netherlands from 4 home care organisations between August 2017 and October 2018. Information on supportive nursing care for family caregivers was retrieved from the nursing files based on a prestructured form. Data was quantitatively and qualitatively analysed. Findings: 54 out of 59 nursing files contained information about family caregivers; 40 files contained nursing diagnoses on family caregivers and in 26 files nursing interventions on supportive care for family caregivers were reported. Only half of the nursing files contained information about supportive nursing care for family caregivers. Conclusions: Complete nursing documentation of provided care to family caregivers is needed. • Nurses should pay attention to the family caregivers' needs and experiences in palliative care. • Nursing documentation on supporting family caregivers is found to be incomplete. • Reported interventions to support family caregivers in palliative care were scarce. • Nurses may take into account two roles in the care for family caregivers: co-client and co-worker. • Assessment tools and proper documentation may help nurses to support family caregivers.

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Supportive care needs and service use during palliative care in family caregivers of patients with advanced cancer: a prospective longitudinal study

Purpose: This study aimed to investigate the supportive care needs of family caregivers (FCs) of advanced cancer patients and their support service use at the beginning of specialist inpatient palliative care (SIPC), near the patient's death, and during bereavement. Methods: FCs reported their needs using the Family Inventory of Needs (FIN), along with their utilization of psychosocial and bereavement support services at the beginning (N = 232) and 6–9 months after SIPC (N = 160). Results: At the beginning of SIPC, mean of 16.9 of 20 needs were reported to be highly important, and 12.2 were reported to be met. At the time of the patient's death, 16.8 needs were highly important, and 13.8 were met. At both time points, the highest ranked need was related to information about changes in the patient's condition (100% vs. 99%), and the most frequently unmet need was related to feeling hope (73% vs. 71%). Multivariate linear regression analysis revealed a low education level to be consistently related to a greater number of highly important needs. Higher satisfaction with care and better social support was related to a greater number of met needs. Twenty-five percent of FCs had accessed at least one psychosocial support service prior to SIPC, and 30% had done so during bereavement. Among non-users of support services, > 75% indicated sufficient informal support as a barrier to service use. Conclusions: The findings offer a useful guide for adequately addressing FCs' needs in an effort to optimize FC support. However, only a subgroup of the FCs used support services. Better information and provision of tailored services might improve FCs' situations in the future. 

 

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Supporting family carers of people with dementia: A discrete choice experiment of public preferences

Background: Community-based care for people with dementia is mainly provided by family carers, many of whom experience decreased mental, physical and financial well-being due to their caring role. Many countries are now implementing ageing-in-place policies that have increased pressure on family carers as care-work is redistributed from residential to community-based settings. Family caring responsibilities for people with dementia are made even more complicated by the economic, social and cultural expectations that underpin existing provision. Support for family carers is, therefore, an important policy topic across many countries. Objectives: The focus of this paper is on the propensity of citizens to support enhanced care for family carers in Ireland, as demonstrated by their willingness-to-pay additional taxation to fund different combinations of carer support measures, developed through careful and sustained dialogue with multiple stakeholders, especially family carers themselves. Methods: We carried out a discrete choice experiment (DCE) with 509 members of the general public in Ireland between January and February 2021. Results: Using mixed logit models, our findings show that citizens value four key attributes: regular caring breaks for family carers (day-care and long-break respite); financial compensation (carer's allowance); and emotional support (carer peer support groups). We also estimated the welfare impact of moving from current provision to enhanced support packages for family carers of people with dementia. The welfare gains accumulate to €1035.80 for the most complete levels of provision across the four support attributes. Conclusions: Overall, respondents in this paper showed empathy and understanding towards family carers of people with dementia through their willingness to contribute to funding additional services and supports. 

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Supporting family caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial

Introduction: The Carer Support Needs Assessment Tool encompasses the physical, psychological, social, practical, financial, and spiritual support needs that government policies in many countries emphasize should be assessed and addressed for family caregivers during end-of-life care. Aim: To describe the experience of family caregivers of terminally ill people of the Carer Support Needs Assessment Tool intervention in home-based palliative care. Methods: This study was conducted during 2012-2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. All 233 family caregivers receiving the Carer Support Needs Assessment Tool intervention provided feedback on their experiences via brief end-of-trial semi-structured telephone interviews. Data were subjected to a thematic analysis. Results: The overwhelming majority reported finding the Carer Support Needs Assessment Tool assessment process straightforward and easy. Four key themes were identified: (1) the practicality and usefulness of the systematic assessment; (2) emotional responses to caregiver reflection; (3) validation, reassurance, and empowerment; and (4) accessing support and how this was experienced. Conclusion: Family caregivers appreciated the value of the Carer Support Needs Assessment Tool intervention in engaging them in conversations about their needs, priorities, and solutions. The Carer Support Needs Assessment Tool presented a simple, yet potentially effective intervention to help palliative care providers systematically assess and address family caregivers' needs. The Carer Support Needs Assessment Tool provided a formal structure to facilitate discussions with family caregivers to enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services for family caregivers, ensuring that new or improved services are designed to meet the explicit needs of family caregivers. 

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Supporting adult carers

This quality standard covers the provision of support for adults aged 18 or over who provide unpaid care for 1 or more people aged 16 or over with health and social care needs. It describes high-quality care in priority areas for improvement.

It does not cover people who provide paid care or do so as voluntary work. 

This quality standard should be read together with the Care and support statutory guidance under the Care Act 2014 and the Children and Families Act 2014.

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Support, needs and expectations of family caregivers regarding general practitioners – results from an online survey

Background: Family caregivers are often the first line of support for people requiring care; although they may personally stand to benefit, these activities substantially increase the risk of physical and emotional stress. General practitioners (GPs) may provide important support and stabilisation, but need to adjust to the needs and expectations of this group in order to do so. Objectives: The aim of the study was to compare the needs of family caregivers from GPs to the support they actually experience. Additional aims included determining the main factors affecting satisfaction amongst family caregivers with support from GPs. The results were used to develop possible approaches towards optimisation within the purview of general medical practice. Methods: Between January and July 2020, 612 people supporting or caring for a family member responded to an online survey posted in seventeen internet forums focused on family caregivers. In addition to the descriptive analysis, a t-test with independent samples was used to identify significant differences between two groups. We also used binary logistic regression analysis to identify indications of potentially influential factors regarding the experienced support from GPs. Results: Around three out of every four respondents (72%) consulted GPs in care matters. The respondents gave positive responses on their GP's knowledge of the care situation (71%), approachability in various issues connecting with care and service towards the caregiver (82%). GPs' efforts in meeting the needs and requirements of the care recipient were also rated positively (82%). Weaknesses in support from GPs mainly involved the lack of information on advice and assistance services (55%) as well as frequently not identifying or involving caregivers as such soon enough (42%). Results from regression analysis show that the last two aspects play a major role in subjective satisfaction amongst family caregivers with support from GPs. Conclusions: We recommend that GPs undergo further training to reinforce awareness that the care triad of needs, requirements and stresses amongst family caregivers also plays a vital role in care outcomes. With this in mind, general practice staff should adopt a pre-emptive strategy towards approaching family members about potential issues and informing them about existing assistance and support services.

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Support Intervention for Families and Caregivers of Palliative Care Patients (QI701)

Objectives: 1. Develop a streamlined, routine psychosocial spiritual assessment among families and caregivers of palliative care patients. 2. Develop streamlined, routine psychosocial spiritual needs intervention among families and caregivers of palliative care patients. Background: Complicated grief is intense, debilitating grief for more than six months after loss and is predicted by pre-loss depressive symptoms and unmet psychosocial needs. Per the Clinical Practice Guidelines for Quality Palliative Care, families are at risk and their psychosocial-spiritual needs should be met to improve outcomes. Aim Statement: This initiative aims to develop a streamlined, routine psychosocial spiritual assessment and intervention of families and caregivers' needs to enhance support. Methods: A validated, confidential, 13-question tool (The American Academy of Hospice and Palliative Medicine's Chart Abstraction Checklist-Psychosocial Spiritual Assessment, edited with permission) was used to assess families of inpatient palliative care patients (n=46) over a three-month period. Identified needs were appropriately referred to a social worker, chaplain, or care manager. These assessments measured the number of needs identified and relationships among needs (p<0.05 is statistically significant). Results: Of those assessed, 97.8 percent had a need that required follow-up. A moderately significant relationship was established between those who felt they were coping well and those who reported the perception of a good support system (X2 =6.893, p=.009, Cramer's V of .387). Conclusions and Implications: Performing routine assessments resulted in a significant identification of unmet needs. Those who have greater perceived support reported coping well. Routine psychosocial spiritual assessments and appropriate interventions on caregivers should be continued with a focus on those who have a lack of a support system.

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Support groups for family caregivers of persons with dementia in India

Background: A caregiver support group was initiated at the Schizophrenia Research Foundation, Chennai, India. Objective: The study aimed to evaluate this service for 100 caregivers of persons with dementia, identify the needs met and explore the facilitating factors and barriers for participation. Findings: The support group met the information, emotional and counselling needs of caregivers. Trust between members was a key facilitating factor. Lack of help at home to support the person with dementia, distance from the venue and work commitments were barriers to caregiver participation. Conclusion: The study found that support groups fulfil an important need for caregivers by providing information and peer support.

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Subjective life experiences of family caregivers of dependent older adults

Objectives: This study aimed to understand the subjective meanings attributed to home care by family caregivers of dependent older adults through a multicenter qualitative investigation that gathered 84 in-depth interviews with family caregivers from eight Brazilian locations. Methods: The hermeneutic-dialectic, theoretical, methodological framework was employed. Findings: The following categories emerged from the analysis: 1. Movements inhibiting emotions and feelings; 2. Presence of processes of symbiosis and emotional dependence in the older adult-relative relationship; 3. Contentment in caring for the dependent older adult; and 4. Giving up current and future life projects. The results reveal life experiences marked by symbiotic processes, emotional dependence, and psychic stress. Dependence causes suffering and feelings of despair, powerlessness, impatience, but also solidarity and empathy. Withdrawal from the job market, social depreciation of family caregiver’s activity, social isolation, neglected self-care, and family conflicts impact caregivers’ subjectivity. Conclusions: The elaboration of public policies must consider the social-affective life experiences of family caregivers of dependent older adults in order to include the care of those providing care. 

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Subjective caregiver burden and anxiety in informal caregivers: A systematic review and meta-analysis

Background: There is increasing evidence that subjective caregiver burden is an important determinant of clinically significant anxiety in family carers. Objectives: This meta-analysis aims to synthesise this evidence and investigate the relationship between subjective caregiver burden and anxiety symptoms in informal caregivers. Methods: We searched PubMed, CINAHL and PsycINFO up to January 2020. Combined estimates were obtained using a random-effects model. After screening of 4,312 articles, 74 studies (with 75 independent samples) were included. Findings: There was a large, positive association between subjective caregiver burden and anxiety symptoms (r = 0.51; 95% CI = 0.47, 0.54; I2 = 0.0%). No differences were found in subgroup analyses by type of study design (cross-sectional vs. longitudinal), sampling, control of confounders or care-recipient characteristics. Subjective caregiver burden is an important risk factor for anxiety in informal caregivers. Conclusion: Targeting subjective caregiver burden could be beneficial in preventing clinically significant anxiety for the increasing number of family carers worldwide.

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Study of physical, psychological, and spiritual impact of family caregiver in home-based stroke treatment: A systematic review

Background: Family support during stroke treatment at home is crucial. However, post-stroke patients’ long-term care will be a problem for families, reducing the level of life satisfaction and physical burden for caregivers. Furthermore, families may experience depression. AIM: Analyzing family conditions related to physical, psychological, and spiritual conditions that receive home-based health worker interventions. Methods: Study implemented systematic review design with Prisma guidelines, initially with the identification of article sources, following by article screening, checking the eligibility of studies then appraised the selected articles. Three databases were used, Ebsco, PubMed, and PROQUEST. Only studies using quasi-experimental, pre-experimental, and RCT designs were included in this study. Furthermore, those articles were published between 2014 until 2019, full type article and conducted anykind of home intervention for stroke patients and/or family member. Keywords that were employed “Stroke, Apoplexy, Cerebrovascular Accident, Vascular Accident, Home Care Services, home care, Home Health Care, Domiciliary Care, Physical, Physics, Psychological Factors, Psychological Side Effects, Psychosocial Factors, Spirituality.” Totally, 19,528 articles were obtained. Finally, only six eligible articles met review requirements. Results: Implementation of home-based care lowered the physical fatigue of the family. In psychological responses showed that home-based care could reduce the incidence of depression and anxiety levels. Another impact was that the family felt helped because patients could more independently do their activities. Furthermore, the family always supported to motivate the patients to do their daily tasks. Conclusion: Home-based interventions for stroke patients can reduce depression, anxiety, and fatigue for the family caregiver. 

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Structural equation model of affecting factors on elder abuse to patients under hemodialysis by family caregivers

Background: The objectives of the present study were to determine the prevalence of older adults with hemodialysis (HD) abuse by family caregivers and the factors affecting it. Method: This is a correlational-causal study, which is conducted in 2018 in Iran. The sample size was 367 in both groups (the older adults and their family caregivers). Data collection was done using an individual-social information questionnaire for the older adults under hemodialysis and their family caregivers, the questionnaire of elder abuse by family caregivers to the older people under hemodialysis, Zarit Burden Interview and the scale of instrumental activities of daily living (IADL). Data were analyzed by the structural equation model (SEM) method. The Fitness of proposed pattern was measured using the following indexes: chi-square/degree of freedom ratio (CMIN/DF), Normed Fit Index (NFI), comparative fit index (CFI), goodness of fit index (GFI), and standardized root mean squared residual (SRMR). The significant level in this study was considered p < 0.05. Results: The results of the present study showed that more than 70 % of the older adults suffer from elder abuse by family caregivers on average. The highest median elder abuse was related to emotional misbehavior (21.46 ± 6.09) and financial misbehavior (19.07 ± 5.33), respectively. Moderate care burden was experienced by 63.2 % of caregivers. The percentage of older women and men, who needed help with daily activities was 81.4 and 80.5 %, respectively. The results showed that the caregivers’ level of education and care burden with standard beta coefficient of -0.251 and 0.200 and the educational level of older adults and IADL with the best beta coefficient of -0.299 and − 0.234, had the highest regression effect on elder abuse respectively. According to the results, the model-fit indices of the hypothesized model was meet the criteria, with the NFI = 0.951, GFI = 0.970, CFI = 0.967, and SRMR = 0.041. The outcome was suitable for the recommended level, so the hypothetical model appeared to fit the data. Conclusions: The results of the present study showed that the prevalence of elder abuse by family caregivers among the older adults under hemodialysis is high. Providing psychological counseling can reduce the consequences of elder abuse.

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Steering towards collaborative assessment: a qualitative study of parents' experiences of evidence-based assessment practices for their child with cerebral palsy

Background: To understand parents' experiences of evidence-based assessment by health professionals for their child with cerebral palsy. Method: A qualitative interpretive description study was undertaken. Primary carers of children with cerebral palsy (aged 3–18 years) from south-eastern Australia were invited to participate. Face-to-face interviews were held using a semi-structured topic guide and data analyzed inductively. Credibility was ensured through: journal reflections; co-author review; audit trail; and, participant member-checking. Fourteen parents of children with cerebral palsy, representing Gross Motor Functional Classification System levels I–V, participated. Findings: Six themes emerged: (1) Protection; (2) Positively Framed; (3) Bridging the Gap; (4) Involvement; (5) Finding Worth; and (6) Trust. Central to parents' experience was protection of their child's identity and personal self. Assessment can be emotionally confronting, at any stage. Representing the child positively and highlighting possibilities was deemed essential. Parents' involvement ranged from being overlooked spectators to being instigators of assessment. Evidence-based assessment was worthwhile when relevant to parents' direction and family context. The researchers' interpretive description generated a schema and metaphor—the Steering Wheel for Collaborative Assessment. A strengths-based approach to diagnosis and assessment is essential. The resulting interpretive description may assist health professionals align evidence-based assessment practices with family-centred care. Parents of children who have cerebral palsy describe having to protect their child's identity and representation, and their own personal well-being, through evidence-based assessment and diagnostic processes. Involving parents in the process of evidence-based assessment and adopting a strengths-based approach is essential. Conclusions: The interpretive description developed—the Steering Wheel for Collaborative Assessment—may assist health professionals to implement evidence-based assessment tools in ways consistent with family-centred care principles.

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Stakeholders’ perspectives on adapting the World Health Organization iSupport for Dementia in Australia

Background: In Australia, informal caregivers (family, friends and neighbours) play a crucial role in supporting people with dementia to remain at home. Within the community aged care policy, informal caregivers are acknowledged as assisting with managing care. However, they usually receive very limited dementia care education and training to support them in their role. The World Health Organization (WHO) developed iSupport for Dementia, a comprehensive online dementia education and skill training programme, to address the gap in supporting informal caregivers. Aim: The aim of the study was to identify stakeholders’ perspectives regarding adapting the WHO iSupport for use by informal caregivers of people with dementia in Australia. Methods: An interpretive description study design was used. Data were collected in focus groups with informal caregivers and care staff of dementia and aged care service providers conducted in May–July 2018. A thematic analysis was utilised to analyse data and identify findings. Results: In total, 16 informal caregivers and 20 care staff participated in the study. Five themes were identified. First, informal caregivers perceived iSupport as an opportunity to provide an online one-stop shop to meet their education needs and their needs to manage care services. Second, both informal caregivers and care staff believed that an integrated caregiver network moderated by a health professional was much needed to enable informal caregivers to share learning experiences and enhance social support. Third, both informal caregivers and care staff strongly suggested that dementia and aged care service providers had a role to play in promoting the iSupport. Fourth, informal caregivers were concerned about the time commitment to participate in the iSupport programme. Finally, informal caregivers expected the iSupport to be user-friendly. Conclusion: Stakeholders perceived the adaptation of the WHO iSupport in Australia would strengthen informal caregiver education and optimise support for informal caregivers. 

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Solution to support informal caregivers of patients with dementia

Background: The dementia is a degenerative uncurable disease. Giving its high prevalence worldwide, it is considered a major global public health concern. Patients with dementia need long-term care and support at home. Current evidence demonstrates that their informal caregivers are prone to psychiatric and cardiovascular diseases and lack formal support that can help them in their exhausting daily routine. We intend to report the creation of an ICT solution to support informal caregivers of patients with dementia, addressing identified needs. Methods: The academic engineering project launched was divided in two phases: 1) requirements analysis and software design and 2) software development and deployment. The user-friendly and smooth functioning application developed, called OneCare, has a set of functionalities that allows the free access to information about the disease, useful resources, medication, outpatient consultation management and communication with peers. Discussion: We consider that this application may improve effectiveness in care provided by informal caregivers of patients with dementia, while having a positive impact in their health outcomes and quality of life. We advocate that future policies in this area should consider the use of this kind of technology as a way to reduce disease burden, institutionalization needs and increase the chances of living well at home.

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Short-term impacts of COVID-19 on family caregivers: Emotion regulation, coping, and mental health

Background: The negative mental health impact of coronavirus disease 2019-related stressors may be heightened for those caring for children, who bear responsibity for their welfare during disasters. Aim: Based on the Transactional Model of Stress and Coping, we inquired whether caregivers' emotion regulation and coping behavior were associated with posttraumatic stress symptoms (PTSS). Materials & Methods: Data were collected through a national online survey in April 2020, and again 60 days later. Results: Of the 801 longitudinal cases, 176 (63.6% female; mean age = 33.5) reported caring for minors in their homes during the pandemic. Over 20% of caregivers experienced clinically concerning PTSS, rates higher than their noncaregiving counterparts. Regression analysis indicates caregivers' baseline mental health symptoms and emotion regulation predicted PTSS 60 days later. Discussion: Implications for needed parenting supports among families experiencing traumatic stress are provided. Conclusion: Anxiety symptoms at baseline were the most significant and consistent contributor to all models and were significantly higher among those with clinically concerning levels of PTSS suggesting a clear intervention target.

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Sensitizing family caregivers to influence treatment compliance among elderly neglected patients—a 2-year longitudinal study outcome in completely edentulous patients

Background: Healthcare workers have reported a certain segment of geriatric patients that are suffering from abuse/neglect, which in turn has been associated with anxiety, depression, and helplessness in the individual. Family caregivers (blood relations), being the most common perpetrators of elder abuse and neglect (EAN), have also been shown to respond to sensitization if the type of EAN and the interventions are appropriate. Objectives: This study was aimed to comparatively analyze the influence of intervention (psychotherapeutic sensitization of FCG) upon long-term (24 months) treatment maintenance and satisfaction in elderly neglected patients. Methods: One hundred and fifty patients (aged 41–80 years) suffering from elder neglect (EN) (self-confession) and their respective FCGs, fulfilling the study criteria, participated in this longitudinal 2-year study. The patients were randomly dis-tributed (simple random, convenient) in two equal groups (75 each), namely Group (GP) A (control) and GP B (test). A standardized, complete denture treatment was initiated for all the participants. Both the FCGs and the patients of GP B were sensitized (psychotherapeutic education) for EN, while there was no such intervention in GP A. The influence of such intervention was measured for denture maintenance [denture plaque index (DPI) scores] and treatment satisfaction (10-point visual analog scale). Absolute/relative frequencies and means were major calculations during data analysis. Differences between the groups for any treatment compliance parameter was done through the unpaired t-test, while Karl Pearson’s test determined the level of relationship between variables (p-value < 0.05). Results: Decrease in mean DPI scores (suggesting improvement) was seen among patients in GP A from 1 month (m = 2.92) to 24 months (m = 2.77). A negligible increase in DPI scores was observed among patients of GP B from 1 month (m = 1.38) to 24 months (m = 1.44). Differences in mean values between the two groups were statistically significant at 24-month intervals, while the relationship between the variables was nonsignificant. FCG sensitization through psychotherapeutic education shows a long-term positive influence on the treatment compliance (maintenance and satisfaction). Conclusions: Identifying the existence of EAN among geriatric patients, followed by psychothera-peutic education of FCGs is recommended for routine medical and dental long-duration treatment procedures. 

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Self-Management Coaching: Promoting postoperative recovery and caregiving preparedness for patients with lung cancer and their family caregivers

Background: Quality of life (QOL) for patients undergoing lung resection and their family caregivers (FCGs) is often affected by surgical treatment for lung cancer. Objectives: Patients and FCGs have a great deal of distress that affects their QOL. Introducing self-management skills soon after diagnosis improves patient and FCG outcomes. Methods: This article presents a intervention model for providing patients and FCGs with self-management skills. Patients and FCGs will learn how to identify and overcome challenges, set goals, and address unmet needs throughout the phases of surgery. The model and case examples are presented. Findings: Patients and FCGs gained self-efficacy. They were able to identify potential stressors that would otherwise become burdensome. Patients remained in control of their preoperative care and recovery, resulting in continued independence. FCGs achieved healthier well-being, which increased positive caregiving experiences.

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Scoping Review of Family Interventions That Support the Physical Health of Caregivers

Purpose: Family interventions have been developed to support carers of people with mental illness, but not much is known about how such interventions can improve carers' physical health. This review aimed to identify and analyze existing family interventions that addressed the physical health of carers. Methods: A scoping review was conducted to identify peer-reviewed journal articles on family interventions with physical health components. A total of six articles were found and analyzed thematically to identify the family interventions, physical health components of the interventions, and associated physical health outcomes. Results: Synthesis of the findings from relevant articles showed that the development of physical health components in family interventions is emerging and at an early stage. However, most studies had physical health as a minor area focusing mainly on stress and sleep. Conclusions: Family interventions would be more holistic if consideration of physical health issues was addressed as a core module.

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The scope of carer effects and their inclusion in decision-making: a UK-based Delphi study

Background and objective: Health and social care may affect unpaid (family) carers’ health and wellbeing in addition to patients’ lives. It is recommended that such impacts (carer effects) are considered in decision-making. However, the scope of carer effects and range of decisions where carer effects should be considered is uncertain. This study aimed to identify: (i) how different categories of healthcare and social care were perceived to impact on unpaid carers; and (ii) whether there was consensus about when carer effects should be formally considered in decision-making contexts. Methods: A two round, online Delphi study was conducted with 65 UK-based participants (unpaid carers, care professionals, and researchers) with expertise in dementia, mental health, and stroke. Participants considered two broad forms of ‘interventions’ (patient treatment and replacement care) and two broad forms of ‘organisational change’ (staffing and changes in timing/location of care). Participants assessed the likely impacts of these on unpaid carers and whether impacts should be considered in decision-making. Results: Participants predicted interventions and organisational changes would impact on multiple domains of unpaid carers’ lives, with ‘emotional health’ the most likely outcome to be affected. Patient treatment and replacement care services (‘interventions’) were associated with positive impacts across all domains. Conversely, timing/location changes and staffing changes (‘organisational changes’) were perceived to have mixed and negative impacts. There was widespread support (80–81 %) for considering carer effects in research studies, funding decisions, and patient decision-making. Conclusions: This study highlights a perception that carer effects are widespread and important to consider in economic evaluation and decision-making. It highlights the particular need to measure and value effects on carers’ emotional health and the need to use a societal perspective to avoid cost shifting to unpaid carers when introducing interventions and making organisational changes.

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Replicating an effective VA program to train and support family caregivers: a hybrid type III effectiveness-implementation design

Background: Caring for a growing aging population using existing long-term care resources while simultaneously supporting and educating family caregivers, is a public health challenge. We describe the application of the Replicating Effective Programs (REP) framework, developed by the Centers for Disease Control Prevention and used in public health program implementation, to scale up an evidence-based family caregiver training intervention in the Veterans Affairs (VA) healthcare system. Methods: From 2018 to 2020, clinicians at eight VA medical centers received REP-guided implementation including facilitation, technical assistance, and implementation tools to deliver the training program. The project team used the REP framework to develop activities across four distinct phases – (1) pre-conditions, (2) pre-implementation, (3) implementation, and (4) maintenance and evolution – and systematically tracked implementation facilitators, barriers, and adaptations. Results: Within the REP framework, results describe how each medical center adapted implementation approaches to fit local needs. We highlight examples of how sites balanced adaptations and intervention fidelity. Conclusions: The REP framework shows promise for national expansion of the caregiver training intervention, including to non-VA systems of care, because it allows sites to adapt while maintaining intervention fidelity. Trial registration NCT03474380. Date registered: March 22, 2018.

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Relieving distressed caregivers (ReDiCare study): study protocol of a randomized pragmatic trial

Background: Providing care for someone with a disease or chronic condition can have a negative psychological, physical, social, and economic impact upon informal caregivers. Despite the socio-economic relevance and more than three decades of caregiver intervention research only very few translational efforts of successful interventions are reported. Still less of these interventions have been implemented into routine services. Objectives: The aim of the ReDiCare study (German acronym BerTA) is to evaluate the effectiveness of a stepped counselling approach for burdened caregivers delivered by care counsellors of two long-term care insurances and registered psychotherapists. Methods/design: A pragmatic randomised controlled trial with 572 caregivers of older adults (≥ 60 years) receiving benefits of one of the two participating long-term care insurances. Participants are assigned (t0) to either the ReDiCare intervention or a control group receiving routine care and counselling. Data are collected at baseline (-t1), 3-month (t1), 9-month (t2) and 15-month (t3). The 9-month post-intervention assessment (t2) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. Depressive symptoms measured with the CES-D are the primary outcome. The main secondary outcomes are physical complaints, utilization of psychosocial resources, caregiver self-efficacy and burden, positive aspects of caregiving and perceived care quality. A process evaluation, including audio tapes, self-report questionnaires and documentation will be conducted to examine internal and external validity of the intervention. Data on direct and indirect costs are collected for the (health) economic evaluation, using a health care perspective and a societal perspective. Discussion: While comparable previous caregiver interventions have been developed and evaluated for specific caregiver groups (e.g. dementia caregivers, stroke caregivers), the ReDiCare study will indicate whether a stepped approach will be effective also in a broader group of caregivers. The intervention is one of the very few translational studies in caregiver intervention research and will provide valuable insights into relevant factors for training, intervention protocol adherence, effectiveness, and costs for future implementation steps. Trial registration Deutsches Register Klinischer Studien (German Clinical Trials Register), DRKS00014593 (www.drks.de, registered 14 May 2018) and International Clinical Trials Registry Platform, DRKS00014593 (https://apps.who.int/trialsearch/).

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Relationship-centred CogniCare: an academic–digital–dementia care experts interface

Purpose: This paper aims to reports on an academic–industry service development innovation to advance the symptom monitor and track feature within the CogniCare app to support family carers of people living with dementia. Expert opinion from dementia care professionals identified key monitoring strategies for enhanced carer competence and confidence in the early identification of relevant symptoms that would help facilitate meaningful hospital/social care consultations. Design/methodology/approach: A co-production approach between industry and academia included stakeholder representation from NHS Highland and Alzheimer Scotland. Dementia care experts validated items to be included for symptom monitoring and tracking using a newly developed A2BC2D2EF2 framework as part of this project and recommended additional strategies for monitoring symptom change, including carer well-being. Findings: Dementia care experts perceived the symptom monitoring and track feature to have the potential to support family carers with dementia care at home and foster a relationship-centred approach to dementia care to facilitate meaningful hospital/social care consultations. Originality/value: The CogniCare app is the first platform of its kind that aims to support family carers to care for people living with dementia at home. This unique service development collaborative combined dementia and digital expertise to create innovative digital solutions for dementia care. The proposed monitoring and tracking feature is perceived by dementia care experts as a tool with the potential to enhance carer confidence and thus enable safe and effective dementia care within the home environment.

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Relational counselling as a psychosocial intervention for dementia: Qualitative evidence from people living with dementia and family members

Background: Counselling and other psychotherapeutic interventions can be offered to people with dementia and their caregivers, to treat specific conditions or symptoms (e.g. affective disorders such as depression). Psychotherapeutic interventions also offer the opportunity for individuals with dementia and their families/caregivers to engage in psychological support for a wide range of presentations. However, little is known about how those within this demographic who receive these interventions perceive the experience. Objectives: This study aimed to understand the experiences of individuals with dementia or caring for someone with dementia, before and after a 12-week relational counselling intervention delivered through a third sector organisation within England. Methods: Semi-structured interviews were completed with participants (29 pre-intervention and 25 post-intervention). Framework analysis was conducted, with four main themes identified; expectations and outcomes of counselling, emotional impact of life with dementia, appraisals of identity and importance of therapeutic relationship. Results: Participants reported that counselling interventions addressed a range of needs and concerns that they had, enabling them to reassess and reconsider these. Specific training is needed before therapists deliver therapeutic interventions with people with dementia, to ensure that appropriate support is provided for those with more severe cognitive impairment or who may have fluctuating capacity. Conclusions: Future research should explore the experiences of people with dementia and their caregivers, across different counselling modalities, to establish the appropriateness and effectiveness of relational counselling.

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Ready and able? Professional awareness and responses to young carers in Switzerland

Background:  It is unknown how Swiss professionals support for young carers.  Previous national research suggests a lack of support services for young carers.  Professionals do provide individual as well as a family-centred support.  Social services seem to be most inclined to initiating interdisciplinary support. The situation of children, adolescents, young adults with caring responsibilities and their families has only recently been addressed in the Swiss context. Initial findings show a low level of awareness among professionals towards young people with caring responsibilities, and also a lack of specific support services nationally for young carers. This might suggest that the support needs of young carers and young adult carers are not currently being recognised or met in Switzerland. Objectives: The purpose of this analysis was to explore to what degree young carers' needs for support are currently met by professionals. We evaluated how professionals in Switzerland currently support young carers in their occupational context; what kind of organisations they refer young carers to; and if the current support approaches meet international recommendations (drawn from research and policy in other countries). Methods: Data from a cross-sectional online survey completed by 2142 professionals from education, healthcare and social services in Switzerland were analysed. The data included respondents' demographics, professional background, awareness of young carers' situations and circumstances, ability to support young carers, referrals to other organisations, as well as approaches to support young carers. We conducted text analysis of the open-ended answers according to Kuckartz (2014) as well as descriptive statistical analysis and Chi-Square independence tests. Just over half (55.8%) of the professionals in our study reported being able to support young carers. Findings: Five different categories of support interventions were identified: counselling ; connecting with others ; emotional support ; including the family/network; and providing practical skills & illness-related knowledge. Professionals who reported that they themselves had a caring role when they were young were more likely to be able to support young carers (p <.001). Professionals familiar with the term 'young carers' more often mentioned systemic support approaches (such as family-centred procedures and coordination/interdisciplinary cooperation) than those who were not familiar with the term. Study results show that many professionals in Switzerland address relevant realms and specific challenges for young people with caring responsibilities without being familiar with the experiences or needs of young carers. How they support young carers and young adult carers, perhaps surprisingly given their lack of awareness and specific knowledge, correspond with the main approaches currently found in the international literature recommendations for professionals working with young carers. The fact that systemic approaches of support were less often described, especially by professionals unfamiliar with the term 'young carer', raises the question whether appropriate sustainable and long-term support can be provided without having a clear understanding of the concept, experiences and specific needs of young carers. Conclusions: The study results provide a national starting point to develop support provisions and interventions for young carers. The results also offer relevant data for policy recommendations.

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A randomized wait-list controlled trial of a social support intervention for caregivers of patients with primary malignant brain tumor

Background: Informal family caregivers constitute an important and increasingly demanding role in the cancer healthcare system. This is especially true for caregivers of patients with primary malignant brain tumors based on the rapid progression of disease, including physical and cognitive debilitation. Informal social network resources such as friends and family can provide social support to caregivers, which lowers caregiver burden and improves overall quality of life. However, barriers to obtaining needed social support exist for caregivers. To address this need, our team developed and is assessing a multi-component caregiver support intervention that uses a blend of technology and personal contact to improve caregiver social support. Methods: We are currently conducting a prospective, longitudinal 2-group randomized controlled trial which compares caregivers who receive the intervention to a wait-list control group. Only caregivers directly receive the intervention, but the patient-caregiver dyads are enrolled so we can assess outcomes in both. The 8-week intervention consists of two components: (1) The electronic Social Network Assessment Program, a web-based tool to visualize existing social support resources and provide a tailored list of additional resources; and (2) Caregiver Navigation, including weekly phone sessions with a Caregiver Navigator to address caregiver social support needs. Outcomes are assessed by questionnaires completed by the caregiver (baseline, 4-week, 8-week) and the cancer patient (baseline, and 8-week). At 8 weeks, caregivers in the wait-list condition may opt into the intervention. Our primary outcome is caregiver well-being; we also explore patient well-being and caregiver and patient health care utilization. Discussion: This protocol describes a study testing a novel social support intervention that pairs a web-based social network visualization tool and resource list (eSNAP) with personalized caregiver navigation. This intervention is responsive to a family-centered model of care and calls for clinical and research priorities focused on informal caregiving research. Trial registration clinicaltrials.gov, Registration number: NCT04268979; Date of registration: February 10, 2020, retrospectively registered.

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A randomized controlled trial evaluating the effects of a family-centered HIV care model on viral suppression and retention in care of HIV-positive children in Eswatini

Introduction: A family-centered care model (FCCM) providing family-based HIV services, rather than separate adult/pediatric services, has been proposed to increase pediatric retention and treatment adherence. Materials and methods: Eight health-care facilities in the Hhohho region of Eswatini were randomized to implement FCCM (n = 4) or continue standard-of-care (SOC) separate adult/pediatric clinics (n = 4). HIV-positive children and caregivers were enrolled; caregiver interview and child/caregiver chart abstraction were done at enrollment and every three months; pediatric viral load was evaluated at enrollment and every six months through 12 months. Because of study group differences in 12-month viral load data availability (89.4% FCCM and 72.0% SOC children had 12-month viral load), we used three separate analyses to evaluate the effects of FCCM on children's viral suppression (<1,000 copies/mL) and undetectable virus (<400 copies/mL) at 12 months. In the first analysis, all children with missing viral outcome data were excluded from the analysis (modified intent to treat, mITT). The second analysis used inverse probability of missingness weighted logistic regression to estimate the effect of FCCM on 12-month viral outcomes compared to SOC (weighted mITT). For the third approach, missing virologic outcome data were imputed as virologic failure (imputed ITT). We also examined factors associated with viral suppression at 12 months using multivariable logistic regression. Results: We enrolled 379 HIV-positive children and 363 caregivers. Among all children at enrollment, viral suppression and undetectability was 78.4% and 73.9%, respectively, improving to 90.2% and 87.3% at 12 months. In mITT and weighted mITT analyses, there was no significant difference in children's 12-month viral suppression between FCCM and SOC groups (89.2% and 91.6%, respectively). Using imputed ITT, there was a modest increase in 12-month viral suppression in FCCM versus SOC children (79.7% and 69.8%, respectively, p = 0.051) and 12-month undetectability (78.7% and 65.7%, respectively, p = 0.015). Among the 255 children suppressed at enrollment, more FCCM versus SOC children (98.0% versus 95.3%) were suppressed at 12-months, but this was not statistically significant in mITT or weighted mITT analyses, with a marginally significant difference using imputed mITT analysis (p = 0.042). A higher proportion of children suppressed at enrollment had undetectable viral load at 12 months in FCCM versus SOC children (98.0% versus 92.5%), a statistically significant difference across analytical methods. Among the 61 children unsuppressed at enrollment, achieving suppression was higher among SOC versus FCCM children, but this difference was not statistically significant and included only 38 children; and there were no significant differences in detectable viral load at 12 months. There were no significant differences between study groups in retention or ART adherence at 12 months for children or caregivers. Factors associated with lack of viral suppression/detectability at 12 months included lack of viral suppression at enrollment and having a younger caregiver (age <25 years). Conclusions: FCCM in Eswatini was associated with a modest increase in viral suppression/undetectability at 12-months; 12-month retention and adherence did not differ by study group for children or caregivers. High levels of suppression and retention in both groups may have limited our ability to detect a difference. Trial registration: NCT03397420; ClinicalTrials.gov. 

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A randomized clinical trial assessing a pragmatic intervention to improve supportive care for family caregivers of patients with lung cancer

Objective: Family caregivers (FCs) of cancer patients often experience high distress. This randomized clinical trial assessed the feasibility and preliminary effects of an intervention to improve FC supportive care. Method: A pragmatic and minimal intervention to improve FC supportive care was developed and pretested with FCs, oncology team, and family physicians to assess its relevance and acceptability. Then, FCs of lung cancer patients were randomized to the intervention or the control group. The intervention included (1) systematic FC distress screening and problem assessment in the first months after their relative cancer diagnosis, and every 2 months after; (2) privileged contact with an oncology nurse to address FC problems, provide emotional support and skills to play their caregiving role; (3) liaison with the family physician of FCs reporting high distress (distress thermometer score ≥4/10) to involve them in the provision of supportive care. Distress, the primary outcome, was measured every 3 months, for 9 months. Secondary outcomes included quality of life, caregiving preparedness, and perceived burden. At the end of their participation, a purposive sample of FC from the experimental group was individually interviewed to assess the intervention usefulness. Content analysis was performed. Results: A total of 109 FCs participated in the trial. FC distress decreased over time, but this reduction was observed in both groups. Similar results were found for secondary outcomes. However, FCs who received the intervention felt better prepared in caregiving than controls (p = 0.05). All 10 interviewed FCs valued the intervention, even though they clearly underused it. Knowing they could contact the oncology nurse served as a security net. Significance of results: Although the intervention was not found effective, some of its aspects were positively perceived by FCs. As many of them experience high distress, an improved intervention should be developed to better support them.

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A qualitative systematic review protocol to examine the experiences and needs of informal caregivers of patients with glioma

Background: Gliomas are the most common primary malignant brain tumors in adults. It has a devastating impact on the cognitive, physical, social, and psychological well-being of patients. Informal caregivers refer to family members, friends, and other carers of the patient who provide unpaid care for patients. They provide physical and psychological support for patients and the family during the disease process. Despite this, there is a paucity of knowledge regarding the experiences and needs of glioma caregivers across the disease trajectory. Methods: A systematic review will be conducted to identify the experiences and needs of informal caregivers of patients with glioma. Seven English databases and four Chinese databases will be analyzed. The search is limited to peer-reviewed full-text articles published either in English or Chinese, with no restrictions on the publication period. According to the Joanna Briggs Institute (JBI) manual for evidence synthesis, two independent reviewers will apply the JBI Critical Appraisal Checklist for Qualitative Research to evaluate the methodological quality of each study. The JBI meta-aggregation method will subsequently be used to synthesize the data, eventually forming themes, categories, and findings. Discussion: The systematic review is expected to be the first qualitative synthesis of evidence pertains to the experience of family caregivers for glioma patients. The findings generated from the systematic review may be rewarding for researchers to improve care and quality of life for glioma patients and their family members. Trial registration: PROSPERO CRD42020222307. 

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A Qualitative Study of Older Patients' and Family Caregivers' Perspectives of Transitional Care From Hospital to Home

Background and Purpose: The need for high-quality long-term healthcare services is increasing across the globe as the population ages. Strategies for improving transitional care from hospital to home are needed. This study aimed to explore the perspectives of patients aged 65 years and over and their family caregivers transitioning from hospital to home in an urban area of Turkey. Methods: Thematic analysis of in-depth semi-structured interviews was conducted with older patients (n = 14), with at least one chronic disease and admitted to the hospital for a minimum of 3 days, and family caregivers (n = 11) who voluntarily participated. Results: Main themes were "confused feelings of safety and stress"; "worried about being left alone"; and "disrupted healthcare journey." The proactive rehabilitation model was used to elaborate on the study findings and interpret the perspectives and experiences of older patients and their family caregivers, which can be used for improving the quality of care after discharge from hospital. Implications for Practice: A high-quality transitional care program requires taking care of the feeling of safety in older patients and their family caregivers by the multidisciplinary team and their enhanced involvement in care initiatives after hospital discharge.

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A qualitative investigation into the impact of hemophagocytic lymphohistiocytosis on children and their caregivers

Background: Primary hemophagocytic lymphohistiocytosis (pHLH) is a rare and life-threatening disorder, which usually occurs during infancy or early childhood and is characterized by abnormal activation of the immune system. However, the burden of pHLH on children and their families has not been previously evaluated. Methods: This qualitative study investigated the impact of pHLH and its treatment on the physical, emotional, and social well-being of patients and caregivers in the USA and UK using interviews to provide a comprehensive insight from the perspective of the caregivers and young survivors. Results: Twenty-one caregivers were enrolled (median [range] age, 41.1 [26-58] years) and represented 20 patients, four from the UK and 16 from the USA. At enrollment, 17 of the 20 patients were alive with a median [range] age of 12.75 [5-31] years at a mean [range] of 7.8 [0.6-11.6] years after diagnosis. In addition, four adult survivors (median [range] age, 23.3 [21-30] years) were also enrolled (total participants n = 25). From noticing initial symptoms to receiving a diagnosis, caregivers reported a mean (range) of 25.9 (0-258) months. pHLH and its treatment had a substantial and long-lasting impact on patients and caregivers, affecting their physical, emotional and social well-being, family relationships, friendships, and ability to work and study. Many of the experiences reported were negative, even after curative treatment, and some participants experienced long-lasting physical and emotional issues. The most noticeable impact of pHLH for patients was on their physical well-being, whereas for caregivers it was emotional well-being. Across all participants there was a sense of isolation due to the illness and its treatment, particularly regarding the patient being immunocompromised and the fear of infection. Areas having a major impact and considered in need of improvement included: delays in diagnosis, lack of patient-specific information on pHLH and a lack of support and understanding about the condition. Conclusions: pHLH placed a substantial burden on patients and caregivers, which for some were long-lasting. This was compounded by the lack of awareness and understanding of pHLH by healthcare professionals, and a lack of accessible information for those affected by pHLH. 

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A qualitative exploration of family carer's understandings of people with dementia's expectations for the future

Background: There is little evidence that outlines how family carers understand the person with dementia's perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers – otherwise known as care partners – require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire. Aim: This research aimed to explore and describe family carers' experience of supporting the person with dementia to maintain their quality of life by understanding how carers developed an awareness and understanding of the person with dementia's expectations for the future and what they believed was important for the person to whom they provided care. Method: Using an application of the grounded theory method, data were collected from 21 carers during semi structured interviews and analysed using constant comparative analysis. Findings: Four categories emerged from the data: Knowing the person, Process of decision making, Maintaining normalcy and quality of life and Out of their control. Discussion: This study provides insights into how carers developed awareness of the expectations of people with dementia. Findings also illuminate carers' perspectives of the changing nature of decision making during the dementia trajectory. Conclusion: Understanding the perspective of the person living with dementia is essential to facilitate advocacy and support that is 'person centred' now and into the future. Assisting carers to incorporate this perspective into caring has the potential to be better facilitated by health professionals and merits further investigation.

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Qigong mind-body program for caregivers of cancer patients: design of a pilot three-arm randomized clinical trial

Background: Informal caregivers, often family and friends, experience significant psychological and physical distress leading to reductions in health and quality of life (QOL). Mind-body interventions focused on caregivers are often limited and do not address multiple barriers, including caregivers’ economic, geographic, and time constraints. Translation of in-person, community-based interventions to Internet-based delivery may offer greater accessibility for caregivers, leading to increased adherence. Methods: Caring for Caregivers with Mind-Body implements a three-arm, pilot, randomized controlled trial to evaluate the feasibility of delivering a Qigong intervention (Eight Brocades) to cancer caregivers. A total of 54 cancer caregivers will be randomized into one of three 12-week programs: (1) community-based Qigong, (2) Internet-based Qigong, or (3) a self-care control group. Study-specific aims include (1) modify intervention content for online delivery, (2) evaluate the feasibility of recruiting and retaining cancer caregivers into a 12-week clinical trial, and (3) evaluate the feasibility of collecting and managing data, and the suitability of questionnaires for this population. Several outcomes will be assessed, including caregiver QOL, caregiver burden, caregiver distress, perceived social support, physical function, and cognitive function. A 6-month follow-up will also assess longer-term changes in QOL and psychosocial well-being. Discussion: Findings will be used to inform the design and conduct of a large-scale comparative effectiveness trial evaluating caregivers who received Qigong training delivered through community-based vs Internet-based programs. A finding that either or both programs are effective would inform care and options for caregivers. Trial registration NCT04019301; registered on July 15, 2019; clinicaltrials.gov

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Psychosocial interventions to support the mental health of informal caregivers of persons living with dementia – a systematic literature review

Background: Informal caregivers of persons living with dementia have an increased risk of adverse mental health effects. It is therefore important to systematically summarize published literature in order to find out which mental health interventions generate effective support for informal caregivers of persons living with dementia. Objectives: The objective of this study is to conduct a systematic review of intervention content, effectiveness and subgroup differentiation of mental health interventions for informal caregivers of persons with dementia living at home. Method: We searched four electronic databases (PubMed, PsychINFO, Scopus and CINAHL) and included only methodically high-quality randomized controlled trials (RCTs), published in English or German language between 2009 and 2018. The intervention programmes focused on mental health of family caregivers. A narrative synthesis of the included studies is given. Results: Forty-eight publications relating to 46 intervention programmes met the inclusion criteria. Burden, depression and quality of life (QoL) are the predominant parameters that were investigated. Twenty-five of forty-six interventions (54.3%) show positive effects on at least one of the outcomes examined. Most often, positive effects are reported for the outcome subjective burden (46.2%). Only six studies explicitly target on a certain subgroup of informal dementia caregivers (13%), whereas all other interventions (87%) target the group as a whole without differentiation. Conclusion: The most beneficial results were found for cognitive behavioural approaches, especially concerning the reduction of depressive symptoms. Besides this, leisure and physical activity interventions show some good results in reducing subjective caregiver burden. In order to improve effectiveness, research and practice may focus on developing more targeted interventions for special dementia informal caregiver subgroups.

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Psychosocial and economic impact of rheumatic diseases on caregivers of Mexican children

Background: Pediatric rheumatic disease (PRD) patients and their caregivers face a number of challenges, including the consequences of the PRD in patients and the impact on multiple dimensions of the caregivers’ daily lives. The objective of this study is to measure the economic, psychological and social impact that PRD has on the caregivers of Mexican children. Methods: This is a multicenter, cross-sectional study including primary caregivers of children and adolescents with PRD (JIA, JDM and JSLE) during April and November, 2019. A trained interviewer conducted the CAREGIVERS questionnaire, a specific, 28-item multidimensional tool validated to measure the impact on different dimensions of the lives of caregivers. Sociodemographic, clinical, and healthcare system data were collected for further analysis. Results: Two hundred participants were recruited (women 169, 84.5%, aged 38 [IQR 33–44] years); 109 (54.5%) cared for patients with JIA, 28 (14%) JDM and 63 (31.5%) JSLE. The healthcare system was found to be determinant on the impact of the disease. The emotional impact was higher in all the participants, regardless of the specific diagnoses. The social dimension showed significant differences regarding PRD, healthcare system, time to reach the center, presence of disability, active disease, cutaneous and systemic manifestations, treatment and partner. Financial and work impacts were more frequent in those caring for JSLE and less so in those with a partner. Family relationships changed in 81 caregivers (25 [12.5%] worsened and 56 [28%] improved). No variables affecting spirituality were found. For caregivers without a partner, the social networks impact increased. Conclusion: The influence of sociodemographic factors can be devastating on families with children with a PRD. These data will help physicians to identify the areas with the greatest need for intervention to achieve comprehensive care for caregivers and their patients.

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Psychological Support Interventions for Healthcare Providers and Informal Caregivers during the COVID-19 Pandemic: A Systematic Review of the Literature

Background: During the COVID-19 pandemic, healthcare providers and informal caregivers were at an increased risk of adverse mental health effects. This systematic review provides a summary of the available evidence on the content and efficacy of the psychological support interventions in increasing mental health among healthcare providers and informal caregivers during the COVID-19 pandemic. Methods: PubMed, Google Scholar, PsychINFO, and Scopus databases were systematically searched for relevant articles, and the methodological quality of selected articles was assessed using the Quality Assessment Tool for Quantitative Studies. Results: A search of electronic databases identified five reports based on inclusion and exclusion criteria. All psychological support interventions for caregivers were delivered digitally. Despite the large heterogeneity of the selected studies, the findings support the efficacy of mental health interventions in reducing distress and burnout, while promoting self-efficacy and well-being in both healthcare providers and informal caregivers. Conclusion: Since mental health problems are expected to increase during, and as a result of, the COVID-19 pandemic, and digital tools might offer a range of mental health treatments to meet the unique and immediate needs of people, further research is needed to test the cost-effectiveness of digital psychological interventions.

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Psychological Distress and Social Support Availability in Different Family Caregivers of Latinas With Breast Cancer

Background: Latinas with breast cancer draw on a diverse range of family members for informal care. Latin cultures typically prescribe high levels of support and care for an ill family member that leave caregivers vulnerable to compromised well-being. Method: In this cross-sectional survey study, 258 family caregivers of Latinas with breast cancer completed reports of psychological distress, availability of social support, and acculturation. Results: Mothers who provide care to a daughter with breast cancer experience higher levels of psychological distress and report lower availability of informational support than most other types of family caregivers. Mothers' lower levels of acculturation may at least partially explain these reductions in well-being. Discussion: This study highlights the diverse range of family and fictive kin who participate in family caregiving for Latina breast cancer survivors. Spousal caregivers may not represent a unique population, whereas mothers as caregivers are indeed distinct for their higher distress levels.

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Psychological distress and burden of care among family caregivers of patients with mental illness in a neuropsychiatric outpatient clinic in Nigeria

Background: The wellbeing of family caregivers of mentally ill persons has often been ignored, despite that family caregivers can be predisposed to psychiatric morbidities and burden in caring for their mentally ill family members. This study examined the levels of psychological distress and burden of care experienced by family caregivers who care for their mentally ill relatives in Edo State, Nigeria. Methods: This study assessed psychological distress using the General Health Questionnaire (GHQ-12). Burden of care was measured using the 22-item Zarit Burden Interview (ZBI) questionnaire. Multiple linear regression was done to determine factors associated with burden of care and psychological distress, while factor analysis was used to determine the underlying forms of burden of care and psychological distress among participants. Results: Caregivers studied were relatives of patients diagnosed for depression (25.1%), substance use disorder (22.2%), schizophrenia (20.2%) and bipolar affective disorder (11.1%). Approximately 15% experienced no-to-mild burden, 51.3% mild-to-moderate burden and 34.0% high-or-severe burden. Nearly halve (49.0%) of participants experienced psychological distress. Severe rate of psychological distress was observed among subjects caring for patients with schizophrenia (60.7%), epilepsy (60.0%), substance use disorder (52.2%) and depression (49.0%). High burden of care was more preponderant among caregivers of relatives with mental retardation and epilepsy (50% each) and schizophrenia (39.3%). Having a higher educational qualification and being self-employed was a predictor of psychological distress. Gender of caregiver and the diagnosis schizophrenia among relatives of caregivers predisposed to burden of care. Three factors including social and emotional dysfunction, psychological distress and cognitive dysfunction were identified as components of psychological health through factor analysis. On the burden scale, six factor components were identified as: personal strain, role strain, intolerance, patients’ dependence, guilt and interference in personal life. Conclusion: There is a high prevalence of psychological morbidity and burden of care among family caregivers providing care for persons with mental illness.

 

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Psychoeducational Program for the Family Member Caregivers of People with Dementia to Reduce Perceived Burden and Increase Patient's Quality of Life: A Randomized Controlled Trial

Background: Dementia is one of the world's greatest public health issues. Most people with dementia receive home care, and family members are vulnerable to feeling burdened and depressed that reinforces the need for caregiver-driven services to mitigate these negative effects. Objective: The purpose of this research was to evaluate the effect of the psychoeducational program on burden and quality of life of family caregivers for people with dementia. Methods: This randomized controlled trial (RCT) was conducted on 60 family caregivers. Participants were randomly assigned to receive either the 8-session psychoeducational program (study group) or routine care only (control group). The demographic data of the caregivers and their patients, the burden of caregivers using Zarit Burden Interview (ZBI), and the quality of life of the patients using Quality of Life in Alzheimer Disease (QoL-AD) questionnaire were measured before and after the psychoeducational program and compared between the study group and the control group. Results: The results revealed that 80% of the family caregivers were female and 42% were daughters. The mean ± SD of the baseline burden was 61 ± 13.7 and 60.9 ± 10 in the study and the control group, respectively. ZBI burden score in the study group demonstrated a significant drop after the psychoeducational program compared to the control group. Logistic regression analysis showed that caregivers who received the psychoeducational program have OR (95% CI) of 14 (3.1-67.8) compared to those who did not receive the psychoeducational program. Conclusions: Psychoeducational program is effective in reducing the family caregivers' perceived burden. These findings need to be considered in developing comprehensive dementia care programs to well increase the strategies that help caregivers to deal with their patients.

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Providing cancer treatment and care to people living with cancer and dementia: challenges and research-based recommendations

A growing number of people live with cancer and dementia. Dementia creates a particular set of challenges in all aspects of cancer treatment and care, including diagnosis, decision-making, access to appointments, monitoring of signs and symptoms of cancer and side effects of cancer treatment, and management of self-care tasks. People with cancer and dementia often require extensive support from family carers, and those without family support face additional challenges. This article uses the emerging UK evidence base on cancer and dementia to discuss the challenges that arise when providing cancer treatment and care to people with dementia and their families, and to make research-based recommendations on how to improve service provision for that population.

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Profiles of eHealth Adoption in Persons with Multiple Sclerosis and Their Caregivers

Background: Persons with multiple sclerosis (pwMS) are often characterized as ideal adopters of new digital healthcare trends, but it is worth thinking about whether and which pwMS will be targeted and served by a particular eHealth service like a patient portal. With our study, we wanted to explore needs and barriers for subgroups of pwMS and their caregivers when interacting with eHealth services in care and daily living. Methods: This study comprises results from two surveys: one collecting data from pwMS and their relatives (as informal caregivers) and another one providing information on the opinions and attitudes of healthcare professionals (HCPs). Data were analyzed descriptively and via generalized linear models. Results: 185 pwMS, 25 informal caregivers, and 24 HCPs in the field of MS participated. Nine out of ten pwMS used information technology on a daily base. Individual impairments like in vision and cognition resulted in individual needs like the desire to actively monitor their disease course or communicate with their physician in person. HCPs reported that a complete medication overview, additional medication information, overview of future visits and a reminder of medication intake would be very helpful eHealth features for pwMS, while they themselves preferred features organizing and enriching future visits. Conclusions: A closer look at the various profiles of eHealth adoption in pwMS and their caregivers indicated that there is a broad and robust enthusiasm across several subgroups that does not exclude anyone in general, but constitutes specific areas of interest. For pwMS, the focus was on eHealth services that connect previously collected information and make them easily accessible and understandable.

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Professional home care and the objective care burden for family caregivers of persons with spinal cord injury: Cross sectional survey

Background: Spinal cord injury imposes high demands on family caregivers providing long-term care. Professional home care has been suggested for family caregivers’ relief. However, it is not clear whether professional home care can achieve the goal of relieving family caregivers. Objective: To quantify to what extent professional home care was used as a relief or replacement for family caregivers, using the case of care for persons with spinal cord injury in Switzerland. Design: Cross-sectional survey. Setting: Community setting in Switzerland. Participants: 717 family caregivers of persons with spinal cord injury living at home. Methods: Linear regression analyses were applied to investigate the relationship between care hours by family caregivers and the use of professional home care. Percentages of family caregivers that assisted in different tasks, and their time investment in the tasks, were contrasted between those with and without professional home care. Multiple logistic regression compared the likelihood of specific tasks being assisted by family caregivers dependent on whether professional home care was in place. The reasons given for not hiring more professional home care despite unmet needs were described with relative frequencies. Results: Adjusted for non-utilization, care hours of family caregivers had a positive, but insignificant, relationship with the hours of professional home care (Coef. = 0.21, 95% CI: –0.05–0.47). Assistance in activities of daily living was more frequent in family caregivers with professional home care. Eating and drinking assistance was provided by 47% of family caregivers with professional home care (versus 18% of those without professional home care). The most frequent task in instrumental activities of daily living was housekeeping (88% of family caregivers with professional home care and 83% of those without professional home care). After adjusting for characteristics of the caregivers and care recipients, significantly lower odds of assistance were found in washing feet (OR 0.39, 95% CI: 0.22–0.71), transferring to the toilet or bathtub (OR 0.53, 95% CI: 0.29–0.96), and climbing stairs (OR 0.26, 95% CI: 0.09–0.69). Higher odds of assistance were found in respiratory care (OR 2.22, 95% CI: 1.04–4.74) and bladder management (OR 1.99, 95% CI: 1.05–3.76) with professional home care in place. No significant difference was found in other tasks. Conclusion: Professional home care is a strong support to caregivers in high care demand situations, but it is not a replacement. The present study recommends further relief, empowerment, and acknowledgement for family caregivers. 

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Prioritizing Family Caregiving Research Across Diverse Settings to Support Our Aging Society

An editorial is presented on the Prioritizing Family Caregiving Research Across Diverse Settings to Support Aging Society. The article discusses that this has become abundantly clear during the evolving COVID-19 pandemic as family caregivers took on increasing responsibility for care amid the most challenging of circumstances; and research must not only continue but must also grow to better demonstrate how we can effectively support caregivers.

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Preparing for partnerships in cancer care: an explorative analysis of the role of family-based caregivers

Background: Family-based ‘informal’ caregivers are critical to enable sustainable cancer care that produces optimal health outcomes but also gives rise to psychological burdens on caregivers. Evidence of psychosocial support for caregivers does not currently address the impacts of their role in providing clinical and health-related care for their loved ones. The present study sought to address this gap including with those from priority populations. Methods: Qualitative data was collected using focus group and interview methods. We purposively sampled caregivers identified as having a high burden of responsibility for providing clinical care including those from ethnic minority backgrounds, parental caregivers and those living rurally. Transcripts were subject to thematic analysis utilising a team-based approach. Results: Family-based caregivers included spouses (11), parents (7), children (1), siblings (1). Ten participants were from ethnic minority backgrounds and five participants were from regional or rural locations. Four resulting inter-related themes were; 1) Dual burden of providing clinical care and managing personal emotional distress; 2) Navigating healthcare partnership dynamics; 3) Developing a caregiving skillset, and 4) Unique supportive needs and barriers to access. These data provide evidence of the unique challenge of providing clinical care as part of family-based caregiving for a loved one with cancer, and the absence of support for caregivers to take up this role. Conclusion: Our findings highlight the substantial contribution of family-based caregivers to the provision of cancer care in contemporary health systems. Inadequate support for caregivers is apparent with regard to their role in providing clinical aspects of care such as medication administration and management. Support programs to prepare caregivers to provide clinical care while building capacity to manage their stressors and emotions through this challenging period may be valuable towards sustainable, person-centred care.

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Preparedness for the death of an elderly family member: A possible protective factor for pre-loss grief in informal caregivers

Background: Pre-loss grief (PLG) has been identified as a robust risk factor for Prolonged Grief Disorder, which will be added to the DSM 5-TR. Therefore, identifying treatment targets to reduce PLG is warranted. "Preparedness" has been found to strongly predict PLG. The work is nascent and a consensus has not been reached about how best to assess for preparedness, and no reliable measure of this construct exists. Before examining the relationship between preparedness and PLG, an in depth understanding of how family members define preparedness is warranted. The purpose of this study was to develop a preliminary theoretical framework of preparedness for the loss. Methods: This was achieved through prospective semi-structured interviews with family members of Stage 4 Cancer (N = 16) and Advanced Dementia (N = 24) patients. Findings: The overarching theme related to preparedness for the loss was the need to reduce uncertainty, both before the person passes away (i.e., present certainty) and after the person passes away (i.e., future certainty). Factors associated with the need to establish certainty in the present included, religiosity and spirituality, good relationship quality with the person with the life limiting illness, having access to support, good communication with person with life limiting illness, and acceptance of the impending death. Certainty for the future included, knowing what to expect due to past experience of loss, having plans for life without the person, and social support. Conclusions: This study provides a preliminary framework of preparedness for family members of individuals with life limiting illness.

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Predictors of health service use by family caregivers of persons with multimorbidity

Background: Informal caregivers of patients with multiple chronic conditions are socially good, promoting the sustainability of a large part of home care provision. However, this very demanding activity causes health problems that increase their own need for health services. This study analyses the use of health services by informal carers, comparing it with the use made by the general population with similar characteristics. Methodology: Cross-sectional analytical study carried out in the Malaga-Valle Guadalhorce Primary Health Care District (Spain). Healthcare demand and perceived health were measured in the family caregivers, compared to the general population. Strobe Statement for observational studies has been used to strength the report of the results. Results: Final sample consisted of 314 family caregivers together with a subsample of 2.290 non-caregivers taken from data of the National Health Survey. This subsample was paired by gender with our sample. Formal caregivers make fewer annual visits to the health services, with respect to the general population, regardless of the perceived level of health. The difference of the means between those who perceive their health as very poor was 0.11 (95% CI: 0.01 to 0.20) consultations with the family doctor, 0.21 (95% CI: 0.15 to 0.26) consultations with medical specialists and 1.70 (95% CI: 1.52 to 1.87) emergency room attention. Three independent factors were identified that predispose to the increased use of health services: background of greater education achievement (OR 8.13, 95% CI: 1.30 to 50.68), non-cohabitation with the care recipient (OR 3.57, 95% CI: 1.16 to 11.11) and a more positive physical quality of life component (OR 1.06; 95% CI: 1.03 to 1.09). Discussion and Implications: Intrinsic components of the caregiver reveal their independent relationship with the provision of informal care and the use of health services. A broader vision is needed for the factors that influence the health of these caregivers to develop multipurpose interventions and improve the consistency and effectiveness of the health services offered to the caregiver. 

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Predictors of Caregiver Strain for Parents of Children with Autism Spectrum Disorder

Background: Parents of children with autism spectrum disorder (ASD) face higher levels of caregiver strain compared to parents of children with other disabilities. This study examined child clinical features that predict high levels of caregiver strain for 374 parents of children with ASD. Methods: Caregiver strain was measured using the Caregiver Strain Questionnaire (CGSQ) objective, subjective internalized, and subjective externalized subscales. Results: Confirmatory factor analysis indicated an acceptable fit for the original CGSQ three-factor solution. The strongest child predictors across CGSQ subscales were: disruptive behavior for objective strain, autism severity and disruptive behavior for subjective internalized strain, and oppositional behavior and hyperactivity for subjective externalized strain. Conclusions: Individualized interventions that attend to specific elements of parental strain may reduce strain and improve family wellbeing.

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Predictive model of psychological distress in family caregivers of patients with cancer: a cross-sectional study

Purpose: To examine a predictive theoretical model of psychological distress based on the following variables reflected on family caregivers of patients with cancer: the unmet supportive care needs, subjective caregiving burden, social support, and the positive aspects of caregiving. Methods: A cross-sectional descriptive study was conducted on a sample of 484 dyads of patients and their family caregivers. The caregivers completed structured questionnaires designed to measure psychological distress, unmet supportive care needs, subjective caregiving burden, positive aspects of caregiving, and social support. Patients' demographic variables and medical data were collected from a medical record review. We used a structural equation modeling to test the predictive theoretical model. Results: Path analysis results partially supported the proposed model with satisfactory fit indices. Specifically, family caregivers with an increasing number of unmet needs or a heavier caregiving burden were more likely to have more severe psychological distress. Bootstrapping results supported that the caregiving burden and social support were significant mediators. Greater unmet supportive care needs predicted higher psychological distress through increasing caregiving burden. Stronger social support predicted lower psychological distress through decreasing caregiving burden. Positive aspects of caregiving predicted lower caregiving burden through the increasing perceived social support, which in turn eliminated psychological distress. Conclusions: Unmet supportive care needs could cause psychological distress through increasing caregiving burden. The positive aspects of caregiving reduced caregiving burden through increasing social support, which subsequently alleviated psychological distress. Interventions that aim to satisfy supportive care needs, to reduce caregiving burden, and to strengthen social support ties may boost the mental health of family caregivers. 

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Predicting Quality of Life in Caregivers of Children with Cancer Within One Year Post-Diagnosis

Background: Pediatric cancer diagnosis and treatment can impact the psychological adjustment and quality of life (QOL) of caregivers. Objectives: We examined: (a) the relationship between caregiver QOL and family psychosocial risk, mental health symptoms and distress concurrently, shortly after diagnosis, and six months later; and (b) which of these factors at near diagnosis can predict caregiver QOL six months later, controlling for demographic and child clinical factors. Methods: Participants were 122 caregivers in two Canadian sites. Each completed the Caregiver Quality of Life Cancer Scale, the Psychosocial Assessment Tool (PAT), the Distress Thermometer (DT), and the Hospital Anxiety and Depression Scale (HADS) near diagnosis (T1) and six months later (T2). Clinical and demographic information were also collected. Results: Clinical and demographic factors were not associated with QOL at either T1 or T2. Concurrent analyses (within T1 and T2) indicated the PAT, DT, and anxiety symptoms as significant factors contributing to caregiver QOL. Longitudinally, only T1PAT and depression symptoms significantly predicted caregiver QOL at T2. Family psychosocial risk and caregiver depression symptoms near diagnosis predict caregiver QOL six months later. These results have important implications for supporting caregivers of children with cancer. Highlights: Childhood cancer diagnosis and treatment can negatively impact on the quality of life (QOL) of caregivers of the affected child. High family psychosocial risk and elevated caregiver depression symptoms near the child's cancer diagnosis can predict poor caregiver QOL six months later. Conclusions: Early assessment of family psychosocial risk and caregiver mental health, particularly depression symptoms, can guide psychological support and prevent poor caregiver QOL. Considering the close relationship between the wellbeing of the child and caregiver, addressing caregiver mental health needs can positively impact on the QOL of the caregiver and the child with cancer.

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Policy Opportunities to Support Family Caregivers Managing Pain in People with Dementia

The inherent challenges of an aging population and increased frailty include physical, social, psychological, and cognitive issues and associated complexities. With the growing population of persons living with dementia (PLWD), the need for continued support of family caregivers for these individuals also grows. Chronic pain is a common problem among older adults. The 2016 Global Burden of Disease Study reported pain as the leading cause of disability and disease burden globally (Vos et al., 2017). Pain management is a key aspect of the family caregiver role, but many family caregivers need education, support, and training to ensure that their loved ones' pain-related needs are addressed. As the demand for family caregiving increases, policymakers must acknowledge the expanding surrogacy role that caregivers play with PLWD and develop policies to address this need. This paper reviews the problem of pain in PLWD and the family caregiver's role. Two pieces of legislation—the Older Americans Act and the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act—are reviewed as opportunities for pain management nursing policy advocacy.

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Place4Carers: a multi-method participatory study to co-design, piloting, and transferring a novel psycho-social service for engaging family caregivers in remote rural settings

Background: Family caregivers are key actors in the ageing society. They are mediators between practitioners and patients and usually provide also essential daily services for the elders. However, till now, few services have been deployed to help caregivers in their care tasks as in improving their mental health which can experience sever burden due to caregiving duties. Objectives: The purpose of the study is to implement a community-based participatory research project to co-design an innovative organizational model of social services for family caregivers of elderly health consumers living in remote rural areas in Italy. Methods: This is a community-based participatory research project in the remote area of Vallecamonica involving four main phases. These included a quantitative analysis of caregiver needs, a scoping review on existing services for caregivers, co-design workshops with local stakeholders and caregivers to create a novel service the piloting and a first implementation of the service and the assessment of project transferability to other contexts. Results: As the hours dedicated to elder care increases, both objective and developmental caregiver's burden significantly increases. Conversely, higher levels of engagement were associated with lower physical and emotional burden, and caregiver engagement was positively correlated with their perceived self-efficacy in managing disruptive patient behaviours. Based on these preliminary results, four co-design workshops with caregivers were conducted and led to the definition of the SOS caregivers service, built on four pillars structured upon the previous need analysis: a citizens' management board, training courses, peer-to-peer meetings, and project and service information. We found that co-design is an effective means of creating new services for family caregivers, whose experiential knowledge proved to be a key resource for the project team in delivering and managing services. Less positively, the transferability analysis indicated that local municipalities remain reluctant to acknowledge caregivers' pivotal role. Conclusions: A dedicated support service for caregivers can ameliorate caregiving conditions and engagement levels. The service has resulted a successful co-productive initiative for a psycho-social intervention for family caregivers. For the future, we suggest that family caregiver should be considered an active partner in the process of designing novel psycho-social services and not just as recipients to enhance a better aging-in-place process. 

 

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Pilot test of a learned resourcefulness program for older family caregivers in Taiwan

Background: Learned resourcefulness, a theory-based education intervention, can be applied to provide strategies to improve the health status and reduce caregiver burden for older family caregivers. Methods: We developed a culturally relevant SOURCE program and designed a pilot study to its effect and feasibility for older family caregivers living in Taiwan. Using a quasi-experimental study with one-group, pre-test and post-test design, we recruited a convenience sample of 30 older family caregivers who received home-care services from a regional hospital in southern Taiwan. The older family caregivers participated in and completed the four-week SOURCE program. Effectiveness and feasibility data were collected after the completion of the program. Findings: Results indicated that the SOURCE program significantly improved caregiving burden (t = 3.05, p = .005) and revealed that the program was helpful and useful to older family caregivers. The next step will be to use the SOURCE program with more older family caregivers. 

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Perceived Help-Seeking Difficulty, Barriers, Delay, and Burden in Carers of People with Suspected Dementia

Background: Because of an often complicated and difficult-to-access care system, help-seeking for people with suspected dementia can be stressful. Difficulty in help-seeking may contribute to carer burden, in addition to other known stressors in dementia care. Objectives: This study examined the relationship between perceived help-seeking difficulty and carer burden, and the barriers contributing to perceived difficulty. Methods: We interviewed 110 carers accessing a community-based dementia assessment service for suspected dementia of a family member for their perceived difficulty, delays, and barriers in help-seeking, and carers burden in terms of role strain, self-criticism, and negative emotions. Results: Linear regression models showed that perceived help-seeking difficulty is associated with carer self-criticism, while carer role strain and negative emotions are associated with symptom severity of the person with dementia but not help-seeking difficulty. Inadequate knowledge about symptoms, service accessibility, and affordability together explained more than half of the variance in perceived help-seeking difficulty (Nagelkerke R2 = 0.56). Conclusion: Public awareness about symptoms, support in navigating service, and financial support may reduce perceived difficulty in help-seeking, which in turn may reduce carer self-criticism during the early course of illness.

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Perceived health, caregiver overload and perceived social support in family caregivers of patients with Alzheimer’s: Gender differences

Background: Perceived health in caregivers is related to caregiver burden, psychological well‐being and social support. Women perceive poorer health and are more likely than men to experience caregiver overload. Objectives: The objectives of this study were to analyse perceived health, perceived social support and caregiver overload in family caregivers of patients with Alzheimer's disease, as well as to study the effect of the perceived social support as a mediating variable between perceived health and caregiver overload was also analysed, taking into account the caregivers’ gender. Methods: A cross‐sectional descriptive design was used. The sample consisted of 255 family caregivers of individuals with Alzheimer's disease in the Almería Health District (Spain). This study was conducted from January to December 2015. The caregivers’ mean age was 55.35 years (SD = 12.35), with 85.5% (n = 218) being women and 14.5% (n = 37) being men. The following questionnaires were administered: Goldberg's General Health Questionnaire‐28; the Caregiver Strain Index, measuring caregiver overload; and the Duke‐UNC‐11 functional social support questionnaire. Results: Poor perceived health, high caregiver overload and high perceived social support were found. Differences in perceived health and perceived social support were significantly higher in women than in men. In women, perceived social support was a mediating variable between perceived health and family caregiver overload. This mediation was not observed in men. Conclusion: This study suggests that perceived social support influences the emotional well‐being and the caregiver overload of family caregivers of patients with Alzheimer's. However, its effect differs according to gender. It would, therefore, be necessary to have an in‐depth understanding of the variables determining these differences in family caregivers.

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Patients' and family members' perspectives on the benefits and working mechanisms of family nursing conversations in Dutch home healthcare

Objectives: The aim of this study is to propose a model of the benefits and working mechanisms of family nursing conversations in home healthcare from the perspective of participating patients and their family members. Background: Family nursing conversations in this study are intended to optimise family functioning, improve collaboration between family and professional caregivers and ultimately prevent or reduce overburden of family caregivers. Methods: In a qualitative grounded theory design, data were collected in 2017 using intensive interviewing with participants of family nursing conversations in home healthcare. A total of 26 participants (9 patients and 17 family members) from 11 families participated in a family nursing conversation and the study. Seven nurses who received extensive education in family nursing conversations conducted them as part of their daily practice. Interviews occurred 4–6 weeks after the family nursing conversation. Results: The model that was constructed in close collaboration with the families consists of three parts. The first part outlines working mechanisms of the conversation itself according to participants, i.e. structured and open communication about the care situation and the presence of all of the people who are involved. The second part consists of the benefits that participants experienced during and immediately after the conversation – an increased sense of overview and improved contact among the people involved – and the related working mechanisms. The last part consists of benefits that emerged in the weeks after the conversation – reduced caregiver burden and improved quality of care – and the related working mechanisms. Insight into the benefits and working mechanisms of family nursing conversations may assist healthcare professionals in their application of the intervention and provides directions for outcomes and processes to include in future studies.

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Patient and Family Engagement in Catheter-Associated Urinary Tract Infection (CAUTI) Prevention: A Systematic Review

Background: Catheter-associated urinary tract infections (CAUTIs) are detrimental to health and are largely preventable with adherence to CAUTI prevention guidelines. Patient and family engagement in CAUTI prevention is often encouraged in these guidelines; however, little is known about how this engagement is operationalized in practice. Methods: A systematic review was conducted to synthesize the content, format, and outcomes of interventions that engage patients and/or families in CAUTI prevention. Two reviewers independently screened records from four databases up to March 2021 and searched reference lists of final articles. Included articles were primary research, tested an intervention, involved indwelling urinary catheters, and described at least one patient and/or family engagement method. Articles were appraised for quality using the Downs and Black checklist. Findings: After 720 records were screened, 12 were included. Study quality ranged from good to poor, scoring lowest in internal validity. The most common formats of patient/family engagement were flyers/handouts (83.3%) and verbal education (58.3%). Common content areas were urinary catheter care and maintenance strategies. Most study outcomes (83.3%) measured CAUTI rates, and half measured patient/family-related outcomes. Improvements were seen in at least one outcome across all studies, but less than half (41.7%) showed statistically significant results. The researchers found that most interventions lacked sufficient detail on the content, delivery, and/or outcome measurement of patient/family engagement, which limits transferability. Conclusions: More high-quality, generalizable trials are warranted in this area. Future research should focus on integrating publicly available resources into practice that can be tested for comprehension and revised based on feedback from target audiences.

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Parkinson’s symptoms and caregiver affiliate stigma: A multinational study

Background and Objective: Research has documented the stigma that individuals with degenerative neurological diseases experience, but caregivers also experience stigma by association (i.e., affiliate stigma). In order to shed light on the stigma of caregivers of people with degenerative neurological diseases, the current study aimed to explore cross-cultural differences in the prevalence of Parkinson’s disease (PD) caregiver affiliate stigma, as well as the relationship between PD symptoms and caregiver affiliate stigma. Applications for Alzheimer’s disease are discussed. Methods: Survey data were collected in PD clinics at public, academic medical centers. Informal caregivers of an individual with PD from the US (n = 105) and from Mexico (n = 148) participated in the study. Caregivers completed a questionnaire that included the MDS Unified PD Rating Scale to describe the symptoms of the individual with PD, as well as the Affiliate Stigma Scale and demo-graphic information. Results: A series of multiple regressions was run to examine whether PD symptoms were associated with affiliate stigma and if these differed by country. These regressions suggested that different patterns of PD symptoms predicted affiliate stigma in each country. Stigma was higher in the US compared to Mexico, and the relationship between bowel/bladder symptoms and affiliate stigma was significantly stronger in the US. Conclusion: Symptoms of individuals with neurodegenerative diseases are related to affiliate stigma experienced by caregivers, and these relationships may differ cross-culturally. Negative public attitudes concerning bowl and bladder issues and the physical symptoms that accompany PD re-main a source of stigma for caregivers and families, particularly in the US. Interventions for caregivers of individuals with neurodegenerative diseases should include strategies for coping with stigma concerning bladder and bowel problems, as well as other physical and mental health issues. 

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Parents' and caregivers' satisfaction with community‐based rehabilitation (CBR) services for children with disability in east coast states in Peninsular Malaysia

Background: The Community‐Based Rehabilitation (CBR) services under the Malaysian Ministry of Women, Family and Community Development have provided two types of services for disabled children: centre‐based and home‐based care since 1984. Methods: A cross‐sectional study was conducted among parents and caregivers with children receiving treatment at CBRs on the east coast of Peninsular Malaysia, to determine the level of satisfaction with the services provided. Respondents were recruited via multi‐staged sampling, and simple randomisation at CBR level. Respondents self‐administered the Physical Therapy Satisfaction Questionnaire (PTSQ) and provided sociodemographic data. Results: A total of 297 respondents were recruited and all the questionnaires were returned complete, making the response rate 100%. Total satisfaction scores and factors influencing respondents’ satisfaction for both groups were analysed. The mean total satisfaction score for centre‐based and home‐based were 84.69 (SD = 10.01) and 75.30 (SD = 12.23; t = 7.160, p ≤ .001) respectively. Ninety‐eight per cent of centre‐based and 89% of home‐based respondents were satisfied with the current services. There were significantly mean differences in the satisfaction level of respondents of different states respectively (Kelantan mean 84.92 10.83, Terengganu mean 77.49 11.16 and Pahang mean 77.47 12.93, p ≤ .001). Factors associated with satisfaction were education (p = .002), occupation (p = <0.001), monthly income (p = .001) and source of income (p = .001). Conclusions: In conclusion, majority of parents and caregivers were satisfied with current services provided at CBR and satisfaction with services was dependent on CBR centre location and education and financial earning capacity.

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Parental Stress in Primary Caregivers of Children with Evidence of Congenital Zika Virus Infection in Northeastern Brazil

Background: Despite the well-known role of parents as caregivers, few studies have addressed their health outcomes related to the Zika virus epidemic. Methods: A cross-sectional study was carried out with 146 primary caregivers of children 15–26 months of age, with laboratory and/or clinical evidence of Zika infection between August and October 2017 in three Brazilian municipalities: João Pessoa and Campina Grande in the state of Paraíba and Fortaleza in the state of Ceará. Caregivers reported on their child's life and health, family circumstances and underwent screening for stress using the Parenting Stress Index-Short Form. Children were evaluated for developmental delays and clinical outcomes. Differences in the prevalence of risk factors between caregivers with high or clinically relevant stress and those with normal stress were evaluated. Results: Of the 146 participants, 13% (n = 19) were classified as having high or clinically relevant stress, all of them mothers. The two risk factors significantly and independently associated with high levels of stress, compared with individuals with normal stress levels, were "reporting difficulty in covering basic expenses" (adjusted OR 3.6 (95% CI 1.1–11.8; p = 0.034)) and "having a child with sleep problems" (adjusted OR 10.4 (95% CI 1.3–81.7; p = 0.026)). Conclusions: Some factors seem to contribute significantly more than others to the level of stress experienced by caregivers of children with evidence of Zika virus congenital infection. Interventions and preventive strategies should also target caregivers, who in turn will be able to respond to the unique characteristics of their child.

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Parental Feeding Concerns for Children With Autism Spectrum Disorder: A Family-Centered Analysis

Background: This study identifies and describes feeding concerns of parents of children with autism spectrum disorder (ASD) and examines the extent to which parents relate those concerns as having been addressed by therapists. Methods: Survey data were collected from 113 parents of children with ASD. Results: Of the parents surveyed, 68% described a past or present concern with feeding; 60% of those parents with concerns said a therapist had not addressed those concerns. Feeding concerns were more likely addressed when therapists shared parent's concerns. Specific types of concerns, such as those around food selectivity and food refusal, were more likely addressed than difficulties around mealtime. A gap is identified between parental report of feeding difficulties and parental report of professional services addressing feeding needs. Conclusion: This analysis presents an opportunity for occupational therapists in the area of feeding, particularly around identifying and addressing parental concerns.

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Parental caregiver burden and recovery of adolescent anorexia nervosa after multi-family therapy

Background: This study investigated whether parental caregiving burden changed during adjunct multi-family therapy of adolescent anorexia nervosa and eating disorders not otherwise specified (EDNOS) and whether caregiver burden at baseline and changes in caregiver burden during treatment were associated with treatment outcome. Methods: Twenty-four females, 13 to 16 years old, and their parents, participated in the study. Caregiver burden was measured with the Eating Disorders Symptom Impact Scale, by mothers (n = 23) and fathers (n = 22). Treatment outcome was measured by adolescent body mass index, level of global functioning and self-rated eating disorder symptoms by the Eating Disorders Examination Questionnaire 4.0. Results: All patient outcomes improved and overall caregiver burden decreased significantly during treatment. When broken down in aspects of caregiver burden the decrease in parental perceived isolation, was found to be associated with improvement of BMI and Children's Global Assessment Scale. When analyzing fathers and mothers separately, we found that maternal feelings of guilt and paternal perceived burden of dysregulated behaviors at base-line were correlated to treatment outcome. Conclusions: Future studies are needed to clarify the role of caregiver burden as a potential mediator of treatment results.

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Parent Perspectives on Educational and Psychosocial Intervention for Recent-Onset Type 1 Diabetes in Their School-Age Child: A Qualitative Study

Objective: The recent-onset period of type 1 diabetes (T1D) in early school-age children should include comprehensive, parent-focused T1D education as well as family-centered resources and support to help with adjustment. Here, we present parent/caregiver perspectives on specific areas of concern during the recent-onset period of T1D and their preferred timing for different topics related to T1D education. Methods: Parents/caregivers of 5- to 9-year-old children with T1D completed a card-sorting task and qualitative interview to describe ongoing areas of concern and preferred educational topics during the first year after T1D diagnosis. Results: Thirteen parents/caregivers (aged 35.1 ± 6.9 years) of a child with T1D (aged 8.9 ± 0.8 years, 11.3 ± 7.0 months post-diagnosis) completed the card-sorting task, and 11 completed the qualitative interview. Parents/caregivers endorsed four preferred stages of education: basic education and T1D survival skills during month 1 post-diagnosis, application and practice of T1D skills from months 1–3, access to community supports to cope with anxiety and distress from months 3–6, and support to build autonomy and manage burnout beyond month 6 post-diagnosis. Parents/caregivers endorsed four main themes for ongoing concerns: anxiety, autonomy, distress, and support. Conclusion: Parents endorsed four time points for education and psychosocial services within the first year of a T1D diagnosis. Parents/caregivers may benefit the most from psychosocial interventions 3–6 months post-diagnosis, once they have had sufficient time to develop basic T1D management skills. These findings support the need for regular parent psychosocial screening and access to scalable psychosocial interventions in the first year post-diagnosis of T1D.

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The Role of the Patients' Companion in the Transitional Care from the Open Heart Surgery ICU to the Cardiac Surgery Ward: A Qualitative Content Analysis

Background: The patients' companions can help improve transitional care as an important missing link, but their role is not clear. The aim of this study was to explore the role of the patients' companion in the transitional care from the open heart surgery intensive care unit (OH-ICU) to the cardiac surgery ward. Methods: This was a qualitative descriptive study using conventional content analysis that was conducted from September 2019 to February 2020 in Tehran, Iran. Purposeful sampling method with maximum variation was performed among the patients eligible for transfer to the cardiac surgery ward, their companions, nurses, and physicians in charge of transferring from the OH-ICU to the ward. 27 in-depth and semi-structured interviews were conducted with 25 participants, and data were analyzed using the Granheim and Lundman method. The data were managed using the MAXQDA software (version 10.0). Results: Based on our analysis, the theme "Dual role of the patients' companion" and its two categories, "Companion as a facilitator" and "Companion as an inhibitor", were extracted. Emotional support, satisfaction of basic needs, care arm, alarm bell, and communication bridge were the sub-categories of the first category, and Interfering with care and creation of tension were those of the second category. Conclusion: We concluded that the patients' companions can play an important role in transitional care, especially as emotional support and system assistants due to the structure of the health care system and Iranian cultural context. Therefore, it is suggested that the patients' companion should be considered as a member of the transition team and accompany them in this process by informing and supporting them.

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The role of family caregiver's sense of coherence and family adaptation determinants in predicting distress and caregiver burden in families of cancer patients

Background: Most cancer patients' families suffer from maladaptation which increases family distress and caregiving burden. This study was conducted to explore the relationship between these maladaptation indicators, and the sense of coherence (SOC) of family caregivers alongside other family resilience determines among family caregivers of cancer patients. Methods: A total of 104 family caregivers of cancer patients were included in this cross-sectional study. They answered three questionnaires to assess family resilience factors: Family Inventory of Resources for Management (FIRM), Family Crisis Oriented Personal Evaluation Scales (F-COPES), and SOC scale. In addition, family maladaptation factors were determined by two instruments, including Family Distress Index (FDI) and Caregiver Burden Inventory (CBI). Results: The results of this study showed that the FIRM and the SOC together were responsible for 35% and 43% of the variances in FDI and CBI scores, respectively (P < 0.001). "Reframing", the subscale of the F-COPES, significantly predicted the variances of FDI (β = −0.26, P = 0.01) and CBI scores (β = −0.21, P = 0.04). Moreover, "Mastery and health", the subscale of the FIRM, significantly predicted the variances of FDI (β = −0.38, P < 0.01) and CBI scores (β = −0.21, P = 0.02). Conclusions: Family caregiver's SOC alongside other family resilience determinants plays a significant role in alleviating family distress and caregiver burden. It is suggested that palliative care providers consider family caregivers' SOC in developing a psychological intervention plan to improve family resilience in families of cancer patients.

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The role of Connected Health technologies in supporting families affected by paediatric cancer: A systematic review

Objectives: Families impacted by paediatric cancer are met with logistical, financial and psychological impacts, with severe acute respiratory syndrome coronavirus two creating additional barriers and stressors for these families. Connected Health (CH) may facilitate cancer care. The objective of the present study was to systematically review CH for families/informal caregivers affected by paediatric cancer. Methods: Using search terms relating to: (1) paediatric cancer, (2) family/caregivers and (3) CH, the databases of PsycINFO, Pubmed, EMBASE and Web of Science were searched. Inclusion criteria included an evaluation of CH technologies for supportive care for families/caregivers affected by paediatric cancer at any stage of treatment or survivorship. Results: Sixteen studies met inclusion criteria. CH was primarily web‐based (n = 6), however smartphone applications (n = 5), telehealth (n = 2) and online groups (n = 3) were utilised. Intervention areas included psycho‐social (n = 6), health and information provision (n = 8) and palliative care (n = 2). Conclusions: While limited studies have evaluated the impact of CH on families living with paediatric cancer, emerging evidence suggests potential benefits. More evidenced‐based interventions are required. 

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The relationship between positive aspects of caring, anxiety and depression in the caregivers of cancer patients: The mediational role of burden

Objective: The aim of this study was to examine how the burden of caregivers of patients with an advanced oncological illness mediates the relationship between positive aspects of care, depression and anxiety. Methods: Quantitative study with a cross‐sectional design. One hundred informal adult caregivers of patients with advanced oncological illness who attended the pain and palliative care unit or the psychological unit at the Instituto de Cancerologia Clinica las Americas (Medellin, Colombia) completed self‐report assessments including positive aspects of care (PAC), burden and anxiety/depression measured using the HADS (Hospitalized Anxiety Depression Scale). The partial least squares Structural Equation Modelling (PLS‐SEM) approach was selected to validate the hypotheses of the study. Results: Most of the participants were women (86%), with a mean age of 46.52 years (SD=15.05). Most of the participants reported experiencing both PAC and anxiety. They also scored low for burden. PAC exerted a negative effect on Burden, whereas Burden contributed positively to Anxiety and Depression. The indirect impact of PAC on Anxiety and Depression was significant p < .00. Conclusions: Positive aspects of care in advanced cancer caregivers constitutes a protective factor against caregiver's burden, depression and anxiety. Health staff can promote caregivers' adaptation and wellbeing emphasizing these PAC.

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The reciprocal associations between caregiver burden, and mental health in primary caregivers of cancer patients: A longitudinal study: Family functioning, caregiver burden, and mental health

Objective: The vital role played by primary caregivers in caring for cancer patients is well‐recognized, but the caregiver burden and impact on family functioning to caregivers’ mental health is poorly understood. This study examined the prospective and reciprocal relationships between family functioning, caregiver burden, and mental health. We aimed to determine whether inferior family functioning and heavy caregiver burden act as risk factors for mental health, as consequences of mental health, or both. Methods: Participants were 187 primary caregivers of cancer patients. They completed questionnaires with standardized measures assessing family functioning, caregiver burden, and mental health. A quantitative longitudinal design and a cross‐lag model were used to test the reciprocal relationships between variables at three time points with 6‐month intervals during the first year of early‐stage cancer diagnosis and treatment. Results: Family functioning did not predict participants' future mental health, but their mental health state predicted future caregiver burden and family functioning. Caregiver burden also predicted participants' future mental health. There was a dynamic reciprocal relationship between caregiver burden and mental health over time. Conclusions: The findings of this study emphasize the adverse effects of caregiver burden and may contribute to shedding light on the distinct mechanisms that underlie the relationships between caregiver burden, family functioning, and mental health. Our findings indicate the necessity of developing interventions to reduce the burden of caregiving and to facilitate family functioning. They will provide direction for family‐centered nursing to meet primary caregivers' mental health needs in the care of cancer patients.

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The Protective Role of Social Support Sources and Types Against Depression in Caregivers: A Meta-Analysis

Background: The protective effects of social support for caregiver mental health are well documented, however the differential impact of support providers (partner, child, family, siblings, friends, professionals) and types (perceived, received) remain unclear. Methods: Observational data from 21 independent studies, involving a pooled sample of 2273 parents, stepparents and grandparents of children (aged ≤ 19) with autism spectrum disorder (ASD) were examined. Pearson's r, publication bias and heterogeneity were calculated using random effects modelling. Results: Significant associations were noted between lowered depressive symptoms and positive sources of support, regardless of support type. Conclusions: Parental mental health can be enhanced by strengthening close personal relationships alongside connections with formal support services. Longitudinal research is needed to explore support need and perceived helpfulness over time.

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The potential of transformative video design for improving caregiver’s wellbeing

The existing interventions for informal caregivers assist with managing health outcomes of the role burden. However, the deeper meaning-making needs of informal caregivers have been generally neglected. This paper reflects on the meaning-making needs of informal caregivers, through the theory of narrative identity, and proposes a new approach – the Transformative Video Design technique delivered via video storytelling. Transformative Video Design assists informal caregivers to re-create a cohesive caregiving story and incorporate it into the narrative identity. The technique is used as a stimulus for triggering the self-re-structure within the narrative identity and facilitating role transformation.

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Outcomes valued by people living with dementia and their carers: A qualitative systematic review with a qualitative synthesis

Background: Growing numbers of interventions are being developed to support families living with dementia, but the extent to which they address the issues of most importance to people living with dementia and their carers is unclear. The aim of this review is to synthesise the best available qualitative evidence on the outcomes valued by (a) people living with dementia and (b) their carers, both for themselves and each other. This review is a part of a wider project aiming to improve post diagnostic support for people living with dementia and their carers. Method: We will use thematic synthesis methodology. Studies from 1990 onwards will be eligible if they include qualitative data on the views of people living with dementia or their carers on valued outcomes or the lived experience of dementia. Databases to be searched include MEDLINE, CINAHL, PsycInfo and Social Sciences Premium Collection, in addition to systematically gathered grey literature. Rayyan QCRI software will be used to manage the screening processes and NVivo software will be used to manage data extraction and analysis. The review will also critically evaluate the extent to which international recommendations address the areas of importance to people living with dementia and their families. Results: The results of this review will be presented at the conference. Conclusion: The findings will be of relevance to researchers, policy makers, and providers and commissioners of dementia services.

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Organising Support for Carers of Stroke Survivors (OSCARSS): a cluster randomised controlled trial with economic evaluation

Objective: Investigated clinical effectiveness and cost-effectiveness of a person-centred intervention for informal carers/caregivers of stroke survivors. Design: Pragmatic cluster randomised controlled trial (cRCT) with economic and process evaluation. Setting: Clusters were services, from a UK voluntary sector specialist provider, delivering support primarily in the homes of stroke survivors and informal carers. Participants: Adult carers in participating clusters were referred to the study by cluster staff following initial support contact. Intervention was the Carer Support Needs Assessment Tool for Stroke: a staff-facilitated, carer-led approach to help identify, prioritise and address the specific support needs of carers. It required at least one face-to-face support contact dedicated to carers, with reviews as required. Control was usual care, which included carer support (unstructured and variable). Outcome measures: Participants provided study entry and self-reported outcome data by postal questionnaires, 3 and 6 months after first contact by cluster staff. Primary outcome: 3-month caregiver strain (Family Appraisal of Caregiving Questionnaire, FACQ). Secondary outcomes: FACQ subscales of caregiver distress and positive appraisals of caregiving, mood (Hospital Anxiety and Depression Scale) and satisfaction with stroke services (Pound). The economic evaluation included self-reported healthcare utilisation, intervention costs and EQ-5D-5L. Randomisation and masking: Clusters were recruited before randomisation to intervention or control, with stratification for size of service. Cluster staff could not be masked as training was required for participation. Carer research participants provided self-reported outcome data unaware of allocation; they consented to follow-up data collection only. Results: Between 1 February 2017 and 31 July 2018, 35 randomised clusters (18 intervention; 17 control) recruited 414 cRCT carers (208 intervention; 206 control). Study entry characteristics were well balanced. Primary outcome measure: intention-to-treat analysis for 84% retained participants (175 intervention; 174 control) found mean (SD) FACQ carer strain at 3 months to be 3.11 (0.87) in the control group compared with 3.03 (0.90) in the intervention group, adjusted mean difference of −0.04 (95% CI −0.20 to 0.13). Secondary outcomes had similarly small differences and tight CIs. Sensitivity analyses suggested robust findings. Intervention fidelity was not achieved. Intervention-related group costs were marginally higher with no additional health benefit observed on EQ-5D-5L. No adverse events were related to the intervention. Conclusions: The intervention was not fully implemented in this pragmatic trial. As delivered, it conferred no clinical benefits and is unlikely to be cost-effective compared with usual care from a stroke specialist provider organisation. It remains unclear how best to support carers of stroke survivors. To overcome the implementation challenges of person-centred care in carers’ research and service development, staff training and organisational support would need to be enhanced.Trial registration numberISRCTN58414120.

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Online health communities, contributions to caregivers and resilience of older adults

Objectives: The aim of this paper is twofold. Firstly, to investigate the potential benefits of online health communities (OHCs) for informal caregivers by conducting a systematic literature review. Secondly, to identify the relationship between the potential benefits of OHCs and resilience factors of older adults. Methods & Findings: Performing a thematic analysis, we identified the potential benefits of OHCs for informal caregivers of older adults, including two salient themes: (a) caregivers sharing and receiving social support and (b) self and moral empowerment of caregivers. Then, we uncovered how these potential benefits can support resilience of older adults. Our findings show that sharing and receiving of social support by informal caregivers, and self and moral empowerment of informal caregivers in OHCs, can support four resilience factors among older adults, including self‐care, independence, altruism and external connections. Conclusions: This review enables a better understanding of OHCs and Gerontology, and our outcomes also challenge the way healthcare and aged‐care service providers view caregivers and older adults. Furthermore, the identified gap and opportunities would provide avenues for further research in OHCs.

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Nursing interventions improve preparedness, competence, reward and burden of family caregivers in end-of-life care at home

Informal family caregivers play a crucial role in end-of-life care, especially in the community. However, family caregivers are known to have high needs and psychological morbidity, including fatigue, sleep problems, depression, anxiety and burnout. Palliative care aims to provide psychosocial support to patients and families facing terminal illness. Interventions that aim to support family caregivers are increasing and have been reported in the literature. Implications for practice and research: Nurses should provide individualised interventions to support family caregivers in end-of-life-care at home. Multicomponent interventions have the potential to address the complex needs of family caregivers. Future research needs to establish effective interventions and their related components.

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Nursing Home Care Intervention Post Stroke (SHARE) 1 year effect on the burden of family caregivers for older adults in Brazil: A randomized controlled trial

Objectives: The purpose of this study is to evaluate the effect of home‐care nursing intervention on the burden of family caregivers for older adults surviving a stroke. A randomised clinical trial blinded for outcome evaluation. Methods: Forty‐eight family caregivers of older adults surviving a stroke took part in the study. The intervention group (IG) received three home visits by nurses in 1 month after hospital discharge for guidance on the disease and care activities for the elderly people. The control group (CG) relied on the service network that had access. The Caregiver Burden Scale was applied to assess the burden outcome 1 week, 60 days and 1 year after hospital discharge. Results: The caregivers of the intervention and CGs had no difference regarding baseline data. There was an interaction effect between the CG and the IG in the isolation domain (p = 0.037) and in the emotional involvement domain (p = 0.003) over time. Conclusions: These findings provide support for strengthening a care line for the elderly people after a stroke, with adequate discharge planning, indicating the importance of integrating care network services such as primary care, home care and hospital care with a view to achieving an effective care transition. It is also necessary to construct a specific instrument to evaluate other outcomes, such as the knowledge and learning of caregivers in relation to the care activities taught. 

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A Nurse-Led Education Program for Pneumoconiosis Caregivers at the Community Level

Background: Pneumoconiosis is an irreversible chronic disease. With functional limitations and an inability to work, pneumoconiosis patients require support from family caregivers. However, the needs of pneumoconiosis caregivers have been neglected. Objectives & Methods: This study aimed to evaluate the effectiveness of a nurse-led education program, which involved four weekly 90-min workshops led by an experienced nurse and guided by Orem’s self-care deficit theory. A single-group, repeated-measure study design was adopted. Caregivers’ mental health (Hospital Anxiety and Depression Scale, HADS, four single items for stress, worriedness, tiredness, and insufficient support), caregiving burdens (caregiving burden scale, CBS), and unmet direct support and enabling needs (Carer Support Needs Assessment Tool, CSNAT) were measured at the baseline (T0), immediately after (T1), and one month after intervention (T2); 49, 41, and 28 female participants completed the T0, T1, and T2 measurements. Mean age was 65.9 years old (SD 10.08) with a range between 37 and 85 years old. Results: The program improved the caregivers’ mental wellbeing, and reduced their caregiving burdens and their unmet support and enabling needs, both immediately (T1) and one-month after the intervention (T2). In particular, the intervention improved the caregivers’ mental wellbeing significantly, specifically depression symptoms, stress, and tiredness immediately after the intervention; and reduced most of their unmet support needs and unmet enabling needs one-month after the intervention. Conclusions: This was the first nurse-led program for pneumoconiosis caregivers and should serve as a foundation for further studies to test the program with robust designs.

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Non-use of community health-care services - An exploratory cross-sectional study among family care-givers for older, home-dwelling persons with dementia

Background: Community health-care services for older, home-dwelling persons with dementia tend to be underutilised. Family care-givers provide substantial care, and they often arrange for and co-ordinate health-care services on behalf of persons with dementia. Objectives: The aim of this study was to examine family care-givers' knowledge of unused services and their self-reported reasons for non-use of such services. We gathered cross-sectional survey data from 430 family care-givers of older persons with dementia in Northern Norway. Methods: Multinomial logistic regression analysis was used to identify predictors of family care-givers' knowledge of unused services. An open-ended question regarding reasons for non-use of services was analysed by thematic text analysis. Findings: Characteristics of family care-givers (e.g. education level) and factors related to the care-giving circumstances (e.g. negative impact of care-giving) predicted family care-givers' knowledge of unused services. Reasons for non-use of services were multifaceted and complex, and were related to attributes of the person with dementia and/or the family care-giver (e.g. reluctance to use services) and/or the health-care services (e.g. low quality). Although services were unused, several family care-givers indicated substantial needs for the services. Conclusions: Strategies aimed at addressing the non-use of services should emphasise individuals' and families' needs and the adaptation of information about available services and their benefits for both care recipients and family care-givers. A relationship-centred care approach is thus recommended in dementia care. 

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Needs of patients with dementia and their caregivers in primary care: lessons learned from the Alzheimer plan of Quebec

Background: Persons living with dementia have various health and social care needs and expectations, some which are not fully met by health providers, including primary care clinicians. The Quebec Alzheimer plan, implemented in 2014, aimed to cover these needs, but there is no research on the effect this plan had on the needs and expectations of persons living with dementia. The objective of this study is to identify persons living with dementia and caregivers’ met and unmet needs and to describe their experience. Methods: This is a sequential mixed methods explanatory design: Phase 1: cross-sectional study to describe the met and unmet health and social care needs of community-dwelling persons living with dementia using Camberwell Assessment of Need of the Elderly and Carers’ Assessment for Dementia tools. Phase 2: qualitative descriptive study to explore and understand the experiences of persons living with dementia and caregivers with the use of social and healthcare services, using semi-structured interviews. Data from phase 1 was analyzed with descriptive statistics, and from phase 2, with inductive thematic analysis. Results from phases 1 and 2 were compared, contrasted and interpreted together. Results: The mean total number of needs reported by the patients was 5.03 (4.48 and 0.55 met and unmet needs, respectively). Caregivers had 0.52 met needs (3.16 unmet needs). The main needs for both were memory, physical health, eyesight/hearing/communication, medication, looking after home, money/budgeting. Three categories were mentioned by the participants: Persons living with dementia and caregiver’s attitude towards memory decline, their perception of community health services and of the family medicine practice. Conclusions: Our study confirms the findings of other studies on the most common unmet needs of the patients and caregivers that are met partially or not at all. In addition, the participants were satisfied with access to care, and medical services in primary practices, being confident in their family. Our results indicate persons living with dementia and their caregivers need a contact person, a clear explanation of their dementia diagnosis, a care plan, written information on available services, and support for the caregivers.

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Needs of Informal Caregivers of Patients With Head and Neck Cancer: A Systematic Review

Background: Informal caregivers for patients with head and neck cancer perform complex caregiving tasks on a daily basis, but caregivers' needs are rarely acknowledged or addressed in current healthcare practice. Methods: A thorough review of CINAHL®, MEDLINE®/PubMed®, and PsycINFO® was conducted by the authors. 266 manuscripts were identified, with no time limit. The search was conducted in November2019. In total, 19 articles were included in the review. Throughout the disease trajectory, caregivers' psychological and emotional support needs are consistently high, whereas information needs diminish overtime. Implications for practice: Informal caregivers are imperative in supplementing the continuing care demands of people living with head and neck cancer; however, they are at risk for experiencing caregiving burden. Skill training and psychological support interventions are needed for educating and supporting caregivers.

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Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review

Background: In the present study we conduct a systematic review to evaluate the needs and experience of people with pediatric multiple sclerosis (MS) and their caregivers. Methods: The literature search was conducted across 10 academic databases, adhering to PRISMA-P guidelines. Quality appraisal was conducted using the mixed method appraisal test for individual studies, and GRADE-CERQual to establish overall confidence of findings. Results were analyzed using a process of narrative synthesis. Results: We identified 26 studies which included 2253 children/adolescents with MS (CAMS) and 1608 caregivers. MS was reported to negatively impact experiences for CAMS in domains such as of school performance, social relationships, mental health, and overall physical functioning. Specifically, fatigue and social support were reported as the most important barriers and facilitators for CAMS, respectively. In terms of caregiver experience, negative impacts were reported on social functioning, mental health, and quality of life. Additionally, lack of awareness concerning MS was one of the biggest challenges reported. Caregivers expressed needs for psychological and social support. Conclusions: This study provides the first evidence regarding the needs and experiences of CAMS and their caregivers. Findings can be used to address policy gaps for supporting families affected by pediatric MS.

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The need for psychological, caregiver‐centered intervention in the time of COVID‐19

We focus attention on problems that are affecting the informal caregivers of patients with neurodegenerative disorders in the time of COVID‐19. The pandemic is increasing difficulties in the management of the frailest people and their isolation is actually even more tangible than it was in the past. The social restrictions and the lockdown of many activities are putting the system of care provided by informal caregivers on the edge of collapse. We incite the scientific community to face these concerns and provide clinicians clear indications for assisting and supporting caregivers in the care of their relatives during this period. We suggest that e‐health programs could become the ideal “environment” to favor the continuity of care for patients with neurodegenerative conditions and guarantee the required support to their caregivers, both directly in terms of psychological management and indirectly for helping them in disease management.

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Navigating through incontinence: A qualitative systematic review and meta-aggregation of the experiences of family caregivers

Background: Community dwelling older adults who are care dependent are highly affected by incontinence, resulting in substantial informal caregiver burden. Understanding the experiences of these caregivers is needed to develop supportive programs that reduce caregiver burden and rates of institutionalization for care recipients. Objectives: This systematic review aimed to critically appraise and synthesize the qualitative literature on the perceptions, experiences, and consequences of informal caregivers managing incontinence in community dwelling older adults. Design: A qualitative evidence synthesis using meta-aggregation. Data sources: CINAHL, Embase, Ovid Medline, PsycInfo, Scopus, and ProQuest Dissertations and Theses. Review methods: A comprehensive search was conducted to identify qualitative studies of all designs, published in English from January 1970 to November 2020, reporting on the experiences of unpaid adult family members or friends providing care at home to an adult aged 60 or older with urinary and/or fecal incontinence. Screening, data extraction, and quality appraisal were conducted independently by two reviewers, with disagreements resolved by consensus with all team members. Joanna Briggs Institute (JBI) processes were used to assess study quality, and the dependability and credibility of both study findings and synthesized findings. All articles included met predetermined criteria. Results: Database searches yielded 1165 references, of which 117 full-text documents were screened. Seven articles of moderate to high methodological quality met eligibility criteria and were included. Studies occurred in nine countries with 134 participants who were mostly female spouses of the care recipient. From these eligible studies, 49 findings were extracted with 35 equivocal or credible findings eligible for meta-aggregation. Findings were synthesized into the following four categories: 1) emotional responses, 2) physical, financial, and social consequences, 3) family roles and caregiver support, and 4) management and coping strategies. Conclusions: Informal caregivers experience many physical, psychosocial, and financial challenges in caring for an older family member with incontinence. Educational and supportive programs for managing incontinence should be multi-component and tailored to meet the individual needs of informal caregivers. Future research should incorporate strategies to cope with emotional responses and offer practical strategies for managing incontinence. 

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A national survey of caregiver’s own experiences and perceptions of U.S. health care system when addressing their health and caring for an older adult

Background: Caregiving is a demanding role that can negatively impact a person’s health and well-being. As such, adequate access to health care is important for maintaining the family caregiver’s own personal health. Objectives: The aims of this study were to identify if family caregivers of older adults had more difficulty accessing health care services than non-caregivers and to identify if family caregivers felt access to additional services would be beneficial for maintaining their own personal health care. Methods: National survey of 3026 US adults aged 30 to 89 years old. Participants were grouped based on self-reported caregiving experience. Survey asked about access to care, importance of health care services and whether caregivers had support needed. Descriptive statistics were used to compare caregiver and non-caregiver’s responses. Multivariate logistic regression model assessed correlates of caregivers not having the support they needed. Results: Caregivers were older, female, lower educational attainment, lower income, had more multiple chronic health conditions and health condition or disability that impacts their daily life. Caregivers reported difficulty accessing mental health services, dental services, medications, and supportive services at home. Caregivers felt it was important to have care coordinator, long-term relationship with primary care provider and access to house calls, telemedicine, and medications delivered to the home. Age, ethnicity, chronic conditions and confidence in finances were factors influencing whether caregiver had support needed to provide assistance to older care recipient. Conclusion: Caregivers provide needed support and care to older adults while also needing support for themselves. Health care services delivered in the home were highly desirable to caregivers and could help them maintain their health and well-being.

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Namaste care delivered by caregivers of community‐dwelling older adults with moderate to advanced dementia: A mixed methods study protocol

Aim: The aim of this study is to adapt and evaluate the feasibility, acceptability, and preliminary effectiveness of a multisensory, psychosocial intervention called Namaste Care delivered by family and friend caregivers of community‐dwelling older adults with moderate to advanced dementia. Design: A multiphase mixed methods design combining quantitative and qualitative methods will be used. Methods: This study is composed of two phases. Phase 1 is guided by a qualitative description approach. Small group workshop sessions with 8–10 caregivers of community‐dwelling older adults with moderate to advanced dementia will be conducted to adapt Namaste Care. In Phase 2, 10–20 caregivers will receive training and implement the adapted Namaste Care approach at home. A one group, before‐after design will be used to evaluate feasibility, acceptability and preliminary effectiveness of the approach over 3 months. Feasibility will be assessed using quantitative measures and acceptability will be explored using qualitative methods. Outcomes to evaluate preliminary effectiveness include quality of life (QoL), positive perceptions of caregiving, self‐efficacy, and caregiver burden. Discussion: There are currently few skill‐building interventions that can be delivered by caregivers of people with moderate to advanced dementia at home. Caregivers should be involved in developing programs to enhance program relevance. This research will be the first to explore the feasibility of implementing the Namaste Care approach at home by caregivers. Impact: Study results will provide important information about the feasibility and preliminary effects of an adapted form of Namaste Care. This program has the potential to improve the QoL of caregivers and may prevent hospitalization or long‐term care placement of older persons with moderate to advanced dementia. The revised Namaste Care program supports building the skills of caregivers so that their needs and the needs of older persons with dementia living at home are being addressed.

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"My quiet times": Themes of sleep health among people caring for a family member with dementia

Background: This research explores and represents the sleep of people caring for a family member with cognitive impairment or dementia. Methods: A thematic analysis was applied to the open-ended comments from 526 carers from a postal survey concerning sleep, health and caregiving. Themes are presented within a framework of five dimensions of sleep health. Findings: Themes of sleep duration included striking a balance between 'achieving the hours' whilst also sacrificing sleep to manage responsibilities. Themes of sleep efficiency included symptoms of insomnia ('losing sleep over the situation') and 'sleeping on guard' in case night-time support was required. Timing of sleep was themed as either restricted to 'when the one I care for sleeps' or salvaged as a luxury 'quiet time'. Levels of alertness were represented within themes of being 'tired all of the time' whilst also in a state of 'high alert'. Finally, overall sleep satisfaction ranged from themes concerning 'sleeping fine at the moment' to sleep being 'a big problem'. Conclusion: The sleep experience of family carers is unique and often includes tensions between roles and responsibilities and their own need for sleep and well-being. Findings have implications for community support and healthcare interventions for families affected by dementia.

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"My backpack is so heavy": Experiences of Latino caregivers of family with early‐onset Alzheimer's

Background/Objectives: While it is well‐known that caregiving can have adverse effects on the physical and mental health of informal caregivers and their families, caregivers of those with early‐onset Alzheimer's Disease (EOAD) may have distinct needs. Little is written about the experiences of Latino caregivers of family members with EOAD, especially inherited forms. This study's objective was to explore the experiences and needs of Latino caregivers of persons with EOAD. Methods: Five focus group discussions (FGDs) were conducted among 27 informal caregivers of Latinos with EOAD who were recruited through an AD clinic in Los Angeles. Results: The stress of caregiving was compounded by other pressures and worries, such as taking care of young children, providing financially for family, caregivers' own co‐morbidities, and contemplating their own risk of inheriting EOAD. Resources for monolingual Spanish speakers were scarce. Participants had two primary unmet needs: information and support services. Participants lacked information about how to provide appropriate care, which heightened fears. Difficulty in obtaining a diagnosis from physicians who were uninformed about EOAD was also common. Recommended topics for informational campaigns included how‐to videos on caring for a loved one but also topics related to self‐care for caregivers. Conclusions: Our results underscore the need to tailor programs for caregivers of family members with EOAD. Educational campaigns could help to dispel myths and misconceptions, reduce stigma associated with EOAD, and encourage more people to seek timely care. Additional psychosocial support, such as support groups, could build solidarity and self‐efficacy. Better access to dual‐language information and support could encourage early help‐seeking but also improve caregivers' quality of life as they manage long‐term caregiving responsibilities.

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The multiplicity of caregiving burden: a qualitative analysis of families with prolonged disorders of consciousness

Objective: To understand the multiple and sometimes conflicting roles substitute decision makers (SDMs) of individuals in a vegetative state (VS), minimally conscious state (MCS), or with locked-in syndrome (LIS) perform while caring for a loved one and the competing priorities derived from these roles. Methods: We conducted semi-structured qualitative interviews using a constructive-grounded theory design. Twelve SDMs, who were also family members for 11 patients, were interviewed at two time points (except one) for a total of 21 in-depth interviews. Results: Participants described that caregiving is often the central role which they identify as their top priority and around which they coordinate and to some extent subordinate their other roles. In addition to caregiving, they participated in a wide variety of roles, which were sometimes in conflict, as they became caregivers for a loved one with chronic and complex needs. SDMs described the caregiver role as complex and intense that lead to physical, emotional, social, and economic burdens. Conclusion: SDMs report high levels of burdens in caring for a person with a prolonged disorder of consciousness. Lack of health system support that recognized the broader context of SDMs lives, including their multiple competing priorities, was a major contributing factor.

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Multi-family therapy for bulimia nervosa in adolescence: a pilot study in a community eating disorder service

Background: Multi-family therapy for Bulimia Nervosa (MFT-BN) was developed in response to the modest outcomes following both Family Therapy and Cognitive Behavior Therapy for adolescents with BN. BN impacts individuals and their family members with high levels of carer stress. MFT-BN targets barriers to treatment including low motivation to change, hostility and criticism, negative affect alongside emotion dysregulation and common comorbidities. MFT-BN enhances treatment, providing a community of support and acquisition of emotional regulation and interpersonal skills. Methods: The study describes the clinical characteristics of the group of participants to whom MFT-BN is offered and presents the outcomes of families who have participated in it. Findings: Prior to MFT-BN, adolescents who received it were more likely to have self-harmed and had elevated levels of eating disordered cognitions than those who did not receive MFT-BN. Following MFT-BN, parents report decreases in the negative experiences of caregiving and in their own symptoms of anxiety. Adolescents report reductions in anxiety and depression alongside improvement in emotion regulation. Improvements in symptoms of eating disorders include reductions in eating disorder cognitions and modest reductions in binge and purge symptoms after 14 weeks of treatment. Adolescents who participated in MFT-BN were less likely to drop out of outpatient treatment.

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Moderators and mediators of emotion regulation therapy for psychologically distressed caregivers of cancer patients: secondary analyses from a randomized controlled trial

Background: Being an informal caregiver (IC) of a cancer patient is often associated with psychological distress. We have recently, in a randomized controlled trial (RCT), demonstrated efficacy of Emotion Regulation Therapy for ICs (ERT-C), evidenced as lower levels of psychological distress. Such efficacy demonstration is important, but a crucial step in improving treatments for the IC population is the identification of moderators (i.e., for whom the treatment works) and mediators (i.e., the drivers of the detected effect). Material and methods: In a sample of 65 psychologically distressed ICs (combining participants who received immediate and delayed treatment in the RCT); we investigated age, gender, and homework completion as moderators of treatment outcome. Proposed mediators were derived from the ERT model and included mindfulness, emotion regulation dysfunction, decentering, and cognitive reappraisal. Results and conclusions: The strongest moderation effect was found for homework completion, predicting improvements on psychological distress. Correlational mediation analyses generally supported the ERT model. However, temporal precedence was only established for the association between decentering and worry, where a bidirectional relation was revealed. Homework thus emerged as an important aspect of ERT-C and, albeit a bidirectional relationship, changes in decentering may precede changes in worry. Future trials should ensure the robustness of these results, hone the specificity of process measures, and further investigate the causal timeline of change. 

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A Mobile Health Platform for Self-Management of Pediatric Cystic Fibrosis: Qualitative Study of Adaptation to Stakeholder Needs and Integration in Clinical Settings

Background: Cystic fibrosis (CF) is an inherited chronic condition that requires extensive daily care and quarterly clinic visits with a multidisciplinary care team. The limited exchange of information outside of the quarterly clinic visits impedes optimal disease self-management, patient engagement, and shared decision making. Objective: The aim of this study is to adapt a mobile health (mHealth) app originally developed in Sweden to the needs of patients, families, and health care providers in a CF center in the United States and to test it as a platform for sharing patient-generated health data with the CF health care team. Methods: Focus groups with health care providers of patients with CF, adolescents with CF, and caregivers of children with CF were conducted to determine what modifications were necessary. Focus group data were analyzed using a thematic analysis, and emergent themes were ranked according to desirability and technical feasibility. The mHealth platform was then modified to meet the identified needs and preferences, and the flow of patient-generated health data to a secure Research Electronic Data Capture database was tested. Protocols for data management and clinical follow-up were also developed. Results: A total of 5 focus groups with 21 participants were conducted. Recommended modifications pertained to all functionalities of the mHealth platform, including tracking of symptoms, treatments, and activities of daily care; creating and organizing medication lists and setting up reminders; generating reports for the health care team; language and presentation; sharing and privacy; and settings and accounts. Overall, health care providers recommended changes to align the mHealth platform with US standards of care, people with CF and their caregivers requested more tracking functionalities, and both groups suggested the inclusion of a mental health tracker as well as more detailed response options and precise language. Beta testers of the modified platform reported issues related to translatability to US environment and various bugs. Conclusions: This study demonstrated the importance of identifying the needs and preferences of target users and stakeholders before adopting existing mHealth solutions. All relevant perspectives, including those of clinicians, patients, and caregivers, should be thoroughly considered to meet both end users’ needs and evidence-based practice recommendations.

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Mobile geriatric team for older people: A qualitative descriptive study of relatives' views on what creates senses of security and quality of care

Background: Multimorbidity tends to increase with age. Providing care that is individualized and that focuses on the whole person rather than on separate health issues is a challenge for healthcare, due to a lack of coordination and information exchange. In the future, relatives will need to take even more responsibility for their next of kin. Objectives: The aim of this study was to explore relatives' views of aspects that create a sense of security and feelings of quality of care related to acute mobile geriatric care for older people in their own homes. Methods: Data were collected using semi-structured interviews analysed using content analysis. Findings: This study is reported in accordance with the COREQ checklist. Interpersonal factors such as straightforward communication, empathy, having time for the person, a focus on the person, and having a few known caregivers who are easy to contact, rather than more clinical factors, have been identified as central to creating a sense of security and quality of care.

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A mixed-methods feasibility study of a goal-focused manualised intervention to support people with dementia to stay living independently at home with support from family carers: NIDUS (New Interventions for Independence in Dementia Study) Family

Objectives: To examine the feasibility and acceptability of NIDUS-Family, a 6–8 session manualised, individually tailored, modular intervention supporting independence at home for people with dementia; and explore participants' and facilitators' experiences of the intervention. Methods: In this single group multi-site feasibility study, trained, supervised non-clinically qualified graduates (facilitators) delivered NIDUS-Family to family carer and people living with dementia dyads. We recruited participants from GP practices and memory services in London and Bradford. We completed quantitative outcomes pre- and post-intervention; and conducted qualitative interviews with participants and facilitators. Our pre-specified main outcomes were proportion of potential participants approached who agreed to participate, intervention adherence and acceptability to family carers, and facilitator fidelity to the manual. Results: We recruited 16 dyads (57% of those approached); 12 (75%) completed the intervention. Of 12 participants rating intervention acceptability, 9 (75%) agreed or strongly agreed that it had helped; 2 (18%) neither agreed nor disagreed and 1 (8%) disagreed. Mean facilitator fidelity was high (81.5%). Dyads set on average 3.9 goals; these most commonly related to getting out and about and increasing activity/hobby participation (n = 10); carer wellbeing (n = 6), managing physical complaints (n = 6); meal preparation/cooking (n = 5); and reducing irritability, frustration or aggression (n = 5). Almost all secondary outcomes changed in a direction indicating improvement. In our qualitative analysis we identified three overarching themes; relationships facilitate change, goal-focused versus manualised approach and balancing the needs of carers and people with dementia. Conclusions: NIDUS-Family was feasible and acceptable to participants. Following refinements, testing in a pragmatic trial is underway.

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A mixed methods systematic review of informal caregivers' experiences of fall risk among community‐dwelling elders with dementia

Background: Evidence on effective fall prevention strategies for community‐dwelling elders with dementia is limited, although these elders are at high risk of falling. Informal caregivers may play an essential role in managing fall risk for elders with dementia. Thus, understanding caregiver's experiences is critically important. Objectives: This systematic review aims to (a) identify caregivers' perceptual, emotional and behavioural responses to fall risk in elders with dementia and (b) examine the outcomes and effects of caregiver behavioural responses. Methods: A mixed methods systematic review of 10 databases (PubMed, PsycINFO, CINAHL, Social Service Abstracts, Social Work Abstracts, EMBASE, Web of Science, Scopus, Cochrane Library and TRIP Medical Database) was conducted. We searched English language, peer‐review articles (January 1, 1985–March 20, 2020) that met the predefined inclusion/exclusion criteria. Study quality was assessed using the Mixed Methods Appraisal Tool. Data were analysed using thematic synthesis techniques. Findings: Twenty‐nine studies were included. Six analytic themes were generated concerning caregivers' perceptual, emotional and behavioural responses: (a) fear of the negative health consequences of falls; (b) limited insights into factors contributing to falls; (c) varying expectations of managing fall risk; (d) multi‐level efforts; (e) struggling with responsibilities; and (f) inaction and withdrawal. The findings about the outcomes and effects of caregivers' behaviours were synthesised into three analytic themes: (a) multi‐faceted outcomes; (b) uncertain and inconsistent evidence; and (c) unclear associations. Conclusions: The study generated new insights in understanding caregivers' responses of fall risk among community‐dwelling elders with dementia and identified significant gaps in examining the impact of caregivers' responses and what shapes these responses. Investment in understanding caregivers' perspectives will inform future interventions and policies to reduce negative outcomes for elders, caregivers and care systems.

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Mindfulness- and compassion-based interventions for family carers of older adults: A scoping review

Objectives: To provide an overview of the current use of mindfulness- and compassion-based interventions with family carers of older adults, to aid primary healthcare practitioners in their decision-making around referral to wider healthcare services. The study was guided by four research questions: what interventions are currently used; whom they are used with; why they are used; and their evidence-base in terms of acceptability and effectiveness. Methods: A scoping study using the methodological frameworks of Arksey and O'Malley and Levac et al. Searches of electronic databases (MEDLINE, CINHAL, PsycINFO), reference lists of relevant articles, and journal websites were conducted in June 2019. Search terms were developed via an iterative process, and included medical subject headings and keywords relating to mindfulness and compassion, interventions, and family carers. Articles were included if: written in English; published in a peer-reviewed journal; employed quantitative, qualitative, or mixed-method research designs; and described a mindfulness- and/or compassion-based intervention for adults identified as a family carer of an older adult. Data from included studies were charted (using a purposively-designed template), and descriptively analysed in relation to the study's research questions. Findings: From 2005 unique records, 32 primary studies were included. Seven types of mindfulness- or compassion-based interventions were broadly described within studies, including: mindfulness-based stress reduction (n = 13), mindfulness-based cognitive therapy (n = 3), meditation interventions (n = 9), acceptance and commitment therapy (n = 1), dialectical behaviour therapy (n = 1), compassion-focused therapy (n = 1), and study-specific interventions involving a combination of mindfulness and/or compassion (n = 4). Studies sampled a total of n = 991 participants and targeted six family carer sub-groups: dementia (n = 23), cancer (n = 5), amyotrophic lateral sclerosis (n = 1), chronic conditions (n = 1), cirrhosis (n = 1), and Parkinson's disease (n = 1). A variety of health outcomes were assessed across interventions, with the most common being depression (n = 26), anxiety (n = 15), burden (n = 15), quality of life (n = 14), and stress (n = 11). The evidence-base for each intervention was insufficient and too heterogeneous to make clear statements regarding effectiveness. However, based on these findings, interventions show some potential utility in supporting family carers in their role and, given a collective rate of attrition (18%), may do so in a way that is acceptable to carers. Conclusions: This scoping study highlighted the nascent use of mindfulness- and compassion-based interventions with family carers of older adults, and provided important substantive detail about what each intervention entails. Based on current evidence, a number of implications for research and practice are presented.

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mHealth-Supported Delivery of an Evidence-Based Family Home-Visiting Intervention in Sierra Leone: Protocol for a Pilot Randomized Controlled Trial

Background: Past trauma and exposure to violence have been related to poor emotion regulation and household violence, which can have persistent mental health effects across generations. The Family Strengthening Intervention for Early Childhood Development (FSI-ECD/called Sugira Muryango in Rwanda) is an evidence-based behavioral home-visiting intervention to promote caregiver mental health, positive parenting practices, and early childhood development among families facing adversity. In Sierra Leone and other lower- and middle-income countries, mobile health (mHealth) technology has the potential to improve health care delivery and health outcomes. Objective: This study aims to (1) apply a user-centered design to develop and test mHealth tools to improve supervision and fidelity monitoring of community health workers (CHWs) delivering the FSI-ECD and (2) conduct a pilot randomized controlled trial of the FSI-ECD to assess feasibility, acceptability, and preliminary effects on caregiver mental health, emotion regulation, caregiving behaviors, and family violence in high-risk families with children aged 6-36 months in comparison with control families receiving standard care. Methods: We will recruit and enroll CHWs, supervisors, and families with a child aged 6-36 months from community health clinics in Sierra Leone. CHWs and supervisors will participate in 1 problem analysis focus group and 2 user interface/user experience cycles to provide feedback on mHealth tool prototypes. Families will be randomized to mHealth-supported FSI-ECD or standard maternal and child health services. We will collect quantitative data on caregiver mental health, emotion regulation, caregiving behaviors, and family functioning at baseline, postintervention, and 3-month follow up. We will use a mixed methods approach to explore feasibility and acceptability of mHealth tools and the FSI-ECD. Mixed effects linear modeling will assess FSI-ECD effects on caregiver outcomes. Cost-effectiveness analysis will estimate costs across FSI-ECD versus standard care. Results: Funding for this study was received from the National Institutes of Mental Health on August 17, 2020. Institutional Review Board approval was received on September 4, 2020. Data collection is projected to begin on December 15, 2020. Conclusions: This study will provide important data on the feasibility, acceptability, and preliminary efficacy of mHealth-supported delivery of an evidence-based family home-visiting intervention in a postconflict LMIC. Trial Registration: ClinicalTrials.gov NCT04481399; https://clinicaltrials.gov/ct2/show/NCT04481399. International Registered Report Identifier (IRRID): PRR1-10.2196/25443

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Mediating effects of family functioning on the relationship between care burden and family quality of life of caregivers of children with intellectual disabilities in Mongolia

Background: Intellectual disabilities are characterized by constant and complex needs for care that place a heavy burden on the families of affected individuals and affect their overall quality of life. We evaluated the mediating effects of family functioning on the relationship between care burden and the family quality of life of caregivers of children with intellectual disabilities in Mongolia. Methods: Data were collected from a sample of 150 caregivers of children with intellectual disabilities from October 2017 to November 2017. Multiple linear regression analyses were performed to examine the mediating effects of family functioning. Results: Family functioning had a partial mediating effect (β =.702, p <.001) on the relationship between care burden and family quality of life. Conclusion: Family functioning should be considered when developing a social support intervention to improve family quality of life among caregivers of children with intellectual disabilities.

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Meaning through caregiving: A qualitative study of the experiences of informal carers

Background: This article reports the findings of a qualitative investigation of the way people find meaning through caregiving. Methods: It draws on the results of in-depth interviews with 37 informal carers and 11 stakeholders in Nottinghamshire, the United Kingdom. Findings: For most respondents caregiving involved looking after family members-for example, husband or wife, father or mother, young or adult children and mother-in-law. The meaning that respondents found through caregiving motivated them to cope with the difficulties associated with looking after a person in need. This research found that most informal carers operate with long-standing, gender-based understandings of their role, creating a potential risk that using gender-neutral terminology when referring to family members may obscure the subjective values that carers attach to informal caregiving and lead to role confusion. Moreover, although informal carers typically feel obliged to take care of family members in need and may value this role, they often require additional support from the state to reduce the pressures associated with caregiving and to enable them to continue to lead a meaningful life both within and beyond their caring role. 

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The meaning of autonomy when living with dementia: A Q-method investigation

Background and Aims: Sensitivity to the rights of people with dementia is a key principle cited in the World Health Organisation's global action plan on dementia. Some critics question whether rights-based approaches embody loose and ill-defined ideas incapable of bringing about meaningful change. Exercising the right to autonomy is considered a core problem for people living with dementia. The tradition of individual sovereignty dominates ideas about autonomy, although the person as an individual is not a cross-culturally universal concept. This study explored the viewpoints of people with dementia and family carers regarding the meaning of autonomy with a view to informing rights-based practice. Methods: Twenty participants, people living with dementia and family carers, each conducted a Q-sort of statements regarding the meaning of autonomy. A by-person factor analysis was used to identify patterns in how the range of statements about autonomy were ranked. Results: Three factors emerged: retaining independence and self-expression, accepting dependence but being included and opportunity for connection. There was some agreement across these different views regarding the importance of being given time to think before making decisions and being kept active. Conclusions: This study highlights the need for a person-centred approach to supporting people with dementia to claim their rights and the importance of adopting a stance of curiosity and critical thinking in rights-based training and professional practice. The findings suggest a variety of meaningful stories of autonomy and the possibility of further developing existing rights-based frameworks for dementia care.

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Long-term effects of telephone-based cognitive-behavioral intervention for family caregivers of people with dementia: Findings at 3-year follow-up

Background: Long-term outcomes are of particular importance in evaluating interventions for family caregivers of people with dementia (PwD). So far, evidence for long-term effects (>6 months postintervention) is limited to four interventions. Objective: We examined the long-term effects of Tele.TAnDem, a telephone-based cognitive-behavioral therapy (CBT) intervention, on a variety of outcomes at 3-year follow-up, the longest follow-up of any intervention study for caregivers of PwD (without continuous support). Methods: Caregivers of PwD were randomly assigned to receive Tele.TAnDem consisting of 12 sessions over 6 months (intervention group [IG]) or usual care (control group [CG]). At 3-year follow-up (i.e., 2.5 years postintervention), 29 caregivers in the IG and 22 caregivers in the CG were still caring at home for a PwD. Results: Caregivers in the IG reported significantly lower caregiver burden and higher quality of life regarding social relationships. Conclusions: Tele.TAnDem is successful in buffering detrimental effects of caregiving on caregiver burden and social relationships in the long term. The small- to medium-sized effects lie in the range of effect sizes reported in the few previous investigations. The findings add to the scant evidence that interventions yielding long-term outcomes have to date mostly been multicomponent interventions based on CBT principles with structured techniques and at least seven sessions over more than 2 months. 

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Long-Term Effect of Receiving a Family Strengths-Oriented Intervention on Family Cancer Caregiver Stress, Anxiety, and Depression Symptoms: A Longitudinal Quasi-Experimental Study

Objectives: The aim of this longitudinal study was to evaluate the long-term effects of providing a therapeutic conversation intervention, based on Family Systems Nursing, to family caregivers of a close relative with advanced cancer over the period before and during bereavement. Background: To prevent adverse outcomes, caregivers need ongoing support that begins pre-loss and extends into the post-loss period. Methods: This study employed a one-group pre-test, post-test quasi-experimental design. Twenty-four caregivers participated in two intervention trials conducted over a 42-month period, receiving two intervention sessions pre-loss (Trial 1) and one intervention session post-loss (Trial 2). Results: Significant decreases in anxiety and stress were noted over the three post-loss assessments. The final post-loss stress outcome was significantly lower than the first pre-loss score. For the depression score, there was not a significant change over time within the pre- or post-loss period. Conclusions: The findings provide evidence of decreasing anxiety and stress following the implementation of an extended family nursing intervention for bereaved family caregivers.

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Longitudinal family caregiving experiences in heart failure: Secondary qualitative analysis of interviews

Background: Considering the potential impacts of family caregivers on heart failure management and the costs of healthcare, health professionals need to pay attention to the challenges faced by family caregivers. Methods: This study longitudinally explored the caregiving experiences of family caregivers of persons with heart failure. Serial interview scripts collected from 53 family caregivers were analyzed using a content analysis method. Findings: The following themes emerged: (1) accumulating knowledge and skills for caregiving; (2) losing a sense of control; (3) balancing an unstable life; (4) constructing illness memory; (5) centering the patient in daily life; (6) accepting the loss of a family member; (7) coping with grief by drawing on social support; (8) facing financial responsibility; and (9) rethinking hospice care. Conclusions: Family caregivers experience concern about unpredictable caregiving years, disease's fluctuating symptoms and poor prognosis. More educational opportunities, financial counseling programs, and palliative care consultations should be provided.

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Live hospice discharge: Experiences of families, and hospice staff

Objective: To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge. Methods: A mixed-method integration of hospice 2013-17 admission/discharge data, 5 family interviews, hospice discipline-specific focus groups (3 aides, 2 nurses, 1 administrator interview) and a discipline-combined focus group (all 6 staff; each staff participant engaged in two data collection experiences). Results: 5648 hospice admissions occurred between 2013-17; 795 patients experienced live discharge. The most prevalent admitting diagnosis was cancer, the most prevalent live discharge diagnosis was dementia. Family caregiver themes were Attitude and experience with hospice, Discharge experience, and Continued need/desire for hospice following discharge. Staff themes were Discharge circumstances, Regulatory guidelines, and Changing practice to meet regulatory guidelines. Conclusion: Involuntary live hospice discharge precludes patient-centered care due to policy constraints, especially for those with noncancer diagnoses. Families and staff noted the paradox of beneficial hospice care, yet this care resulted in ineligibility for continued hospice services. Practice Implications: Transparent, patient-family-staff communication (including CNAs) facilitates hospice live discharge planning. Hospice service eligibility policy changes are needed. 

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"A Little Bit of Their Souls": Investigating the Concept of Dignity for People Living With Dementia Using Caregivers' Blogs

Background: Dignity is an important component of quality of life and a core value of family nursing care. Few studies have explored dignity in community-dwelling adults with dementia. Methods: This study used blogs written by caregivers to explore the concept of dignity in dementia caregiving. A template analysis of blogs written by family caregivers of people with dementia was conducted. Findings: Four themes were defined a priori in relation to Jacelon's model of dignity: perceived value from others, self in relation to others, behavioral respect, and self-value. Caregivers wrote about experiences that related to each of the four a priori themes from Jacelon's model. In addition, the theme of dignity by proxy was derived from the analysis. Conclusions: By understanding the concept of dignity in the context of dementia family caregiving, interventions and services can be developed to improve family quality of life through dignifying, family-focused care.

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“Like filling a lottery ticket with quite high stakes”: a qualitative study exploring mothers’ needs and perceptions of state-provided financial support for a child with a long-term illness in Finland

Background: A child’s long-term illness or disability is always a serious matter that impacts the whole family. Costs related to an illness can substantially affect a family’s financial situation. To date, there is little research on how parents experience available support for financial assistance. Surveys in Finland have found that families of children with long-term illnesses and disabilities could experience financial struggle and perceive the state provided financial support system as too complex. Objectives: This article aimed to explore how caregivers of children with long-term illnesses perceived their financial situation, need for financial support and experienced its provision by the state in the Helsinki greater region. Methods: Convenience sampling was used. Participants were contacted through peer-support groups on Facebook. Eleven mothers of children with varying long-term illnesses and disabilities residing in the Helsinki greater region were interviewed using in-depth interviews. Recordings of the interviews were transcribed and analysed using framework analysis. An analytical framework was built to label the dataset, which was then charted. Lastly, themes were formed through descriptive analysis. Results: The main findings showed how the burden of caring for a child with a long-term illness or disability causes fatigue, which affects a family’s financial situation holistically. This affected both employment and financial management, but also receiving information about and applying for the state provided allowances. Mental resources were further depleted by seeking information and applying for allowances. This contributed to a vicious cycle between parental fatigue and financial struggle. Participants found the allocation of funds inequitable across the country. Finally, participants thought the allowance was insufficient in compensating for time spent caring for their child’s illness and did not consider their mental strain. Conclusions: Even in a welfare state such as Finland, caregivers of children with long-term illnesses are at risk of poverty and struggle with the organization of state provided financial support. Policies should be designed to ensure equity across the country and consider how the parental fatigue should be addressed. The study has implications for achieving sustainable development goals on wellbeing and reducing poverty.

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Life under lockdown and social restrictions - the experiences of people living with dementia and their carers during the COVID-19 pandemic in England

Background: The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them. Methods: We recruited and remotely interviewed 30 people living with dementia in their own homes and 31 family carers, via video or telephone call in mid-2020. Data were transcribed and analysed using thematic analysis. Results: People living with dementia often had a basic understanding of COVID-19 restrictions but could have difficulty translating this into personalised risk-appraisal of their own actions. Managing COVID-19 risks facing people living with dementia at home was largely done by family carers, exemplified by changes to living arrangements, which could strain or sustain caring relationships. Well-established familial caring relationships contributed to the wellbeing of the person living with dementia and their carer, as well as keeping to simple routines that included leaving the home for exercise and stimulation. People living with dementia reported some negative psychological and cognitive effects due to the imposed restrictions, such as increased apathy, irritability, or anxiety, which were fuelled by lack of social engagement. Conclusions: Structuring routine (remote) social interactions where possible could increase social engagement and improve wellbeing for people living with dementia, especially those with limited familial support in a post-COVID-19 context. As some care relationships had been restructured to manage COVID-19 risks, additional carer strain may emerge as a result of the impact on the independence of the person living with dementia and come to the attention of professionals in health and care services. People living with dementia and their carers highlighted the importance of maintaining or adapting routines which may be useful learning for professionals, although additional support may be necessary for those who are impacted by more severe or worsening symptoms of dementia.

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Life is different now – impacts of eating disorders on Carers in New Zealand: a qualitative study

Background: Eating disorders are widely recognized as serious illnesses, with complex psychological and physiological comorbidities. Affected individuals face a protracted and challenging treatment journey which, particularly for children and adolescents, requires significant input from family members as carers. This study investigated the perspectives and experiences of those caring for family members with an eating disorder diagnosis. Method: Participants were carers of affected individuals with an eating disorder, and were recruited from an online survey, subsequently consenting to a semi-structured qualitative interview. Inductive thematic analysis was undertaken to identify themes. Results: Most participants in the sample were parents of affected individuals. Significant and ongoing psychological and emotional impacts were identified across the sample. The diagnosis, treatment journey and overall impact of the carer role created a situation captured by the over-arching theme ‘life is different now’. Impacts profoundly influenced relationships and were felt across all aspects of life by carers, affected individuals and other family members. Heightened worry and vigilance experienced by carers continued beyond improvement or recovery. Conclusions: This research highlighted challenging and often exhausting impacts felt by carers due to their pivotal role in eating disorder treatment. Inadequate support for most carers in this sample has clear implications for families as well as service and funding providers. Further research should more fully investigate carer experience with different eating disorders to explore the type of support necessary to build capacity and resilience to reduce carer burden.

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Levels of stress and coping strategies in family caregivers who treat schizophrenic patients with risk of violent behavior

Background: Violent behavior is one of the most common symptoms of people who have schizophrenia. Caring for family members who have schizophrenia can be a stressor for other family members. The stressors can be stressful for the caregiver. Family caregivers require coping strategies to overcome the stressors. This study aims to determine the relationship between stress levels and coping strategies of family caregivers who treat schizophrenic patients with a risk of violent behavior. Design and Methods: The research design engaged cross-sectional with the purposive sampling technique by involving 87 caregiver families who who treat schizophrenic patients. The data was collected by using the Perceived Stress Scale (PSS) and Ways of Coping (WOC) questionnaires. This study was analyzed by employing the Chi-Square test to determine the relationship between stress levels and coping strategies in the caregiver family. Results: This study shows that stress levels are not significantly associated with coping strategies in family caregivers. Conclusion: Good supports from health and social service professionals are required to help family caregivers cope with their stressors well.

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Lessons learned from the implementation of a video health coaching technology intervention to improve self‐care of family caregivers of adults with heart failure

Background: Individuals with heart failure (HF) typically live in the community and are cared for at home by family caregivers. These caregivers often lack supportive services and the time to access those services when available. Technology can play a role in conveniently bringing needed support to these caregivers. Objectives: The purpose of this article is to describe the implementation of a virtual health coaching intervention with caregivers of HF patients (“Virtual Caregiver Coach for You”—ViCCY). Methods: A randomized controlled trial is currently in progress to test the efficacy of the intervention to improve self‐care. In this trial, 250 caregivers will be randomly assigned to receive health information via a tablet computer (hereafter, tablet) plus 10 live health coaching sessions delivered virtually (intervention group; n = 125) or health information via a tablet only (control group; n = 125). Each tablet has specific health information websites preloaded. To inform others embarking on similar technology projects, here we highlight the technology challenges encountered with the first 15 caregivers who received the ViCCY intervention and the solutions used to overcome those challenges. Results: Several adaptations to the implementation of ViCCY were needed to address hardware, software, and network connectivity challenges. Even with a well‐designed research implementation plan, it is important to re‐examine strategies at every step to solve implementation barriers and maximize fidelity to the intervention. Conclusion: Researcher and interventionist flexibility in adapting to new strategies is essential when implementing a technology‐based virtual health coaching intervention.

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Learning to change: Transformative outcomes of programmes and activities for family caregivers of people with dementia in Taiwan

Background: This study explored the transformative outcomes of programmes and activities for family caregivers of people with dementia in Taiwan. Methods: Transformative learning theory was used to examine the relationship between participation and positive outcomes. A group of nonparticipants was included to provide a complete picture of the transformative learning process. In this qualitative study, 18 participants were interviewed with audio recording, and the data were transcribed verbatim. A thematic analysis was performed to determine the themes and subthemes in the results. Findings: The results revealed that participation in programmes and activities was not the single factor leading to transformative outcomes; family support, self-adjustment, the ability to cope, and coordinated intervention in accordance with individual preferences and needs also facilitated transformative outcomes for nonparticipants. Conclusions: Further studies should focus on interventions modifying factors of perceived caregiver burden, for instance, by providing psychological support to informal caregivers, offering programmes and activities targeting the management of neuropsychiatric symptoms in patients with dementia, and supporting quality of life. 

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Latent by-product of substance use: Burden of care

Introduction: Substance use affects it’s user and also risks the health of the caregivers. Objectives: Identify persons at risk of developing substance use disorder, assess the burden borne by the caregivers and development of psychiatric illness. Methods: Clinical assessment based on DSM-V criteria was performed for SUD diagnosis. Data was recorded using Substance use risk profile scale (SURPs) on the patient and the caregivers were evaluated using M.I.N.I. International Neuropsychiatric Interview (M.I.N.I) and caregiver’s strain index (CSI). Results: 81 participants-96% were male, mean age 32.4 years, 53.1% married, 72.8% employed and 52% lived in joint family system). The substance use ascertained were alcohol 24.7%, benzodiazepines 21%, cannabis 34.6%, opioid 30.9% and others 4.8%. 50% had substance use lasting 2-9 years. 50.6% reported starting as a recreation and the perpetuating factor for 49.4%. was emotional distress. 44% quit due to family pressure. On SURP, 85.2% demonstrated anxiety sensitivity, 96.3% were hopeful, 66% sensation seeking and 77% were impulsive. Caregiver mean age was 37.8 years, with two-third being parents and spouses. The burden reported was sleep disturbance 59.3%, inconvenience (61.7%) physical strain 46.9%, confining 50.6%, family adjustment 76.5%, plan changes 65.4%, emotional adjustment 88.9%, behavioral adjustment 74.1%, financial strain 80.2%, work adjustment 46.9%, 71.6% felt overwhelmed and 67.9% were upset about the changes from former self. Major depressive disorder was identified in 51.9% of the caregivers. Conclusions: SURP identified personality features linked with risk of developing substance use disorder. The study also provided evidence for significant burden on caregivers and an increased likelihood to develop a psychiatric disorder.

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“Neither a wife nor a widow”: an interpretative phenomenological analysis of the experiences of female family caregivers in disorders of consciousness

Background: Disorders of consciousness (DoC) disrupt close relationships. This study investigated the experience of a DoC in the family. Methods: Four main themes were identified from semi-structured interviews with nine females and analysed using Interpretative Phenomenological Analysis (IPA): Findings: (1) Loss without a name, (2) Relationship without a title, (3) Symbiotic relating and (4) Frozen futures. Participants’ accounts showed complex losses and relationship transformations that were challenging to cope with. Participants embodied the person and experienced reductions in rehabilitation and social visits as personally abandoning and led to strong advocacy with professionals. The uncertainty created by the DoC meant participants lived in the present moment and struggled to make plans for their future. Conclusions: Psychological support to demonstrate a sensitivity and validation of this unique complex loss, a framework for naming the loss, provision of education about the condition and enhancing coping with a chronic situation are needed.

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Keeping Hope Possible Toolkit: The Development and Evaluation of a Psychosocial Intervention for Parents of Infants, Children and Adolescents with Life Limiting and Life Threatening Illnesses

Background: Globally, many infants and children are diagnosed with illnesses that impose limitations on their well-being and life course trajectory. Children’s care becomes the central focus of family life. Inadequate support for parents is detrimental to their well-being and management of their child’s care and support needs. Methods: The second phase of this evaluation study followed a quasi-experimental crossover design to test a theory-based psychosocial intervention, the Keeping Hope Possible Toolkit. Fifty-nine participants were randomly assigned to one of two sequence groups, with measures of hope, feelings of control, distress, and uncertainty completed pre- and post-intervention, and at a three-month follow-up. Qualitative interviews sought to assess participant experiences with the intervention, along with acceptability and feasibility. Results: Significant influence on parental distress was found, and the qualitative findings reveal benefits of the intervention for parental wellbeing. The intervention effectively offered practical and emotional support to diverse family caregivers. Conclusions: The evidence-informed KHP intervention can be used by healthcare providers to intervene with family caregivers to support their dynamic emotions including hope, need to live in the moment and remember self, and social preferences. In doing so, parents’ critical caregiving activities can be sustained and their child’s health and wellbeing optimized.

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The Journey of Recovery: Caregivers' Perspectives From a Hip Fracture Telerehabilitation Clinical Trial

Objective: The objective was to explore family caregivers' perspectives of the recovery process of older adults with hip fracture and describe experiences from caregivers who: (1) used the online intervention, or (2) received home-based care provided by the Andalusian Public Health Care System. Methods: This was an exploratory secondary study with informal family caregivers who had an older adult family member with hip fracture enrolled in a novel telerehabilitation (telerehab) clinical trial. Forty-four caregivers of older adults with hip fracture were interviewed at 6 to 9 months after their family member's hip fracture. Results: Caregivers shared concerns of family members' survival and recovery; they recounted increased stress and anxiety due to the uncertainty of new tasks associated with providing care and the impact on their lifestyle. Although most caregivers were satisfied with the health care received, they made suggestions for better organization of hospital discharge and requests for home support. The main reasons why caregivers and their family member chose the telerehab program were to enhance recovery after fracture, gain knowledge for managing at home, and because of the convenience of completing the exercises at home. There were more family caregivers in the control group who expressed a high level of stress and anxiety, and they also requested more social and health services compared with caregivers whose family member received telerehab. Conclusion: Family caregivers are an essential component of recovery after hip fracture by providing emotional and physical support. However, future clinical interventions should evaluate person-centered interventions to mitigate possible stress and anxiety experienced by family caregivers. Impact Family caregivers' perspectives are necessary in the co-design of management strategies for older adults after hip fracture.

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“It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma

Background: Sarcomas are a group of rare and aggressive cancers, which develop in bones and connective tissue throughout the body. Sarcomas account for only 1–2% of all cancers worldwide; however, mortality rates for sarcoma are high with approximately two in four sarcoma patients dying following a diagnosis. Delays in diagnosis, poor management of symptoms, patients’ high symptom loads and high carer burden are all associated with carer distress, which may lead to complications after bereavement. The experience of having a family member referred for palliative care is also distressing for carers, with the realisation that their family member is dying. This study aimed to explore the experiences of bereaved family carers of people diagnosed with sarcoma. Methods: A qualitative descriptive design using a social constructionist framework was adopted. Interviews were conducted with sixteen participants, and thematic analysis was used to identify patterns in the data. Findings: Four overarching themes emerged: beginning the journey; moving through treatment; transitioning to palliative care; and experiencing bereavement. The narratives were coherent and potent, and people reflected on their journeys. Conclusions: Interventions and supports for bereaved carers could include opportunities for counselling to support reflections, supports for developing a narrative such as writing therapy, and preparation for the death of the family member.

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"It Wasn't Like We Expected": Analyzing (Non-)Participation of Family Caregivers of People With Dementia in Sports Activities From Different Perspectives

Background: Family caregivers of people with dementia represent a physically and psychologically burdened target group, which can benefit from offers of health promotion, but rarely use existing services. This article deals with the motives and conditions that induce this target group to be (not) active in sports. Methods: For this purpose, the perspectives of family caregivers and local sports clubs in Germany are compared to uncover similarities and discrepancies with the aim of developing target group-specific health promotion services. Results: Results were classified into three dimensions for (non-)participation in sports activities. People who participated in sports club programs generally confirmed its positive effects. Among other things, the sports clubs and family caregivers surveyed emphasized the compatibility of the care situation with possible leisure activities as very important components for (non-)participation. Conclusions: The results show that the subjective health attitudes must be taken into account in the design of health promotion offers.

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Investigation of the effects of interventions made according to the Progressively Lowered Stress Threshold Model on the care outcomes of Alzheimer patients and their families: a randomized clinical trial

Background: One of the non‐pharmacological methods used to reduce behavioural problems of Alzheimer's patients and the negative emotions accordingly experienced by caregivers consists of interventions performed according to the Progressively Lowered Stress Threshold (PLST) model. Methods: This randomized controlled study aimed to determine the effect of interventions performed according to PLST on the care burden, care satisfaction, and life satisfaction of caregivers of middle and advanced stage Alzheimer's disease patients, and on the neuropsychiatric symptoms and agitation levels of these patients. The research was conducted with a total of 29 caregivers divided into intervention (15) and control (14) groups. Data were collected using an Introductory Information Form, plus the Standardised Mini‐Mental State Examination, Neuropsychiatric Inventory, Cohen‐Mansfield Agitation Inventory, Carer's Assessment of Satisfaction Index, and Life Satisfaction Scale. Three home visits were made to the caregivers by the researchers in the first, second, and twelfth weeks of the intervention. During the home visits, face‐to‐face training was given as necessary to the individual caring for problems identified in the nursing care plan according to PLST. Results: As a result of the PLST training, there was a decrease in the behavioural problems of Alzheimer's patients, along with a decrease in the care burden of the caregivers and an increase in their care satisfaction. When the scale total scores of the individuals in the intervention and control groups were compared, it was found that only caregivers' care satisfaction increased at a statistically significant level (P < 0.05). Conclusion: At the end of the training given according to PLST, it was found that behavioural problems of Alzheimer's patients and the care burden of caregivers had decreased, and the care satisfaction of caregivers increased. It is recommended that Alzheimer's patients and their caregivers be given training and interventions according to PLST.

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Interventions to improve the well-being of family caregivers of patients on hemodialysis and peritoneal dialysis: a systematic review

Background: The family caregivers of patients on hemodialysis (HD) and peritoneal dialysis (PD) typically experience higher burden than the general population because of the nature of tasks these caregivers need to carry out as a part of homecare. This fact influences both the caregivers’ quality of life and the quality of their care toward the patient. Thus, this study aimed to review the effectiveness and limitations of interventions in improving the well-being of family caregivers of patients on HD and PD. Methodology: A systematic review was performed according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and the Cochrane Handbook for Systematic Reviews of Interventions (version 5.1.0). The Cochrane Library, Cumulative Index to Nursing and Allied Health Literature, Embase, MEDLINE, VHL Regional Portal, Scopus, and Web of Science databases were searched queried for randomized controlled trials that developed interventions aimed at improving the well-being of family caregivers of patients undergoing HD and/or PD from 2009 to 2020. The study protocol was registered at the International Prospective Register of Systematic Reviews (registration no. CRD42020151161). Results: Six studies met the inclusion criteria, all of which addressed caregivers of patients undergoing HD. All interventions reported in the included studies were carried out in group sessions, which addressed topics such as patient assistance and care, treatment complications, coping strategies, caregiver self-care practices, problem solving, and self-efficacy. The studies found significant improvement in the caregiver’s well-being. Conclusions: Group session interventions are effective in improving the well-being of family caregivers of patients undergoing HD. In regard to PD, there is insufficient evidence to make recommendations for caregivers of patients with this treatment.

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Interventions to Improve Health and Well-Being Among Family Caregivers of Older Adults With Chronic Illnesses: A Scoping Review

Background: Caregivers of older adults with chronic illnesses often face challenges that harm their health and well-being. Evidence-based strategies are needed to address such outcomes. Objectives: The current study aims to synthesize interventions designed to improve the health and well-being of caregivers of older adults with chronic illnesses. Methods: Search strategies included investigating four databases (e.g., PubMed, CINAHL), as well as conducting bibliographic, hand, and author searches. Eligible studies were randomized controlled trials conducted between 2009 and 2019 that included family caregivers of older adults with chronic illnesses aged =65 and that reported caregiver health or well-being outcomes. Results: Data from 24 eligible studies were extracted, analyzed, and narratively synthesized. Conclusions: Although intervention characteristics were diverse (e.g., strategies, interventionists), most improved health and well-being. Thus, providers have an array of interventions available to them to help caregivers. Future caregiver research should examine theory-driven interventions among diverse samples, clearly report intervention dose, and measure physical health.

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Interventions for Family Members and Carers of Patients with Borderline Personality Disorder: A Systematic Review

Background: Carers of patients with borderline personality disorder (BPD) experience high levels of distress. Several studies have been carried out on interventions designed to decrease their burden. However, the evidence from these studies has not been summarized. Objective: The objective of this work is to explore the clinical utility of interventions developed for family members of patients with BPD. Methods: A systematic review was conducted following the PRISMA guidelines (registration number CRD42018107318), including psychological interventions focused on relatives of patients with BPD. The following databases were used: PsycINFO, PubMed, EBSCOhost, and Web of Science. Two independent researchers reviewed the studies to determine whether the eligibility criteria were met. A total of 2,303 abstracts were identified. Results: After duplicates had been removed, 1,746 studies were screened. Finally, 433 full‐text articles were reviewed, yielding 11 studies that satisfied the inclusion criteria. Results show that these interventions with different clinical formats and settings are effective. The quality of the included studies varies, and the empirical support for these programs is still preliminary. Conclusions: The results help to establish a general framework for interventions specifically developed for family members of patients with BPD, but additional efforts should be made to improve the methodological quality of this field of research and more solidly determine the utility of these interventions. Given the paucity of data so far, this information may open up new lines of research to improve the effectiveness of future programs for carers of patients with BPD and help to reduce their burden.
 

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Interventions for Family Members After Long-Term Care Placement of a Relative With Dementia: A Systematic Review and Meta-Analysis

Objectives: The current systematic review aimed to identify, appraise, and synthesize the available evidence regarding interventions that assisted family members of long-term care facility residents with dementia to cope with stressful situations. Methods: A search of published articles in eight databases was performed. Results: In total, 1,293 records were identified, with six studies included in this systematic review. Interventions were categorized as education/skill training, psychoeducation, and psychosocial support. The risk of bias across the included studies varied from moderate to high. The intervention components, dose, and delivery methods differed widely with mixed results. The interventions showed potential benefits for reducing family members' stress-related outcomes (e.g., stress appraisal, guilt) and residents' problematic behaviors. Yet, meta-analysis yielded a non-significant pooled effect for reducing family members' depressive symptoms (mean difference = 1.38, 95% confidence interval [–2.27, 5.04], The current systematic review aimed to identify, appraise, and synthesize the available evidence regarding interventions that assisted family members of long-term care facility residents with dementia to cope with stressful situations. A search of published articles in eight databases was performed. In total, 1,293 records were identified, with six studies included in this systematic review. Interventions were categorized as education/skill training, psychoeducation, and psychosocial support. The risk of bias across the included studies varied from moderate to high. The intervention components, dose, and delivery methods differed widely with mixed results. The interventions showed potential benefits for reducing family members' stress-related outcomes (e.g., stress appraisal, guilt) and residents' problematic behaviors. Yet, meta-analysis yielded a non-significant pooled effect for reducing family members' depressive symptoms (mean difference = 1.38, 95% confidence interval [–2.27, 5.04], p = 0.46). Conclusions: Evidence in this field is currently insufficient and more well-designed studies with larger sample sizes and use of theoretical frameworks are needed. 

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Intergenerational familial care: Shaping future care policies for older adults

Background: An increasingly ageing society together with concerns about sustainability of old-age benefits call for reforming the care structure of many western welfare states. However, finding an acceptable balance between the formal care provided by institutions and informal care provided by family members is a delicate policy choice with profound ethical implications. In this respect, literature on intergenerational familial relationships can offer insights to inform policymaking in this field and help resolve the ethical concerns that excessive reliance on informal caregiving might entail. Methods: In this contribution, we start by presenting – with Switzerland as a case study – the challenges of the current care structure and illustrate some of the ethical issues that reshaping the balance between formal and informal care raises. We then review and analyse available theoretical literature on intergenerational familial relationships and present three dimensions that underpin such relationships: ethical, theoretical and practical. Findings: Based on our analysis, we provide two recommendations to inform policymaking on how to support care needs of the elderly and set an ethically acceptable balance between formal and informal care when familial generations are involved.

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Intergenerational caring: a systematic literature review on young and young adult caregivers of older people

Background: The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. Methods: This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers. To this purpose, the findings of this review are framed within the caregiving stress appraisal model (renamed CSA model) elaborated by Yates’ and collegues, in order to highlight differences between young caregivers and the older ones. Methods Multiple databases including PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were used to carry out a systematic review of the literature. Additional references were retrieved from experts contacted and research knowledge. The selected articles underwent both methodological appraisal and contents analysis: for every article an appraisal score was calculated and themes and sub-themes were identified. Results: Out of the ten included studies three were mixed methods, six qualitative and one quantitative. Nine reached a high quality methodological score and one medium. Four main themes emerged from the content analysis: aspects of the caregiving relationship; effects of caregiving; coping strategies; recommendations for services, policy and research. Conclusions: Selected studies explored practical features of the relationship between young caregivers and older family members (tasks performed, motivations, coping strategies) and highlighted both positive and negative outcomes on young people’s everyday life condition and future development. Nevertheless, these evidences were often limited to small samples that did not allow to make generalizations. More studies are needed including large samples in order to deepen the different aspects of caregiving and design tailored support services.

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Interaction of caregiver-expressed emotions and neuropsychiatric symptoms in persons with dementia: a longitudinal cohort study

Background: Neuropsychiatric symptoms (NPS) have a major impact in persons with dementia (PwD). The interaction between the caregiver and the person with dementia may be related to the emergence of NPS. The concept of expressed emotion (EE) is used to capture this dyadic interaction. Objectives: The aim of the present study is to examine longitudinally the association between EE in caregivers and NPS in PwD living at home. Design: A longitudinal cohort study with 2 years of follow-up. Setting: PwD and their informal caregivers living at home in the south of the Netherlands. Participants: 112 dyads of PwD and their caregivers from the MAAstricht Study of BEhavior in Dementia. Main outcome measures: EE was measured at baseline with the Five-Minute Speech Sample and was used to classify caregivers in a low-EE or high-EE group. Associations between EE and neuropsychiatric subsyndromes (hyperactivity, mood and psychosis) measured with the Neuropsychiatric Inventory (NPI) were analysed over time. Results: Seventy-six (67.9%) caregivers were classified in the low-EE group and 36 (32.1%) in the high-EE group. There was no difference between the EE groups in mean NPI scores over time. In the high-EE group, hyperactivity occurred more frequently than in the low-EE group at baseline (p=0.013) and at the other time points, but the mean difference was not always significant. There were no differences for the mood and psychosis subsyndromes. PwD with caregivers scoring high on the EE subcategory critical comments had an increased risk of institutionalisation (OR 6.07 (95% CI 1.14 to 32.14, p=0.034)) in comparison with caregivers scoring low on critical comments. Conclusions: High EE in informal caregivers is associated with hyperactivity symptoms in PwD. This association is likely to be bidirectional. Future studies investigating this association and possible interventions to reduce EE are needed.

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The Interaction Between Hematological Cancer Patients and Family Caregivers and Their Life Changes

Background: Diagnosis of hematological cancer affects patients and caregivers as a unit. Few studies have focused on the relationship between hematological cancer patients and their caregivers. Objective: To explore (a) the interaction between patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers and (b) perceived changes in lives of patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers. Methods: We used a qualitative descriptive design with a dyadic approach. The study sample included 11 patients with hematological cancer and 11 family caregivers selected through purposive sampling. In-depth interviews were conducted using a semistructured interview format. Results: As a result of a content analysis, 3 themes emerged: hidden emotions, companionship,and life changes. Both the patients and the family caregivers described coping by hiding their feelings, thoughts, and needs and reducing communication with each other. Dyadmembers described commitment to each other and an increase in confidence. In addition, the patients and the family caregivers experienced changes in their roles and perspectives during the diagnosis and treatment process. Conclusion: Patients with hematological cancer and family caregivers need nurses' support. Nurses should be prepared to provide patient-caregiver--based interventions. Implication for Practices: It is important that nurses take action to strengthen the relationship between patients and their caregivers, particularly with a focus on carrying out interventions to improve communication between them. Nurses can also strengthen dyads' coping by drawing attention to positive developments in their perspectives and relationships.

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Integration of family caregivers in delirium prevention care for hospitalized older adults: A case study analysis

Aim: To understand how family caregivers of older adults hospitalized for orthopaedic surgery are integrated by nurses in delirium prevention care. Design: Multiple case study. Methods: The sample consisted of eight cases. Each case comprised an older adult, a family caregiver, and a nurse. Data were collected from September 2017 ‐ April 2018 through various instruments, including semi‐structured interviews and family caregiver logs. Within‐ and across‐case analyses were conducted, based on the model of The Care Partner Engagement developed by Hill, Yevchak, Gilmore‐Bykovskyi, & Kolanowski (Geriatric Nursing, 35, 2014, 272). Results: Two themes emerged: (a) family caregivers were engaged in caring for the older adults during their hospital stay, though they had differences in terms of views and needs; and (b) family caregivers communicated with nurses but nurses did not recognize their role and did not integrate them much in care. Conclusion: The presence and availability of family caregivers, their sense of responsibility towards the hospitalized older adults, and their positive effects on them suggest that family caregivers could be integrated more systematically in a care partnership with nurses. Poor integration of family caregivers in delirium prevention care shows that nurse delirium prevention competencies and their relational skills for communicating effectively with family caregivers need to be developed further. Impact: Integrating family caregivers in delirium prevention care for older adults is a challenge for nurses. Family caregivers are engaged during the hospitalization of older adults, though differences and problems exist between the two groups. While there is communication between patients, family caregivers, and nurses, nurses do not recognize the role of family caregivers and hardly integrated them in the delirium prevention care of hospitalized older adults. Nurses must adopt a patient‐ and family‐centred approach. Care and training facilities must make resources available to implement this approach in nursing practice.
 

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Integrated health and social care in the community: A critical integrative review of the experiences and well‐being needs of service users and their families

Background: A need for people‐centred health and social support systems is acknowledged as a global priority. Most nations face challenges in providing safe, effective, timely, affordable, coordinated care around the needs and preferences of people who access integrated health and social care (IHSC) services. Much of the current research in the field focuses on describing and evaluating specific models for delivering IHSC. Fewer studies focus on person‐centred experiences, needs and preferences of people who use these services. However, current international guidance for integrated care sets a precedence of person‐centred integrated care that meets the health and well‐being needs of people who access IHSC services. Methods: This integrative literature review synthesises empirical literature from six databases (CINAHL; MEDLINE; AMED; TRIP; Web of Science and Science Direct; 2007–2019). This review aims to better understand the experiences and health and well‐being needs of people who use IHSC services in a community setting. Results: Twenty studies met the inclusion criteria and results were thematically analysed. Three overarching themes were identified, including relationships, promoting health and well‐being and difficulty understanding systems. Findings of this review indicate that relationships hold significance in IHSC. People who access IHSC services felt that they were not always involved in planning their care and that there was a lack of clarity in navigating integrated systems; subsequently, this impacted upon their experiences of those services. However, service user and informal carer voices appear to be underrepresented in current literature and studies that included their views were found to be of low quality overall. Conclusions: Collectively, these findings support the need for further research that explores the person‐centred experiences and needs of people who access IHSC.

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Integrated health and social care in the community: A critical integrative review of the experiences and well‐being needs of service users and their families

Background: A need for people‐centred health and social support systems is acknowledged as a global priority. Most nations face challenges in providing safe, effective, timely, affordable, coordinated care around the needs and preferences of people who access integrated health and social care (IHSC) services. Much of the current research in the field focuses on describing and evaluating specific models for delivering IHSC. Fewer studies focus on person‐centred experiences, needs and preferences of people who use these services. However, current international guidance for integrated care sets a precedence of person‐centred integrated care that meets the health and well‐being needs of people who access IHSC services. Methods: This integrative literature review synthesises empirical literature from six databases (CINAHL; MEDLINE; AMED; TRIP; Web of Science and Science Direct; 2007–2019). This review aims to better understand the experiences and health and well‐being needs of people who use IHSC services in a community setting. Results: Twenty studies met the inclusion criteria and results were thematically analysed. Three overarching themes were identified, including relationships, promoting health and well‐being and difficulty understanding systems. Findings of this review indicate that relationships hold significance in IHSC. People who access IHSC services felt that they were not always involved in planning their care and that there was a lack of clarity in navigating integrated systems; subsequently, this impacted upon their experiences of those services. However, service user and informal carer voices appear to be underrepresented in current literature and studies that included their views were found to be of low quality overall. Conclusions: Collectively, these findings support the need for further research that explores the person‐centred experiences and needs of people who access IHSC.

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Informational Needs of the Families of Patients Discharged From Intensive Care Units: A Case of Iran

Background: thousands of patients are admitted to intensive care units annually, which is a stressful event. Many of these patients still require particular care after discharge. In many countries, families play an essential role in taking care of these patients after discharge. Objectives: This study aimed to determine the informational needs of families of patients discharged from Intensive Care Units (ICU), Kerman, southeast Iran. Methods: this study had a cross-sectional design. Families were selected using the information extracted from patients' medical records. One hundred forty family members of the ICU discharged patients participated in the survey using convenience sampling. Data collection tools were a validated researcher-made questionnaire about informational needs and a demographic characteristics form. Results: the mean score of family informational needs was 31.18 ± 3.97 out of 40. Most families required a high level of information in all dimensions. However, the maximum need was associated with self-care subscale (4.89 out of 5), and the minimum need was associated with defecation (3.13 out of 5). Conclusion: the families of patients discharged from intensive care units required much information about different areas of care particularly self-care. Health care providers, especially nurses, should be aware of the informational needs of the ICU patients' families post-discharge to provide better care.

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Information Needs and Resources and Self-Management Challenges of Parents Caring for a Child with Asthma in China

Objectives: The aim of this assessment was to determine the information needs, resources, and resource preferences and self/family-management challenges of parents caring for a child with asthma in China. The acceptance of asthma and consolidated framework for implementation research guided the study. Methods: A cross-sectional, descriptive design was used. Seventy-one parents of a child receiving care in an outpatient respiratory clinic completed a three-part, pragmatic, self-report survey. Quantitative data were analyzed using descriptive statistics and qualitative data using thematic analysis. Findings: Parents, who needed more knowledge about asthma, sought information from internet sources. However, most parents preferred receiving information during in-person consultation with trained specialists. Management challenges revolved around understanding asthma information, formulating beliefs about asthma, experiencing distressing thoughts and feelings, forming supportive networks, and meeting their child's emotional needs. Conclusion: Evidence supports expanding nursing roles in China to include extended time for initial in-person parental interactions and follow-up using reliable clinic-based internet counseling.

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Informal Family Caregiving at the End of Life: A Discursive Analysis

Background: Shifts in locations and levels of care and changing demographics have created a high demand for informal family caregivers. The U.S. healthcare system could not sustain the financial or human resources necessary to meet the needs of care recipients who are dying without the assistance of informal family caregivers. End-of-life caregivers pay a price— emotional, social, financial, and physical—throughout the caregiving process. Many factors contribute to the cost of caregiving, such as caregiver distress and burden. Despite the extensive scientific literature on caregiving at the end of life, necessary evidence to inform nursing science in ways that adequately and appropriately support and sustain those healthy informal family caregivers providing end-of-life care remains unknown. No research to date has approached this problem from a linguistic standpoint. Methods: This study used discourse-based analysis to examine a qualitative secondary dataset to understand which aspects of self (caregiver) and other (care recipient) are revealed through caregiver discourse and how a caregiver’s perception of self and the care recipient change over time. Principles of discourse analysis were applied to develop an analytic framework and explore the linguistic cues (i.e., grammar, reference, identity, deixis, stance, indexicality and agency) expressed by a caregiver in their role as caregiver. Findings: Findings demonstrated the usefulness of a discourse-based analytic method as a new approach in the reuse of large qualitative secondary datasets. In addition, linguistic cues were revealed about how a caregiver perceives self and the care recipient over time. Results established an analytic framework that can be applied to a larger sample of this dataset to more deeply and precisely reveal discursive cues within one End-of-Life Caregiving Trajectory (expected-death) and across all three trajectories (expected-death, unexpected-death and mixed-death). Understanding a caregiver’s discursive cues may give clinicians the ability to better identify subtle yet important expressions of caregivers’ perception of self and others in the caregiving role. Conclusions: Further analysis is needed to identify how these linguistic patterns can lead to interventions that support informal family caregivers. Timely and appropriate interventions in times of uncertainty can mitigate negative outcomes for the caregiver and care recipient, resulting in a healthy caregiving workforce.

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Informal carers' support needs when caring for a person with dementia – A scoping literature review

Background: Informal carers of people with dementia report having unmet needs for support and few supportive interventions have been shown to be effective. There is a need to develop needs assessment instruments and supportive interventions with a holistic and person‐centred approach to meet the various and complex needs of carers. Objectives: The aim of this study was to provide an overview of carers' support needs when caring for people with dementia with the objectives to map and synthesise knowledge on key concepts of carers' support needs. Methods: A scoping review methodology was used. A literature search was conducted in PsycINFO, CINAHL, PubMed and EMBASE between January 2007 and October 2019. Three authors independently selected articles meeting the inclusion criteria, and data were extracted using a matrix developed for that purpose. Inductive content analysis was used to synthesise key concepts of carers' support needs. Results: The search identified 2748 articles after removing duplicates, and 122 articles were included in the mapping of carers' support needs. Synthesising carers' support needs indicated that the full extent of support needs emerges in the interaction between the carer and the person cared for and that it is possible to categorise support needs into four key concepts related to: 1) the carer as a person, 2) managing being a carer, 3) providing care, and 4) knowledge of dementia. Conclusion: The findings of this study help to map a framework describing carers' support needs that may guide the development of future needs assessment instruments and supportive interventions.

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Informal caregiving in schizophrenia: correlates and predictors of perceived rewards

Background: Schizophrenia is a debilitating mental illness that has repercussions for the afflicted individual as well as the immediate family. While family caregiving entails enormous burden, it is also acknowledged that the experience may be perceived as being rewarding. Objectives: This study seeks to understand key aspects of caregiving in terms of perceived rewards, the experience of hope, and the social support available to family caregivers. Methods: Standardized instruments to assess these variables were administered to primary caregivers of people with schizophrenia and a comparative group. Results: It was seen that both hope, and perceived social support significantly predicted reward perception in the caregivers.

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Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers’ Lives

Background: Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients’ informal caregivers (CGs) in their health, personal and professional lives. Objectives: The big efforts of this multi-center study were not only to evaluate the caregivers’ burden and to identify its predictors, but it also should provide a specific understanding of the needs of ALS patients’ CGs and fill the gap of knowledge on their personal and work lives. Methods: Using standardized questionnaires, primary data from patients and their main informal CGs (n = 249) were collected. Patients’ functional status and disease severity were evaluated using the Barthel Index, the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) and the King’s Stages for ALS. The caregivers’ burden was recorded by the Zarit Burden Interview (ZBI). Comorbid anxiety and depression of caregivers were assessed by the Hospital Anxiety and Depression Scale. Additionally, the EuroQol Five Dimension Five Level Scale evaluated their health-related quality of life. Results: The caregivers’ burden was high (mean ZBI = 26/88, 0 = no burden, ≥24 = highly burdened) and correlated with patients’ functional status (rp = −0.555, p < 0.001, n = 242). It was influenced by the CGs’ own mental health issues due to caregiving (+11.36, 95% CI [6.84; 15.87], p < 0.001), patients’ wheelchair dependency (+9.30, 95% CI [5.94; 12.66], p < 0.001) and was interrelated with the CGs’ depression (rp = 0.627, p < 0.001, n = 234), anxiety (rp = 0.550, p < 0.001, n = 234), and poorer physical condition (rp = −0.362, p < 0.001, n = 237). Moreover, female CGs showed symptoms of anxiety more often, which also correlated with the patients’ impairment in daily routine (rs = −0.280, p < 0.001, n = 169). As increasing disease severity, along with decreasing autonomy, was the main predictor of caregiver burden and showed to create relevant (negative) implications on CGs’ lives, patient care and supportive therapies should address this issue. Moreover, in order to preserve the mental and physical health of the CGs, new concepts of care have to focus on both, on not only patients but also their CGs and gender-associated specific issues. Conclusions: As caregiving in ALS also significantly influences the socioeconomic status by restrictions in CGs’ work lives and income, and the main reported needs being lack of psychological support and a high bureaucracy, the situation of CGs needs more attention. Apart from their own multi-disciplinary medical and psychological care, more support in care and patient management issues is required.

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Informal Caregiving and Strains: Exploring the Impacts of Gender, Race, and Income

Background: Informal caregivers are those who provide care for others without compensation. In the US, 85 % of elderly individuals receive care from an informal caregiver, and this number is expected to increase. Caregivers often experience different types of strain, stemming from physical, emotional, and financial demands. Methods: Guided by intersectionality theory, this study explores the relationships between informal caregiving strains and gender, race, and income, along with various control variables, including age, marital status, education, number of hours spent providing care, and employment status. Data from the 2015 Caregiving in the US survey (N = 1248) were used. Results: Findings indicated male informal caregivers reported more financial strain compared to females. White women reported more emotional strain than women of color, and those with higher incomes reported less financial strain. Gender, race, and income were not significantly related to physical strain among informal caregivers. Conclusions: Implications, limitations, and suggestions for future research are discussed. 

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Informal Caregiving and Disaster Risk Reduction: A Scoping Review

Background: Informal caregivers are a population currently in the shadows of disaster risk reduction (DRR), and yet essential to the provision of healthcare services. This scoping review explored the literature to understand issues related to informal caregiving and promising practices to support resilience for disasters. Methods: Following guidelines for scoping review as outlined by Tricco et al. (2016), relevant publications were identified from five major databases—Medline, Embase, PubMed, Web of Science, and Scopus. Relevant studies referenced informal caregiving and disasters for a variety of population groups including children, people with disabilities or chronic illnesses, and older adults. Studies were excluded if they discussed formal caregiving services (for example, nursing), lacked relevance to disasters, or had insufficient discussion of informal caregiving. Results: Overall, 21 articles met the inclusion criteria and were fully analyzed. Five themes were identified: (1) the need for education and training in DRR; (2) stressors around medication and supply issues; (3) factors affecting the decision-making process in a disaster; (4) barriers leading to disaster-related problems; and (5) factors promoting resilience. Recommended areas of strategic action and knowledge gaps are discussed. Many informal caregivers do not feel adequately prepared for disasters. Conclusions: Given the important role of informal caregivers in healthcare provision, preparedness strategies are essential to support community resilience for those requiring personal care support. By understanding and mobilizing assets to support the resilience of informal caregivers, we also support the resilience of the greater healthcare system and the community, in disaster contexts.

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Informal Caregiving and All-Cause Mortality: A Meta-Analysis of Longitudinal Population-Based Studies

Methods: Using the random-effects meta-analysis model, we investigated the effect of informal caregiving on all-cause mortality across 12 longitudinal population-based studies (seven United States; five international: United Kingdom, Northern Ireland [2], Japan, and Australia). Results: Across the studies, the combined effect of informal caregiving on all-cause mortality was 16% lower in favor of caregivers. Subgroup analyses revealed that the relationship between informal caregiving and all-cause mortality was not significant among the U.S. studies, in contrast to the international studies. Also, the mortality advantage of informal caregivers was not evident among those studies in which informal caregiving was operationalized precisely (Activity of Daily [ADL]/Instrumental Activity of Daily Living [IADL] assistance) as opposed to more broadly. Furthermore, studies in which the kinship tie between the informal caregiver and care recipient was unspecified tended to find a mortality advantage in favor of caregivers. Conclusions: When covariates were considered, the results of this meta-analysis provided more support for stress theory than the healthy caregiver hypothesis. 

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Informal caregivers’ quality of life and management strategies following the transformation of their cancer caregiving role: A qualitative systematic review

Objectives: Globally, informal caregivers caring for cancer patients meet challenges within their caregiving role, which significantly influence their quality of life. This qualitative systematic review aimed to analyze how cancer caregiving influence the quality of life of informal caregivers and the management strategies of informal caregivers for their role as cancer caregivers. Methods: Following the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement, Wanfang database, the China National Knowledge Infrastructure (CNKI), CINAHL, MEDLINE, PubMed, Cochrane Library, PsycARTICLES and PsycINFO, and grey literature in English and Chinese from 1 May 2009 to 31 December 2019 were searched. Quality of included studies was assessed by the Critical Appraisal Skills Programme (2018) Qualitative Checklist and thematic synthesis was conducted. Results: Of the 8,945 studies identified, 6 studies met the inclusion criteria. One analytical theme relating to the QoL of informal caregivers following cancer caregiving was identified: “challenges of caregiving”. In terms of the management strategies to the role of cancer caregivers, two analytical themes were identified: “self-adjustment” and “seeking for formal and informal support”. Conclusions: Cancer caregiving influences informal caregivers’ QoL significantly and informal caregivers develop diverse coping strategies to deal with the difficulties occurred while balancing the relationship between their own lives and caregiving. However, professional and policy support remain inadequate for informal caregivers that require the need for improvement in terms of health care professionals and policymakers. 

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Informal Caregivers' Well-Being at the Transition to Caregiving

Objectives: The aim of this study was to describe the psychological and physical health needs of informal caregivers in a rehabilitation hospital and explore differences related to informal caregiver and care recipient characteristics. Readiness to engage in health promotion and perspectives on mindfulness meditation were assessed. Methods: Informal caregivers (N = 33) to patients receiving inpatient or outpatient treatment completed the Multidimensional Health Profile screening tools. Readiness to change was assessed using the readiness ruler approach. Results: Almost half of participants (45.5%) had a chronic illness and 18.2% reported that it interferes with daily functioning. Low Positive Health Habits were reported by 43% of participants, and Negative Health Habits were reported by 25%. A subgroup (15%–20%) reported both physical and mental health concerns. A majority of participants indicated it was both very important for them to improve their physical and mental health and felt very confident they could do so. Receptivity to mindfulness meditation was high, with 72.7% reporting an interest. Comprehensive screening and counseling interventions to address the physical and mental health of informal caregivers in physical rehabilitation hospital settings are needed, and information gained from screening could be addressed in interventions delivered by systems-oriented rehabilitation counselors. Conclusion: A mindfulness meditation intervention may be a useful strategy for promoting well-being in this population.

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Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties

Background: Amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) is a systemic and fatal neurodegenerative condition for which there is currently no cure. Informal caregivers play a vital role in supporting the person with ALS, and it is essential to support their wellbeing. This multi-centre, mixed methods descriptive exploratory study describes the complexity of burden and self-defined difficulties as described by the caregivers themselves. Methods: Quantitative and qualitative data were collected during face-to-face interviews with informal caregivers from centres in the Netherlands, England, and Ireland. Standardised measures assessed burden, quality of life, and psychological distress; furthermore, an open-ended question was asked about difficult aspects of caregiving. Results: Most caregivers were female, spouse/partners, and lived with the person with ALS for whom they provided care. Significant differences between national cohorts were identified for burden, quality of life, and anxiety. Among the difficulties described were the practical issues associated with the caregiver role and emotional factors such as witnessing a patient’s health decline, relationship change, and their own distress. The mixed-methods approach allows for a more nuanced understanding of the burden and difficulties experienced. Conclusion: It is important to generate an evidence base to support the psychosocial wellbeing and brain health of informal caregivers.

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Informal caregivers during the COVID-19 pandemic perceive additional burden: findings from an ad-hoc survey in Germany

Background: While the relation between care involvement of informal caregivers and caregiver burden is well-known, the additional psychosocial burden related to care involvement during the COVID-19 pandemic has not yet been investigated. Methods: A total of 1000 informal caregivers, recruited offline, participated in a cross-sectional online survey from April 21 to May 2, 2020. Questionnaires were used to assess COVID-19-specific changes in the care situation, negative feelings in the care situation, problems with implementation of COVID-19 measures, concerns/excessive demands, loss of support, change in informal caregivers’ own involvement in care and problems with provision, comprehension & practicability of COVID-19 information, and to relate these issues to five indicators of care involvement (i.e., being the main caregiver, high expenditure of time, high level of care, dementia, no professional help). Binomial and multiple regression analyses were applied. Results: Across indicators of care involvement, 25.5–39.7% reported that the care situation rather or greatly worsened during the COVID-19 pandemic, especially for those caring for someone with dementia or those usually relying on professional help. In a multiple regression model, the mean number of involvement indicators met was associated with age (β = .18; CI .10–.25), excessive demands (β = .10, CI .00–.19), problems with implementation of COVID-19 measures (β = .11, CI .04–.19), an increase in caregiving by the informal caregivers themselves (β = .14, CI .03–.24) as well as with no change in the amount of caregiving (β = .18, CI .07–.29) and loss of support (β = −.08, CI −.16–.00). No significant associations with the mean number of involvement indicators met were found for gender, educational level, change in the care situation, negative feelings, and provision, comprehension & practicability of COVID-19 information. Conclusion: Those caregivers who perceived extensive care burden were those who suffered most during the pandemic, calling for structural support by the healthcare system now and in the future. Trial registration This article does not report the results of a health care intervention on human participants.

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Informal caregivers and persons with dementia’s everyday life coping

This qualitative study explores informal caregivers’ experiences of supporting persons with dementia’s everyday life coping. In the future, there will be fewer health personnel, increased dementia prevalence and limited nursing home availability. Accordingly, close relatives may be compelled to assume greater care responsibilities. Knowledge concerning persons with dementia’s everyday coping from the perspective of informal caregivers remains insufficient, despite these people’s importance for those with dementia. This investigation analyses informal caregivers’ perceived challenges and pleasures in providing care, how home health care affects everyday life coping and the factors that are most important to informal caregivers in supporting care receivers.

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Informal caregiver well-being during and after patients’ treatment with adjuvant chemotherapy for colon cancer: a prospective, exploratory study

Introduction: Caring for a significant other during cancer treatment can be demanding. Little is known about the well-being of informal caregivers of patients with colon cancer. This study aims to examine informal caregiver well-being during adjuvant chemotherapy for colon cancer. Material and methods: This exploratory longitudinal, prospective study measured the course of informal caregiver burden (Self-Perceived Pressure of Informal Care), distress (Hospital Anxiety and Depression Scale), health-related quality of life (RAND-36), marital satisfaction (Maudsley Marital Questionnaire), social support (Social Support List – Discrepancies), fatigue (Abbreviated Fatigue Questionnaire), and self-esteem (Caregiver Reaction Assessment) before (T0), during (T1), and after (T2) patients’ treatment. Results: Baseline data of 60 out of 76 eligible dyads (79%) were analyzed. Mean levels of informal caregiver burden and distress improved significantly over time, as did their health-related quality of life and perceived social support. At baseline, 30% and 26.7% of informal caregivers reported moderate-to-high levels of burden and clinically relevant levels of distress, respectively, which changed to 20% and 18.8% at T2. Informal caregiver burden and distress at baseline were the strongest predictors of informal caregiver burden and distress during and following patients’ treatment, respectively. Conclusion: When informal caregivers and patients experience problems before start of adjuvant chemotherapy, problems seem to improve over time. Approximately 20% of informal caregivers remain burdened and distressed after patients’ end of treatment. Paying attention to baseline distress and burden seems indicated, as these were strong predictors of informal caregivers’ well-being during and after treatment. 

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Informal care in the context of long-term health care for the elderly in Slovenia: A qualitative study

Background: Slovenia is an aging society. Social security expenditures for the elderly are rising steadily, and the majority of Slovenians are firmly convinced that the state must provide elder care. This situation means that informal caregivers face many challenges and problems in their altruistic mission. Objectives: To explore the experiences and feelings of informal caregivers and to provide an understanding of how informal caregivers support the elderly and what challenges and difficulties they face in Slovenian society. Methods: The study is based on qualitative semi-structured interviews with 10 caregivers. In addition to descriptive statistics, we conducted a qualitative study using the qualitative content analysis method. Findings: We identified four themes among health caregivers’ experiences with challenges and problems in providing long-term health care for the elderly. Caregivers pointed out that they are mostly left to themselves and their altruistic mission of giving informal long-term care to their elderly relatives and friends. Systemic regulation of the national public health care system is the source of many problems. Other social systems determine and limit the position of informal caregivers in Slovenia. Conclusions: This qualitative study should be understood as useful stepping-stone to future research and real improvement in this area.

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Influences of Work and Family Spillover on Filial and Sandwiched Caregivers' Psychological Well-Being

Background: There has been a documented increase in the numbers of filial and sandwiched caregivers in the United States. However, past studies have overlooked the impact of work and family overload on caregiver well-being. Methods: This study investigates the moderating influences of the quality and directionality of work and family spillover on the well-being (e.g., positive affect and negative affect, psychological well-being, and global well-being) of 180 filial and sandwiched caregivers from the second wave of the Midlife in the United States Survey. Results: Regression and moderation analyses revealed that sandwiched caregivers with high levels of negative work-to-family spillover exhibited higher negative affect than the comparison groups. Sandwiched caregivers with high levels of negative family-to-work spillover exhibited higher level of negative affect and lower level of self-acceptance than other caregivers. Conclusions: These findings can help create work programs that address spillover between work and home in the effort to promote caregiver well-being.

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Improving the End-of-Life Experience for Family Members of Cancer Patients Who Die on the Oncology Ward: The Three Wishes Project (SCI922)

Background: Although death is not an uncommon outcome for cancer patients who are admitted to the hospital, there are few inpatient interventions in oncology designed to create a personalized, compassionate end-of-life (EOL) experience for patients and families. The 3 Wishes Project (3WP) is a program where clinicians implement final wishes for dying patients. 3WP has been shown to be effective at improving the EOL experience for family members of patients who die in the intensive care unit but has not been evaluated on an oncology specific ward. Research Objectives: To implement the 3WP on an oncology ward and evaluate its influence on family members' experience of their loved one's EOL. Methods: When a patient's probability of dying is greater than 95% or if the patient will be transitioned to hospice on this oncology ward, patients and families are invited to participate in the 3WP. Wishes are elicited, implemented, documented, and categorized. Semi-structured qualitative interviews were conducted with eleven family members of cancer patients who participated in the 3WP. Interviews were digitally recorded, transcribed, and analyzed using content analysis. Results: During a course of 20 months, 144 wishes were implemented for 42 cancer patients and their families, at an average cost of $56. The majority (63%) of the 144 wishes were to humanize the environment. The overarching theme identified through the analysis of transcripts from the family interviews was that 3WP facilitates three transitions at the EOL: the transition from multiple hospital admissions to the final admission, the transition of the family member from a primary caregiver role to a family member role, and the transition from a focus on the present to a focus on legacy. Conclusion: 3WP is an intervention that can be implemented on the oncology ward to help facilitate key transitions that improve the EOL experience for families of dying cancer patients.

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The importance of familiarity with caregiving for public caregiver stigma: Evidence from a cross-sectional study in Germany

Objectives: This study aimed to investigate the association between familiarity with caregiving and public stigma towards informal caregivers of older individuals. Material and methods: The sample for this Online-Survey was identified using a quota-system based on German micro census data (N=1037; aged 18 years and older, living in Germany). Familiarity with caregiving was assessed by asking whether the participant has experience in or has friends or relatives with experience in informal or professional caregiving for individuals aged 65 years or older. Public caregiver stigma was assessed by analyzing the emotional, behavioral and cognitive reactions towards caregivers as described in a vignette. Results: Adjusted regressions analyses indicated that experience in providing informal care was associated with increased appreciative feelings and statements, and decreased social distance. Experience in providing professional care was associated with increased devaluing statements. Having friends or relatives who have experience in informal caregiving was associated with decreased social distance. Having friends or relatives who have experience in professional caregiving was associated with decreased devaluing feelings, increased appreciative feelings and decreased social distance. Conclusions: Results indicate that familiarity with caregiving, through one's own informal care experience or through contact with informal or professional caregivers, reduced public stigma towards informal caregivers. Moreover, experience with informal care or contact with professional caregivers increased appreciation of informal caregivers. However, increased negative stigmatizing statements were indicated among participants with experience in professional caregiving. Fostering contact and cooperation between informal caregivers and non-caregivers, as well as with professional caregivers may help reduce stigmatizing reactions. 

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Implementing a Reablement Intervention, "Care of People With Dementia in Their Environments (COPE)": A Hybrid Implementation-Effectiveness Study

Background and Objectives: The translation of reablement programs into practice is lagging despite strong evidence for interventions that maintain function for the person living with dementia as well as improve carer well-being. The aim was to evaluate the implementation of an evidence-based program, Care of People with Dementia in Their Environments (COPE), into health services. Research Design and Methods: An implementation-effectiveness hybrid design was used to evaluate implementation outcomes while simultaneously involving a pragmatic pre–post evaluation of outcomes for people with dementia. We report uptake, fidelity to intervention, outcomes for people living with dementia and carers, and beliefs and behaviors of interventionists contributing to successful implementation. Results: Seventeen organizations in Australia across 3 health contexts, 38 occupational therapists, and 17 nurses participated in training and implementation. While there were challenges and delays in implementation, most organizations were able to offer the program and utilized different models of funding. Overall, we found there was moderate fidelity to components of the program. Pre–post outcomes for carer well-being and coping (Perceived Change Index, p < .001) and activity engagement of the person living with dementia (p = .002) were significantly increased, replicating previous trial results. What contributed most to therapists implementing the program (Determinants of Implementation Behaviour Questionnaire) was a stronger intent to deliver (p < .001), higher confidence (p < .001), a sense of control in delivery (p = .004), and a belief the program was very useful to their clients (p = .002). Discussion and Implications: This study demonstrated that implementation is possible in multiple health systems and beneficial to individuals and their families.

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Impacts of COVID‐19 on caregivers of childhood cancer survivors

Purpose: We sought to assess the impact of disruptions due to coronavirus disease 2019 (COVID‐19) on caregivers of childhood cancer survivors. Methods: A 13‐question survey containing multiple‐choice, Likert‐type, and free‐text questions on experiences, behaviors, and attitudes during the COVID‐19 outbreak was sent to childhood cancer caregivers and completed between April 13 and May 17, 2020. Ordered logistic regression was used to investigate relationships between demographics, COVID‐related experiences, and caregiver well‐being. Results: Caregivers from 321 unique families completed the survey, including 175 with children under active surveillance/follow‐up care and 146 with children no longer receiving oncology care. Overall, caregivers expressed exceptional resiliency, highlighting commonalities between caring for a child with cancer and adopting COVID‐19 prophylactic measures. However, respondents reported delayed/canceled appointments (50%) and delayed/canceled imaging (19%). Eleven percent of caregivers reported struggling to pay for basic needs, which was associated with greater disruption to daily life, greater feelings of anxiety, poorer sleep, and less access to social support (p < .05). Caregivers who were self‐isolating reported greater feelings of anxiety and poorer sleep (p < .05). Respondents who expressed confidence in the government response to COVID‐19 reported less disruption to their daily life, decreased feelings of depression and anxiety, better sleep, and greater hopefulness (p < .001). Conclusions: Caregivers are experiencing changes to medical care, financial disruptions, and emotional distress due to COVID‐19. To better serve caregivers and medically at‐risk children, clinicians must evaluate financial toxicity and feelings of isolation in families affected by childhood cancer, and work to provide reliable information on how COVID‐19 may differentially impact their children.

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The impacts of caregiving intensity on informal caregivers in Malaysia: findings from a national survey

Background: Provision of informal care may adversely affect health, daily and social activities of the informal caregivers, but few studies have examined these effects in relation to caregiving intensity. This study examined the predictive factors associated with the effects of caregiving roles on health, daily and social activities of informal caregivers, accounting for caregiving intensity. Methods: Data of adults aged 18 years and over from the National Health and Morbidity Survey 2019 were used. Respondent’s demographic, socioeconomic, health, and caregiving-related characteristics were described using complex samples analysis. Logistic regression analysis was performed to examine the factors affecting health, daily and social activities of caregivers, accounting for caregiving intensity. Results: Five point one percent of adults in Malaysia provided informal care. High intensity caregivers were more likely to be actively employed and provided longer duration of care compared with low intensity caregivers. For low intensity caregiving, females, those aged 35–59 years, and those with long-term condition were more likely to have negative effects on health. Daily activities of non-Malays were more likely to be affected, while no factor was found significantly associated with effect on social activities. For high intensity caregiving, caregivers aged 60 and over, those received training and those without assistance were more likely to have negative effects on health. Daily activities of those without assistance were more likely to be affected. Social activities of non-Malays, those received training and those providing care for 2 years or more were more likely to be affected. Conclusions: Our study indicates that both low- and high-intensity caregivers have common features, with the exception of employment status and care duration. Caregiving, regardless of intensity, has a significant impact on caregivers. In order to reduce the negative consequences of caregiving responsibilities, all caregivers need assistance from the community and government, that is customised to their needs. By addressing the factors contributing to the negative effects of caregiving, a continuation of informal caregiving can be sustained through policies supporting the growing demand for informal care necessitated by an ageing population and higher life expectancy in Malaysia.

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The impact of uncertainty on bereaved family's experiences of care at the end of life: a thematic analysis of free text survey data

Background: Inequities in the provision of palliative care for people with cardiac disease have been well documented in the literature. Despite experiencing significant palliative care needs, those with cardiac disease are less likely to be referred to specialist palliative care services and more likely to die in a hospital when compared to those with cancer. The unpredictable trajectory of heart failure has been identified as a key barrier to providing palliative care with many people experiencing a long period of stability with appropriate medical treatment. However, as the disease progresses and cardiac function deteriorates, exacerbations of acute decompensation can lead to what is often perceived to be 'sudden' death. The aim of this study is to explore the impact of uncertainty on how death is remembered by bereaved family members of people with heart disease. Methods: Thematic analysis of free text collected during a postal survey of bereaved family's experiences of healthcare services in the last 3 months of life using the New Zealand version of the VOICES questionnaire was undertaken. Data was analysed using a three-dimensional conceptual framework of "scientific uncertainty". Results: Eight hundred and twenty-seven completed questionnaires were received of which 12.6% (n = 105) indicated that they had cared for someone at the end of life with cardiac disease. Experiences of uncertainty were found to have a significant impact upon bereaved family. Four key themes were identified; distrust in healthcare professionals, stories left incomplete, loss, regret and missed opportunity and disempowerment. Conclusions: This study highlights the ongoing impact on bereaved family when uncertainty is not made explicit in conversations regarding end of life for people with heart disease. Timely and sensitive conversations regarding the uncertainty of when death may occur is an important factor in ensuring that bereaved family are not left with unresolved narratives. Reframing how we think and talk about uncertainty in end of life care is important, as clinicians' uncertainties may not always reflect or match up with families' uncertainties. Being explicit about our inability to be certain about the timing of death may thus lead to a more positive and complete experience for bereaved family.

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Impact of the covid-19 pandemic on family carers of older people living with dementia in Italy and Hungary

Background: The COVID-19 pandemic has had a major effect on both older people with dementia and families caring for them. Methods: This paper presents the results of an online survey carried out among Italian and Hungarian family carers of people with dementia during the first pandemic wave (May–July 2020, n = 370). The research questions were the following: (1) How has the pandemic changed the lives of family carers? (2) How did government restriction measures change the availability of care-related help? (3) What other changes did families experience? Results: Results show that about one-quarter of both subsamples experienced a deterioration in their financial status. A decline in both general and mental health was also reported. Due to “lockdown”, family carers’ burden increased substantially. Utilization of care-related help decreased, and the share of those left with no help increased in both countries. Cross-country differences emerged in terms of dementia care system, severity of the first pandemic wave, and measures put in place by governments. Findings outline the weaknesses of support structures and their country-specific vulnerabilities to a worldwide pandemic. Conclusions: To better protect people with dementia in the future, it is essential to strengthen their family carers, and support structures need to be re-evaluated and re-designed. 

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The impact of severe rare chronic neurological disease in childhood on the quality of life of families—a study on MLD and PCH2

Background: Rare and severe neurological disorders in childhood not only heavily affect the life perspective of the patients, but also their caregivers and families. Objectives: The aim of this study was to investigate the impact of such diseases on the family, especially on the quality of life and life perspectives of parents, but also on the families’ everyday life, based on the model of two diseases which have been well described in recent years with respect to symptoms and course: metachromatic leukodystrophy (MLD) and pontocerebellar hypoplasia type 2 (PCH2). PCH2 is a primary severe developmental disorder, while children with MLD initially develop normally and then progressively deteriorate. Methods: Using a semi-standardized questionnaire, 43 families with children suffering from MLD (n = 30) or PCH2 (n = 19) reported data on the severity of the illness/symptoms, on family support and the care situation, as well as on the circumstances of non-affected siblings and the parents’ work situation. In addition, the quality of life of parents and general family functioning was assessed using the PedsQL™ Family Impact Module [23]. Results for the latter were compared to published data from families with children without any chronic condition using student’s t-tests for independent samples. Potential factors influencing the PedsQL™ scores were analyzed using Spearman’s rank correlation. Results: Parents of children with MLD and PCH2 reported significantly lower health-related quality of life (HRQOL) compared to parents of healthy children (P < 0.001). Mothers showed significantly poorer HRQOL (P < 0.05) and were significantly more dissatisfied with their professional development (P < 0.05) than fathers, and this was seen in relation to their child's disease. Neither the form of disease (‘primary’ symptomatic PCH2 or ‘secondary’ symptomatic MLD), nor the severity of the child’s illness (in terms of gross motor and speech function) had a specific impact on HRQOL in families. However, the time from diagnosis and advanced symptoms in the terminal disease stage were experienced as especially distressing. Conclusions: This study illustrates that MLD and PCH2 affect mothers in particular, but also the entire family. This underlines the need for personalized care and counselling of parents and families, especially following diagnosis and during the end stage in a child with a severe, rare chronic neurological disorder.

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Impact of sensitization of family caregivers upon treatment compliance among geriatric patients suffering from elder abuse and neglect

Background: Geriatric patients in various outpatient department (OPDs) have been found to agonize from elder abuse and neglect (EAN). Such suffering imposes depressive states within individuals, which in turn affects treatment compliance. The objective of this study was to evaluate the impact of sensitization (psychotherapeutic) of family caregivers (FCGs) upon two denture treatment parameters (maintenance and treatment satisfaction) among EAN patients and compare the differences in outcome with non-abused patients. Methods: A survey of completely edentulous subjects (n = 860, aged 41–80 years) provided a sampling frame of 332 EAN patients from which 150 patients (including FCGs) fulfilling the study criteria were distributed (simple random, convenient) into two groups (Group A—control, Group B—test). FCG sensitization for subjects in Group B was performed by a clinical psychologist in 2–4 short (30 min) sessions. Demographic characteristics (frequency) were measured using a self-reported questionnaire, denture maintenance was measured using a denture hygiene index (scores), and treatment satisfaction was analyzed on a 10-point visual analog scale. Relevant data were calculated for means and absolute/relative frequencies. Any difference between two groups was estimated using an unpaired t-test while the level of relationship was determined by Karl Pearson’s test at a p-value of < 0.05. Results: The results showed highest frequency (38.6%) for neglect, with elder neglect (EN) being most common (38.14% alone and 14% in combination). EN was found more if the FCG was a son (52%), in the age group (21–30 years), and with low education and low income (75%). Patients whose FCGs were counselled (Group B) demonstrated low denture plaque scores (mean = 1.38 ± 0.618), while demonstrating comparatively higher scores in six different parameters of treatment satisfaction. Differences between the two groups for both parameters were also found to be statistically significant. Conclusions: Psychotherapeutic counselling in the form of FCG sensitization brings better results of denture maintenance and treatment satisfaction. 

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Impact of relative mental illness on caregivers

Introduction: Belarus is undergoing legislative shifts towards community-based mental health care. Responding effectively to support this process requires an understanding of the experiences and challenges facing families caring for a relative affected by mental illness. Objectives: To identify how caring for a person with severe mental illness impacts on family carers, and what carers identify as their support needs. Methods: Semi-structured interviews were undertaken with 17 caregivers of people affected by severe mental illness (diagnosis of F06.8, F20, F25, F7, and/or F 84) in Belarus between March - June 2019. Results: Care-giving for a family member was usually undertaken on a full time basis with no option for respite. Whilst caring did, in cases, strengthen family solidarity, it also resulted in intensive stress and burnout, financial pressures, and high levels of family tension, exacerbated when the person living with mental illness was perceived as a potential safety risk. High levels of societal stigma meant that care-givers commonly felt unable to discuss their circumstances, travel in public spaces, or participate in community activities. Stigma also deterred carers from seeking professional support. Priorities for support amongst carers included better information, public awareness raising and sensitization, advocacy to support patient integration into social and economic life, peer support and respite for family carers, and an increase in mental health specialists. Conclusions: Caregiving affected family carers on multiple levels with predominantly negative consequences. Priorities identified by carers need to be considered and acted upon if community-based care is to become an effective option.

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The impact of psychoeducational interventions on the outcomes of caregivers of patients with heart failure: A systematic review and meta-analysis

Background: Heart failure is a global health care problem that causes a significant economic burden. Despite medical advancements, it's prognosis remains poor as many patients with heart failure experience symptoms that negatively impact Quality of Life. Caregivers are often responsible for helping and supporting family members manage their heart failure symptoms at home. In addition to managing their own medical problems and maintaining social and personal lives, significant burden and stress can occur. At present, caregivers receive little guidance or information to support them in their caregiving role. Objectives: This review aims to determine the impact of psychoeducational interventions on the outcomes of caregivers of patients with heart failure. Design: Systematic review and meta-analysis. Data source Five electronic databases: PsycINFO, Medline, CINAHL Plus, EMBASE and SCOPUS were searched from June 2007 to August 2019. Review methods The conduct and reporting of this review was based on the Cochrane Handbook for Systematic Reviews of Interventions and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The Cochrane Risk of Bias Tool was used to assess the risk of bias amongst randomised controlled trials, and the Newcastle Ottawa Scale was used to assess risk of bias in one quasi-experimental study. Results: Ten articles met the inclusion criteria, consisting of seven studies, with a total sample size of 953 participants. The pooled result from two studies, conducted in America and China, reported that psychoeducational interventions significantly reduced depression at six months' follow-up (SMD -0.82; 95% CI -1.17 to -0.47; p = 0.73, I2 =0%). The pooled result from two studies conducted in Sweden and Taiwan showed a significant improvement in heart failure knowledge at six months' follow-up (SMD 0.97; 95% CI 0.70 to 1,25; p < 0.00001, I2 =0%). Finally, pooled results from three studies conducted in Sweden, China and Taiwan found a significant improvement in Quality of Life at 3 months' follow- up (SMD 0.25; 95% CI 0.25 to 0.48; p = 0.03). The three most common intervention components included: group based educational sessions, telemonitoring and telephone support, and written resources. Conclusions: There was no specific type of psychoeducational intervention found to have a significant impact on caregiver outcomes, as interventions were heterogeneous consisting of multiple components. Further research is needed to determine the effectiveness of individual and combined components to identify the ideal intervention format and design for caregivers of patients with heart failure.

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The impact of ovarian cancer on individuals and their caregivers: A qualitative analysis

Objective: Ovarian cancer remains an understudied cancer with poor prognosis, few effective treatments and little understanding of the how individuals and their families face the challenges and uncertainty following diagnosis. This study synthesized the subjective experiences of individuals and their caregivers in the face of the uncertainty produced by the disease. Methods: Qualitative data were obtained from the Ovarian Cancer Australia 2017 Consumer Survey. An inductive thematic analysis was conducted on responses from 219 individuals with ovarian cancer and 78 caregivers. Results: Nine themes were identified from the individual's responses and seven themes from the caregivers. For both groups, the uncertainty created at diagnosis led to a cascade of complex responses. For the individuals, uncertainty gave rise to fears for the future, which were exacerbated by unmet healthcare needs or treatment‐related difficulties. For some individuals, these fears led to disruption to their lives, isolation and emotional distress. For others, helpful coping styles and social support protected them from these negative consequences. For caregivers, the processes were similar, but uncertainty predominantly led to feelings of hopelessness and “survivor guilt.” Conclusions: Our results identified processes that may guide future interventions and research targeting unmet needs and protective factors for individuals with ovarian cancer and their caregivers. Findings also suggest the potential to facilitate effective support between individuals and their caregivers.

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Impact of medical home-consistent care and child condition on select health, community, and family level outcomes among children with special health care needs

Objectives/Methods: Using the 2009/2010 National Survey of Children with Special Health Care Needs (CSHCN), we investigated the impact of medical home-consistent care and child condition on five outcomes for CSHCN (n = 32,299). Results: Models suggested that medical home-consistent care predicted increased odds of preventive services receipt, no unmet health or family support needs, ease of use of community-based services, and shared decision-making. Despite these positive effects, disparities persisted based on insurance, condition complexity, and household income. Conclusions: These findings illustrate the positive impacts of medical home-consistent care on children yet remind health professionals of the unique family circumstances that ultimately impact health and wellbeing.

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The Impact of COVID-19 Quarantine on Patients With Dementia and Family Caregivers: A Nation-Wide Survey

Background: Previous studies showed that quarantine for pandemic diseases is associated with several psychological and medical effects. The consequences of quarantine for COVID-19 pandemic in patients with dementia are unknown. We investigated the clinical changes in patients with Alzheimer’s disease and other dementias, and evaluated caregivers’ distress during COVID-19 quarantine. Methods: The study involved 87 Italian Dementia Centers. Patients with Alzheimer’s Disease (AD), Dementia with Lewy Bodies (DLB), Frontotemporal Dementia (FTD), and Vascular Dementia (VD) were eligible for the study. Family caregivers of patients with dementia were interviewed by phone in April 2020, 45 days after quarantine declaration. Main outcomes were patients’ changes in cognitive, behavioral, and motor symptoms. Secondary outcomes were effects on caregivers’ psychological features. Results: 4913 patients (2934 females, 1979 males) fulfilled the inclusion criteria. Caregivers reported a worsening in cognitive functions in 55.1% of patients, mainly in subjects with DLB and AD. Aggravation of behavioral symptoms was observed in 51.9% of patients. In logistic regression analysis, previous physical independence was associated with both cognitive and behavioral worsening (odds ratio 1.85 [95% CI 1.42-2.39], 1.84 [1.43-2.38], respectively). On the contrary, pandemic awareness was a protective factor for the worsening of cognitive and behavioral symptoms (odds ratio 0.74 [0.65-0.85]; and 0.72 [0.63-0.82], respectively). Approximately 25.9% of patients showed the onset of new behavioral symptoms. A worsening in motor function was reported by 36.7% of patients. Finally, caregivers reported a high increase in anxiety, depression, and distress. Conclusions: Our study shows that quarantine for COVID-19 is associated with an acute worsening of clinical symptoms in patients with dementia as well as increase of caregivers’ burden. Our findings emphasize the importance to implement new strategies to mitigate the effects of quarantine in patients with dementia.

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Impact of COVID-19 on LGBTQ+ Cancer Survivors' and Caregivers' Perceptions of Formal and Informal Social Support (SCI952)

Background: The COVID-19 pandemic has made it difficult for many cancer survivors and their caregivers to access support from providers and informal networks. This may be particularly true for LGBTQ+ groups, who are under-represented in oncology and palliative care research and often overlooked in clinical oncology and palliative care. Research Objectives: We sought to better understand how the pandemic is affecting LGBTQ+ cancer survivors' and caregivers' access to and perceptions of formal and informal support. Methods: Qualitative data were collected via open-ended survey items, interviews, and a focus group with LGBTQ+ cancer survivors and caregivers (n = 19). Questions assessed their perceptions of the impact of COVID-19 on support, including specific challenges for LGBTQ+ survivors and their caregivers. Interview and focus group audio data were transcribed, collated with survey responses, descriptively coded, and summarized. Results: Participants included 11 survivors and 8 caregivers (1 was both) aged 21-81 (M = 41.9); 15 were female, 3 male, and 1 nonbinary; 3 were transgender; 17 were LGBTQ+ (including 4 bisexual, 2 pansexual and 2 queer) and 2 were heterosexual (both caregiving parents). Participants described numerous concerns: 1) anxiety about inclusive care being seen as something "extra"; 2) decreased visibility; 3) potential discrimination without caregiver advocacy during visits; 4) decreased communication with providers; 5) lost opportunities for community connection; 6) lack of relevant support groups and resources; 7) a care landscape changing without meaningful input from LGBTQ+ groups. Conclusion: The pandemic may exacerbate or create new unmet support needs for LGBTQ+ cancer survivors and caregivers. Implications for Research, Policy, or Practice Providers and organizations serving survivors and caregivers should be aware that minority cohorts, including LGBTQ+ survivors and caregivers, may experience increased isolation and marginalization during the pandemic. Their feedback should be actively solicited and incorporated into pandemic-related planning to inform care.

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Impact of COVID-19 on Dementia Caregivers and Factors Associated With their Anxiety Symptoms

Background: Little is known about the family experience of caregiving for persons living with dementia (PLWD) at home during the COVID-19 pandemic. Objectives: The purpose of this study was to examine the influence of COVID-19 on concerns of current family caregivers of PLWD. Methods: Study participants were recruited from the parent study, Healthy Patterns Clinical Trial (NCT03682185). Results: Data was collected from 34 caregivers via semi-structured telephone interviews. Over 70% of the study participants reported worrying about spreading COVID-19 to the PLWD, 41% reported they had taken on additional caregiving duties for others in their family since COVID-19, and 62% reported one or more anxiety symptoms. Dementia caregivers who reported anxiety symptoms reported lower scores on functional independence of their care recipients compared to dementia caregivers who did not report anxiety symptoms (p=0.036). Conclusions: Health care professionals should be alert to the concerns expressed by dementia caregivers for their well-being during this unprecedented pandemic.

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Impact of Alzheimer’s Dementia on Caregivers and Quality Improvement through Art and Music Therapy

Background: Dementia is a general term for a series of medical conditions that affect the brain and evolve progressively. According to the literature, there are over 200 subtypes and causes of dementia, with Alzheimer’s disease (AD) being the most common in elderly people. AD is an irreversible progressive neurodegenerative condition that leads to a decline in mental function, enough to disrupt daily life. Thinking skills slowly deteriorate, which, in advanced stages, makes it impossible to perform simple tasks. Besides the change in the quality of life of AD patients and their families, there is a considerable alteration in the quality of life of their caregivers, whose health can be negatively affected by the development of mental and somatic disorders. Methods: This article reviews the literature in order to reveal the benefits of applying non-pharmacological interventions such as music and art therapy to improve quality of life. This article also aims to shed light on the impact of this disease on the caregiver’s life. Findings: Music and art therapy have produced reliable results in the treatment of patients with AD, and the best effects are related to increased socialization and the maintenance of social status.

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The Impact of a Brief Home-Based Intervention on Families with a Child with Autism Spectrum Disorder

Background: A brief intervention is described and evaluated that aimed to build and strengthen relationships for families of children diagnosed with ASD aged 12 and under. Methods: A particular focus was on socially disadvantaged parents. Parents were offered around five home visits which took place on weekdays during working hours; each lasting around 90 min. They were given individualised practical tools and support to manage their children's behaviours alongside providing a listening ear to parents' concerns. Findings: In all, 456 children and 427 families participated over a four-year period with a take-up rate of 87% of all referrals. The drop-out rate was low (4.5%) as was the proportion of missed and cancelled appointments. Parents' satisfaction ratings were high and most found the number of sessions provided was 'just right'. Children improved in their personal care, had less difficulty with change, showed less anger and had fewer meltdowns. Parents reported being less stressed, not feeling so down and managing their child better. Conclusions: The evaluations suggested that a brief home-based intervention is a viable and effective means of providing personalized, post-diagnostic support to parents at periodic intervals, although socially disadvantaged families may require additional assistance beyond managing their child's ASD. The project also highlighted broader issues that impede effective support for families. 

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Illness as Experienced by Parents of Children With End-Stage Renal Disease: The "Ill Unit"

Objectives: The purpose of this study is to shed light on the experience of parents of children who suffer from various stages of renal failure. Methods: Semistructured qualitative interviews conducted with 12 parents were analyzed using the interpretative phenomenological analysis method. Findings: Eight themes were identified and organized into two superordinate themes: intrasubjective experience and intersubjective experience. Based on our analysis, we argue that the illness is experienced as a mental system extending beyond the space and boundaries of the child's body to include his or her parents which we refer to as the ill unit. Conclusions: We have borrowed Winnicott's concept of primary maternal preoccupation in order to emphasize the role and position of parents of chronically ill children. Consequently, we propose a relational perspective in which psychological support should be delivered to the ill unit (parents and child).

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Identifying the Unmet Supportive Care Needs, with Concomitant Influencing Factors, in Family Caregivers of Cancer Patients in China

Objective: The objective of the study is to assess the unmet needs of cancer caregivers and to identify the possible predictors of their supportive care needs in China. Methods: This multicenter, cross-sectional study enrolled 449 cancer patients' family caregivers' dyads. Patients provided general information and Karnofsky performance status (KPS); caregivers provided general information and completed a survey of Chinese version of the Supportive Care Needs Survey-Partners and Caregivers Scale. The independent samples t-test, one-way analysis of variance, and multiple stepwise regression were used to analyze the factors that influence the needs of caregivers. Results: A proportion of caregivers who had no needs were 5.6%. A proportion of caregivers with ≥ 5 moderate or high unmet needs and with ≥ 10 moderate or high unmet needs were 77.7% and 63.2%, respectively. Healthcare services and information needs and communication and relationship needs were the most prominent areas of caregivers' unmet needs. The item "Finding out about financial support and government benefits for you and/or the person with cancer" was the highest level of unmet needs at 78.6%. The level of unmet needs was related to the patient's physical function (KPS score), caregiver's educational levels, financial burden of healthcare, as well as the level of burden related to caregiving (working status, caring for others, caregiving experience, and total caregiving time). Conclusions: The level of unmet needs of family caregivers of cancer patients in China was higher. In clinical practice, more attention should be paid to family caregivers who take care of the patient with poor physical function, those who are highly educated, faced with higher financial burden of healthcare, and are currently working, as well as those who need to take care of others, spend more time caregiving, and have no caregiving experience.

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ICBT program for improving informal caregiver well-being: A qualitative study

Background: Informal caregivers represent an important and vulnerable part of the society. They can experience negative psychological symptoms, such as depression and anxiety. Internet-based cognitive behavioural therapy (ICBT) is a promising psychological support option that could be effective in reducing informal caregiver burden as well as improving psychological well-being. Qualitative studies are valuable for gaining insights into participant experiences of using ICBT. Objective: The main aim of this study was to explore informal caregiver experiences and hence acceptability and feasibility of the transdiagnostic ICBT program aimed at reducing informal caregiver burden and increasing the quality of life. Methods: Following a strategic sampling procedure, 23 informal caregivers were recruited from previous randomized controlled trial for informal caregivers in Lithuania. Participants were interviewed over phone, using semi-structured interview questions. Interviews were analysed using a thematic analysis approach. Results: Four themes and a total of 10 sub-themes were generated: I A program as a means of change (Convenience and applicability of the format and materials; Ability to focus on own needs; Opportunity for communication), II Suggestions for the program (Including live support; Tailoring materials and format; Providing with more time and resources), III Driving personal and situational forces (Developing acceptance and adjustment over time; Being proactive and/or receiving support) and Hindering situational factors (Deterioration and unpredictability of the care-receivers health; Lacking external support and opportunities for respite). Conclusions: Most of the informal caregivers were found to be satisfied with the program's format and materials as well as the communication with the therapist via a message function in the program. Some suggestions were made regarding implementation of the live support option. Also, suggestions regarding possibility for tailoring the program's content. Lastly, several personal and situational factors were identified as important in affecting informal caregiver well-being. We conclude that ICBT has potential in reducing informal caregiver burden and improving psychological health. Further research trials are warranted for evaluating both, the effectiveness and the feasibility of the program. 

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The Me in We dyadic communication intervention is feasible and acceptable among advanced cancer patients and their family caregivers

Background: Advanced cancer affects the emotional and physical well-being of both patients and family caregivers in profound ways and is experienced both dyadically and individually. Dyadic interventions address the concerns of both members of the dyad. A critical gap exists in advanced cancer research, which is a failure of goals research and dyadic research to fully account for the reciprocal and synergistic effects of patients’ and caregivers’ individual perspectives, and those they share. Aim: We describe the feasibility and acceptability of the Me in We dyadic intervention, which is aimed at facilitating communication and goals-sharing among caregiver and patient dyads while integrating family context and individual/shared perspectives. Design: Pilot study of a participant-generated goals communication intervention, guided by multiple goals theory, with 13 patient-caregiver dyads over two sessions. Setting/participants: Patients with advanced cancer and their self-identified family caregivers were recruited from an academic cancer center. Dyads did not have to live together, but both had to consent to participate and all participants had to speak and read English and be at least 18 years or age. Results: Of those approached, 54.8% dyads agreed to participate and completed both sessions. Participants generated and openly discussed their personal and shared goals and experienced positive emotions during the sessions. Conclusions: This intervention showed feasibility and acceptability using participant-generated goals as personalized points of communication for advanced cancer dyads. This model shows promise as a communication intervention for dyads in discussing and working towards individual and shared goals when facing life-limiting or end-of-life cancer.

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“It’s Like Juggling, Constantly Trying to Keep All Balls in the Air”: A Qualitative Study of the Support Needs of Working Caregivers Taking Care of Older Adults

Background: Many informal caregivers of older adults combine their caregiving tasks with a paid job. Adequate support is important to enable them to combine paid work with caregiving, while maintaining their health and wellbeing. To date, however, knowledge about working caregivers’ support needs is fragmented. This study, therefore, aimed to obtain more insight into the support needs of working caregivers of older adults. Methods: We conducted six online semi-structured focus group interviews with in total 25 working caregivers of older adults living at home. Data were complemented with information from seven working caregivers participating in the study’s advisory board. Data were analyzed using inductive and deductive thematic analysis. Findings: Six themes related to working caregivers’ needs were identified: (1) Recognition of caregivers, including the challenges they face; (2) Attention for caregivers’ health, wellbeing and ability to cope; (3) Opportunities to share care responsibilities; (4) Help with finding and arranging care and support; (5) Understanding and support from the work environment; (6) Technological support tailored to the needs and capacities of caregivers and older adults. To address these needs, working caregivers suggested several options in multiple domains of life (i.e., work, home and social life, care environment, personal health and wellbeing). Conclusions: To successfully support them, a multi-faceted effort, involving actors from multiple settings, is needed.

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eTRIO trial: study protocol of a randomised controlled trial of online education modules to facilitate effective family caregiver involvement in oncology

Background: Informal family caregivers play a crucial role in cancer care. Effective caregiver involvement in cancer care can improve both patient and caregiver outcomes. Despite this, interventions improving the caregiver involvement are sparse. This protocol describes a randomised controlled trial evaluating the combined effectiveness of novel online caregiver communication education modules for: (1) oncology clinicians (eTRIO) and (2) patients with cancer and caregivers (eTRIO-pc). Methods and analysis: Thirty medical/radiation/surgical oncology or haematology doctors and nurses will be randomly allocated to either intervention (eTRIO) or control (an Australian State Government Health website on caregivers) education conditions. Following completion of education, each clinician will recruit nine patient–caregiver pairs, who will be allocated to the same condition as their recruiting clinician. Eligibility includes any new adult patient diagnosed with any type/stage cancer attending consultations with a caregiver. Approximately 270 patient–caregiver pairs will be recruited. The primary outcome is caregiver self-efficacy in triadic (clinician–patient–caregiver) communication. Patient and clinician self-efficacy in triadic communication are secondary outcomes. Additional secondary outcomes for clinicians include preferences for caregiver involvement, perceived module usability/acceptability, analysis of module use, satisfaction with the module, knowledge of strategies and feedback interviews. Secondary outcomes for caregivers and patients include preferences for caregiver involvement, satisfaction with clinician communication, distress, quality of life, healthcare expenditure, perceived module usability/acceptability and analysis of module use. A subset of patients and caregivers will complete feedback interviews. Secondary outcomes for caregivers include preparedness for caregiving, patient–caregiver communication and caring experience. Assessments will be conducted at baseline, and 1 week, 12 weeks and 26 weeks post-intervention. Ethics and dissemination: Ethical approval has been received by the Sydney Local Health District Human Research Ethics Committee (REGIS project ID number: 2019/PID09787), with site-specific approval from each recruitment site. Protocol V.7 (dated 1 September 2020) is currently approved and reported in this manuscript. Findings will be disseminated via presentations and peer-reviewed publications. Engagement with clinicians, media, government, consumers and peak cancer groups will facilitate widespread dissemination and long-term availability of the educational modules.Trial registration numberACTRN12619001507178.

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I Was Not Expecting That! Ethical Dilemmas in Alzheimer’s disease and Alzheimer’s Disease Related Dementia Caregiving Research

Background: Alzheimer’s disease and Alzheimer’s disease Related Dementias (AD/ADRD) affect all aspects of life and relationships for those involved. Female family caregivers constitute an informal (unpaid) and critical workforce who provide 83% of the care for persons living with AD/ADRD in the community settings (Alzheimer’s Association, 2021). In 2020, U.S. informal caregivers provided an additional 400 million hours of unpaid care valued at $244 billion (18.6 billion hours) in comparison with 2017 (Alzheimer’s Association, 2021). Consequently, family caregivers of persons with AD/ADRD report a loss of mental, emotional, physical health 50% more often than other caregivers (Alzheimer’s Association, 2021). Family caregiving of a loved one with AD/ADRD is often counterintuitive and based on trial and error. Caregivers cannot subjectively understand their family members’ challenges with AD/ADRD. Thus, either partner of the AD/ADRD caregiving dyad may be at risk for injury or harm. Family dementia caregiving is often challenging due to the neurocognitive deficits associated with dementia, especially in later stages. The typical slow progressive nature of AD/ADRD often obscures a family dementia caregiver’s ability to identify important functional neurocognitive changes.

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"I was always struggling": Caregivers' experiences of transitioning a child from oral to long‐term non‐oral feeding at an out‐patient hospital clinic in South Africa

Background: As the prevalence of paediatric dysphagia increases, the need for long‐term non‐oral feeding has also increased. Despite these developments, little is known about caregiver experiences of transitioning a child onto long‐term non‐oral feeds, and the factors which influence the process of decision‐making and the provision of consent to do so. This paper aims to explore these factors. Methods: Semi‐structured interviews were conducted with nine participants recruited from the multidisciplinary out‐patient non‐oral feeding clinic at a hospital. Interviews explored caregiver experiences of decision‐making and the process of providing consent when transitioning their child to non‐oral feeds, as well as the support structures available to the caregivers. Interviews were audio recorded and transcribed, then analyzed using thematic analysis (Braun & Clarke, 2013) and content analysis (Neuendorf, 2016). Results: Challenges to care and quality of life, access to information and culturally relevant counselling, and the involvement of family members and significant others emerged as prominent themes. Findings suggest that quality of life was the most common motivating factor for transitioning a child to non‐oral feeding methods. Several participants suggested that support and information sharing via digital platforms were both useful and effective. Implications: The findings highlight caregivers' needs for improved access to information and social support. The findings hold implications for training of healthcare providers working in similar contexts and for models of service delivery which ensure that family‐centred intervention can be delivered in culturally and contextually relevant ways. With widespread access to smartphones, counselling should include digital messaging as a way of providing support and information sharing. Future research should focus on the complexities of counselling and the process of informed consent in settings impacted by diverse cultural, contextual and linguistic barriers, as well as the potential value of mobile health (mhealth) in ensuring improved health outcomes.

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'I want to make myself useful': the value of nature-based adult day services in urban areas for people with dementia and their family carers

Background: Nature-based adult day services (ADSs) in urban areas are relatively new services in the Netherlands. Since knowledge about these services is still scarce, this study aimed to elucidate their value for people with dementia and their family carers in terms of health and wellbeing. Methods: We interviewed 39 people with dementia attending nature-based ADSs in urban areas and their family carers, and 17 providers of these services. Results: Respondents indicated that nature-based ADSs in urban areas positively affected the health and wellbeing of people with dementia. According to them, these services support contact with nature and animals, activity engagement, physical activity, structure, social interactions, healthy eating, a sense of meaning in life and a focus on normal daily life. Respondents further indicated that these services stimulate respite, reassurance and maintenance of family carers' own activities and social contacts. Conclusions: We conclude that nature-based ADSs in urban areas have a wide range of benefits that might affect the health and wellbeing of people with dementia and their family carers. Worldwide, demand is growing for innovative practices in dementia care. It is therefore worthwhile monitoring the development of dementia care innovations, such as nature-based ADSs, and for countries to exchange lessons learned from these services.

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“I can’t live like that”: the experience of caregiver stress of caring for a relative with substance use disorder

Background: The impact of addiction extends beyond the individual using a substance. Caring for an individual with addiction creates persistent stressful circumstances that cause worry, anger, depression, shame, guilt, anxiety, and behavioral problems within the family unit. The aim of the study: The paper aims to explore the experiences of caring for a relative with a substance use disorder (SUD) and self-care strategies caregivers employ. Methods: The study adopted an exploratory qualitative design. To be included in the study, participants were required to have a relative with a (SUD) disorder and not be actively using the substance themselves. Individual interviews were conducted to gather their experiences, meanings, and how they made sense of caring for a relative with a SUD. Results: Twenty one participants were involved in the study, of which 17 were women, and four were men of which there had a sister, four had a brother, eight had a parent, six had a dependent, and one participant had a grandparent with a SUD. Four themes, whose overarching focus is the pains of living and caring for a family with a SUD, caused the participants and how the participants mitigated these experiences. Conclusion: The stress associated with caring for individuals with a SUD impacts the caregiver’s physical and mental health. Specific care modalities targeting caregivers need to be developed to address the health impact and to support self-care.

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How Employers and States Can Support the Essential Workforce of Family Caregivers

Family caregiving is a shared experience across people of all age groups, cultures, incomes, and education levels in the United States. Roughly 41 million Americans are serving as a caregiver of an older adult. Many family caregivers, sometimes called informal or unpaid caregivers, are relatives, friends, and neighbors who provide ongoing assistance to adults aged 50 and older with health or functional needs.

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Home-based occupational therapy for adults with dementia and their informal caregivers: A systematic review

Background: People with dementia require tailored interventions to support participation and performance in their desired occupations, and informal caregivers need interventions that reduce caregiving burden to enable them to continue with their roles. Objective: This systematic review investigated whether home-based occupational therapy interventions for adults with dementia and their informal caregivers optimized care recipients’ performance of daily occupations and reduced caregiving burden and improved caregivers’ sense of competence. Methods: Eight databases were searched from 1946 to November 2019 using MeSH terms, keywords, and subject headings as appropriate for each database. Inclusion criteria were quantitative studies investigating the effects of home-based therapy provided by a qualified occupational therapist for adults with dementia and their informal caregivers. Study selection, data collection, and methodological quality assessments using the Critical Appraisal Skills Programme criteria tool were performed independently by two reviewers. Data analysis involved a two-stage process. Findings: From 1,229 articles identified through searches, 970 titles and abstracts were screened for eligibility after removal of duplicates. Twenty studies reported in 22 articles were included. Moderate evidence supported interventions provided jointly for adults with dementia and their informal caregivers using a combination of intervention strategies. Included studies demonstrated high risk of bias, particularly in blinding of outcome assessments. Conclusions and Relevance: Combining individualized interventions framed in client-centeredness can enhance occupational performance for adults with dementia, reduce caregiving burden, and improve informal caregivers’ sense of competence. Further research on leisure and home management occupations is warranted. What This Article Adds: The findings provide evidence supporting the effectiveness of home-based occupational therapy for people with dementia and their informal caregivers for consideration by funders of services. 

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Home Visit Based Mindfulness Intervention for Vietnamese American Dementia Family Caregivers: A Pilot Feasibility Study

Background: Healthcare disparities continue to exist among the Vietnamese American (VA) community and many factors (e.g., fear of social stigma) deter family caregivers of persons with dementia (PWD) from seeking assistance. Purpose: To pilot-test a language-specific and culturally appropriate mindfulness intervention to improve dementia VA family caregiver well-being. Methods: Bilingual, trained research assistants administered a mindfulness exercise (i.e., deep breathing) to family caregivers and provided continuous support and care resources through weekly home visits for a month. Weekly surveys measured changes in emotion, feelings of connectedness to the PWD, and mood (i.e., happiness) before and after the intervention. Results: A total of nine VA family caregivers of PWD participated in this pilot study. Positive affect showed an increasing trend (Mpre = 16.0 (SD = 3.48), Mpost = 17.1 (SD = 3.06)) and negative affect showed a decreasing trend (Mpre = 6.44 (SD = 3.31), Mpost = 5.22 (SD = 0.359)). Happiness showed an increasing trend (Mpre = 4.30 (SD = 0.767), Mpost = 4.44 (SD = 0.873)). Conclusions: These findings suggest that a home-based dementia family caregiver intervention with mindfulness exercises may potentially increase positive affect and decrease negative affect in Vietnamese American family caregivers of PWD. Similar interventions may help reduce caregiver burden in dementia family caregivers of other cultures.

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Home and Parent Training Strategies for Pediatric Feeding Disorders: The Caregivers’ Perspective

Background: Twenty to 45% of the general pediatric population experience feeding problems. When children with disabilities exhibit feeding problems, they are more likely to develop maladaptive mealtime behaviors that may lead to poor nutrition. Home training to help treat a child’s feeding delay or disorder is a vital component of feeding treatment and supports holistic, family-centered treatment models. It is important for occupational therapists working with this population to understand the impact of these behaviors on individual and family functioning. Method: This quantitative study examined caregivers’ perspectives of the training families receive to support their child’s feeding delay or disorder, and how family mealtimes may be affected. One hundred and eight participants completed an online survey using primarily Likert scale questions. Results: Caregivers report that (a) they are receiving current and evidenced-based interventions; (b) they feel supported, yet feel they need more support; (c) family relationships are adversely affected by a child’s feeding challenges; (d) caregivers desire to connect with other caregivers of children with feeding delays or disorders; and (e) they need stress management and coping strategies. Conclusion: Feeding treatment is strengthened with more family-focused topics like family relationships and interactions, caregiver burden and stress management, and increased caregiver support.

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Higher levels of unmet support needs in spouses are associated with poorer quality of life – a descriptive cross-sectional study in the context of palliative home care

Background: Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. Objectives: This study aims to explore associations between family caregivers’ support needs and quality of life when caring for a spouse receiving specialized palliative home care. Methods A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness – Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses. Results: Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient’s life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient’s condition, and the family caregiver’s own physical and emotional health. Conclusion: With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers’ QoL by revealing their problems and concerns. Thus, tailored support is needed.

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Heart Failure Caregiver Self-Care: A Latent Class Analysis

Background: Little is known about heart failure (HF) caregiver self-care. Methods: This article reports a secondary analysis of data from a cross-sectional, descriptive study involving 530 HF caregivers. A three-step latent class mixture model identified HF caregiver classes at risk for poor self-care and examined the relationship between the identified self-care classes and caregiver burden and depression. Caregivers completed online surveys on self-care, caregiver burden, depression, problem-solving, social support, and family function. Results: Caregivers were 41.39 (±10.38) years old, 78.3% Caucasian, and 50.9% men. Three classes of HF caregivers (24% Low-Risk, 24.9% Moderate-Risk, 51.1% High-Risk) were identified. High-Risk caregivers had the worst self-care and the lowest levels of social support, problem-solving, and family function. Moderate-Risk caregivers were the most experienced and had the best self-care yet had the most comorbidities. High-Risk caregivers reported more caregiver burden and depression. Conclusions: "At-risk" caregivers may benefit from self-care and support programs, but more research is needed.

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Health-Related Quality of Life and Family Functioning of Primary Caregivers of Children with Cerebral Palsy in Malaysia

Background: Caregiving for children with cerebral palsy (CP) has proved to negatively impact on the physical and psychological well-being of their primary caregivers. Objective: The aim of the current study was to examine the overall impact of caregiving for children with CP on the primary caregivers’ health-related quality of life (HRQOL) and family functioning, and to identify potential factors associated with primary caregivers’ HRQOL and family functioning. Methods: The cross-sectional study involved a total of 159 primary caregivers of children with CP with a mean age of 42.8 ± 8.4 years. Demographic data and information on the physical and leisure activities of the primary caregivers were collected, and their quality of life (QOL) was measured based on the self-reported Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM). Results: Primary caregivers in the current study have shown good HRQOL and family functioning, with scores of 82.4 and 85.3 out of 100, respectively. Through multiple linear regression analyses, the mother’s level of education, family monthly income, sleeping problems in children with CP, and the existence of children with other types of disability have been identified as factors contributing to HRQOL and family functioning. Conclusions: The findings help set out the course for stakeholders to establish action to enhance the QOL of primary caregivers.

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Health, Work, and Social Problems in Spanish Informal Caregivers: Does Gender Matter? (The CUIDAR-SE Study)

Background: The aim of this study was (i) to analyze problems faced by informal caregivers in three areas of their life: health, work and finances, and family and social relationships, (ii) to investigate the main determinants of these problems, and (iii) to explore differences between men and women. Methods: The study population consisted of people aged ≥18 years living in a family home who were providing unpaid care to a dependent person in the same or another home and who were registered as caregivers with the Primary Health Care District of Granada or the Provincial Council of Gipuzkoa. Several logistic regression models were built to analyze the likelihood of caregivers experiencing health, work-related, or social problems as a result of their caregiving responsibilities. Results: Informal female caregivers were more likely to experience problems attributed to caregiving than their male counterparts, particularly in the areas of health and work. Additional factors associated with an increased likelihood of problems were low perceived social support, performance of ungratifying tasks, and fewer years as a caregiver. Conclusions: Informal caregivers in Spain face significant problems as a result of their caregiving duties, and the impact on men and women is different. Policies and interventions to mitigate the negative effects of unpaid caregiving should incorporate differential strategies to meet the specific needs of male and female caregivers in different caregiving contexts.

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Health, wellness, and safety concerns of persons with moderate-to-severe traumatic brain injury and their family caregivers: a qualitative content analysis

Background: Persons with moderate-to-severe traumatic brain injury (TBI) face issues with health, wellness, and safety that affect their ability to independently manage their care, even for individuals who are ≥75% independent in activities of daily living. These issues often lead to increased family involvement in managing the person's condition after discharge home. Methods: We explored health, wellness, and safety concerns after discharge home from inpatient rehabilitation from the perspectives of persons with TBI who are ≥75% independent in activities of daily living and their family caregivers. We interviewed 27 persons with TBI and family caregivers and used conventional content analysis to analyse the data. Seven themes related to health, wellness, and safety encompassed participants' experience. Findings: Health themes included: (1) attempting to manage medications and (2) navigating mental health difficulties. Wellness themes included: (1) working to stay physically active, (2) dealing with sleep and sleeplessness, and (3) adjusting to changing social relationships. Safety themes were: (1) addressing mobility challenges and (2) compensating for complications with cognitive functioning. Findings can guide the development of tools, supports, and resources to promote health, wellness, and safety of persons with TBI as they recover after discharge home. Findings on numerous concerns related to health, wellness, and safety suggest the need for implementation or development and testing of tools, supports, and resources to promote health, wellness, and safety of persons with traumatic brain injury as they recover after discharge home. Conclusions: Our findings can be used to educate healthcare providers and increase awareness of the nuanced challenges patients and families face after discharge home. Findings can also be used by providers to educate patients and families on realistic expectations for life after discharge.

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Health service experiences and preferences of frail home care clients and their family and friend caregivers during the COVID-19 pandemic

Objective: The COVID-19 pandemic has brought about a major upheaval in the lives of older adults and their family/friend caregivers, including those utilizing home care services. In this article, we focus on results from a qualitative component added to a pragmatic randomized controlled trial that focuses on the experiences of our study participants during COVID-19. Methods: A total of 29 participants responded to the COVID-19 related questions focused on their health services experiences and preferences from March-June 2020 including 10 home care clients and 19 family/friend caregivers in the provinces of Ontario and Nova Scotia, Canada. Results: Many participants were affected drastically by the elimination or reduction of access to services, highlighting the vulnerability of home care clients and their caregivers during COVID-19. This took an emotional toll on home care clients and increased the need for family/friend caregiver support. While many participants expressed reduced desire to utilize residential long-term care homes, some caregivers found that passive remote monitoring technology was particularly useful within the COVID-19 context. Conclusions: Our results provide important insights into the ways the older adults and their caregivers have been affected during the COVID-19 context and how to better support them in the future.

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Health promotion in adults with Down’s syndrome: Experiences of caregivers

Background: Individuals with Down’s syndrome rely on caregivers to support lifestyle behaviour change. It is therefore important to understand how caregivers put health recommendations into practice. Methods: Through conducting semi-structured interviews, the present study sought to understand the facilitators and barriers that caregivers faced when implementing health promotion advice. Five interviews were conducted with paid support staff and four with family carers of individuals attending a specialist multidisciplinary Down’s syndrome health promotion screening clinic. Findings: Three main themes emerged in their accounts, including active promotion of weight management by caregivers, benefits of working practices such as record keeping and communication channels and the importance of having access to social care services and recreational activities. Conclusions: These findings have important implications for professionals working in specialised healthcare settings who may be able to tailor communication and services to better meet the needs of individuals with Down’s syndrome and their caregivers.

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Health care staff's strategies to preserve dignity of migrant patients in the palliative phase and their families. A qualitative study

Aims: To determine registered nurses' and care assistants' difficulties and strategies for preserving dignity of migrant patients in the last phase of life and their families. Background: Preserving dignity of patients in a palliative phase entails paying attention to the uniqueness of patients. Migrant patients often have particular needs and wishes that care staff find difficult to address, or meet, and hence the patient's dignity might be at stake. Methods: We performed five focus group discussions with care staff and one with key figures with diverse ethnic backgrounds in the Netherlands (2018–2020). Thematic analysis was used. Results: Care staff creatively safeguarded the patient's dignity in daily care by attending to personal needs concerning intimate body care and providing non‐verbal attention. Care staff had difficulties to preserve dignity, when the patient's family engaged themselves in the patient's choices or requests. According to care staff, the interference of family impeded the patient's quality of life or threatened the patient's dignity in the last days, or family member's choices (seemingly) prevailed over the patient's wishes. Care staff safeguarded dignity by catering to cultural or religious practices at the end of life and employing cultural knowledge during decision making. Key figures emphasized to make decisions with patient and family together and to listen more carefully to what patients mean. Bypassing family was experienced as harmful, and repetitively informing family, about, for example, the patient's disease or procedures in the nursing home, was experienced as ineffective. Conclusion: To preserve the patient's dignity, attention is needed for relational aspects of dignity and needs of family, next to patients' individual needs. Impact: Care staff should be supported to employ strategies to engage family of migrant patients, by, for example, acknowledging families' values, such as giving good care to the patient and the importance of religious practices for dignity.

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Health Care Professionals' Experiences as Family Caregivers During Intra-Hospital Transitions

Background: Family caregivers are often perceived as inexperienced family members assuming caregiving duties. However, health care professionals may also find themselves in an informal caregiving role as older adult relatives or friends are hospitalized and experience intra-hospital transitions. The purpose of the current study was to describe the experiences of health care professionals assuming the role of informal caregiver during intra-hospital transitions. Methods: As part of a larger study, a separate analysis of six semi-structured interviews from family caregivers with health care backgrounds was considered. Findings: Health care professionals as family caregivers (HCP-FCs) reported they sought inclusion in the care provided, they had unique insider perspectives, and experienced role struggle between health care professional and new informal caregiver. Moreover, HCP-FCs reported increased role struggle during interactions with colleagues and fellow health care professionals. Conclusions: Understanding of the role of HCP-FCs during transitions in care is necessary to develop interventions supportive of patient- and family-centered care. 

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Grieving in a Pandemic: How COVID-19 Has Impacted Bereavement for Family Caregivers of Hospice Cancer Patients (SCI948)

Objectives: 1. Analyze 1-4 aspects of bereavement that have been impacted by COVID-19 for family caregivers of advanced cancer hospice patients. 2. Evaluate the strategies implemented by family caregivers to overcome isolation and maintain connectedness during the Coronavirus pandemic. Background: As Coronavirus has spread to the US, it has changed family caregivers' hospice experiences including bereavement. To examine the impact of a global pandemic on connectedness and isolation in bereavement among hospice family caregivers using automated phone diaries. Aim: We examined phone diaries of bereaved hospice family caregivers of cancer patients from a larger multi-site longitudinal study for COVID and non-COVID related references to isolation and connectedness. Methods: Participants were asked to complete daily phone diaries through an automated system from the time they consented to 6 months after the patient's death. Recordings were selected between March 13 and May 15, 2020 from bereaved caregivers. Summative content analysis using deductive codes was conducted to examine diaries for physical/social isolation and connection. Isolation was defined as having no other person in close physical or social contact during bereavement, while connection was defined as feeling attached to others during bereavement. Results: Bereaved caregivers' diaries (N=6; bereavement range=2-7 months) were analyzed. Each caregiver completed audio diaries over the bereavement period (range=1 to 42). Of the 59 diaries, 32 (54.24%) made reference to the coronavirus pandemic. Coronavirus references were mentioned by all 6 participants. COVID-related connection was identified 15 times (25.42%), while COVID-related isolation was identified 32 times (54.24%). Non-COVID related connection was identified 20 times (62.5%), while non-COVID related isolation was coded only twice (13.33%). Conclusions and implications: Findings from this study suggest COVID-related social isolation was integral to the bereavement experiences of family caregivers. However, despite the pandemic, caregivers expressed maintaining connectedness to others. This study has implications for hospice support services for bereaved caregivers during the pandemic.

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Grieves And Struggles Of Family Caregivers Providing Care For Bedridden Elderly Patients Affected By Chronic Degenerative Diseases

Objective: To understand grieves and struggles of family caregivers providing care for bedridden elderly patients affected by chronic degenerative diseases. Methods: This cross-sectional study was developed following the guidelines of the clinical-qualitative method. The sample was composed of 10 female family caregivers of bedridden elderly patients affected by chronic degenerative diseases in a city in the interior of Minas Gerais, Brazil. The sample size was determined by data saturation. The instruments used included semi-structured interviews and a field diary. The audio-recorded interviews were transcribed verbatim and submitted to content analysis. The field diary provided contributions to the organization of categories, conferring a more accurate context. Results: The participants experienced two types of grief, one for the loss of a “healthy family member” and the other for the “announced death” of this person. Additionally, the participants faced two main struggles: overcoming (objective and subjective) fatigue and becoming fully capable of performing their roles. Conclusion: The family caregivers of bedridden elderly patients affected by chronic degenerative diseases experience grieves and struggles that should be taken into account from the beginning of the care process through mental health actions intended to meet their needs. 

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Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives' Survey within Seven Countries

Background: Recognized disparities in quality of end‐of‐life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries. Materials and Methods: A postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i‐CODE) questionnaire 6–8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient's last days of life. Results: Of 1,683 potential participants, 914 i‐CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their family member with dignity and respect "always" or "most of the time"; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3–17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase. Conclusion: This is the first study assessing quality of care for dying cancer patients from the bereaved relatives' perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: NCT03566732). Implications for Practice: Previous studies have shown that bereaved relatives' views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement. Disparities exist in the quality of end‐of‐life care. This article assesses the quality of care for dying cancer patients, as perceived by bereaved relatives, within hospitals in seven European and South American countries.

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Going inside the relationship between caregiver and care‐receiver with Amyotrophic Lateral Sclerosis in Italy, a Grounded Theory study

Background: People with amyotrophic lateral sclerosis become dependent on caregivers for daily activities and to perform self‐care activities at home. The family caregiver has an important role in the care. The patient decides and controls care but depends on the caregiver to implement self‐care behaviours. The quality of caregiver–patient relationships could influence clinical outcomes, as it occurs in other illnesses, so the aim of this study was to investigate the relationship between the Amyotrophic Lateral Sclerosis patients and their family caregiver and how it impacts care, and patient and caregiver outcomes. Methods: We interviewed 22 patients/caregivers in a Neuromuscular Clinical Center in the South of Europe, between July and October 2018. A Grounded Theory approach was used, comprising line by line 'initial coding', memos writing, 'focused coding', advanced memos and categories definition. Findings: From the interviews three main categories emerged: 'reciprocity', 'loving to care' and 'changing to care' and four secondary categories: 'having support', 'sharing suffering', 'protecting each other' and 'thinking positive'. A stable and calm relationship between patient and caregiver, characterised by reciprocity, mutual help and affection affected patient self‐care provided at home and the caregiver burden. The concept of mutuality seems to describe this relationship, despite the patient's dependence on the caregiver. The relationship with health professionals and educational interventions could influence the quality of the relationship. Conclusions: Further studies are needed to describe the quality of the relationship in this dyad, to investigate the presence of mutuality and how it affects patient and caregiver outcomes.

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"Going Home [Is] Just a Feel-Good Idea With No Structure": A Qualitative Exploration of Patient and Family Caregiver Needs When Transitioning From Hospital to Home in Palliative Care

Context: Hospital-to-home transitions, particularly at the end of life, can be challenging for patients and their family caregivers. Therefore, there is a need to better understand gaps in expectations and experiences of these transitions. Theory can inform the creation of an intervention aimed at improving the hospital-to-home transition. Objectives: 1) Explore patients' and caregivers' expectations and subsequent experiences of the hospital-to-home transition while receiving palliative care, and 2) build a substantive grounded theory to enhance the understanding of hospital-to-home transitions from the patient and caregiver perspective. Methods: Longitudinal, prospective qualitative study with semistructured interviews at hospital discharge and three to four weeks after discharge home. We recruited adults receiving inpatient palliative care who were being discharged to home-based palliative care, and their family caregivers from two academic health centers in Toronto, Canada. Thirty-nine participants: 18 patients, 7 caregivers, and 7 patient-caregiver dyads participated. We conducted 52 interviews. We conducted a grounded theory qualitative study. Results: Through examining the expectations and subsequent experiences of the transition, and exploring the gaps between them, we identified various transitions needs: health and well-being needs, and practical needs (i.e., transportation, setting up the home for care, care providers in the home). Several enablers and disablers modified the likelihood of needs being met (e.g., caregiver role, education on symptom management, uncertainty, financial resources). Conclusion: Our substantive grounded theory highlighted potentially measurable constructs that can be further tested. Future interventions should target the enablers/disablers to ensure health and well-being and practical needs are met in the transition. 

 

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Getting back or giving back: understanding caregiver motivations and willingness to provide informal care

Background: Informal caregivers are those providing care, which exceeds that which is typically provided, to a relative or friend with care needs. Informal caregiving constitutes the backbone of a society’s care supply and with ageing populations the need for informal care is growing. We know little as to why caregivers start caring and continue doing so, yet understanding of motivations and willingness to provide care is important if informal caregivers are to be supported. However, both motivations and willingness are inconsistently defined making it difficult to compare the empirical findings that do exist. Methods: This paper reviews and synthesises thinking about the theoretical constructs of motivations to provide care and willingness to perform informal care, and presents those in relation to existing theoretical and empirical literature. Results and Conclusions: Theoretical reflections based on various motivational frameworks and available empirical data are presented to illustrate that: caregiving motivations should be conceptualised as multifaceted and multiply determined; intrinsic and extrinsic motivations should not be treated as antagonistic and can occur simultaneously; the commonly applied model of extrinsic/intrinsic motivations is oversimplified and omits consideration of the diversity of caregiver motives; other motivational models can be discerned in the context of the empirical research; there are differences between motivations and willingness to provide care with the latter being more consequent to the motives; both should be considered dynamic in nature; and finally, that the two constructs may not inevitably lead to actual caregiver behaviour. The implications of these theoretical reflections for methodology and research as well as their relevance for practice and policy are indicated. 

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Gendered experiences of providing informal care for older people: a systematic review and thematic synthesis

Background and purpose: The caregiving’s impact on informal carers’ quality of life and gender-based stereotypes make older individuals’ informal care a complex process for which our knowledge is still limited. The purpose of this review is to identify how gender relates to informal carers’ experiences of providing care for people aged 60 years and over with mental and physical health needs by synthesising the available empirical data published between 2000 to 2020. Design and methods: The systematic method for reviewing and synthesising qualitative data was performed using the PRISMA checklist and ENTREQ statement. The CASP tool was used to examine the quality of the included papers. Thematic synthesis was used as the methodological framework. Results: This review produced two analytical themes, the impact of gender on the caregivers’ labour and negotiating gender identity with self, society, and cultural norms. While informal caregivers share motivators, a linkage between traditional gender stereotypes impacts caregiving burden and coping strategies. Informal carers’ experiences entail a constant pursuit of self-agency after acquiring the caregiver role. Cultural values and their intersection with gender appear to influence caregivers’ healthy adjustment into their new caregiving identities. The flexibility to move beyond gender boundaries could mediate caregivers’ negotiations between self and society on developing their new caregiving identity. Providing intensive informal primary care to older people affects both men’s and women’s mental and physical health. Gender ideals of the feminine nurturing role further disadvantage women as they determine the caregiving arrangements, the strategies and resources to sustain the caring burden, and the adaptability to experience their new caregiving role positively. Men appear more flexible to debate their hegemonic masculinity and defend their existence in the caregiving role. Conclusion and implications: Transgressing gender lines and expanding gender possibilities can ease the caregiving burden and strengthen caregivers coping potentials. Health professionals can empower informal careers to challenge gender binaries and expand gender possibilities by intentionally injecting the language of diversity in caring information and caring processes. The review findings outline a path for research on gender identity development in older people’s care.

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Gendered experiences of providing informal care for older people: a systematic review and thematic synthesis

Background and purpose: The caregiving’s impact on informal carers’ quality of life and gender-based stereotypes make older individuals’ informal care a complex process for which our knowledge is still limited. The purpose of this review is to identify how gender relates to informal carers’ experiences of providing care for people aged 60 years and over with mental and physical health needs by synthesising the available empirical data published between 2000 to 2020. Design and methods: The systematic method for reviewing and synthesising qualitative data was performed using the PRISMA checklist and ENTREQ statement. The CASP tool was used to examine the quality of the included papers. Thematic synthesis was used as the methodological framework. Results: This review produced two analytical themes, the impact of gender on the caregivers’ labour and negotiating gender identity with self, society, and cultural norms. While informal caregivers share motivators, a linkage between traditional gender stereotypes impacts caregiving burden and coping strategies. Informal carers’ experiences entail a constant pursuit of self-agency after acquiring the caregiver role. Cultural values and their intersection with gender appear to influence caregivers’ healthy adjustment into their new caregiving identities. The flexibility to move beyond gender boundaries could mediate caregivers’ negotiations between self and society on developing their new caregiving identity. Providing intensive informal primary care to older people affects both men’s and women’s mental and physical health. Gender ideals of the feminine nurturing role further disadvantage women as they determine the caregiving arrangements, the strategies and resources to sustain the caring burden, and the adaptability to experience their new caregiving role positively. Men appear more flexible to debate their hegemonic masculinity and defend their existence in the caregiving role. Conclusion and implications: Transgressing gender lines and expanding gender possibilities can ease the caregiving burden and strengthen caregivers coping potentials. Health professionals can empower informal careers to challenge gender binaries and expand gender possibilities by intentionally injecting the language of diversity in caring information and caring processes. The review findings outline a path for research on gender identity development in older people’s care.

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Gaining Experience Over Time: The Family Caregivers' Perception of Patients with a Tracheostomy in Home Care

Background: The transition of tracheostomy patients to the home poses many challenges for both the patient and the family. Identifying and understanding the experiences of family caregivers pave the road for discovering and meeting care needs. This study has been aimed to explain the experiences of family caregivers of patients with a tracheostomy about patient care at home. Materials and Methods: This qualitative study was conducted using a conventional content analysis approach from September 2018 to January 2019. Participants included nine family caregivers and one professional caregiver who were selected through purposive sampling method. The in-depth interviews were conducted at home or in health centers using field notes. Data were recorded manually and analyzed using the five-step method proposed by Granehim and Lundman. Results: The data led to the emergence of 1591 initial codes, 23 subcategories, and 6 categories. Categories include the need for training, the need for receiving care support, care challenges, care burden, gaining experience, hope, and inner satisfaction. Conclusions: In this study, the family caregivers faced with lots of challenges in caring patients with tracheostomy so that they were in needs of training and support from professionals. Although they got skillful in care and endure burden, they were so hopeful and satisfied with their attempts. Hence, there is a need for official nongovernmental organizations with the aim of maintaining care and protecting their families. 

 

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From Burden to Depressive Symptoms in Informal Caregivers during the COVID-19 Pandemic: A Path Analysis

Background: The objective of this study was to assess the complex relationship between the multiple determinants of the caregiving process, the caregiver burden, and depression during the COVID-19 pandemic in Serbia. Methods: A cross-sectional study was conducted on a nationally representative sample (n = 798) during the COVID-19 pandemic in Serbia from March to September 2020. A nine-section questionnaire designed for this study included the characteristics of caregivers, characteristics of care and care recipients, COVID-19 related questions, and the following standardized instruments: 12-Item Short-Form Health Survey, Fatigue Severity Scale, Activities of Daily Living Scale and Instrumental Activities of Daily Living Scale, Zarit Caregiver Burden Scale, and Beck Depression Inventory. Path analysis was used for the simultaneous assessment of the direct and indirect relationships of all determinants. Results: More than two thirds (71.9%) of informal caregivers experienced a burden, and more than one quarter (27.1%) had depression symptomatology. Self-rated physical health, need for psychosocial support, and caregiver burden were the main direct predictors of depression. Multiple determinants of the caregiving process had indirect effects on depressive symptomatology via the caregiver burden as a mediating factor. Conclusions: The subjective burden presented a significant risk factor for depressive symptoms in caregivers during the COVID-19 pandemic. The provision of psychosocial support was identified as an important opportunity to reduce depressive risk in informal caregivers.

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The fog of support: an inquiry into the provision of respite care and carers assessments for people affected by dementia

This report reviews the support available to informal carers of people with dementia, with specific attention being given to carers’ assessments (or “check ins”) and the provision of short breaks for carers. Evidence for this research was collected from a range of sources, including via desk-based research, a survey of directors of adult social care, a request to local authorities for data, interviews with senior leaders and commissioners in adult social care, a survey of professionals, a survey of carers, and workshops held in England and Wales with people living with dementia and carers. The findings show that there is a reported lack of available services that enable carers of people living with dementia to take a break from caring. Positive support is reported by some (such as that provided by local charities, and the use of community resources); however, both professionals and carers report difficulty in finding care provision which suits the needs of people living with dementia, and this in turn prevents carers from arranging breaks for themselves. The experience of carer assessments reported by carers is mixed; however, this research confirms findings in the wider literature that only a minority of carers have received an assessment of their needs. Furthermore, these assessments were not always experienced positively. The nature of providing short breaks for carers is challenging from a legislative perspective and at a practice level, particularly where support may be delivered to a person living with dementia but is intended primarily for the benefit of the person caring for them. Some evidence highlighted situations where this was the case, as well as situations where the person with dementia may have different wishes to the person caring for them in terms of replacement care.

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FOCUS Program: Treating patients with cancer and family caregivers as a unit of care

Background: Studies indicate that patients' and caregivers' responses to illness are interdependent; each person affects the other. Existing evidence reinforces the need to recognize family caregivers as equal recipients of care and support. Objectives: This evidence-based pilot study evaluated the feasibility and preliminary efficacy of the nurse-guided, psychoeducational, familybased FOCUS program intervention at a local oncology outpatient clinic. Methods: 30 patient-caregiver dyads were recruited from a local oncology clinic. Intervention delivery occurred using home visits and telephone calls. Self-administered questionnaires were used to assess participants' self-efficacy, quality of life (QOL), and coping pre- and postintervention, and intervention satisfaction postintervention. Three tailored psychosocial education sessions were held during a 6- to 9-week period. Findings: Significant changes in outcomes were found, including increased self-efficacy in both patients and caregivers, higher QOL in caregivers, and decreased use of substances for coping in patients. There was a trend for patients' emotional well-being to improve over time; other aspects of QOL showed little change. There were no significant changes in caregivers' coping.

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Finding a balance in family caregiving for people with dementia: A correlational longitudinal study

Aims: The “Finding a Balance Point” framework was used to explore the caregiving process over time for family caregivers of people with dementia in Taiwan. This study aimed to: (a) identify Taiwanese caregivers’ different balance trajectories; (b) explore predictors of trajectory group membership; and (c) examine associations of different balance trajectories with caregiving outcomes. Design: A correlational longitudinal design was used. Methods: Data were collected from 200 family caregivers’ self‐completed questionnaires and they were followed over 2 years (June 2015–May 2017). Discrete balance trajectories were identified by group‐based trajectory modelling. Predictors of trajectory group membership were identified from potential predictors of caregiving characteristics and caregiving factors using multivariate logistic regression. Associations of trajectory groups with caregiving outcomes (depressive symptoms and health‐related quality of life) were explored using the generalized estimating equation. Results: Balance trajectories best fit a two‐group trajectory model (poor and good). Caregivers with a poor sense of balance between competing needs were more likely to have more depressive symptoms (b = 11.71, 95% CI [9.04, 14.38], p < .001), worse physical health (b = −6.22, 95% CI [−8.71, −3.74], p < .001), and worse mental health (b = −11.1, 95% CI [−13.58, −8.63], p < .001) than caregivers with a good sense of balance. Caregivers experiencing lower role strain (b = −1.45, SE = 0.48, p = .003) or higher predictability (b = 2.83, SE = 0.76, p < .001) were more likely to belong to the good‐balance group. Conclusions: Caregivers with poor balance between competing needs are more likely to have worse caregiving outcomes. Role strain and predictability significantly predicted balance trajectory groups. Family caregivers with lower caregiving task difficulty and/or better knowledge of the care receiver were more likely to be in the good balance trajectory group. Impact: Our findings support the framework, “Finding a Balance Point,” and clarify the family caregiving process for people with dementia. This framework could be used to tailor interventions for home care nurses to improve family caregivers’ caregiving outcomes.

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Feeling of grief and loss in parental caregivers of adults diagnosed with intellectual disability

Background: The diagnosis of intellectual disability in children can produce complex grief‐related feelings in their parents. Previous studies have focused on the moment of the diagnosis or the early life of the children, and little research has been conducted on their feelings of grief in adulthood. The objective was to analyse the process of grief/loss in parents of adult offspring with intellectual disability. Method: The intentional sampling included sixteen parents who responded to semi‐structured interviews. A qualitative study was conducted based on grounded theory. Results: Five categories were identified: "Reception of the diagnosis", "Emotional bonds with the child", "Experience of loss and feelings in response to intellectual disability diagnosis", "Recurrent grief" and "Coping strategies". Conclusions: Recurring feelings of loss experienced by parents in relation to their child's diagnosis persist over time. Specialized emotional interventions are needed to help parents to reduce the intensity of their feelings of grief.

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Features of primary care practice influence emergency care-seeking behaviors by caregivers of persons with dementia: A multiple-perspective qualitative study

Background: Persons with dementia use emergency department services at rates greater than other older adults. Despite risks associated with emergency department use, persons with dementia and their caregivers often seek emergency services to address needs and symptoms that could be managed within primary care settings. As emergency departments (EDs) are typically sub-optimal environments for addressing dementia-related health issues, facilitating effective primary care provision is critical to reduce the need for, or decision to seek, emergency services. The aim of this study is to explore how features of primary care practice influence care-seeking decisions by community-dwelling persons with dementia and familial caregivers. Methods: Semi-structured qualitative interviews were conducted with 27 key dementia-care stakeholders (10 primary care/geriatrics providers, 5 caregivers, 4 emergency medicine physicians, 5 aging service providers, and 3 community paramedics) from multiple health systems. Transcripts from audio recordings were analyzed using a thematic analysis framework to iteratively code and develop emergent themes. Features of primary care were also synthesized into lists of tangible factors leading to emergency care-seeking and those that help prevent (or decrease the need for) ED use. Findings: Stakeholders identified eight categories of features of primary care encompassing the clinical environment and provision of care. These collapsed into four major themes: (1) clinic and organizational features—including clinic structure and care team staffing; (2) emphasizing proactive approaches to anticipate needs and avoid acute problems—including establishing goals of care, preparing for the future, developing provider–patient/provider–caregiver relationships, and providing caregiver support, education, and resources to help prevent emergencies; (3) health care provider skills and knowledge of dementia—including training and diagnostic capabilities; and (4) engaging appropriate community services/resources to address evolving needs. Conclusions: Features of primary care practice influence decisions to seek emergency department care at the system, organizational/clinic, medical, and interpersonal levels, particularly regarding proactive and reactive approaches to addressing dementia-related needs. Interventions for improving primary care for persons with dementia and their caregivers should consider incorporating features that facilitate proactive family-centered dementia care across the four identified themes, and minimize those leading to caregiver decisions to utilize emergency services.

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Feasibility of the Hand in Hand Relationship Intervention for Stroke Survivor–Caregiver Dyads: A Randomized Trial

Purpose: A strong interpersonal relationship after stroke is important for the prevention of depression in survivors and family caregivers. This study aimed to test the feasibility of quality of relationship intervention for stroke dyads called Hand in Hand (HiH). Methods: Sixteen dyads were randomized into either the HiH group (n = 8) or information, support, and referral (ISR) control group (n = 8). HiH dyads received up to eight sessions, with topics prioritized according to a 17-item screening tool. ISR dyads received up to eight sessions that included information, active listening, and referrals. Feasibility, acceptability, and outcomes data were collected for both groups. Results: The HiH and ISR groups were feasible and acceptable. Caregivers in both groups, as well as survivors in the ISR group, experienced improvements in depressive symptoms and other select outcomes. Conclusions: Findings suggest that HiH is feasible to implement with stroke dyads and that it merits further refinement and testing.

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Feasibility of an Intervention Study to Support Families When Their Loved One Has Life-sustaining Therapy Withdrawn

Background: This investigation addressed family member perceptions of preparation for withdrawal of life-sustaining treatment in the intensive care unit. These families are at a high risk for psychosocial and physical sequelae. Methods: The quantitative results of this mixed methods study are reported. A control group received usual care and an educational booklet component of the intervention. The experimental group received the above plus exposure to comfort cart items and additional psychological support. Results: Twenty-eight family members enrolled over a 13-month period. Sixty-one percent (10 intervention, 7 control) completed the follow-up. Fourteen family members (82%) recalled the booklet. Some family members reported moderate to severe depression (12.5%), anxiety (12.5%), and stress (12.6%). Satisfaction with care (83.7%-85.2%) and family member well-being (44.1) were within the norm. Short Form-36 physical component score was higher than the norm, and the mental component score was lower than the norm. Conclusions: This study demonstrated feasibility and acceptability of the interventions and follow-up questionnaires when families make the difficult decision to withdraw treatment. Strategies are suggested to strengthen statistical power.

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The fear of falls in the caregivers of institutionalized elders

Aims: To understand how the fear of falls emerges and manifests itself in caregivers of institutionalized elders. Methods: It is a qualitative study, based on the Grounded Theory and carried out with 24 informal caregivers, 5 nurses, 2 physicians and 2 directors of two Portuguese nursing homes. Data collection took place through interviews, participant observation, and documentation analysis, between October 2016 and January 2018. Data was collected and analyzed simultaneously, following the stages of open, axial, and selective coding. Results: The comparative analysis of the findings identified the conceptual category "Fear of falls in the caregivers of institutionalized elders". The main category is associated with the categories: maintaining safety, hidden fear of falls, the perceived self-efficacy in the prevention of falls, falls and interpersonal relations, previous experiences, and team support. Conclusions: The fear has an influence on the self-efficacy perceived in the prevention of falls; the quality of the teamwork, in turn, is affected by previous negative experiences and by the support of the team.

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Family-oriented interventions in long-term care residential settings: a scoping review protocol

Objectives: The objective of this review will be to identify the characteristics (eg, type, duration, and provider) of family-oriented interventions in long-term care residential settings. The authors will also identify which outcomes are reported in the literature when implementing family-oriented interventions. Introduction: An array of family-oriented interventions in long-term care residential settings exist. Given the heterogeneity of current literature, mapping characteristics and intended outcomes of family-oriented interventions is an essential step to inform how best to support families of patients in long-term care residential settings. Inclusion criteria: This review will consider studies describing family-oriented interventions for families of elderly patients in long-term care residential settings, with no exclusion based on country, gender, or comorbidities. Interventions that address any family-related issue, such as quality of life, psychological burden, and family involvement in patient care, are eligible for inclusion. Studies will be excluded if the patients are cared for at their own homes or institutionalized care is provided on a temporary basis. Quantitative, qualitative, and mixed method study designs will be considered for inclusion. Methods: A scoping review will be conducted using the JBI methodological approach. Seven databases will be systematically searched: MEDLINE, CINAHL, Scopus, Evidence-Based Medicine Reviews including Cochrane Library, PsycINFO, OpenGrey, and the Grey Literature Report. Citations will be screened against the inclusion criteria by two reviewers independently. Relevant data will be extracted from the included studies, and will be synthesized, summarized, and reported following the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews. Findings will be published in a peer-reviewed journal.

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Family-centered care with visitor limitations

Communication and support for patients and family members can be challenging, especially when in-person visitation is limited or eliminated entirely. This article discusses how healthcare teams can promote family- centered care during periods of limited visitation.

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Family‐centered care during a pandemic: The hidden impact of restricting family visits

The author discusses the importance of family-centered approach to care in nursing care, as well as the hidden effects of restricting family visits during the COVID-19 pandemic. Topics include the implementation of infection prevention and control (IPC) measures in hospitals, as well as the importance of effective communication, shared decision-making, and expert care to dying patients and their families.

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Family rules, routines, and caregiver distress during the first year of pediatric cancer treatment

Objective: A new diagnosis of pediatric cancer may disrupt family functioning. The current study aimed to describe changes in family rules and routines during the first year of pediatric cancer treatment, and to explore associations with demographics, illness factors, and caregiver distress. Methods: This exploratory mixed‐methods, cross‐sectional study examined 44 primary caregivers of youth in treatment for a new cancer diagnosis in 2019 and 2020, before the onset of the COVID‐19 pandemic. Caregivers completed validated questionnaires assessing demographic and child illness characteristics, psychosocial distress, and cancer‐related stressors, and participated in a semi‐structured interview about family rules and routines. Results: Caregivers reported changes in bedtime, mealtime, and school routines, relaxed behavioral expectations and rules around screen time, and new rules and routines around treatment, medications, and infection control. Caregivers with elevated levels of psychosocial distress reported more changed routines than caregivers with low levels of psychosocial distress. Caregivers who endorsed more cancer‐related stressors reported more new rules and routines than those who reported fewer cancer‐related stressors. Demographic and illness factors were not significantly associated with the number of changed, new, or stable family rules and routines. Conclusions: Families may relax rules and routines during the first several months of diagnosis, and this may be related to side effects of treatment and limited caregiver capacity. The long‐term impact of changes in family rules and routines during cancer treatment warrants further study given that accommodating parenting strategies have been associated with adverse short‐ and long‐term child health and behavior outcomes.

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Family Psychoeducation as an Intervention Tool in the Management of Schizophrenia and the Psychological Wellbeing of Caregivers

Background: Caregivers need to be imparted with specialized skills to retain their psychological well-being and to manage the patient with schizophrenia effectively. Aim: This study aims to understand the role of family psychoeducation (FPE) in the management of schizophrenia and the well-being of caregiver. Materials and Methods: The sample included 40 caregivers and patients, 20 each assigned randomly in treatment group (psychoeducation given) and the control group. Pre and post assessment of psychological wellbeing (PWB), symptoms of the patient, and emotional regulation was done through the scales mentioned in the study and analyzed through analysis of variance. Results: Statistically significant improvement in emotional regulation of caregivers and patient (P = 0.05) and improvement of PWB in caregivers (P = 0.01) as well as significant reduction in symptoms of patients (P = 0.01) found in the treatment group. Conclusion: FPE was found to be effective in improving PWB of caregivers and effective management of a patient with schizophrenia.

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Family physician’s and primary care team’s perspectives on supporting family caregivers in primary care networks

Background: Research, practice, and policy have focused on educating family caregivers to sustain care but failed to equip healthcare providers to effectively support family caregivers. Family physicians are well-positioned to care for family caregivers. Methods: We adopted an interpretive description design to explore family physicians and primary care team members’ perceptions of their current and recommended practices for supporting family caregivers. We conducted focus groups with family physicians and their primary care team members. Results: Ten physicians and 42 team members participated. We identified three major themes. “Family physicians and primary care teams can be a valuable source of support for family caregivers” highlighted these primary care team members’ broad recognition of the need to support family caregiver’s health. “What stands in the way” spoke to the barriers in current practices that precluded supporting family caregivers. Primary care teams recommended, “A structured approach may be a way forward.” Conclusion: A plethora of research and policy documents recommend proactive, consistent support for family caregivers, yet comprehensive caregiver support policy remains elusive. The continuity of care makes primary care an ideal setting to support family caregivers. Now policy-makers must develop consistent protocols to assess, and care for family caregivers in primary care. 

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Family perspectives on the acceptability and usefulness of the FAB Positive Behaviour Support program: A pilot study

Purpose: This pilot feasibility study aimed to gain preliminary insight into the acceptability and usefulness of the FAB-PBS program for providing behavior support to families following acquired brain injury (ABI) in community settings. Background: The FAB-PBS program is based on a Positive Behavior Support (PBS) framework and principles of Family-Centered Care and Family-Directed Intervention. It consists of an education phase followed by individualized sessions during which the family is supported to develop and implement a PBS plan. Methods: A mixed-methods design was utilized, with feedback obtained from family members via short questionnaires and semi-structured interviews post education phase and individualized sessions, and at three-month follow up. Results: Two family members completed the full FAB-PBS program and reported high satisfaction with the program and increased confidence in providing behavior support. Findings also suggested an increase in desired behaviors and a decrease in challenging behaviors presented by family members with ABI. Conclusions: The FAB-PBS program may be an acceptable and feasible approach to increasing the capability of family caregivers in providing behavior support following ABI. Further pilot testing is required to inform the development of a larger feasibility study. 

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Family members of Veterans with mental health problems: Seeking, finding, and accessing informal and formal supports during the military-to-civilian transition

Introduction: For some Canadian Armed Forces Veterans who are released, the military-to-civilian transition (MCT) process may be complicated by significant mental health problems (e.g., posttraumatic stress disorder, depression, anxiety). Family members (i.e., spouses, adult children, parents) who serve as the primary caregivers for Veterans with mental health problems devote significant energy to seeking and finding social support as they navigate the MCT. Objectives: The primary purposes of this qualitative study were to 1) hear from these family members and learn about the obstacles to and successes in accessing formal and informal social supports during the MCT and 2) understand how accessing such supports was affected by the Veteran's mental health problems. Methods: A sequential, multiple qualitative design was used, involving both in-depth individual interviews and focus groups with English- and French-speaking family members (N =36) living in Eastern, Central, and Western Canada (i.e., individual, n = 27; focus groups, n = 9). Data coding was facilitated through the qualitative data analysis sot ware MAXQDA, and data analysis was conducted using grounded theory strategies. Results: Amid numerous indicators of significant resolve and commitment to health, family members revealed significant issues (e.g., mental health stigma of the Veteran, caregiver burden and burnout) that contributed to notable barriers in accessing both informal (i.e., extended family, friends, online support groups) and formal (i.e., Operational Stress Injury Social Support, Military Family Resource Centres) support systems helpful in navigating the MCT. Discussion: Results are discussed in the context of how the Veteran's mental health compounded barriers for family members who sought to access informal and formal support services that would provide comfort, financial aid, respite, and counsel to the Veteran family in the MCT. Conclusions: Building on the resilience of military-connected families, gaps in the systems of formal and informal care are discussed in the context of how bold and creative changes (e.g., proactive signposting) might facilitate the MCT for Veterans with mental health problems.

 

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Family involvement in the Namaste care family program for dementia: A qualitative study on experiences of family, nursing home staff, and volunteers

Background: Family caregivers may experience difficulty maintaining meaningful contact with a relative with advanced dementia. Nevertheless, some family caregivers prefer to remain involved in the care of their relative after admission to a nursing home. Family involvement in the care is important but little is known about how this works in practice and what exactly is needed to improve it. Objective: To examine experiences of family caregivers, staff and volunteers with family caregiver participation in the Namaste Care Family program, a psychosocial intervention to increase quality of life for people with advanced dementia that may help family caregivers to connect with their relative. Further, we aimed to examine facilitators of and barriers to family participation. Methods: exploratory qualitative design using semi-structured interviews. Ten nursing homes in the Netherlands. Ten family caregivers, 31 staff members and 2 volunteers who participated in the Namaste Care Family Program. Qualitative interview study using thematic analysis. Interviews were held with family caregivers, staff members, and volunteers about their experiences with the Namaste Care Family program. Results: In general, family caregivers experienced their involvement in the Namaste Care Family program as positive, particularly the meaningful connections with their relative. However, putting family involvement into practice was challenging. We identified three themes covering facilitators for and barriers to participation: (1) Preferences of family caregivers for activities with their relative (Activities): practical activities matching one's own interests were seen as facilitating, while perceived lack of knowledge and reluctance to engage with other residents were barriers. (2) Communication between family caregivers, staff and volunteers (Communication): providing clear information about the program to family caregivers facilitated their involvement. Feeling insecure inhibited family involvement. (3) Personal context of family caregivers (Personal circumstances): feeling fulfillment and being appreciated facilitated involvement. Older age, having a family of their own, a job and complex family relations were barriers to family caregiver involvement. Conclusions: To optimize family involvement, it is important to adopt a family-centered approach and provide training and guidance. Making a personal, comprehensive plan with family caregivers and offering them guidance can help them overcome their uncertainty and remove barriers to being more involved with a care program aiming to improve the quality of life of their relative. Also recommended is training for staff to improve communication with family caregivers. The Namaste study is registered with the Netherlands Trial Register (NTR5692).

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Family Focused Therapy for Family Members of Patients with Bipolar Disorder: Case Reports of Its Impact on Expressed Emotions

Background: Caregivers of patients with bipolar disorder (BD) undergo a considerable amount of burden. In India, family caregivers are the primary source of support and care for their ill relatives. The burden faced by family members of patients with BD often results in physical and mental health consequences. This may lead to negative interaction patterns such as hostility, criticality, and overinvolvement, termed as expressed emotions (EE). Methods: Here, we report how we addressed the EE in family members, using a single-subject design that involved the family caregivers (n = 2) of two adults who presented with a diagnosis of BD with a current episode of mania. Results: An assessment of family caregivers, using the family questionnaire, revealed high EE. Family focused therapy (FFT) of 12 sessions was delivered over 3–4 weeks on an inpatient basis, with positive outcomes of reductions in EE and family stress and improved psychosocial functioning in patient that were sustained over 9–10 months. Conclusions: FFT can be an important add on psychosocial therapy to reduce EE and stress and to facilitate functioning and communication. 

 

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Family factors and health‐related quality of life within 6 months of completion of childhood cancer treatment

Objective: The transition from active cancer treatment to survivorship represents a period of uncertainty for youth and their families, but factors associated with adaptation during this period are understudied. We evaluated associations among cancer and treatment‐related variables, family factors (family functioning, caregiver health‐related quality of life [HRQL], and caregiver distress), and patient HRQL after treatment completion. We assessed the indirect effects of neurocognitive difficulties on youth HRQL through family factors. Methods: One hundred fifty‐four caregivers (of patients’ ages 0–18 years) and 52 youth (ages 7–18 years) completed questionnaires assessing family factors, neurocognitive difficulties, and HRQL for patients within 6 months following treatment completion. Electronic health records were reviewed for cancer and treatment‐related information. Bootstrapping analyses assessed whether neurocognitive function had indirect effects on HRQL through family factors. Results: Family factors were associated with self‐ and caregiver reports of children's HRQL. Controlling for demographic, cancer, and treatment covariates, caregiver reports of their child's neurocognitive difficulties had an indirect effect on their reports of child physical HRQL through family functioning. Caregiver reports of their child's neurocognitive difficulties indirectly related to caregiver reports of child psychosocial HRQL through family functioning and caregiver HRQL. Indirect effects for self‐reported neurocognitive difficulties and HRQL were not supported. Conclusions: Findings highlight the need for routine psychosocial screening for youth and caregiver reports of family adjustment and HRQL during the transition off treatment. Providers are encouraged to offer interventions matched to specific needs for families at risk for poor family functioning to improve patient outcomes as they transition off treatment.

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Family experiences of caregiving to patients with Alzheimer

Purpose: This paper aims to describe and understand the family experience of caregiving to their Alzheimer patients and to explore the impact of caregiving on the family's caregiver well-being. Design/methodology/approach: The study involved eight family caregivers from the outpatient department, specifically from the neurology-medical clinic. A descriptive phenomenological approach was used for data collection through in-depth semi-structured interviews. Findings: Four themes emerged: caregiver perception, tension, the sense of duty and commitment and altruism and sacrifice. The experience of family caregivers was different from their experiences with other chronic illnesses. Originality/value: The family caregivers experience new life when providing care to their patients with Alzheimer's. The impact of the process of caregiving on whole life appeared in both positive and negative aspects. The perception and awareness of family caregivers toward Alzheimer's disease were poor.

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Family Dynamics and the Alzheimer’s Disease Experience

Objectives: Using constructivist grounded theory, this study explored how family groups respond to Alzheimer’s disease in its early stages. Methods: Seven family units (N = 22) participated in a series of 26 longitudinal interviews and 14 other family caregivers took part in three focus groups at a later stage for refinement and verification of the findings. Results: Data analysis revealed four types of family dynamics: close dynamics at the start that were maintained throughout the experience, close dynamics at the start which became conflicting, conflicting dynamics at the start which remained problematic, and conflicting dynamic at the start which became closer over time. Factors such as prior relationships and family history, motivation to care, family organization, communication, and the family vision for future shaped the development of these dynamics. Conclusions: This theory of family dynamics in Alzheimer’s disease has the potential to inform the development of more adequate early interventions for families living with the illness.

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Family Caregiving Burden in Romantic Relationships: A Relational Turbulence Theory Analysis

Background: In addition to health and financial burdens, family caregivers can experience stress in their romantic relationships. Relational turbulence theory (RTT) is used to understand how family caregivers and caregivers' romantic partners navigate relational transitions and caregiver burden when one partner is providing informal care to another aging family member. Methods: Three hundred and nineteen participants, who were either the romantic partner providing care or the romantic partner of a family caregiver, completed an online survey. Results: Tests of RTT and caregiver burden revealed that relational uncertainty, partner facilitation, and relational turbulence were related to caregiver burden as predicted for family caregivers; relational uncertainty was unrelated to caregiver burden for romantic partners. Partner interference was unrelated to caregiver burden. Conclusions: Theoretical and practical implications are discussed. 

 

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Family caregivers' perceived level of collaboration with hospital nurses: A cross‐sectional study

Aim: To describe the extent of perceived collaboration between family caregivers of older persons and hospital nurses. Background: Collaboration between hospital nurses and family caregivers is of increasing importance in older patient's care. Research lacks a specific focus on family caregiver's collaboration with nurses. Method: Using a cross‐sectional design, 302 caregivers of older patients (≥70 years) completed the 20‐item Family Collaboration Scale with the subscales: trust in nursing care, accessible nurse and influence on decisions. Data were analysed with descriptive statistics and bivariate correlations. Results: Family caregivers rated their level of trust in nurses and nurses' accessibility higher than the level of their influence on decisions. Family caregivers who had more contact with nurses perceived higher levels of influence on decisions (p ≤ .001) and overall collaboration (p ≤ .001). Conclusion: Family caregivers' collaboration with nurses can be improved, especially in recognizing and exploiting family caregivers as partner in the care for older hospitalized persons and regarding their level of influence on decisions. Implications for Nursing Management: Insight into family caregivers' collaboration with nurses will help nurse managers to jointly develop policy with nurses on how to organise more family caregivers' involvement in the standard care for older persons.

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Family Caregivers' Emotional Preparedness for Death is Distinct from Their Cognitive Prognostic Awareness for Cancer Patients

Background: Cognitive prognostic awareness (PA) and emotional preparedness for a loved one's death are distinct but related phenomena. However, the distinction between these two concepts has not been studied in family caregivers. Objective: To examine whether these two concepts are distinct by comparing their evolution and predictors over cancer patients' last year. Methods: Agreement between emotional preparedness for death and cognitive PA was longitudinally evaluated for 309 family caregivers by percentages and kappa coefficients. Predictors of the two outcomes were evaluated by multivariate logistic regression models with the generalized estimating equation. Results: Agreement between family caregivers' emotional preparedness for death and cognitive PA decreased slightly (54.73%–43.64%) from 181–365 to 1–30 days before the patient's death, with kappa values (95% confidence interval) from −0.060 (−0.123 to 0.003) to 0.050 (−0.074 to 0.174), indicating poor agreement. Participants were more likely to report adequate emotional preparedness for death if they had financial sufficiency, more contact/communication with the patient, lower caregiving burden, and stronger perceived social support. Family caregivers were more likely to have accurate PA if they were 56–65 years old, the patient's adult child, and had more contact/communication with the patient and greater subjective caregiving burden. Conclusions/Implications: Family caregivers' emotional preparedness for death and cognitive PA were distinct, as supported by their poor agreement, lack of reciprocal associations, and two different sets of predictors. Health care professionals should facilitate family caregivers' accurate PA and cultivate their emotional preparedness for death by enhancing patient-family contact/communication and easing their caregiving burden to improve quality of end-of-life care.

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Family caregiver support—a facilitator to empower family caregivers

Background: Mental disorders are highly prevalent, placing an enormous burden on individuals, society and economy. Research shows that family members who provide care to individuals with chronic or disabling mental conditions are themselves at risk. As a response to this problem, the project 'Family Caregiver Support - Strategies and tools to promote the mental and emotional health of caregivers' emerged, funded by Erasmus + Program and carried out by 8 European partners including ESS|P.PORTO. Objectives: To empower family members as caregivers and to give them access to relevant medical information and to psychological support for their own needs. Methods: A Guide and a Resource Pack concerning 9 important mental health disorders were developed. An interactive e-platform and a mobile App were developed to make available these materials. Validation of the products was carried out, in each country, by caregivers and health/social care professionals through online questionnaires. Data were collected and processed in an anonymous manner, and the confidentiality was ensured. Results: In Portugal, 98% of respondents (25 caregivers/citizens interested on subject, and 25 health/social care professionals), consider the accessibility and attractivity of the platform very good or excellent; and more than 90% consider materials very effective for the caregiver's empowerment. Some issues were identified to add to Resource Pack. Conclusions: Data from partners is being processed but there is already strong evidence of the usability and efficacy of the project's outcome, and a strong contribution was done for adult education concerning physical, mental and emotional health promotion of family caregivers. 

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Family Caregiver Support of Patient Self-Management During Chronic, Life-Limiting Illness: A Qualitative Metasynthesis

Background: Family caregivers play an integral role in supporting patient self-management, yet how they perform this role is unclear. We conducted a qualitative metasynthesis of family caregivers' processes to support patient self-management of chronic, life-limiting illness and factors affecting their support. Methods: Methods included a systematic literature search, quality appraisal of articles, data abstraction, and data synthesis to produce novel themes. Results: Thirty articles met inclusion criteria, representing 935 international family caregivers aged 18 to 89 years caring for patients with various health conditions. Three themes characterized family caregivers' processes to support patient self-management: "Focusing on the Patient's Illness Needs," "Activating Resources to Support Oneself as the Family Caregiver," and "Supporting a Patient Living with a Chronic, Life-Limiting Illness." Factors affecting family caregivers' support included Personal Characteristics, Health Status, Resources, Environmental Characteristics, and the Health Care System. Conclusions: The family caregiver role in supporting patient self-management is multidimensional, encompassing three processes of care and influenced by multiple factors.

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Family Caregiver Suffering in Caring for Patients with Amyotrophic Lateral Sclerosis in Korea

Objectives: The purpose of this study was to describe the meaning of the suffering experience of Korean ALS family caregivers. Methods: This is a descriptive phenomenological study that included ten participants using convenience sampling with maximum variation in a tertiary hospital in Seoul, South Korea. Colaizzi’s data analysis method was used to inductively determine themes and formulate meanings. Results: The three main themes derived from analysis were: “frustration with seeing a patient suffering”, “burnout at the cost of a life of dedication”, and “desperate need for help”. Conclusions: Caregivers experience high levels of suffering, which can come in various forms depending on the circumstances of the particular patient and family. Especially, distress from seeing a loved one suffering was another aspect of suffering in Korean ALS caregivers, reflecting strong family ties. At the same time, patients are in desperate need of help and support from their families. Thus, it is essential to provide care to lessen the causes of distress and meet the needs of not only patients, but also caregivers through family-centered care to improve overall quality of life for all involved.

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Family achievements in struggling with schizophrenia: life experiences in a qualitative content analysis study in Iran

Background: The challenges of living with and taking care of a patient with schizophrenia can lead to positive changes depending on the experiences and reactions of family caregivers. Such changes may directly affect the family performance and the patient’s recovery stage. Aims: Present study aimed to explain the positive experiences reported by family caregivers of patients with schizophrenia. Methods: The present study is a qualitative study of content analysis. Data were collected using semi-structured and in-depth interviews with 15 family caregivers of patients with schizophrenia referring to one of the psychiatric hospitals in Zahedan, Southeast part of Iran. Purposive sampling method was applied and data analysis was conducted using conventional content analysis proposed by Graneheim and Lundman. Results: Data analysis created a theme entitled “family achievements in struggling with schizophrenia”. This theme included four categories including Developing positive personality traits in family members, Strengthening family ties, developing insight into the life, and social mobility. Conclusions: The results provided insights that the experience of taking care of patients with schizophrenia led to positive consequences for family caregivers. Thus, it is recommended that psychiatrists or consultants help families rely on positive experiences and share these experiences with families with a newly-suffered patient.

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Family accommodation in eating disorders: a preliminary examination of correlates with familial burden and cognitive-behavioral treatment outcome

Background: Previous research suggests caregivers of individuals with eating disorders (EDs) may attempt to reduce family strain by engaging in accommodation and enabling behaviors to avoid conflict or alleviate stress of the affected individual. Moreover, families often reorganize life around the ED, reinforcing ED behaviors and exacerbating family dysfunction and caregiver distress. However, limited research has examined how accommodation relates to caregivers' distress, family functioning, and treatment outcomes. The current study provides an initial evaluation of these associations among treatment-seeking individuals with EDs and their family members. Method: Forty family members of individuals receiving cognitive behavioral therapy for EDs in a residential treatment soetting completed the Accommodation and Enabling Scale for Eating Disorders (AESED) and measures of anxiety (Patient-Reported Outcomes Measurement Information System anxiety scale) and family functioning (Family Assessment Device; FAD) at the time of their family member's treatment admission. Results: Eighteen patients completed the Eating Disorder Examination-Questionnaire (EDE-Q) at admission and discharge. AESED scores were positively associated with family member anxiety, FAD roles, FAD behavioral control, and higher patient EDE-Q global scores at discharge. Conclusions: Findings provide preliminary evidence that greater family accommodation not only relates to poorer family functioning, but uniquely relates to worse ED treatment outcome.

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Factors related to the use of religious coping by informal caregivers: an integrative review

Objectives: to identify the factors related to the use of religious coping in informal caregivers. Methods: integrative literature review carried out through a search in the databases LILACS, PubMed, Scopus, Web of Science, and CINAHL, in addition to the Virtual Health Library and SciELO. The study selected primary articles in English, Portuguese, and Spanish, using the descriptors Coping Behavior, Caregivers, Spirituality, and Religion, which were combined with each other and with synonyms. There was no time limit for the publications. Results: nine articles were selected. Factors related to the use of religious coping in informal caregivers included: having an advanced age, experiencing traumatic situations, being under overload, being a spouse or mother, caring for hospitalized individuals, or for those with chronic diseases and high degrees of dependence. Conclusions: the factors related to the use of religious coping are multifaceted and involve physical, psychological, psychosocial, and situational aspects.

 

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Factors associated with informal caregiving and its effects on health, work, and social activities of adult informal caregivers in Malaysia: findings from the National Health and Morbidity Survey 2019

Background: The increase in the elderly population, chronic and degenerative diseases, as well as accidents at work and on the road in Malaysia would result in an increased demand for informal care. This paper aimed to determine the associated factors of informal caregiving and its effects on health, work and social activities of adult informal caregivers in Malaysia. Methods: The data from the 2019 National Health and Morbidity Survey (NHMS), a nationwide cross-sectional survey with a two-stage stratified random sampling design, was used in this research. The study included respondents who were 18 years and older (n = 11,674). Data were obtained via face-to-face interviews using validated questionnaires. Descriptive and complex sample logistic regression analyses were employed as appropriate. Results: 5.7% of the adult population were informal caregivers. Provision of informal care were significantly associated with the female sex (OR = 1.52, 95% CI [1.21, 1.92]), those aged 36–59 years (OR = 1.61, 95% CI [1.15, 2.25]), and those who reported illness in the past 2 weeks (OR = 1.79, 95% CI [1.38, 2.33]). The risk of having their health affected were associated with female caregivers (OR = 3.63, 95% CI [1.73, 7.61]), those who received training (OR = 2.10, 95% CI [1.10, 4.00]) and those who provided care for 2 years or more (OR = 1.91, 95% CI [1.08, 3.37]). The factors associated with the effects on work were ethnicity, received training and had no assistance to provide the care. In terms of effect on social activities, female caregivers (OR = 1.96, 95% CI [1.04, 3.69]) and caregivers who received training were more likely (OR = 2.19, 95% CI [1.22, 3.93]) to have their social activities affected. Conclusion: Our study revealed that sex, age, and self-reported illness were factors associated with being an informal caregiver in Malaysia. Informal caregivers faced effects on their health, work, and social activities which may be detrimental to their well-being. This understanding is crucial for planning support for caregivers.

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Factors Associated with Health Check-up and Cancer Screening Participation among Family Caregivers of Patients with Dementia: A Cross-Sectional Study

Background: Providing care for patients with dementia can negatively influence the physical health and health behaviours of family caregivers. A better understanding of the factors associated with health check-up and cancer screening participation is vital for developing effective interventions. Thus, this study aimed to identify factors associated with health check-up and cancer screening participation among family caregivers of patients with dementia. Methods: This was a cross-sectional study that analysed the data of 2,414 family caregivers of patients with dementia collected by the Korea Community Health Survey in 2017. A binomial logistic regression analysis was performed to identify demographic, socioeconomic, and health status factors associated with health check-up and cancer screening participation among family caregivers of patients with dementia. Results: Health check-up and cancer screening rates among family caregivers of patients with dementia were 68.7% and 61.4%, respectively, which were significantly lower than the rates for individuals who were not caregivers of patients with dementia. Those with lower education levels had lower odds ratios (OR) for both health check-up (OR: 0.60) and cancer screening (OR: 0.59) participation. In addition, symptoms of depression were associated with lower participation (health check-up OR: 0.67; cancer screening OR: 0.65). Conclusions: More targeted disease prevention and management strategies must be developed for family caregivers of patients with dementia, particularly those with depressive symptoms and lower education levels. 

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Factor analysis of the relationship between PANSS score and family burden of patients with schizophrenia

Objective: This study aims to investigate the burden of family caregivers of patients with schizophrenia, and its influencing factors. Methods: A total of 105 patients with schizophrenia and their caregivers were investigated using the positive and negative symptom scale (PANSS) and family burden scale of disease (FBS). Results: There was a strong correlation between the patient's recovery and family burden, especially between positive and negative symptoms and family financial burden, family daily activities, family recreational activities, and family relationship. Conclusion: There is a strong correlation between the patient's recovery and family burden, and this is especially correlated to family economic burden, family daily activities, family recreational activities, and family relationship. Medical staff should pay attention to the psychological characteristics of patients and fully understand and avoid the adverse effects of family burden on the rehabilitation of patients. There is a strong correlation between the patient's recovery and family burden, and this is especially correlated to family economic burden, family daily activities, family recreational activities and family relationship. Medical staff should pay attention to the psychological characteristics of patients, and fully understand and avoid the adverse effects of family burden on the rehabilitation of patients. 

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Exposure to violence and risk of post-traumatic stress disorder in family caregivers of psychotic patients

Introduction: Family caregivers of psychotic patients are exposed to violence and stress. However, associated psychological outcomes are poorly characterized in this population. Objectives: The aim of this study was to clarify the relationship between violence directed towards caregivers of patients with psychosis and developing post-traumatic stress disorder (PTSD). Methods: Participants were family caregivers of psychotic patients (n=95). They completed a questionnaire assessing sociodemographic characteristics. Sociodemographic and clinical data of patients were collected from medical records. We used the perceptions of prevalence of aggression scale (POPAS) to measure the frequency and severity of aggression directed at the respondent in the past and the Impact of Event Scale-Revised (IES-R) to evaluate PTSD. Results: A rate of 75.8% of caregivers reported experiencing moderate to severe levels of aggression. Decreased contact with patient (p=0.00), male gender (p=0.00), older age (p=0.00) and parent relationship (p=0.01) of caregivers, diagnosis of schizophrenia or schizoaffective disorder (p=0,00) and poor adherence to treatment (p=0,00) in affected relatives were associated with experiences of moderate–severe aggression. More than a half of caregivers (54.7%) reported potentially significant levels of PTSD which correlated with the level of aggression (p=0.00). Conclusions: Our findings suggest that a large proportion of family caregivers of patient-initiated violence in psychosis reported experiencing a great distress and a high level of PTSD symptomatology. So, more attention should be paid to the support needs of caregivers who are faced with potentially life threatening aggressive behaviour by psychotic family members.

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Exploring the meaning of dignity at end of life for Chinese Canadians caregivers: A qualitative cross-cultural study

Background: Preserving patient dignity is a fundamental value in palliative care and is associated with an increased sense of meaning at end of life. The empiric Dignity Model, developed by Chochinov et al. (2002), identifies physical and psychosocial issues impacting dignity and provides guidance for dignity conserving care. Aim: This study's objectives are to explore the generalizability of the empiric Dignity Model to Chinese Canadians an immigrant population influenced by both Western and Asian values. The study will explore how dignity is culturally mediated. Design: Template analysis using NVivo was used to assess for themes and to explore new themes in focus group interviews. Participants: Three focus groups of thirty-one first generation Chinese Canadians were conducted in the community setting, in the metropolitan area of Greater Vancouver. Results: The three thematic categories of the Dignity Model were broadly supported. Themes of Family connectedness and the Confucian virtue of filial piety (duty that children have towards their parents), were found to be strongly relevant for Chinese Canadians. Subjects' acculturation within Canada led to an evolution of perception of dignity as new ideas are accepted or rejected and blended with pre-existing values. Conclusion: To the author's knowledge this is the first study on the Dignity Model done in a Chinese Canadian population. The conceptualization of dignity for first generation Chinese Canadians is influenced by both Western and Asian culture. This study highlights the unique constructs of dignity for Chinese Canadians and areas to enhance dignity preserving care in a cross-cultural context.

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Exploring opportunities for holistic family care of parental caregivers of children with life-threatening or life-limiting illnesses

Background: Life-threatening and life-limiting illnesses in children have profound implications for all family members, many of whom experience unmet health and support needs. Methods: Guided by literature on family-centered care and an Interpretive Description methodology, qualitative focus group interviews were conducted with 18 parental caregivers and health care and support providers to explore family experiences and identify care and support needs across the illness trajectory. Findings: Data analysis resulted in three themes related to parental participation in children's medical care, parental and familial psychological well-being, and social support needs. These inter-related themes reflect the complex nature of family life with childhood illness, highlighting families' holistic needs and how children's physical and psychological care is intertwined with the psychological and social well-being of the family system. Additionally, the findings revealed the significance of communication to parental caregivers' hope, coping, and well-being. Conclusions: The findings add depth to existing literature, and identify opportunities for addressing families' unmet needs, with specific attention to the role that social workers can play in facilitating family-centred care to promote effective support of parental caregivers. As such, the findings emphasize the important contributions that social workers can make within health care teams and in educational settings to optimize parents' ability to care for ill children while maintaining family functioning and well-being, and as advocates for social and policy change. 

 

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Exploring Family Caregiver Communication Difficulties and Caregiver Quality of Life and Anxiety

Background: When family caregivers are involved in patient care, both patients and caregivers experience better clinical outcomes. However, caregivers experience communication difficulties as they navigate a complex health care system and interact with health care providers. Research indicates that caregivers experience a communication burden that can result in topic avoidance and distress; however, little is known about how burden stemming from communication difficulties with health care providers relates to caregiving outcomes. Objectives: To investigate how family caregiver communication difficulties with health care providers influence caregiver quality of life and anxiety. Methods: Data were collected in a cross-sectional online survey of 220 caregivers with communication difficulties resulting from caregiver avoidance of caregiving-related topics, inadequate reading and question-asking health literacy, and low communication self-efficacy. Results: Caregiver outcomes were not affected by reading health literacy level but did differ based on question-asking health literacy level. Adequate question-asking health literacy was associated with lower anxiety and a higher quality of life. Caregivers who avoided discussing caregiving topics reported higher anxiety and lower quality of life and caregivers with increased communication self-efficacy reported a higher quality of life. Conclusion: Involvement of family caregivers in care is likely to require tailored approaches that address caregiver communication and health literacy skills. Findings from this study suggest that hospice and palliative care providers should identify and provide support for caregiver communication difficulties in order to positively influence caregiver quality of life and anxiety.

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The experiences of well-being of family caregivers in palliative care: A qualitative study using thematic analysis

Background: Family caregivers play an important role in supporting patients at the end of life. Although providing care for palliative care patients can be inherently stressful, it is possible for family caregivers to experience both positive experiences and stress simultaneously. Understanding these positive experiences can be helpful to aid counterbalancing the negative aspect of caregiving. Methods: Therefore, we conducted a qualitative study using face-to-face interviews with semi-structured questions to explore the experiences of well-being of palliative care family caregivers from a positive perspective. The entire sample consisted of 18 family members caring for cancer patients and 2 family members caring for patients with motor neuron disease. The interviews were transcribed verbatim and thematically analyzed with qualitative research software NVIVO. Findings: The themes generated from the analysis are: (1) Acceptance, (2) Gratitude, (3) Hope, (4) Happiness and (5) Support. The 5 themes provide 6 constructs for independent intervention. Conclusions: Understanding these themes that promote caregiver well-being can be a guide for us to take care of our family caregivers.

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The experiences of the caring dyad: (Un)articulated realities of living with cardiometabolic risk, metabolic syndrome and related diseases in severe mental illness

Background: Informal carers play an important role in the care of patients with mental illness. Little is known of the relationship experience of the patient and their informal carer (caring dyad) as the context for the intersection between physical and mental health. Aim: This study aimed to explore the impact of comorbid cardiometabolic risk (CMR), metabolic syndrome (MetS) and related diseases and severe mental illness (SMI) on the caring dyad. Design: Between October 2018 and March 2020, we conducted 11 in-depth semi-structured interviews across 6 adult caring dyads, interviewing each individual separately. Setting: Dyads were recruited within the United Kingdom; informal carers were nominated by the patient as a person who provided a significant amount of support. Variable Being Studied: Participants were asked about the impacts of illness and caring on daily life. Data Analysis: Data were analysed at the dyad level using thematic analysis, comparing and contrasting responses from each individual. Results: Themes were identified: enhanced closeness, dissonance and balance within the caring dyad. Discussion and Conclusions: This study uses a particular population of patients with comorbid CMR factors, MetS and related diseases and SMI and their informal carers to explore the relevance and utility of caring dyads as an analytical framework to inform practice and policy. Future interventions should consider factors impacting on dyadic relationships to formulate effective and sustainable dyadic care and treatment to improve health outcomes for both patients with SMI and their informal carers. Patient/Public Involvement: In this study, patients and informal carers were participants. Topic guides were piloted with a patient and informal carer. 

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Experiences of Reciprocal Caring Among Adults With an Intellectual Disability Caring for an Older Family Member

Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill‐health. This has resulted in a shift in the parameters of the relationship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as "reciprocity" or "mutual support." Limited information exists about these "hidden carers" and what services are available to support them. Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member. Method: A qualitative methodology was employed using semi‐structured interviews. Nine participants with mild‐to‐moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis. Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing family member; support; impact of caregiving and future planning. Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of "in‐house" support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.

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The Experiences of Family Members of Ventilated COVID-19 Patients in the Intensive Care Unit: A Qualitative Study

Background: Visitor restrictions caused challenges for family members when their loved ones had coronavirus disease (COVID-19) and were ventilated. Limited studies have reported on family members' experiences and support needs. Aim: To explore the experiences and support needs of family members of ventilated COVID-19 patients in the intensive care unit (ICU). Design: Exploratory, qualitative design, using in-depth individual telephone interviews, and analyzed using thematic analysis. Setting/Participants: Ten family members of adult COVID-19 patients in the ICU. Result: Seven key themes represented family members' experiences: (a) reactions to the COVID-19 diagnosis, (b) COVID-19 as a destabilizing force on the family unit, (c) COVID-19's effects on bereavement outcomes, (d) desperately seeking information, (e) family member needs, (f) conflicting feelings about video calls, and (g) appreciation of care. Family members' feelings about the patient's diagnosis and how the virus was contracted exacerbated their stress and anxiety. They struggled to feel informed about care that they could not witness and had difficulty understanding information. Family members reported that video calls were unhelpful. While these experiences made them question the quality of care, they expressed their appreciation of the frontline healthcare providers taking care of their loved ones. Conclusion: The stress and uncertainty of family members of critically ill patients with COVID-19 were influenced by their inability to feel connected to the patient and informed about care. Healthcare providers should assess each individual family's burden and preferences, and this should include establishing structured, timely, and consistent communication regarding patient care during the pandemic including early referral to palliative care.

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Experiences of family caregivers with day-care centers for elders in Southern China: a qualitative study

Background: With its massive older population, China faces challenges related to elderly support and care. One of the proposed solutions is to diversify elderly support systems. Towards this goal, the establishment of day-care centres is a new Chinese endeavour. Methods: This qualitative study was conducted among the family caregivers of elderly residents enrolled in day-care centres in Shenzhen, a Southern Chinese city, to explore and understand the experiences and factors that might affect family caregivers of frail elders enrolled in day-care centres. Twenty participants were recruited from these centres. Data were collected through in-depth interviews and were analysed via thematic analysis. Findings: The three major themes were: 'I am a traditional person': the impacts of ren and xiao, 'caring made me tired': mobility and environment barriers, and 'I am not young': relaxation feelings of family caregivers. Conclusions: The findings indicated that the day-care centres presented both challenges and opportunities to family caregivers, and the psychological and cultural services at these centres must be further enhanced.

 

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The experiences of family caregivers of people with severe mental illness in the Middle East: A systematic review and meta-synthesis of qualitative data

Background: There is a wealth of literature exploring the experiences of family caregivers of people with severe mental illness (SMI) in western countries, however, this topic has been neglected in the Middle East, despite families being the main source of caregiving in this context. The purpose of this review was to conduct a systematic review and qualitative meta-synthesis to explore the experiences of family caregivers living in countries in the Middle East caring for a relative with severe mental illness. Methods: A systematic review and meta-synthesis were conducted, to comprehensively gain a thorough and detailed overview of what is known about family caregivers’ experiences from published qualitative research in the Middle East geographical area from inception to May 2021. The review protocol was pre-registered with PROSPERO (Ref: CRD42020165519). Results: The review identified twelve qualitative studies that explored caregivers’ experiences of caring for relatives with SMI in Middle East countries. Family caregivers’ experiences were captured under seven overarching themes. The participants across all studies reported negative consequences of providing care, increased burden and emotional distress. Many experienced issues with family/marital relationships and stigmatizing attitudes and behaviours from their communities. Caregivers expressed the need for increased support which was perceived to have a critical role in improving family caregivers’ experiences. Conclusions: The meta-synthesis revealed many challenges and issues that affect caregivers of people with SMI in the Middle East. Family caregivers experienced distress and burden, and reported significant impact on their psychological well-being. Their experiences highlight the urgent need to provide more support for family caregivers in Middle East countries.

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Experiences of family caregivers of patients with COVID-19

Background: Family caregivers of patients with COVID-19 face many challenges that affect their physical and mental health. Aim: The aim of the present study was to explore experiences of family caregivers of patients with COVID-19. Methods: This phenomenological study was performed based on 13 family caregivers who had experience in home caring for patients with COVID-19. Data were collected through purposive sampling with in-depth semi-structured interviews. The Colaizzi's 7-step method was used to determine themes. The MAXQDA10 software was used to manage qualitative data analysis. Results: Thirteen family caregivers participated. Five main themes describe family caregivers' experiences of caring for patients with COVID-19: nature of the disease; unmet needs; unpleasant physical, psychological, and social experiences; care facilitators and positive experiences. Conclusion: Information and financial support for COVID-19 should be provided to family caregivers. Also, community members should embrace patients and family caregivers and reinforce the positive experiences of caregivers.

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Experiences of family caregivers of patients with borderline personality disorder of social stigma

Background: Social stigma is the most common and challenging burden of care on the family of people with Borderline Personality Disorder (BPD) In Iran, despite the cultural and social influences, this issue has been less studied. Therefore, present study was conducted to determine the lived experiences of caregivers of patients with BPD of social stigma. Materials and Methods: This qualitative study was performed at Ibn Sina hospital in Mashhad, Iran from 2017 to 2019. Participants were selected by purposive and snowball sampling method. Data were collected through semi-structured interviews. Data saturation was achieved after 16 interviews. Finally, the data were analyzed by the method proposed by Diekelmann (1989). Results: In data analysis, one main theme and two sub-themes emerged. The main themes include Black shadow. Two sub-themes consisted of society dagger and secrecy. The sub-theme of society dagger included the two common meanings (inner turmoil in response to the stigma of others and weakening of family status among relatives and acquaintances). The sub-theme of secrecy comprised of the three common meanings (concealment of disease, hide hospitalization, and seclusion). Conclusions: An understanding of the experience of family stigma can lead to the development of supportive strategies to manage this problem among caregivers of patients with BPD. Nurses can support caregivers by offering them opportunities to discuss how stigma is disrupting their caregiving roles. They can also support the caregivers in negotiating the experienced social and emotional distress and when necessary, refer them to the other members of healthcare teams. 

 

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Experiences of Daughters Caring for a Parent With Alzheimer's Disease Living at Home

Methods: The current study used purposeful and snowball sampling to interview 12 daughters who were care-givers to their parents with Alzheimer's disease. Data were collected through in-depth, semi-structured interviews and were analyzed using Colaizzi's descriptive phenomenological approach. Caregiving years ranged from 1 to 10 years, with a mean of 5 years. Findings: Six themes were uncovered: (a) Where Are You When I Need You?; (b) Safety First; (c) I Don't Know What to Say or How to Say It; (d) They Are Beautiful People, but They Aren't Trained; (e) Letting Go of Who They Were; and (f) It Affects Every Area of My Life. Conclusions: Findings suggest that caregiver daughters of parents with AD living at home are struggling and indicate a need for better support of caregivers. Implications for nursing practice, research, and education are significant and require a greater focus on the support of informal caregivers of persons with AD. 

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Experiences of Communicating with Older Adults with Alzheimer's Disease: A Phenomenological Study of Family Caregivers

Background: Communication allows people to make sense of the world, for people to connect, establish, maintain and change relationships. The declining communicative abilities of older adults with Alzheimer's disease, however, may affect the quality of life of both caregivers and older adults. This study aimed to explore and better understand the lived experiences of family caregivers in communicating with older adults with this disease. Design: An interpretative phenomenological approach was conducted in the province of Songkhla, Thailand between November 2018 to June 2019. Ten family caregivers were selected by purposeful sampling. Open-ended, semi-structured interviews were conducted. Interviews were audiotaped, transcribed verbatim and analyzed using thematic analysis. Findings: Two main themes were identified that represented areas of communication: engaging in troublesome communication; and inability to relate to each other. Effective communication strategies and techniques to improve communication problems were identified such as showing respect, compliance, distraction and therapeutic lies. After understanding the findings of this study, nurse practitioners and nurses need to understand the importance of assessing and analyzing the communication issues between caregivers and their older relatives. Conclusions: Our findings can be a basis for planning and developing appropriate supports to enhance communication skill of the family caregivers within the context of daily communication with older adults with Alzheimer's disease.

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The Experiences of Caregivers of Persons Living with Dementia in Jamaica during COVID-19

Background: This article provides descriptive insights of the experiences of family caregivers of persons living with dementia during the COVID-19 pandemic. Data were generated as part of a qualitative cross-national project to explore the costs and consequences of providing unpaid dementia care. Methods: Participants in Jamaica, who were recruited using community gatekeepers, information booths at health fairs, conferences, and other outreach events, were contacted by telephone to discuss their experiences of the pandemic. When face-to-face in-depth interview data collection was suspended due to the pandemic, ethical approval was received to contact all research participants who were informal unpaid family caregivers, both those whose care recipients had died and those who were active caregivers (N = 19). Participants in this study were the 10 active family caregivers (nF = 8; aged 45+; 60% from high socio-economic status). Their updates and reflections during these calls were documented in fieldnotes and analyzed for key themes. Findings: Data showed that the pandemic has illustrated the direct costs, both financial and otherwise, that informal dementia carers bear in Jamaica. It also intensified pre-existing challenges faced by family carers. We provide recommendations for sustainable support for family carers. 

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Experiences and needs of families with a relative admitted to an adult intensive care unit: a systematic review of qualitative studies

Objective: The objective of the review was to synthesize research studies that reported on the experiences and needs of families with a relative in an adult intensive care unit. Introduction: Having a relative in an intensive care unit has been reported to be a time of turmoil, stress, and disruption to the lives of family members. Primary research studies suggest such a crisis or even a planned intensive care unit admission can have not only emotional, physical, and psychological impact, but can also affect family member roles and function. A deeper understanding of the overall experience may assist intensive care unit staff to address specific family needs. Inclusion criteria: This review included qualitative studies of any design that described and explored the experiences and needs of family members with a relative admitted to an adult intensive care unit. Methods: The methods for the review followed the JBI meta-aggregation approach for synthesizing qualitative data. MEDLINE (EBSCO), CINAHL (EBSCO), PsycINFO (EBSCO), Embase (Embase.com) and Web of Science Core Collection (Clarivate Analytics) databases were searched for published studies. ProQuest Dissertations and Theses database (Ovid) was searched for unpublished studies. Studies published from 2010 to November 2019 in the English language were selected for possible inclusion in the review. Results: From 7208 citations, 20 studies were agreed upon for inclusion in the review. From these studies, 112 findings were extracted and synthesized into 12 categories. Four synthesized findings were compiled by aggregating the categories. Broadly, these synthesized findings related to: psychosocial health, proximity, information needs, and the intensive care unit environment. Conclusions: Being a relative of a patient in an intensive care unit is a complex, emotional, and individual experience that can have physical, psychological, and emotional impact. The synthesized findings from this review can be used to support family-centered care practices in adult intensive care units, particularly in regard to information provision, visiting practices, and supportive care. Systematic review registration number: PROSPERO CRD42016053300

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The Experience of Working With a Faith Community Nurse Liaison of Care in a Primary Care Practice Among Older Adult Clients and Their Informal Caregiver

Background: Informal caregivers of older adults aging in place are at risk for adverse health and financial consequences. This descriptive qualitative study explored the experience of working with a faith community nurse (FCN) liaison of care in a Catholic health care system affiliated primary care practice among older adult clients and their informal caregiver. Methods: Semistructured face-to-face interviews were conducted with nine older adult client–informal caregiver dyads, three clients, and one caregiver (n = 22). Interviews were audio recorded, transcribed, and analyzed using Braun and Clarke's reflexive thematic analysis method. Findings: The analysis generated one overarching theme, I'm Sorry the Study and FCN Visits Are Coming to an End, and two key themes, The FCN Was Always There to Help Us (older adult clients) and The FCN Took the Pressure Off of Caregiving for Awhile (informal caregivers). Participants viewed the FCN as an instrumental member of their health care team and considered prayer and spiritual support offered by the FCN an essential element of care.

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Experience of Caregivers Supporting a Patient through Voluntarily Stopping Eating and Drinking

Background: Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED. Objective: To explore the experiences of caregivers who supported a patient through VSED. Methods: Qualitative study with thematic analysis of transcripts of semistructured interviews with 24 U.S. caregivers for 20 individuals who had attempted VSED. Results: Analysis produced four themes: (1) Caregivers believe that VSED is the best death available to the patient. (2) Caregivers act as advocates and worry that the patient's goals will be challenged by health care professionals, the community, or legal authorities; obtaining support from a hospice is an important way to legitimize VSED. (3) Through the VSED process itself, caregivers carry the responsibility for the patient's success as the patient becomes weaker and loses focus. (4) Because there is no social script to guide the VSED process, caregivers choose what roles to play during VSED, such as focusing on physical care or being emotionally present as the patient's spouse or child. Conclusions: Caregivers face unique challenges in helping patients undertake VSED. Many are uncertain about whether they will receive support from clinicians or the community. Support from health professionals may improve caregiver confidence and reduce worry.

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Existential distress in patients with advanced cancer and their caregivers: study protocol of a longitudinal cohort study

Introduction: At the end of life, patients with advanced cancer and their informal caregivers may confront multiple existential concerns. Despite the strong potential to alleviate existential distress through psychosocial interventions, existential distress and its impact on healthcare outcomes have not yet been studied systematically. We aim to investigate the frequency, longitudinal trajectory and predictive impact of existential distress on end-of-life outcomes. We further aim to determine patients’ and caregivers’ specific need for and utilisation of psychosocial support for existential distress. Methods: This longitudinal cohort study will consecutively recruit 500 patients with advanced cancer and 500 caregivers from oncological outpatient and inpatient clinics. Participants will complete self-report questionnaires (sociodemographic and disease-related characteristics, existential distress, end-of-life outcomes, resources and support needs) at five points of assessment (at baseline and after 3, 6, 9 and 12 months). At baseline and 6-month follow-up, we will conduct structured diagnostic interviews to assess mental disorders. Statistical analyses will include descriptive statistics to determine the prevalence of existential distress, mental disorders and end-of-life outcomes; multiple linear and logistic regression analyses to calculate the predictive impact of existential distress on end-of-life outcomes; and growth mixture models to analyse longitudinal trajectories of existential distress. Discussion: This study will provide comprehensive knowledge about patients’ and caregivers’ existential concerns. The longitudinal empirical data will allow for conclusions concerning the frequency and course of existential distress throughout 1 year. This important extension of existing cross-sectional research will contribute to further develop targeted psychosocial interventions. Profiles of existential distress may be applied by clinicians from multiple professions and help to address existential concerns effectively. Ethics and dissemination: The study was approved by the institutional research ethics committee (reference number LPEK-0177). Results will be presented at scientific conferences and published in peer-reviewed journals. Other forms of dissemination will include sharing results on the psychometric properties of the structured demoralisation interview with international research groups and communication with healthcare professionals providing psychosocial treatment for patients and caregivers. Following scientific standards, our progress will be regularly updated on ClinicalTrials.gov.Trial registration numberNCT04600206.

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The everyday life situation of caregivers to family members who have had a stroke and received the rehabilitation intervention F@ce in Uganda

Background: Stroke is increasing in Africa and consequences such as limitations in the performance of activities in everyday life persist a long time. A family member might need to care for and assist the person who has had a stroke. The life situation of these caregivers thereby changes, which could lead to increased workload and new responsibilities in caring for which they lack but request knowledge. During the F@ce rehabilitation program, the caregivers received counseling, which is uncommon in the African context. The aim of the study was twofold; (1) to investigate the perceived caregiver burden and life satisfaction and, (2) to explore and describe the life situation for caregivers to persons that have had a stroke and received the mobile phone supported rehabilitation F@ce in urban areas in Uganda. Method: A mixed method design was used. Twelve caregivers took part in a semi-structured interview regarding their everyday life situation and responded to questionnaires on caregiver burden and life satisfaction. Latent qualitative content analysis was used to analyse the interviews. Results: Five categories were identified in the caregivers’ experiences of their life situation: Feels obligated but is just a natural commitment; a tightly scheduled everyday life; being the supporting relative; the caregivers´ approach as rehabilitators; and being supported by the rehabilitation intervention. The caregivers rated relatively high on the Caregiver Burden Scale and two thirds of the sample rated their satisfaction with life as a whole as dissatisfying. Further ratings on the Life Satisfaction checklist revealed that the financial, vocational, leisure and family situations were dissatisfying. Conclusions: Even if it was viewed as a natural commitment to be a caregiver when a family member had had a stroke, the life situation changed substantially for those who took on the caregiving role. Caregiving responsibilities were challenging as well as a heavy workload and a strained financial situation as many were giving up on jobs. The participants felt burdened and rated a low life satisfaction. The F@ce intervention was, however, expressed as valued and involved support and advice in their caregiving situation as well as information on stroke which relieved stress among them.

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Evaluation of depression symptoms among caregivers of children that take therapy in the national center for children rehabilitation and treatment during COVID-19 pandemic

Introduction: Raising a child with neurodevelopmental disorder is very challenging. Furthermore COVID-19 pandemic can increase stress levels especially among people that suffer from mental health disorders. On of the high risks group are children with neurodevelopmental disorders. Studies show that these difficult, challenging times have had a negative impact on most families, which have a child with neurodevelopmental disorders. Objectives: Evaluation of depression symptoms among caregivers of children that take therapy in the National Center for Children Rehabilitation and Treatment (NCCRT) during COVID-19 pandemic. Methods: The study was conducted during a two-month period March-April 2020. The sample involved 110 individuals, relatives, of children that were taking educative and rehabilitation therapy in NCCRT during last year, ambulatory or inpatients. Data were collected by clinical records and phone interviews with children’s caregiver. Instrument we used were: Demographic inventory and Hamilton Anxiety Rating Scale for anxiety symptom evaluation. All data were statistically analyzed through excel. Results: Most of individual interviewed, whom are responsible for children wellbeing were their parents, 69% of them. 56% of individuals were among 31-45 years old and 92% of them were women. Depression symptoms were slightly present. We noticed that depressive symptomatology was a bit worse in caregivers in urban areas compared with ones in rural areas. Conclusions: It is necessary supporting with special attention caregivers whom have depressive symptoms. Yet has to be evaluated the connection, if it’s present, between parents with depressive symptoms and children progress, for ones that are being supported with development therapy.

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Evaluating the provision of Further Enabling Care at Home (FECH+) for informal caregivers of older adults discharged home from hospital: protocol for a multicentre randomised controlled trial

Introduction: There are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers’ health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to informal caregivers of older adults following discharge from acute hospital care to home. The trial aims to evaluate the efficacy of the FECH+ programme on caregivers’ health-related quality of life (HRQOL) after care recipients’ hospital discharge. Methods and analysis: A multisite, parallel-group, randomised controlled trial with blinded baseline and outcome assessment and intention-to-treat analysis, adhering to Consolidated Standards of Reporting Trials guidelines will be conducted. Participants: (N=925 dyads) comprising informal home caregiver (18 years or older) and care recipient (70 years or older) will be recruited when the care recipient is discharged from hospital. Caregivers of patients discharged from wards in three hospitals in Australia (one in Western Australia and two in Queensland) are eligible for inclusion. Participants will be randomly assigned to one of the two groups. The intervention group receive the FECH+ programme, which provides structured support and problem-solving for the caregiver after the care recipient’s discharge, in addition to usual care. The control group receives usual care. The programme is delivered by a registered nurse and comprises six 30–45 min telephone support sessions over 6 months. The primary outcome is caregivers’ HRQOL measured using the Assessment of Quality of Life—eight dimensions. Secondary outcomes include caregiver preparedness, strain and distress and use of healthcare services. Changes in HRQOL between groups will be compared using a mixed regression model that accounts for the correlation between repeated measurements. Ethics and dissemination: Participants will provide written informed consent. Ethics approvals have been obtained from Sir Charles Gairdner and Osborne Park Health Care Group, Curtin University, Griffith University, Gold Coast Health Service and government health data linkage services. Findings will be disseminated through presentations, peer-reviewed journals and conferences.Trial registration number ACTRN12620000060943.

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Evaluating strategies to manage and endure challenging behaviors in mucopolysaccharidoses

The mucopolysaccharidoses (MPS) are a group of rare, genetic, lysosomal storage disorders characterized by progressive, multisystemic accumulation of glycosaminoglycans. Individuals with severe MPS often present with significant neurological involvement and may exhibit challenging behaviors, including hyperactivity, aggression, and sleep disturbance. These behaviors can cause adverse outcomes and necessitate the development of specific measures to support affected families. Through an analysis of the results reported by Hoffmann et al. in their recent study, this letter outlines important factors that must be considered when evaluating the impact of challenging behaviors associated with MPS, including treatment history, age, sibling and family relationships, the feasibility of daily caregiving, and caregiver burden. These recommendations can help guide future studies to identify the most effective coping strategies to support families of people with MPS who have challenging behaviors.

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Estimating Service Demand for Intermediary Care at a Community Integrated Intermediary Care Center among Family Caregivers of Older Adults Residing in Chiang Mai, Northern Thailand

Background: Thailand’s population is currently the third most rapidly aging in the world, with an estimated 20 million ageing population by 2050. Sustainability of the family based long-term care model is challenged by the chronic burden on family caregivers and by smaller family sizes. We aimed to introduce a new service model, Community Integrated Intermediary Care (CIIC), TCTR20190412004, including free of charge intermediary care services at CIIC centers in the local community, to help older adults whose caregivers are temporarily unable to sustain care at home. Since Thai society upholds values of gratefulness, it is better to estimate willingness to use such an intermediary care service first, before introducing the service. Methods: A total of 867 pairs of senior citizens and their family caregivers were interviewed with structured-questionnaires in 2019. Descriptive analysis and binary logistic regression were applied to determine the predictors of family caregivers’ willingness to use the CIIC service, guided by Anderson’s model of health services use. Results: About 26.8% of elderly participants and 24.0% of family caregivers were willing to use an intermediary care service. The family caregiver determinants of predisposing factors (kinship: spouse caregivers, other relatives, maid or friends; job types: own business and private company staff), enabling factors (original community residents and monthly income ≤9000 baht), and need factors (caregiver burden total scores ≥24, taking leave for caregiving, and having diabetes), were found to be significantly associated with willingness to use the CIIC service. Conclusions: The baseline survey data noted that caregivers’ sociodemographic factors and burden determined their willingness to use the intermediary care service, although the dependency of care recipients was low in this study. This, nonetheless, indicated that there is need for a backup respite care to strengthen current family based long-term aging care in Thailand.

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Establishing priorities for psychosocial supports and services among family carers of people with dementia in Ireland

Introduction: Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges. Method: Three modified nominal group technique (NGT) focus groups were conducted with family carers of people with dementia. The NGT groups were conducted with 17 participants in two stages, focusing separately on personal and social domains. Family carers identified challenges and individually ranked preferences for both existing and new services and supports. Data analysis consisted of qualitative content analysis and summative scoring of individual rankings. Findings: Family carers identified the following personal-level challenges: needing a break, social isolation and relationship changes. Family carers’ combined preferences for personal-level supports and services to overcome these challenges were day care, family care support groups, short-term respite, long-break respite and social activities. Social challenges referenced by family carers included finances, rights and entitlements and stigma and awareness. Preferences for supports and services to address these social challenges were non–means-tested carer’s allowance, legal recognition, carer’s support grant, monthly wage and community awareness programmes. Conclusion: Participants ranked day care and non–means-tested carer’s allowance as their top priorities under personal and social headings. Increased government investment in these two areas would not only help to maintain family carers’ contributions to community-based care in dementia but would also facilitate social inclusion, social connectedness and economic sustainability. 

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Engaging the Family in the Care of Young Adults With Substance Use Disorders

Efforts to engage young adults with substance use disorders in treatment often focus on the individual and do not consider the role that the family can play in the recovery process. In summarizing the proceedings of a longitudinal meeting on substance use among young adults, this special article outlines three key principles concerning the engagement of broader family units in substance use treatment: (1) care should involve family members (biological, extended, or chosen); (2) these family members should receive counseling on evidence-based approaches that can enhance their loved one's engagement in care; and (3) family members should receive counseling on evidence-based strategies that can improve their own health. For each principle, we provide an explanation of our guidance to practitioners, supportive evidence, and additional practice considerations.

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Engaging family caregivers and health system partners in exploring how multi-level contexts in primary care practices affect case management functions and outcomes of patients and family caregivers at end of life: a realist synthesis

Background: An upstream approach to palliative care in the last 12 months of life delivered by primary care practices is often referred to as Primary Palliative Care (PPC). Implementing case management functions can support delivery of PPC and help patients and their families navigate health, social and fiscal environments that become more complex at end-of-life.  A realist synthesis was conducted to understand how multi-level contexts affect case management functions related to initiating end-of-life conversations, assessing patient and caregiver needs, and patient/family centred planning in primary care practices to improve outcomes. The synthesis also explored how these functions aligned with critical community resources identified by patients/families dealing with end-of-life. Methods: A realist synthesis is theory driven and iterative, involving the investigation of proposed program theories of how particular contexts catalyze mechanisms (program resources and individual reactions to resources) to generate improved outcomes. To assess whether program theories were supported and plausible, two librarian-assisted and several researcher-initiated purposive searches of the literature were conducted, then extracted data were analyzed and synthesized. To assess relevancy, health system partners and family advisors informed the review process. Results: Twenty-eight articles were identified as being relevant and evidence was consolidated into two final program theories: 1) Making end-of-life discussions comfortable, and 2) Creating plans that reflect needs and values. Theories were explored in depth to assess the effect of multi-level contexts on primary care practices implementing tools or frameworks, strategies for improving end-of-life communications, or facilitators that could improve advance care planning by primary care practitioners. Conclusions: Primary care practitioners’ use of tools to assess patients/families’ needs facilitated discussions and planning for end-of-life issues without specifically discussing death. Also, receiving training on how to better communicate increased practitioner confidence for initiating end-of-life discussions. Practitioner attitudes toward death and prior education or training in end-of-life care affected their ability to initiate end-of-life conversations and plan with patients/families. Recognizing and seizing opportunities when patients are aware of the need to plan for their end-of-life care, such as in contexts when patients experience transitions can increase readiness for end-of-life discussions and planning. Ultimately conversations and planning can improve patients/families’ outcomes.

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Engaging carers in co-design: Development of the carer readiness tool

Introduction: The Carer Support Unit (CSU) of the Central Coast Local Health District (CCLHD), NSW, Australia, developed, trialled and implemented a Carer Readiness Tool (CRT) to help carers gauge their readiness to care at home, highlight to hospital staff areas for additional support for carers, and provide evidence of carer engagement in discharge planning. Methods: A rigorous co-design process was followed with carer consultation at key milestones in development of the CRT. The tool was piloted in two cancer/chronic renal disease inpatient units commencing November 2019. Results: The CRT was well-received by carers who appreciated the opportunity to complete the tool in their own time, not in front of the patient. Positive feedback was received from clinicians, including the breadth of the CRT’s content which contributed to better discharge planning. The need to manually incorporate a hard copy form into the electronic medical record is a limitation of the CRT. Conclusion: The CRT is context-specific and fit for purpose. During the development of the CRT, the project team focused on the face validity and usefulness of the tool. The next stage of the project will be formal evaluation of the tool to measure its impact. 

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End-of-Life Assessments and Communication for Dying Patients and Their Families

End-of-life assessments aim to help dying patients and their families plan clinical interventions in advance and prepare them for a peaceful end of life, in which the patient accepts life and death, and the family accepts the patient's departure. It is important to assess whether death is imminent within a few days, because critical hospice care is provided intensively during that period. The following five changes constitute objective evidence of the end of life: diminished daily living performance, decreased food intake, changes in consciousness and increased sleep quantity, worsening of respiratory distress, and end-stage delirium. As subjective evidence, it is suggested that sensitive perceptions of experienced nurses and the feelings of family members caring for patients should also be considered. When notifying a patient or family members that the end of life is approaching, the members of the multidisciplinary hospice team must communicate with each other, share accurate information, and provide consistent explanations. They must also listen to non-verbal communication in an empathic and supportive manner.

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Empowering Families to Take on a Primary Caregiver Role for Patients with Cancer in India: Promising Strategies, Persistent Challenges, and Tradeoffs (SCI928)

Objectives: 1. Identify the challenges and trade-offs for family members assuming a primary caregiving role to patients with cancer nearing the end of life in India. 2. Consider strategies for supporting family members assuming a primary palliative caregiving role in India. Background As the population on the Indian subcontinent is aging, so too is the incidence of cancer and the need for access to palliative care. Research Objectives Identify provider perspectives on empowering patient family members to assume a palliative caregiving role. Methods: This is a secondary analysis from the PC-PAICE (Palliative Care- Promoting Access & International Cancer Experience) study where we captured the perspectives of 44 interdisciplinary providers from 7 geographically diverse palliative care sites throughout India using a semi-structured interview guide. We identified emergent themes using qualitative content analysis methods with team consensus. Results: Theme 1: Challenge: Cultural beliefs exist that handing off or sharing any primary caregiving is a "sin" and "if they don't take care of the patient then they have done some mistake." Theme 2: Trade-off: Caregivers are overwhelmed with navigating the expectation to take on the caregiver role, when they feasibly cannot, given financial and time constraints. Theme 3: Strategies: Facilitate caregiver buy-in to the idea of palliative care includes linking caregivers to financial resources (e.g. NGO sponsored income-earning opportunities "conduct rehabilitation camps where they teach the patient or the family to make some products"), connecting caregivers to mental health support, and working with caregivers in accommodating other constraints. Conclusion: In India, family members are already primed with the expectation to assume the role of palliative caregiver; this expectation in the face of financial constraints creates a challenging situation for caregivers. Implications for Research, Policy, or Practice: Striking the right balance of what family caregivers in India take on requires acknowledging the trade-offs they might make in other parts of their lives, empowering them through training and linkage to resources, and facilitating a cultural shift to accept palliative care or help from others. Future work should explore these provider themes in interviews with caregivers and patients themselves.

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Employment and well-being among caregivers of children with autism spectrum disorder

Methods: We used the 2016–2018 National Survey of Children’s Health to assess restricted work participation among caregivers of children with autism spectrum disorder (ASD) and special health care needs (SHCN). Results: Caregivers of children with ASD (N = 2,041) were especially likely to avoid changing jobs to keep health insurance coverage (20%; 95% CI: 16%, 24%), compared to either caregivers of children with other SHCN (N = 18,189) or children without SHCN (N = 68,499). Conclusion: Identifying effective strategies to mitigate the effects of a child’s ASD diagnosis on parents’ withdrawal from the workforce would add an important piece to comprehensive, family-centered care for this at-risk population.

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Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden

Background: Despite the joy of parenting, the burden of daily caregiving for children with autism spectrum disorders (ASD) can be overwhelming and constant. Parents can expect to provide enduring care for their children with ASD. Given that the majority of individuals with autism spectrum disorders (ASD) remain in their family homes well into adulthood, often the need for assistance with activities of daily living (ADLs) is placed on parents. Providing ongoing support to adult children who have difficulty with completing ADLs can increase parental caregiving demands. Therefore, the purpose of this study was to examine the relationship between the ability of adults with ASD to perform ADLs with parental perceptions of caregiver burden. Methods: Quantitative analysis of cross-sectional multi-state data gathered electronically using Qualtrics from 320 aging parents of adults with ASD was conducted. Regression models were fit to examine the association of ADL challenges with total caregiver burden and its four domains (emotional, financial, time dependence, and developmental). Results: Parental perceptions of caregiver burden decreased, particularly time dependence and developmental burden, when adult children were less dependent in ADLs, even after adjusting for parental health and behavioral challenges. Conclusions: Findings support the need for family-centered interventions to improve the capacity of adults with ASD to perform ADLs independently.

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Embarking to Caregiving Role: A Thematic Analysis of Malay Caregivers of Older Adults with Mental Health Problems Perspectives

Background: Religion and culture affect the meaning and practicalities of caring for families with mental illness in Malaysia. Such care also differs according to social background, family values and support, commitment, availability, practicality and the needs of the care recipient. Methods: This qualitative study explores 14 Malay caregivers of the older adults with mental health problems in Kelantan, Malaysia. A semi-structured interview was translated and transcribed and subjected to thematic analysis using NVivo software. Findings: The findings show that cultural values and religion shaped the meaning of care as provided by the caregivers. The nature of the relationship is also important in determining the best person in the family to take over the caregiving role.

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Electronic Health Record Portal Use by Family Caregivers of Patients Undergoing Hematopoietic Cell Transplantation: United States National Survey Study

Background: As family caregivers of patients undergoing hematopoietic cell transplantation have multifaceted caregiving responsibilities (such as medical, household, financial) of long duration, they also have multiple physical, social, psychological, and informational needs. Objective: This study explored the prevalence of electronic health record patient portal use by family caregivers for managing both their own and their hematopoietic cell transplantation care recipient’s health, as well as potential factors associated with portal use. Methods: An electronic caregiver health survey, first developed via cognitive interviewing methods of hematopoietic cell transplantation caregivers, was distributed nationally (in the United States) by patient advocacy organizations to family caregivers of hematopoietic cell transplantation patients. It was used to assess self-reported caregiver demographics, caregiving characteristics, depression and anxiety with the Patient Health Questionnaire–4, coping with the Brief COPE, and caregiver portal use to manage care recipient’s and their own health. Results: We found that 77% of respondents (720/937) accessed electronic health record patient portals for their care recipients, themselves, or both. Multivariate models indicated use of care recipient electronic health record portals by caregivers was more likely with young, White, married, low-income caregivers caring for a parent, residing with the care recipient, and experiencing more caregiver depression. Caregiver use of their own electronic health record portal was more likely with young, White, high-income caregivers caring for a parent and experiencing chronic medical conditions of their own. Partially due to multicollinearity, anxiety and coping did not contribute independently to this model. Conclusions: Findings from the survey could open avenues for future research into caregiver use of technology for informational support or intervention, including wearables and mobile health. International Registered Report Identifier (IRRID): RR2-10.2196/4918

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Effects of Physical Activity Programs on Health Outcomes of Family Caregivers of Older Adults with Chronic Diseases: A Systematic Review

Objectives: This systematic review was conducted to analyze and capture the most recent trends in physical activity interventions for family caregivers of older adults with chronic disease as found in randomized clinical trials over the last 10 years (2010–2020). Methods: We used PubMed, CINAHL, Embase, PsycInfo, and the Cochrane Library. We synthesized participants’ demographics, physical activity interventions and family caregivers’ health outcomes. The Cochrane Collaboration Risk of Bias Tool was used to assess risk of bias of the included studies. Sixteen studies were included and most studies (n = 11) had a moderate risk of bias. Results: Physical activity programs with mixed modes (e.g., aerobic and resistance exercise), mixed delivery methods (e.g., in-person and telephone) and mixed settings (e.g., supervised gym-based sessions and unsupervised home-based sessions) were used most frequently. Physical activity interventions significantly improved psychological health but had inconsistent effects on physical health. Conclusions: This review provides current trends and research findings that suggest types of physical activity interventions and components that improve family caregivers’ health and wellness. 

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Effects of Meditation on Mental Health and Cardiovascular Balance in Caregivers

Background: Caring for a loved one can be rewarding but is also associated with substantial caregiver burden, developing mental outcomes and affecting happiness. The aim of this study was to determine the effects of a four-week, 16-h presential meditation program on physiological and psychological parameters and vagal nerve activity in high-burden caregivers, as compared to a control group. Methods: A non-randomized repeated-measures controlled clinical trial was conducted. Results: According to the ANCOVA results, the global happiness score (F = 297.42, p < 0.001) and the scores for all subscales were significantly higher in the experimental group than in the control group at 5 weeks. Anxiety levels were also significantly reduced in the experimental group (F = 24.92, p < 0.001), systolic (F = 16.23, p < 0.001) and diastolic blood (F = 34.39, p < 0.001) pressures, and the resting heart rate (F = 17.90, p < 0.05). HRV results revealed significant between-group differences in the HRV Index (F = 8.40, p < 0.05), SDNN (F = 13.59, p < 0.05), and RMSSD (F = 10.72, p < 0.05) in the time domain, and HF (F = 4.82 p < 0.05)) in the frequency domain, which were all improved in the experimental group after the meditation program. Conclusions: Meditation can be a useful therapy to enhance the mental health and autonomic nervous system balance of informal caregivers, improving symptoms of physical and mental overload.

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Effects of Interpersonal Psychotherapy (IPT) Techniques and Psychoeducation on Self-Efficacy and Care Burden in Families of Patients with Schizophrenia

Objectives: This study aims to investigate the effects of two different interventions on the self-efficacy and care burden in caregiver family members of patients with schizophrenia. Method: This semi-experimental study involved those caring for family members with schizophrenia. The family members were divided into two experimental groups and one control group. Interpersonal psychotherapy techniques and psychoeducation interventions were together applied to the first group, the second group received only the psychoeducation. Results: Interpersonal psychotherapy techniques applied together with psychoeducation were found to be more effective in reducing the burden of care and increasing the self-efficacy.

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The Effects of Group Art Therapy on the Primary Family Caregivers of Hospitalized Patients with Brain Injuries in South Korea

Introduction: This study examined the effects of group art therapy on depression, burden, and self-efficacy in primary family caregivers of patients with brain injuries. Method: This was a quasi-experimental, nonequivalent control group and a pre- and post-test design. This study was carried out in one national rehabilitation hospital targeting 41 primary family caregivers of patients with brain injuries. Group art therapy intervention was carried out three days per week comprising 12 sessions over four consecutive weeks. The experimental group (n = 20) received group art therapy, whereas the control group (n = 21) did not. We used a time difference method to minimize the risk of contaminating the control group by sampling sequentially. Results: For depression, although there was a significant difference after the intervention (t = 3.296, p = 0.004), the mean difference score was not statistically significant between the experimental group and the control group (t = 0.861, p = 0.395). The experimental group showed a significantly greater decrease in burden (t = 2.462, p = 0.020) and significantly greater improvement in self-efficacy (t = −6.270, p < 0.001) than the control group. Conclusions: Group art therapy may be an effective nursing intervention for primary family caregivers of patients with brain injuries.

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Effects of family participatory dignity therapy on the psychological well-being and family function of patients with haematologic malignancies and their family caregivers: A randomised controlled trial

Background: Strong family ties appear to buffer patient's and family members' difficult experiences during life and health crises. The family participatory dignity therapy programme, a patient-family-centred psychological intervention, was developed based on dignity therapy and performed by one therapist in the form of interview according to a specific question prompt. This study aimed to confirm the efficacy of the family participatory dignity therapy programme in improving the psychological well-being and family cohesion and adaptability of patients with haematologic malignancies and their family caregivers. Method: A single-blinded, two-arm parallel group, randomised controlled trial was conducted. Participants: Participants were patient-family caregiver dyads recruited from Fujian Medical University Union Hospital from March to September 2019. A total of 68 eligible dyads agreed to participate and were randomly assigned to the intervention group (n = 33) or control group receiving usual care (n = 35). Each pair of patient-family dyads in the intervention group received two or three interviews (each interview approximately lasting 45 to 60 min) performed by one therapist according to a specific question prompt containing 10 questions for patients and 10 corresponding questions for their family caregivers. To evaluate the effects of the intervention, we assessed patients' hope, spiritual well-being, and family cohesion and adaptability, as well as their family caregivers' depression, anxiety, and family cohesion and adaptability at baseline (T0), 1 week (T1), 4 weeks (T2), and 8 weeks post-intervention (T3) and compared the scores between the groups. A two-way repeated-measures analysis of variance was conducted to examine the effects of time, group, and their interaction. Results: For patients, there was a significant difference in hope (p = 0.001), spiritual well-being (p = 0.002), and family cohesion (p <0.001) and adaptability (p <0.001) between the intervention and control groups. The difference over time was also significant in family cohesion (p = 0.018) and adaptability (p = 0.003). The interaction effects were significant for hope (p = 0.034), spiritual well-being (p <0.001), and family cohesion (p <0.001) and adaptability (p <0.001). For family caregivers, there was a significant difference in anxiety (p = 0.037), depression (p = 0.001), and family adaptability (p = 0.036) between the intervention and control groups. Within groups, a significant difference in family adaptability (p = 0.012) was found. Moreover, the interaction effects were significant on anxiety (p = 0.001) and family cohesion (p = 0.038). Conclusions: The family participatory dignity therapy programme showed a positive effect on promoting patients' hope, spiritual well-being, and family cohesion and adaptability; amongst family caregivers, it decreased anxiety and depression, and enhanced family cohesion and adaptability. 

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The Effects of Counseling about Death and Dying on Perceptions, Preparedness, and Anxiety Regarding Death among Family Caregivers Caring for Hospice Patients: A Pilot Study

Purpose: This pilot study aimed to examine the influence of death counseling on perceptions, preparedness, and anxiety regarding death and dying among family caregivers of hospice patients. Methods: Death counseling developed based on the SPIKES model was provided to 37 family caregivers in a hospice and palliative care unit. Perceptions, preparedness, and anxiety regarding death were assessed with a self-administered structured questionnaire, and participants' scores before and after counseling were compared using the paired t-test. Results: Significant changes were found in perceptions, preparedness, and anxiety regarding death after counseling. Compared to before counseling, the scores for perceptions of death (t=-4.90, P<0.001) and preparedness for death and dying (t=-16.23, P<0.001) improved, while anxiety (t=3.72, P=0.001) decreased after counseling. Some changes were also found in the types of support that family caregivers needed to prepare for the death of their family members in the hospice care unit. Conclusion: The findings demonstrate that death counseling could help family caregivers prepare for the death of their loved ones. Hospice and palliative care providers should play a key role in supporting family caregivers of hospice patients by developing strategies for counseling.

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The effects of caregiver's burden on dynamic structure in disorder of consciousness families: An observational study

Introduction: Disorder of consciousness is a clinical condition due to severe brain damage. The impact of consciousness disorder on the family is characterized by a combination of biopsychosocial factors. The burden and suffering perceived by caregivers can cause psychological distress characterized by anxiety, depression, and physical illness. The aim of the study was to investigate the interaction between family dynamics and caregiver burden. Methods: We enlisted 35 caregivers of subjects in a minimally conscious state. Two skilled psychologists administered the Olson's Adaptability and Family Cohesion Assessment Scale and the Novak's Burden Inventory Caregiver Scale to assess family function and family burden, respectively. Results: We found that the caregiver burden correlates with the family adaptability and cohesion, as well as with enmeshment, rigidity, and disengagement. Conclusion: Findings suggest that the traumatic event does not affect the family structure. Families are able to maintain a balanced functioning and control distress.

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Effects of Caregiver Status, Coping Styles, and Social Support on the Physical Health of Korean American Caregivers

Purpose: This study investigated direct and indirect effects of caregiver status on the physical health of Korean American caregivers in terms of caregiver coping styles and the quantity and the quality of informal social support. Design and Methods: Using a sample of 87 caregivers and 87 matched noncaregivers, we analyzed a path model, employing both subjective (self-reported general health) and objective (blood pressure and cortisol levels) health indicators. For the intervening variables the path model employed coping styles and two aspects of social support (the quantity of informal social support and the quality of informal social support). Results: Our findings supported the association of caregiver status with poor health outcomes among Korean American caregivers. Of interest, the adverse effects of caregiver status on the physical health of caregivers were reported only with objective health markers (blood pressure and cortisol levels), not with subjective health indicators. The proposed indirect effects of caregiver status were supported only for cortisol levels, through the quality of informal social support. Implications: The demonstration of the physical health effects of caregiving in one of the nation's fastest growing ethnic groups, and the finding that these physiological effects occur without self-reported poor health, call attention to a potentially serious health problem in an understudied group providing family care to frail older family members. 

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Effects of an educational peer-group intervention on knowledge about dementia among family caregivers with a Turkish or Moroccan immigrant background: A cluster randomised controlled trial

Objective: The aim of this paper is to examine the effects of an educational peer-group intervention on knowledge about dementia, perceived ability to talk about it, received support and self-perceived pressure from informal care among family caregivers with a Turkish or Moroccan immigrant background who cared for a person with dementia. Methods: This paper is based on a cluster randomised controlled trial with three measures, including participants who knew or cared for a person with dementia. For the purpose of this study, a selection was made of participants who cared for a person with dementia. Knowledge about dementia, perceived ability to talk about dementia, support received and self-perceived pressure from informal care were assessed inthe intervention and the control condition. Multi-level analyses were conducted to examine the effects. Results: Data for 386 participants was analysed. Improvement in knowledge about dementia over time was significantly greater in the intervention condition than in the control condition. In the intervention condition, there was also a significant increase over time in the support received from home-care staff, which was not found in the control condition. No effects were found on other types of support received, the ability to talk about dementia or the self-perceived pressure from informal care. Conclusion: Offering a culturally sensitive educational peer-group education intervention enhances knowledge about dementia and has a small but positive effect on the support received from home-care staff in these groups. Practice Implications: Offering peer-group-based education about dementia to family caregivers with Turkish or Moroccan immigrant backgrounds is important for multicultural dementia care. 

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Effects of an attachment-based parent intervention on mothers of children with autism spectrum disorder: preliminary findings from a non-randomized controlled trial

Background: Caregivers of children with autism spectrum disorders (ASD) often experience difficulties in responding appropriately to the needs of those children, who typically express attachment in distinct and nonconventional ways. This highlights the need for an attachment-based approach targeted at caregivers of children with ASD. Circle of Security Parenting (COSP), an attachment-based parenting program, is designed to increase caregivers’ sensitivity to children’s attachment needs. The aim of this study was to provide verification of the effectiveness of COSP in mothers of children with ASD. Methods: This study was a non-randomized controlled trial. Sixty mothers of children with ASD aged 4–12 were recruited. Twenty mothers received the COSP intervention, while 40 did not. The characteristics of children in the control group were matched with those of the intervention group. To evaluate the outcomes of the intervention, changes in parental self-efficacy and mental health were assessed using the Tool to Measure Parenting Self-Efficacy (TOPSE) and the General Health Questionnaire-30 (GHQ-30). The children’s improvement in emotional and behavioral problems was assessed from the mothers’ perspective using the Child Behavior Checklist (CBCL). Both groups completed the assessments in parallel. Evaluations were compared between baseline (T1) and 6-month follow-up (T2). Results: Scores for self-efficacy and mental health of mothers and behavior of children were significantly improved from T1 to T2 in the intervention group, but not in the control group. Participants’ mental health was markedly worsened in the control group. Conclusion: This study demonstrated that the COSP program for mothers of children with ASD improved their parental self-efficacy and mental health, and reduced their subjective sense of difficulties related to their children’s behaviors. Our findings support the effectiveness of the attachment-based program for mothers of children with ASD, providing the groundwork for further studies of the attachment-based intervention for children with ASD and their families. Future studies with larger samples and randomization are also needed for direct evaluation of the improvement of children's attachment security, and for exploration of the synergistic relationship between various family support strategies and COSP. Trial Registration: This trial was registered with the University Hospital Medical Information Network Clinical Trial Registry (No. UMIN000039574)

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The effects of a psychosocial support program on perceived stress of family caregivers of patients with mental disorders

Background: Taking caring of patients with mental disorders is stressful and people who take care of these patients need to receive enough support and training to overcome this challenging situation. The present study was aimed at investigating the effects of a psychosocial support program on perceived stress of family caregivers of patients with mental disorders. Materials and Methods: This randomized controlled clinical trial was performed on 64 family caregivers of patients with mental disorders referred to Noor and Hazrat-e-Ali Asghar hospital in Isfahan, Iran, in 2018-19. The participants were randomly assigned to the intervention and control groups using a random number table. In the intervention group, the training program was held in 6 sessions of 90-minute training classes twice a week. Data were collected using a demographic characteristics form and the Perceived Stress Scale (PSS) before, immediately after, and 1 month after the intervention. Descriptive and inferential statistical tests such as Chi-square, Mann-Whitney, independent t-test, repeated measures ANOVA, and Kolmogorov-Smirnov test were used to analyze the data in SPSS software. Results: The result of the study showed that the total mean score of perceived stress in the intervention group was significantly less than the control group immediately after (F2=66.29, p<0.001) and 1 month after the intervention (F2=66.29, p<0.001). Conclusions: Delivering a training program on the different dimensions of support family caregivers need will reduce the perceived stress of family caregivers of patients with mental disorders. Therefore, the implementation of this intervention is recommended in this group of caregivers. 

 

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The effects of a multidisciplinary supportive program on caregiver burden among the family caregivers of patients with advanced chronic obstructive pulmonary disease: A randomized controlled field trial

Background & Objective: The family caregivers of patients with chronic obstructive pulmonary disease (COPD) experience heavy caregiver burden (CB). This study investigated the effects of a multidisciplinary supportive program on CB in the family caregivers of patients with advanced COPD. Materials & Methods: This randomized field trial was conducted in the pulmonary subspecialty clinic of Birjand University of Medical Sciences, in 2019. In the present study, 92 eligible family caregivers of COPD patients were randomly allocated into intervention and control groups. The study intervention included eight sessions. Three educational sessions on COPD were held by a pulmonary disease specialist and an experienced nurse in COPD care, two educational sessions were held on coping strategies by a psychiatric nurse and three peer support sessions. CB was assessed before, immediately after and two months after the study intervention. SPSS (v. 21.0) was used for data analysis. Results: CB significantly decreased in the intervention group (P=0.01). It did not change significantly in the control group (P=0.63). Between-group differences, with respect to the mean score of CB at the baseline (P=0.66) and the first posttest (P=0.72) were not significant. The mean score of CB in the second posttest was significantly lower in the intervention group, compared to the control group (P=0.007). Conclusion: Multidisciplinary supportive program is effective in reducing CB among the family caregivers of patients with advanced COPD. © 2021, This is an original open-access.

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Effects of a Modified Mindfulness-Based Cognitive Therapy for Family Caregivers of People With Dementia: A Randomized Clinical Trial

Background and Objectives: Family caregivers of people with dementia (PWD) experience high levels of stress resulting from caregiving. This study aimed to investigate the effects of a modified of Mindfulness-Based Cognitive Therapy (MBCT) for dementia caregiving. Research Design and Methods: 113 family caregivers of PWD were randomized to either the intervention group, receiving the 7-session modified MBCT for a period of 10 weeks with telephone follow-up or the control group, receiving the brief education on dementia care and usual care. The caregiving stress (primary outcome) and various psychological outcomes of caregivers and the behavioral and psychological symptoms of dementia (BPSD) in the care recipients were assessed and compared at baseline (T0), postintervention (T1), and at the 6-month follow-up (T2). Results: At both T1 and T2, the intervention group had a statistically greater improvement in stress (p = .02 and .03), depression (p = .001 and .04), anxiety (p = .007 and .03), and BPSD-related caregivers' distress (p = .003 and p = .04). A significant greater improvement was also demonstrated in mental health-related quality of life at T2 (p = .001) and BPSD of the care recipients at T1 (p = .04). The increased caregivers' level of mindfulness was significantly correlated with the improvement of various psychological outcomes at T1 and T2 with a correlation coefficient −0.64 to 0.43. Discussion and Implications: The modified MBCT enhanced the level of mindfulness in the caregivers and was effective to reduce the caregivers' stress and promote their psychological well-being during a 6-month follow-up. Future research is recommended to further examine its effects on the varieties of psychological and behavioral outcomes of both caregivers and care recipients and their dyadic relationships, as well as explore its mechanism of action in facilitating dementia caregiving.

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The effectiveness of ROM (Range of Motion) mobilization education on informal caregivers of stroke patients in the inpatient room

Introduction: Stroke is a neurologically deficit acute disease attributable to a focal vascular cause and is one of the leading causes of disability and death. Disability caused by stroke has a major impact on the family members as their formal caregivers, who in turn have to provide the treatment and care with sufficient knowledge. The purpose of this study was to determine the effectiveness of education on ROM (Range of Motion) mobilization techniques to the informal caregivers on stroke patients in the care room of RUSD Dr. Soekardjo, Tasikmalaya. Methods: This is a quantitative study and analysis was carried out using non parametric Wilcoxon tTest. The total sample for this study was 27 respondents and were selected by convenience technique. Result: The result revealed a significant difference in the mean value on the study of ROM mobilization education on caregivers before and after the intervention (p-value<0.05). Conclusion: Family caregivers should seek more information on managing stroke using mainly non-pharmacological components on stroke patients in order to minimize stroke reoccurrence and also to prevent further complications. 

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The Effectiveness of Group Hope Therapy Training on the Quality of Life and Meaning of Life in Patients with Multiple Sclerosis and Their Family Caregivers

Objective: Multiple sclerosis is a chronic, progressive neurological disease that, due to its special nature, has various physical and mental influences on the patients and their family's lives, decreasing the quality of life and threatening the meaning of life. The purpose of the present study was to evaluate the effectiveness of the group hope therapy training on the quality and the meaning of life in patients with multiple sclerosis and their family caregivers. Method: This quasi-experimental study was performed using pretest-posttest and control group. Thirty patients with multiple sclerosis along with 30 family caregivers who got low to medium scores on the Meaning in Life questionnaire by Steger (MLQ), Multiple Sclerosis Impact Scale (MSIS-29), and the Iranian Quality of Life questionnaire (IRQOL) for the caregivers were selected purposively. Then, the patients were randomly divided into two groups of 15 individuals in experimental and 15 individuals in control groups. The caregivers were grouped in the same manner. The protocol of group hope therapy training was carried out through eight two-hour sessions in two weeks separately on two experimental groups (the patients and the caregivers), and finally the posttest was given to four experimental and control groups. Results: The results of the data showed that the meaning of life in both the patient and the caregiver experimental groups increased significantly (P < 0.001), but there was no significant change in the patient and the caregiver control groups. Conclusion: Group hope therapy training is an effective intervention for improving the meaning of life and the quality of life in patients with multiple sclerosis. Also, any psychological intervention that aims to improve the quality of life in patients in an advanced stage of the disease requires attention to both the physical and the mental issues at the same time. Although group hope therapy training has improved the meaning of life in such patients, it did not have a significant impact on the quality of life. Therefore, paying attention to the stages of multiple sclerosis and the physical condition of the patients during the therapeutic intervention and adopting necessary complementary interventions seems to be essential. 

 

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Effectiveness of dyadic psychoeducational intervention for stroke survivors and family caregivers on functional and psychosocial health: A systematic review and meta-analysis

Objectives: Stroke is the third leading cause of disability worldwide, influencing the whole family's health and well-being. Dyadic (i.e., stroke survivor and family caregiver) psychoeducational intervention is a potential alternative to disease management and support, targeting at the dyads of stroke survivors and their caregivers as active participants in partnership. This review aimed to evaluate the current evidence on supporting the dyadic psychoeducational intervention for the functional and psychosocial health of stroke survivors' and their family caregivers. Design: Systematic review and meta-analysis Data sources: Nine English databases (Cochrane Library, Medline, CINAHL, PsycINFO, EMBASE, British Nursing Index, PubMed, Web of Science and Digital Dissertation Consortium) and two Chinese databases (CNKI and Wanfang) were searched to identify eligible studies published from their inception to April 2020. Additional relevant studies were identified from the reference lists and bibliographies of the identified articles and a manual search of relevant journals. Review methods: Studies were searched using keywords based on the 'PICOS' framework. The eligibility of individual full-text articles was independently assessed by two reviewers in accordance with the selection criteria. The risk of bias of the included studies was assessed using Cochrane RoB 2.0. The main outcomes were subjected to meta-analysis whenever possible; otherwise, narrative syntheses were conducted. Results: Eleven studies with 1769 stroke survivors and 1578 family caregivers were identified. The meta-analysis of pooled data suggested that the dyadic psychoeducational intervention had a significant immediate (<1 month) effect on family caregivers' burden (SMD = −0.25, 95% CI: −0.50 to −0.01, p = 0.04) and a long-term (≥6 months) effect on survivors' quality of life (SMD = −0.30, 95% CI: −0.53 to −0.07, p = 0.01). Subgroup pooled analyses indicated that the interventions initiated in hospitals could significantly improve the survivors' functional independence immediately after intervention (SMD = 0.40, 95% CI: 0.08 to 0.72, p = 0.01). Conversely, the interventions initiated at home did not significantly affect this functional outcome. Conclusions: This review supports the notion that the dyadic psychoeducational intervention can be effective in improving the stroke survivors' functional independence and their family caregivers' burden for a short period and the survivors' quality of life in the long run. However, its effectiveness is not conclusive because other psychosocial health outcomes for the stroke survivors and their family caregivers have not yet been found to significantly improve after intervention. Therefore, further large-scale randomised controlled trials with a high-quality design are warranted to evaluate their effectiveness in diverse functional and psychosocial health outcomes for stroke survivors and their family caregivers.

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The Effectiveness of Bereavement Support for Adult Family Caregivers in Palliative Care: A Meta-Analysis of Randomized Controlled Trials

Purpose: This meta-analysis aimed to summarize and synthesize the effectiveness of bereavement support for adult family caregivers in palliative care. Methods: Meta-analysis was conducted. The databases of the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Cochrane, Embase, Medline, PubMed, Scopus, and Web of Science were comprehensively searched from inception until January 2020. This study followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and standard methods for conducting a meta-analysis. Data analysis was performed using Comprehensive Meta-analysis version 3.0, and the random-effects model was adopted. Findings: In total, 19 randomized controlled trials with an overall sample size of 2,690 participants met the inclusion criteria. The study showed that bereavement support had a significant effect on reducing grief (Hedges' g score = -0.198; 95% confidence interval [CI] -0.310 to -0.087), depression (Hedges' g score = -0.252; 95% CI -0.406 to -0.098), and anxiety (Hedges' g score = -0.153; 95% CI -0.283 to -0.023); however, high heterogeneity was present. No statistically significant difference was shown for traumatic feelings. Based on moderator analysis, a group format was more effective for grief, a combined individual and group format for depression, and an individual format for anxiety. Bereavement support was more effective when delivered by professionals, when delivered in more than six sessions, and need to be evaluated within 6 months. Conclusions: Bereavement support was effective in reducing grief, depression, and anxiety. The majority of the included studies had moderate heterogeneity, which limited the comparability of the evidence. Therefore, more robust randomized controlled trials are needed to confirm these study results. Clinical Relevance: This meta-analysis provides evidence that bereavement support delivered in the palliative care setting is effective for reducing grief, depression, and anxiety. Nurses and other healthcare professionals can make recommendations for adult family caregivers based on this study in reducing psychological symptoms due to a loss in the palliative care domain.

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Effectiveness of a support intervention for family caregivers and stroke survivors*

Objective: to analyze the effectiveness of a support intervention on the burden and stress of family caregivers and on the stroke survivors’ independence level, compared to the Control Group. Method: a quasi-experimental study conducted with 37 participants (Intervention Group, n=20; and Control Group, n=17). The intervention lasted 8 months. The outcomes of the caregivers (burden and stress) and of the survivors (independence level) were measured by the Zarit, Perceived Stress and Katz scales, at the following moments: pre-intervention, the fourth month of the intervention and post-intervention. The differences of these outcomes between groups and intra-group and the effect size were calculated using the Mann-Whitney and Friedman tests (Bonferroni adjustment by Wilcoxon) and the Kendall’s W coefficient. Results: the Intervention Group reduced burden (p=0.039) and stress (p=0.009), mainly, after 8 months of intervention, which was not observed in the Control Group. The independence level did not change between the groups or moments (p>0.05). The intervention presented moderate effect size (p=0.45 and p=0.54). Conclusion: the intervention was effective to reduce the burden and stress of family caregivers, but did not alter the stroke survivors’ independence level, when compared to the Control Group. 

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Effective integration of caregivers and families as part of the care team for people with cancer

Informal caregivers (referred to as caregivers within this article) play a significant part in enabling community-based models of cancer care and survivorship, whereby patients manage much of their disease and treatment outside of clinical settings. Caregivers are fundamental to healthcare in Australia, with a replacement value of $77.9 billion. Caregivers are a highly important group as they allow people diagnosed with cancer to remain at home and out of hospitals for longer than would have been possible without the caregivers involvement. [...]impacts on quality of life, a lack of sleep, reduced time for themselves and impacts on their own relationships can contribute to caregivers' levels of burden and distress. Given the experience of care provision, it is not surprising that cancer caregivers report high levels of anxiety, distress and burden. However, it is also important to acknowledge that many caregivers are able to identify positive aspects to the role, including allowing the person with cancer to remain home for longer and spending time together. The role of the general practice team The general practice team - including GPs, practice nurses, allied health professionals and administrative staff - is ideally positioned to support cancer caregivers. There are three key barriers to identifying and supporting caregivers in primary care. First, taking on the care of another person is often gradual, and it is hard to recognise the commencement of caregiving. Second, as the health of the person with cancer deteriorates, the caring role becomes all-encompassing and caregivers are unable to manage their own needs and supports. Finally, there is ambiguity regarding the legitimacy of caregiver needs. Health professionals have noted that caregivers can stand on the sidelines and be outsiders, with health professionals facing their own challenges to incorporate caregivers into the unit of care. There are two key ways in which GPs and others in the primary healthcare team can deliver support for caregivers. Acknowledging and integrating caregivers as part of the care team As caregivers are not explicitly involved in the relationship between the patient and healthcare provider, they can be rarely invited to participate. Given that the oncology team - including oncologists, hospital-based specialists, nurses and allied health professionals - can be focused on the patient's physical and mental health, the GP is someone who is well positioned to be able to check on the caregiver's physical and mental health.

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Effect of main family caregiver’s anxiety and depression on mortality of patients with moderate-severe stroke

Background: Anxiety and depression are common mental illness in stroke caregivers, resulting in significant stress to the emotion health of caregivers. Caregivers’ emotion can seriously affect the recovery rate of stroke patient, therefore, how to control and affect the caregivers’ anxiety and depression is of great importance. Method: Here three multiple centers observation and validation study were performed to screen out the risk factors for development of anxiety and depression in main family caregiver, and the effect of anxiety and depression of family caregivers on 6-month mortality of patients with moderate-severe stroke. Results: The severity of the stroke, the duration of care time and the medical payment associated with increased risk of anxiety and depression. Anxiety and depression of main family caregivers are associated with increased risk 6-month mortality of patients with moderate-severe stroke. Conclusions: Therefore, the support provided to the family caregivers might have positive effect on prognosis of the patients with stroke.

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Effect of handholding on heart rate variability in both patients with cancer and their family caregivers: a randomized crossover study

Background: Many family caregivers of patients with cancer feel guilty about self-care. A meaningful relationship with patients reduces such negative feelings and functions as self-care for family caregivers. Moreover, handholding improves autonomic functions in non-cancer patients. However, the effects of handholding on both patients with cancer and family caregivers remain unknown. Methods: We evaluated the effects of handholding on heart rate variability (HRV) in patients with cancer and their family caregivers. This randomized crossover study divided patients with cancer and their family caregivers into two trial groups: Handholding trial (the family caregiver holds the patient’s hand for five minutes) and Beside trial (the family caregiver stays beside the patient without holding their hand). The study included 37 pairs of patients with cancer who received treatment in the cancer department of a university hospital in Japan and their family caregivers (n = 74). The primary end-point was the change in HRV before and during the intervention. Results: The median performance status of the patients was 3. An interaction was observed between trials in the standard deviation of the normal-to-normal interval (SDNN) of HRV for family caregivers (F = 7.669; p = 0.006), and a significant difference in time course was observed between the trials (before p = 0.351; during p = 0.003). No interaction was observed between trials in the SDNN for patients (F = 0.331; p = 0.566). Only a main effect in time course (F = 6.254; p = 0.014) was observed. SDNN increased significantly during the intervention in both trials (Handholding trial: p = 0.002, Beside trial: p = 0.049). Conclusions: Handholding improves autonomic functions of family caregivers and may function as self-care for family caregivers. Trial registration: UMIN000020557. Registered on January 15, 2016. 

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Effect of family nursing therapeutic conversations on patients with heart failure and their family members: Secondary outcomes of a randomised multicentre trial

Aims and objectives: This study evaluates the short‐term (3 months), medium‐term (6 months) and long‐term (12 months) effect of family nursing therapeutic conversations added to conventional care versus conventional care on social support, family health and family functioning in outpatients with heart failure and their family members. Background: It has been emphasised that increased social support from nurses is an important resource to strengthen family health and family functioning and thus improve the psychological well‐being of patients with heart failure and their close family members. Design: A randomised multicentre trial. Methods: A randomised multicentre trial adhering to the CONSORT checklist was performed in three Danish heart failure clinics. Consecutive patients (n = 468) with family members (n = 322) were randomly assigned to either the intervention or control group. Participants were asked to fill out family functioning, family health and social support questionnaires. Data were measured ahead of first consultation and again after 3, 6 and 12 months. Results: Social support scores increased statistically significant both at short‐term (p = 0.002) medium‐term (p = 0.008) and long‐term (p = 0.018) among patients and their family members (p = <0.001; 0.007 and 0.014 respectively) in the intervention group in comparison with the control group. Both patients and their family members reported increased reinforcement, feedback, decision‐making capability and collaboration with the nurse. No significant differences between the intervention and control groups were seen in the family health and family functioning scales among patients and family members. Conclusions: Family nursing therapeutic conversations were superior to conventional care in providing social support from nurses. Relevance to clinical practice: Family nursing therapeutic conversations are suitable to improve the support from nurses among families living with heart failure.

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Effect of an Educational Support Programme on Caregiver Burden Among the Family Members of Patients Undergoing Coronary Artery Bypass Graft Surgery

Objectives: The family caregivers of patients undergoing coronary artery bypass graft (CABG) surgery experience considerable physical and emotional distress. This study aimed to investigate the effect of an educational support programme on caregiver burden among the family caregivers of patients undergoing CABG surgery in Iran. Methods: This non-randomised controlled clinical trial was conducted from January to April 2017 at a cardiovascular centre in Tehran, Iran. A total of 80 family caregivers of patients undergoing CABG surgery were sequentially selected and non-randomly assigned to intervention and control groups. The control group received routine care, whereas the intervention group received additional education sessions at baseline, prior to surgery, the day after surgery and before discharge. Caregiver burden was compared at baseline and six weeks post-discharge using the Persian-language versions of the Caregiver Burden Inventory (CBI) and Katz Index of Independence in Activities of Daily Living (IADL). Results: A significant difference was observed between family caregivers in the control and intervention groups with regards to pre-post differences in mean CBI scores (+1.67 ± 19.23 versus +17.45 ± 9.83; P <0.001), with an effect size of −1.14. In addition, there was a significant increase in mean post-discharge IADL scores among CABG patients in the intervention group compared to the control group (4.42 ± 1.05 versus 3.07 ± 1.09; P <0.001). Conclusion: An educational support programme significantly reduced caregiver burden among the family members of patients undergoing CABG surgery in Iran. As such, in addition to routine care, healthcare providers should provide educational support to this population to help mitigate caregiver burden. 

 

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The Educational Needs of Family of Patients Discharged from the Intensive Care Units: The Viewpoints of Nurses and the Patients' Families

Background: Thousands of patients are admitted to the intensive care units annually, which are stressful for patients and their families. The discharged patients and their families face different challenges in the caring process of the patients. Objectives: This study aimed to determine the educational needs of the families of patients discharged directly home from the postintensive care units and to compare the views of families and nurses about these needs. Method: This was a cross-sectional study. One hundred forty nurses and 140 family members of the patients discharged from intensive care units participated in the survey by convenience sampling method. A questionnaire of sociodemographic information and a researcher-made questionnaire on the educational needs of the family of patients discharged from the postintensive care units were used for data collection. Results: The mean total score of the educational needs of the patients’ families was 31.81 and 35.33 from views of families and nurses, respectively. Nurses significantly estimated the educational needs of families more than what they did (). The families and nurses reported the educational needs of self-care as well as nutrition and medicine at the highest level, respectively. Both groups reported the educational needs of defecation at the lowest level. Nurses estimated higher educational needs in all dimensions, except for the patient’s mental health and family self-care than families ().  Conclusion: According to the present study, the educational needs were high from the views of nurses and families. Family need assessment is essential in designing and applying instructional interventions. Given the high level of family needs, implementing educational and practical interventions is necessary to enhance their skills.

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Dying within dyads: Stress, sense of security and support during palliative home care

Objectives: To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security. Methods: 144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. We analysed similarity patterns of answers within dyads (correlations) as well as dissimilarities, expressed as the difference between within-dyad responses. The latter were subjected to a model-building procedure using GLM, with 13 sociodemographic and clinical characteristics as independent variables. Results: Within dyads, patients and family caregivers scored similar in their perception of support and sense of security with care. There was also dissimilarity within dyad responses in their perception of stress and support that could be attributed to sociodemographic or clinical characteristics. When patients scored higher levels of stress than family caregivers, the family caregiver was more likely to be male. Also family caregiver attachment style (attachment anxiety), patient age and the relationship of the family caregiver to the patient explained dissimilarities within the dyads. Conclusions: Patients and family caregivers within the dyads often, but not always, had similar scores. We suggest that it is important that the healthcare staff identify situations in which perceptions within the dyads regarding stress and perception of support differ, such that they can recognise patients' and family caregivers' unique needs in different situations, to be able to provide adequate support and facilitate dyadic coping. 

 

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Dyadic effects of family-functioning and resilience on quality of life in advanced lung cancer patients and caregivers: An actor-partner interdependence mediation model

Background: Lung cancer as a stressful event profoundly impacts the entire family, especially patients and their family caregivers. Methods: This study uses a dyadic analysis approach to explore the dyadic effects of family functioning on the quality of life (QoL), and whether resilience acts as a mediator in advanced lung cancer patient-caregiver dyads. This was a cross-sectional study, and 287 dyads of advanced lung cancer patients and their caregivers were enrolled. Family-functioning, resilience, and QoL were assessed by the General Functioning subscale of the Family Assessment Device (FAD), the 10-item Connor-Davidson Resilience Scale, and the Short Form-8 (SF-8) Health Survey, respectively. Data were analyzed using the actor-partner interdependence mediation model. Results: This study found that, for patients and caregivers, resilience mediates the actor effects of family-functioning on QoL. That is, family-functioning was positively related to their resilience, which improved QoL. Another important finding is that caregivers' family-functioning had significant indirect effects on patients' QoL through their resilience. Positive family functioning perceived by patients and caregivers can improve their QoL by developing their own resilience. Furthermore, family-functioning perceived by caregivers can also improve patients' QoL through their resilience. Medical staff should identify vulnerable patients and caregivers with poorer family-functioning and resilience, and make focused intervention to improve the QoL of both lung cancer patients and their family caregivers. Conclusions:  Positive family functioning perceived by patient-caregiver dyads can improve their QoL by developing their resilience.  Family-functioning perceived by caregivers can also improve patients' QoL through their resilience.

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The DWQ-EMR Embedded Tool to Enhance the Family Physician-Caregiver Connection: A Pilot Case Study

Background: The number of family caregivers to individuals with dementia is increasing. Family physicians are often the first point of access to the health care system for individuals with dementia and their caregivers. Caregivers are at an increased risk of developing negative physical, cognitive and affective health problems themselves. Caregivers also describe having unmet needs to help them sustain care in the community. Family physicians are in a unique position to help support caregivers and individuals with dementia, but often struggle with keeping up with best practice dementia service knowledge. Methods: The Dementia Wellness Questionnaire was designed to serve as a starting point for discussions between caregivers and family physicians by empowering caregivers to communicate their needs and concerns and to enhance family physicians’ access to specific dementia support information. The DWQ aims to alert physicians of caregiver and patient needs. This pilot study aimed to explore the experiences of physicians and caregivers of people using the Questionnaire in two family medicine clinics in Ontario, Canada. Interviews with physicians and caregivers collected data on their experiences using the DWQ following a 10-month data gathering period. Data was analyzed using content analysis. Results: Results indicated that family physicians may have an improved efficacy in managing dementia by having dementia care case specific guidelines integrated within electronic medical records. By having time-efficient access to tailored supports, family physicians can better address the needs of the caregiver–patient dyad and help support family caregivers in their caregiving role. Caregivers expressed that the Questionnaire helped them remember concerns to bring up with physicians, in order to receive help in a more efficient manner.

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Dual caregiving by grandmothers with older relatives: Personal factors influencing health and stress

Background: Grandmothers in the "sandwich generation" are considered as those women who are potential caregivers for two generations: older relatives and grandchildren. Methods: With the goal of understanding the factors that affect their stress and health, 149 women from southwestern Spain were interviewed using an ad hoc questionnaire that included standardized scales and subscales. Results: The results showed that age, coping strategies based on emotional support and acceptance, as well as optimism and social support improved the health of these women by reducing their perceived stress. Although caring for older relatives is related to family conflicts and worse health, conversely, caring for grandchildren is related to slightly better health. Conclusions: The results are useful for planning psychological interventions with these women and highlight the need to include family interventions.

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Double child and elder care responsibilities and emotional exhaustion of an older sandwiched generation: The mediating effect of self-care

Background: The number of informal caregivers over the age of 50 who care for multiple family members including children and elderly relatives – a practice termed 'double care' – has steadily increased in Asian countries. Despite the rise in depression and stress among such caregivers, few studies have examined factors that may mitigate their emotional exhaustion. Methods: This research examines relationships between care responsibilities and emotional exhaustion, and the mediation effects of self-care on people in their 50s through 70s who provide care to multiple family members including children and elderly parents or relatives. The participants of this study were 183 people who were providing double care. The authors used care responsibilities as the independent variable, self-care as a mediator, and emotional exhaustion as the dependent variable. Results: Results indicate that care responsibilities significantly affect emotional exhaustion, and that emotional exhaustion is mediated by self-care. Conclusions: The findings suggest that attention to self-care may reduce emotional exhaustion among caregivers in this older age group.

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Does the advice requested by carers of people who live with dementia reflect the level of commissioned post-diagnostic support? A retrospective evaluation of calls to the Me2U dementia day centre 24-hour advice line

Aims: The aim was to examine the reasons for advice requests by carers of people who live with dementia (PLWD) that attend the Me2u dementia day centre in order to identify key explanatory themes. We hypothesised that requests were related mainly to coordinating care and clinical issues due to limited post-diagnostic support (PDS) in our area. Background: The Me2u dementia day centre (Merseyside) cares for PLWD and also supports carers. As part of the service, a 24-hour advice line is included for PLWD and their carers who attend the centre. Locally, there is limited PDS and most carers navigate the health and social care system alone mirroring the findings by the National Collaborating Centre for Mental Health (NCCMH). Method: We undertook a retrospective evaluation of 244 advice calls, from 64 carers, between 01/06/2019 and 31/12/2019. We analysed time of call, type of advice, type of dementia, age and whether the advice was for the PLWD or for the carer. Results: Of the 244 calls, the most common time to call was between 09.00 - 14.00 (n = 168; (68.8%) peak 09.00 - 10.00 (n = 38). Average age of the person about whom the advice was sought was 79.08 years. 91.4% of the advice calls related to PLWD (most common dementia Alzheimer's) and 8.6% to the carer only. The mean number of calls per person was 3.8 (range 1–24).Advice data were grouped into 9 broad themes namely, related to symptoms/behaviour (32.79%, n = 80), request for Me2u to coordinate care (20.08%, n = 49), general advice (14.75%, n = 36), personal care (9.42%, n = 23), carer only advice (8.60%, n = 21), social issues (6.14%, n = 15), social care (4.50%, n = 11), safeguarding (2.46%, n = 6), non-health and social care issue (1.23%, n = 3).ConclusionReasons for limited/poor PDS given by the NCCMH are; absence of named coordinators of care, over-reliance on families and carers to manage and facilitate appointments, poor recognition and management of comorbidities. This data show that 52.87% of calls were for clinical advice and coordination of care reflecting NCCMH findings. The interventions post-call reduced the impact on providers of urgent care. Conclusions: These findings provide support for the provision of a [24-hour] advice line as a routine part of post-diagnostic support services, especially in areas that have limited or poor PDS. Commissioners of PDS services in areas that have limited or poor PDS should make this a priority to prevent unplanned admissions to hospital and carer breakdown.

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Do informal caregivers experience more burnout? A meta-analytic study

Background: Informal caregivers often report exhaustion when providing care, which can be related to forms of burnout. Yet, there is no systematic inventory of studies comparing caregivers and non-caregivers in terms of burnout. Methods: For the present meta-analysis, studies comparing burnout in informal caregivers and non-caregivers were screened and included. Findings: Two categories of studies were found: those on family care burnout (spousal or parental burnout) and those on professional burnout (mostly in healthcare). For family care burnout studies, informal caregivers reported more emotional exhaustion, and, to a lesser extent, depersonalization and reduced personal accomplishment than non-caregivers. For studies on professional burnout, workers providing informal care also reported more emotional exhaustion than workers not providing such a care. Conclusion: Overall, the results indicate that providing informal care represents a risk for role burnout. In family care burnout studies, these results confirm the assumption that providing informal care adds extra weight on the individuals’ shoulders. In professional burnout, these results support the role accumulation theory, pointing that an additional weight in one’s role, i.e., providing informal care, has an impact on another role, work. This work emphasizes the consideration of the multifaceted impact that the caregiving role can have on the individual. 

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Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease

Objectives: This study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. Methods: A cross sectional design was used with a convenience sample of 110 carers that participated in this study. Participants were recruited from Spanish hospitals and rare diseases organizations. Economic costs and sociodemographic aspects were assessed using the economic costs questionnaire and the sociodemographic questionnaire. Physical and psychological health was evaluated using the CarerQol-7D, PHQ-15, Barthel Index, Zarit Overload Scale and Satisfaction with Life Scale. Results: Carers of children with neuromuscular disease spent a large percentage of their annual income in physical therapy, psychological care and speech therapy. Informal costs differed according to the degree of dependency of the child. These were higher in those caregivers whose child under their care presented low functional independence. The loss of work productivity was related to marital status, use of professional services and the child’s dependency. Finally, carers who were female, single or separated and without a job showed worse physical and psychological health. Conclusions: The results highlighted that carers have to face a number of high costs because of the non-existence of social protection and due to the child’s diagnosis. 

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Dignity of informal caregivers of migrant patients in the last phase of life: a qualitative study

Background: A key aim of palliative care is to improve the quality of life of patients and their families. To help ensure quality of life for the families of patients with migrant backgrounds, this study sought insights into the dignity of informal caregivers in migrant communities. This could improve understanding of family-centered care for migrant patients. Methods: Twenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically. Results: The dignity of the patient and that of their informal caregivers were found to be strongly interrelated. Most important for the dignity of caregivers was ensuring good care for their patients and preserving the patients' dignity. Ensuring good care involved advocating for good and dignified care and for satisfaction of a patient's wishes. For many informal caregivers, it also included delivering care to the patient by themselves or together with other family members, despite having to give up part of their own lives. Providing care themselves was part of maintaining a good relationship with the patient; the care was to cater to the patient's preferences and help preserve the patient's dignity, and it could be accompanied by valuable aspects such as times for good conversations. Positive interaction between an informal caregiver and a patient positively influenced the informal caregiver's dignity. Informal caregiver and patient dignity were often compromised simultaneously; when informal caregivers felt healthcare professionals were undermining a patient's dignity, their own dignity suffered. According to informal caregivers, healthcare professionals can help them preserve dignity by taking seriously their advice about the patient, keeping them informed about the prognosis of the disease and of the patient, and dealing respectfully with differences in values at the end of life. Conclusion: The dignity of migrant patients' informal caregivers in the last phase of a patient's life is closely entwined with ensuring good care and dignity for the patient. Healthcare professionals can strengthen the dignity of informal caregivers by supporting their caregiving role.

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A Digital Mobile Community App for Caregivers in Singapore: Predevelopment and Usability Study

Background: With increasing life expectancy and aging populations, the global prevalence of chronic diseases and the long-term care required for people with comorbidities is rising. This has led to an ever-growing need for caregiving. Previous literature has shown that caregivers face problems of isolation and loneliness. However, many health organizations mainly focus their efforts on in-person community groups that require participants to meet physically. This is not always convenient or accessible for caregivers who are often juggling caring for their care recipient with family and work responsibilities. Objective: With medical advancements such as the proliferation of mobile phones and internet technology, caregivers may have opportunities for easier access to resources and support. Technological innovations could help empower the caregiving community to seek assistance for improving their quality of life at their convenience. A community network app called Caregivers’ Circle was conceptualized in response to the needs of the caregivers on a day-to-day caregiving journey. This paper traces the predevelopment inquiry and technical details of this app to provide a clear understanding of its implementation along with a usability study to gauge user opinion of the app within Singapore. Methods: A predevelopment survey was conducted to identify specific needs of caregivers and gaps in the currently available web-based community networks. The survey consisted of questions on demographical data, health-related issues of the care recipient, mental and physical health–related issues of the caregiver, digital media use, information seeking, and support. This pre–app development survey was completed by 103 caregivers. Qualitative enquiries were also conducted with caregivers within Singapore to identify issues related to caregiving, support provided, and what caregivers would want from a caregiving mobile app. Results: From the feedback garnered from the caregivers, the developers were able to identify several caregivers’ needs and gaps within the current support networks. This feedback was integrated into the mobile app called Caregivers’ Circle upon development. The features of this app include a public forum for community discussions, a marketplace to buy and sell items, care groups to hold private discussions with friends or other users of the app, and a friends feature to search and add new caregiving friends. Conclusions: In general, the caregivers liked the Caregivers’ Circle app and were confident that this app could help them have a better quality of life. The Caregivers’ Circle app is unique in its integrated approach. The integration of many features that caregivers need on a daily basis into an easy app can save their time as well as help them navigate their life smoothly.

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Differences in Burden Severity in Adult-Child Family Caregivers and Spousal Caregivers of Persons with Dementia

Background: Researchers are continuing to focus on the nature and sources of burden of family caregivers of persons living with dementia. Caregiving stress and burden are assessed and addressed by social workers, including at high-risk times such as hospitalization. Methods: This study tested whether adult-child family caregivers experience greater perceived burden than spousal caregivers, accounting for risks of acute stress which can accompany hospitalization for their care recipient, where social workers may be meeting with family caregivers for the first time. Family caregivers (N = 76; n = 42 adult-child; n = 34 spouse) were recruited during care-recipient clinical treatment. The settings of care included an outpatient memory care program and an inpatient geriatric psychiatry service. Results: Results showed that adult-child caregivers reported greater burden as compared with spousal caregivers, but no differences regarding depressive symptoms, perceived stress, or grief. After controlling for demographics and location of care, being an adult-child caregiver remained a predictor of greater burden severity. Being an adult-child family caregiver may place an individual at increased risk for experiencing high burden. Conclusions: These findings suggest socials workers should consider how adult-child caregivers may benefit from strategies to address and reduce burden, beyond those typically offered to spousal caregivers.

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Differences among Caregivers on Coping Resources and Mental Health

Background: Given the growing number of family members who provide care to adults with a disability or illness, this study examined differences in coping resources and mental health among family caregivers of persons with various health conditions. Methods: Within the context of Ensel and Lin’s stress paradigm, 234 family caregivers participated in an online study by completing validated measures of resourcefulness, spiritual practices, caregiver burden, anxiety, and depression. Caregivers were categorized into nine groups according to their care recipient’s condition. Results: The groups differed significantly on burden and resourcefulness. Greatest burden and lowest resourcefulness were found in caregivers of persons with traumatic brain injury, stroke, and dementia. Caregivers across all groups were found to be at a similarly high risk for anxiety and depression. Conclusions: These results provide insights for tailoring interventions for caregivers, particularly those whose care recipients have traumatic brain injury, stroke, or dementia, who may benefit from resourcefulness training.

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Development of the Readiness for Home-Based Palliative Care Scale (RHBPCS) for Primary Family Caregivers

Background: In Chinese or Eastern society, most end-of-life (EOL) patients still choose to die at home. However, primary family caregivers usually do not prepare themselves to face the death of patients. Therefore, a measurement of the readiness for home-based palliative care for primary family caregivers is needed. Methods: In this study, the readiness for home-based palliative care scale (RHBPCS) for primary family caregivers was developed to assess the readiness of primary family caregivers. This study recruited 103 participants from five branches of one municipal hospital system. The reliability and validity of the RHBPCS was evaluated using expert validity examination, confirmatory factor analysis (CFA), and item analysis. Results: The results showed that the RHBPCS had strong goodness-of-fit and good reliability and validity. Conclusions: In summary, the RHBPCS is suggested for assessing the readiness for home-based palliative care of primary family caregivers.

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Development of a Decision Aid for Patients and Families Considering Hospice

Background: Hospice is underutilized. Miscommunication, decisional complexity, and misunderstanding around engaging hospice may contribute. Shared decision making (SDM), aided by patient decision aids (PtDAs), can improve knowledge and decision quality. Currently, there are no freely available hospice-specific PtDA to facilitate conversions between patients and providers about hospice care. Objective: To develop a theory-based and unbiased hospice specific PtDA. Design: Guided by the Ottawa Decision Support Framework and International Patient Decision Aid Standards, we used a theory-driven, eight-step, iterative, user-centered approach with multistakeholder input to develop a hospice-specific PtDA for anyone facing end-of-life decisions. Subjects: Feedback was obtained from a 10-member Patient Advisory Panel composed of lay patient advisors; focus groups of hospice providers, family caregivers, and patients; and the Palliative Care Research Group at University of Colorado Hospital consisting of palliative care physicians, midlevel providers, nurses, social workers, chaplains, and researchers. Results: There are many challenges in developing an unbiased hospice decision aid, including (1) balancing the provision of education (eligibility, payment) with decisional support, (2) clarifying values and incorporating emotion, (3) ideally representing the potential downsides of hospice, and (4) adequately capturing and describing care alternatives to hospice. Within this context, we developed a 12-page article and 17-minute video PtDAs. The PtDA openly acknowledges the emotional complexity of the decision and incorporates values clarification techniques to help decision makers reflect and evaluate their goals and preferences for end-of-life care. Conclusions: Hospice decision making is complex and emotional, demanding high-quality SDM aided by a formal PtDA. This work resulted in a freely available article and video PtDA for patients considering hospice. The effectiveness and implementation of these tools will be studied in future research. Clinical Trials Registration: (NCT03794700 & NCT04458090).

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Development and Validation of the Family Quality of Life in Dementia Scale

Background and Objectives: People with Alzheimer's disease and related dementias (ADRD) exhibit losses in daily function, as well as behavioral and psychological symptoms, that place a great deal of burden on family caregivers and exert a major influence on the quality of life of these individuals and their families. Despite years of intervention research in the field, there are few studies related to the impact of providing care for a person with ADRD on the family as the unit of analysis. While numerous findings have reported the effects of the chronic stress of caregiving for an individual, analysis of family quality of life is a concept that has been generally overlooked in the ADRD field. The purpose of the present study was to develop and test the Family Quality of Life in Dementia (FQOL-D) scale. Research Design and Methods: Face validity was obtained via a Delphi survey of a multidisciplinary team of dementia providers and researchers; initial psychometric evaluation of the instrument was obtained via family respondents (N = 244). Results: Internal consistency and reliability were established for the instrument. The FQOL-D scale exhibited excellent factorability and concurrent validity with existing scales assessing family psychosocial measures. Discussion and Implications: The initial psychometric testing of the FQOL-D instrument is favorable. Additional use of the FQOL-D instrument in health care settings is warranted to evaluate further the clinical utility of the instrument.

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Development and validation of a caregiving needs inventory for family members before their older relative's knee joint-replacement surgery

Objectives: This study had two purposes: to develop an instrument for assessing family members' caregiving needs before their older relative's knee joint-replacement surgery and to determine instrument psychometrics. Methods: In phase 1 of this validation study, we generated 34 items based on previous interviews with 138 family caregivers of patients with knee osteoarthritis (OA), an intensive literature review, and the authors' clinical experiences. In phase 2, we examined the content and face validities of the 34-item Family Members' Caring Needs Inventory (inventory) to develop a 32-item inventory. In phase 3, 150 family members of outpatients with knee OA were recruited from three hospitals in northern Taiwan and surveyed with the inventory to determine its internal consistency reliability and test–retest reliability. Results: The final 30-item inventory had excellent content and face validities. Its factor analysis yielded a five-factor solution, accounting for 82.9% of the variance. The inventory had Cronbach's α = 0.97 and intraclass correlation coefficient = 0.93, indicating very high internal consistency reliability and test–retest reliability. The inventory was perceived as easy to complete and yielded highly acceptable validity and reliability levels. After cross-cultural adaptation, this tool may be used to assess family members' caregiving needs before their relative's knee-replacement surgery. The role of family members and spouses in supporting patients with osteoarthritis (OA) is crucial. After cross-cultural adaptation, the Family Members' Caring Needs Inventory may be used by health care providers to assess and provide relevant information to meet the needs of family members caring for an older relative with knee OA. Conclusions: This assessment and specific caregiving information for family members of older knee OA patients may promote patients' quality of life and decrease their OA-related burden.

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Development and psychometric properties of surveys to assess patient and family caregiver experience with care transitions

Background: The purpose of this study was to develop and administer surveys that assess patient and family caregiver experiences with care transitions and examine the psychometric properties of the surveys. The surveys were designed to ask about 1) the transitional care services that matter most to patients and their caregivers and 2) care outcomes, including the overall quality of transitional care they received, patient self-reported health, and caregiver effort/stress. Methods: Survey items were developed based on a review of the literature, existing surveys, focus groups, site visits, stakeholder and expert input, and patient and caregiver cognitive interviews. We administered mail surveys with telephone follow up to patients recently discharged from 43 U.S. hospitals. Patients identified the caregivers who helped them during their hospital stay (Time 1 caregiver) and when they were home (Time 2 caregiver). Time 1 and Time 2 caregivers were surveyed by telephone only. The psychometric properties of the survey items and outcome composite measures were examined for each of the three surveys. Items that performed poorly across multiple analyses, including those with low variability and/or a high missing data, were dropped except when they were conceptually important. Results: The analysis datasets included responses from 9282 patients, 1245 Time 1 caregivers and 1749 Time 2 caregivers. The construct validity of the three proposed outcome composite measures—Overall Quality of Transitional Care (patient and caregiver surveys), Patient Overall Health (patient survey) and Caregiver Effort/Stress (caregiver surveys) —was supported by acceptable exploratory factor analysis results and acceptable internal consistency reliability. Site-level reliability was acceptable for the two patient outcome composite measures, but was low for Caregiver Effort/Stress (< 0.70). In all surveys, the Overall Quality of Transitional Care outcome composite measure was significantly correlated with other outcome composite measures and most of the single-item measures. Conclusions: Overall, the final patient and caregiver surveys are psychometrically sound and can be used by health systems, hospitals, and researchers to assess the quality of care transitions and related outcomes. Results from these surveys can be used to improve care transitions, focusing on what matters most to patients and their family caregivers.

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Development and evaluation of an intervention on suPpoRting infOrmal cAregivers of older people with early CogniTIVe declinE (PROACTIVE): a study protocol based on the Medical Research Council framework

Introduction: Caring for people with cognitive problems can have an impact on informal caregivers’ health and well-being, and especially increases pressure on healthcare systems due to an increasing ageing society. In response to a higher demand of informal care, evidence suggests that timely support for informal caregivers is essential. The New York University Caregiver Intervention (NYUCI) has proven consistent effectiveness and high adaptability over 30 years. This study has three main objectives: to develop and evaluate the Flemish adaptation of the NYUCI in the context of caregiving for older people with early cognitive decline; to explore the causal mechanism of changes in caregivers’ health and well-being and to evaluate the validity and feasibility of the interRAI Family Carer Needs Assessment in Flanders. Methods and analysis: Guided by Medical Research Council framework, this study covers the development and evaluation phases of the adapted NYUCI, named PROACTIVE—suPpoRting infOrmal cAregivers of older people with early CogniTIVe declinE. In the development phase, we will identify the evidence base and prominent theory, and develop the PROACTIVE intervention in the Flemish context. In the evaluation phase, we will evaluate the PROACTIVE intervention with a pretest and posttest design in 1 year. Quantitative data will be collected with the BelRAI Screener, the BelRAI Social Supplement and the interRAI Family Carer Needs Assessment at baseline and follow-up points (at 4, 8 and 12 months). Qualitative data will be collected using counselling logs, evaluation forms and focus groups. Quantitative data and qualitative data will be analysed with SAS 9.4 software and NVivo software, respectively. Efficacy and process evaluation of the intervention will be performed. Ethics and dissemination: This study has been approved by the Ethics Committee of KU Leuven with a dossier number G-2020-1771-R2(MAR). Findings will be disseminated through community information sessions, peer-reviewed publications and national and international conference presentations.

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Developing a patient safety guide for primary care: A co‐design approach involving patients, carers and clinicians

Background: Patients and carers should be actively involved in patient safety and empowered to use person‐centred approaches where they are asked to both identify safety concerns and partner in preventing them. Objectives: The aim of this study was to co‐design a patient safety guide for primary care (PSG‐PC) to support patients and carers to address key patient safety questions and identify key points where they can make their care safer. The objectives were to i) identify when and how patients and carers can be involved in primary care patient safety, and ii) identify the relevant information to include in the PSG‐PC. Design: An experience‐based co‐design approach. Setting and Participants: We conducted three workshops with patients, carers, community pharmacists and general practitioners to develop and refine the PSG‐PC. Results: Participants identified both explicit and implicit issues of primary care patient safety especially relating to technical and relational components of involving patients and carers. The importance of communication, understanding roles and responsibilities, and developing partnerships between patients and health‐care providers were considered essential for actively involving patients in patient safety. Co‐developing the PSG‐PC provided insight to improve care to develop the PSG‐PC. Discussion: The PSG‐PC is the first guide to be developed for primary care, co‐designed with patients, carers, general practitioners and pharmacists. The PSG‐PC will support patients and carers to partner with health‐care professionals to improve patient safety addressing international and national priorities to continuously improve patient safety.

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Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study

Objectives: People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care. Methods: A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm. The study involved five Health and Social Care (HSC) Trusts and two Hospices in one region of the United Kingdom. Family caregivers (n = 10) participated in individual interviews. HSC professionals’ (n = 28) perceptions of informational needs were explored within focus groups (n = 6). Results: Family caregivers reported information needs chiefly concerning the disease, financial entitlements, and practical support which could change over the disease trajectory. Findings evidence the expertise of long-term family caregivers, prior to the end of life. Palliative care and intellectual disability teams acknowledged their role to work in partnership and facilitate access to information. Recommendations were mapped onto a co-designed logic model. Significance of results: New insights into the specific informational needs of this family caregiving population. A co-designed logic model presents these needs and how they may be addressed. Central co-ordinators have been advocated for these caregivers. This model could have international applicability for similar family carers, supporting people with other disabilities or cognitive impairment, and should be further explored.

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Determining care burden and psychiatric symptom level in caregiver of schizophrenia patient

Purpose: The present study was conducted to determine the care burden and psychiatric symptom levels of the caregivers of schizophrenic patients. Design and Methods: The caregivers of schizophrenic patients were included in this descriptive study. Findings: It was determined that there was a statistically significant difference in the care burden scores and the education, family type, and the presence of physical diseases of the caregivers (P <.05). It was determined that there was a statistically significant positive relation between age and care duration (r =.339, P =.001). Practice Implications: It is recommended that the family members are guided to plan activities that will allow the family members to relax and cover their own needs.

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Determinants of Health Promotion Behaviors among Family Caregivers of Stroke Survivors

Purpose: To record the health promotion behaviors of family caregivers of stroke survivors, as well as potential determinants that could affect these behaviors. Methods: A cross-sectional study was carried out through home visits in the Attica region using the convenience sampling method. The studied population included 109 survivors who had suffered a stroke and experienced functional problems, and their 109 primary caregivers, who were family members, lived in the same house and were fully responsible for their care. The dependent variables were the caregivers’ health promotion behaviors, while the independent variables were the survivors and caregivers’ demographic characteristics, survivors’ functional capacity, depression, social support and changes in caregivers’ lives from caring. Results: Better health promotional behaviors were associated with the following: patient having advanced age and a high level of functionality, caregivers assessing their own state of health as “good”, greater social support, a higher educational level and a higher income level. In addition, more hours of patient care were associated with a less healthy lifestyle for caregivers. Conclusions: Promoting the health of family caregivers of stroke survivors is crucial for both survivors and caregivers. For this reason, it is of great importance to detect factors that affect the health promotion behaviors of caregivers in order to carry out appropriate interventions and improve their quality of life.

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Depressive and Anxious Comorbidity and Treatment Response in Family Caregivers of People with Dementia

Background: While most intervention studies conducted with dementia family caregivers have focused on depressive symptoms as the main outcome, no study has analyzed the effects of an intervention on comorbid clinical presentations of depressive and anxious symptomatology. Objective: The aim of this study was to examine the association between clinical depressive and anxious symptomatology at baseline and treatment responses of dementia family caregivers using samples from two randomized intervention trials with the same pre-post design. Methods: Specifically, the effects on depressive and anxious comorbidity of three intervention conditions (Cognitive Behavioral Therapy (CBT), Acceptance and Commitment Therapy (ACT), and a control group (CG)) were analyzed. Participants were 130 dementia family caregivers. In addition to sociodemographic variables, depressive and anxious symptomatology were measured. Results: Caregivers with clinical depressive and anxiety comorbid symptoms at baseline recovered less well from depressive symptoms after CBT (45.45%) and ACT (47.72%) interventions than caregivers with non-comorbidity (100% recovery in both treatments). No significant association between comorbidity and treatment responses on depression was found for the control group. Regarding anxiety, among participants with comorbidity at baseline, 36.36% of caregivers in CBT and 30.9 % in the ACT group recovered from anxiety symptoms after treatment, compared to 6.45% in the control group. Similar results were obtained regarding those caregivers who recovered both from clinical depressive and anxiety symptoms and showed comorbidity at baseline. Conclusion: Caregivers that show comorbid depressive and anxiety symptoms at baseline may benefit less from interventions than caregivers who do not show comorbidity. 

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Dementia awareness, beliefs and barriers among family caregivers in Pakistan

Objectives: Dementia research and services in Pakistan are limited. The following was explored in experiences of family caregivers of people with dementia in Pakistan: (a) to determine whether culture and religion play a role in caregiving; (b) to draw insights on how family caregivers cope, what barriers they face and what help they would be willing to accept and (c) to determine how these findings could be used to raise awareness and influence public policies in improving the lives of families living with dementia. Methods: The experiences of family caregivers of people with dementia in Pakistan were explored via semi-structured interviews (10 in Lahore; 10 in Karachi). This was part of a larger qualitative study conducted about dementia in Pakistan. Caregivers interviewed were aged 35–80 (14 female). Most caregivers in the study were educated and affluent. Interviews were conducted in Urdu, translated into English and thematically analysed. Results: Five themes emerged: knowledge and awareness; stigma; importance of religion and duty to care; use of day care centres and home-help; and barriers. A lack of dementia awareness exists in Pakistan. The religious duty to care for family influenced caregiving decisions. Day care centres and home-help were accessed and viewed positively. The caregivers also wanted extracurricular activities for people with dementia, support groups for caregivers and better training for healthcare staff. Novel findings included that caregivers felt that dementia should not be stigmatised, and awareness should be raised in Pakistan via TV, radio and social media, but not inside mosques. Discussion: Additional research is necessary to determine if positive views of day care centres and home-help exist more widely. Attitudes and experiences regarding stigma may be different for caregivers of people with more advanced dementia. We recommend raising dementia awareness, allocating more funds to dementia services and an emphasis on home-based care.

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Delirium-Related Knowledge, Caregiving Performance, Stress Levels, and Mental Health of Family Caregivers of Terminal Cancer Patients with Delirium in a Hospice Care Unit

Purpose: The purpose of this study was to examine the knowledge, caregiving performance, stress levels, and mental health of family caregivers of terminal cancer patients with delirium, insofar as these characteristics are relevant for delirium. Methods: Between May 1, 2019, and June 1, 2020, 96 family caregivers of terminal cancer patients with delirium completed a structured survey, the results of which were analyzed. Results: The average correct answer rate for delirium-related knowledge was 53.2% across all subcategories, which included knowledge of causes (41.5%), symptoms (65.4%), and caregiving (51.7%). The average score for family caregivers' performance of caregiving for delirium was 2.60 ±0.5, with subcategories including caregiving for patients without delirium (2.16±0.95), caregiving for patients with delirium (2.84±1.01), and stress related to caregiving for delirium (39.88±16.55), as well as categories such as patient-related caregiving (44.32±28.98), duty-related caregiving (44.21±30.15), and interpersonal relationship-related caregiving (22.35±25.03). For mental health, the average score among family caregivers was 1.96± 0.70, with the highest score being for the category of additional items (2.28±0.84). Family caregivers of patients with hyperactive delirium as the delirium subtype had higher scores for caregiving performance than caregivers of patients with mixed delirium. Conclusion: Scores for the delirium-related knowledge and caregiving performance of family caregivers were low, while their caregiving stress levels were high due to their lack of knowledge and experience. This indicates the importance of delirium-related education for family members of patients with delirium and the necessity of developing nursing intervention programs to help manage stress and promote mental health among family caregivers.

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Decision Making When Cancer Becomes Chronic: Needs Assessment for a Web-Based Medullary Thyroid Carcinoma Patient Decision Aid

Background: In cancers with a chronic phase, patients and family caregivers face difficult decisions such as whether to start a novel therapy, whether to enroll in a clinical trial, and when to stop treatment. These decisions are complex, require an understanding of uncertainty, and necessitate the consideration of patients’ informed preferences. For some cancers, such as medullary thyroid carcinoma, these decisions may also involve significant out-of-pocket costs and effects on family members. Providers have expressed a need for web-based interventions that can be delivered between consultations to provide education and prepare patients and families to discuss these decisions. To ensure that these tools are effective, usable, and understandable, studies are needed to identify patients’, families’, and providers’ decision-making needs and optimal design strategies for a web-based patient decision aid. Objective: Following the international guidelines for the development of a web-based patient decision aid, the objectives of this study are to engage potential users to guide development; review the existing literature and available tools; assess users’ decision-making experiences, needs, and design recommendations; and identify shared decision-making approaches to address each need. Methods: This study used the decisional needs assessment approach, which included creating a stakeholder advisory panel, mapping decision pathways, conducting an environmental scan of existing materials, and administering a decisional needs assessment questionnaire. Thematic analyses identified current decision-making pathways, unmet decision-making needs, and decision support strategies for meeting each need. Results: The stakeholders reported wide heterogeneity in decision timing and pathways. Relevant existing materials included 2 systematic reviews, 9 additional papers, and multiple educational websites, but none of these met the criteria for a patient decision aid. Patients and family members (n=54) emphasized the need for plain language (46/54, 85%), shared decision making (45/54, 83%), and help with family discussions (39/54, 72%). Additional needs included information about uncertainty, lived experience, and costs. Providers (n=10) reported needing interventions that address misinformation (9/10, 90%), foster realistic expectations (9/10, 90%), and address mistrust in clinical trials (5/10, 50%). Additional needs included provider tools that support shared decision making. Both groups recommended designing a web-based patient decision aid that can be tailored to (64/64, 100%) and delivered on a hospital website (53/64, 83%), focuses on quality of life (45/64, 70%), and provides step-by-step guidance (43/64, 67%). The study team identified best practices to meet each need, which are presented in the proposed decision support design guide. Conclusions: Patients, families, and providers report multifaceted decision support needs during the chronic phase of cancer. Web-based patient decision aids that provide tailored support over time and explicitly address uncertainty, quality of life, realistic expectations, and effects on families are needed.

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A decision aid to support family carers of people living with dementia towards the end-of-life: Coproduction process, outcome and reflections

Background: Family carers of people living with dementia often need support with making decisions about care. Many find end-of-life care decisions particularly difficult. The aim of this article is to present an evidence- and theoretical-based process for developing a decision aid to support family carers of people with dementia towards the end-of-life. Methods: Following a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision-Making model. Results: The decision aid covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well-being; and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers. Conclusion: This is the first decision aid that focusses on multiple decisions towards the end-of-life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction. Patient or Public Contribution: Family carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops. 

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Dealing With the Unthinkable: Bladder and Colorectal Cancer Patients’ and Informal Caregivers’ Unmet Needs and Challenges in Life After Ostomies

Objectives: We examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience. Data Sources: A total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs. Results: Patients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies. Conclusion: Meeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment. Implications for Nursing Practice: An effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients’ and caregivers’ outcomes. 

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A cross-european study of informal carers’ needs in the context of caring for older people, and their experiences with professionals working in integrated care settings

Introduction: Informal carers are increasingly relied on for support by older people and the health and social care systems that serve them. It is therefore important that health and social care professionals are knowledgeable about and responsive to informal carers’ needs. This study explores informal carers’ own needs within the context of caregiving; and examines, from the informal carers’ perspective, the extent to which professionals assess, understand and are responsive to informal carers’ needs. Methods: We interviewed (2016–2018) 47 informal carers of older people being served by 12 integrated care initiatives across seven countries in Europe. The interviews were thematically coded inductively and analysed. Results: Informal carers reported that professionals treated them with respect and made efforts to assess and respond to their needs. However, even though professionals encouraged informal carers to look after themselves, informal carers’ needs (e.g., for respite, healthcare) were insufficiently addressed, and informal carers tended to prioritize older people’s needs over their own. Discussion and conclusion: Informal carers need better support in caring for their own health. Health professionals should have regular contact with informal carers and proactively engage them in ongoing needs assessment, setting action plans for addressing their needs, and identifying/accessing appropriate support services. This will be important if informal carers are to continue their caregiving role without adverse effects to themselves.

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COVID-19 and UK family carers: policy implications

Background: Informal (unpaid) carers are an integral part of all societies and the health and social care systems in the UK depend on them. Despite the valuable contributions and key worker status of informal carers, their lived experiences, wellbeing, and needs have been neglected during the COVID-19 pandemic. Methods: In this Health Policy, we bring together a broad range of clinicians, researchers, and people with lived experience as informal carers to share their thoughts on the impact of the COVID-19 pandemic on UK carers, many of whom have felt abandoned as services closed. Discussion: We focus on the carers of children and young people and adults and older adults with mental health diagnoses, and carers of people with intellectual disability or neurodevelopmental conditions across different care settings over the lifespan. Conclusion: We provide policy recommendations with the aim of improving outcomes for all carers. 

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Course of Changes in Emotional Preparedness for Death and Its Associations With Caregiving Outcomes for Family Caregivers of Terminally Ill Cancer Patients Over Their Last Year of Life

Background: Preparing family caregivers for a patient's death is an integral component of quality end-of-life care, but temporal changes in emotional preparedness for death and its associations with caregivers' psychological well-being or quality of life (QOL) while providing end-of-life caregiving are under-researched. Our study was conducted to fill this gap. Methods: For this prospective, longitudinal study, the course of changes in adequate emotional preparedness for death and its associations with severe depressive symptoms and QOL were examined on 309 consecutive caregivers of terminally ill cancer patients by univariate and multivariate generalized estimating equation analyses, respectively. Results: Prevalence of adequate emotional preparedness for death was 57.2%, 61.3%, 54.4%, and 46.0% at 181-365, 91-180, 31-90, and 1-30 days before the patient's death, respectively, without significant changes as the patient's death approached. Adequate emotional preparedness for death was associated with caregivers' lower likelihood of severe depressive symptoms (adjusted odds ratio [95% CI]: 0.23 [0.16, 0.32], P < 0.001) but with their better QOL (adjusted β [95% CI]: 7.65 [6.38, 8.92], P < 0.001) in the patient's last year. Conclusions: Without active, effective clinical interventions to promote caregivers' emotional preparedness for death, they cannot automatically become more prepared for the patient's death over time. Adequate emotional preparedness for the patient's death benefits caregivers by its associations with a lower likelihood of depressive symptoms and better QOL. Supportive programs for caregivers of terminally ill cancer patients should focus on not only enhancing caregiving skills but also cultivating emotional preparedness for their relative's death to promote their psychological well-being and QOL.

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Counseling Parents at the Time of Diagnosis: Moving Toward Client-Centered Practice

Purpose: The purpose of this article is to present a clientcentered model of counseling that integrates information and personal adjustment counseling. Research has indicated that audiologists are more comfortable with counseling that is information based than with personal adjustment counseling. The prevailing model of diagnosis appears to be the medical model in which, first, a case history is taken, then testing and, finally, counseling. This model lends itself to audiologist as expert and the counseling as a separate entity based on information and advice. Further research has indicated parents retain little of the information provided in the initial examination because of their heightened emotions. Method: This article presents a client-centered model of diagnosis in which information is provided within an emotionally safe context, enabling the parents to express their feelings and have the ability to control the flow of information. The ultimate purpose of a client-centered model is to empower parents by making them active participants in the diagnostic process rather than passive recipients. Conclusion: The client-centered model has wide implications for the diagnostic process as well as for the training of students.

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Cost‐effectiveness of a telehealth intervention for in‐home dementia care support: Findings from the FamTechCare clinical trial

Background: Determining the cost‐effectiveness of technological interventions is a crucial aspect in assuring these interventions can be adopted. The FamTechCare intervention is an innovative telehealth support that links family caregivers of persons living with dementia to tailored feedback from dementia care experts based on caregiver‐initiated video recordings of challenging care situations. The FamTechCare intervention has demonstrated significant reductions in caregiver depression and increases in caregiver competence when compared to standard telephone support. The purpose of this article is to report on the cost‐effectiveness of the FamTechCare telehealth intervention. Methods: Process‐based costing and a cost‐effectiveness analysis using the incremental cost‐effectiveness ratio (ICER) was completed with 68 caregiver and person living dementia with dyads. Results: The cost of the 12‐week FamTechCare telehealth intervention was found to be greater ($48.43 per dyad per week) due to the telehealth equipment, recording application, and expert panel time compared with the telephone support intervention ($6.96 per dyad per week). The ICER was $18.51 for caregiver depression and $36.31 for caregiver competence indicating that it cost no more than $36.38 per dyad per week over 12 weeks to achieve significant improvement in depression and competence in the FamTechCare caregivers compared to the telephone support caregivers. Conclusion: The FamTechCare intervention appears to be cost‐effective when compared to the telephone support intervention and remains near the willingness‐to‐pay threshold for caregivers providing in‐home dementia care support.

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Correlation between the burden of family caregivers and health status of people with diabetes mellitus

Background: Family caregivers play an important role in providing long-term care for people with diabetes mellitus because it is a chronic disease that requires critical attention. This increases the burden of family caregivers which affects the health status of people with this disease. Therefore, the aim of this study is to determine the correlation between the burden of family caregivers and the health status of people with diabetes mellitus. Design and methods: This is an analytic observational study which was carried out in the work area of public health centers in Malang City using a cross-sectional design approach. The subjects used were 327 people with diabetes mellitus and their families were selected using the cluster sampling technique. Data collection was carried out using demographic data instruments, Zarit Burden Interview (ZBI) questionnaire to measure the burden of family caregivers and the SF 12 questionnaire to measure the health status of people with diabetes mellitus. Results: The results of the Spermank-Rank statistical test showed that there was a negative relationship between the burden of family caregivers and the health status of people with diabetes mellitus (p-value 0.000 and coefficient value of -0.333). Conclusions: It was concluded that the lesser the burden on family caregivers, the better the health status of people with diabetes mellitus. Therefore, interventions are needed to reduce the burden of family caregiver and improve the health status of patients with diabetes mellitus. 

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Correlates of Formal Support Service Use among Dementia Caregivers

Background: Informal caregivers for persons with dementia frequently report needing assistance, yet formal support service use has been low. Methods: To better understand factors associated with service use, correlates of self-reported service use (e.g., support groups, family mediation, family leave, classes/trainings, and respite care) among dementia caregivers were assessed. The National Poll on Healthy Aging conducted a nationally representative web-based survey of adults aged 50–80 (N = 2,131) using Ispos' KnowledgePanel®. Results: 148 reported caregiving for an adult with memory loss [61.5% female; 25% nonwhite, 54.1% aged 50–64]. Multivariable logistic regression analyzes assessed caregiver and care recipient characteristics associated with service use within the prior year. Nearly 25% of caregivers used at least one service. Caregiver characteristics associated with greater likelihood of service use included not working [7.5 OR; 2.73, 20.62 CI]; income <$30,000/year [5.9 OR; 1.27, 27.17 CI]; and residing in Western US [7.5 OR; 2.73, 20.62 CI]. Ability of care recipient to be left alone safely for only three hours or less [5.1 OR; 1.66, 15.46 CI] was associated with greater likelihood of use. Support service use remains low. Conclusions: Findings suggest need to consider caregivers' employment status, income, and geographical location in service design and implementation.

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Coping Patterns Among Primary Informal Dementia Caregivers in Singapore and Its Impact on Caregivers-Implications of a Latent Class Analysis

Background and Objectives: Existing studies typically explore the factor structure of coping strategies among dementia caregivers. However, this approach overlooks the fact that caregivers often use different coping strategies simultaneously. This study aims to explore the coping patterns of primary informal dementia caregivers in Singapore, examine their significant correlates, and investigate whether different patterns would affect the depressive symptoms of caregivers. Research Design and Methods: Two hundred eighty-one primary informal caregivers of persons with dementia (PWD) were assessed. Coping strategies were measured by the Brief Coping Orientation to Problem Experienced inventory. A latent class analysis was performed to explore caregivers' coping patterns, followed by logistic regressions to identify the significant correlates and the relationships between coping patterns and caregiver depression. Results: The latent class analysis suggested a three-class solution that was featured by the frequency and variety of coping strategies used by caregivers-high coping (36.3%), medium coping (37.7%), and low coping (26.0%). Factors influencing the coping patterns of our sample were mainly related to caregivers' individual resources such as personal characteristics and caregiving stressors like PWD's problematic behaviors and caregiving burden. Compared to caregivers in the low coping group, those in the medium coping group had significantly higher risks of potential depression. Discussion and Implications: The current study confirmed that there are distinct coping patterns among primary informal dementia caregivers, and caregivers with the low coping pattern had fewer depressive symptoms. Future research is needed to explore if coping patterns from our sample are generalizable to dementia caregivers elsewhere.

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Construction and validation of self-care educational technology for caregivers

OBJECTIVES: to build and validate educational self-care technology for informal caregivers. METHODS: methodological study, anchored in the Delphi technique, carried out in a municipality in the state of Paraná, Brazil, between September 2018 and November 2019. It was developed in three stages: situational diagnosis; elaboration of educational technology; content and appearance validation by expert judges and informal caregivers, using the content validity index and coefficient of variation. RESULTS: after the steps of the methodological process, an educational technology called "Taking Care of Those Who Care" was produced, as an information tool that deals with the self-care of informal caregivers, receiving a content validity index above 0.86 and a variation coefficient. below 20% on all items. CONCLUSIONS: the educational technology was built and evaluated with satisfactory rates by the specialists and target audience, showing a high correlation of agreement, characterizing it as adequate and informative to informal caregivers.

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Congruence of cancer pain experience between patients and family caregivers and associated factors: a multicenter cross-sectional study in China

Purpose: The purposes of this study were to determine whether there were differences in the cancer pain experience between patients and family caregivers (FCGs) and to explore the associated factors that influence cancer pain experience congruence. Methods: A multicenter cross-sectional study was conducted. A total of 410 patient-family caregiver dyads completed face-to-face surveys, including information about basic characteristics, the Patient Pain Questionnaire (PPQ), and the Family Pain Questionnaire (FPQ). The difference in cancer pain experience between patients and family caregivers was analyzed using a paired t test. Indicators for the congruence of cancer pain experience were analyzed using the chi-square test and two independent-sample t tests for bivariate analysis and multivariate binary logistic regression analysis. Results: Of the patients, 57.1% were men, and 60.7% perceived moderate performance status. The majority of the family caregivers was female (54.9%). The mean (SD) score on the pain experience subscale was 4.82 (1.66) for 410 patients and 5.02 (1.66) for 410 family caregivers. The difference was significant (P < 0.01). Additionally, 87 (21.2%) dyads were in the congruent group, and 323 (78.8%) dyads were in the incongruent group. Patients' self-perceived moderate performance status (OR = 2.983, P < 0.01) and family caregivers' pain knowledge (OR = 1.171, P < 0.05) were the main factors influencing the congruence of cancer pain experience. Conclusion: The findings of this study indicate that family caregivers reported significantly worse cancer pain experiences than patients. Family caregivers' pain knowledge was a primary influencing factor. It is suggested that educational interventions aimed at teaching family caregivers and patients how to communicate their pain experience and improving the knowledge of family members regarding pain and its management may help in aligning their perceptions and thereby contribute to better quality of life and pain management outcomes. 

 

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The Concerns and Experience of Decision-Making Regarding Do-Not-Resuscitate Orders Among Caregivers in Hospice Palliative Care

Background: A do-not-resuscitate (DNR) order is an important end-of-life decision. In Taiwan, family caregivers are also involved in this decision-making process. This study aimed to explore the concerns and experiences regarding DNR decisions among caregivers in Taiwan. Methods: Qualitative study was conducted. Convenience sampling was used, and 26 caregivers were recruited whose patients had a DNR order and had received hospice care or hospice home care. Semi-structured interviews were used for data collection, including the previous experiences of DNR discussions with the patients and medical staff and their concerns and difficulties in decision-making. The data analysis was based on the principle of thematic analysis. Findings: Four themes were identified: (1) Patients: The caregivers respected the patients' willingness and did not want to make them feel like "giving up." (2) Caregivers' self: They did not want to intensify the patients' suffering but sometimes found it emotionally difficult to accept death. (3) Other family members: They were concerned about the other family members' opinions on DNR orders, their blame, and their views on filial impiety. (4) Medical staff: The information and suggestions from the medical staff were foundational to their decision-making. The caregivers needed the health care professionals' supports to deal with the concerns from patients and other family members as well as their emotional reactions.

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A Conceptual Model to Improve Care for Individuals with Alzheimer's Disease and Related Dementias and Their Caregivers: Qualitative Findings in an Online Caregiver Forum

Background: As the population rapidly ages, a growing number of families are engaging in care for individuals living with Alzheimer's disease and related dementias (ADRD). The perceived challenges and burdens that face informal caregivers are enormous. Objective: The objective of this study was to 1) explore from the family caregivers' perspective, the daily lives of individuals living with ADRD, and the challenges family caregivers encounter when caring for a family member with ADRD; and 2) to develop a comprehensive model with the endeavor to improve care for individuals with ADRD and their family caregivers. Methods: Posts were extracted from the ALZConnected online caregiving forum in May 2019. Guided by a triangular model focused on Caregiver, Individual with ADRD, and Context of Care, two researchers independently analyzed 654 posts with a combination of deductive and inductive thematic analysis approach. Researchers all agreed on finalized codes and themes. Results: Thematic analysis resulted in four themes: Individual with ADRD, Caregiver, Dynamic between Caregiver and Individual with ADRD, and Context of Care. The most frequently discussed topics among caregivers were informational and emotional support for caregivers, and the capabilities and functioning of individuals with ADRD. Conclusion: Online forums provide a valuable platform for caregivers to support each other informationally and emotionally, share care strategies, and navigate caregiving burdens. An expanded model was derived to support a comprehensive and dynamic approach to improve care for both caregivers and individuals with ADRD. The unique nature of the caregiver forum data is worthy of further data mining using a novel analysis approach. 

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The comprehensive factors affecting the sleep quality in family caregivers of patients with dementia in the community of South Korea

Purpose: The purpose of this study was to provide the comprehensive factors affecting the sleep quality in family caregivers of patients with dementia in South Korea, including patient and caregiver-related factors. Methods: The participant were a total of 156 family caregivers who live with patients with dementia in South Korea. Patient and caregiver-related factors were measured using tools with high reliability. Data collection was performed from May to August 2019, and data were analyzed using descriptive analysis, t-test, ANOVA, Pearson's correlation coefficients, and multiple regression with the SPSS/21.0 program. Results: The significant factors affecting family caregivers’ sleep quality were their depression (β=.52, p<.001) and their education (β=.23, p=.019). Conclusion: There is a need to monitor caregivers’ depression and sleep quality. Future studies, biomarker to monitor caregivers’ sleep quality to achieve objective evidence. There is a need to provide additional education programs to improve the understanding around caregivers' sleep quality especially for caregivers with low level of education. 

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Components of Empowerment Among Family Caregivers of Community-Dwelling People With Dementia in Japan: A Qualitative Research Study

Background: Family caregivers of people with dementia (PWDs) experience significant physical, psychological, and social burdens. Empowerment, which refers to the process of gaining power in society through behavioral change, is important to coping successfully with care-related burdens. The high burden of care faced by family caregivers in Japan often makes accepting social support difficult for caregivers of PWDs, resulting in feelings of isolation. Clarifying what components constitute empowering experiences for family caregivers of PWDs is necessary to gain a better understanding of their empowerment experiences and to develop relevant support schemes. Purpose: This study was developed to describe the components of empowerment experienced by family caregivers of community-dwelling PWDs in Japan. Methods: This qualitative descriptive study used semistructured in-depth interviews to explore components of empowerment experienced by family caregivers of adults/older adults with dementia. Purposive sampling was used to recruit 20 family caregivers (age range: 50–87 years) from four self-help groups. A qualitative content analysis method was used to analyze the data. The components derived from the interviews were reviewed by three nursing researchers not directly involved in this study who are specialists in qualitative research and geriatric nursing. Results: Four categories and 12 subcategories were derived to illuminate the components of empowerment among family caregivers of PWDs. Specifically, these categories were as follows: (a) proactive aspects of dementia care that were acquired through the caregiving experience, (b) creating a relationship that respects PWDs, (c) Building relationships based on mutual understanding of one's surroundings, and (d) understanding the social aspects of dementia care. Conclusions/Implications for Practice: The findings of this study provide additional understanding of the components of the empowerment experiences of family caregivers of PWDs in Japan and in other East Asian countries experiencing increasing dementia diagnoses and population aging. In addition, the structural components of empowerment offer a useful perspective for health professionals on assessment and intervention that is framed on the cultural characteristics of East Asia. Ultimately, the results suggest that healthcare professionals should develop intervention programs that are tailored to the needs of caregivers at different levels of empowerment.

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Comparison of Traditional Videos With Telenovelas for Hospice Family Caregivers Education

Background: While research has shown that hospice family caregivers (HFCG) seek additional information related to patient care, pain and symptom management, and self-care, it is unknown how the use of telenovela videos for education in hospice would be received by HFCG. Objective: To explore HFCG perceived benefits and challenges with the use of telenovelas as compared to traditional educational videos during online support group. Methods: A mixed methods study with a concurrent triangulated design that analyzed qualitative interviews and YouTube analytics report to identify how viewers responded (number of views and their feedback) to telenovela videos as compared to traditional educational videos. Results: Among 39 (n = 39) HFCGs, most participants were female (80%) of White/Caucasian race, with more than high school education (85%) and they were adult children of hospice cancer patient (49%). Comparing HFCG that viewed traditional videos with HFCG that viewed telenovela videos, the telenovela video was watched more (12% longer viewing duration) and caregivers reported better content recall with informative benefits, more follow up actions and reflection about their own hospice experience. Conclusion: Caregiver feedback indicated that watching the telenovela was engaging, acceptable and produced more conversations about patient care, than watching a non-telenovela format video. Further research is needed to test telenovela efficacy in enhancing HFCG outcomes.

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A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data

Background: Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer’s health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care. Methods: The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD. Results: In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient. Conclusions: Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer’s actual needs and preferences rather than on preconceptions drawn from a generalised support model.

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Communication of Pharmacogenomic test results and treatment plans in pediatric oncology: deliberative stakeholder consultations with parents

Background: Effective communication in support of clinical decision-making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) that can diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment; however, the potential implementation of the LDT may make effective communication challenging since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e. those with a catastrophic diagnosis. Objective: We solicited the perspectives of parents of children with difficult-to-treat brain cancer on communication preferences surrounding the potential implementation of the LDT in standard care using deliberative stakeholder consultations. Methods: Eight bereaved parents of children who succumbed to difficult-to-treat brain cancer, and four parents of children currently undergoing treatment for similar cancers attended separate small-group deliberative consultations – a stakeholder engagement method that enables the co-creation of recommendations following the consideration of competing arguments and diverse opinions of parents with different experiences. In the small-group consultations (Phase I), parents discussed four questions about potential communication issues that may arise with the LDT in practice. In Phase II, a total of five parents from both stakeholder groups (4 bereaved and 1 in current treatment) attended a consultation, known as the 'mixed' consultation, with the purpose of co-developing concrete recommendations for implementation of the LDT. Results: Explaining the risks, benefits, and accuracy of the LDT were considered essential to parents. Once an LDT-based diagnosis/prognosis can be made, parents valued honesty, empathy, and clarity in communication. Parents also requested that all results and treatment options be presented to them in measured doses, and in an unbiased manner over the course of several meetings. This communication strategy allowed sufficient time to understand and accept the diagnosis/prognosis, particularly if it was catastrophic. Continuous access to the appropriate psychological and social support or counselling at and post-diagnosis was also strongly recommended. Conclusions: Deliberants co-created family-centered recommendations surrounding communication issues of the LDT, providing guidance to pediatric oncologists that could implement the test in practice.

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Comfort Needs of Cancer Family Caregivers in Outpatient Palliative Care

Background: Rapid expansion of outpatient palliative care has been fueled by the growing number of people living with cancer and other chronic illnesses whose symptoms are largely managed in the community rather than inpatient settings. Nurses and other palliative care professionals support seriously ill patients and their families, yet little research has specifically examined the needs of cancer family caregivers receiving services from outpatient palliative care teams. Methods: To address this gap in the knowledge base, researchers conducted a reflective thematic analysis of qualitative interviews conducted with 39 family caregivers, using Comfort Theory as a theoretical guide. Findings: Seven themes describing caregivers' comfort needs were identified, including the need to understand , need for self-efficacy , need to derive meaning , need for informal support , need for formal support , need for resources , and need for self-care. Conclusions: Findings have clear implications for palliative nursing, as they directly address cancer family caregivers' needs in 5 of the 8 domains of care delineated by the National Consensus Project for Quality Palliative Care's Clinical Practice Guidelines. Comprehensive, holistic nursing assessment is suggested to identify family caregivers' needs and plan for delivery of evidence-based interventions shown to decrease burden and improve quality of life.

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Combining paid work and family care for a patient at the end of life at home: insights from a qualitative study among caregivers in the Netherlands

Background: Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs. Method: Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis. Results: Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains — caregiver characteristics, the care situation, the work situation and the context — influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt ‘sandwiched’ between work and care and reported physical or mental health complaints. Conclusions: Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.

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Combining a variable‐centered and a person-centered analytical approach to caregiving burden – a holistic approach

Background: Informal caregivers of persons with dementia often experience elevated levels of caregiving burden. However, existing studies tend to use a variable-centered approach to explore it. This study aims to understand the caregiving burden of informal caregivers of persons with dementia in Singapore through a combination of variable-centered and person-centered analytical approaches, and explore the correlates of identified factors and latent classes of caregiving burden. Methods: Zarit Burden Interview was used to gauge the caregiving burden of 282 primary informal caregivers of persons with dementia recruited through convenience sampling in Singapore. Factor analysis and latent class analysis were conducted to identify the latent factors and the latent classes of Zarit Burden Interview, followed by multiple linear regression and multinomial logistic regression to explore their significant correlates. Results: The analyses suggested a 17-item 3-factor structure for Zarit burden interview and three mutually exclusive caregiving burden classes. Regression analyses found that caregiving related variables especially care recipients’ memory and behaviour problems were correlated with both the factors and latent classes of caregiving burden. Conclusions: The combination of these two approaches suggests that caregivers experiencing higher burden on one domain are likely to experience higher burden on the other two domains. This further supports the point that more attention should be given to caregivers who experience an overall high burden. Future research could explore the generalizability of our findings among caregivers elsewhere and explore the type of support needed by caregivers, especially those experiencing high burden.

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Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care

Background: This article explores the lived experience of informal caregivers in cancer care, focusing on the perceived burden and needs of individuals seeking support from an informal group for next of kin. Methods: A total of 28 individuals who were closely related to a patient with cancer participated in focus group interviews. Findings: Three themes were identified: setting aside one's own needs, assuming the role of project manager, and losing one's sense of identity. Together they form the framing theme: being co-afflicted. Conclusions: The characteristics of informal caregivers are shown to be similar to those of people with codependency, motivating development of targeted interventions from this perspective.

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Coaching While Waiting for Autism Spectrum Disorder Assessment: Protocol of a Pilot Feasibility Study for a Randomized Controlled Trial on Occupational Performance Coaching and Service Navigation Support

Background: In Australia, the average time between a first concern of autism spectrum disorder (ASD) and diagnosis is over 2 years. After referral for assessment, families often wait 6-12 months before their appointment. This can be a time of uncertainty and stress for families. For some families, other forms of assistance are not accessible and thus timely intervention opportunities are missed. There is little evidence about how to provide the best support for children or caregivers while on assessment waiting lists. Objective: The aim of this study is to determine whether use of a coaching intervention called Occupational Performance Coaching (OPC) combined with service navigation support is feasible for families waiting for ASD assessment, as a crucial first step in planning a randomized controlled trial. Methods: A pilot and feasibility study will be conducted using recommended constructs and associated measures, which will be reported using CONSORT (Consolidated Standards or Reporting Trials) guidance. Participants will be child and caregiver dyads or triads, recruited within 4 months of their child (aged 1-7 years) being referred to one of two services for an ASD assessment in Victoria, Australia. A blinded randomization procedure will be used to allocate participants to one of three trial arms: (1) coaching and support intervention delivered face to face, (2) coaching and support intervention via videoconference, and (3) usual care. Descriptive statistics will be used to describe the sample characteristics of parents and children, inclusive of service access at baseline and follow up. Recruitment rates will be reported, and retention rates will be evaluated against a predicted rate of 70%-80% in each intervention arm. Goal attainment, using the Canadian Occupational Performance Measure, will indicate preliminary evidence for efficacy within the intervention arms, with an increase of 2 or more points on a 10-point performance and satisfaction scale considered clinically significant. Results: The study was approved by The Royal Children’s Hospital Research Ethics and Governance Department in September 2018. As of October 2020, 16 families have been recruited to the study. Data analysis is ongoing and results are expected to be published in 2021. Conclusions: Study findings will support planning for a future randomized controlled trial to assess the efficacy of OPC and service navigation support for caregivers of children awaiting ASD assessment. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12620000164998; International Registered Report Identifier (IRRID): DERR1-10.2196/20011

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A cluster randomized controlled trial comparing Virtual Learning Collaborative and Technical Assistance strategies to implement an early palliative care program for patients with advanced cancer and their caregivers: a study protocol

Background: Virtual Learning Collaboratives (VLC), learning communities focused on a common purpose, are used frequently in healthcare settings to implement best practices. Yet, there is limited research testing the effectiveness of this approach compared to other implementation strategies. This study evaluates the effectiveness of a VLC compared to Technical Assistance (TA) among community oncology practices implementing ENABLE (Educate, Nurture, Advise, Before Life Ends), an evidence-based, early palliative care telehealth, psycho-educational intervention for patients with newly diagnosed advanced cancer and their caregivers. Methods: Using Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) and Proctor’s Implementation Outcomes Frameworks, this two-arm hybrid type-III cluster-randomized controlled trial (RCT) will compare two implementation strategies, VLC versus TA, among the 48 National Cancer Institute Community Oncology Research Program (NCORP) practice clusters that have not historically provided palliative care to all patients with advanced cancer. Three cohorts of practice clusters will be randomized to the study arms. Each practice cluster will recruit 15–27 patients and a family caregiver to participate in ENABLE. The primary study outcome is ENABLE uptake (patient level), i.e., the proportion of eligible patients who complete the ENABLE program (receive a palliative care assessment and complete the six ENABLE sessions over 12 weeks). The secondary outcome is overall program implementation (practice cluster level), as measured by the General Organizational Index at baseline, 6, and 12 months. Exploratory aims assess patient and caregiver mood and quality of life outcomes at baseline, 12, and 24 weeks. Practice cluster randomization will seek to keep the proportion of rural practices, practice sizes, and minority patients seen within each practice balanced across the two study arms. Discussion: This study will advance the field of implementation science by evaluating VLC effectiveness, a commonly used but understudied, implementation strategy. The study will advance the field of palliative care by building the capacity and infrastructure to implement an early palliative care program in community oncology practices. Trial registration Clinicaltrials.gov. NCT04062552; Pre-results. Registered: August 20, 2019. https://clinicaltrials.gov/ct2/show/NCT04062552?term=NCT04062552&draw=2&rank=1

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A Clinical Bridge between Family Caregivers and Older Adults: The Contribution of Patients’ Frailty and Optimism on Caregiver Burden

Background: The association between caregiver burden and the physical frailty of older adults has been the object of previous studies. The contribution of patients’ dispositional optimism on caregiver burden is a poorly investigated topic. The present study aimed at investigating whether older adults’ multidimensional frailty and optimism might contribute to the burden of their family caregivers. Methods: The Caregiver Burden Inventory was used to measure the care-related burden of caregivers. The multidimensional frailty status of each patient was evaluated by calculating a frailty index, and the revised Life Orientation Test was used to evaluate patients’ dispositional optimism. The study involved eighty family caregivers (mean age 64.28 ± 8.6) and eighty older patients (mean age 80.45 ± 7.13). Results: Our results showed that higher frailty status and lower levels of optimism among patients were significantly associated with higher levels of overall burden and higher burden related to the restriction of personal time among caregivers. Patients’ frailty was additionally associated with caregivers’ greater feelings of failure, physical stress, role conflicts, and embarrassment. Conclusion: Understanding the close connection between patient-related factors and the burden of caregivers appears to be an actual challenge with significant clinical, social, and public health implications.

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Clinging to My Child: Mothers' Experiences Taking Care of a Child Hospitalized with Leukemia

Aims: The purpose of this study was to investigate, within the sociocultural context of Korea, mothers' experiences caring for their child being treated in a hospital for leukemia. Method: Study participants included 11 mothers who visited a hospital for their child's follow-up care after treatment for leukemia. The researchers investigated the mothers' experiences in caring for their children using a qualitative study design. Through interviews, the researchers identified five categories of experiences among participants, including, "Death anxiety," "Feeling guilty," "Fulfilling responsibilities as a mom," "Feeling overwhelmed by life," and "Feeling grateful." Findings: In the course of treatment, mothers tended to feel pressured to be a good mother, and sometimes felt overwhelmed by life. Conclusions: Healthcare providers need to grasp the difficulties faced by mothers taking care of their children hospitalized for treatment of leukemia, and must develop programs to reduce the burden on mothers and increase their families' functioning.

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Clarifying the information and support needs of family caregivers of nursing home residents with advancing dementia

Background: Research has identified inadequacies in the quality and quantity of dementia-related information, particularly end-of-life information provided to those living with dementia and their family caregivers. The purpose of this study was to identify what types of information family caregivers of persons living with dementia in nursing homes would deem useful in preparing them for their relative's end-of-life and assist them to make decisions about care along the dementia trajectory. Methods: The qualitative methodology of interpretive description was used to guide the study in which semi-structured interviews were conducted with nursing home staff in clinical roles (e.g., nurses, health care aides, social workers, speech language pathologists; N = 26), palliative care clinicians (N = 7), and bereaved family caregivers of persons with dementia (N = 17). Data were analyzed using thematic analysis. Findings: Eight substantive categories essential to meeting family members' needs for information and preparing them for the future were identified including: (i) dementia in general, (ii) dementia toward the end-of-life, (iii) care of persons dying with dementia, (iv) the role of family caregiver as decision maker, (v) sustaining connection, (vi) emotional impact of dementia on caregivers, (vii) relationships with staff, and (viii) general questions about life in a NH. Conclusion: Our findings suggest that family caregivers of nursing home residents with dementia have unique information and support needs, some disease specific, others more related to life in a nursing home in general. Health care providers need to support and encourage dementia literacy for family caregivers. A key strategy is to proactively broach these topic areas, as too often family caregivers may not recognize or value their need for information.

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The Challenges Of Enrollment And Retention: A Systematic Review of Psychosocial Behavioral Interventions for Patients With Cancer and Their Family Caregivers

Context: Psychosocial behavioral interventions (PBIs) that target patients with cancer and their caregivers face challenges in participant enrollment and retention. Objectives: 1) Describe characteristics of the patient-caregiver PBI studies; 2) examine participant enrollment and retention rates; 3) identify factors influencing participant enrollment and retention rates; and 4) explore the strategies to promote enrollment and retention rates. Methods: We identified randomized controlled trials that tested PBIs among adult patients with cancer and caregivers in five electronic databases. We conducted narrative and quantitative analyses to synthesize our findings. Results: Among 55 qualified studies reviewed, most tested the efficacy of PBIs (n = 42) and used two study arms (n = 48). In-person meeting was the most common PBI delivery mode. The primary outcomes included quality of life, physical health, and symptoms. The average of enrollment rates of patient-caregiver dyads was 33% across studies (range 8%–100%; median = 23%). The average retention rate at the end of follow-ups was 69% (range 16%–100%; median = 70%). The number of study arms, recruitment method, type of patient-caregiver relationship, and intervention duration influenced enrollment rates. Study design (efficacy vs. pilot), follow-up duration, mode of delivery, type of relationship, and intervention duration influenced retention rates. Sixteen studies reported retention strategies, including providing money/gift cards upon study completion and/or after follow-up survey, and excluding patients with advanced cancer. Conclusion: Researchers need to incorporate effective strategies to optimize enrollment and retention in patient-caregiver PBI trials. Researchers need to report detailed study processes and PBI information to improve research transparency and increase consistency.

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Challenges implementing a carer support intervention within a national stroke organisation: findings from the process evaluation of the OSCARSS trial

Objectives: To examine the implementation of an intervention to support informal caregivers and to help understand findings from the Organising Support for Carers of Stroke Survivors (OSCARSS) cluster randomised controlled trial (cRCT). Design: Longitudinal process evaluation using mixed methods. Normalisation process theory informed data collection and provided a sensitising framework for analysis. Setting: Specialist stroke support services delivered primarily in the homes of informal carers of stroke survivors.ParticipantsOSCARSS cRCT participants including carers, staff, managers and senior leaders. Intervention: The Carer Support Needs Assessment Tool for Stroke (CSNAT-Stroke) intervention is a staff-facilitated, carer-led approach to help identify, prioritise and address support needs. Results: We conducted qualitative interviews with: OSCARSS cRCT carer participants (11 intervention, 10 control), staff (12 intervention, 8 control) and managers and senior leaders (11); and obtained 140 responses to an online staff survey over three separate time points. Both individual (carer/staff) and organisational factors impacted implementation of the CSNAT-Stroke intervention and how it was received by carers. We identified four themes: staff understanding, carer participation, implementation, and learning and support. Staff valued the idea of a structured approach to supporting carers, but key elements of the intervention were not routinely delivered. Carers did not necessarily identify as ‘carers’, which made it difficult for staff to engage them in the intervention. Despite organisational enthusiasm for OSCARSS, staff in the intervention arm perceived support and training for implementation of CSNAT-Stroke as delivered primarily by the research team, with few opportunities for shared learning across the organisation. Conclusions: We identified challenges across carer, staff and organisation levels that help explain the OSCARSS cRCT outcome. Ensuring training is translated into practice and ongoing organisational support would be required for full implementation of this type of intervention, with emphasis on the carer-led aspects, including supporting carer self-identification.Trial registration number: ISRCTN58414120.

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Challenges Experienced by Family Caregivers of the Adult Intensive Care Unit Patients in Korea: An Integrative Review

Background: Consistent with global trends, population aging in South Korea is necessitating increasing admissions to intensive care units (ICU). Design: This integrative review describes the challenges experienced by family caregivers of ICU patients in South Korea and evaluates relevant intervention studies. Using Whittemore and Knafl's methods, we identify and synthesize findings from 20 (14 descriptive and 6 experimental design) articles and evaluate study quality. Findings: South Korean ICU family caregivers reported challenges such as feelings of powerlessness and vulnerability, difficulty in maintaining their own health and well-being, and mixed feelings regarding patients' transition to the general ward. Intervention studies, which were based on quasi-experimental design, examined modified visiting hours, information provision strategies, nurse-led transitional care programs, and educational support. Conclusions: Findings highlight the current state of the science in this topic area in South Korea. Future studies should use more robust methods, such as longitudinal cohort studies and randomized controlled trials.

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Challenges and complexities of meeting family needs in the intensive care unit

Whether a planned or unexpected admission, having a relative in the intensive care unit (ICU) can be a time of turmoil and extreme stress for family members as well as patients. Research has identified the increased risk relatives face of developing symptoms of post-traumatic stress disorder (PTSD), which can be felt long after their loved one has been discharged from the ICU. Family dysfunction as well as physical, emotional, spiritual, and financial distress have also been reported as adverse outcomes attributable to a family member's admission to the ICU. Before strategies can be implemented to address or mitigate the risk of adverse outcomes developing, it is imperative to further understand the family members’ experience and needs. Using meta-aggregative methods, a qualitative synthesis published in this issue of JBI Evidence Synthesis reports on the multifaceted needs of family members at this time, and provides recommendations for how qualitative findings can be translated to practice environments.

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Challenges and approaches to involving family caregivers in primary care

Objective: Older adults are commonly accompanied to routine medical visits. This study identifies challenges and explores approaches to managing patient-family interactions in primary care. Methods: Semi-structured interviews were conducted with primary care clinicians and staff (N = 30) as well as older adult patients and family caregivers (N = 40). Interviews were analyzed using content analysis. Results: Three major challenges to patient-family interactions were identified: navigating patient autonomy and family motivation to participate; adjudicating patient-family disagreements; and minimizing obtrusive behaviors by caregivers. Three approaches to managing patient-family interactions were identified. Collaborating involved non-judgmental listening, consensus-building, and validation of different perspectives. Dividing involved separating the patient and family member to elicit confidential information from one member of the dyad. Focusing involved re-directing the conversation to either the patient or family member while minimizing input from the other. Approaches varied by patients’ cognitive status and overall health condition. In general, patients and caregivers expressed the most positive attitudes toward collaborating and patient-directed focusing approaches. Conclusion: Primary care clinicians use varied approaches to managing their interactions with patient-family dyads. Patients and caregivers generally prefer those approaches that involve collaborative rather than individual discussions. Practice implications: Findings suggest the potential for the development of communication-focused interventions to promote positive clinician-patient-family interactions.

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Caring for those who care for dependent older adults: for a necessary and urgent policy

The situation of caregivers and family caregivers of dependent older adults is presented and discussed, highlighting their dedication, problems, and possible recommendations to value them. The task of caring is known to be eminently feminine, invisible, unpaid, but affects society as a whole. Policies of some European countries, Canada, and the United States in favor of male and female caregivers are described. However, most existing support models have gaps. The laws and regulations enacted have been poorly comprehensive, inorganic, and the family remains responsible for long-lived relatives who have lost their autonomy. In many countries, besides other measures, the tendency is to integrate the family care as the first PHC level, universalizing support to caregivers. One must not be forgotten that the tendency to keep dependent older adults at home is acquiescence to their desire, but it also hides the delegation of responsibility from the State to families through dehospitalization and deinstitutionalization policies. In Brazil, the issue has not yet entered the public policy radar, although it is urgent because of the accelerated increase of the elderly population, particularly those aged 80 and over. 

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“Caring for the Elderly is Very Difficult”: Challenges and Coping Strategies of Caregivers in Urban Poor Accra, Ghana

Background: This study is part of a broader phenomenological study on the experiences of family caregivers and their care recipients. There is a general paucity of research on the experiences of primary and secondary caregivers, and the negative impact of elderly care on caregivers in the urban poor settings in Ghana. This study explored primary and secondary caregivers’ challenges and coping strategies in the urban poor context in Accra, Ghana. Methods: This study was conducted in Ga Mashie. Thirty-one caregivers were interviewed. A phenomenological analysis was conducted using NVivo 10. Findings: Primary and secondary caregivers experienced economic, physical, social, and psychological burdens. Also, caregivers used spirituality and perseverance to cope with their challenges. Conclusions: The findings demonstrate that caregivers’ challenges varied by type of caregiver. Researchers and policymakers should consider the type of caregiver when designing interventions to mitigate the negative impacts of family caregiving on caregivers.

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Caring for Patients with Psychosis: Mental Health Professionals’ Views on Informal Caregivers’ Needs

Aims: The aim of this study was to explore the views of mental health professionals regarding the needs of the informal caregivers of patients with chronic psychotic syndrome. Design: A qualitative research design was used. The sample consisted of 12 mental health professionals selected by a purposive sampling strategy. Data were collected through semistructured, face to face interviews. Framework analysis was used to analyze qualitative data and establish main themes and subthemes. Findings: Three main themes emerged namely, (i) impact of caring on caregivers’ lives, (ii) caregivers’ needs, and (iii) recommendations for better care. Informal caregivers’ needs were conceptualized into subthemes within the main themes. Caregivers’ increased responsibilities of caring for their relatives, the impact on their mental and physical health status and the restrictions in their social and professional life were revealed. Conclusions: Targeted health interventions and social policy planning are recommended for supporting informal caregivers and improving patient care.

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Caring for patients with end‐stage renal disease during COVID‐19 lockdown: What (additional) challenges to family caregivers?

Introduction: Caring for a patient with end‐stage renal disease undergoing in‐centre haemodialysis can be a stressful experience, likely to involve significant burden. Within the context of the new coronavirus pandemic, these patients are highly vulnerable to infection by COVID‐19, which might increase the care demands and burden of family caregivers. Aim: This study aimed to explore the subjective experiences of family caregivers of non‐COVID‐19 patients with end‐stage renal disease undergoing in‐centre haemodialysis during the COVID‐19 lockdown. Study design: A qualitative study was performed with a purposive sample. Methods: Semi‐structured telephone interviews were conducted with 19 family caregivers (50.7 ± 14 years old) of patients undergoing in‐centre haemodialysis in April 2020. Findings Four major themes were identified: (1) emotional distress; (2) changes in caregiving responsibilities; (3) educational and supportive needs; and (4) coping strategies to deal with the outbreak and with the lockdown. Discussion: The findings suggest that family caregivers of patients undergoing in‐centre haemodialysis have to manage several additional care responsibilities due to COVID‐19 lockdown. The dialysis team should consider the development of educational and supportive interventions to meet family caregivers’ needs, mitigate emotional distress, fears and concerns, and prevent caregiver burden during the COVID‐19 pandemic.

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Caring for patients at home after acute exacerbation of chronic obstructive pulmonary disease: A phenomenological study of family caregivers' experiences

Aims and objectives: To understand the experiences and support needs of informal caregivers of patients with chronic obstructive pulmonary diseases chronic obstructive pulmonary disease who return home following an acute exacerbation. Background: The presence of an informal caregiver is important to provide practical and emotional support after an episode of acute exacerbation of chronic obstructive pulmonary disease. However, caregiving in such circumstances can be challenging and stressful. Design: Phenomenology. Methods: This is a phenomenological study based on semi‐structured interviews with sixteen primary caregivers of chronic obstructive pulmonary disease patients. Interview data were analysed using Colaizzi's descriptive analysis framework, to identify significant themes and sub‐themes. Data were collected between April‐December 2017 in a Teaching Hospital in Italy. The study was designed and reported following the COREQ guidelines and checklist. Results: Analysis elicited five themes embracing various aspects of the caregivers' lived experiences: (a) a home disrupted, (b) living with constant vigilance and anxiety, (c) feeling the need to escape (d) self‐justifications for caregiving role/duty, and (e) feeling abandoned by professionals. Conclusions: Our results show that carers experience a range of difficulties when caring for their relative at home with chronic obstructive pulmonary disease. Some of these are linked to the physical disruption of their home but many are linked to feelings of inability to cope and the psycho‐social impact of the caring role. The study also shows how participants felt unsupported by professionals. Focused support for carers is required to enable them to meet these challenges. Relevance to clinical practice: Healthcare professionals should be trained to provide technical and psychological support to caregivers especially during the phases of disease that may involve episodes of exacerbation. Home care and continuity of care can work if there is excellent communication and collaboration between healthcare professionals and caregivers. Developing appropriate support for family caregivers is essential to address the problems they can face.

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Caring for a child with Epidermolysis Bullosa: a scoping review on the family impacts and support needs

Aims: Epidermolysis Bullosa (EB) is a rare genetic disorder characterised by recurrent skin blistering. Wound care and nursing are critical to everyday lives of EB patients. The aim of this review was to identify the support needs of parents of a child with EB and to assess the impact EB has on the family unit, irrespective of subtype of condition severity. Methods: We conducted a scoping review comprising 11 studies (2005-2021) to examine the research literature related to the support needs of parents with a child with EB, and the impact on family unit wellbeing. Results: Most common needs identified were emotional needs, followed by practical needs, social needs and physical needs. Many parents also reported a lack of informational and psychological support. Common findings included emotional stress, lack of respite and physical strain on caring responsibility, financial stress, guilt and impact on relationships and family unit. Conclusions: Few studies exist that explore the support needs of parents of a child with EB. More attention should be paid to the support needs of parents to provide adequate care to those diagnosed with EB as well as their families.

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Carers of older Australians: unmet support needs and carer well-being

Background: Primary carers play an important role in supporting the Australian Government's policy of 'ageing in place' or encouraging people to receive care in their own homes or communities rather than in institutions. Supporting carers in their role is therefore an important aspect of the policy's success. Findings: Despite numerous programs in place, this study finds that among carers of older Australians, a relatively high proportion (39%) cite unmet needs in their carer role, including a need for financial support, physical assistance, emotional support, improvement in carer health and more respite care. Concerningly, unmet support needs were shown to be strongly associated with markers of poor carer well-being, including an almost 2-fold increase in odds of poor carer satisfaction (odds ratio (OR) 1.77, 95% confidence interval (CI) 1.24-2.51), a 4- to 5-fold increase in the odds of changes to physical and emotional well-being (OR 5.29, 95% CI 3.83-7.31), deterioration in financial situation (OR 4.60, 95% CI 3.26-6.48) and strained carer-recipient relationship (OR 3.79, 95% CI 2.39-6.01).

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Carers' involvement in telecare provision by local councils for older people in England: perspectives of council telecare managers and stakeholders

Background: This paper explores telecare manager and other 'stakeholder' perspectives on the nature, extent and impact of family and other unpaid/informal carers' involvement in the provision of telecare equipment and services for older people. Methods: Data used in the paper are derived from a larger study on telecare provision by local councils in England. The paper aims to add to the growing evidence about carers' engagement with electronic assistive technology and telecare, and considers this in the context of typologies of professionals' engagement with carers. How carers are involved in telecare provision is examined primarily from the perspectives of senior managers responsible for telecare services who responded to an online survey and/or were interviewed in 2016 as part of a wider study. The perspectives of three unpaid carers were captured in a separate strand of the main study, which comprised more detailed case study interviews within four selected councils. Thematic and comparative analysis of both qualitative and quantitative survey data revealed the varied involvements and responsibilities that carers assumed during the telecare provision process, the barriers that they needed to overcome and their integration in local council strategies. Results: Findings are discussed in the context of Twigg and Atkin's typology of carer support. They suggest that carers are mainly perceived as 'resources' and involvement is largely taken for granted. There are instances in which carers can be seen as 'co-workers': this is mainly around responding to alerts generated by the telecare user or by monitored devices, but only in those councils that fund response services. Though some participants felt that telecare devices could replace or 'supersede' hands-on care that involved routine monitoring of health and wellbeing, it was also acknowledged that its use might also place new responsibilities on carers. Furthermore, the study found that meeting carers' own rights as 'co-clients' was little acknowledged.

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Carers' experiences of timely access to and use of dementia care services in eight European countries

Background: Timely access to care services is crucial to support people with dementia and their family carers to live well. Methods: Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Results: Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. Conclusions: To achieve timely support, simplified pathways to use of formal care services are needed.

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“Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system

Background: Stepping into the role of an unpaid caregiver to offer help is often considered a natural expectation of family members or friends. In Canada, such contributions are substantial in terms of healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. Methods: In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers – as a resource, as a co-worker, and as a co-client. Results: The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of ‘care-coordinator’, which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. Conclusions: We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team. We provide some examples of system-level policies and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations.

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Caregiving for ageing parents: A literature review on the experience of adult children

Background: More and more adults in their fifties and sixties are confronted with the need to support their ageing parents. Although many aspects of filial caregiving have been researched, a well-documented and comprehensive overview of the caregiving experience is lacking. Aim: This study aims for a better understanding of the caregiving experience of adult children by generating an overview of main themes in international research. Method: A literature review of qualitative studies, focusing on the experiences of adult children caring for their ageing parents, was performed. The electronic EBSCO databases Academic Search Premier, CINAHL and PsycINFO, and Google Scholar were searched to identify relevant qualitative studies published between 2000 and 2017. The 'SPIDER' eligibility criteria directed the approach. The quality of studies included was screened with the assessment sheet designed by Hawker and colleagues. The experiences reported were analysed and themes were synthesized. Ethical consideration: Ethical requirements were respected in every phase of the research process. Findings: Nineteen qualitative studies met the inclusion criteria. The quality of the relationship with the parent appears to be an important determinant of the children's caregiving experience. Within this context, three themes were found: caregiving as an emotional rollercoaster, a normatively demanding experience and an opportunity for personal development. Discussion: Children caring for their ageing parents have to deal with a wide range of contradicting and conflicting norms and values. Implications for healthcare professionals and future research have been discussed. Conclusion: Caring for ageing parents is a continuous quest for giving the best possible care and living up to one's personal values, within the context of the parent's declining health. Professionals who support filial caregivers should address not only practical responsibilities but also the normative questions and moral considerations caregivers are dealing with.

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Caregivers’ perceptions of burden and health- promoting behaviours among informal caregivers of cancer and stroke patients attending tertiary care facilities in South- South Nigeria

Background: Family caregivers’ role in cancer and stroke care is overly burdensome. Studies have considered burden and predictors of burden but the influence of caregiving burden on health - promoting behaviours among cancer and stroke family caregivers in Nigeria is scarce. The purpose of this study was to determine the influence of caregivers’ perceptions of burden and health-promoting behaviours on informal caregivers of cancer/ stroke patients attending tertiary care facilities in South- South Nigeria.  Methods: A descriptive cross-sectional survey was employed among 410 purposively selected cancer/ stroke patients’ family caregivers in tertiary care facilities, South- South Nigeria. A standardized Zarit burden interview scale and structured questionnaire were used to measure burden and determine health-promoting behaviours respectively. Descriptive (means, standard deviation and percentages) and inferential (ANOVA) statistics with a Fisher’s protected t- test at 0.05 level of significance were used for data analysis. Results: The respondents experienced severe (F= 14.02; P= 0.810) burden in caregiving to cancer/ stroke patients. The influence of health- promoting behaviours (primary, secondary and tertiary preventions) among caregivers of cancer/ stroke is significantly high in the tertiary care facilities, South-South, Nigeria. Conclusions: aregivers of cancer and stroke patients experienced severe levels of burden and health-promoting-behaviours in terms of prevention at the primary, secondary and tertiary activities were significantly high among respondents. This calls for knowledge mobilization and dissemination in Nigeria and beyond. 

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Caregivers of People With Disabilities: A Program to Enhance Wellness Self-Care

Background: Caregivers are a source of support for family members with disabilities. However, caregivers are at risk for caregiver burden, which can erode self-care skills and lead to poor physical and mental health outcomes. Caregiver Wellness Self-Care, developed to address that risk, is a 5-week group program in which participants learn about strategies that cultivate their inner resources, while connecting with others for support. Wellness, self-care, mindfulness, and yoga-based information and practices are taught in the sessions and included in participant handouts. Self-reflection and planning activities with facilitated discussions further support awareness and personal transformation. Methods: Designed by and for people providing care to an adult family member with a mental health disorder and a developmental/intellectual disability, the program was piloted three times. Findings: The current article describes the development of the program through caregiver involvement, participant and facilitator feedback, and implications for future efforts to build caregiver wellness self-care skills. Implications for nurses are highlighted. 

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Caregivers of Older Persons in Jamaica: Characteristics, Burden, and Associated Factors

Objective: The objective of this study was to determine and characterize caregiver burden among caregivers of community-dwelling older persons in Jamaica. Method: A nationally representative cross-sectional study was done among persons providing noninstitutional care for a single person (≥60 years). The Zarit Burden Interview (ZBI) and a structured questionnaire were administered to 180 caregivers from four geographic health regions. Results: The ZBI scores ranged from 0 to 56 (median = 15). Independently associated factors were relationship to care recipient and age. Children/grandchildren had higher caregiver burden scores than formally employed caregivers (odds ratio = 2.9: 95% confidence interval: [1.02, 8.34]). Compared with caregivers 35 to 44 years, those aged 45 to 65 were almost 5 times more likely to report higher caregiver burden scores. Conclusion: Caregiver burden as identified by the ZBI was low. Age (45–65 years) and being the child/grandchild of the care recipient were independently associated with greater caregiver burden. Interventions to address caregiver burden must embrace strategies that recognize that these factors.

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Caregivers' Experience at an Integrated Memory Care Clinic

Background: The Integrated Memory Care Clinic is a patient-centered medical home led by advanced practice RNs (APRNs) who provide dementia care and primary care simultaneously and continuously. Methods: We explored the experiences of 12 informal caregivers of persons living with dementia during their first year at the Clinic. Data were analyzed via directed content analysis. Results: Caregivers described the Clinic as “the only place you should go to for dementia [care].” Caregivers felt a sense of belonging to the Clinic, valued APRNs' competence and staff's dedication, and round-the-clock telephone access to APRNs. Caregivers also acknowledged that “we're all out here swimming on our own.” They expressed their sense of being overwhelmed and needing more services and medical and non-medical resources, and more prognostic information on dementia. Conclusions: Although the Clinic is beneficial for caregivers, caregiving demands exceed the supply of services and resources at the Clinic. 

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Caregiver's difficulty paying child's healthcare bills and bullying victimization of adolescents with physical disabilities

Objective: Guided by the ecological systems perspective, the objective of the study was to examine whether caregivers' difficulty paying their child's health‐care bills is associated with bullying victimization directly and indirectly through the mediating mechanisms of caregivers' frustration, adolescents' internalizing problems, and social difficulty focusing on adolescents with physical disabilities. Design: The 2019 National Survey of Children's Health dataset, which collected data on adolescents' and caregivers' demographic characteristics and health and well‐being, was used. The study sample consisted of 368 caregivers of adolescents, 12–17 years of age with physical disabilities. Results: No direct association between caregivers' difficulty paying their child's health‐care bills and bullying victimization was found. However, caregivers' frustration and adolescents' internalizing problems were shown to have an indirect association with bullying victimization, which was mediated by difficulty making friends. In addition, adolescents' difficulty making friends was positively associated with bullying victimization. Conclusions: Practitioners working with adolescents with physical disabilities are encouraged to foster collaborative processes across various ecological systems of the adolescent and family to address caregivers' frustration and promote positive social and emotional development of the adolescent with physical disabilities, which can decrease their risk of bullying victimization.

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Caregiver support and place of death among older adults

Background/objectives: As home becomes the most common place of death in the United States, information about caregiver support and place of death is critical to improve patient and caregiver experiences at end of life. We seek to examine (1) the association between family care availability and place of death; and (2) caregiving intensity associated with place of death. Design: 2017 National Health and Aging Trends Study and National Study of Caregiving; nationally representative cross‐sectional study of deceased older adults and last‐month‐of‐life (LML) caregivers. Setting: United States; all places of deaths. Participants: Three‐hundred and seventy‐five decedents and 267 LML caregivers. Measurements: Place of death (home, hospital, and nursing or hospice facility), family care availability (spouse/partner, household size, number of daughters and sons), caregiving intensity (hours of help provided at LML and a binary indicator for high care‐related emotional difficulty). Results: 38.9% of older adults died at home, followed by hospital (33.1%), and nursing or hospice facility (28.0%). In an adjusted multinomial logistic regression, decedents with larger household size (odds ratio [OR]: 0.441; 95% confidence interval [CI]: 0.269–0.724) and more daughters (OR: 0.743 [95% CI: 0.575–0.958]) had lower odds of dying in nursing or hospice facility relative to dying at home. For older adults who died at home, caregivers provided 209.8 h of help at LML. In contrast, when death occurred in nursing or hospice facility, caregivers provided 91.6 fewer hours of help, adjusted for decedent and caregiver characteristics. Dying in hospital was associated with higher odds of caregiver emotional difficulty relative to home deaths (OR: 4.093 [95% CI: 1.623–10.323]). Conclusions: Household size and number of daughters are important determinants of place of death. Despite dying at home being associated with more hours of direct caregiving; caregiver emotional strain was experienced as higher for hospital deaths. Better support services for end‐of‐life caregivers might improve patient and caregiver experiences for home and hospital deaths.

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Caregiver Social Status and Health-Related Quality of Life in Neurologically Impaired Children on Home Enteral Nutrition

Background: We aimed to investigate the association between caregiver social status and health-related quality of life (HRQoL) in children with neurological impairment (NI) on home enteral nutrition (HEN). Methods: This was an ancillary study of a multicenter, cross-sectional study which explored HRQoL in 75 NI children on HEN. All the caregivers from the original cohort were contacted, and data on education level, occupation and marital status were collected. The association between social status and HRQoL was investigated using a multiple Poisson Generalized Linear Model. In total, 93 caregivers were included, responsible for the care of 71 children. The caregivers of four children of the original cohort did not answer the questionnaire. Results: Mothers with high-level education presented lower HRQoL in comparison to mothers with low-level (β: −5.97; 95% CI −11.51, −0.10; p = 0.027) or medium-level education (β: 4.85; 95% CI −9.87, 0.53; p = 0.044). The analysis of the subgroup of cases in which the main caregiver was represented by both parents gave similar findings, with education level of the father being negatively correlated with HRQoL. Conclusions: Our data showed that higher education level may negatively affect quality of life of caregivers of NI children. This could be helpful in identifying at-risk families and addressing supportive efforts.

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Caregiver Response to an Online Dementia and Caregiver Wellness Education Platform

Background: Web-based educational interventions are emerging as a potential solution to improve caregiver dementia knowledge and overall well-being. Objective: To assess the feasibility of delivering a web-based intervention for dementia caregivers by examining: 1) engagement with the online platform, 2) skill implementation, and 3) changes on outcome metrics over the 30-day study period. Methods: Enrolled participants were onboarded by a trained research coordinator and provided 24/7 access to the platform over 30 days. At study onset and completion, caregivers completed assessments of care recipient dementia severity and neuropsychiatric symptoms along with instruments which measured dementia knowledge, caregiver burden, and carer experience. Results: Of 84 referrals, 60 caregivers met study inclusion criteria and 55 completed pre and post study measures. Caregivers completed an average of 8 hours of learning over the 30-day web-based intervention, with 84.4%of participants reporting using at least one skill they learned from the online platform. Eighty-nine percent of participants reported high satisfaction with the web-based educational intervention. There were small effect sizes for decreases in NPIQ neuropsychiatric symptom severity and caregiver distress scores from pre- to post-intervention. Small effect sizes were observed for changes in caregiver burden from pre- to post-intervention among caregivers who perceived their care recipient as having high global deterioration. Conclusion: Findings show online educational programs are feasible for informal family caregivers of dementia and have perceived value. Future studies should address caregiver response to online education in less severe versus more severe care recipients, and explore the value of caregiver online platforms in diverse caregiver samples. 

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Caregiver distress and quality of life in primary caregivers of oncology patients in active treatment and follow‐up

Objective: As the number of informal caregivers and their caregiving responsibilities increase, this study aims at evaluating caregiver distress, quality of life (QoL) and their predictors in informal caregivers of cancer patients during active treatment and follow‐up. Methods: This cross‐sectional descriptive study targeted primary caregivers of patients with different cancer diagnoses. Caregiver‐reported outcomes were measured by the Caregiver Risk Screen (CRS), Distress Thermometer (DT) and Caregiver Quality of Life Index—Cancer (CQOLC). Results: Caregivers (n = 1580) experienced a low‐to‐moderate risk of caregiver distress and a moderate QoL during both treatment and follow‐up. About 13% reported a high caregiver risk and 20% reported severe distress. There was a strong and significant correlation between caregiver distress and caregivers' QoL (0.793). Predictive factors for higher distress and poorer QoL were: fewer emotional and practical resources, being female, non‐spousal relationship or not living together (p < 0.05). Caregivers of patients with head‐and‐neck, skin, lung and brain cancers reported the highest distress and lowest QoL. Conclusion: Caregiver distress is highly variable, but a minority of caregivers is at high risk for caregiver distress. Professional caregivers play an important role at supporting caregivers and detecting high‐risk caregivers.

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Caregiver Characteristics and Outcomes Associated With Level of Care Complexity for Older Adults

Background: Care in the home is increasingly complex, with family caregivers now expected to take on aspects of care previously managed by nurses and other health professionals. Method: In a national sample of caregivers of older adults, we examined predictors and outcomes of level of care (low, medium, high) based on caregiving hours and counts of activities of daily living (ADLs) and instrumental ADLs supported. Results: Characteristics associated with high level of care include Hispanic or “other” race/ethnicity, being unemployed, and specific care recipient conditions (e.g., Alzheimer's disease/dementia, cancer, mobility limitations). High compared to low level of care is also associated with caregiving difficulty and unmet needs. Conclusions: These findings underscore the need for targeted interventions and nursing research to further understand the features and dynamics of care complexity. Such research can inform family-centered interventions, health care system redesign, and health policies to support family caregivers of older adults engaged in complex care. 

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Caregiver burden, psychological distress and hopelessness among carers of thalassemia patients

Objective: To assess the relationship between care giver burden, hopelessness and Psychological distress. To explore the impact of care giver burden on Psychological distress and mediating role of hopelessness among carers of Thalassemia patients. Study Design: Descriptive cross-sectional study. Place and Duration of Study: At the Thalassemia center of The Children’s Hospital &amp; the Institute of Child Health Multan, Pakistan, in seven month from 17th November 2018 to 26th March 2019. Material and Methods: Two hundred and forty (240, 48.3% males and 51.6% female) carers of Thalassemia patients were assessed on Burden Scale for Family Caregivers (BSFC), Kessler Psychological Distress Scale (K10) and Beck Hopelessness Scale (BHS). Results: Findings showed that caregiver burden was positively correlated with psychological distress (p&lt;0.01) and hopelessness (p&lt;0.01). Results also revealed that caregiver burden significantly positively predicted hopelessness (p&lt;0.00) and hopelessness mediated the relationship between care giver burden and psychological distress (p&lt;0.00). Outcomes also illustrated that there were differences on care giver burden (p&lt;0.01), Psychological distress (p&lt;0.00) and hopelessness (p&lt;0.00) among carers of patients with thalassemia disorders on the ground of carer’s gender. Conclusion: Care giver burden, Psychological distress and Hopelessness are interlinked phenomenon, while male have more hopelessness and female have more care giver burden and psychological distress. 

Caregiver Burden with Alzheimer’s and Dementia Patients: A Systematic Literature Review

Background: As the aging population increases, the rates of degenerative diseases associated with advanced age, such as Alzheimer’s disease and dementia, also rise. Thus, the caregiver population grows in response, increasing the rates of caregiver burden. Caregivers of older adults are usually family members, and providing care to older adults with Alzheimer’s disease and dementia can be very physically and emotionally depleting for the caregivers, leading to negative consequences on the physical and mental health of the caregivers; subsequently leading to caregiver burden. Methods: This systematic literature review examined articles within the APA PsychInfo database related to informal caregivers of Alzheimer’s and dementia patients, caregiver burden, risk factors associated with caregiver burden such as gender, kinship, cohabitation, and marriage status, and coping strategies, interventions, and resources that aid in mitigation of caregiver burden for these types of caregivers. Findings: This search yielded 26 studies that were included based on having met the eligibility criteria. Findings suggest that there are several risk factors associated with increased rates of caregiver burden in this caregiver population. Results addressed the benefits of coping strategies, interventions, and accessible resources on informal caregivers’ QOL and impacts on caregiver burden. Implications regarding ideal and accessible coping strategies and appropriate interventions for informal caregivers of individuals diagnosed with Alzheimer’s disease and dementia was addressed. 

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Caregiver burden versus intensity of anxiety and depression symptoms in parents of children with cerebral palsy as well as factors potentially differentiating the level of burden: a cross-sectional study (Poland)

Objectives: To assess the relationship between caregiver burden and severity of symptoms of anxiety/depression in parents of children with cerebral palsy (CP), and to identify factors differentiating the level of caregiver burden. Setting: Regional rehabilitation centres in South-Eastern Poland.ParticipantsThe study involved 190 parents of children with CP, that is, 138 women and 52 men. Primary and secondary outcome measures: Caregiver burden was assessed using Caregiver Burden Scale (CBS), while the intensity of anxiety and depression symptoms was measured using Hospital Anxiety and Depression Scale (HADS). Potential predictors were examined using Gross Motor Function Classification System for Cerebral Palsy (GMFCS), Barthel Index (BI) as well as a questionnaire focusing on the characteristics of the child, the parent and the family. The analyses applied Pearson’s linear correlation coefficient as well as multiple regression analysis. Results: All the CBS measures are significantly correlated to HADS-A (anxiety) and HADS-D (depression). Intensity of anxiety is most visibly linked to CBS measures of disappointment and environment (p<0.0001), while severity of depression is related to emotional involvement and general strain (p<0.0001). The factors differentiating caregiver burden measure in the subscales of general strain (p<0.0001) and social isolation (p<0.0001) include the child’s age and BI, and the parent’s health status; in the subscale of disappointment (p<0.0001)—the child’s age, BI, GMFCS, as well as the parent’s age and health status; in the subscale of emotional involvement (p=0.0007)—BI, and the parent’s health status; in the subscale of environment (p=0.0002)—the child’s age and BI. Conclusions: There is a positive linear relationship between the caregiver burden measures and severity of anxiety and depression. Effort should be made to relieve caregiver burden in parents of children with CP.

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Caregiver burden in Buruli ulcer disease: Evidence from Ghana

Background: Buruli ulcer disease (BUD) results in disabilities and deformities in the absence of early medical intervention. The extensive role of caregiving in BUD is widely acknowledged, however, associated caregiver burden is poorly understood. In this paper we assessed the burden which caregivers experience when supporting patients with BUD in Ghana. Method: principal findings This qualitative study was conducted in 3 districts in Ghana between August and October 2019. 13 semi-structured interviews were conducted on caregivers of BUD patients in the local language of Twi. Data was translated into English, coded into broad themes, and direct content analysis approach was used to analyse results. Results: The results show the caregivers face financial, psychological and health issues as a consequence of their caregiving role. Conclusion/significance: This study found significant caregiver burden on family members. It also highlighted the psychological burden caregivers experience and the limited knowledge of the disease within endemic communities. Further research is needed to quantify the caregiver burden of BUD at different economic levels in order to better understand the impact of possible caregiver interventions on patient outcomes.

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Caregiver Burden for People with Schizophrenia in Medan, Indonesia

The article focuses on the Caregiver Burden for People with Schizophrenia in Medan, Indonesia. Topics discussed include Caregiving for a family member with a chronic and/or major illness is held as an obligation in many cultures; and interviews were digitally recorded and transcribed, with transcriptions checked for accuracy; and participants were deidentified in the transcripts, and analysis was performed using thematic analysis.

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Caregiver burden and related factors during active cancer treatment: A latent growth curve analysis

Background: Caregiver burden is frequently studied cross-sectionally, but longitudinal studies on family caregiver burden during active cancer treatment are lacking. The goals of this study were to characterize trajectories of caregivers' burden during a 6-month active treatment period, and to examine which predictors are associated with their burden. Methods: This study was a secondary analysis of data from a prospective study. A sample of 112 family caregivers of patients receiving cancer treatment were assessed at three time points (the initiation of new treatment regimen, 3-, and 6-month follow-up). Caregivers completed measures: Caregiver Reaction Assessment and Mutuality Scale of the Family Care Inventory. Data were analyzed using latent growth curve modeling. Results: The two highest burdens were subdomains related to disrupted schedule and financial problems. Models showed a decline in schedule burden over time, yet total burden and other subscales (financial problems, health problems, and lack of family support and self-esteem) remained relatively stable. In multivariate analysis, mutuality, the relationship quality between patients and caregivers was inversely related to burden at baseline. Being a spouse, a sole caregiver and lower income were related to higher burden over time. Our findings confirmed significant determinants of caregiver burden over the course of active treatment. It is important for health care providers to be attentive to vulnerable caregivers who are at higher risk of elevated burden over time. Conclusions: Considering the multidimensional nature of caregiver burden, early assessment and tailored support programs may be effective by focusing on patient-caregiver relationships, caregiving roles, and income. • Latent growth modeling is useful for examining baseline levels and changes of caregiver burden. • Patterns over time and factors that influence burden differ, based on each burden dimension. • Caregivers who are spouses, sole caregivers, and have lower income were more at risk for higher burden over time.

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Caregiver burden and quality of life among family caregivers of cancer patients on chemotherapy: A prospective observational study

Aim: Informal caregivers of cancer patients have extensive burdens. They are susceptible for deterioration of their quality of life (QOL). We aimed to assess caregiver burden and QOL of family caregivers of cancer patients receiving chemotherapy admitted in the ward/intensive care unit/high-dependency unit. Materials and Methods: This prospective observational study including 178 caregivers was carried out in a tertiary care hospital. The assessment of caregiving burden was done using the Zarit Burden Interview and its impact on QOL using the WHO BREF QOL questionnaire. Results: The mean age and mean Zarit Burden score of caregivers were 38.98 ± 10.53 and 30.697 ± 8.96, respectively. Of the total, 70.22% of caregivers reported mild-to-moderate burden and 21.38% reported moderate-to-severe burden. On assessment of QOL WHO BREF, the mean general score was 5.79 ± 1.84, physical health score was 49.65 ± 16.07, psychological health 51.85 ± 20.43, social relations 59.38 ± 21.43, and environmental 58.73 ± 17.51. The QOL scores were slightly better in mild-to-moderate burden compared to moderate-to-severe burden but not statistically significant except for social relations (P = 0.053). We did not find any difference in burden scores or QOL between male and female caregivers. Conclusion: Mild-to-moderate burden was seen in 70.22% of caregivers and 21.38% had moderate-to-severe burden.

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Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study

Objective: To examine interrelations between care-related burden on informal caregivers and their proxy assessments of outcomes in people without natural speech. Design: A cross-sectional survey. Setting: Data were collected in January 2019 from a postal survey of informal caregivers of people without natural speech who are insured by a large regional health insurance company in the German federal state of Lower Saxony. Participants: n=714 informal caregivers of people without natural speech of all ages and with various underlying disabilities were identified and contacted via the health insurance company. Data from n=165 informal caregivers (26.4%) were obtained. Main outcome measures: Caregiver burden (self-reported, Burden Scale for Family Caregivers), pragmatic communication skills of people without natural speech (proxy report, self-developed), health-related quality of life of people without natural speech (proxy report, DISABKIDS Chronic Generic Measure - DCGM-12) and functioning of people without natural speech (proxy report, WHO Disability Assessment Schedule 2.0). Results: The analyses revealed significant associations between caregiver burden on the one hand and both proxy-reported health-related quality of life (b=−0.422; p≤0.001) and functioning (b=0.521; p≤0.001) on the other. Adding caregiver burden to the regression model leads to a substantial increase in explained variance in functioning (R² Model 1=0.349; R² Model 2=0.575) as well as in health-related quality of life (R² Model 1=0.292; R² Model 2=0.460). Conclusions: Caregiver burden should be considered an important determinant when informal caregivers report outcomes on behalf of people without natural speech. Longitudinal studies are recommended to better understand the burdens experienced by caregivers when supporting people without natural speech.

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Caregiver Burden and Compassion Fatigue Among Arab Family Caregivers of Older Relatives

Objectives: To examine the associations and the mechanisms between caregiver burden and compassion fatigue among family caregivers. Method: A cross-sectional study comprising 300 family caregivers of older relatives in Arab communities in Israel was conducted. Data were collected via face-to-face interviews in Arabic using structured questionnaires to identify factors associated with compassion fatigue (using a secondary traumatization stress scale). Bootstrapping with resampling strategies tested the multiple mediator model. Main findings: The results show a significant total effect of caregiver burden on compassion fatigue (b = 3.79, t (300) = 3.47, p <.001; R 2 =.50). This association was found to be partially mediated by family support (B =.81, 95% confidence interval [CI] = 0.23, 1.85) and disengagement coping (B =.97, 95% CI = 0.19, 2.14), but was not mediated by engagement coping strategies. Conclusion: Compassion fatigue is prevalent among family caregivers and requires more attention from professionals and policymakers.

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Adapting a guided low-intensity behavioural activation intervention for people with dementia and depression in the Swedish healthcare context (INVOLVERA): a study protocol using codesign and participatory action research

Introduction: Dementia is a worldwide health concern with incident rates continuing to increase. While depression prevalence is high in people with dementia and psychological interventions such as cognitive behavioural therapy (CBT) are effective, access to psychological interventions remains limited. Reliance on traditional CBT for people with dementia and depression may present difficulties given it is a complex psychological approach, costly to deliver, and professional training time is lengthy. An alternative approach is behavioural activation (BA), a simpler psychological intervention for depression. The present study seeks to work with people with dementia, informal caregivers, community stakeholders, and healthcare professionals, to adapt a guided low-intensity BA intervention for people with dementia and depression, while maximising implementation potential within the Swedish healthcare context. Methods and analysis: A mixed methods study using codesign, principles from participatory action research (PAR) and normalisation process theory to facilitate the cultural relevance, appropriateness and implementation potential of the intervention. The study will consist of four iterative PAR phases, using focus groups with healthcare professionals and community stakeholders, and semi-structured interviews with people with dementia and informal caregivers. A content analysis approach will be adopted to analyse the transcribed focus groups and semi-structured interviews recordings. Ethics and dissemination: The study will be conducted in accordance with the Declaration of Helsinki and data handled according to General Data Protection Regulation. Written informed consent will be obtained from all study participants. In accordance with the Swedish Health and Medical Services Act, capacity to consent will be examined by a member of the research team. Ethical approval has been obtained from the Swedish Ethical Review Authority (Dnr: 2020-05542 and Dnr: 2021-00925). Findings will be published in an open access peer-reviewed journal, presented at academic conferences, and disseminated among lay and healthcare professional audiences.

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Caregiver Burden and Associated Factors for the Respite Care Needs among the Family Caregivers of Community Dwelling Senior Citizens in Chiang Mai, Northern Thailand

Background: Families are the backbone of caregiving for older adults living in communities. This is a tradition common to Thailand and many low- and middle-income countries where formal long-term care services are not so available or accessible. Therefore, population aging demands more and more young people engaging as family caregivers. Informal caregiving can become an unexpected duty for anyone anytime. However, studies measuring the burden of informal caregivers are limited. We aimed to determine the caregiver burden, both from the perspective of the caregivers as well as that of their care recipients. Method: We used the baseline survey data from a cluster randomized controlled trial providing a community integrated intermediary care (CIIC) service for seniors in Chiang Mai, Thailand, TCTR20190412004. Study participants were 867 pairs of older adults and their primary family caregivers. Descriptive analysis explored the characteristics of the caregivers and binary logistic regression identified factors influencing the caregivers’ burden. Results: The mean age of family caregivers was 55.27 ± 13.7 years and 5.5% indicated the need for respite care with Caregiver Burden Inventory (CBI) scores ≥24. The highest burden was noted in the time-dependence burden domain (25.7%). The significant associated factors affecting CBI ≥24 were as follows: caregivers older than 60 years, being female, current smokers, having diabetes, and caring for seniors with probable depression and moderate to severe dependency. Conclusions: A quarter of caregivers can have their careers disturbed because of the time consumed with caregiving. Policies to assist families and interventions, such as respite service, care capacity building, official leave for caregiving, etc., may reduce the burden of families struggling with informal care chores. Furthermore, caregiver burden measurements can be applied as a screening tool to assess long-term care needs, complementing the dependency assessment. Finally, implementation research is required to determine the effectiveness of respite care services for older people in Thailand.

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Caregiver burden and associated factors amongst carers of women with advanced breast cancer attending a radiation oncology clinic in Nigeria

Background: The responsibility of caring for patients with advanced cancer in sub-Saharan Africa is mostly shouldered by family members because of paucity of institutional facilities. There is a growing concern that the number of women needing treatment for advanced breast cancer is rising at an unprecedented rate in Nigeria. Aim: To assess the caregiver burden and its associated factors amongst family caregivers of women with advanced breast cancer. Setting: The study was conducted at the radiation oncology clinic of the University College Hospital, Ibadan, Nigeria. Methods: A cross-sectional descriptive study was conducted amongst 157 eligible family caregivers of women with advanced breast cancer. The family caregivers completed an interviewer-administered questionnaire, which included the socio-demographic data, the caregiving process and the Zarit Burden Interview (ZBI). Logistic regression was used to identify factors, and ethical approval was obtained. Results: Over half (53%) of the respondents were males with spousal caregivers dominantly constituting 27.4% of all respondents, closely followed by daughters (25.5%) of the care recipients. The mean ZBI score was 29.84 ± 13.9. Most (72%) of the caregivers experienced burden. Factors associated with caregiver burden were previous hospitalisation of the care recipient (odds ratio [OR] = 3.74, confidence interval [CI]: 1.67 to 8.38) and perceived dysfunction in patients activities of daily living (OR = 2.57, CI: 1.14 to 5.78). Conclusion: Family caregivers of women with advanced breast cancer experience burden of care. Recognition of this vulnerable population and the care recipient as a dyad is a sine qua non in mitigating the burden associated with their caregiving role. 

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Caregiver Burden among Informal Caregivers in the Kerala Palliative Care Program: Development and Validation of the Achutha Menon Centre-Caregiver Burden Inventory

Background: Family caregivers of bedridden or homebound patients are at risk of adverse physical and psychological outcomes. There is a need for a culturally adapted and valid instrument for measuring caregiver burden in palliative care programs. Objective: To develop a reliable and valid instrument to measure the self-perceived burden of informal caregivers of patients with serious health-related suffering. Design/Setting: "Caregiver burden" was conceptualized based on literature review and in-depth interviews. Content validity assessment, cognitive interviews, and a cross-sectional survey were used to develop and validate the instrument. The study was set within the primary palliative care program in Kerala, India. Subjects: Ten palliative care professionals and 10 caregivers were engaged for the content validity assessment and cognitive interviews, respectively. The cross-sectional survey was conducted among 221 (males = 21) family caregivers in Kollam district, Kerala. The Institutional Ethics Committee of the Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum reviewed and cleared the study. Measurements: Underlying factors were identified by using principal axis factoring. The corresponding sub-scales and a composite scale were tested for internal consistency, construct validity, reproducibility, floor and ceiling effects, and interpretability. Results: Two factors that explained 29.5% of the variance were extracted. Two sub-scales-consequences of caregiving and lack of financial security-were derived. The final nine-item Likert-Type Achutha Menon Centre-Caregiver Burden Inventory (AMC-CBI) had a content validity index of 0.77, Cronbach's alpha of 0.82, and high test-retest reliability (ρ = 0.87, p < 0.001). Conclusion: The AMC-CBI is a valid and reliable instrument for burden assessment of caregivers of patients served by the home-based palliative care program in Kerala, India. 

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The care needs of persons with oropharyngeal dysphagia and their informal caregivers: A scoping review

Introduction: Besides affecting physical health, Oropharyngeal Dysphagia (OD) entails limitations in daily activities and social participation for both patients and their informal caregivers. The identification of OD-related needs is crucial for designing appropriate person-centered interventions. Aims: To explore and map the literature investigating the care needs related to OD management of adult persons with OD and their informal caregivers during the last 20 years. Methods: A scoping review was conducted and reported following PRISMA guidelines. Five electronic databases and reference lists of eligible publications were searched for original works in English or Italian, published between January 2000 and February 2021. Two independent raters assessed studies’ eligibility and extracted data; a third rater resolved disagreements. Extracted care needs were analyzed using a Best fit framework synthesis approach. Results: Out of 2,534 records preliminarily identified, 15 studies were included in the review and 266 care needs were extracted. All studies were conducted in Western countries. Research methods primarily consisted of qualitative interviews and focus groups (14 studies, 93.3%); head and neck cancer was the most frequent cause of patients’ dysphagia (8 studies, 53.3%); caregivers’ perspective was seldom investigated (5 studies, 33.3%). Both patients and caregivers primarily reported social (N = 77; 28.9%) and practical (N = 67; 25.2%) needs, followed by informational (N = 55; 20.7%) and psychological (N = 54; 20.3%) ones. Only patients reported physical needs (N = 13; 4.9%), while spiritual needs were not cited. Conclusions: The recurrence of personal and social needs besides physical ones highlighted the manifold impact of OD on patients’ and caregivers’ lives. Larger and more focused studies are required in order to design tools and interventions tailored to patients’ and caregivers’ needs.

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Care difficulties and burden during COVID‐19 pandemic lockdowns among caregivers of people with schizophrenia: A cross‐sectional study

Aims: The purpose of this study was to retrospectively investigate care difficulties experienced by caregivers of people with schizophrenia during COVID‐19 pandemic lockdowns in Japan (April 7‐May 25, 2020) and examine associations between these care difficulties during lockdowns and daily caregiver burden. Methods: Data were collected from 132 participants of the LINE Schizophrenia Family Association using an online survey. Results: Caregivers were mostly concerned about who would care for people with schizophrenia if caregivers become infected with COVID‐19. A significant association was found between higher daily caregiver burden and more difficult care experiences during COVID‐19 pandemic lockdowns (B = 0.58, 95% confidence interval, 0.40‐0.75, P < .01, adjusted R‐squared = .34). Conclusions: Further studies and supports for caregivers of people with schizophrenia are needed.

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Care burden dimensions of informal caregivers having patients with bipolar disorder (challenges and alternatives) (qualitative study)

Background: Taking care of patients with bipolar disorder (BD) makes critical challenges for their informal caregivers (ICGs) and forces them to tolerate considerable burden. This qualitative study explored the dimensions of ICGs' care burden (CB) based on their own experiences and the patients' therapists. Materials and methods: This is a qualitative study which was conducted based on conventional content analysis through semistructured and in-depth interviews. Purposive sampling was used to select the participants including 13 ICGs and 14 therapists (2 psychiatrists, 10 psychiatric nurses, and 2 clinical psychologists). Interviews were audiotaped, transcribed verbatim, and analyzed using Graneheim's 2004 principles. Results: Qualitative analyses yielded three major themes: 'challenges associated with the nature of BD,' 'challenges related to the ICGs,' and 'challenges related to interventions.' The categories of the first theme entailed 'individual-oriented characteristics of BD' and 'social-oriented characteristics of BD.' The categories of the second theme consisted of 'social stigma,' 'psychiatric problems and helplessness of ICGs,' 'financial costs related to providing cares,' and 'insufficient self-efficacy of ICGs in cares provision.' The categories of the last theme included 'educational interventions' and 'organizational interventions.' Conclusions: This study showed that the burden of ICGs have individual, social, and organizational aspects. Every one of them impacts the severity of their burden remarkably. The depth of the therapists' experiences has a significant role in designing the interventions to reduce this burden. The present investigation emphasized the constitution of a comprehensive framework related to all factors affecting burden in a developing country. 

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Acceptance and commitment therapy for fatigue interference in advanced gastrointestinal cancer and caregiver burden: protocol of a pilot randomized controlled trial

Background: Fatigue interference with activities, mood, and cognition is one of the most prevalent and bothersome concerns of advanced gastrointestinal (GI) cancer patients. As fatigue interferes with patient functioning, family caregivers often report feeling burdened by increasing responsibilities. Evidence-based interventions jointly addressing cancer patient fatigue interference and caregiver burden are lacking. In pilot studies, acceptance and commitment therapy (ACT) has shown promise for addressing symptom-related suffering in cancer patients. The current pilot trial seeks to test a novel, dyadic ACT intervention for both advanced GI cancer patients with moderate-to-severe fatigue interference and their family caregivers with significant caregiving burden or distress. Methods: A minimum of 40 patient-caregiver dyads will be randomly assigned to either the ACT intervention or an education/support control condition. Dyads in both conditions attend six weekly 50-min telephone sessions. Outcomes are assessed at baseline as well as 2 weeks and 3 months post-intervention. We will evaluate the feasibility, acceptability, and preliminary efficacy of ACT for improving patient fatigue interference and caregiver burden. Secondary outcomes include patient sleep interference and patient and caregiver engagement in daily activities, psychological flexibility, and quality of life. We will also explore the effects of ACT on patient and caregiver physical and mental health service use. Discussion: Findings will inform a large-scale trial of intervention efficacy. Results will also lay the groundwork for further novel applications of ACT to symptom interference with functioning and caregiver burden in advanced cancer. Trial Registration ClinicalTrials.gov, NCT04010227. Registered 8 July 2019.

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Care Burden and Coping Strategies among Caregivers of Paediatric HIV/AIDS in Northern Uganda: A Cross-Sectional Mixed-Method Study

Background: Family caregivers provide the bulk of care to children living with HIV. This places an enormous demand and care burden on the caregivers who often struggle to cope in various ways, some of which may be maladaptive. This may adversely affect their quality of care. Very little literature exists in resource-limited contexts on the burden of care experienced by caregivers on whom children living with HIV/AIDS depend for their long-term care. We assessed care burden and coping strategies among the caregivers of paediatric HIV/AIDS patients in Lira district, northern Uganda. Methods: A mixed-method cross-sectional study was conducted among 113 caregivers of paediatric HIV patients attending the ART clinic at a tertiary healthcare facility in Lira district, northern Uganda. A consecutive sampling method was used to select participants for the quantitative study, while 15 respondents were purposively sampled for the qualitative data. Quantitative data were collected using standard interviewer-administered questionnaires, while in-depth interview guides were used to collect qualitative data. Data were entered, cleaned, and analysed using SPSS version 23. Qualitative data were analysed thematically. Results: The majority of the caregivers, 65.5% (74), experienced mild-to-moderate burden. The mean burden scores significantly differed by caregivers’ age (P=0.017), marital status (P=0.017), average monthly income (P=0.035), and child’s school attendance (P=0.039). Accepting social support, seeking spiritual support, and reframing were the three most commonly used strategies for coping. Marital status and occupation were, respectively, positively and negatively correlated with information-seeking as a coping strategy, while monthly income was positively correlated with psychosocial support as a strategy. Seeking community support was negatively correlated with the duration of the child’s care. Conclusions: Our findings show that care burden is a common problem among the caregivers of children living with HIV in the study context.

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The capacity of informal caregivers in the rehabilitation of older people after a stroke

Objective: To characterize informal caregivers of dependent older people after a stroke related to aspects of care, and to describe the activities performed and the difficulties faced by these caregivers. Methods: Cross-sectional, descriptive study, held in southern Brazil with 190 informal caregivers of older adults after stroke. The sociodemographic data instrument and the Capacity Scale for Informal Caregivers of Elderly Stroke Patients (ECCIID-AVC), adapted and validated for use in Brazil by Dal Pizzol et al., were used. Results: Most caregivers were women (82.6%) or children (56.3%), had average schooling of 9.6 years, and the majority (68.3%) provided care for people with moderate to severe disability. The main activities carried out included: providing materials and/or support for eating (99%), dressing (98.4%), and administering medications (96.2%). Caregivers had the most difficulty with transferring and positioning activities. Conclusion: Most caregivers have adequate capacity to provide essential care to the dependent older adult after a stroke. However, a significant portion had difficulty in the activities of transferring and positioning the older person due to the lack of guidance regarding the posture to carry out these activities. The assessment of nurses regarding the activities performed and the difficulties faced by caregivers is an important strategy to identify problems and effectively attend to the needs of these individuals at all levels of health care.

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Cancer caregivers unmet needs and emotional states across cancer treatment phases

Study objective: To investigate the association between family cancer caregivers’ unmet daily needs and emotional states of depression, anxiety and stress across their care recipient’s treatment phases. Method: A cross-sectional study design and self-report questionnaires were used. Family caregivers (N = 237) of cancer patients in ambulatory cancer clinics were recruited from May to December 2017, and completed a sociodemographic and medical questionnaire, the Depression Anxiety Stress Scale and Needs Assessment of Family Caregivers-Cancer Scale. Hierarchical linear regression was conducted to examine the influence of each predictor (sociodemographic variables, unmet personal care and role management needs, cancer treatment phase) on the Depression Anxiety Stress Scale total score, depression subscale, anxiety subscale, and the stress subscale. Results: Family caregivers’ unmet daily activity needs, in particular higher unmet personal care needs, during the intermediate phase (6–9 months), were significantly associated (ps<0.05) with overall distress (b = 4.93) and stress (b = 2.26). In the chronic treatment phase (>9 months), the significant association of unmet personal care needs was with overall distress (b = 5.91), anxiety (b = 1.97) and stress (b = 2.53). After completing treatment, unmet role management needs were only significantly associated with stress (b = -1.59). Caregivers’ higher depression was also associated with greater unmet role management needs, regardless of treatment phases. Conclusions: Intermediate and chronic cancer treatment phases were identified as having greatest effect on caregivers’ unmet daily activity needs and emotions. Unmet personal care needs played the major effect on overall negative emotional states in the intermediate treatment phase and stress in the chronic treatment phase. Close attention to caregivers needs in intermediate and chronic treatment phases, would be highly beneficial in alleviating negative emotional disturbances.

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Calculation and Analysis of Family Care Burden Coefficient

The family care burden can be identified by measuring the family support burden coefficient, the support burden coefficient and the family special disability, the patient population care coefficient three quantifiable numerical indicators to identify the most urgent housing needs.

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Business Models of eHealth Interventions to Support Informal Caregivers of People With Dementia in the Netherlands: Analysis of Case Studies

Background: In academic research contexts, eHealth interventions for caregivers of people with dementia have shown ample evidence of effectiveness. However, they are rarely implemented in practice, and much can be learned from their counterparts (commercial, governmental, or other origins) that are already being used in practice. Objective: This study aims to examine a sample of case studies of eHealth interventions to support informal caregivers of people with dementia that are currently used in the Netherlands; to investigate what strategies are used to ensure the desirability, feasibility, viability, and sustainability of the interventions; and to apply the lessons learned from this practical, commercial implementation perspective to academically developed eHealth interventions for caregivers of people with dementia. Methods: In step 1, experts (N=483) in the fields of dementia and eHealth were contacted and asked to recommend interventions that met the following criteria: delivered via the internet; suitable for informal caregivers of people with dementia; accessible in the Netherlands, either in Dutch or in English; and used in practice. The contacted experts were academics working on dementia and psychosocial innovations, industry professionals from eHealth software companies, clinicians, patient organizations, and people with dementia and their caregivers. In step 2, contact persons from the suggested eHealth interventions participated in a semistructured telephone interview. The results were analyzed using a multiple case study methodology. Results: In total, the response rate was 7.5% (36/483), and 21 eHealth interventions for caregivers of people with dementia were recommended. Furthermore, 43% (9/21) of the interventions met all 4 criteria and were included in the sample for the case study analysis. Of these 9 interventions, 4 were found to have developed sustainable business models and 5 were implemented in a more exploratory manner and relied on research grants to varying extents, although some had also developed preliminary business models. Conclusions: These findings suggest that the desirability, feasibility, and viability of eHealth interventions for caregivers of people with dementia are linked to their integration into larger structures, their ownership and support of content internally, their development of information and communication technology services externally, and their offer of fixed, low pricing. The origin of the case studies was also important, as eHealth interventions that had originated in an academic research context less reliably found their way to sustainable implementation. In addition, careful selection of digital transformation strategies, more intersectoral cooperation, and more funding for implementation and business modeling research are recommended to help future developers bring eHealth interventions for caregivers of people with dementia into practice.

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Burden on family caregivers of children and adolescent in immediate post hematopoietic stem cell transplantation

Objective: To evaluate the burden on family caregivers of children and adolescents in immediate post hematopoietic stem cell transplantation. Method: Study of quantitative nature, of analytical and traverse type, accomplished in two institutions of health with 31 caregivers of children and adolescents in immediate post transplantation. The data collection was accomplished between October of 2018 and June of 2019. The caregivers' social demographic profile was characterized, and the burden was evaluated by Caregiver Burden Scale. The descriptive statistics and the Spearman correlation were used. Results: It was obtained a burden global score of 2.4/4; the domains with larger scores were: general stress and frustration, both with 2.8/4. Conclusion: The understanding of how the family faces the challenges imposed by the immediate post hematopoietic stem cell transplantation guides the multiprofessional team a care centered in the family and to offer maximum support and guidance to the caregiver.

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The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs

Aim: This study aims to reveal the problems faced by families of children with spinal muscular atrophy (SMA), by evaluating their care burden, needs, and expectations. Materials and Methods: The participants were the primary caregivers of 34 children between the ages of 0 and 18 years diagnosed with SMA. Thirteen children were diagnosed with type 1, 13 children with type 2 and 8 children with type 3 SMA. Data on the medical history, functional levels of the participants, and the characteristics of families were collected. The childrens' parents completed the Family Needs Survey and the Zarit Caregiver Burden Scale. Results: According to the results of the Family Needs Survey, it was found that information was the most common requirement, and this was independent of the level of education. According to the Caregiver Burden Scale, it was recorded that 64.7% of the caregivers were under mild/ moderate burden. While there was a moderate correlation (r = 0.574; P < .001) between the Caregiver Burden Scale and the Family Needs Survey, it was observed that the functional level of the child was not associated with family needs and caregiver burden. Conclusions: Our study suggests that the needs of families of SMA patients, especially related to income level, have changed. The caregivers' burden is not directly related to the income level or the functional level of the child. Families' need for information should also be prioritized within the rehabilitation program.

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Burden and depression among Jordanian caregivers of hemodialysis patients: A cross-sectional study

Introduction: Caring for patients receiving hemodialysis places a burden on caregivers. Objectives: To examine caregiving burden and depression in the family caregivers of patients receiving hemodialysis and associated factors. Methods: A cross-sectional design was used. Participants were 204 adult caregivers of patients receiving hemodialysis. Questionnaires included sociodemographic characteristics, the Oberst Caregiving Burden Scale-Difficulty (OCBS-D) subscale, Bakas Caregiving Outcomes Scale (BCOS), and the Patient Health Questionnaire-9 to measure the burden and depression of caregivers. Descriptive statistics, two linear regression analyses, and multinomial logistic regression were used in data analysis. Results: The majority (59.0%, n = 120) of caregivers had a moderate level of depression with scores ranging from 11 to 16. The analysis showed that the mean score of OCBS-D was 42.0 (SD = 4.7) with scores ranging from 26.9 to 58.9 (range = 32.0), while the caregivers' mean score of BCOS was 52.1 (SD = 9.3) with scores ranging from 38.0 to 82.5 (range = 44.5). Given that the expected score of OCBS-D and BCOS ranged from 15 to 75 and 15 to 105, respectively, the analysis indicated a moderate to a high level of burden among caregivers. Age and travel time were associated with a higher likelihood of negative outcomes in the family caregivers, while higher patient age was associated with a greater caregiver burden. Relevance to Clinical Practice: It is important to assess and address the practical issues that caregivers experience, such as employment-related responsibilities, financial difficulties, and the need to learn specific skills related to patients’ chronic illnesses. Conclusion: Caregivers of patients receiving hemodialysis are likely to experience moderate depression and burden. Caregiver burden increases with patient age and travel time to the hemodialysis units. 

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Building family caregiver skills using a simulation-based intervention for care of patients with cancer: protocol for a randomized controlled trial

Background: Family caregivers of patients with cancer undergoing radiation therapy experience significant distress and challenges related to high symptom burden and complex care demands. This is particularly true for caregivers of patients with head and neck, esophageal, anal, rectal, and lung cancers, who are often receiving combined-modality treatment and may have tracheostomy tubes, gastrostomy tubes, or colostomies/ileostomies. This study aims to evaluate a simulation-based nursing intervention to provide information, support, and training to caregivers during radiation therapy. Methods: This randomized controlled trial will include a sample of 180 patients and their family caregivers. Caregivers assigned to the control group will receive usual care and an informational booklet from the National Cancer Institute (NCI). Those in the intervention group will receive usual care, the NCI booklet, and three meetings with a nurse interventionist during radiation treatment followed by a booster call two weeks posttreatment. Intervention sessions focus on themes consistent with the trajectory of radiation therapy: the patient experience/needs, the caregiver experience and dyad communication, and transition to survivorship. Outcomes are measured at baseline, end of treatment (T2), and 4 (T3) and 20 (T4) weeks posttreatment, with the primary outcome being caregiver anxiety at T4. Discussion: This trial is innovative in its use of simulation in a psychoeducational intervention for family caregivers. The intervention is administered at point-of-care and aimed at feasibility for integration into clinical practice. Patient quality of life and healthcare utilization measures will assess how providing support and training to the caregiver may impact patient outcomes. Trial registration: The trial was registered on 08/14/2019 at ClinicalTrials.gov (identifier NCT04055948).

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Bridging the gap: A mixed methods study investigating caregiver integration for people with geriatric syndrome

Introduction: Transitions of care between acute hospital and community settings are points of vulnerability for people with geriatric syndrome. Routinely including informal caregivers into the transition processes may mitigate risk. Guidance for operational aspects of caregiver inclusion is currently lacking in healthcare policy and fails to address the barriers faced by caregivers and healthcare professionals. Methods: A questionnaire and a semi-structured interview were piloted with acute care physiotherapists who facilitate patient discharge into community settings. The questionnaire was analysed using summary statistics and interviews were thematically analysed by researchers, using NVivo 12 software. Results: Questionnaire responses indicated mixed satisfaction with current caregiver integration by the multidisciplinary team. Four themes were shaped in the interviews: inconsistent caregiver engagement, individuals working in a system, an outdated model of care, and invisible care gaps. Discussion: Feedback loops constructed from participant questionnaires and interview responses informed the identification of barriers and solutions. These are system wide and address automated integration, cultural shift, reimbursement models, and flexible structures to enhance informal caregiver participation. Future research is urgently required to translate, implement, and evaluate enhanced caregiver integration to ensure sustainable, person-centred healthcare delivery. 

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Bibliotherapy for improving caregiving appraisal of informal caregivers of people with dementia: A pilot randomized controlled trial

Background: Caregiving appraisal is a key driver to moderating caregiving outcomes. The caregiving appraisal of informal caregivers of people with dementia requires increased attention. This study aimed to explore the feasibility and acceptability of an evidence‐based bibliotherapy protocol, and test the efficacy on improving caregiving appraisal. Design: A two‐arm pilot randomized controlled trial was adopted. Sixty informal caregivers were randomized to either the intervention group, receiving eight weekly professional‐guided bibliotherapy sessions in addition to usual care; or the usual care group. The professional‐guided bibliotherapy sessions were weekly sessions in which caregivers self‐read the designated chapter and then received telephone coaching. Caregiving appraisal, coping, psychological well‐being, positive aspects of caregiving, knowledge of dementia, and attitude toward dementia were assessed both at baseline and immediately after the intervention. Assessors were blinded to group allocation. Individual interviews among 10 participants from the intervention group were conducted to explorecaregivers' acceptance of the intervention. Descriptive statistics, χ2 test, Mann–Whitney U test, independent t test, generalized estimating equation, and content analysis were used for data analysis. This study pioneered the use of bibliotherapy among informal caregivers of people with dementia. Results: The participant recruitment rate was 69.8%. The attrition rate of the intervention group was 20%. Bibliotherapy had a significant time‐by‐group interaction effect on caregiving appraisal (p < 0.001), coping (p = 0.003), positive aspects of caregiving (p = 0.001), knowledge of dementia (p = 0.017), and attitude toward dementia (p < 0.001). The effect on psychological well‐being, however, was only significant on the personal growth subscale (p = 0.025). The acceptability was also confirmed. No adverse event was documented.

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Beyond the Patient: A Mixed-Methods Inquiry Into Family Members’ Involvement in the Treatment of Parkinson’s Disease to Target Third-Party Disability

Purpose: Family members of people with Parkinson’s disease (PD) may experience third-party disability, manifesting as difficulty managing communication breakdowns and changed relationships influenced by communication disorders. This study examined family involvement in therapy to address third-party disability from the perspective of family members of people with PD and speech-language pathologists (SLPs). Method: A mixed-methods design was used with two phases of data collection. In Phase 1 qualitative interviews, nine family members shared their perspectives about their involvement in therapy. In Phase 2, a survey was developed from Phase 1 data to gather data from SLPs (N = 110) on their clinical practices involving family members. Results: Family members and SLPs agreed that when family were involved in therapy, it was primarily to support therapy exercises for the person with PD. Many SLPs reported providing supportive activities for family members. However, qualitative data from family members suggested that the limited involvement they had in therapy did not sufficiently meet their unique needs resulting from communication changes with the person with PD and other related challenges. Constraints influencing family member involvement included insurance billing regulations, privacy laws for patients, and family members’ availability. Conclusions: While some families and SLPs reported efforts to specifically include families and address their needs in therapy, these practices were inconsistent and, from families’ perspectives, insufficient to meet their own needs. Future research should consider family-centered approaches that involve family members in speech-language therapy to enhance their daily lives, along with persons with PD.

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Being the Family Caregiver of a Patient With Dementia During the Coronavirus Disease 2019 Lockdown

Background: Family caregivers of patients with dementia are at high risk of stress and burden and quarantine due to COVID-19 pandemic may have increased the risk of psychological disturbances in this population. The current study was carried out during the national lockdown declared in March 2020 by the Italian government as a containment measure of the first wave of coronavirus pandemic, and is the first nation-wide survey on impact of COVID-19 lockdown on mental health of dementia informal caregivers. Methods: Eighty-seven Dementia Centers evenly distributed on the Italian territory enrolled 4710 caregiver-patient pairs. Caregivers were delivered a telephone interview assessing classical symptoms of caregiver stress and concern for the consequences of COVID-19 infection on patient’s health. We calculated prevalence of symptoms and regressed them on various potential stress risk factors: caregivers' socio-demographic characteristics and lifestyle, patients' clinical features, and lockdown-related elements, like discontinuity in medical care. Results: Approximately 90% of caregivers reported at least one symptom of stress, and nearly 30% reported four or more symptoms. The most prevalent symptoms were Concern for consequences of COVID-19 on patient's health (75%) and Anxiety (46%). The main risk factors for stress were identified as a conflicting relationship with the patient and discontinuity in assistance, but caregiver's female sex, younger age, lower education and cohabitation with the patient also had an impact. Availability of help from institutions or private individuals showed a protective effect against Sense of Abandonment, but a detrimental effect on concern about the risk for the patient to contract COVID-19. The only protective factor was mild dementia severity, which was associated with a lower risk of feeling isolated and abandoned; type of dementia, on the other hand, did not affect stress risk. Conclusion: Our results demonstrate the large prevalence of stress in family caregivers of patients with dementia during COVID-19 pandemic, and has identified both caregivers and situations at higher risk of stress, that should be taken into account in the planning of interventions in support of quarantined families and patients.

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Behavioural and psychological symptoms of dementia in patients with Alzheimer’s disease and family caregiver burden: a path analysis

Background: Studies reported the relationship between behavioural and psychological symptoms of dementia (BPSD), cognitive function, caregiver burden, and therapeutic effects. However, the causal relationship between BPSD in community-dwelling patients with Alzheimer’s disease (AD) and caregiver burden is yet to be established. This study aimed to classify BPSD in patients with AD and identify the relationship between BPSD and the factors affecting family caregiver burden. Methods: Path analysis was conducted at a neurology outpatient clinic of a tertiary general hospital in South Korea. The medical records of 170 patients, aged ≥50 years, diagnosed with or suspected for AD were retrospectively reviewed. We investigated cognitive function (Korean version of the Mini-Mental-State Exam), dementia stages (Korean version of the Expanded Clinical Dementia Rating scale), depression (Short-form Geriatric Depression Scale-Korea), activities of daily living (ADL; Korean version of the Barthel Activities of Daily Living index), instrumental activities of daily living (IADL; Seoul-Instrumental Activities of Daily Living), and BPSD and caregiver burden (Korean Neuropsychiatric Inventory). Considering the characteristic features of BPSD with various symptoms, BPSD was classified using factor analysis. Factor extraction was performed using principal component analysis, followed by Varimax factor rotation. Results: Mean total BPSD score was 17.66 ± 20.67, and the mean score for family caregiver burden was 9.65 ± 11.12. Symptom cluster-1 (hyperactivity symptoms) included disinhibition, irritability, and agitation/aggression. Symptom cluster-2 (psychosis symptoms) included hallucinations, anxiety, elation/euphoria, delusions, and depression/dysphoria. Symptom cluster-3 (physical behaviour symptoms) included appetite and eating abnormalities, apathy/indifference, aberrant motor behaviour, sleep, and night-time behaviour disturbances. Dementia stages, ADL, and IADL had indirect effects on family caregiver burden through hyperactivity, psychosis, and physical behaviour symptoms, indicating that BPSD exerted a complete mediating effect. Conclusions: Unlike previous studies, we classified BPSD symptoms into similar symptom clusters to evaluate its effect on caregiver burden, rather than collectively investigating the 12 symptoms of BPSD. As the dementia stage worsens, symptom clusters in BPSD serve as a medium between ADL and IADL degradation and for the increase in caregivers’ burden. The development and implementation of therapeutic, nursing interventions, and policies focusing on dementia stages, ADL, and IADL, delaying and preventing BPSD can alleviate family caregivers’ burden.

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Becoming an empowered parent. How do parents successfully take up their role as a collaborative partner in their child's specialist care?

Background: The purpose of this article is to offer an improved understanding of how parents of children with long-term disabilities are empowered to successfully take up their role as decision-making partners in the design and delivery of the care of their child. The intention is to stimulate dialogue, encourage reflection and provide practical suggestions for health professionals working with children and their families. Design: The reported findings are from a study which was guided by a constructivist grounded theory methodology. This involved an iterative process of repeated cycles of data collection and analysis, which comprised 12 semi-structured, in-depth interviews with 14 parents of children accessing paediatric services within a single National Health Service Trust. Results: A novel model, explaining how the power im/balance and the perceived state of the therapeutic relationship influence how successfully a parent takes up their position in the collaborative partnership, is presented and discussed. Conclusion: It is suggested that by thoughtfully addressing the traditional hierarchy that exists within healthcare, health professionals might facilitate the development of a 'truly' therapeutic relationship, which can help promote parental empowerment.

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Becoming a Family Caregiver to a Person With Dementia: A Literature Review on the Needs of Family Caregivers

Introduction: The dementia disease affects both the family caregivers’ health and social and psychological well-being. The aim of this review was to identify and describe the needs of family caregivers living with a person with dementia at home. Method: The literature review, conducted using the matrix method, was also inspired by Thomas and Harden’s thematic synthesis. Results: Three themes were identified: (1) the family caregiver’s new roles and relationships; (2) caregiver burdens; and (3) the caregiver’s need for information and support. Conclusion: When family caregivers gradually lose their reciprocal relationship with the person with dementia, and sometimes also with family and friends, the need for other kinds of social contact arises e.g. with others in a similar situation. They also need to have some respite to provide room to pursue their own interests and take care of their own health. Also, a high level of individually tailored information is needed. 

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Barriers to Family Resilience in Caregivers of People Who Have Schizophrenia

Purpose: To explore the barriers to family resilience in caregivers of people who have schizophrenia. Design: A qualitative descriptive approach was used. Methods: Semistructured interviews were conducted with family caregivers of patients with schizophrenia registered at the psychiatry outpatient unit of a hospital center. Content analysis was performed on audio‐recorded and verbatim‐transcribed interviews. The consolidated criteria for reporting qualitative research (COREQ) checklist was applied to this study. Results: A total of 31 family caregivers participated, the majority of whom were female (71%) with an average age of 57.5 years. Most participants lived with and cared for their relative (90.3%). The caregiver role was assumed mostly by mothers (54.8%) and fathers (22.6%). Barriers to family resilience in caregivers of people experiencing schizophrenia broadly fall under five categories: lack of knowledge about the disease, social stigma, expressed emotion, involvement in the relationship, and blame. Conclusions: In view of the paucity of studies exploring and understanding the barriers to family resilience, this study presents itself as one of the first in this area. There are different barriers to family resilience. This research provides an overview and an understanding of key barriers to family resilience in caregivers of people experiencing schizophrenia. Clinical Relevance: There is a need for nurses to help families to be resilient. By understanding the barriers to resilience, nurses are able to focus on these factors and help families to remove or reduce their influence.

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Balneotherapy with a psychoeducation program for the promotion of a balanced care in family caregivers of older adults

Background: This study aimed to analyze the efficacy of an intervention program for informal caregivers of elderly dependent that combined balneotherapy with group psychoeducation (BT-PE) based on the balanced care model. Method: The BT-PE intervention (N = 124) was compared with a comparison group only exposed to balneotherapy (BT) (N = 76). The two modalities included both primary and secondary informal caregivers. A three-way mixed ANOVA was conducted to determine the effects of two between-subjects´ factors (intervention group and caregiver type) and one within-subjects´ factor (time) on burden, depression, anxiety, maladjustment and care satisfaction. Results: Results showed less burden and more care satisfaction in both primary and secondary caregivers participating in the BT-PE program after the interventions. Primary caregivers also showed lower levels of maladjustment in the experimental group at post-intervention. Although depressive symptoms and anxiety decreased significantly in both intervention groups, BT-PE did not show lower scores compared with the application of sole BT. Conclusion: The relevance of caregivers´ psychoeducation on the balanced care model and its combination with balneotherapy is highlighted. 

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Autism-specific parenting self-efficacy: An examination of the role of parent-reported intervention involvement, satisfaction with intervention-related training, and caregiver burden

Background: Parenting self-efficacy, described as the beliefs parents hold about their ability to successfully parent their children, has been shown to support parent and child well-being. Parents of children with autism spectrum disorder face disproportionately high levels of demand both as caregivers, and as partners in multiple, complex, intervention programs. This study examines the relationship between parents' experiences with their child's interventions—specifically their sense of involvement in treatment and satisfaction with intervention-related training—and their confidence in parenting a child with autism spectrum disorder, defined as autism-specific parenting self-efficacy. Methods: Participants (N = 438, 93% mothers of children with autism spectrum disorder aged 2–17 years) completed our novel autism-specific parenting self-efficacy scale and rated their experience of involvement in their child's interventions and satisfaction with intervention-related training across a range of common autism spectrum disorder–related treatments. Respondents also completed a caregiver burden scale. Results: Findings indicate that parents who report greater involvement in their child's interventions, and note greater satisfaction with intervention-related training, also report greater autism-specific parenting self-efficacy. Parents who report greater financial and social burden report lower autism-specific parenting self-efficacy. Conclusions: We propose that these results are important in creating intervention experiences that foster parental self-efficacy through involvement, productive training experiences, and addressing parental burden.  

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Associations Between Hospice Care and Scary Family Caregiver Experiences

Context: Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations. Objectives: To examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life. Methods: Secondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale. Results: Hospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers. Conclusion: Hospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.

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Association between Living with Patients with Dementia and Family Caregivers’ Depressive Symptoms—Living with Dementia Patients and Family Caregivers’ Depressive Symptoms

Background: Depression among family caregivers is becoming an increasingly important issue due to a growing elderly population. This study aimed to examine the association of living with a patient with dementia and family caregivers’ depressive symptoms, among Korean adults. Methods: This study used the data of 371,287 participants after excluding those who indicated having dementia themselves from the Korea Community Health Survey of 2018–2019. Depressive symptoms were measured using the Patient Health Questionnaire-9. Data were analyzed using multiple logistic regression. Results: The rates of spouse caregivers having depressive symptoms were 9.4% and 10.8% among men and women, respectively. The odds ratio for risk of depressive symptoms among male and female spouse caregivers in comparison to non-caregivers was 2.65 and 2.28, respectively. In the subgroup analysis, the highest income group was associated with risk of depressive symptoms, with an odds ratio of 4.28 for men, and 3.02 for women. Conclusion: Having a patient with dementia in the family was significantly associated with family caregivers’ depressive symptoms. In particular, when the patient with dementia was a spouse, both women and men were likely to have depressive symptoms. To reduce the burden of caregivers, we need management policies and interventions for family caregivers.

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Association between family caregivers and depressive symptoms among community-dwelling older adults in Japan: A cross-sectional study during the COVID-19 pandemic

Objectives: Novel coronavirus disease (COVID-19) pandemic could increase the mental health burden of family caregivers of older adults, but related reports are limited. We examined the association between family caregiving and changes in the depressive symptom status during the pandemic. Methods: This cross-sectional study included 957 (mean age [standard deviation] = 80.8 [4.8] years; 53.5% females) community-dwelling older adults aged ≥ 65 years from a semi-urban area of Japan, who completed a mailed questionnaire. Based on the depressive symptom status assessed with the Two-Question Screen between March and October 2020, participants were classified into four groups: “non-depressive symptoms,” “incidence of depressive symptoms,” “remission from depressive symptoms,” or “persistence of depressive symptoms.” Participants were assessed in October 2020 for the family caregiving status, caregiving role, the severity of care recipients’ needs, and increased caregiver burden during the pandemic, each with the simple question. Multinomial logistic regression analysis was applied to obtain the odds ratios (ORs) and 95% confidence intervals (CIs) for changes in depressive symptom status. Results: Compared to non-caregivers, family caregivers were associated with the incidence (OR [95% CI] = 3.17 [1.55–6.51], p < 0.01) and persistence of depressive symptoms (OR [95% CI] = 2.39 [1.30–4.38], p < 0.01). Primary caregivers, caregivers for individuals with severe care needs, and caregivers with increased burden during the pandemic had a high risk of depressive symptoms. Conclusions: Family caregivers had a high risk of depressive symptoms during the pandemic. Our findings highlight the need for a support system for family caregivers. 

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Assessment of the Psychological Burden among Family Caregivers of People Living with Alzheimer's Disease Using the Zarit Burden Interview

Background: In China, family caregivers play a major role in caring for people living with Alzheimer's disease (PLWAD), but little is known about the burden this creates. Objective: This study aimed to investigate the burden among family caregivers of PLWAD and the factors influenced it. Methods: Family caregivers of PLWAD were recruited from a hospital in China from January 2018 to July 2018. All data were collected online using the Chinese version of the Zarit Burden Interview (ZBI), and the participants' sociodemographic and caregiving details were obtained. T-tests and Kruskal-Wallis H (K) tests were used to compare ZBI scores between groups. Factors related to the caregiver psychological burden were analyzed using multiple linear regression analysis. Results: A total of 300 participants were assessed, of which 213 (71.00%) were female. More than half of the caregivers were the patient's daughter (51.0%, n = 153). The average ZBI score of the caregivers was 43.05 (13.42). The level of burden was influenced by age, the relationship of the caregiver to the patient, the severity of AD, the caregiver's retirement status, the income level of the caregiver, and the caring time. Regression analysis showed that retired caregivers were more likely to have higher levels of burden and that burden increased with AD severity. Conclusion: Most family caregivers of PLWAD have a considerable caregiver psychological burden. The findings increase the understanding of factors that influence family caregiver burden, and pave the way for potential interventions, such as social support and caregiver empowerment, to reduce their burden. 

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Assessment of the perceived stress and burden of family caregivers of the head-and-neck cancer patients at a tertiary care cancer center: A cross-sectional study

Introduction: Cancer is a major life-threatening disease and has an impact on both patients and their family members. Caring for cancer patients may lead to several levels of stress which may affect their own health as well as their quality of life. Aim: To assess the perceived stress and burden of family caregivers of head and neck cancer patients (HNC) attending cancer care centre at a tertiary care centre, Tamil Nadu. Objectives: To assess the perceived stress and the burden among caregivers of patients with head and neck cancer using the Perceived Stress Scale (PSS) and Caregiver Strain Index (CSI) respectively. Materials and Method: A Cross-sectional study was carried out for a period of three months among the caregivers of head and neck cancer patients at a cancer care centre, Madurai. A total of 200 caregivers were selected by Convenience sampling method. Data was collected using a pretested, self-structured, closed-ended questionnaire by face to face interview method. Results: The study population consisted of Caregivers aged 21-60 years, mostly females (80%), spouses (54%), employed (57%) and uneducated (66%). Most of the caregivers were from lower socioeconomic status (66%) and those who are providing care for 1 to 6 months were more in number. In this study, 82% of caregivers reported high caregiver burden (CSI ≥7) and 67% of caregivers reported high stress (PSS ≥ 26 - 40). Conclusion: Caregivers are experiencing significant burden, particularly with respect to their physical and psychological well-being, economic circumstances, social and personal relationships.

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Assessment of the burden among family caregivers of patients with Alzheimer’s disease

Introduction: The objective of this study was to examine the caregiving burden and identify the predictors of burden among family caregivers of patients with Alzheimer’s disease. Materials and Method: The sample consisted of 154 family caregivers of community-dwelling Alzheimer patients. Zarit Burden Inventory was used to measure caregiver burden. Depending on the total score, the level of burden is classified as absent to little burden (0 to ≤20), mild to moderate burden (21 to 40), moderate to severe burden (41 to 60), and very severe burden (≥61). The cutoff point for the clinical depression was taken as 24. Results: The caregivers were mainly women (78.6%), the patient’s daughters (56.5%), living with the patient (79.1%), and they were not receiving any support from other family members for patient care (54.5%). The average time spent on caregiving tasks was 4.8 hours a day. The mean Zarit Burden Inventory score was 22.4. The burden scores of 39.6% of the caregivers were significant for clinical depression. The most pronounced predictors of higher burden were the absence of someone supporting the care, social isolation, the length of time spent daily for caregiving, and the patient’s age, comorbidities, and functional impairment in daily activities. Receiving psychological counselling was a protective factor against the development of burden. Conclusion: The results suggest that burden is high among the caregivers of patients with Alzheimer’s disease. Strategies should be developed to support family members in countries such as Turkey, where the care is undertaken by informal caregivers. 

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Assessment of Family Caregivers' Needs: What Employers Need to Know

It remains to be seen whether employers' increased awareness of and support for their employees' caregiving roles during the COVID-19 pandemic will result in permanent changes that better align benefits with employees' needs. Family Caregiver Assessment Assessment of family caregivers' needs and well-being separately from those of the care recipient has long been recommended as an essential component of caregiver support by organizations such as Family Caregiver Alliance and AARP. The better that employers understand what family caregiving entails, based on evidence-based individual caregiver assessment practices, the more likely they can thoughtfully approach an organization-level assessment of their employees' caregiving roles and needs. 

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Assessment of alternative methods for informal caregivers to perform patient repositioning tasks

Background: Manual patient handling tasks put formal and informal caregivers at risk of musculoskeletal injury. Intervention research to reduce risks to informal caregivers is limited. Design: This study examined effects of slide sheet use when individual informal caregivers performed patient boosting and turning tasks. Three methods of slide sheet use and a baseline method (no slide sheet) were compared, to reposition a 70 kg individual. Results: Muscle activity, ground reaction force, posture, and rating of perceived exertion were significantly affected by task method. Erector Spinae activity was reduced in boosting and turning away tasks with the slide sheet. Shoulder elevation, torso angle, and normalized vertical ground reaction force were also reduced with the slide sheet during boosting. The turn towards task was generally not improved with the slide sheet. Conclusion: Overall, using a slide sheet provided biomechanical benefits to individual caregivers performing two common patient handling tasks: boosting and turning patient away from caregiver. 

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Application of the hospital‐family holistic care model in caregivers of patients with permanent enterostomy: A randomized controlled trial

Aims: To evaluate the effectiveness of the hospital‐family holistic care model based on the theory of 'Timing It Right' in caregivers of patients with permanent enterostomy. Design: A prospective randomized controlled trial. Methods: One hundred and twenty‐five caregivers of patients with permanent enterostomy were recruited from 1 May 2017–31 August 2019. They were randomized into either intervention group (N = 62) or control group (N = 63). The control group received routine care and follow‐up, while the intervention group received routine care, follow‐up, and hospital‐family holistic care intervention based on 'Timing It Right'. The care ability, psychological distress, and life quality of the caregivers were evaluated between the groups before the intervention, at discharge, and 3 and 6 months after discharge. Results: One hundred and eleven caregivers completed the study (88.8%). At 3 and 6 months after discharge, the care ability and life quality in the intervention group were significantly better than those in the control group (t = 8.506/9.783, t = 22.652/26.179, p < 0.05) based on the t tests, and the psychological distress was lower than that in the control group. The ostomy adaptability of the control group was significantly lower than that in the intervention group (p < 0.001) based on the t tests, and the χ2 test showed that ostomy complication was more than that in the intervention group (23.81% vs. 12.90% and 34.92% vs. 19.35%; p < 0.05) at 3 and 6 months after discharge. The interaction between time and group showed that the effect of time factor varied with the group and the four evaluation indexes in the intervention group gradually improved with the extension of the observation time and were better than those in the control group based on generalized estimating equation model. Conclusion: The hospital‐family holistic care model based on 'Timing It Right' can effectively improve the care ability of caregivers of patients with permanent enterostomy, reduce psychological distress, and improve the quality of life. Impact: The caregivers of patients with permanent enterostomy showed dynamic changes in their care experience and needs at different stages of the disease. The hospital‐family holistic care intervention strategy based on 'Timing It Right' can effectively improve the caregiver's care ability, alleviate psychological distress, and improve the quality of life. Additionally, improving the patients' stoma adaptability and reducing the incidence of complications related to ostomy.
 

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Anxiety and depression among caregivers of young children with Congenital Zika Syndrome in Brazil

Aims: To examine the psychological well-being of primary caregivers of infants and toddlers with Congenital Zika Syndrome (CZS), and the roles of family resources, parenting stress, and coping strategies in caregivers' adaptation. Methods: Family caregivers (N = 50) of children with CZS who were receiving treatment at a rehabilitation hospital in Recife, Brazil participated a cross-sectional survey study. Caregivers completed measures of anxiety and depression, coping strategies, family resources, and parenting stress. Results: Mild to severe symptoms of depression were identified in 40% of caregivers and were a more prominent concern than symptoms of anxiety. Fewer family resources and high levels of parenting stress were significantly associated with both anxiety and depression. The association between parenting stress and depression was moderated by coping, such that parenting stress was associated with higher caregiver depression at low but not high levels of coping strategy use. Conclusions: Practitioners in Brazil should consider the role of family coping and resources as important resilience promoting factors in the development of new programs designed to promote psychological adaptation in caregivers to children with CZS. It is recommended that caregiver mental health support services be integrated into existing early intervention programs targeting children with CZS. Parents and other primary caregivers are encouraged to take an active role in the care and developmental monitoring of children born with CZS, but their ability to provide care may be compromised by difficulties in psychological adaptation. Moderate and severe symptoms of depression were more prominent in caregivers than moderate and severe symptoms of anxiety (20% versus 6%, respectively). Practitioners should include assessment of coping strategies, parenting stress and family resources conjointly with evaluation of symptoms of depression and anxiety as part of routine CZS family evaluations. A useful approach for caregivers in Brazil may be to more fully integrate caregiver mental health support services into existing early intervention programs for children with CZS.

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Alzheimer’s Disease Caregiver Characteristics and Their Relationship with Anticipatory Grief

Background: In Alzheimer’s disease, two fundamental aspects become important for caregivers: ambiguity and ambivalence. Thus, anticipatory grief is considered an active psychological process that is very different from the mere anticipation of death. The present study aims to determine which characteristics of family caregivers of people with dementia, such as age, gender, educational level, relationship with the person with dementia, years with dementia or years as a caregiver, are related to the presence of anticipatory grief. Methods: A cross-sectional design was employed. The sample consisted of a total of 129 subjects who cared for a family member with dementia. A sociodemographic data sheet and a battery of tests measure the presence of anticipatory grief, caregiver burden and/or psychopathology. Results: The results obtained allowed us to confirm some of the hypotheses regarding the anticipatory grief construct, the importance of the care time factor, in years and per day, as well as the relevance of the previous demographic and psychopathological profile (being female, spouse function and possible depressive symptomatology). Likewise, from the prediction analyzes performed, it seems that these variables can predict anticipatory grief. Conclusion: These results propose interesting opportunities to formulate care proposals to professionals and family caregivers in relation to care tasks and caregiver skills.

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Advance Care Planning in Pediatric Serious Illness: Centering in the Family Experience

The article presents a study which analyzed the effects of advanced care planning interventions like the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) on families' evaluation of their experiences in familial distress and caregiving. FACE-TC is recognized by the National Cancer Institute. Allso cited is the importance of pediatric palliative care in addressing the patients' and families' goals and values during serious illnesses.

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Adapting ENABLE for patients with advanced cancer and their family caregivers in Singapore: a qualitative formative evaluation

Background: ENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse coach-led, early palliative care model for patients with advanced cancer and their family caregivers. Content covered includes problem-solving, advance care planning, symptom management and self-care. The aim was to evaluate the cultural acceptability of ENABLE among patients with advanced cancer and their caregivers in Singapore and identify modifications for an adapted ENABLE-SG model. Methods: Qualitative formative evaluation with a thematic analysis approach in two hospitals in Singapore, involving patients (n = 10), family caregivers (n = 11) and healthcare professionals (n = 10) who care for patients with advanced cancer. Semi-structured interviews were conducted to explore (i) the main needs and challenges facing individuals with advanced cancer and their family caregivers; (ii) patient involvement in healthcare decision making; and (iii) content and delivery of ENABLE. Results: While physical needs were largely well met, participants expressed that psychosocial care was delivered too late in the illness trajectory. Healthcare decision making approaches varied from a patient-centred shared decision-making model to a family-centred model where patients may not know their cancer diagnosis and prognosis. The content was considered to be relevant, comprehensive and practical; financial assistance, adjustment to body image, and evaluation of complementary therapy were also recommended. Face-to-face rather than telephone sessions were preferred to facilitate rapport building. Conclusions: ENABLE was broadly acceptable with some modifications, including adjusting the content to ensure it can be delivered even if the patient is not fully aware of cancer diagnosis and delivering the first session face-to-face with flexibility for subsequent sessions.

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Actor and partner effects of self-rated health on life satisfaction among family caregiver couples

Objectives: This study examined the dyadic effects of self-rated health on the life satisfaction of family caregivers. The effects of the use of long-term care services were also explored to investigate whether support through care services is associated with the life satisfaction of family caregivers. Methods: The data were drawn from the sixth wave (2016) of the Korean Longitudinal Study of Aging. Caregivers who used long-term care services for older family members, and spouses of the caregivers, were identified. A total of 81 married caregiver couples were analyzed using the actor-partner interdependence model. Results: The study showed that better self-rated health of caregivers was associated with higher levels of life satisfaction (B = 8.87, p < 0.001). Better self-rated health of the caregivers was also associated with higher life satisfaction of their spouses (B = 6.01, p < 0.05). In addition, the results suggested that the use of long-term care services for patients was associated with the life satisfaction of both caregivers (B = 14.57, p < 0.01) and their spouses (B = 12.51, p < 0.05). Discussion: Our findings suggested mutual influences among family caregivers on their life satisfaction. In addition, long-term care services for patients may improve the life satisfaction of other family members. More support through long-term care services for people with care needs is required to increase the life satisfaction of family caregivers. The diverse relationships among family caregivers should be taken into consideration when developing policies and interventions.

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Acceptability and feasibility of a Japanese version of STrAtegies for RelaTives (START-J): A manualized coping strategy program for family caregivers of relatives living with dementia

Background: The rising older population in Japan is associated with a rise in cases of dementia. Support for the increased number of family caregivers of people living with dementia is crucial, as caring may negatively affect a family caregiver's health. This study seeks to evaluate the feasibility and applicability of a recently developed Japanese version of START (STrAtegies for RelaTives). START is a psychosocial coping intervention program developed in the United Kingdom that has been shown to improve caregivers' mood and quality of life in a randomized controlled trial. Method: We made changes to START (e.g., idioms, linguistic nuance, and providing care insurance information suited for Japan) to make it culturally appropriate. Fourteen Japanese female family caregivers of relatives with mild dementia (n = 10) or mild cognitive impairment (n = 4) were referred to the study, but six were excluded owing to illness and busyness. This single-arm study had a before–after trial evaluating psychological outcomes including depression, anxiety, quality of life, and subjective care burden. Results: The acceptance retention and satisfaction rate suggest the feasibility and acceptability of the START program; 8/14 (>55%) eligible, prospective participants consented and were included in this study, all (8/8) of whom completed all START sessions. The mean program satisfaction score was 30.25 (standard deviation = 2.25) out of a potential 32. Conclusion: The results suggest that it is feasible and acceptable to deliver START in Japanese and based on the results of analysis using a linear mixed model, there is initial indication that the intervention improved family caregivers' quality of life, depressive symptoms, and care burden.

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Accentuate the Positive: The Association Between Informal and Formal Supports and Caregiving Gains

Background: To promote resilience among caregivers for persons living with dementia (PLWDs), we examine how formal and informal supports are linked to caregiving gains, and whether gender moderates the association between supports and gains. Method: Using the National Health and Aging Trends Study and associated National Study of Caregiving, sources of informal (emotional support, practical support, and help with the PLWD) and formal support (respite care, training program, support group) are considered as predictors of caregiving gains, with gender as a moderator of these associations. The sample included 707 caregivers for 502 PLWDs. Results: Greater caregiving gains were significantly associated with emotional support from friends/family (β = 0.14, SE = 0.09, p =.03). Furthermore, attending a caregiver training program was only associated with increased caregiving gains among men (β = 0.11, SE = 0.08, p =.02). Conclusion: Emotional support from family/friends appears particularly consequential for caregiving gains, and male caregivers may benefit most from programs that emphasize skill building.

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Care for carers: A concept analysis of support for carers of ill relatives

The aim of the study is to clarify the concept "care for carers," and enhance our understanding of caring for carers of ill relatives. Healthcare professionals often refer to "care for carers" when discussing methods to support the carers of ill family relatives. These carers do not always receive the support they need. A literature search of electronic databases and search engines, using the keywords carer, caregiver, caring for the carer, caring for the caregiver was done. Peer-reviewed research articles published between 2014 and 2019 and written in the English language were analyzed. Following retrieval, research articles were analyzed to describe the uses, attributes, antecedents, consequences, and empirical referents of the concept "care for carers." Research articles describing borderline, related, contrary, and illegitimate examples were included. "Care for carers" addresses the unique support needs of those taking care of ill family members. Carers may derive a sense of empowerment from receiving individualized and proactively rendered support. Carers should be supported to develop control over their circumstances, to find meaning in their caring, to become resilient when experiencing challenges, and to confirm their identity as carers of their ill relatives. 

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Involvement of informal carers in discharge planning and transition between hospital and community mental health care: A systematic review

What Is Known on the Subject: Family members and friends (informal carers) are very important for providing support to people with mental health difficulties. When these carers are included to care planning patients seem to benefit, as they are less likely to relapse.; What the Paper Adds to Existing Knowledge: There are three types of interventions including carers in the patients'transition 1) programmes that offer education in hospital; 2) programmes that involve carers in planning the patients discharge; and 3) programmes that involve carers in hospital care, discharge planning and also follow-up in the community. Interventions including carers that take place both in the hospital and the community have the clearest evidence for benefit on relapse reduction.; What Are the Implications for Practice: Comprehensive interventions have the best evidence for effectiveness but challenges in their implementation and resourcing should be considered. It might worth trying to identify and test simpler interventions focusing on discharge planning that can be used in busy services and require more limited resources whilst providing opportunities for the participation of carers.;

Abstract: INTRODUCTION: Involving informal carers (family and friends of patients) in mental health interventions can lead to positive clinical and psychosocial outcomes such as relapse prevention or treatment adherence.; Aim/question: To explore the evidence on the effectiveness of different models that involve carers in the transition between hospital and community mental health care.; Methods: Five electronic databases (PsycINFO, CINAHL, MEDLINE, Embase and Scopus) and Grey literature (Open Grey and Grey Literature report) were systematically searched. The results were analysed using a narrative synthesis.; Results: Fourteen papers were identified. They described twelve interventions that were categorized into three groups: 1) purely educational programmes in preparation of discharge; 2) programmes that involved carers in planning the transition from the mental health inpatient treatment to community mental health services; and 3) programmes that bridged into the aftercare involving carers in community follow-up. The most comprehensive interventions, i.e. those including psychoeducation, care planning and aftercare follow-up were better evaluated and showed a clearer benefit in improving long-term outcomes and, in particular, reduce re-hospitalization.; Implications for Practice: Comprehensive interventions showed the clearest benefit in improving long-term clinical outcomes of patients. Future research should explore implementation, costs and cost-effectiveness, as comprehensive interventions delivered across different settings are likely to require wide-ranging organizational changes and significant resources. 

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Journal of Advanced Nursing

Aim To assess the effects of family nursing conversations on family caregiver burden, patients' quality of life, family functioning and the amount of professional home health care. Design A controlled before-and-after design. Methods Intervention group families participated in two family nursing conversations incorporated in home health care; control group families received usual home health care. Patients and family members completed a set of questionnaires on entering the study and 6 months later to assess family caregiver burden, family functioning and patients' quality of life. The amount of home health care was extracted from patient files. Data were collected between January 2018-June 2019. Results Data of 51 patients (mean age 80; 47% male) and 61 family members (mean age 67; 38% male) were included in the results. Family caregiver burden remained stable in the intervention group whereas it increased in the control group. Family functioning improved significantly compared with the control group for patients and family members in the intervention group. No significant effects on patients' quality of life emerged. The amount of professional home health care decreased significantly in the intervention group whereas it remained equal in the control group. Conclusion Family nursing conversations prevented family caregiver burden, improved family functioning, but did not affect patients' quality of life. In addition, the amount of home health care decreased following the family nursing conversations. Impact Countries with ageing populations seek to reduce professional and residential care and therefore encourage family caregiving. Intensive family caregiving, however, places families at risk for caregiver burden which may lead to increased professional care and admission into residential care. This study demonstrates that family nursing conversations help nurses to prevent family caregiver burden and improve family functioning while decreasing the amount of home health care.

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Walking the Walk: support for carers with a loved one at the end of life

When a carer’s loved one is at the end of life, the carer’s needs can often be overlooked despite this being a distressing time. Walking the Walk is an initiative first developed to learn how to better meet the needs of carers in the acute hospital setting; this article describes a pilot adapting it for use in care homes, GP practices and community hospitals. The project has received overwhelmingly positive evaluation responses, with participants reporting a renewed motivation to better support and cater to the needs of carers.

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Effective interventions for depressive symptoms among caregivers of people with dementia: A systematic review and meta-analysis

Background Caring for a family member with dementia puts caregivers at risk for depressive symptoms. Yet, interventions with promising effects on caregiver depressive symptoms are not well documented. Aims This review aimed to examine the quality and effectiveness of interventions to reduce depressive symptoms reported by caregivers of people with dementia. Design A systematic review and meta-analysis of nonpharmacological intervention trials was conducted. Methods The electronic databases searched included MEDLINE, CINAHL, and PsycINFO to find randomized controlled trials published between 2007 and 2017. A total of 31 randomized controlled trials were included in the meta-analysis. Results Cognitive-behavioral therapy (838 participants) showed a large, significant effect (standardized mean difference = -0.905; 95% CI = (-1.622, -0.187); p = 0.013) and mindfulness interventions (186 participants) showed moderate, significant effects (standardized mean difference = -0.578; 95% CI = (-0.881, -0.275); p < 0.001) on decreasing caregiver depressive symptoms, while psychoeducational interventions demonstrated small but significant effects (standardized mean difference = -0.244; 95% CI = (-0.395, -0.092); p = 0.002). Emotional support, cognitive rehabilitation, and multicomponent interventions showed less than small or nonsignificant effects related to depressive symptoms among caregivers. Conclusion Cognitive-behavioral therapy interventions, which focus on diminishing negative thoughts and increasing positive activities, can effectively decrease depressive symptoms for caregivers of individuals with dementia. Future research is recommended to assess the long-term effectiveness of cognitive-behavioral therapy in this population.

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The Use of Modified Mindfulness-Based Stress Reduction and Mindfulness-Based Cognitive Therapy Program for Family Caregivers of People Living with Dementia: A Feasibility Study

Purpose: The aim of this study was to investigate the feasibility and preliminary efficacy of a modified mindfulness-based stress reduction (MBSR) program and mindfulness-based cognitive therapy (MBCT) program for reducing the stress, depressive symptoms, and subjective burden of family caregivers of people with dementia (PWD). Methods: A prospective, parallel-group, randomized controlled trial design was adopted. Fifty-seven participants were recruited from the community and randomized into either the modified MBSR group (n = 27) or modified MBCT group (n = 26), receiving seven face-to-face intervention sessions for more than 16 weeks. Various psychological outcomes were measured at baseline (T0), immediately after intervention (T1), and at the 3-month follow-up (T2). Results: Both interventions were found to be feasible in view of the high attendance (more than 70.0%) and low attrition (3.8%) rates. The mixed analysis of variance (ANOVA) results showed positive within-group effects on perceived stress (p =.030, Cohen's d = 0.54), depressive symptoms (p =.002, Cohen's d = 0.77), and subjective caregiver burden (p <.001, Cohen's d = 1.12) in both interventions across the time points, whereas the modified MBCT had a larger effect on stress reduction, compared with the modified MBSR (p =.019). Conclusion: Both the modified MBSR and MBCT are acceptable to family caregivers of PWD. Their preliminary effects were improvements in stress, depressive symptoms, and subjective burden. The modified MBCT may be more suitable for caregivers of PWD than the MBSR. A future clinical trial is needed to confirm their effectiveness in improving the psychological well-being of caregivers of PWD. 

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To improve the communication between a community mental health team and its service users, their families and carers

This article describes the application of quality improvement (QI) to solve a long-standing, ongoing problem where service users or their carers felt they were not given enough information regarding diagnosis and medication during clinic assessments in a community mental health setting. Service users and carers had shared feedback that some of the information documented on clinic letters was not accurate and the service users were not given the opportunity to discuss these letters with the clinician. The aim of this QI project was to improve the communication between the community mental health team (CMHT) and service users and their carers. Wardown CMHT volunteered to take on this project. The stakeholders involved were the team manager and deputy manager, the team consultant, the team specialist registrar, team administrative manager, two carers and one service user. The project had access to QI learning and support through East London NHS Foundation Trust's QI programme. The team organised weekly meetings to brainstorm ideas, plan tests of change to review progress and to agree on the next course of action. The outcome was an increase in service user satisfaction from 59.9% to 78% over a period of 6 months, and a reduction in complaints to zero. 

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Telebehavioral Interventions for Family Caregivers of Individuals With Traumatic Brain Injury: A Systematic Review

Objective: To identify and examine research on telebehavioral interventions that support family caregivers of individuals with traumatic brain injury (TBI). Methods: A systematic review using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Studies published between 1999 and 2019 were identified through CINHAL, EMBASE, ERIC, PsycINFO, PubMed, Scopus, and Web of Science. Results: Twelve studies met inclusion criteria; 3 used quasi-experimental designs, 7 were randomized controlled trials (RCTs) with 1-group comparison, 1 was RCT with a 2-group comparison, and 1 was RCT with a 3-group comparison. Outcomes primarily focused on caregiver depression, distress, self-efficacy, anxiety, stress, burden, and problem solving. Eleven studies found significant differences between the intervention and control groups on at least 1 outcome indicator, and 10 of these reported effect sizes supporting clinical significance. However, studies lacked data on caregiver and injury characteristics, and most studies lacked diverse study samples that may contribute to psychosocial outcomes. Nearly all studies demonstrated methodological bias (PEDro-P M = 5.5). Conclusions: Caregiver psychosocial outcomes following telebehavioral interventions were generally positive, but caution should be used when generalizing outcomes due to lack of sample diversity. Additional research is needed to assess how caregiver demographics and injury severity moderate caregiver outcomes.

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A tale of two springs

Palliative care, which is more than just terminal care, is still unknown in most parts of India. This narrative highlights how early integration of palliative medicine can help the patient and their family to make the most of their time together. Besides, excellent clinical acumen is required while looking after the sickest and the most critical patients, proper communication skills, and an ethical and holistic approach enables a good doctor-patient relationship. Good pain relief, symptom control, attention to nursing issues, providing information sensitively to empower patients and families for joint decision making, and advance care planning can help bring about a decent death and bereavement. Healing is brought about not only for the caregivers but also for the healthcare professionals.

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A systematic review of the provision and efficacy of patient and carer information and support (PCIS) interventions for patients with dementia and their informal carers

Background: The NHS dementia strategy identifies patient and carer information and support (PCIS) as a core component of gold-standard dementia care. This is the first systematic review of PCIS, performed to analyse the literature and evidence for these interventions.; Aims: To systematically review literature evaluating the effectiveness of the provision of PCIS for people with dementia and their informal carers, in inpatient and outpatient settings.; Methods: Searches of four online biomedical databases, accessed in September 2018. Studies were selected if they were: relating to people with dementia or their informal carers, based in inpatient or outpatient settings, published in English-language peer-reviewed journals no earlier than the year 2000 and assessed dementia-related information or social support interventions, by measuring qualitative or quantitative carer or patient-reported outcomes. Standardised data extraction and quality appraisal forms were used.; Results: 7 of 43 full-text papers analysed were eligible for analysis. 3 papers were different arms of one original study. Trends were present in the quantitative results towards reduced patient and carer depression and anxiety and the themes in the qualitative analysis were in favour of the intervention.; Conclusions: The studies analysed were too heterogeneous in design, population and outcomes measured to make a conclusive opinion about the efficacy of these interventions. It is surprising that for such a common condition, a gold-standard evidence-based intervention and standardised delivery for provision of PCIS for people living with dementia in the UK does not exist. Further research is therefore vital.

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Sharing is caring: The potential of the sharing economy to support aging in place

This article explores innovative applications of sharing economy services that have the potential to support a population aging in place, especially the "oldest old," aged 85 and older, and their caregivers. A mixed-methods study conducted by the MIT AgeLab examined perceptions of and experiences with sharing economy services, ultimately finding opportunities and barriers to use. Thus, although sharing economy services have potential to support aging in place, to do so successfully will require reconstructing how older adults, family caregivers, aging service professionals, gerontology educators, and gerontology students conceptualize and deliver care to an aging population. We suggest examples for gerontology educators to integrate into their classrooms to further cultivate an appreciation among students of multiple approaches to intervention, including those that leverage sharing economy and technology-enabled platforms to support older adults and their caregivers. 

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A second chance: Experiences and outcomes of people with dementia and their families participating in a dementia reablement program

Rationale: Evidence-based reablement programs for people with dementia and their caregivers are not routinely implemented in practice. These programs have been shown to be effective in delaying functional decline and improving caregiver wellbeing. Yet, little is known about the experiences of those participating in such programs. Aim: To describe experiences and outcomes of participating in a dementia reablement program, the Care of Persons with dementia in their Environments (COPE), in Australia. Methods: Purposeful sampling was used and semi-structured interviews were completed with people with dementia and their caregivers who received the COPE program in two different states in Australia. The interviews explored the participants' experiences with the program as well as how they are managing after program completion. Thematic analysis was used to identify themes from the interviews. A Likert scale was used to rate the value of the program. Results: Ten dyads (person with dementia and/or their caregiver) were interviewed. Participation in the program was rated (mostly) very valuable. The ongoing collaboration between the therapist and caregiver was considered empowering. The program promoted participation in everyday activities for the person with dementia and appeared to give a 'second chance' to remain in their own homes and communities. Conclusion: Participation in reablement programs (such as the COPE program) has the potential to re-engage people with dementia in meaningful roles and activities in their chosen environments. A therapeutic relationship and individualized intervention approaches tailored to the participants' needs and readiness foster positive experiences and confidence. 

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Randomized Controlled Trial of the Caregiver Orientation for Mobilizing Personal Assets and Strengths for Self-Care (COMPASS) for Caregiving Journey: A National Family Caregiver Support Program in a Long-Term Care Insurance System

Objectives: To investigate the effects of a national support program on family caregivers for long-term care (LTC) recipients. Design: A single-blinded randomized controlled trial compared the 8-week Caregiver Orientation for Mobilizing Personal Assets and Strengths for Self-Care (COMPASS) program consisting of 6 individual inhome, 3 group support, and 2 telephone sessions with a multicomponent intervention, and a control group. Setting and Participants: In total, 969 caregivers who were living with LTC recipients assessed as having a high caregiving burden in 12 Korean cities. Measures: The primary outcomes were depression, burden, and stress levels of caregivers, the secondary outcomes were caregiver self-efficacy, positive aspects of caregiving, social support, social activities, and health risk behaviors. These outcomes were measured at baseline and after the 8-week program, analyzed using modified intention-to-treat, per-protocol (PP), and non-PP analyses. Results: The modified intention-to-treat analysis revealed significant improvements in burden (effect size, = 0.010, P =.008), depression (h2p = 0.012, P = .003), and health risk behaviors (h2p = 0.010, P =.012) for the experimental group compared with the control group. However, there were no significant differences between the 2 groups in improving stress (P =.997), social support (P =.234), or social activities (P =.816). The PP analysis indicated that the COMPASS program was successful in increasing positive aspects of caregiving (h2p = 0.013, P =.004) and self-efficacy (h2p = 0.010, P =.032) compared with the control group. Conclusions and Implications: The COMPASS program was effective in family caregivers of LTC recipients in critical aspects of physical and psychological outcomes, especially in demonstrating the important role of participating in group support sessions. It is feasible for the program to become a formal national support program as part of the national insurance system in Republic of Korea. (C) 2020 AMDA - The Society for Post-Acute and Long-Term Care Medicine.

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A Randomised Controlled Trial of a Caregiver-Facilitated Problem-Solving Based Self-Learning Program for Family Carers of People with Early Psychosis

Facilitated self-help and problem-solving strategies can empower and support family carers to cope with caregiving for people with severe mental illnesses. This single-blind multi-site randomised controlled trial examined the effects of a five-month family-facilitated problem-solving based self-learning program (PBSP in addition to usual care), versus a family psychoeducation group program and usual psychiatric care only in recent-onset psychosis, with a six-month follow-up. In each of three study sites (integrated community centres for mental wellness), 114 people with early psychosis (≤5 years illness onset) and their family carers were randomly selected and allocated to one of three study groups ( n = 38). Caregiving burden (primary outcome) and patients' and carers' health conditions were assessed at recruitment, and one-month and six-months post-intervention. Overall, 106 (94.7%) participants completed the assigned intervention and ≥1 post-test. Generalised estimating equations and subsequent contrast tests indicated that the PBSP participants showed significantly greater improvements in carers' burden, caregiving experiences and problem-solving ability, and patients' psychotic symptoms, recovery, and duration of re-hospitalisations over the six-month follow-up, compared with the other two groups (moderate to large effect size, η 2 = 0.12-0.24). Family-assisted problem-solving based self-learning programs were found to be effective to improve both psychotic patients' and their carers' psychosocial health over a medium term, thus reducing patients' risk of relapse.

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Psychoeducational intervention on burden and emotional well-being addressed to informal caregivers of people with dementia

Background In dementia it is necessary that a family member become an informal caregiver. This labour has social, physical and emotional repercussions on the caregiver's health. The objective was to assesses the impact of the INFOSA-DEM intervention on burden and emotional well-being among caregivers of people with dementia, evaluating the effects at 3 and 6 months. Method We adopted an experimental, non-randomised design with an intervention group and a control group. The intervention group received the intervention and the control group received usual care. The study was carried out in the catchment areas of three centres specialising in the care of people with cognitive impairment in the province of Barcelona. Results At 3 months, there was an improvement with respect to burden in the intervention group with a significant worsening (P< 0.012) in the control group. Similarly, a positive effect on emotional well-being was observed in the intervention group compared with a small negative effect among controls. Conclusions Programs addressed to informal caregivers based on psychoeducational and cognitive-behavioural therapies are effective in improving quality of life and emotional well-being, and in reducing burden, with a positive effect on the quality of care provided at home.

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Postdischarge Intervention for Stroke Caregivers: Protocol for a Randomized Controlled Trial

Background: The majority of stroke survivors return to their homes and need assistance from family caregivers to perform activities of daily living. These increased demands coupled with the lack of preparedness for their new roles lead to a high risk for caregivers developing depressive symptoms and other negative outcomes. Follow-up home support and problem-solving interventions with caregivers are crucial for maintaining stroke survivors in their homes. Problem-solving interventions are effective but are underused in practice because they require large amounts of staff time to implement and are difficult for caregivers logistically.; Objective: The aim of this study is to test a problem-solving intervention for stroke caregivers that can be delivered over the telephone during the patient's transitional care period (time when the stroke survivor is discharged to home) followed by 8 asynchronous online sessions.; Methods: The design is a two-arm parallel randomized clinical trial with repeated measures. We will enroll 240 caregivers from eight Veterans Affairs (VA) medical centers. Participants randomized into the intervention arm receive a modified problem-solving intervention that uses telephone and web-based support and training with interactive modules, fact sheets, and tools on the previously developed and nationally available Resources and Education for Stroke Caregivers' Understanding and Empowerment Caregiver website. In the usual care group, no changes are made in the information, discharge planning, or care the patients who have had a stroke normally receive, and caregivers have access to existing VA resources (eg, caregiver support line, self-help materials). The primary outcome is a change in caregiver depressive symptoms at 11 and 19 weeks after baseline data collection. Secondary outcomes include changes in stroke caregivers' burden, knowledge, positive aspects of caregiving, self-efficacy, perceived stress, health-related quality of life, and satisfaction with care and changes in stroke survivors' functional abilities and health care use. The team will also determine the budgetary impact, facilitators, barriers, and best practices for implementing the intervention. Throughout all phases of the study, we will collaborate with members of an advisory panel.; Results: Study enrollment began in June 2015 and is ongoing. The first results are expected to be submitted for publication in 2021.; Conclusions: This is the first known study to test a transitional care and messaging center intervention combined with technology to decrease caregiver depressive symptoms and to improve the recovery of stroke survivors. If successful, findings will support an evidence-based model that can be transported into clinical practice to improve the quality of caregiving post stroke.; Trial Registration: ClinicalTrials.gov NCT01600131; https://www.clinicaltrials.gov/ct2/show/NCT01600131.; International Registered Report Identifier (irrid): DERR1-10.2196/21799. 

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Care, Dignity and Respect - The Aged Care Royal Commission Final Report

The Final Report of the Royal Commission into Aged Care Quality and Safety was tabled in Parliament on 1 March 2021. In their Report, titled Care, Dignity and Respect, Royal Commissioners Tony Pagone QC and Lynelle Briggs AO call for fundamental reform of the aged care system.  The report is issued in 5 volumes.

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Patient and caregiver outcomes at the integrated memory care clinic

• Caregivers' distress relative to their persons' delusions decreased significantly. • Caregivers' distress relative to their persons' anxiety decreased significantly. • Severity of persons' living with dementia delusions decreased significantly. • Severity of persons' living with dementia depression decreased significantly. • Total symptom severity for persons living with dementia decreased significantly.

The purpose of this longitudinal cohort study was to explore the outcomes of persons living with dementia (PLWD) and their caregivers during their first 9 months at the Integrated Memory Care Clinic (IMCC). IMCC advanced practice registered nurses provide dementia care and primary care simultaneously and continuously to PLWD until institutionalization. Changes were examined in caregivers' psychological well-being (perceived stress, depressive symptoms, caregiver burden, and anxiety) and health status and in PLWDs' quality of life and neuropsychiatric symptoms. Data were collected at baseline, then 3 and 6 months post-baseline. Forty-two caregivers completed all 3 assessments. Most variables remained unchanged. Statistically significant improvements in 5 sub-scales of the Neuropsychiatric Inventory were observed: caregivers' distress regarding their PLWDs' delusions and anxiety, and PLWDs' severity of delusions, depression, and total symptom severity. Further testing of the IMCC is required, including in quasi-experimental studies, to determine its efficacy.

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Online resources for family caregivers of cognitively competent patients: A review of user-driven reputable health website content on caregiver communication with health professionals

Objective: Most patients want their family involved in consultations and decisions, however some family caregivers report feeling overwhelmed and unsure of their role. As caregivers are increasingly looking to medical websites for guidance, this study aimed to review reputable web-resources available to inform family caregivers on how to be involved in medical consultations and decisions. Methods: Google searches were performed using lay search strings, to imitate how a cancer caregiver may locate information. Relevant webpages were included if they were directed at caregivers and from a reputable health organisation. Qualitative content analyses were performed on the included webpages. Results: 22 webpages were included and 8 were directed at caregivers of cancer patients. Six key categories of information were identified: preparing for consultations, helping during consultations, advocating for the patient, decision-making, communicating in hospital settings, and communicating with family and friends. Conclusion: A range of online resources were found to guide family caregivers, particularly cancer caregivers, on involvement in consultations. However, few provided information to caregivers on complex situations such as treatment decision-making, advocating for patient's needs, and communicating in a hospital setting. Practice Implications: Clinicians can actively refer family caregivers to online resources that support caregiver communication in medical settings. 

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Nonpharmacological Forms of Therapy to Reduce the Burden on Caregivers of Patients with Dementia-A Pilot Intervention Study

The aim of this pilot intervention study was to assess the effectiveness of selected forms of therapy (massage and relaxation) in reducing the perceived burden and improving the emotional status of caregivers of people with dementia and to determine which form of physical intervention is most effective. The study group was made up of 45 informal caregivers, who were divided into three subgroups (the massage group, relaxation group and control group). The Caregiver Burden Scale (CBS), Beck Depression Inventory (BDI), Berlin Social Support Scale (BSSS) and the Satisfaction with Life Scale (SWLS) were used. In the study group of caregivers, an average level of perceived burden, satisfactory life satisfaction and moderate severity of depressive symptoms were found. Massage led to a reduction in perceived burden and an improvement in mood and well-being of the examined group of caregivers. Group relaxation activities had no effect on the level of burden experienced by the caregivers, but significantly improved their mood. Both massage and relaxation were equally effective in improving the well-being of caregivers. Due to the lower cost of group activities, relaxation activities seem to be more effective and easier to organize, but further studies are necessary.

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The necessity for sustainable intervention effects: lessons-learned from an experience sampling intervention for spousal carers of people with dementia

Caring for a person with dementia can be challenging over the years. To support family carers throughout their entire caregiving career, interventions with a sustained effectivity are needed. A novel 6-week mobile health (mHealth) intervention using the experience sampling method (ESM) showed positive effects on carers' well-being over a period of 2 months after the intervention. In this study, the effects after 6 months of the selfsame intervention were examined to evaluate the sustainability of positive intervention effects. The 6-week mHealth intervention consisted of an experimental group (ESM self-monitoring and personalized feedback), a pseudo-experimental group (ESM self-monitoring without feedback), and a control group (providing regular care without ESM self-monitoring or feedback). Carers' sense of competence, mastery, and psychological complaints (depression, anxiety and perceived stress) were evaluated pre- and post-intervention as well as at two follow-up time points. The present study focuses on the 6-month follow-up data (n = 50). Positive intervention effects on sense of competence, perceived stress, and depressive symptoms were not sustained over 6-month follow-up. The benefits of this mHealth intervention for carers of people living with dementia were not sustained over a long time. Similarly, other psychosocial interventions for carers of people with dementia rarely reported long-lasting effects. In order to sustainably contribute to carers' well-being, researchers and clinicians should continuously ensure flexible adjustment of the intervention and consider additional features such as ad-hoc counseling options and booster sessions. In this regard, mHealth interventions can offer ideally suited and unique opportunities.

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Managing Home Infusion Therapy

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

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Intervention to improve quality of sleep of palliative patient carers in the community: protocol for a multicentre randomised controlled trial

Background: Sleep disorders are commonly experienced by community caregivers for persons with cancer, with at least 72% reporting moderate to severe disorders. A consequence of this condition, which is associated with the presence of overload in the caregiver, is the increased risk of clinical depression. The aim of this study is to evaluate the effects of music on the sleep quality achieved by informal caregivers for cancer patients receiving home palliative care. In addition, we will assess the influence of specific variables that could modify these effects, analyse the correlates related to nocturnal wakefulness and consider the diurnal consequences according to the sleep characteristics identified. Methods: This single-blind, multicentre, randomised clinical trial will focus on informal providers of care for cancer patients. Two samples of 40 caregivers will be recruited. The first, intervention, group will receive seven music-based sessions. The control group will be masked with seven sessions of therapeutic education (reinforcing previous sessions). Outcomes will be evaluated using the Pittsburgh Sleep Quality Index, a triaxial accelerometer, EuroQol-5D-5L, the Caregiver Strain Index, the Epworth Sleepiness Scale and the Client Satisfaction Questionnaire. The caregivers' satisfaction with the intervention performed will also be examined. Discussion: This study is expected to extend our understanding of the efficacy of music therapy in enhancing the sleep quality of caregivers for patients receiving home palliative care. To our knowledge, no reliable scientific investigations of this subject have previously been undertaken. Music is believed to benefit certain aspects of sleep, but this has yet to be proven and, according to a Cochrane review, high-quality research in this field is necessary. One of the main strengths of our study, which heightens the quality of the randomised clinical trial design, is the objective assessment of physical activity by accelerometry and the use of both objective and subjective measures of sleep in caregivers. Music therapy for the caregivers addressed in this study is complementary, readily applicable, provokes no harmful side effects and may produce significant benefits.

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An integrative systematic review of creative arts interventions for older informal caregivers of people with neurological conditions

Objective We aimed to assess and synthesise the current state of quantitative and qualitative research concerning creative arts interventions for older informal caregivers of people with neurological conditions. Methods A systematic search was employed to identify studies that examined creative arts interventions for older informal caregivers, which were synthesised in this integrative review. We searched the following databases: MEDLINE, PubMed, EBSCO, CINAHL, EMBASE, PsycINFO, Cochrane Library, Scopus, Web of Science, and Google Scholar. We also backwards searched references of all relevant studies and inspected trials registers. Results Of the 516 studies identified, 17 were included: one was quantitative, nine were qualitative and seven used mixed methods. All included quantitative studies were pilot or feasibility studies employing pre- and post-test design with small sample sizes. Studies varied in relation to the type of creative intervention and evaluation methods, which precluded meta-analysis. Large effect sizes were detected in wellbeing measures following singing and art interventions. The qualitative synthesis highlighted that interventions created space for caregivers to make sense of, accept and adapt to their identity as a caregiver. Personal developments, such as learning new skills, were viewed positively by caregivers as well as welcoming the opportunity to gain cognitive and behavioural skills, and having opportunities to unload emotions in a safe space were important to caregivers. Group creative interventions were particularly helpful in creating social connections with their care-recipients and other caregivers. Conclusions The current review revealed all creative interventions focused on caregivers of people living with dementia; subsequently, this identified gaps in the evidence of creative interventions for informal caregivers of other neurological conditions. There are encouraging preliminary data on music and art interventions, however, little data exists on other art forms, e.g., drama, dance. Creative interventions may appeal to many caregivers, offering a range of psycho-social benefits. The findings of the current review open the way for future research to develop appropriate and creative arts programmes and to test their efficacy with robust tools.

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How Effective Are Dementia Caregiver Interventions? An Updated Comprehensive Meta-Analysis

Background and Objectives: Caring for a person with dementia places a significant burden upon informal caregivers and leads to decreased psychological and physical health, which is why dementia caregiver interventions have been developed. However, empirical evidence for the efficacy of those interventions is inconclusive and the last comprehensive meta-analysis (Pinquart & Sorensen. Helping caregivers of persons with dementia: Which interventions work and how large are their effects? International Psychogeriatrics. 2006;18(4), 577-595.) was published more than 10 years ago. Research Design and Method: This meta-analysis aims to update the meta-analysis conducted by Pinquart and Sorensen. Based on a systematic search in electronic data bases, effects of 282 controlled studies were integrated. The effectiveness of different intervention types and influences of study characteristics were evaluated. Results: Interventions had, on average, a significant, small-to-moderate effect on the improvement of ability/knowledge, subjective well-being, burden, depression, and the caregiver's anxiety as well as symptoms of the care recipient. No mean effect was found in regard to reducing the risk of institutionalization. Most intervention types had an effect on the reduction of burden as well as on other outcomes. Psychoeducation and multicomponent interventions affected most outcomes, whereas the efficacy of other intervention types was domain-specific. Discussion and Implications: There is evidence for the efficacy of dementia caregiver interventions, though due to having predominantly small effect sizes, there is still room for improvement. Interventions should be tailored to the desired outcome. More research on long-term effects, effects on anxiety and institutionalization, efficacy of respite and support interventions, care recipient training, and the intervention process is needed.

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Home Oxygen Therapy

This article is part of a series, Supporting Family Caregivers:No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home. Nurses should read the articles first, so they understand how best to help family caregivers. Then they can refer caregivers to the informational tear sheet-Information for Family Caregivers-and instructional videos, encouraging them to ask questions. For additional information, see Resources for Nurses.

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Group cognitive behavioural therapy for family caregivers of people with dementia: A single-arm pilot study

No abstract. Discusses a  trial in Japan to demonstrate feasibility and efficacy of a multi‐component intervention for caregivers of people with dementia comprising CBT and positive psychology.

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Feasibility and Efficacy of a Resiliency Intervention for the Prevention of Chronic Emotional Distress Among Survivor-Caregiver Dyads Admitted to the Neuroscience Intensive Care Unit A Randomized Clinical Trial

IMPORTANCE To our knowledge, there are no evidence-based interventions to prevent chronic emotional distress (ie, depression, anxiety, and posttraumatic stress [PTS]) in critical care survivors and their informal caregivers. OBJECTIVE To determine the feasibility and preliminary effect of the novel dyadic resiliency intervention Recovering Together (RT) on reducing symptoms of depression, anxiety, and PTS among hospitalized patients and their informal caregivers. DESIGN, SETTING, AND PARTICIPANTS This single-blind, pilot randomized clinical trial of RT vs an educational control was conducted among 58 dyads in which either the survivor or caregiver endorsed clinically significant symptoms of depression, anxiety, or PTS. The study was conducted in the neuroscience intensive care unit at Massachusetts General Hospital. Data were collected from September 2019 to March 2020. INTERVENTIONS Both RT and control programs had 6 sessions (2 at bedside and 4 via live video after discharge), and both survivor and caregiver participated together. MAIN OUTCOMES AND MEASURES The primary outcomes were feasibility of recruitment and intervention delivery, credibility, and satisfaction. The secondary outcomes included depression and anxiety (measured by the Hospital Depression and Anxiety Scale), PTS (measured by the PTSD Checklist-Civilian Version), and intervention targets (ie, mindfulness, measured by the Cognitive and Affective Mindfulness Scale-Revised; coping, measured by the Measure of Current Status-Part A; and dyadic interpersonal interactions, measured by the Dyadic Relationship Scale). Main outcomes and targets were assessed at baseline, 6 weeks, and 12 weeks. RESULTS The 58 dyads were randomized to RT (29 dyads [50.0%]; survivors: mean [SD] age, 49.3 [16.7] years; 9 [31.0%] women; caregivers: mean [SD] age, 52.4 [14.3] years; 22 [75.9%] women) or control (29 dyads [50.0%]; survivors: mean [SD] age, 50.3 [16.4] years; 12 [41.3%] women; caregivers, mean [SD] age, 52.1 [14.9], 17 [58.6%] women). Feasibility (recruitment [76%], randomization [100%], and data collection [83%-100%]), adherence (86%), fidelity (100%; kappa = 0.98), satisfaction (RT: 57 of 58 [98%] with scores >6; control: 58 of 58 [100%] with scores >6), credibility (RT: 47 of 58 [81%] with scores >6; control: 46 of 58 [80%] with scores >6), and expectancy (RT: 49 of 58 [85%] with scores >13.5; 51 of 58 [87%] with scores >13.5) exceeded benchmarks set a priori. Participation in RT was associated with statistically and clinically significant improvement between baseline and postintervention in symptoms of depression (among survivors: -4.0 vs -0.6; difference, -3.4; 95% CI, -5.6 to -1.3; P = .002; among caregivers: -3.8 vs 0.6; difference, -4.5; 95% CI, -6.7 to -2.3; P < .001), anxiety (among survivors: -6.0 vs 0.3; difference, -6.3; 95% CI, -8.8 to -3.8; P < .001; among caregivers: -5.0 vs -0.9; difference, -4.1; 95% CI, -6.7 to -1.5, P = .002), and PTS (among survivors: -11.3 vs 1.0; difference, -12.3; 95% CI, -18.1 to -6.5, P < .001; among caregivers, -11.4 vs 5.0; difference, -16.4, 95% CI, -21.8 to -10.9; P < .001). Improvements sustained through the 12-week follow-up visit. We also observed RT-dependent improvement in dyadic interpersonal interactions for survivors (0.2 vs -0.2; difference, 0.4; 95% CI, 0.0 to 0.8; P = .04). CONCLUSIONS AND RELEVANCE In this pilot randomized clinical trial, RT was feasible and potentially efficacious in preventing chronic emotional distress in dyads of survivors of the neuroscience intensive care unit and their informal caregivers.

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Feasibility and acceptability of cognitive behavioral therapy for insomnia (CBT-I) or acupuncture for insomnia and related distress among cancer caregivers

Objective Insomnia is a common, distressing, and impairing psychological outcome experienced by informal caregivers (ICs) of patients with cancer. Cognitive behavioral therapy for insomnia (CBT-I) and acupuncture both have known benefits for patients with cancer, but such benefits have yet to be evaluated among ICs. The purpose of the present study was to evaluate the feasibility, acceptability and preliminary effects of CBT-I and acupuncture among ICs with moderate or greater levels of insomnia. Method Participants were randomized to eight sessions of CBT-I or ten sessions of acupuncture. Results Results highlighted challenges of identifying interested and eligible ICs and the impact of perception of intervention on retention and likely ultimately outcome. Significance of the results Findings suggest preliminary support for non-pharmacological interventions to treat insomnia in ICs and emphasize the importance of matching treatment modality to the preferences and needs of ICs.

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The effects of the Fordyce's 14 fundamentals for happiness program on happiness and caregiver burden among the family caregivers of patients with epilepsy: A randomized controlled trial

Background: Caregiving to patients with epilepsy (PWE) is often very stressful for family caregivers and puts a heavy caregiver burden (CB) on them. The aim of this study was to evaluate the effects of Fordyce's fourteen Fundamentals for Happiness Program on happiness and CB among the family caregivers of PWE. Methods: This randomized controlled trial was conducted on seventy family caregivers of PWE. Participants were purposively recruited from the Comprehensive Health Center in Shahrekord, Iran, and randomly allocated to either an intervention or a control group. Participants in the control group received conventional health-related educations in four one-hour group sessions, while participants in the intervention group received the Fordyce's fourteen Fundamentals for Happiness Program in eight one-hour group sessions. Happiness and CB in both groups were assessed at three time points, namely before, immediately after, and two months after the intervention. Data were analyzed using the SPSS program (v. 18.0). Findings: There were no significant differences between the control and the intervention groups regarding participants' demographic characteristics and their pretest mean scores of happiness and CB (P > 0.05). The mean scores of happiness and CB in the control group did not significantly change (P > 0.05), while the mean score of happiness significantly increased and the mean score of CB significantly decreased in the intervention group across the three measurement time points (P < 0.05). Consequently, the mean score of happiness in the intervention group was significantly greater than the control group and the mean score of CB in the intervention group was significantly less than the control group at both posttests (P < 0.01). Conclusion: The Fordyce's fourteen Fundamentals for Happiness Program is effective in significantly increasing happiness and reducing CB among the family caregivers of PWE. Healthcare providers and policy makers can use this program to reduce problems among these family caregivers.

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The Young Carers ID Card

Carers Trust Wales, in partnership with local authorities from across Wales, is supporting a new Welsh Government funded ID card scheme to help young carers in Wales to be identified, feel validated, and receive the support they deserve.

There's a helpful video linked to the page.

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Effectiveness of palliative care consultation service on caregiver burden over time between terminally ill cancer and non-cancer family caregivers

Purpose: The responsibility of taking care of terminal patients is accepted as a role of family members in Taiwan. Only a few studies have focused on the effect of palliative care consultation service (PCCS) on caregiver burden between terminal cancer family caregivers (CFCs) and non-cancer family caregivers (NCFCs). Therefore, the purpose of this study is to address the effect of PCCS on caregiver burden between CFC and NCFC over time.; Methods: A prospective longitudinal study was conducted in a medical center in northern Taiwan from July to November 2017. The participants were both terminally ill cancer and non-cancer patients who were prepared to receive PCCS, as well as their family caregivers. Characteristics including family caregivers and terminal patients and Family Caregiver Burden Scale (FCBS) were recorded pre-, 7, and 14 days following PCCS. A generalized estimating equation model was used to analyze the change in the level of family caregiver burden (FCB) between CFC and NCFC.; Results: The study revealed that there were no statistically significant differences in FCB between CFC and NCFC 7 days and 14 days after PCCS (p > 0.05). However, FCB significantly decreased in both CFC and NCFC from pre-PCCS to 14 days after PCCS (β = - 12.67, p = 0.013). PPI of patients was the key predictor of FCB over time following PCCS (β = 1.14, p = 0.013).; Conclusions: This study showed that PCCS can improve FCB in not only CFC but also NCFC. We suggest that PCCS should be used more widely in supporting family caregivers of terminally ill patients to reduce caregiver burden.

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Dyadic Group Exercises for Persons with Memory Deficits and Care Partners: Mixed-Method Findings from the Paired Preventing Loss of Independence through Exercise (PLIÉ) Randomized Trial

Background: Non-pharmacological therapies for persons with dementia (PWD) are needed. Objective: To develop and test the Paired Preventing Loss of Independence through Exercise (PLIÉ) program, an integrative group movement program for PWD and care partners (CPs). Methods: Participants were randomized to immediate or delayed start to Paired PLIÉ in community-based classes (1 hour, 2 days/week, 12 weeks, 3 home visits). Co-primary outcomes included standard measures of cognition, physical function,and quality of life (PWD) and caregiver burden (CPs) assessed by blinded assessors, analyzed using linear mixed models to calculate effect sizes for outcome changes during Paired PLIÉ, controlling for randomization group. Anonymous satisfaction surveys included satisfaction ratings and thematic analysis of open-ended responses. Results: Thirty dyads enrolled, 24 (80%) completed. PWD (mean age 80; 55% female) experienced significant improvement in self-rated quality of life (Effect Size+0.23; p = 0.016) when participating in Paired PLIÉ, while CPs experienced a non-significant increase in burden (-0.23, p = 0.079). Changes in physical and cognitive function in PWD were not significant. All CPs returning the satisfaction survey (n = 20) reported being moderately-to-highly satisfied with the program. Thematic analyses identified physical (e.g., sit-to-stand, more energy), emotional (enjoyment), and social benefits (peer-to-peer interaction) for PWD and CPs; challenges were primarily related to getting to the in-person classes. Conclusion: Paired PLIÉ is a promising integrative group movement program that warrants further study. It is feasible and may improve self-rated quality of life in PWD. Although CPs may experience increased burden due to logistical challenges, most reported high satisfaction and physical, emotional, and social benefits. 

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Creating a Seat at the Table: How Family Meetings Elucidate the Palliative Care Social Work Role

Background: Palliative care social workers (PCSWs) play a crucial role in optimizing communication and family-centered care for seriously ill patients. However, PCSWs often struggle to demonstrate and receive open acknowledgment of their essential skill set within medical teams. Objective: This case discussion focuses on the care of patients and families surrounding family meetings to highlight the crucial role of the PCSW in (1) preparing the family; (2) participating in the provider meeting; (3) participating in the family meeting; and (4) following up after the meeting. The aim is to illuminate how the PCSWs can demonstrate their unique and essential skill set to medical teams and as a means of furthering the work of psychosocial clinicians throughout medical systems. Conclusion: As the medical model continues to shift toward family-centered care, it is crucial for medical teams to optimize their partnership with patients and families. PCSWs can offer a trauma-informed biopsychosocial–spiritual lens that is instructed by continuity of care and exemplary clinical and rapport-building skills. PCSWs can play a critical role in optimizing communication, support, collaboration, and family-centered whole-person care.

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A cluster randomized controlled trial on a multifaceted implementation strategy to promote integrated palliative care in COPD: study protocol of the COMPASSION study

Background: Despite the urgent need for palliative care for patients with advanced chronic obstructive pulmonary disease (COPD), it is not yet daily practice. Important factors influencing the provision of palliative care are adequate communication skills, knowing when to start palliative care and continuity of care. In the COMPASSION study, we address these factors by implementing an integrated palliative care approach for patients with COPD and their informal caregivers. Methods: An integrated palliative care intervention was developed based on existing guidelines, a literature review, and input from patient and professional organizations. To facilitate uptake of the intervention, a multifaceted implementation strategy was developed, comprising a toolbox, (communication) training, collaboration support, action planning and monitoring. Using a hybrid effectiveness-implementation type 2 design, this study aims to simultaneously evaluate the implementation process and effects on patient, informal caregiver and professional outcomes. In a cluster randomized controlled trial, eight hospital regions will be randomized to receive the integrated palliative care approach or to provide care as usual. Eligible patients are identified during hospitalization for an exacerbation using the Propal-COPD tool. The primary outcome is quality of life (FACIT-Pal) at 6 months. Secondary outcome measures include spiritual well-being, anxiety and depression, unplanned healthcare use, informal caregiver burden and healthcare professional's self-efficacy to provide palliative care. The implementation process will be investigated by a comprehensive mixed-methods evaluation assessing the following implementation constructs: context, reach, dose delivered, dose received, fidelity, implementation level, recruitment, maintenance and acceptability. Furthermore, determinants to implementation will be investigated using the Consolidated Framework for Implementation Research. Discussion: The COMPASSION study will broaden knowledge on the effectiveness and process of palliative care integration into COPD-care. Furthermore, it will improve our understanding of which strategies may optimize the implementation of integrated palliative care.

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Challenges and strategies in communication with people with dementia and their informal caregivers in community pharmacies - a narrative approach

Background: People with dementia and their informal caregivers get in touch with the healthcare system predominantly via contacts with primary care providers. Among these, community pharmacists have been denominated as the health professionals most accessible to the public. Communication with and counselling people with dementia and their informal caregivers present particular challenges to pharmacists.; Aim: This study aims to research the challenges faced and strategies used by community pharmacists who deal with people living with dementia and their informal caregivers.; Methods: Within the context of two workshops with 74 participants, 15 small groups were formed, each of which generated and discussed a small story. Fourteen of those narratives were reported, tape recorded and transcribed. In these 14 narratives, community pharmacists reflected on their experiences with people with dementia or their informal caregivers. The narratives were systematically analysed and interpreted.; Findings: Among the main challenges reported by the workshop participants are the difficulty of identifying a person with dementia; the question of what appropriate communication is; the only partially successful networking with doctors, nursing personnel and support institutions; unsuccessful counselling; and the tension between the economic situation and the care for people with dementia and their informal caregivers. In general, strategies for dealing with people with dementia are characterised by uncertainty whereas communication with informal caregivers is well rehearsed and effective.; Conclusions: Community pharmacies require possibilities to retreat for counselling as well as the possibility for pharmacists to take time for people with dementia and their informal caregivers in everyday pharmacy life. Reflective spaces for narrations about difficult situations provide relief for staff in community pharmacies. 

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Canada's health care system needs to care more about caregivers

Tracy et al argue that there is a pressing need for health care to be redesigned to make it less burdensome for those it exists to serve, namely patients and caregivers. Our hospitals need to treat family caregivers as partners in care, not as visitors. And physicians, in collaboration with interprofessional teams, need to identify and engage family caregivers better to foster greater caregiver confidence and capacity.

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Caregiver engagement practices in National Cancer Institute Clinical Oncology Research Program settings: Implications for research to advance the field

Background Supportive care interventions have demonstrated benefits for both informal and/or family cancer caregivers and their patients, but uptake generally is poor. To the authors' knowledge, little is known regarding the availability of supportive care services in community oncology practices, as well as engagement practices to connect caregivers with these services. Methods Questions from the National Cancer Institute Community Oncology Research Program (NCORP)'s 2017 Landscape Survey examined caregiver engagement practices (ie, caregiver identification, needs assessment, and supportive care service availability). Logistic regression was used to assess the relationship between the caregiver engagement outcomes and practice group characteristics. Results A total of 204 practice groups responded to each of the primary outcome questions. Only 40.2% of practice groups endorsed having a process with which to systematically identify and document caregivers, although approximately 76% were routinely using assessment tools to identify caregiver needs and approximately 63.7% had supportive care services available to caregivers. Caregiver identification was more common in sites affiliated with a critical access hospital (odds ratio [OR], 2.44; P = .013), and assessments were less common in safety-net practices (OR, 0.41; P = .013). Supportive care services were more commonly available in the Western region of the United States, in practices with inpatient services (OR, 2.96; P = .012), and in practices affiliated with a critical access hospital (OR, 3.31; P = .010). Conclusions Although many practice groups provide supportive care services, fewer than one-half systematically identify and document informal cancer caregivers. Expanding fundamental engagement practices such as caregiver identification, assessment, and service provision will be critical to support recent calls to improve caregivers' well-being and skills to perform caregiving tasks.

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Can a Couples' Intervention Reduce Unmet Needs and Caregiver Burden After Brain Injury?

Objective: To examine the effectiveness of the Therapeutic Couples Intervention (TCI) on caregiver needs and burden after brain injury. Research Method: Individuals with brain injury and their intimate partners/caregivers (n = 75) participated in a 2-arm, parallel, randomized trial with a waitlist control. The TCI consisted of 5 2-hr sessions, with a sixth optional session for parents. The Family Needs Questionnaire-R (FNQ-R) and the Zarit Burden Interview (ZBI) were secondary outcome measures. Results: After adjusting for baseline characteristics, caregivers in the TCI group demonstrated reduction in unmet needs for 5 of the 6 FNQ-R subscales, whereas those in the waitlist control group did not. ZBI scores improved significantly for TCI caregivers but not for controls. At the 3-month follow-up, benefits were maintained for the 2B1 and 4 of the 6 FNQ-R subscales (Health Information. Emotional Support, Professional Support, and Community Support Network). Conclusions: The present investigation provided evidence that, following brain injury, a structured couples intervention can reduce unmet needs and burden in caregivers. Future multicenter research examining long-term durability of treatment gains and specific characteristics of positive responders is warranted.

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Alzheimer's disease and the challenges of nursing care towards elderly people and their family caregivers

Objective: This study meant to analyze the main challenges and the care provided by nursing teams during the process of caring for elderly people bearing Alzheimer's disease and their family caregivers. Methods: It is an integrative literature review that was performed through article searching in the Scientific Electronic Library Online (SciELO) and the Literatura Latino-americana e do Caribe em Ciencias da Saude (LILACS) [Latin-American and Caribbean Literature in Health Sciences]. There were obtained 783 studies, of which only 13 met the inclusion criteria. Results: Care strategies associated to Alzheimer-related forms of behavior were proposed, namely, forgetfulness, denial of bathing, and the acceptance of the disease by the family. The lack of training and knowledge by sonic nursing professionals was evidenced as a challenging element vis-a-vis the relationship with elderly, people and their family caregivers, Conclusion: It is important that public policies pursue to guarantee caring practices for elderly people bearing Alzheimer's disease, approaching the real needs experienced by such population, as well as family caregivers and health professionals.

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Access and Retention of Informal Dementia Caregivers in Psychosocial Interventions: A Cross-Sectional Study

Underutilization of community care services has been described for informal dementia caregivers. Most research has however examined caregivers' access to home or respite care rather than to services for themselves. The aims of this study are: to describe access and retention of informal dementia caregivers in psychosocial interventions; examine the perceived effects of interventions among users and motives for non-use among non-users; and compare caregivers with and without lifetime access and retention in psychosocial interventions across predisposing, enabling and need variables. A cross-sectional study was conducted with 179 Portuguese caregivers, who replied to a web-based survey. Participants were fairly distributed among those who have never (49.7%) and those who have ever accessed (50.3%) psychosocial interventions. Individual psychological support was the most used intervention (32.2%). Caregivers' age, time elapsed since diagnosis and the relationship with the care receiver were associated with lifetime access to various intervention types. Dropout was above 50% for most intervention types, except for psychoeducation (31.8%). Associations were found between a history of dropout/retention and caregivers' education, perceived mental health, and the number of hours spent caring. Most users of psychoeducational interventions (>80%) appraised it as beneficial to learn about the disease, provide quality care and cope with caregiving. Informational barriers were the most reported by non-users of psychoeducational interventions (45.1%). The findings show that dementia caregivers continue facing barriers to use and keep using community services for themselves. The influence of particular predisposing and need variables on access to psychosocial interventions can vary according to intervention types. 

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Traumatic brain injury patients' family members' evaluations of the social support provided by healthcare professionals in acute care hospitals

Aims and objectives: The study aimed to examine traumatic brain injury (TBI) patient family members' (FMs) experiences of the support they received from healthcare professionals in acute care hospitals. Background: The length of hospitalisation following TBI is constantly decreasing, and patients may return home with several problems. FMs care for the patients at home although they may not be prepared for the patient's medical needs or financial burden of the illness. The burden which some FMs experience can impair patient care and rehabilitation outcomes. Therefore, FMs require support during acute phases of TBI treatment. Design: A structured questionnaire was sent to 216 TBI patients FMs. The response rate was 47% (n = 102). Methods: A structured questionnaire—based on a systematic literature review and a previous questionnaire on TBI patient FMs' perceptions of support—was developed and used in the data collection. The questionnaire included 46 statements and 11 background questions. Data were collected via an electronic questionnaire. The STROBE checklist was followed in reporting the study. Results: A factor analysis identified five factors that describe the guidance of TBI patient FMs: guidance of TBI patients' symptoms and survival; benefits of guidance; needs‐based guidance; guidance for use of services; and guidance methods. Most of the FMs (51%–88%) felt that they had not received enough guidance from healthcare professionals in acute care hospitals across all five aspects of support. Conclusions: The content of guidance should be developed, and healthcare staff should be trained to consider a FM's starting point when providing guidance. A calm environment, proper timing, sufficient information in different forms and professional healthcare staff were found to be key factors to comprehensive guidance. Involving FMs in the discharge process and rehabilitation of their loved ones both supports the abilities of caregivers and promotes the outcome of the patient's rehabilitation. Relevance to clinical practice: This study provides varied information on the need for social support of TBI patients FMs in the early stages of treatment from the FMs' perspective. This research adopted the FM's perspective to identify various areas of social support that need to be developed so that the FMs of TBI patients receive enough support during the early stages of TBI treatment. 

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TALKING TIME: A pilot randomized controlled trial investigating social support for informal caregivers via the telephone

Background: Caring for people with dementia at home requires considerable time, organization and commitment. Therefore, informal caregivers of people with dementia are often overburdened. This study examined the effects of the telephone-based Talking Time intervention, which is an approach used to strengthen the psychological health-related quality of life (HRQoL) and social support of informal caregivers of people with dementia living at home. Methods: This study was a Medical Research Council framework phase two randomized controlled trial. The intervention consisted of a preliminary talk, information booklet, six structured telephone-based support group meetings and a structured written self-evaluation of each support group meeting. The control participants performed their usual individual self-organized care. After completing the data collection, the control group received the Talking Time intervention for fidelity reasons. The primary outcome was the self-rated psychological HRQoL of the informal caregivers, which was measured with the mental component summary of the General Health Survey Questionnaire Short Form 12 (SF-12). Results: Thirty-eight informal caregivers and their relatives were included and allocated to the intervention or control groups (n = 19 each). After 3 months, the Talking Time intervention group demonstrated an increase in the self-rated psychological HRQoL scores, whereas the scores decreased in the control group. However, the standardized effect size of 1.65 (95% Confidence Interval, - 0.44 - 3.75) was not significant. Additionally, the secondary outcomes demonstrated no significant results. The differences between the groups in most outcomes were in the expected direction. No adverse effects were identified due to the intervention. Conclusions: The Talking Time intervention is feasible and shows nonsignificant promising results with regard to the self-rated psychological HRQoL. After further adjustment, the intervention needs to be evaluated in a full trial. Trial Registration: Clinical Trials: NCT02806583 , June 9, 2016 (retrospectively registered).

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A systematic review of psychosocial interventions to improve quality of life of people with cancer and their family caregivers

Aims To review the characteristics and effectiveness of psychosocial interventions on quality of life of adult people with cancer and their family caregivers. Design A systematic review using PRISMA guidelines. Methods Seven databases were searched from 2009–2019 using key terms. Included studies were assessed using the Quality Assessment Tool for Quantitative Studies. Results 1909 studies were retrieved with 12 studies included, involving 3,390 patients/caregivers. Interventions aimed to improve communication, behaviour change and setting short‐term goals. Duration of interventions varied from 4–17 weeks. Highest benefit was gained from telephone interventions. Interventions based on interpersonal counselling appeared more effective than other approaches. Studies predominantly focused on psychological, physical and social domains of quality of life. Spiritual well‐being received relatively little attention. A paradigm shift is needed to develop psychosocial interventions that incorporate spiritual well‐being. More research is needed in developing countries.

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A systematic review of interventions for family caregivers who care for patients with advanced cancer at home

Objective: To examine the characteristics of interventions to support family caregivers of patients with advanced cancer. Methods: Five databases (CINAHL, Medline, PsycINFO, Web of Science, and the Cochrane Library) were searched for English language articles of intervention studies utilizing randomized controlled trials or quasi-experimental designs, reporting caregiver-related outcomes of interventions for family caregivers caring for patients with advanced cancer at home. Results: A total of 11 studies met the inclusion criteria. Based on these studies, the types of interventions were categorized into psychosocial, educational, or both. The characteristics of interventions varied. Most interventions demonstrated statistically significant results of reducing psychological distress and caregiving burden and improving quality of life, self-efficacy, and competence for caregiving. However, there was inconsistency in the use of measures. Conclusions: Most studies showed positive effects of the interventions on caregiver-specific outcomes, yet direct comparisons of the effectiveness were limited. There is a lack of research aimed to support family caregivers' physical health. Practice Implications: Given caregivers' needs to maintain their wellbeing and the positive effects of support for them, research examining long-term efficacy of interventions and measuring objective health outcomes with rigorous quality of studies is still needed for better outcomes for family caregivers of patients with advanced cancer. 

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Supporting In-Home Caregivers in Symptom Assessment of Frail Older Adults with Serious Illness: A Pilot Study (RP411)

Objectives Describe the use of a Symptom Assessment (SA) Toolkit designed to support in-home caregivers of homebound older adults with serious illness. Explore next steps in evaluation and dissemination of the Toolkit. Importance. Many older adults with serious illness who depend on others for care have symptoms that are difficult to manage. Supporting in-home caregivers in symptom assessment (SA) may improve suffering among older adults. Objective(s). To test the feasibility of a SA-Toolkit for caregivers to assess and track older adults' symptoms. Method(s). With multi-stakeholder input, we created a SA-Toolkit consisting of illustrations depicting symptoms, a validated 5-faces severity scale, and an easy-touse tracking system with phone numbers of family/ friends/clinicians to contact if symptoms worsened. We recruited English-speaking patients $65 years old and their caregivers from a home-based geriatrics program in San Francisco. Using validated questionnaires at baseline and 1-week, we assessed patients' symptoms, patients' and clients' self-efficacy with SA (5- point Likert scale), and acceptability (i.e., recommend to others). We used Wilcoxon signed-rank tests. Results. Eleven patient-caregiver dyads participated. Patients were 84.7 years old (SD 5.7), 81.8% women, and 27.3% non-white. From baseline to 1-week, the mean number of symptoms decreased (3.7 (1.5) at baseline to 2.6 (1.8) at follow-up, p¼0.03). Specifically, the number of patients with pain decreased from 63.6% to 36.4%, anxiety 54.6% to 18.2%, depression 45.5% to 27.3%, and loneliness 36.4% to 18.2%. Caregiver self-efficacy increased (4.6 (0.3) to 4.8 (0.3), p¼0.09). Patients found the symptom illustrations easy-to-use (8.7 on 10-point scale), but the faces scale less so (7.3/10) because it provided ''too many choices.'' Caregivers liked the SA-Toolkit because it was ''easy to use''; nearly all (10/11, 90%) would recommend it to others. Suggested improvements included personalizing materials according to patients' symptoms. Conclusion(s). The SA-Toolkit resulted in decreased symptom burden among patients and higher caregiver self-efficacy in symptom assessment. Acceptability of the Toolkit was high among both patients and caregivers. Impact. A SA-Toolkit is feasible and may help reduce suffering in frail, older patients.

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Supporting family carers via the Admiral Nurse Dementia Helpline: reflection on a case study

In the UK, the quality of post-diagnostic care and support for people with dementia and their family carers is variable and depends on the availability of services in each person's local area. This article considers the support services available for families affected by dementia and discusses how telephone helplines can assist those who may have no access to other types of support. It presents a case study describing a call to the Admiral Nurse Dementia Helpline, a service run by nurses with expertise in dementia care and provided by the charity Dementia UK. This is followed by a reflection on the call from the nurse's perspective. The case study-based reflection demonstrates the complexity of providing support through a helpline and the specialist knowledge and skills required to provide the appropriate level of support. 

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Strengthening the educational inclusion of young carers with additional needs: an eco-systemic understanding

This research explores the eco-systemic factors impacting on the educational inclusion of young carers (UK) that defines a young carer as anyone under the age of 18 years old who provides, or intends to provide, care for another person of any age. The literature has indicated that young carers with additional needs are a population more vulnerable to poorer outcomes in educational attainment, employment opportunities, and psychological wellbeing. The current research draws on qualitative research methods to identify the systemic factors that strengthen the educational inclusion of young carers with additional needs. Findings suggest important factors at different systemic levels around the carer, such as the role of the key person within the educational setting, the role of external support and social support in strengthening a young carer's inclusion in their educational setting. The implications for practice are discussed. 

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Service user and carer experiences of the advanced nurse practitioner role in a memory assessment team

Background: Advanced nurse practitioners (ANPs) within memory services can support prompt diagnoses of dementia. Further understanding of the role is necessary as evidence on its effectiveness is limited. Aim: To assess service user and carer satisfaction with the ANP role within Kirklees memory assessment team. Methods: A cross-sectional survey was undertaken to evaluate carer and patient perceptions of the ANP role in a local memory assessment team. The survey was developed using the Royal College of Nursing's four pillars as a structure: clinical/direct care practice, leadership and collaborative practice, improving quality and developing practice, and developing self and others. Results: One hundred and fifteen surveys were sent out, and 85 were completed, a response rate of 73.9%. Patients expressed significant satisfaction with the ANP, in particular in the areas of direct clinical practice (84%) and quality of care received (87%). Conclusion: Patients and families are highly satisfied with the service provided by the ANP. High-quality research is needed on the cost effectiveness and outcomes of ANP interventions. 

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Self‐Administered Acupressure for Caregivers of Older Family Members: A Randomized Controlled Trial

OBJECTIVE To test whether self‐administered acupressure reduces stress and stress‐related symptoms in caregivers of older family members. DESIGN In this randomized, assessor‐blind, controlled trial, 207 participants were randomized (1:1) to an acupressure intervention or a wait‐list control group. SETTING Community centers in Hong Kong, China. PARTICIPANTS Primary caregivers of an older family member who screened positive for caregiver stress with symptoms of fatigue, insomnia, or depression. INTERVENTION The 8‐week intervention comprised four training sessions on self‐administered acupressure, two follow‐up sessions for learning reinforcement, and daily self‐practice of self‐administered acupressure. MEASUREMENTS The primary outcome was caregiver stress (Caregiver Burden Inventory). Secondary outcomes included fatigue (Piper Fatigue Scale), insomnia (Pittsburgh Sleep Quality Index), depression (Patient Health Questionnaire), and health‐related quality of life (QoL) (12‐item Short‐Form Health Survey version 2). An intention‐to‐treat analysis was adopted. RESULTS: Of 207 participants, 201 completed the study. Caregiver stress in the intervention group was significantly lower than that in the control group after 8 weeks (difference = −8.12; 95% confidence interval [CI] = −13.20 to −3.04; P =.002) and at 12‐week follow‐up (difference = −8.52; 95% CI = −13.91 to −3.12; P =.002). The intervention group, relative to the control group, also had significantly improved secondary outcomes of fatigue (difference = −0.84; 95% CI = −1.59 to −0.08; P =.031), insomnia (difference = −1.34; 95% CI = −2.40 to −0.27; P =.014), depression (difference = −1.76; 95% CI = −3.30 to −0.23; P =.025), and physical health‐related QoL (difference = 3.08; 95% CI = 0.28‐5.88; P =.032) after 8 weeks. CONCLUSION: Self‐administered acupressure intervention significantly relieves self‐reported caregiver stress and co‐occurring symptoms in those caring for older family members. Further studies are needed to measure the symptoms objectively and to examine the clinical importance of the observed improvement in caregiver stress. 

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The role and value of family therapy for people living with cancer: a rapid review of recent evidence

Purpose of Review: Cancer impacts the whole family and relational system, not just the individual with the diagnosis. The present article identifies and reviews publications in the field of family therapy and cancer since 2019, to describe the theoretical models and techniques applied, and the outcomes achieved.; Recent Findings: A search of databases and grey literature led to the identification of five articles from four studies. Four papers described primary research and one summarized a case example. Papers were published by teams in the USA, Sweden and Iceland. Each article described the benefits of adopting a family therapy approach on outcomes such as family communication, bereavement and decreased carer burden. Four papers described specialist family therapists delivering the interventions, and one used oncology nurses drawing on the theories and techniques of family therapy.; Summary: The rarity of family therapy publications in the past year reflects the individual-level approach to cancer which permeates both medicine and talking therapies. The utility of family therapy could be further surfaced through more large-scale studies which thoroughly describe the unique theoretical basis and techniques, alongside outcomes for multiple people within the family system.

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Review and Selection of Online Resources for Carers of Frail Adults or Older People in Five European Countries: Mixed-Methods Study

Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage.; Objective: This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden).; Methods: A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions.; Results: From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer's wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare.; Conclusions: The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.

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Psychosocial support interventions for cancer caregivers: reducing caregiver burden

Purpose of Review: Informal caregivers of individuals affected by cancer undertake a range of activities and responsibilities throughout the course of the cancer care trajectory. This role is often undertaken alongside employment and other caring roles and can contribute to caregiver burden, which may be ameliorated through psychosocial intervention.; Recent Findings: Fifteen new studies investigating the potential of psychosocial interventions for reducing caregiver burden were identified from the period January 2019 to February 2020. Studies were mostly quasi-experimental or randomised controlled trials (RCTs). Psychoeducation was the main intervention identified, though content varied, psychoeducation was associated with improvements in burden, quality of life (QoL) domains and psychological symptoms for caregivers. A small number of counselling/therapeutic interventions suggest that caregivers supporting patients with advanced cancer or cancers with high symptom burden may experience reduced psychological symptoms and QoL benefits. There was a paucity of evidence for other psychosocial interventions (e.g. mindfulness, acceptance and commitment therapy) and methodological quality was variable across all intervention types.; Summary: Psychosocial interventions may help to reduce burden for informal caregivers of individuals affected by cancer, though there remains a need for rigorously designed, multicentred RCTs and to examine the long-term impact of psychosocial interventions for caregivers.

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Psychosocial resources developed and trialled for Indigenous people with autism spectrum disorder and their caregivers: a systematic review and catalogue

Background: People with autism spectrum disorder (ASD) face many psychosocial challenges throughout life, highlighting the need for programs and resources promoting psychosocial wellbeing. Indigenous peoples with ASD and/or other neurodevelopmental disorders must overcome cultural and social barriers to access such supports. This study aimed to identify psychosocial programs and resources developed world-wide for this population by systematically reviewing research evaluating programs aiming to promote the psychosocial wellbeing of this population and/or their caregivers; and collating and reviewing resources developed to promote their psychosocial wellbeing. Methods: Searches were last conducted in December 2019. The systematic review searched 28 electronic databases, and 25 electronic databases were searched for resources promoting psychosocial wellbeing. Additional published and unpublished studies were identified from relevant reviews, authors of eligible articles, and experts working in Indigenous Health. Articles and resources were screened for inclusion using pre-defined criteria. Articles included in the systematic review were assessed for quality using the Mixed Methods Assessment Tool. The diversity and paucity of outcomes reported precluded pooling of study findings for meta-analysis. Results: Seven articles situated in the USA (2), Canada (3) and Australia (2); and eleven resources developed in Australia (9), Canada (1) and New Zealand (1) met inclusion criteria. All articles showed some promising findings for improving psychosocial wellbeing for Indigenous children with ASD and/or another neurodevelopmental disorder, and 5 of 7 evaluated the cultural adaptation of an existing evidence-based program for an Indigenous population. However, methodological quality was moderate or low (57% and 43% of articles respectively) and no studies had adult participants. The psychosocial wellbeing supports provided by the 11 resources included psychoeducation, community support, and services/workshops. Conclusions: Despite the paucity of research and resources found, important exemplars demonstrate that existing programs can be adapted to support Indigenous people with ASD and other neurodevelopmental disorders. While future policy should endeavour to facilitate Indigenous people's access to support services, and encourage researchers to develop and evaluate programs promoting psychosocial wellbeing for this population, given complexities of designing and evaluating new programs, careful and appropriate cultural adaptations of existing evidence-based programs would increase feasibility of ongoing research without compromising outcomes. 

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Promoting family inclusive practice in home treatment teams

Purpose Families play an instrumental role in helping relatives experiencing mental health issues to stay well. In the context of wider initiatives promoting family and carer needs, this study aims to evaluate the feasibility, acceptability and potential benefits of bespoke training to develop clinicians’ skills in working with families in crisis. Design/methodology/approach The study was an uncontrolled evaluation of a one-day workshop for home treatment team staff using pre- and post-questionnaires. Findings In total, 83 staff members participated. Overall, there was a strong agreement for the involvement of families, which increased marginally after training. There were significant changes in views about talking to family members without service user consent (p = 0.001) and keeping them informed of their relative’s well-being (p = 0.02). Qualitative feedback indicated that participants enjoyed the interactive elements, particularly role-playing. Training provided an opportunity to practice skills, share knowledge and facilitate the integration of family work into their professional role. Research limitations/implications Confident support for families contributes to effective mediation of crisis and continuation of care; factors important in reducing admission rates and protecting interpersonal relationships. Overall, the consistency of responses obtained from participants suggests that this workshop offers a helpful introduction to a family approach at times of a mental health crisis. Originality/value This pilot evaluation suggests this new one-day workshop, is a feasible and acceptable training program, which is beneficial in developing clinicians’ skills in working with families in a crisis.

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A Personalized Voice-Based Diet Assistant for Caregivers of Alzheimer Disease and Related Dementias: System Development and Validation

Background: The world's aging population is increasing, with an expected increase in the prevalence of Alzheimer disease and related dementias (ADRD). Proper nutrition and good eating behavior show promise for preventing and slowing the progression of ADRD and consequently improving patients with ADRD's health status and quality of life. Most ADRD care is provided by informal caregivers, so assisting caregivers to manage patients with ADRD's diet is important. Objective: This study aims to design, develop, and test an artificial intelligence-powered voice assistant to help informal caregivers manage the daily diet of patients with ADRD and learn food and nutrition-related knowledge. Methods: The voice assistant is being implemented in several steps: construction of a comprehensive knowledge base with ontologies that define ADRD diet care and user profiles, and is extended with external knowledge graphs; management of conversation between users and the voice assistant; personalized ADRD diet services provided through a semantics-based knowledge graph search and reasoning engine; and system evaluation in use cases with additional qualitative evaluations. Results: A prototype voice assistant was evaluated in the lab using various use cases. Preliminary qualitative test results demonstrate reasonable rates of dialogue success and recommendation correctness. Conclusions: The voice assistant provides a natural, interactive interface for users, and it does not require the user to have a technical background, which may facilitate senior caregivers' use in their daily care tasks. This study suggests the feasibility of using the intelligent voice assistant to help caregivers manage patients with ADRD's diet.

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Experiences of relatives with outpatient palliative care: a cross-sectional study

Aim: The authors aimed to evaluate the experiences of the relatives of dying people, both in regard to benefits and special needs, when supported by a mobile palliative care bridging service (MPCBS), which exists to enable dying people to stay at home and to support patients' relatives. Design: A cross-sectional survey. Methods: A standardised survey was performed, asking 106 relatives of dying people about their experiences with the MPCBS (response rate=47.3%). Descriptive statistics were analysed using SPSS 23. Findings: Many relatives (62.5%) reported that their dying relations when discharged from a facility to stay at home were not symptom-free. The MPCBS helped relatives maintain home care, and this was reported to be helpful. Support provided by the MPCBS made it easier for 77.6% of relatives to adjust care as soon as situations changed, and helped ensure that symptoms could be better controlled, at least for 68.2% of relatives. Younger relatives felt more encouraged by the MPCBS to care for their relatives dying at home.

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The "PalliActive Caregivers" Intervention for Caregivers of Patients With Cancer in Palliative Care: A Feasibility Pilot Study

This pilot study aimed to assess the feasibility and possible effects of the "PalliActive Caregivers," nursing intervention, on the uncertainty in illness and quality of life of family caregivers of patients with cancer receiving palliative care. This pilot study used a randomized controlled design. The participants were 80 family caregivers. The experimental group received the novel "PalliActive Caregivers" intervention. Data were collected using a sociodemographic form, the Uncertainty in Illness Scale, the Quality of Life scale, and an Intervention satisfaction questionnaire. The caregivers who received the intervention "PalliActive Caregivers" reported a high degree of satisfaction (9.74 on a 10-point scale). The intervention showed a significant decrease in uncertainty regarding illness in the experimental group (P = .009), as well as a significant decrease in the psychological well-being of quality of life within the experimental and control groups, before and after the intervention (P = .013, P = .010). It is recommended that future studies using the "PalliActive Caregivers" intervention examine the effects on other variables such as the burden of patient's symptoms, caregiver burden and rewards, self-efficacy in symptom management, competence, unmet needs, and satisfaction with care.

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One size fits all? Contextualizing family-supportive supervision to help employees with eldercare responsibilities

Eldercare can pose significant challenges for both employees and organizations wherein supervisors serve as critical linchpins. To better inform practitioners on how to assist employees with eldercare responsibilities, we investigated important work outcomes of eldercare-supportive supervision (ESS), a specific form of family-supportive supervision. Drawing on the job demands-resources model and social information processing theory, we framed ESS as a critical informational cue and an important job resource in employees' immediate work environment that shapes employee work attitudes and behaviors. For this important segment of the workforce, we hypothesized that ESS could relate to employees' job performance and time banditry through work engagement, and that caregiver burden would moderate these relationships such that the beneficial effects of ESS would be stronger for employees with high caregiver burden. Using a vignette-based experimental (between-person) design, Study 1 (N = 70) found that employees reported significantly higher work engagement in the high (vs. low) ESS condition. Study 2 supported the indirect effects of ESS on employee job performance and time banditry via work engagement in a field sample (N = 162) of nurses with eldercare responsibilities. In Study 3 (N = 257), using a 3-wave time-lagged design, we replicated our findings and further demonstrated the incremental validity of ESS above and beyond other relevant supports. Finally, we demonstrated that the effect of ESS on work engagement and the indirect effects of ESS on job performance and time banditry were stronger for employees with high (vs. low) caregiver burden. Theoretical and practical implications were discussed. 

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Mobile applications for managing symptoms of patients with cancer at home: A scoping review

Background Education plays an important role in cancer symptom management for patients and their families. With the advancement of information and communication technology, there may be additional evidence for the use of mobile apps to support patient and family education. Purpose The purpose of this review was to explore and synthesize scientific literature about cancer symptom management mobile apps that can be used by patients and their families. Methods This review adopted a scoping review study framework, using electronic databases including EBSCO, PubMed, ProQuest, Science Direct, and Google Scholar using search keywords: ‘caregiver family’, ‘mobile application’, ‘symptom management’ and ‘palliative care’. Of a total of 2633 papers found, 11 papers were selected. Findings Assessment tools are a major component of mobile apps in reporting and assessing symptoms to provide appropriate education. The information in mobile apps is delivered through various mediums that include modules, videos, avatars and cultural integration features. Conclusion Mobile apps can improve provision of palliative care in several ways, most importantly by increasing the knowledge of the patient's family to manage cancer symptoms. Nurses are expected to play an active role in finding and utilizing appropriate mobile apps to assist families in managing a patient's symptoms at home.

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Irish Health Survey 2019 - Carers and Social Supports

This publication relating to “Carers and Social Supports” provides data and insights on Carers in Ireland (who they are, how many hours of caring they provide, etc.) and the extent to which people in Ireland can rely on informal social supports (assistance from neighbours for example). The publication also outlines, for those aged 65 years and older, the extent to which they experience difficulties with certain personal care and household activities.

The data in this publication was collected as part of the “Irish Health Survey” in 2019 and early 2020. The first health survey was collected for reference year 2015, but in a different way to how the data was collected for this publication – more detail on this follows. The detail in this publication is a subset of the broader data collected, and the “Main Results” publication is to be published on December 11th. This publication will outline various aspects of health in Ireland (health status of people in Ireland, their engagement with the health system and health determinants). Finally, on December 14th there will be a publication on the health experience of persons with disabilities. Again, this last publication is a subset of the main data collection for the Irish Health Survey.

The survey is based on self-reported data from persons aged 15 years and over, and outlines their view of their health status, the informal social supports available to them, and the extent to which they encounter (for persons aged 65 years and over) difficulties in performing personal care (for example, eating, dressing themselves, showering) or household activities (for example, performing housework or shopping). The data collection for this publication was conducted between July 2019 and February 2020 and accordingly relates to the pre-pandemic health and other experiences of respondents.

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The key aspects of online support that older family carers of people with dementia want at the end of life: A qualitative study

Objectives: Family carers towards the end of life face a range of difficult challenges and have high levels of support needs. The aim of this study was to explore the challenges carers of people with dementia face towards the end of life and the support needs which could be addressed by online support. Methods: Qualitative study using semi-structured interviews with 23 current and former family carers of people with dementia in England in 2016–2017. Interviews were analysed using thematic analysis methods. Results: Most carers interviewed had positive views of receiving support online via a website. Participants described a series of challenges they felt online support could address and help support them with when caring for someone with dementia towards the end of life: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) balancing their own needs with those of the individual; and 4) maintaining control and being the co-ordinator of care. However many valued a mix of technology and human interaction in receiving support. Conclusions: This study has identified the key challenges for carers at the end of life that could be met by online support. Online support offers a source of support to supplement face-to-face contact, as many carers still wish to talk to someone in person. This could help alleviate pressures which health and social care systems currently face.

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"It's Feasible to Write a Song": A Feasibility Study Examining Group Therapeutic Songwriting for People Living With Dementia and Their Family Caregivers

Background: Psychosocial interventions for people with dementia and their family caregivers together may sustain relationship quality and social connection. No previous music therapy research has examined the effects of group therapeutic songwriting (TSW) attended by people with dementia/family caregiver dyads.; Methods: This pre-post feasibility study aimed to examine the acceptability of a group TSW intervention for people with dementia/family caregiver dyads and test the sensitivity of the following outcomes: Quality of the Caregiver-Patient Relationship (QCPR, primary); Cornell Scale for Depression in Dementia (CSDD) and Quality of Life-Alzheimer's Dementia for people with dementia, Patient Health Questionnaire-9, Assessment of Quality of Life-8 Dimensions (AQoL-8D); and Zarit Burden Interview for family caregivers. Six weekly 1 h sessions guided participants to identify preferred music, brainstorm ideas, create lyrics, and record songs. Qualitative interviews were conducted with dyads who completed the intervention.; Results: Fourteen dyads were recruited and completed baseline assessments. Participants with dementia were aged 62-92 years ( M = 77, SD = 11). Caregiver participants (11 spouses, two daughters, one son) were aged 54-92 years ( M = 67, SD = 10.1). Four dyads withdrew owing to declining health or inconvenience before the program commenced ( n = 2) and after attending 1-2 sessions ( n = 2). Ten dyads formed four homogeneous TSW groups (71% completion). No statistically significant changes were detected for any measure. High QCPR ratings at baseline ( M = 57.1) and follow-up ( M = 57.4) demonstrated sustained relationship quality. For participants with dementia, large effect sizes for the CSDD suggested trends toward decreased depression ( d = -0.83) and improved mood ( d = -0.88). For family caregivers, a large effect size suggested a trend toward improvement for the AQoL-8D sub-domain examining independent living ( d = -0.93). Qualitative data indicated that session design and delivery were acceptable, and TSW was a positive shared experience with personal benefits, which supported rather than changed relationship quality.; Conclusion: High retention and qualitative data indicate that TSW was well received by participants. Effect sizes suggest that group TSW for dyads may have beneficial impacts on depression for people with dementia and quality of life for family caregivers. Future research with a fully powered sample is recommended to further examine the psychosocial impacts of group TSW for people living with dementia/family caregiver dyads. (Copyright © 2020 Clark, Stretton-Smith, Baker, Lee and Tamplin.)

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Is preparation for end of life associated with pre-death grief in caregivers of people with dementia?

Objectives: Family caregivers of people with dementia can experience loss and grief before death. We hypothesized that modifiable factors indicating preparation for end of life are associated with lower pre-death grief in caregivers. Design: Cross-sectional. Setting: Caregivers of people with dementia living at home or in a care home. Participants: In total, 150 caregivers, 77% female, mean age 63.0 (SD = 12.1). Participants cared for people with mild (25%), moderate (43%), or severe dementia (32%). Measurements: Primary outcome: Marwit-Meuser Caregiver Grief Inventory Short Form (MMCGI-SF). We included five factors reflecting preparation for end of life: (1) knowledge of dementia, (2) social support, (3) feeling supported by healthcare providers, (4) formalized end of life documents, and (5) end-of-life discussions with the person with dementia. We used multiple regression to assess associations between pre-death grief and preparation for end of life while controlling for confounders. We repeated this analysis with MMCGI-SF subscales ("personal sacrifice burden"; "heartfelt sadness"; "worry and felt isolation"). Results: Only one hypothesized factor (reduced social support) was strongly associated with higher grief intensity along with the confounders of female gender, spouse, or adult child relationship type and reduced relationship closeness. In exploratory analyses of MMCGI-SF subscales, one additional hypothesized factor was statistically significant; higher dementia knowledge was associated with lower "heartfelt sadness." Conclusion: We found limited support for our hypothesis. Future research may benefit from exploring strategies for enhancing caregivers' social support and networks as well as the effectiveness of educational interventions about the progression of dementia (ClinicalTrials.gov ID: NCT03332979).

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Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Systematic Review and Meta-Analysis

Background: Caring for people with dementia is perceived as one of the most stressful and difficult forms of caring. Family caregivers always experience high levels of psychological burden and physical strain, so effective and practical support is essential. Internet-based supportive interventions can provide convenient and efficient support and education to potentially reduce the physical and psychological burden associated with providing care. Objective: This review aimed to (1) assess the efficacy of internet-based supportive interventions in ameliorating health outcomes for family caregivers of people with dementia, and (2) evaluate the potential effects of internet-based supportive intervention access by caregivers on their care recipients. Methods: An electronic literature search of the PubMed, EMBASE, Web of Science, CINAHL, Cochrane Library, and PsycINFO databases was conducted up to January 2020. Two reviewers (ML and YZ) worked independently to identify randomized controlled trials (RCTs) that met the inclusion criteria and independently extracted data. The quality of the included RCTs was evaluated using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Standardized mean differences (SMDs) with 95% CIs were applied to calculate the pooled effect sizes. Results: In total, 17 RCTs met the eligibility criteria and were included in this systematic review. The meta-analysis showed that internet-based supportive interventions significantly ameliorated depressive symptoms (SMD=-0.21; 95% CI -0.31 to -0.10; P<.001), perceived stress (SMD=-0.40; 95% CI -0.55 to -0.24; P<.001), anxiety (SMD=-0.33; 95% CI -0.51 to -0.16; P<.001), and self-efficacy (SMD=0.19; 95% CI 0.05-0.33; P=.007) in dementia caregivers. No significant improvements were found in caregiver burden, coping competence, caregiver reactions to behavioral symptoms, or quality of life. Six studies assessed the unintended effects of internet-based supportive intervention access by caregivers on their care recipients. The results showed that internet-based supportive interventions had potential benefits on the quality of life and neuropsychiatric symptoms in care recipients. Conclusions: Internet-based supportive interventions are generally effective at ameliorating depressive symptoms, perceived stress, anxiety, and self-efficacy in dementia caregivers and have potential benefits on care recipients. Future studies are encouraged to adopt personalized internet-based supportive interventions to improve the health of family caregivers and their care recipients. Trial Registration: PROSPERO CRD42020162434; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=162434.

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An international systematic review of dementia caregiving interventions for Chinese families

Objectives: Older Asians and Chinese are among the least studied populations in the dementia caregiving literature. This review seeks to critically synthesize the literature on intervention characteristics, components and tailoring strategies for dementia family caregivers in Chinese communities globally. Methods: Five electronic databases (PsychINFO, PubMed, CINAHL, ScienceDirect and Google Scholar) were searched for articles published between 1980 and July 2018. The protocol of this review was registered with PROSPERO (CRD42019132800). Results: Twenty‐nine unique interventions across 39 papers met inclusion criteria. Results from descriptive and thematic syntheses revealed that most interventions were psychoeducational, CBT‐based, multicomponent, structured, and less than a year in duration. Disease education, management of behavioral and psychological symptoms of dementia, stress coping techniques, and referral to community resources were frequently included in interventions. Community‐, culture‐ and language‐focused strategies were used to tailor interventions. The most common tailoring strategies were: (a) using community networks and media for outreach and recruitment; (b) making translations and language adaptations to the intervention materials; and (c) focusing on trust and therapeutic alliance. Most interventions produced desired outcomes, particularly reducing caregiver burden and increasing self‐efficacy. Conclusions: To our knowledge, this is the first review to date that systematically synthesized the characteristics and tailoring of dementia caregiving interventions for Chinese families globally. Current findings suggest that most interventions are effective, although many only superficially address Chinese culture. Future research should incorporate Chinese values and cross‐cultural challenges into caregiving interventions for deep‐level adaptations that could potentially be more effective to engage and support Chinese caregivers.

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An integrative group movement program for people with dementia and care partners together (Paired PLIÉ): initial process evaluation

Objectives: To understand feedback from participants in Paired PLIÉ (Preventing Loss of Independence through Exercise), a novel, integrative group movement program for people with dementia and their care partners, in order to refine the intervention and study procedures. Method: Data sources included daily logs from the first Paired PLIÉ RCT group, final reflections from the second Paired PLIÉ RCT group, and responses to requests for feedback and letters of support from Paired PLIÉ community class participants. All data are reports from care partners. The qualitative coding process was iterative and conducted with a multidisciplinary team. The coding team began with a previously established framework that was modified and expanded to reflect emerging themes. Regular team meetings were held to confirm validity and to reach consensus around the coding system as it was developed and applied. Reliability was checked by having a second team member apply the coding system to a subset of the data. Results: Key themes that emerged included care partner-reported improvements in physical functioning, cognitive functioning, social/emotional functioning, and relationship quality that were attributed to participation in Paired PLIÉ. Opportunities to improve the intervention and reduce study burden were identified. Care partners who transitioned to the community class after participating in the Paired PLIÉ study reported ongoing benefits. Conclusion: These qualitative results show that people with dementia and their care partners can participate in and benefit from community-based programs like Paired PLIÉ that include both partners, and focus on building skills to maintain function and quality of life. 

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Informal carers

This House of Commons Library briefing paper provides information about the number of informal carers in the UK and the issues they face. It also explains the rights, benefits and support available to informal carers as well as current and previous Government policy on caring.

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Impact of receiving recorded mental health recovery narratives on quality of life in people experiencing psychosis, people experiencing other mental health problems and for informal carers: Narrative Experiences Online (NEON) study protocol for three rand

Background: Mental health recovery narratives have been defined as first-person lived experience accounts of recovery from mental health problems which refer to events or actions over a period of time and which include elements of adversity or struggle, and also self-defined strengths, successes or survival. They are readily available in invariant recorded form, including text, audio or video. Previous studies have provided evidence that receiving recorded recovery narratives can provide benefits to recipients. This protocol describes three pragmatic trials that will be conducted by the Narrative Experiences Online (NEON) study using the NEON Intervention, a web application that delivers recorded recovery narratives to its users. The aim of the NEON Trial is to understand whether receiving online recorded recovery narratives through the NEON Intervention benefits people with experience of psychosis. The aim of the NEON-O and NEON-C trials is to evaluate the feasibility of conducting a definitive trial on the use of the NEON Intervention with people experiencing non-psychosis mental health problems and those who care for others experiencing mental health problems respectively. Methods: The NEON Trial will recruit 683 participants with experience of psychosis. The NEON-O Trial will recruit at least 100 participants with experience of non-psychosis mental health problems. The NEON-C Trial will recruit at least 100 participants with experience of caring for others who have experienced mental health problems. In all three trials, participants will be randomly allocated into one of two arms. Intervention arm participants will receive treatment as usual plus immediate access to the NEON Intervention for 1 year. Control arm participants will receive treatment as usual plus access to the NEON Intervention after 1 year. All participants will complete demographics and outcome measures at baseline, 1 week, 12 weeks and 52 weeks. For the NEON Trial, the primary outcome measure is the Manchester Short Assessment of Quality of Life at 52 weeks, and secondary outcome measures are the CORE-10, Herth Hope Index, Mental Health Confidence Scale and Meaning in Life Questionnaire. A cost-effectiveness analysis will be conducted using data collected through the EQ-5D-5 L and the Client Service Receipt Inventory. Discussion:  NEON Trial analyses will establish both effectiveness and cost-effectiveness of the NEON Intervention for people with experience of psychosis, and hence inform future clinical recommendations for this population. Trial Registration: All trials were prospectively registered with ISRCTN. NEON Trial: ISRCTN11152837 . Registered on 13 August 2018. NEON-C Trial: ISRCTN76355273 . Registered on 9 January 2020. NEON-O Trial: ISRCTN63197153 . Registered on 9 January 2020. 

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The Impact of Receiving a Family-Oriented Therapeutic Conversation Intervention Before and During Bereavement Among Family Cancer Caregivers: A Nonrandomized Trial

Effective communication is the foundation of quality care in palliative nursing. As frontline palliative home care providers, nurses could foster more effective bereavement coping skills through therapeutic conversations. The purpose of this study was to evaluate the impact of a nursing intervention offered to bereaved family cancer caregivers. This was a quasi-experimental design, with a posttest-only comparison of the intervention and control groups receiving usual care. Bereaved caregivers (n = 51) receiving services from a specialized palliative home care unit participated and completed measures of depression, anxiety, stress, and grief reactions 3, 5, and 6 months after their close relative had died.There was a significant decrease in anxiety symptoms in the intervention group compared with the control group across all 3 time points. Anxiety and stress symptoms also decreased over time in the 2 groups combined, but this decrease was not observed for depression. When evaluating grief reactions, the intervention group had a lower mean of controlled grief responses, across the posttest period, than the control group. Results demonstrate that providing bereaved family caregivers the opportunity to participate in a therapeutic conversation intervention might reduce distressing symptoms in early bereavement.

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Hospice Family Caregivers' Use of Audio Diaries: Preliminary Findings (GP793)

Objectives: • Describe the implications of emotional processing of stressful events for hospice family caregivers. • Interpret preliminary findings from textual data analysis of hospice family caregiver diaries.  Importance: Evidence suggests that meaning-making and emotional processing can improve home hospice family caregivers' (HFCs) well-being. Previous work has used diary writing to process stressful events; in the current study, HFCs were asked to record brief daily audio diaries.  Objective(s): To determine the feasibility of capturing audio diaries and describe diary content.  Method(s): In an ongoing multi-site, multi-method prospective longitudinal study, HFCs of cancer patients report daily fluctuation of patient and their own symptoms via an automated telephone system. Additionally they are randomly assigned to: discuss additional symptoms or to discuss their thoughts/feelings. Thirty-six (85.7%) participants to date have completed at least one audio diary. For this preliminary analysis, we selected 14 diary recordings/condition (n=28) to describe and compare.  Results: Participants are 78.6% female, on average 53.0 years old, and most are a spouse/partner (46.4%) or a child (35.7%) caregiver. Audio data were transcribed and aggregated by condition. Both Linguistic Inquiry Word Count (LIWC) and NVivo 12 were used to analyze word use. Time was the most common theme in both conditions, but was more common in the symptom condition (p=.08). There was no difference in overall negative/positive word valence use, with 23% positivity and 77% negativity across both groups. However, a significant difference in the use of specific emotion words was found; the thoughts/feeling condition used more anger-related words (p=.04), while the symptom condition used more anxiety words (p=.003).  Conclusion(s): Our preliminary findings suggest that most HFCs will use audio diaries to express concerns and that the focus of open-ended prompts may facilitate different emotional expression.  Impact: Low-cost, easy-to-use audio diaries may be a useful emotional processing tool for HFCs. Future research is warranted of a larger HFC sample examining their repeated daily use of audio diaries to assess for impact on emotional well-being and bereavement adjustment.

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Home First: Exploring the Impact of Community-based Home Care for Older Adults and Their Family Caregivers

Given the rapidly expanding older adult population, finding health care approaches that support older adults to age in their choice of place, with an accompanying philosophical re-orientation of health services, is becoming more urgent. We studied the Home Care Home First – Quick Response Project to understand how clients over age 75 and their family caregivers perceived the enhanced community-based services delivered through Home First. Using interpretive description as the methodological design, we explored the experiences of eight older adults and 11 family caregivers; all older adults were enrolled in Home First due to a significant change in their health status. We identified four themes: growing older in chosen places with support, philosophy of care, processes of Home First, and the significance of Home First for clients. Overall, clients and family caregivers responded positively to the Home First services. Clients valued their independence and growing older in places they had specifically chosen.

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Group acceptance and commitment therapy for patients and caregivers in psychosis services: Feasibility of training and a preliminary randomized controlled evaluation

Objective: Psychological interventions reduce the impact of psychosis, but widescale implementation is problematic. We tested the feasibility of group acceptance and commitment therapy for Psychosis (G‐ACTp), delivered by frontline staff, and co‐facilitated by service‐user experts‐by‐experience (SU‐EbyE), for service‐users and informal caregivers (ISRCTN: 68540929). We estimated recruitment/retention rates and outcome variability for future evaluation. Methods: Staff and SU‐EbyE facilitators completed 1‐day workshops, then delivered closely supervised G‐ACTp, comprising four sessions (weeks 1–4) and two boosters (10 and 12 weeks). Participants recruited from adult community psychosis services were randomized to receive G‐ACTp immediately or after 12 weeks, completing outcome assessments at 0, 4, and 12 weeks. Service‐use/month was calculated for 1‐year pre‐randomization, weeks 0–12, and 5‐year uncontrolled follow‐up. Results: Of 41 facilitators trained (29 staff, 12 SU‐EbyE), 29 (71%; 17 staff, 12 SU‐EbyE) delivered 18 G‐ACTp courses. Participant refusal rates were low (9% of service‐users [10/112]; 5% of caregivers [4/79]); 60% of those invited to participate attended ≥1 G‐ACTp session (64% of service‐users [39/61]; 56% of caregivers [35/63]). Randomization of facilitators and participants proved problematic and participant follow‐up was incomplete (78% [66/85]; 82% of service‐users [36/44]; 73% of caregivers [30/41]). Effect sizes ranged from very small to large mostly favouring treatment. Service‐use reductions require cautious interpretation, as very few participants incurred costs. Conclusions: Implementation appears feasible for service‐users; for caregivers, retention needs improving. Outcome variability indicated n = 100–300/arm followed up (α = 0.05, 90% power). Methodological limitations' mean replication is needed: identified sources of potential bias may be reduced in a cluster randomized design with sessional outcome completion. Practitioner points: Group acceptance and commitment therapy can be successfully adapted for people with psychosis and their caregivers.Implementation (training and delivery) is possible in routine community mental health care settings.Clinical and economic outcomes are promising, but replication is needed.Recommendations are made for future studies. 

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Feasibility of ActivABLES to promote home-based exercise and physical activity of community-dwelling stroke survivors with support from caregivers: A mixed methods study

Background: Technical applications can promote home-based exercise and physical activity of community-dwelling stroke survivors. Caregivers are often able and willing to assist with home-based exercise and physical activity but lack the knowledge and resources to do so. ActivABLES was established to promote home-based exercise and physical activity among community-dwelling stroke survivors, with support from their caregivers. The aim of our study is to investigate the feasibility of ActivABLES in terms of acceptability, demand, implementation and practicality. Methods: A convergent design of mixed methods research in which quantitative results were combined with personal experiences of a four-week use of ActivABLES by community-dwelling stroke survivors with support from their caregivers. Data collection before, during and after the four-week period included the Berg Balance Scale (BBS), Activities-Specific Balance Confidence Scale (ABC), Timed-Up-and-Go (TUG) and Five Times Sit to Stand Test (5xSST) and data from motion detectors. Semi-structured interviews were conducted with stroke survivors and caregivers after the four-week period. Descriptive statistics were used for quantitative data. Qualitative data was analysed with direct content analysis. Themes were identified related to the domains of feasibility: acceptability, demand, implementation and practicality. Data was integrated by examining any (dis)congruence in the quantitative and qualitative findings. Results: Ten stroke survivors aged 55-79 years participated with their informal caregivers. Functional improvements were shown in BBS (+ 2.5), ABC (+ 0.9), TUG (- 4.2) and 5xSST (- 2.7). More physical activity was detected with motion detectors (stand up/sit down + 2, number of steps + 227, standing + 0.3 h, hours sitting/lying - 0.3 h). The qualitative interviews identified themes for each feasibility domain: (i) acceptability: appreciation, functional improvements, self-initiated activities and expressed potential for future stroke survivors; (2) demand: reported use, interest in further use and need for follow-up; (3) implementation: importance of feedback, variety of exercises and progression of exercises and (4) practicality: need for support and technical problems. The quantitative and qualitative findings converged well with each other and supported the feasibility of ActivABLES. Conclusions: ActivABLES is feasible and can be a good asset for stroke survivors with slight or moderate disability to use in their homes. Further studies are needed with larger samples.

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The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study

Background: Managing the complex and long-term care needs of persons living with Alzheimer disease and related dementias (ADRD) can adversely impact the health of informal caregivers and their care recipients. Web-based personal health records (PHRs) are one way to potentially alleviate a caregiver's burden by simplifying ADRD health care management.; Objective: This study aimed to evaluate Personal Health Record for Persons with Dementia and Their Family Caregivers (PHR-ADRD), a free web-based information exchange tool, using a multiphase mixed methods approach.; Methods: Dementia caregivers (N=34) were surveyed for their well-being and perceptions of PHR-ADRD feasibility and utility at 6 and 12 months using close- and open-ended questions as well as a semistructured interview (n=8). Exploratory analyses compared participants' characteristics as well as PHR-ADRD use and experiences based on overall favorability status.; Results: Feasibility and utility scores decreased over time, but a subset of participants indicated that the system was helpful. Quantitative comparisons could not explain why some participants indicated favorable, neutral, or unfavorable views of the system overall or had not engaged with PHR-ADRD. Qualitative findings suggested that technology literacy and primary care provider buy-in were barriers. Both qualitative and qualitative findings indicated that time constraints to learn and use the system affected most participants.; Conclusions: Development and dissemination of PHRs for family caregivers of persons with ADRD should aim to make systems user-friendly for persons with limited time and technological literacy. Establishing health care provider buy-in may be essential to the future success of any PHR system. 

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Family carers' perspectives of the Alzheimer Café in Ireland

Background: The Alzheimer Café is a psychosocial intervention shown to have benefits for family carers of people with dementia. Family carers experience a period of change across all aspects of their lives following the dementia diagnosis, and require new skills and tools to navigate these new landscapes. The objective of this research was to investigate family carers' perspectives of the Alzheimer Café in Ireland, and explore how attendance may translate into broader benefits in their lives. This paper also provides an overview of Alzheimer Café models, which exist internationally. Methods: Semi-structured interviews were conducted with nine family carers of people with dementia who were currently attending or had attended an Alzheimer Café in the preceding six months. The research was conducted in three Alzheimer Cafés in Ireland. Data analysis was conducted using Braun and Clarke's six step thematic analysis framework. Results: Community, atmosphere, activity and information were described as core features of the Alzheimer Café in Ireland. The Alzheimer Café was described as a community with a good atmosphere encompassing emotional support, friendship, equality and inclusion. Family carer also highlighted Alzheimer Cafés could potentially facilitate wider community awareness and engagement. The Alzheimer Café was shown to provide an activity which facilitated relationship building within care dyads as well as with other attendees. Several information streams were identified, including guest speaker input, attendees' shared experiences, and specific advice from healthcare professionals. Conclusion: The Alzheimer Café offers strong personal support to family carers of people with dementia. Our findings suggest that Alzheimer Cafés can build family carers' capacity to manage new social, environmental and cultural challenges associated with dementia. While it is important the Alzheimer Café is enjoyable, has useful information and is supportive, it is equally important that these features generate sustained improvements for family carers external to the Alzheimer Café. 

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Exploring the Impact of a Peer-Led Education Group for Loved Ones of Individuals with Borderline Personality Disorder: A Pilot Study

Clinicians have long identified the psychological impacts and objective burdens on family members and caregivers who support loved ones with psychiatric conditions. However, there is a lack of programming available to support families with relatives who have been diagnosed with a personality disorder, and research in this area is scant. The current pilot study evaluated the impact of providing a peer-led education group for loved ones of individuals diagnosed with borderline personality disorder (BPD). A mixed-methods study design was implemented: quantitative self-report scales were used to derive scores of mastery and burden and focus groups gathered qualitative narratives. Data were collected from participants (N = 15) before and after the group intervention, as well as 4 months later. Quantitative results indicated that while participants initially reported a sense of burden in their caregiving role, their self-report of this phenomenon reduced over time following engagement with the group. The focus groups revealed that participants found the group had a positive impact on their well-being as a result of the information, skills acquisition, and support/validation they received. They also noted clinical improvements for their relatives with BPD. This study provides preliminary evidence for the effectiveness of the peer-led education group in supporting families. The results suggest that particular variables such as peer leadership, skills-based learning, and focus on caregiver wellness—rather than on the person with a diagnosis – may explain improved outcomes of this family intervention.

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Evaluation of START (STrAtegies for RelaTives) adapted for carers of people with Lewy body dementia

Family carers of people with Lewy body dementia (LBD) have a particularly high burden of care, as LBD has a faster rate of decline, greater physical dependence and additional neuropsychiatric disturbances compared with other dementias. Despite this, there are no evidence-based support services designed specifically for LBD carers. STrAtegies for RelaTives (START) is an eight-session, individually delivered coping therapy that has been shown in a randomised controlled trial to reduce depression and anxiety symptoms and increase quality of life in carers of people with dementia, with effects lasting several years. We adapted START for LBD, and piloted its use both face-to-face and on the phone with 10 carers to test acceptability and indications of similar effects in this group. Our findings suggest that the therapy was acceptable and feasible using either delivery mode, providing much appreciated and needed strategies, education and support for carers of people with LBD. Trials of effectiveness are now needed. 

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Ensemble programme for early intervention in informal caregivers of psychiatric adult patients: a protocol for a randomised controlled trial

Introduction: Informal caregivers play a major role in the support and maintenance of community patients with severe psychiatric disorders. A pilot study showed that an individualised brief intervention such as the Ensemble programme leads to significant improvements in psychological health state and optimism.; Methods and Analysis: This randomised controlled trial aims to compare the efficacy of using Ensemble in improving informal caregivers' psychological health states and the ability to play an active role in their situations with that of support as usual. Improvements on the psychological health global index will be measured three times (T0-pre, T1-post and T3 2 months follow) with standardised questionnaires (the Global Severity Index of Brief Inventory Symptoms, the Life Orientation Test-Revised, the 36-item Medical Outcome Study Short-Form Health Survey and the French Zarit Burden Interview). Differences between groups in post-test and pretest values will be examined using an analysis of covariance for each outcome variable. The severity of illness measured by the Social and Occupational Functioning Assessment Scale will also be collected at T0 and T2 to compare eventual patient improvements. At the end of the programme, the experiences of the 20 patients participating in the Ensemble programme will be evaluated qualitatively.; Ethics and Dissemination: The research protocol received full authorisation from the Human Research Ethics Committee of the Vaud state, Switzerland. The principal paper will concern the results of the experimental design used to test the Ensemble programme. The research team will prioritise open access publications.; Trial Registration Number: NCT04020497. 

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Elements of Family, Social Relationships, and Caregiving in Palliative Care mHealth: A Scoping Review (GP781)

Objectives: • Identify research-based and commercial mobile applications currently available to support palliative and end of life care. • Evaluate the utility of current palliative care and end of life mobile applications for families and caregiving support among diverse populations.  Importance: Mobile health (mHealth) can increase access to and awareness of palliative and end of life (PCEOL) care among patients, families, and caregivers from diverse backgrounds.  Objective(s): The objective of this scoping review is to describe the inclusion and features for family, social relationships, and caregivers in PCEOL-specific mHealth.  Method(s): We conducted a systematic search of PCEOL mHealth that included: 1) research-based mobile applications (apps) from PubMed, PsycINFO, and Web of Science published between 1/1/10-3/31/19, and 2) commercially available apps for iPhone, Google Play, and Amazon Appstore in April 2019. Apps were included if they focused on at least one element of PCEOL and targeted adults with serious life-limiting illness and/or their family and caregivers. Two reviewers independently assessed abstracts, app titles, and descriptions against the inclusion and exclusion criteria.  Findings: Overall, 10 articles describing 9 individual research-based apps and 22 commercially available apps were identified (N=32). Apps targeted symptom management (74.2%) followed by decision support (19.4%) and bereavement or grief (16.1%). Commercially available apps were designed for both patients and family caregivers (n=9/22, 40.9%), while research apps were designed for patient use (n=8/9, 88.9%). Features allowing the patient to share app-generated materials, e.g., advanced care directives or legacy projects, via email or text were the most common patient-caregiver features (n=10/22, 45.5%). Only 2/32 (6.3%) of apps considered contextual factors such as marriage, social isolation, or socioeconomic status of the patient or family caregivers.  Conclusion(s): Results suggest there is an emerging presence of apps for patients and caregivers dealing with serious illness, yet there are many needs for developers and researchers to address.  Impact: Additional research is needed for apps that embrace a team approach to information sharing, target family and caregiver specific issues, promote access to palliative care, and comprehensively address palliative needs.

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Efficacy of a Smartphone App Intervention for Reducing Caregiver Stress: Randomized Controlled Trial

Background: Caregivers play a pivotal role in maintaining an economically viable health care system, yet they are characterized by low levels of psychological well-being and consistently report unmet needs for psychological support. Mobile app-based (mobile health [mHealth]) interventions present a novel approach to both reducing stress and improving well-being.; Objective: This study aims to evaluate the effectiveness of a self-guided mobile app-based psychological intervention for people providing care to family or friends with a physical or mental disability.; Methods: In a randomized, single-blind, controlled trial, 183 caregivers recruited through the web were randomly allocated to either an intervention (n=73) or active control (n=110) condition. The intervention app contained treatment modules combining daily self-monitoring with third-wave (mindfulness-based) cognitive-behavioral therapies, whereas the active control app contained only self-monitoring features. Both programs were completed over a 5-week period. It was hypothesized that intervention app exposure would be associated with decreases in depression, anxiety, and stress, and increases in well-being, self-esteem, optimism, primary and secondary control, and social support. Outcomes were assessed at baseline, postintervention, and 3-4 months postintervention. App quality was also assessed.; Results: In total, 25% (18/73) of the intervention participants were lost to follow-up at 3 months, and 30.9% (34/110) of the participants from the wait-list control group dropped out before the postintervention survey. The intervention group experienced reductions in stress (b=-2.07; P=.04) and depressive symptoms (b=-1.36; P=.05) from baseline to postintervention. These changes were further enhanced from postintervention to follow-up, with the intervention group continuing to report lower levels of depression (b=-1.82; P=.03) and higher levels of emotional well-being (b=6.13; P<.001), optimism (b=0.78; P=.007), self-esteem (b=-0.84; P=.005), support from family (b=2.15; P=.001), support from significant others (b=2.66; P<.001), and subjective well-being (b=4.82; P<.001). On average, participants completed 2.5 (SD 1.05) out of 5 treatment modules. The overall quality of the app was also rated highly, with a mean score of 3.94 out of a maximum score of 5 (SD 0.58).; Conclusions: This study demonstrates that mHealth psychological interventions are an effective treatment option for caregivers experiencing high levels of stress. Recommendations for improving mHealth interventions for caregivers include offering flexibility and customization in the treatment design.; Trial Registration: Australian New Zealand Clinical Trial Registry ACTRN12616000996460; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371170. 

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The effects of offering flexible work practices to employees with unpaid caregiving responsibilities for elderly or disabled family members

Approximately one in 10 employees in Australia, the United States, and Europe have unpaid caregiving responsibilities for elderly or disabled family members. This combination of employment and caregiving roles is problematic when there is conflict between their simultaneous demands. Flexible work practices can be an important mechanism for assisting these employees. However, limited attention has been given to determining the benefits of flexible work practices for these employees, or the process by which these effects arise. We address these gaps via a survey of employees with unpaid caregiving responsibilities for family who are elderly or disabled. Results indicate that greater availability of flexible work practices improves perceptions of workplace support for combining caregiving and employment. This effect was partially and sequentially mediated by disclosure, practice utilization, and practice helpfulness. Additionally, practice availability had a direct positive effect on practice utilization, while disclosure had a direct positive effect on perceived support. Overall, the findings demonstrate the benefits of flexible work practices for employees with caregiving responsibilities. The study also points the way to interventions that can improve the effectiveness of flexible work practices by demonstrating how the potential benefits of these practices are translated into actual improvements in perceived support.

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Effects of a Video-based Intervention on Caregiver Confidence for Managing Dementia Care Challenges: Findings from the FamTechCare Clinical Trial

The Supporting Family Caregivers with Technology trial tested the FamTechCare video support intervention against telephone support. Dementia caregivers' video-recorded challenging care encounters and an interdisciplinary team provided tailored feedback. This paper reports on the effects of the intervention on caregiver confidence in managing priority challenges, a secondary outcome of this non-blinded parallel randomized controlled trial. Caregiver/person living with dementia dyads were randomized to the experimental FamTechCare video support (n = 43) or attention control telephone support (n = 41) groups. Caregivers providing in-home care to a person living with mild or more severe dementia were eligible. Caregivers identified three priority challenges using the Caregiver Target Problems Questionnaire and rated the frequency and severity of each challenge and their confidence managing the challenge at baseline and 3-months. Challenges were classified using the FamTechCare Technology-supported Dementia Care Typology. Effects on confidence were compared between groups using the Wilcoxon rank-sum test and within groups using the Wilcoxon signed-rank test. Caregiver priority challenges included managing dementia behaviors, understanding disease expectations, and performing activity of daily living care. Improvements were observed across the three categories in both groups; however, not all changes were statistically significant. No significant differences were identified between groups. Caregivers in the FamTechCare group reported benefit across all priority challenges including managing dementia behaviors, understanding disease expectations, and performing activity of daily living care. Innovative technology provides new opportunities to support family caregivers in dementia home care. Video-recording can be used to enhance support for family caregivers facing care challenges.

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Effectiveness of a Physical Therapeutic Exercise Programme for Caregivers of Dependent Patients: A Pragmatic Randomised Controlled Trial from Spanish Primary Care

Female family caregivers (FFCs) constitute one of the basic supports of socio-health care for dependence in developed countries. The care provided by FFCs may impact their physical and mental health, negatively affecting their quality of life. In order to alleviate the consequences of providing care on FFCs, the Spanish Public Health System has developed the family caregiver care programme (FCCP) to be applied in primary care (PC) centres. The effectiveness of this programme is limited. To date, the addition of a physical therapeutic exercise (PTE) programme to FCCP has not been evaluated. A randomised multicentre clinical trial was carried out in two PC centres of the Spanish Public Health System. In total, 68 FFCs were recruited. The experimental group (EG) performed the usual FCCP (4 sessions, 6 h) added to a PTE programme (36 sessions in 12 weeks) whereas the control group performed the usual FCCP performed in PC. The experimental treatment improved quality of life (d = 1.17 in physical component summary), subjective burden (d = 2.38), anxiety (d = 1.52), depression (d = 1.37) and health-related physical condition (d = 2.44 in endurance). Differences between the groups ( p < 0.05) were clinically relevant in favour of the EG. The experimental treatment generates high levels of satisfaction.

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The effectiveness and cost-effectiveness of hospital-based specialist palliative care for adults with advanced illness and their caregivers

Background: Serious illness is often characterised by physical/psychological problems, family support needs, and high healthcare resource use. Hospital-based specialist palliative care (HSPC) has developed to assist in better meeting the needs of patients and their families and potentially reducing hospital care expenditure. There is a need for clarity on the effectiveness and optimal models of HSPC, given that most people still die in hospital and also to allocate scarce resources judiciously.; Objectives: To assess the effectiveness and cost-effectiveness of HSPC compared to usual care for adults with advanced illness (hereafter patients) and their unpaid caregivers/families.; Search Methods: We searched CENTRAL, CDSR, DARE and HTA database via the Cochrane Library; MEDLINE; Embase; CINAHL; PsycINFO; CareSearch; National Health Service Economic Evaluation Database (NHS EED) and two trial registers to August 2019, together with checking of reference lists and relevant systematic reviews, citation searching and contact with experts to identify additional studies.; Selection Criteria: We included randomised controlled trials (RCTs) evaluating the impact of HSPC on outcomes for patients or their unpaid caregivers/families, or both. HSPC was defined as specialist palliative care delivered by a palliative care team that is based in a hospital providing holistic care, co-ordination by a multidisciplinary team, and collaboration between HSPC providers and generalists. HSPC was provided to patients while they were admitted as inpatients to acute care hospitals, outpatients or patients receiving care from hospital outreach teams at home. The comparator was usual care, defined as inpatient or outpatient hospital care without specialist palliative care input at the point of entry into the study, community care or hospice care provided outside of the hospital setting.; Data Collection and Analysis: We used standard methodological procedures expected by Cochrane. We assessed risk of bias and extracted data. To account for use of different scales across studies, we calculated standardised mean differences (SMDs) with 95% confidence intervals (CIs) for continuous data. We used an inverse variance random-effects model. For binary data, we calculated odds ratio (ORs) with 95% CIs. We assessed the evidence using GRADE and created a 'Summary of findings' table. Our primary outcomes were patient health-related quality of life (HRQoL) and symptom burden (a collection of two or more symptoms). Key secondary outcomes were pain, depression, satisfaction with care, achieving preferred place of death, mortality/survival, unpaid caregiver burden, and cost-effectiveness. Qualitative data was analysed where available.;

Main Results: We identified 42 RCTs involving 7779 participants (6678 patients and 1101 caregivers/family members). Twenty-one studies were with cancer populations, 14 were with non-cancer populations (of which six were with heart failure patients), and seven with mixed cancer and non-cancer populations (mixed diagnoses). HSPC was offered in different ways and included the following models: ward-based, inpatient consult, outpatient, hospital-at-home or hospital outreach, and service provision across multiple settings which included hospital. For our main analyses, we pooled data from studies reporting adjusted endpoint values. Forty studies had a high risk of bias in at least one domain. Compared with usual care, HSPC improved patient HRQoL with a small effect size of 0.26 SMD over usual care (95% CI 0.15 to 0.37; I 2 = 3%, 10 studies, 1344 participants, low-quality evidence, higher scores indicate better patient HRQoL). HSPC also improved other person-centred outcomes. It reduced patient symptom burden with a small effect size of -0.26 SMD over usual care (95% CI -0.41 to -0.12; I 2 = 0%, 6 studies, 761 participants, very low-quality evidence, lower scores indicate lower symptom burden). HSPC improved patient satisfaction with care with a small effect size of 0.36 SMD over usual care (95% CI 0.41 to 0.57; I 2 = 0%, 2 studies, 37 participants, low-quality evidence, higher scores indicate better patient satisfaction with care). Using home death as a proxy measure for achieving patient's preferred place of death, patients were more likely to die at home with HSPC compared to usual care (OR 1.63, 95% CI 1.23 to 2.16; I 2 = 0%, 7 studies, 861 participants, low-quality evidence). Data on pain (4 studies, 525 participants) showed no evidence of a difference between HSPC and usual care (SMD -0.16, 95% CI -0.33 to 0.01; I 2 = 0%, very low-quality evidence). Eight studies (N = 1252 participants) reported on adverse events and very low-quality evidence did not demonstrate an effect of HSPC on serious harms. Two studies (170 participants) presented data on caregiver burden and both found no evidence of effect of HSPC (very low-quality evidence). We included 13 economic studies (2103 participants). Overall, the evidence on cost-effectiveness of HSPC compared to usual care was inconsistent among the four full economic studies. Other studies that used only partial economic analysis and those that presented more limited resource use and cost information also had inconsistent results (very low-quality evidence). Quality of the evidence The quality of the evidence assessed using GRADE was very low to low, downgraded due to a high risk of bias, inconsistency and imprecision.; Authors' Conclusions: Very low- to low-quality evidence suggests that when compared to usual care, HSPC may offer small benefits for several person-centred outcomes including patient HRQoL, symptom burden and patient satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death). While we found no evidence that HSPC causes serious harms, the evidence was insufficient to draw strong conclusions. Although these are only small effect sizes, they may be clinically relevant at an advanced stage of disease with limited prognosis, and are person-centred outcomes important to many patients and families. More well conducted studies are needed to study populations with non-malignant diseases and mixed diagnoses, ward-based models of HSPC, 24 hours access (out-of-hours care) as part of HSPC, pain, achieving patient preferred place of care, patient satisfaction with care, caregiver outcomes (satisfaction with care, burden, depression, anxiety, grief, quality of life), and cost-effectiveness of HSPC. In addition, research is needed to provide validated person-centred outcomes to be used across studies and populations. 

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Effect of the Carer Support Needs Assessment Tool intervention (CSNAT-I) in the Danish specialised palliative care setting: a stepped-wedge cluster randomised controlled trial

Background: The Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improve end-of-life care support for informal caregivers. This study investigated the impact of the CSNAT-I on caregivers of patients recently enrolled in specialised palliative care (SPC) at home in Denmark.; Methods: A stepped-wedge cluster randomised controlled trial with nine clusters (ie, SPC teams). Outcome measures were collected using caregiver questionnaires at baseline (T0) and 2-week (T1) and 4-week (T2) follow-up.; Results: A total of 437 caregivers were enrolled (control group, n=255; intervention group, n=182). No intervention effect was found on the primary outcome, caregiver strain at T1 (p=0.1865). However, positive effects were found at T1 and T2 on attention to caregivers' well-being (p<0.0001), quality of information and communication (p<0.0001), amount of information (T1: p=0.0002; T2: p<0.0001), involvement (T1: p=0.0045; T2: p<0.0001), talking about greatest burdens (p<0.0001) and assistance in managing greatest burdens (p<0.0001). The effect sizes of these differences were medium or large and seemed to increase from T1 to T2. At T1, positive effects were found on distress (p=0.0178) and home care responsibility (p=0.0024). No effect was found on the remaining outcomes.; Conclusion: Although no effect was found on caregiver strain, the CSNAT-I showed positive effects on caregiver distress, home care responsibility and key outcomes regarding caregivers' experience of the interaction with healthcare professionals.; Trial Registration Number: NCT03466580. 

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The role of formal care services in supporting young people who provide unpaid care in England

A large proportion of long-term care for people with disabilities and/or long-term health conditions is provided by unpaid carers, including young people, with potential impacts on their education, employment and health. Supporting carers is a focus of long-term care practice and policy in many countries. A key part of this support in England is through provision of services to the person with care needs (often called 'replacement' care). We aimed to explore the role of replacement care services in supporting young adult carers' health, education, and employment. We used a mixed-methods approach: self-completed questionnaires and in-depth follow-on interviews. We found ways in which services supported young adult carers but, contrary to previous research, receipt of services by the person with care needs was not associated with better reported carer outcomes in our survey. One key reason for this finding was that not enough services were received to meet care needs and alleviate unpaid caring to a level or type compatible with better outcomes. The wider economic and political context of our study, during fiscal austerity and cuts to social care budgets, and the particular circumstances of young adult carers may offer further explanations.

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The Effect of Medicaid Expansion on Caregiver's Quality of Life

Medicaid expansion has been shown to improve access to care, health, and finances in general populations. Until now no studies have considered how Medicaid expansion may affect informal family caregivers who are the backbone of the long term supports and services infrastructure. Family caregivers provide substantial cost savings to Medicare and Medicaid. Yet, they sustain financial, physical, and mental health strain from their caregiving role which Medicaid expansion may offset. This study evaluated the impact of Medicaid expansion on caregivers' mental health using 2015–2018 data from the Behavioral Risk Factor Surveillance System. After adjusting for demographics, socioeconomic status, and health behaviors, caregivers in Medicaid expansion states had a significantly fewer number of poor mental health days in the previous month than caregivers in non-expansion states (ß = −0.528, CI −1.019, −0.036, p <.01). Study findings indicate that Medicaid expansion state status was protective for caregiver's mental health.

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Effect of Informational Support on Anxiety in Family Caregivers of Patients with Hemiplegic Stroke

Background: Brain stroke causes physical and mental disabilities, as well as dependence on one's family. In such cases, the families suffer from severe crisis and anxiety due to the unexpected incidence of the disease and unawareness of the associated consequences.; Objectives: The aim of the present study was to evaluate the effectiveness of informational support on the level of anxiety in family caregivers of hemiplegic stroke patients.; Methods: This quasi-experimental study was performed on 78 family caregivers of hemiplegic stroke patients admitted to the Neurology Department of Farshchian Hospital in Hamadan, Iran, over 8 months. The subjects were selected through convenience sampling method and divided into two groups of intervention (n = 40) and control (n = 38). Intervention started from the third day of hospitalization and continued until the eleventh day. During this period, information about the ward, equipment, patient status, and care procedure at home, was provided for the intervention group individually and in groups. On the other hand, the control group only received the routine care. Anxiety level of caregivers was measured through the Spielberger scale both before and after the intervention. Data analysis was performed in SPSS software (version 16).; Results: Based on the results, both groups were similar in terms of demographic variables (P > 0.05). Moreover, there was no significant difference between the two groups regarding the mean level of state and trait anxiety before the intervention (P > 0.05). However, after intervention, the mean level of state and trait anxiety of the intervention group showed a significant reduction in comparison to that of the control group (P < 0.05).; Conclusions: According to the findings, it can be concluded that informational support is effective in reducing the state and trait anxiety in family caregivers of stroke patients. Therefore, it is suggested that nurses consider informational support as an important nursing intervention during hospitalization. 

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The effect of a purpose-built memory support unit on the transition to high level dementia care; Perspectives of multiple participants

Australia faces the challenge of an ageing population. The incidence of people with dementia unable to live in the community is expected to rise leading to demands on care facilities to provide specialised care. This paper reports on the effect a purpose-built Memory Support Unit has on multiple participants during the transition from home, or an aged care residence, to high level dementia care. The aim of this research was to understand the effect of a purpose-built Memory Support Unit on the experiences of those with dementia who are transitioning into this environment, their family or carers and staff. A qualitative descriptive methodology was adopted to frame the research. Face-to-face interviews were conducted with nine family members, two residents and three Registered Nurses. A purpose-built Memory Support Unit may have a positive effect on the older person, their families, carers and staff, thus improving the experience of all participants as the older person transitions into dementia care. Optimising design of the physical environment may foster a more person-centered orientation to care and positive outcomes for residents, family members or carers and staff. Purpose built environments may have a meaningful subjective effect on the wellbeing of older people during the transition from their residence to permanent dementia care, their family, carers and staff. It is recommended that architects, funding agencies and aged care providers engage with the growing body of evidence that purpose-built environments, such as the Memory Support Unit, to enhance the quality of the experience of those transitioning to high level dementia care, their family or carers and staff.

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The effect of a comprehensive mobile application program (CMAP) for family caregivers of home‐dwelling patients with dementia: A preliminary research

Aim: The purpose of this study was to evaluate the effect of a comprehensive mobile application program in managing behavior and psychological symptoms of home‐dwelling patients with dementia in South Korea. Methods: A nonequivalent control group pretest‐posttest design was conducted. A total of 26 family caregivers participated in this study. The application program consists of understanding of dementia, interventions, communication skills, coping methods, and bulletin boards. Data collection was performed from July 9, 2018, to October 4, 2018. Family caregivers' fatigue, sleep, and burden and patients with behavioral and psychological symptoms of dementia were measured. For data analysis, descriptive statistics, independent t tests, Mann–Whitney U test, repeated measures analysis of variance, and Friedman test were used. Results: The application program offered environmental management in an intervention using communication skills and coping methods, depending on the behavioral and psychological symptom type. The results showed significant differences between the two groups in family caregivers' fatigue (F = 11.24, p =.003) and burden (χ2 = 10.55, p =.005). Conclusion: The findings showed the application program improved family caregivers' fatigue and burden. It also suggested there is a need to develop a wandering persons location program to improve family caregivers' stress and patients' behavioral problems in future studies.

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The Effect of 20-Minute Mindful Breathing on the Perception of Suffering and Changes in Bispectral Index Score (BIS) in Palliative Care Informal Caregivers: A Randomized Controlled Study

Informal caregivers are at risk of being overwhelmed by various sources of suffering while caring for their significant others. It is, therefore, important for caregivers to take care of themselves. In the self-care context, mindfulness has the potential to reduce caregiver suffering. We studied the effect of a single session of 20-minute mindful breathing on the perceived level of suffering, together with the changes in bispectral index score (BIS) among palliative care informal caregivers. This was a randomized controlled study conducted at the University of Malaya Medical Centre, Malaysia. Forty adult palliative care informal caregivers were recruited and randomly assigned to either 20-minute mindful breathing or 20-minute supportive listening. The changes in perceived suffering and BIS were measured preintervention and postintervention. The reduction in suffering score in the intervention group was significantly more than the control group at minute 20 (U = 124.0, n1 = n2 = 20, mean rank1 = 24.30, mean rank2 = 16.70, z = −2.095, P =.036). The reduction in BIS in the intervention group was also significantly greater than the control group at minute 20 (U = 19.5, n1 = n2 = 20, mean rank1 = 29.52, mean rank2 = 11.48, z = −4.900, P <.0001). Twenty minutes of mindful breathing was more efficacious than 20 minutes of supportive listening in the reduction in suffering among palliative care informal caregivers.

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Evaluation of a Collaborative Advance Care Planning Intervention among Older Adult Home Health Patients and Their Caregivers

Background: Caregivers are decision stakeholders; yet, few interventions have been developed to help patients and caregivers collaborate on advance care planning (ACP). Objective: To evaluate a theory-based ACP pilot intervention, Deciding Together, to improve decisional quality, readiness, collaboration, and concordance in ACP decisions for older adult home health (HH) patients and caregivers. Design: A one-group, pre- and posttest study using matched questionnaires was conducted. The intervention consisted of a clinical vignette, theoretically guided conversation prompts, and a shared decision-making activity. Setting/Subjects:N = 36 participants (n = 18 HH patients; n = 18 family and nonfamily caregivers) were purposively recruited from a HH agency to participate in the intervention at patients' homes. Measurements: Demographic and baseline measures were collected for relationship quality, health status, and previous ACP engagement. Outcome measures included perceptions of collaboration, readiness for ACP, concordance in life-sustaining treatment preferences (cardiopulmonary resuscitation, antibiotics, artificial nutrition and hydration, and mechanical ventilation), and decisional conflict. Descriptive statistics, Cohen's κ coefficients, paired t tests, McNemar's tests, and Wilcoxon signed-rank tests (and effect size estimates, r = z/√N) were calculated using R-3.5.1 (p < 0.05). Single value imputation was used for missing values. Results: While no significant differences were found for perceptions of collaboration, and readiness for ACP, patients (r = 0.38, p = 0.02) and caregivers (r = 0.38, p = 0.02) had reduced decisional conflict at posttest. Patients' and caregivers' agreement increased by 27.7% for an item assessing patients' preference for artificial nutrition and hydration (p = 0.03). Conclusions: This study suggests that collaborative ACP decision making may improve decisional conflict for older adult HH patients and their caregivers.

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Development and Field Testing of a Long-Term Care Decision Aid Website for Older Adults: Engaging Patients and Caregivers in User-Centered Design

Background and Objectives Decisions about long-term care and financing can be difficult to comprehend, consider, and communicate. In a previous needs assessment, families in rural areas requested a patient-facing website; however, questions arose about the acceptability of an online tool for older adults. This study engaged older adults and family caregivers in (a) designing and refining an interactive, tailored decision aid website, and (b) field testing its utility, feasibility, and acceptability. Research Design and Methods Based on formative work, the research team engaged families in designing and iteratively revising paper drafts, then programmed a tailored website. The field test used the ThinkAloud approach and pre-/postquestionnaires to assess participants' knowledge, decisional conflict, usage, and acceptability ratings. Results Forty-five older adults, family members, and stakeholders codesigned and tested the decision aid, yielding four decision-making steps: Get the Facts , What Matters Most, Consider Your Resources, and Make an Action Plan. User-based design and iterative storyboarding enhanced the content, personal decision-making activities, and user-generated resources. Field-testing participants scored 83.3% correct on knowledge items and reported moderate/low decisional conflict. All (100%) were able to use the website, spent an average of 26.3 min, and provided an average 87.5% acceptability rating. Discussion and Implications A decision aid website can educate and support older adults and their family members in beginning a long-term care plan. Codesign and in-depth interviews improved usability, and lessons learned may guide the development of other aging decision aid websites. 

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A country-wide support network for people with memory-related diseases and their families

Memory-related diseases often have a profound effect not only on the lives of individual people, but also on the lives of their families and others close to them. In this article, we introduce one national solution developed to help people who encounter such a situation. Regional ‘Muistiluotsi’ (memory pilot) centres provide expert assistance and support to people with memory-related diseases and their families. With its population of 5.5 million people, Finland has an estimated 193,000 people with a memory-related disease. Annually, approximately 14,500 people receive the diagnosis....

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Cost-effectiveness analysis of systematic fast-track transition from oncological treatment to specialised palliative care at home for patients and their caregivers: the DOMUS trial

Background: While hospitals remain the most common place of death in many western countries, specialised palliative care (SPC) at home is an alternative to improve the quality of life for patients with incurable cancer. We evaluated the cost-effectiveness of a systematic fast-track transition process from oncological treatment to SPC enriched with a psychological intervention at home for patients with incurable cancer and their caregivers. Methods: A full economic evaluation with a time horizon of six months was performed from a societal perspective within a randomised controlled trial, the DOMUS trial (Clinicaltrials.gov: NCT01885637). The primary outcome of the health economic analysis was a incremental cost-effectiveness ratio (ICER), which is obtained by comparing costs required per gain in Quality-Adjusted Life Years (QALY). The costs included primary and secondary healthcare costs, cost of intervention and informal care from caregivers. Public transfers were analysed in seperate analysis. QALYs were measured using EORTC QLQ-C30 for patients and SF-36 for caregivers. Bootstrap simulations were performed to obtain the ICER estimate. Results: In total, 321 patients (162 in intervention group, 159 in control group) and 235 caregivers (126 in intervention group, 109 in control group) completed the study. The intervention resulted in significantly higher QALYs for patients when compared to usual care (p-value = 0.026), while being more expensive as well. In the 6 months observation period, the average incremental cost of intervention compared to usual care was €2015 per patient (p value < 0.000). The mean incremental gain was 0.01678 QALY (p-value = 0.026). Thereby, the ICER was €118,292/QALY when adjusting for baseline costs and quality of life. For the caregivers, we found no significant differences in QALYs between the intervention and control group (p-value = 0.630). At a willingness to pay of €80,000 per QALY, the probability that the intervention is cost-effective lies at 15% in the base case scenario. Conclusion: This model of fast-track SPC enriched with a psychological intervention yields better QALYs than usual care with a large increase in costs. Trial registration: The trial was prospectively registered 25.6.2013. Clinicaltrials.gov Identifier: NCT01885637. 

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Care of family caregivers of persons with dementia (CaFCa) through a tailor-made mobile app: study protocol of a complex intervention study

Background: Globally, family members account for the main source of caregiving of persons with dementia living at home. Providing care to family members with dementia often has negative health consequences for caregivers such as stress, depression and low quality of life. Yet, formal support for family caregivers (FCs) is limited. Telehealth technology has the potential to provide health care and social support to FCs. This study aims to assess the effectiveness of providing support by healthcare professionals (HPs) through a mobile app in reducing stress, depressive symptoms and loneliness, and improving mental health and quality of life of FCs of persons with dementia. Methods: Using a pragmatic intervention design, this study will use pre- and post-intervention assessment to evaluate the effectiveness of the proposed intervention in a sample of 78 FCs of persons with dementia (PWD). The intervention will be implemented by approximately 5 HPs specialized in dementia care based in the municipalities in Sweden. The main thrust of the intervention is to provide professional support, with help of an interactive mobile app, to family members in their caregiving role for PWDs. Qualitative interviews with HPs and FCs form the groundwork of the development of the mobile app. By using the app on smart phone or tablet, the FC, in groups of 8-10, will communicate with peers and a HP exchanging ideas on how to deal with PWD's behavioral and cognitive changes and get support. They will also be able to discuss stressful events and access mindfulness exercises focused on themselves. Quantitative data will be collected before and at three time points after the 8-week intervention to assess changes in the health outcomes of the FCs. In-depth interviews will be conducted after the intervention to capture the experiences of FCs and HPs regarding the ease of use and acceptability of the app.Discussion: This tailor-made mobile app has the high potential to be a practical platform for supporting FCs to alleviate stress and improve mental health irrespective of distance to the nearest health care or social service center.Trial Registration: ISRCTN, ISRCTN46137262 . Registered 10 October 2019.

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The Care Ecosystem: Promoting self-efficacy among dementia family caregivers

Objectives: To illustrate specific psychosocial interventions aimed at improving self-efficacy among family caregivers enrolled in the Care Ecosystem, a model of navigated care designed to support persons with dementia and their primary caregivers. Enrolled family caregivers work with unlicensed care team navigators who are trained in dementia care and provide information, linkages to community resources, and emotional support by phone and email. Method: We conducted focus groups and interviews with the care team navigators to identify the approaches they used to target caregiver self-efficacy. We assessed mean self-efficacy scores in a sample of 780 family caregivers and selected three exemplary cases in which the caregivers had low self-efficacy scores at baseline with significantly higher scores after six months of participation in the Care Ecosystem intervention. Results: Multiple psychosocial strategies were utilized by care team navigators working with patients with dementia and their family caregivers. Using thematic coding we identified three categories of Care Team Navigator intervention: emotional, informational, and instrumental support. These are consistent with a psychosocial approach to building self-efficacy. Discussion: Self-efficacy represents a family caregiver's knowledge and preparedness in managing the challenges of care. Psychosocial support shows benefit in improving caregiver self-efficacy that in turn, may positively influence caregiver health and well-being. The findings in this manuscript demonstrate how a model of navigated care can positively impact self-efficacy among dementia family caregivers.

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Building Resources in Caregivers: Feasibility of a Brief Writing Intervention to Increase Benefit Finding in Caregivers

The Building Resources in Caregivers (BRiC) is a pilot feasibility trial that compared the effects of a 2‐week benefit finding writing expressive intervention to a control intervention, who wrote about the weather. Caregivers completed primary (benefit finding) and secondary (quality of life, depression and anxiety) outcome measures at pre (t1), immediately post‐test (t2) and 1 month later (t3). They also completed measures relating to trial feasibility, difficulty, and acceptance. Using complete case analysis only, analysis revealed no effect of the intervention for primary or secondary outcomes. Despite this, there were no differences between the intervention and control groups on key feasibility measures. Caregivers in the control condition were less likely to recommend this to other caregivers. Moreover, qualitative commentary provided by caregivers suggested that not everyone enjoyed the writing, some found it stressful, offering up some explanation for our findings. Our pilot trial suggests that any future benefit‐finding writing intervention would require several procedure modifications including tailoring to a specific cohort of caregivers, in particular those who like writing, before it has some utility as a psychosocial intervention. 

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Behavioural activation for family dementia caregivers: A systematic review and meta-analysis

• BA had a moderate effect on reducing depression in family dementia caregivers. • Other psychological and cardiovascular health can be improved by BA. • Maintaining a log and subsequent checks might enhance the effectiveness of BA. • More studies of BA are needed in family dementia caregivers. 

The current study aims to investigate the effectiveness of behavioral activation (BA) for family dementia caregivers. A systematic literature search was conducted through PubMed, Medline, CINAHL, Cochrane, Embase and PsycINFO for studies published from March 1988 to September 2019. Standardized mean differences (SMDs) were combined to synthesize pooled effect measures using random effects. The review was based on ten randomized controlled trials. Depression was significantly reduced after participants received BA (n = 9; 786 participants; SMD = −0.69; 95% CI: −1.12 to −0.25; p = 0.002). BA also has a positive impact on other areas of psychological health (e.g., self-efficacy, anxiety, and distress) and physical health (e.g., interleukin-6) in family dementia caregivers. In conclusion, BA not only has a moderate effect on reducing depression but also has the potential to improve other areas of psychological and cardiovascular health in family caregivers. However, more interventional studies of BA for family dementia caregivers are needed.

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Behavioural Activation for Depression in Informal Caregivers: A Systematic Review and Meta-Analysis of Randomised Controlled Clinical Trials

Background: Carers experience significant physical and psychological burden and are at increased risk of experiencing clinical depression. Although several psychological treatments have been shown to be effective for preventing and treating depression in carers, most are complex, costly, and not easily accessible to family carers. In this paper, we review evidence of effectiveness of Behavioural Activation (BA) for depressive symptoms in informal caregivers and report on its quality. Methods: We searched MEDLINE, EMBASE, PsycINFO, CINAHL, CENTRAL and Online trial registers for randomised controlled clinical trials of BA for carers. Results: Twelve trials met inclusion criteria and eleven were included in the meta-analyses. BA reduced depressive symptoms for carers (standardised mean difference (SMD) -0.68; confidence interval (CI) -1.14 to -0.22) at post intervention (4-14 weeks) and in the long term (l year; SMD -0.99; CI -1.26 to -0.71). BA decreased risk of a diagnosis of major depression (Odds Ratio 0.35; CI 0.19 to 0.67), and reduced negative affect (SMD -0.53; 95% CI -0.83 to -0.23), and caregiver burden (SMD -0.32; CI -0.55 to -0.09) at post-treatment. Quality of evidence was moderate and there was no evidence of publication bias. Limitations: There was high heterogeneity in the studies included. Conclusion: BA is effective in reducing depressive symptoms post-treatment and long-term (1 year) and decreases odds of a diagnosis of major depression in informal caregivers. Our review provides further evidence that BA is an effective psychological intervention, which is potentially highly scalable across many settings, populations and cultures (Registration: PROSPERO-CRD42019138860). 

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The awareness, visibility and support for young carers across Europe: a Delphi study

Background: Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exploring existing successful strategies to support YCs. Compared to YCs, even less is known about adolescent young carers (AYCs), a group that is in a critical life transition phase. The study forms part of an EU Horizon 2020 funded research project on AYCs aged 15-17 years old. Methods: A two-round Delphi study was conducted with 66 experts on YCs from 10 European countries. Topics included: (i) visibility and awareness-raising of YCs at local, regional, and national levels, (ii) current interventions to support YCs, and (iii) future strategies to support YCs. Results: Experts reported a lack of visibility and awareness about YCs in general, and AYCs in particular. Although awareness is slowly increasing in most countries, with the UK ranked highest, experts acknowledged that it remains challenging to identify YCs in many countries. Furthermore, the level and type of support available for YCs differs, with most countries mainly offering support on a local level. Diverse views were expressed regarding future strategies to support YCs. Experts highlighted the importance of specific legislation to formalise the rights of YCs, and the issue of whether young people should be safeguarded from caregiving or if this should be considered part of regular family life. They also emphasised the relevance of available integrated support services for YCs, including schools, family, health and social care. Conclusions: In most European countries, there is a lack of awareness and visibility on YCs. Identification of YCs is a crucial first step and there is need for a common definition of YCs, together with greater opportunities for young adults to identify themselves as YCs.

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Assessing a WeChat-Based Integrative Family Intervention (WIFI) for Schizophrenia: Protocol for a Stepped-Wedge Cluster Randomized Trial

Background: Schizophrenia is a persistent and debilitating mental illness, and its prognosis depends largely on supportive care and systematic treatment. In developing countries like China, families constitute the major caregiving force for schizophrenia and are faced with many challenges, such as lack of knowledge, skills, and resources. The approach to support family caregiving in an accessible, affordable, feasible, and cost-effective way remains unclear. The wide-spread use of WeChat provides a promising and cost-effective medium for support.; Objective: We aim to present a protocol for assessing a WeChat-based integrative family intervention (WIFI) to support family caregiving for schizophrenia.; Methods: We will develop a WIFI program that includes the following three core components: (1) psychoeducation (WeChat official account), (2) peer support (WeChat chat group), and (3) professional support (WeChat video chat). A rigorous stepped-wedge cluster randomized trial will be used to evaluate the implementation, effectiveness, and cost of the WIFI program. The WIFI program will be implemented in 12 communities affiliated with Changsha Psychiatric Hospital through the free medicine delivery process in the 686 Program. The 12 communities will be randomized to one of four fixed sequences every 2 months during an 8-month intervention period in four clusters of three communities each. Outcomes will be assessed for both family caregivers and people with schizophrenia. Family caregivers will be assessed for their knowledge and skills about caregiving, social support, coping, perceived stigma, caregiver burden, family functioning, positive feelings, and psychological distress. People with schizophrenia will be assessed for their symptoms, functioning, quality of life, recovery, and rehospitalization. Cost data, such as intervention costs, health care utilization costs, and costs associated with lost productivity, will be collected. Moreover, we will collect process data, including fidelity and quality of program implementation, as well as user attitude data. Treatment effects will be estimated using generalized linear maximum likelihood mixed modeling with clusters as a random effect and time as a fixed effect. Cost-effectiveness analysis will be performed from the societal perspective using incremental cost-effectiveness ratios. Qualitative analysis will use the grounded theory approach and immersion-crystallization process.; Results: The study was funded in August 2018 and approved by the institutional review board on January 15, 2019. Preliminary baseline data collection was conducted in May 2019 and completed in September 2019. The WIFI program is expected to start in September 2020.; Conclusions: This is the first study to assess a WeChat-based mHealth intervention to support family caregiving for schizophrenia in China. The innovative study will contribute to the development of a more cost-effective and evidence-based family management model in the community for people with schizophrenia, and the approach could potentially be integrated into national policy and adapted for use in other populations.; Trial Registration: ClinicalTrials.gov NCT04393896; https://clinicaltrials.gov/ct2/show/NCT04393896.; International Registered Report Identifier (irrid): PRR1-10.2196/18538. (©Yu Yu, Tongxin Li, Shijun Xi, Yilu Li, Xi Xiao, Min Yang, Xiaoping Ge, Shuiyuan Xiao, Jacob Tebes. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 25.08.2020.)

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Applying Relational Turbulence Theory to Adult Caregiving Relationships

Although the quality of the relationship between caregivers and care recipients predicts the well-being of both people, gaps exist in understanding the interpersonal dynamics of adult caregiving. We introduce relational turbulence theory as a conceptual framework for understanding how caregivers and care recipients relate to each other. We searched for research on relational turbulence theory as well as research on the relationships of adult care partners. Then, we integrated the two bodies of work. Our review suggests initial support for the theory's three central tenets: (a) transitions, including the transition to caregiving, are key periods within relationships; (b) relational uncertainty and interdependence are relationship parameters that complicate relating during transitions; and (c) relational turbulence predicts outcomes. Recommendations for practice include (a) helping care partners focus on relationship continuity, (b) gearing clinical services toward both people, (c) educating them about relational uncertainty and interdependence, and (d) teaching them communication strategies for diminishing relational turbulence. Making care partners aware of interpersonal challenges may bolster relationship satisfaction. 

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Introducing the Video call to facilitate the communication between health care providers and families of patients in the intensive care unit during COVID-19 pandemia

Effective communication improves family satisfaction, trust in ICU physicians, clinical decision-making and psychological well-being being of family members (Lilly et al., 2000; Wood, 2018). Complete isolation due to the COVID-19 pandemic restrictions disables clinician-family meetings and the limitations of hospital visitation policies do not permit caregivers to be near their loved ones, with the risk of leaving them without any form of trusted representation and advocacy. Always be open minded to new ways of acting your mission.

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A Systematic Review of Home-Setting Psychoeducation Interventions for Behavioral Changes in Dementia: Some Lessons for the COVID-19 Pandemic and Post-Pandemic Assistance

Background Impacts of social isolation measures imposed by COVID-19 Pandemic on mental health and quality of life of older adults living with dementia and their caregivers remain unexplored. Studies have shown that psychoeducational and psychosocial interventions can manage behavioral and psychological symptoms in dementia (BPSD) and reduce the emotional burden on family members when applied in home-setting scenarios. Method a comprehensive systematic review of useful interventions for easing the BPSD burden in patients with dementia (PwD) and their caregivers in the context of COVID-19 quarantine was performed from January 2010 to March 2020. Results From a total of 187 articles retrieved from electronic databases (MEDLINE, LILACS, Cochrane and SCOPUS), 43 studies were eligible for this review. Most of the psychosocial and psychoeducational interventions described were person-centered strategies based on the cognitive-behavioral approach or informational tools to enhance care providers' knowledge of dementia. Most studies achieved successful results in handling BPSD and mood-anxiety symptoms of care providers, contributing to an overall improvement in dyad life quality. Conclusion Evidence from the last few years suggest that low-cost techniques, tailored to the dyad well-being, with increasing use of technology through friendly online platforms and application robots, can be an alternative to conventional assistance during COVID-19 Pandemic. Nevertheless, the world's current experience regarding the duration of the COVID-19 Pandemic and its effects on the cognition, behavior, and life quality of PwD will demand research on preventive and protective factors of dementia and the pursue of efficient interventions in different scenarios.

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Guidance for those who provide unpaid care to friends or family

Guidance for anyone who cares, unpaid, for a friend or family member who cannot cope without their support. This may be because they have a lifelong condition, illness, disability, serious injury, mental health condition or an addiction. 

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Caring for loved ones with cancer during the COVID-19 pandemic: A double hit risk for social isolation and need for action

Key Points

  • With social distancing and visitors limited in healthcare, caregivers of cancer patients are at increased risk for isolation.
  • Caregivers may have learned particular lessons that can foster resilience from isolation.
  • Telehealth and phone check‐ins offer opportunities to support caregivers.
  • Policy initiatives have the potential to continue support for caregivers post‐COVID.
  • Supporting caregivers is a community effort, and its importance should not be forgotten post‐COVID.
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Advance care planning information intervention for persons with mild dementia and their family caregivers: Impact on end-of-life care decision conflicts

Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest–posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p =.008 and p <.001, respectively), knowledge of ACP (both p <.001), and significant reductions in decisional conflicts (both p <.001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p =.001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care. 

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Adapting a Palliative Care Literacy Intervention for Use in Israel (GP787)

Objectives Describe growth of palliative care in Israel and the need to increased palliative care literacy among patients and family caregivers. Describe the process of adapting the Managing Cancer Care intervention for use in Israel. Summarize recommended expert panel, patient, and family caregiver edits to the Managing Cancer Care intervention. Importance. Although palliative care (PC) is growing in Israel, few receive PC due to lack of knowledge and availability of services. Increased PC literacy and use is needed to improve health outcomes. Objective(s). Adapt a PC-focused cancer self-management intervention to improve PC literacy and use in Israel. Method(s). Managing Cancer Care (MCC) consists of two interventions, MCC-PTfor patients and MCCCGfor family caregivers. Both have improved knowledge of PC and its integration into cancer self-management among users in Connecticut. To adapt MCC for use in Israel, we professionally translated MCC from English to Hebrew. An expert panel of Israeli clinicians (n¼3) edited modules for cultural relevance. We conducted cognitive interviews with patients and family caregivers at an oncology center in northern Israel to inform further edits. Inclusion criteria were patients and family caregivers managing Stage III/IV breast cancer, aged 18+, Hebrew- or English-speaking, and receiving any type of treatment. Participants provided demographic/clinical information and received the appropriate version of MCC. Interviews on intervention content and format occurred 2-4 weeks later. We analyzed interview data using content analysis. Results. Following expert review, we revised MCC content specific to the U.S. health care system (e.g., hospice benefit) and American culture/language (e.g., no Hebrew word for ''multidisciplinary''). Patients' (n¼13) mean age was 49 (range 36-69). 85% had Stage IV disease with an average 6 years since diagnosis. Caregivers' (n¼10) mean age was 57 (range 47-66) with 60% male. 23% of patients and 30% of caregivers correctly defined PC. 30% of patients had seen a PC physician. MCC was reported by patients and caregivers as topically relevant (80%,70%), attractive (70%,80%), and culturally appropriate, and suggested more Israel-specific content on PC resources. Conclusion(s). MCC appears acceptable to Israeli users and warrants pilot-testing. Impact. PC infrastructure in Israel may grow in response to increased PC literacy and requests for PC. We are collaborating with Israel's Ministry of Health to further study objectives.

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Worst hit: dementia during coronavirus

The coronavirus pandemic is having a devastating impact around the world. In the UK, people affected by dementia have been hardest hit and our fragmented social care system has been exposed for all to see.

Alzheimer’s Society is the UK’s leading dementia charity, and in this report we bring together evidence from a wide range of sources to shine a light on the impact of coronavirus disease 2019 (COVID-19) on people who have dementia and those who care for them

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Value and learning from carer involvement in a cluster randomised controlled trial and process evaluation - Organising Support for Carers of Stroke Survivors (OSCARSS)

Background: Patient, Carer and Public Involvement (PCPI) should be embedded in health care research. Delivering PCPI can be challenging, but even when PCPI is carried out it is rarely reported resulting in lost opportunities for learning. This paper aims to describe PCPI in the OSCARSS study, a pragmatic-cluster randomised controlled trial with an embedded economic and process evaluation. Methods: A carer research user group (RUG) co-developed OSCARSS to evaluate how to best deliver support to caregivers of stroke survivors. The PCPI activity involved regular meetings and preparatory work, from the initial conceptualisation of the study through to dissemination. Written reports, structured group discussions and individual interviews were carried out with the RUG and researchers to capture the added value and learning. This paper was co-authored by two of the RUG members with contributions from the wider RUG and researchers. Results: The core six members of the caregiver RUG attended the majority of the meetings alongside three researchers, one of whom was the co-chief investigator. PCPI was instrumental in changing many aspects of the research protocol, design and delivery and contributed to dissemination and sharing of good practice. There were challenges due to the emotional toll when PCPI members shared their stories and the extensive time commitment. Positive experiences of learning and fulfilment were reported by the individual researchers and PCPI members. Wider organisational administrative and financial support facilitated the PCPI. The researchers’ existing positive regard for PCPI and the clear focus of the group were key to the successful co-design of this research. Conclusions: The value and learning from the PCPI collaborative work with the researchers was of benefit to the study and the individuals involved. Specific PCPI influences were a challenge to pinpoint as successful co-design meant the researchers’ and carers’ contributions were intertwined and decision-making shared.

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Analysis of the Components of a Cognitive-Behavioral Intervention for the prevention of Depression Administered via Conference Call to Nonprofessional Caregivers: A Randomized Controlled Trial

Effective and accessible interventions for indicated prevention of depression are necessary and lacking, especially for informal caregivers. Although telephone-based interventions could increase the accessibility for caregivers, randomized controlled trials are scarce, with no examination of prevention to date. Moreover, the efficacy of specific therapeutic components in preventive cognitive-behavioral programs is unknown. The main objective of this study was to evaluate the efficacy of a telephone-administered psychological preventive intervention in informal caregivers with high depressive symptoms. A total of 219 caregivers were randomized to a cognitive-behavioral conference call intervention (CBCC, n = 69), a behavioral-activation conference call intervention (BACC, n = 70), or a usual care control group (CG, n = 80). Both interventions consisted of five 90-minute group sessions. At the post-intervention, incidence of depression was lower in CBCC and BACC compared to CG (1.5% and 1.4% vs. 8.8%). Relative risk was 0.17 for the CBCC and 0.16 for the BACC, and the number-needed-to-treat was 14 in both groups. Depressive symptoms were significantly lower in BACC and BACC groups compared to CG (d = 1.16 and 1.29), with no significant differences between CBCC and BACC groups. The conference call intervention was effective in preventing depression and the behavioral-activation component (BACC) was comparable to the CBCC intervention.

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Translating an Evidence-based Multicomponent Intervention for Older Adults With Dementia and Caregivers

Background and Objectives Effective community-based programs to maintain health and well-being of adults with dementia are needed. This article describes the translation, implementation, and effectiveness of a multicomponent exercise plus behavioral/psychosocial intervention (Reducing Disability in Alzheimer's Disease-NorthWest [RDAD-NW]) conducted by staff in regional Area Agencies on Aging (AAAs). Research Design and Methods Staggered multiple baseline design was used; 10 AAAs, 20 case managers, and 255 community-residing persons with dementia (PWDs), and family caregivers were enrolled. RDAD-NW was conducted in-home over 6 weeks with aerobic/endurance, strength, and balance/flexibility exercises, dementia education, training to increase pleasant events, and activator-behavior-consequence problem-solving approach. Outcomes included case manager treatment fidelity, and caregiver/PWD physical activity, restricted activity days, physical functioning, quality of life, and affect. Results RDAD-NW was successfully translated and implemented by AAA agency staff through their usual service provision mechanisms. Staff responded positively and delivered the program with a high degree of fidelity. Caregiver/PWD dyads also responded favorably engaging in both exercise and behavioral/psychosocial portions of the program. A total of 207 dyads (81%) completed the intervention and 140 (55%) completed the 13-month follow-up. PWD physical activity increased significantly pre- to posttreatment (p < .001, ES = .54), and 13 months (p < .01, ES = .21). Quality of life of PWD increased significantly pre- to posttreatment (p < .001, ES = .29); caregiver depression improved pre- to posttreatment (p = .01, ES = −.18). Discussion and Implications RDAD-NW was successfully translated and implemented by AAA case managers and resulted in increased physical activity and improved behavioral and emotional outcomes of caregiver/PWDs. Results support continued dissemination and implementation of RDAD-NW.

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Support, interventions and outcomes for families/carers of people with borderline personality disorder: A systematic review

It is clear from existent literature that families and carers of relatives and friends with borderline personality disorder (BPD) experience high levels of burden. Whilst family interventions are considered vital to improving the outcomes of those with a range of mental health difficulties, there has been limited development of direct interventions for carers of people with BPD, despite a high level of need. This systematic review aimed to appraise and synthesize the existing research evidence for interventions for carers of people with BPD. Ten studies were included that were directly related to six interventions for families and carers of people with personality disorder. The findings of these studies, whilst limited, do provide some initial evidence that interventions for carers may lead to significant outcomes for the participants, particularly in improving carer well-being and reducing carer burden. 

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Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia

Background: Since people with advanced dementia are usually not able to make complex decisions, it is usually the family caregivers, as proxies, who have to decide on treatments and their termination. However, these decisions are difficult for the caregivers to make, as they are often inadequately informed and cannot properly assess the consequences; moreover, they are concerned about harming the sick person. We aimed to first develop an informative booklet about palliative care issues for caregivers of people with advanced dementia. Secondly, we aimed to investigate a change in family caregivers' knowledge regarding palliative care issues and caregivers' involvement in medical and care decisions before and after studying this booklet. Methods: A first version of the booklet was drafted by an experienced psychiatrist and palliative care specialist based on existing booklets and guidelines; necessary cultural adaptions were taken into consideration. A nominal group process was conducted to develop the informative guide. In order to investigate the acceptance of the booklet and the possibility to implement it, 38 patient-caregiver dyads were recruited, and caregivers were interviewed both before receiving the booklet and after 3 months of receiving the booklet. Results: Experts from various disciplines collaborated on a German booklet for family caregivers of people with advanced dementia as an information aid regarding issues of palliative care. The subsequent test showed that all caregivers had experienced a personal benefit from the booklet. Caregivers had a significant gain of knowledge after provision of the booklet. A large proportion of caregivers who had not previously considered and/or discussed medical topics reported that they had done so within 3 months after obtaining the booklet, or planned to do so in the near future. Conclusions: The caregivers valued the comprehensible, concise and well-structured information guide on palliative care issues in advanced dementia. They agreed it increases knowledge and prompts decision making and therefore should be developed in many languages and disseminated among family caregivers of people with dementia. Trial registration: Clinicaltrial.gov, NCT03548142. Retrospectively registered 7 June 2018. 

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Action Research as a Method to Find Solutions for the Burden of Caregiving at Hospital Discharge

The role played by family caregivers in delivering long-term care is crucial: they enhance the quality of care perceived by the patients and support the shift to out-of-hospital care. However, taking care of a relative entails a huge burden that usually begins with the patient’s hospital discharge and may mean that caregivers become patients in need of care as well. Owing to socio-demographic trends, informal caregiving is the most important source of care in community settings; hence targeting the caregivers’ burden properly is crucial. This study explores how action research (AR) can be used to develop new hospital practices to manage the burden borne by family caregivers when patients are discharged from hospital. The 7-month-long action research reported in this paper consisted of three stages (burden identification, burden sharing, and burden management) and it was conducted in a teaching hospital in Rome (Italy). Both quantitative (surveys) and qualitative (focus groups and simulation sessions) techniques were used to engage participants. The AR demonstrates that there is a feasible way in which hospital managers can address proactively the caregivers’ needs in the hospital discharge process, to the advantage of the patients and the entire community.

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Massive Open Online Courses: enhancing caregiver education and support about dementia care towards and at end of life

As the ageing population grows globally, the need for informal care-usually provided by family and friends-will continue to increase. Numbers of people with dementia also continue to rise, and much of their care will be provided by relatives. As such, more people who may themselves be older, will take on such caring roles. Consequently, more carers are likely to have education and support needs. Amidst government recognition of the need to provide good quality, person-centred education and support to carers, there are tensions between the potential for such provision to be resource intensive and whether existing services have the capacity to meet the needs of carers. Massive Open Online Courses (MOOCs) are a resource with scope to meet some of these educational and support needs. MOOCs enable flexible learning, are often free, and can be accessed anywhere in the world. Providing supportive dementia care requires carers to have an understanding of the condition, assistance to cope with the responsibilities of caring, and recognition of the importance of their own health and wellbeing as well as the person they support. In response to the needs of family carers of people with advancing dementia identified through a 5 year programme of research, we developed a MOOC-dementia care: living well as dementia progresses. This is an accessible source of relevant and engaging information; which enables carers to learn about advancing dementia, consider their own needs and create an interactive global forum of peer support. 

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Digital Mental Health Tools for Caregivers of Older Adults-A Scoping Review

Aim: Informal caregivers have an important role in bridging the gap between the assistance care recipients need and what can be provided by the health care systems across Europe. The burden of the caregiving role places a significant threat to caregiver health, and the vast majority of caregiver's report stress and emotional strain, depression, and increased rates of chronic diseases. In line with this, strengthening the caregiver's mental health is one of the main goals for optimal caregiving. Caregivers already struggle with the demand of their role while coping with health problems, social, family, and work obligations. The solution for the caregiver's mental health needs to be accessible, low cost, and time-effective. This scoping review investigates digital mental health tools available as a mean of supporting the mental health of caregivers. Method: Databases searched include Summon search box, the Cochrane Library, and PubMed. Three groups of keywords were combined: relating to digital mental health interventions for caregivers, digital mental health interventions and stress in elderly care, and digital mental health interventions and burden in elderly care. Results: Caregivers reported that digital mental health tools have an overall positive role in their health. Coping skills, emotion regulation, skill building, and education are found to be important aspects of digital mental health tools. There was a noted lack of digital mental health apps available specifically for the caregiver of older adults. Furthermore, the digital mental health tools, divided into three categories in this review, focused either on building skills or educating caregivers and assisting with the duties rather than the mental health of the caregiver itself. As repeatedly suggested in the reviewed studies, digital mental health interventions overall contribute to reducing the caregiver burden with a limitation of addressing one aspect of caregiver needs -i.e., specific coping skills or education regarding illnesses such as Alzheimer's disease and Dementia. The lack of all-encompassing, data and theory-driven digital mental health tools for addressing and supporting the caregiver's mental health is evident.

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Enhancing primary care support for informal carers: A scoping study with professional stakeholders

Informal carers (i.e. people who provide unpaid care to family and/or friends) are crucial in supporting people with long-term conditions. Caring negatively impacts on carers’ health and experiences of health services. Internationally and nationally, policies, legislation, professional guidance and research advocate for health and care services to do more to support carers. This study explored the views of health and social care providers, commissioners and policy makers about the role and scope for strengthening health service support for carers. Twenty-four semi-structured interviews, with 25 participants were conducted, audio-recorded, transcribed verbatim and analysed by thematic analysis. Three main themes emerged: (a) identifying carers, (b) carer support, and (c) assessing and addressing carer needs. Primary care, and other services, were seen as not doing enough for carers but having an important role in identifying and supporting carers. Two issues with carer identification were described, first people not self-identifying as carers and second most services not being proactive in identifying carers. Participants thought that carer needs should be supported by primary care in collaboration with other health services, social care and the voluntary sector. Concerns were raised about primary care, which is under enormous strain, being asked to take on yet another task. There was a clear message that it was only useful to involve primary care in identifying carers and their needs, if benefit could be achieved through direct benefits such as better provision of support to the carer or indirect benefit such as better recognition of the carer role. This study highlights that more could be done to address carers’ needs through primary care in close collaboration with other health and care services. The findings indicate the need for pilots and experiments to develop the evidence base. Given the crucial importance of carers, such studies should be a high priority. 

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Support for family caregivers: A scoping review of family physician’s perspectives on their role in supporting family caregivers

What is known about this topic Family caregiving has become more onerous in the last two decades.Family physicians have the potential to reach the majority of caregivers throughout the care trajectory.The demand for primary care to support caregivers comes primarily from researchers or advocacy organisations. What this paper adds There is little literature on family physicians’ perspectives on their roles in supporting family caregivers.Collaborative integrated primary care models are recommended as the most feasible model for supporting family caregivers.Research to understand family physicians’ perspectives of their role in supporting family caregivers is warranted.

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Development of a mobile app for family members of Veterans with PTSD: identifying needs and modifiable factors associated with burden, depression, and anxiety

Family members of Veterans with posttraumatic stress disorder (PTSD) face high levels of burden that are poorly addressed by existing mental health services. Widely distributed mobile interventions could play a role in addressing these unmet needs. The purpose of this study was to characterize caregiver burden in those seeking a mobile app for self-management of stress symptoms and to develop a model to guide mobile interventions for family members. Those living with a Veteran with PTSD (n = 212) and interested in using a mobile intervention agreed to participate. The majority reported moderate-to-severe levels of depression (60%) and/or caregiver burden (59%). Relationship quality, communication, and self-efficacy for caregiving were the strongest predictors of negative outcomes (p’s <.001), and qualitative results identified several additional unmet needs (e.g. relationship concerns, safety concerns). This study identifies potential mechanisms by which a mobile app could improve family functioning in the context of PTSD.

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A Randomized Controlled Trial of Emotion Regulation Therapy for Psychologically Distressed Caregivers of Cancer Patients

Background: Previous cognitive behavioral therapies for informal caregivers (ICs) have produced negligible effects. The purpose of this study was to evaluate, in a randomized controlled trial, the efficacy of Emotion Regulation Therapy adapted for caregivers (ERT-C) on psychological and inflammatory outcomes in psychologically distressed ICs and the cancer patients cared for. Methods: A total of 81 ICs with elevated psychological distress were randomly assigned to ERT-C or a waitlist condition and assessed pre-, mid-, and post-treatment. In 52 cases, the patient cared for by the IC was included. Patients did not receive ERT-C. Both the ERT-C and waitlist groups were followed 3 and 6 months post-treatment. Data were analyzed with multilevel models, and P values were two-sided. Results: Compared with ICs in the waitlist condition, ICs in the ERT-C condition experienced medium to large statistically significant reductions in psychological distress (Hedge's g = 0.86, 95% confidence interval [CI] = 0.40 to 1.32, P < .001), worry (g = 0.96, 95% CI = 0.50 to 1.42, P < .001), and caregiver burden (g = 0.53, 95% CI = 0.10 to 1.99, P = .007) post-treatment. No statistically significant effects were found for rumination (g = 0.24, 95% CI = -0.20 to 0.68, P = .220). Results concerning caregiver burden were maintained through 6 months follow-up. Although the effects on psychological distress and worry diminished, their end-point effects remained medium to large. No statistically significant effects on systemic inflammation were detected (C-reactive protein: g = .17, 95% CI = 0.27 to 0.61, P = .570; interleukin-6: g = .35, 95% CI = -0.09 to 0.79, P = .205; tumor necrosis factor-alpha: g = .11, 95% CI = 0.33 to 0.55, P = .686). Patients whose ICs attended ERT-C experienced a large increase in quality of life post-treatment (g = 0.88, 95% CI = 0.18 to 1.58, P = .017). Conclusions: To our knowledge, this is the first randomized controlled trial evaluating the efficacy of ERT-C for ICs. Given the previous disappointing effects of other cognitive behavioral therapies for this population, the present findings are very encouraging. Identifying ICs with elevated psychological distress and providing them with relevant psychotherapy appears an important element of comprehensive cancer care.

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Telepresence robots: Encouraging interactive communication between family carers and people with dementia

Objective: The aim of the study was to explore the feasibility of using telepresence robots to encourage interactive communication in dementia care, from the perspective of family carers. Methods: Qualitative findings from semi-structured interviews with six family carers. Results: Generally, family carers reported a feeling of presence and connectedness when talking to their family member via the telepresence robots. They reported the robots as helping to enhance longer conversations and social connection with their family member. Conclusion: Telepresence may offer potential to encourage social connection, in particular where families are unable to make regular visits to the nursing home.

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Dementia caregiver intervention development and adaptation in the Vietnamese American community: A qualitative study

Objectives: The purpose of this study was to obtain input and feedback on a proposed intervention to reduce stress and enhance the health of Vietnamese dementia caregivers. Methods: Sixteen semi-structured, in-depth interviews and two focus groups were conducted with a total of 21 key stakeholders (i.e., family caregivers, professionals, and community leaders). Results: Several themes emerged from the data, and these themes fell into two major domains: the first domain was recruitment and engagement into the intervention: (1) importance of faith-based institutions, (2) inclusion of multiple family members in the intervention, (3) community empowerment/ownership, and (4) importance of credibility and trust. The second domain included themes on intervention content: (1) education about Alzheimer’s disease and dementias and (2) tailoring the intervention to caregivers’ needs. Conclusions: Findings indicate that the proposed intervention could be very beneficial to caregivers, but slight modifications needed to be made. 

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Cost-Effectiveness and Effects of a Home-Based Exercise Intervention for Female Caregivers of Relatives with Dementia: Study Protocol for a Randomized Controlled Trial

Previous research has proposed a range of support interventions to mitigate the adverse impact of caregiving on the daily life of caregivers of relatives with dementia. However, the effectiveness of these interventions shows a high variability. Informal caregivers usually lack the time and/or live too far from conventional facilities to do physical exercise, especially those who live in rural areas. Thus, home-based interventions may be more efficacious due to their greater convenience for this population. The present work proposes and describes a study protocol for a randomized control trial that will analyze the efficacy and cost-effectiveness of a home-based, structured individual physical exercise intervention to improve the health-related quality of life and the mental health of female informal caregivers of relatives with dementia. The nine-month-long intervention will comprise participation in two supervised physical exercise sessions per week at the caregiver's home. The proposed study outcomes will be: (1) feasibility of and adherence to the home-based provision of the intervention; (2) improvement in physical fitness and quality of life; and (3) reduction in subjective burden, psychological symptomatology and depression. Analyses will also be performed to determine the cost-effectiveness after the intervention. In conclusion, this intervention might thus represent a tailored and feasible strategy to help caregivers cope with the physical and psychological stress resulting from caregiving-related responsibilities, and it could represent a novel cost-effective support home-based intervention for caregivers.

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Cognitive behavioural family intervention for people diagnosed with severe mental illness and their families: A systematic review and meta-analysis of randomized controlled trials

Introduction Cognitive behavioural family intervention (CBFI) may be an effective brief psychosocial intervention for people diagnosed with severe mental illness (SMI) and their families. No systematic review has summarized the effectiveness of CBFI. Aim This review aimed to systematically examine the trial evidence of the effectiveness of CBFI versus treatment as usual (TAU) on improving the outcomes of people diagnosed with SMI and their families. Method Eligible randomized controlled trials were identified from nine databases. Three investigators independently took part in selection of articles, data extraction and risk assessment. Pooled treatment effects were computed using random-effects models. Results Four studies consisting of 524 participants were included. The risk of bias was low–unclear in most areas. The pooled CBFI effect on four service user outcomes including overall positive symptoms, delusions, overall negative symptoms and general psychopathology was significantly improved at post-treatment, compared with TAU, whereas effects on hallucinations and insight were equivocal. Discussion The findings reveal that CBFI is superior to TAU in treating positive and negative symptoms immediately following the intervention. Implications for Practice Mental health nurses may practise CBFI to enrich the psychiatric nursing service and promote nurse-led intervention. However, there is currently no substantial evidence that the intervention is effective over the longer term. 

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Technology and Caregiving: Emerging Interventions and Directions for Research

An array of technology-based interventions has increasingly become available to support family caregivers, primarily focusing on health and well-being, social isolation, financial, and psychological support. More recently the emergence of new technologies such as mobile and cloud, robotics, connected sensors, virtual/augmented/mixed reality, voice, and the evermore ubiquitous tools supported by advanced data analytics, coupled with the integration of multiple technologies through platform solutions, have opened a new era of technology-enabled interventions that can empower and support family caregivers. This paper proposes a conceptual framework for identifying and addressing the challenges that may need to be overcome to effectively apply technology-enabled solutions for family caregivers. The paper identifies a number of challenges that either moderate or mediate the full use of technologies for the benefit of caregivers. The challenges include issues related to equity, inclusion, and access; ethical concerns related to privacy and security; political and regulatory factors affecting interoperability and lack of standards; inclusive/human-centric design and issues; and inherent economic and distribution channel difficulties. The paper concludes with a summary of research questions and issues that form a framework for global research priorities.

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How short is too short? A randomised controlled trial evaluating short-term existential behavioural therapy for informal caregivers of palliative patients

Background: Informal caregivers of palliative patients show higher levels of depression and distress compared with the general population. Fegg’s (2013) existential behavioural therapy was shortened to two individual 1-h sessions (short-term existential behavioural therapy). Aim: Testing the effectiveness of sEBT on psychological symptoms of informal caregivers in comparison with active control. Design: Randomised controlled trial. Setting/participants: Informal caregivers of palliative in-patients. Methods: The primary outcome was depression; secondary outcomes were anxiety, subjective distress and minor mental disorders, positive and negative affect, satisfaction with life, quality of life and direct health care costs. General linear mixed models allow several measurements per participant and change over time. Reasons for declining the intervention were investigated by Rosenstock’s Health Belief Model. Results: Overall inclusion rate was 41.0%. Data of 157 caregivers were available (63.1% females; mean age: 54.6 years, standard deviation (SD): 14.1); 127 participants were included in the main analysis. Participation in sEBT or active control was not significantly associated with post-treatment depression. Outcomes showed prevailingly significant association with time of investigation. Self-efficacy, scepticism of benefit of the intervention, belief of better coping alone and support by family and friends were significant factors in declining participation in the randomised controlled trial. Conclusion: Inclusion rate was tripled compared with a previously evaluated longer EBT group intervention. By shortening the intervention, inclusion rate was traded for effectiveness and the intervention could not impact caregivers’ psychological state. Early integration of sEBT and combination of individual and group setting and further study of the optimal length for caregiver interventions are suggested.

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Online Self-Management Support for Family Caregivers Dealing With Behavior Changes in Relatives With Dementia (Part 2): Randomized Controlled Trial

BACKGROUND: Online contacts with a health professional have the potential to support family caregivers of people with dementia. OBJECTIVE: The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention-involving among others personal email contacts with a dementia nurse-was compared with online interventions without these email contacts. METHODS: A randomized controlled trial was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to a (1) major self-management support intervention consisting of personal email contacts with a specialist dementia nurse, online videos, and e-bulletins; (2) medium intervention consisting only of online videos and e-bulletins; or (3) minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers' self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers' reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at 6 (T1) and 12 weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the 3 intervention arms. RESULTS: Family caregivers participating in the major intervention involving email contacts showed no statistically significant differences in self-efficacy after the intervention compared with the minor intervention involving only e-bulletins (difference -0.02, P=.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over time (difference -4.21, P=.09) and at T1 (difference -4.71, P=.07) compared with the minor intervention involving only e-bulletins. No statistical differences were found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. CONCLUSIONS: The expectation that an online self-management support intervention involving email contacts would lead to positive effects and be more effective than online interventions without personal email contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal email contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher use rates is required. TRIAL REGISTRATION: Netherlands Trial Registry NTR6237; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6237 (Archived by WebCite at http://www.webcitation.org/6v0S4fxTC). INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/resprot.8365. ©Judith G Huis in het Veld, Bernadette M Willemse, Iris FM van Asch, Rob BM Groot Zwaaftink, Paul-Jeroen Verkade, Jos WR Twisk, Renate Verkaik, Marco M Blom, Berno van Meijel, Anneke L Francke. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 25.02.2020.

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An Environmental Scan of Caregiver Support Resources Provided by Hospice Organizations

Background: Informal caregiver support programs offered by hospice organizations support the health and wellbeing of clients and caregivers. However, an understanding of the best practices for informal caregiver support programs currently undertaken across Canada remains unknown, particularly across the province of British Columbia. Aim: The aim of the present study was to describe what existing resources and supports are provided by hospice organizations for informal caregivers of persons who are nearing end of life or who are recently bereaved in British Columbia, Canada. Methods: In this descriptive study, two thirds of hospice organizations (N = 42/66; 26 urban, 16 rural) participated in a semi-structured telephone interview focused on informal caregiver support programs. All interviews were recorded, transcribed and analyzed thematically and descriptive statistics were employed. Findings: While no one-size-fit-all caregiver support program emerged as a gold standard across all hospice organizations, nearly two thirds (n = 26/42) offered one or more informal caregiver support programs. Four categories of caregiver support programs emerged from the data analysis, including companioning, bereavement and grief supports, education and service supports, and respite for caregivers. Conclusion: Caregiver support programs are a valuable service provided by some but not all hospice organizations across British Columbia, Canada. Future studies are needed to determine best methods for hospice organizations to formally assess caregivers’ needs and to determine the success and effectiveness of such programs in support of program expansion and evaluation.

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Cost–Utility Analyses of Interventions for Informal Carers: A Systematic and Critical Review

Background: Demographic and epidemiological changes place an increasing reliance on informal carers. Some support programmes exist, but funding is often limited. There is a need for economic evaluation of interventions for carers to assist policymakers in prioritizing carer support. Objective: Our aim was to systematically review and critically appraise cost–utility analyses of interventions for informal carers, in order to assess the methods employed and the quality of the reporting. Methods: A systematic review of databases was conducted using MEDLINE, Embase, PsycINFO, and EconLit of items published between 1950 and February 2019. Published studies were selected if they involved a cost–utility analysis of an intervention mainly or jointly targeting informal carers. The reporting quality of economic analyses was evaluated using the Consolidated Health Economic Evaluation Reporting Standards (CHEERS) statement. Results: An initial set of 1364 potentially relevant studies was identified. The titles and the abstracts were then screened, resulting in the identification of 62 full-text articles that warranted further assessment of their eligibility. Of these, 20 economic evaluations of informal carer interventions met the inclusion criteria. The main geographical area was the UK (n = 11). These studies were conducted in mental and/or behavioural (n = 15), cardiovascular (n = 3) or cancer (n = 2) clinical fields. These cost–utility analyses were based on randomized clinical trials (n = 16) and on observational studies (n = 4), of which only one presented a Markov model-based economic evaluation. Four of the six psychological interventions were deemed to be cost effective versus two of the four education/support interventions, and four of the nine training/support interventions. Two articles achieved a CHEERS score of 100% and nine of the economic evaluations achieved a score of 85% in terms of the CHEERS criteria for high-quality economic studies. Conclusions: Our critical review highlights the lack of cost–utility analyses of interventions to support informal carers. However, it also shows the relative prominence of good reporting practices in these analyses that other studies might be able to build on. 

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Protecting the elderly through and beyond the Covid-19 lockdown

Extract: ...Add to this the knowledge that assaults and domestic murders surge by as much as 25% during a festive season - a time of increased financial strain and closer proximity of family members - and the present Covid-19 pandemic lockdown, the current environment for older people looks deeply concerning. Caregiver support interventions Stemming from the theoretical risk model of 'caregiver stress theory', caregiver support interventions seek to alleviate the stress and burden of caring for an older person by providing key services (including meal preparation, housekeeping help or day care, or broader caregiving help through educational, teaching coping strategies or support groups). There is help and support available for informal carers from Citizens Advice, and from local councils on a range of issues from making daily life easier to benefit claims * Have a conversation about practical arrangements for the future, e.g. 'Have you thought about future decision-making for health and financial matters?'; 'Do you feel confident managing your money?' Empowering older people to seek out knowledge to help plan their future can safeguard from abuse.

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Effect of education and telephone counseling on caregiver strain and unmet needs in family caregivers and self-care behaviors in patients with cancer: A randomized clinical trial

Background: Cancer treatment has been increasingly fulfilled on an outpatient basis by family caregivers. The variety and severity of caregivers' responsibilities expose them to physical and mental risks. Investigating the effect of education and telephone counseling on patient and family outcomes requires performing further studies. Aim: This study aimed to determine the effect of education and telephone counseling on caregiver strain and unmet needs in family caregivers and self-care behaviors in cancer patients. Method: The present randomized controlled trial was conducted on 60 caregivers-cancer patients referred to urban health education clinics in northeastern Iran within 2018-2019. A 20-minute face-to-face training session was held for the caregivers of cancer patients, and seven training pamphlets were given to the caregivers. Moreover, the intervention group received four telephone counseling sessions during three courses of chemotherapy. The strain and unmet needs of caregivers were measured by the Zarit Burden Interview and Supportive Care Needs Survey-Partners and Caregivers questionnaires, respectively. The patient self-care was assessed by the Nail Self-care Diary questionnaire. The data were analyzed by SPSS software (version 16) using an independent t-test and paired t-test. Results: The mean values of caregivers' age were 38.9±12.7 and 37.7±8.6 years in the intervention and control groups, respectively. The results of the independent t-test showed no statistically significant difference between the two groups (P=0.42). The results also revealed that the mean scores of caregiver strain and unmet needs decreased following the intervention, and the mean scores of self-care behaviors increased in the intervention group after the intervention (P=0.001). Implications for Practice: Education and telephone counseling can simultaneously help to follow up problems, improve self-care behaviors in cancer patients, alleviate the caregiver strain, and meet the needs of family caregivers. 

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The ResidentialCare Transition Module: A single-blinded randomized controlled evaluation of a telehealth support intervention for family caregivers of persons with dementia living in residential long-term care

Background: Families do not fully disengage from care responsibilities following relatives' admissions to residential long-term (RLTC) care settings such as nursing homes. Caregiver stress, depression, or other key outcomes remain stable or sometimes increase following a relative's RLTC entry. Some interventions have attempted to increase family involvement after institutionalization, but few rigorous studies have demonstrated whether these interventions are effective in helping families navigate the potential emotional and psychological upheaval presented by relatives' transitions to RLTC environments. The Residential Care Transition Module (RCTM) provides six formal sessions of consultation (one-to-one and family sessions) over a 4-month period to family caregivers who have admitted a relative to a RLTC setting. Methods: In this embedded mixed methods randomized controlled evaluation, family members who have admitted a cognitively impaired relative to a RLTC setting are randomly assigned to the RCTM (n = 120) or a usual care control condition (n = 120). Primary outcomes include reductions in family members' primary subjective stress and negative mental health outcomes; secondary role strains; and residential care stress. The mixed methods design will allow for an analysis of intervention action mechanisms by "embedding" qualitative components (up to 30 semi-structured interviews) at the conclusion of the 12-month evaluation. Discussion: This evaluation will fill an important clinical and research gap by evaluating a psychosocial intervention designed for families following RLTC admission that determines whether and how the RCTM can help families better navigate the emotional and psychological challenges of residential care transitions. Trial registration: ClinicalTrials.gov (NCT02915939, prospectively registered). 

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Potential for Digital Monitoring to Enhance Wellbeing at Home for People with Mild Dementia and Their Family Carers

Digital technologies have the potential to assist people with dementia to monitor day to day activities and mitigate the risks of living independently. This purposive pilot study surveyed participants for frailty, wellbeing, and perceived carer burden using the 3Rings(TM) digital plug. 30 paired participants used the digital device for four months. People with dementia reported a decline in wellbeing and increased frailty. Family carers reported a decline in wellbeing but 18 reported a reduction in burden. The use of digital monitoring by family carers demonstrated a reduction in their perceived burden and the device was acceptable to people with mild dementia living alone.

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Paid family leave in a large urban center academic radiology department: How we do it

No abstract. Extract:

'Looking ahead to the next generation of radiology trainees, and recognizing that radiology residency typically overlaps with prime child-bearing years and the challenges associated with balancing rigorous call and rotation schedules with a newborn, we sought to establish a parental leave policy for our radiology residents of both genders. Residents are considered employees, as per the 2011 supreme court ruling [16], and as such are entitled to 12 weeks of unpaid family leave under FMLA [17]. Unfortunately, due to time constraints associated with Accreditation Council for Graduate Medical Education (ACGME) requirements for graduation, as well as American Board of Medical Specialities (ABMS) board eligibility requirements, which are in part dependent on duration of training, residency programs' parental leave policies are variable, with majority providing little to no leave [18–20].'

... 'All eligible, as defined by FMLA [17], faculty in our academic radiology department of 135 faculty in NYC, are allotted up to 14 weeks of paid family leave, to be taken within the first year of having or adopting a child or whenever needed to care for a spouse, child or parent with a serious health condition.'

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Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure: The ENABLE CHF-PC Randomized Clinical Trial

Importance: Family caregivers of persons with advanced heart failure perform numerous daily tasks to assist their relatives and are at high risk for distress and poor quality of life. Objective: To determine the effect of a nurse-led palliative care telehealth intervention (Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers [ENABLE CHF-PC]) on quality of life and mood of family caregivers of persons with New York Heart Association Class III/IV heart failure over 16 weeks. Design, Setting, and Participants: This single-blind randomized clinical trial enrolled caregivers aged 18 years and older who self-identified as an unpaid close friend or family member who knew the patient well and who was involved with their day-to-day medical care. Participants were recruited from outpatient heart failure clinics at a large academic tertiary care medical center and a Veterans Affairs medical center from August 2016 to October 2018. Intervention: Four weekly psychosocial and problem-solving support telephonic sessions lasting between 20 and 60 minutes facilitated by a trained nurse coach plus monthly follow-up for 48 weeks. The usual care group received no additional intervention. Main Outcomes and Measures: The primary outcomes were quality of life (measured using the Bakas Caregiver Outcomes Scale), mood (anxiety and/or depressive symptoms measured using the Hospital Anxiety and Depression Scale), and burden (measured using the Montgomery-Borgatta Caregiver Burden scales) over 16 weeks. Secondary outcomes were global health (measured using the PROMIS Global Health instrument) and positive aspects of caregiving. Results: A total of 158 family caregivers were randomized, 82 to the intervention and 76 to usual care. The mean (SD) age was 57.9 (11.6) years, 135 (85.4%) were female, 82 (51.9%) were African American, and 103 (65.2%) were the patient's spouse or partner. At week 16, the mean (SE) Bakas Caregiver Outcomes Scale score was 66.9 (2.1) in the intervention group and 63.9 (1.7) in the usual care group; over 16 weeks, the mean (SE) Bakas Caregiver Outcomes Scale score improved 0.7 (1.7) points in the intervention group and 1.1 (1.6) points in the usual care group (difference, -0.4; 95% CI, -5.1 to 4.3; Cohen d = -0.03). At week 16, no relevant between-group differences were observed between the intervention and usual care groups for the Hospital Anxiety and Depression Scale anxiety measure (mean [SE] improvement from baseline, 0.3 [0.3] vs 0.4 [0.3]; difference, -0.1 [0.5]; d = -0.02) or depression measure (mean [SE] improvement from baseline, -0.2 [0.4] vs -0.3 [0.3]; difference, 0.1 [0.5]; d = 0.03). No between-group differences were observed in the Montgomery-Borgatta Caregiver Burden scales (d range, -0.18 to 0.0). Differences in secondary outcomes were also not significant (d range, -0.22 to 0.0). Conclusions and Relevance: This 2-site randomized clinical trial of a telehealth intervention for family caregivers of patients with advanced heart failure, more than half of whom were African American and most of whom were not distressed at baseline, did not demonstrate clinically better quality of life, mood, or burden compared with usual care over 16 weeks. Future interventions should target distressed caregivers and assess caregiver effects on patient outcomes. Trial Registration: ClinicalTrials.gov Identifier: NCT02505425.

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Public policy for supporting employed family caregivers of the elderly: the Israeli case

The demographic processes that have  been avolving in recent years around the world and Israeli society in particular, associated with the rise in life expectancy and the aging of population, are rasing the depedency ratio  and increasing public policy  makers' interest in issues related to caring for the elderly and thier support. These  circumstances have a considerable effect on family member required to  assist  thier aging parents, as they raise the potential support ratio and have an even greater impact on employed family caregivers. This article examined the policy implemented in Israel for providing support and assistance to employed family caregivers assisting ageing parents. It shows that the current policy is relatively limited compared to that of other liberal countries and not compatible with caregivers’ demands and needs. The article calls for implementing an effective public policy for employed family caregivers and suggests ways of formulating such a policy. 

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Systematic review: Influence of self-help groups on family caregivers

Introduction: Since the incorporation of women into the world of work, together with the progressive ageing of the population and the increase of chronic diseases, there is an alteration in the role of the caregiver, due to the physical, work and family burden it bears, emotional conflicts and with other family members. Mutual aid can be an effective alternative to promoting the well-being of caregivers, as well as their families and dependents. Objective: To know the characteristics of self-help groups for family caregivers and their influence on caregivers, the dependent and family health. Methodology: Systematic review. The search strategy included the Pubmed, Scopus, Psycinfo, Eric, Cochrane plus and CSIC databases; selecting scientific articles in either Spanish, Catalan, English, Portuguese or French, for the last 10 years. Results: 12 articles related to the study topic were selected. All studies show that participation in these groups can improve the physical-psychological well-being, the health of caregivers and, at the same time, reinforce their sense of social support, although there is a lack of studies in our environment, with a size higher quality sample. Conclusions: Caregivers benefit from participating in self-help groups. Therefore, they should become a routine component of the family caregiver. 

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Supporting patients and carers affected by pancreatic cancer: A feasibility study of a counselling intervention

Purpose: Patients with pancreatic cancer have extremely high unmet psychological and physical needs. Family carers of these patients have even higher levels of distress than patients. Our purpose was to assess the feasibility and acceptability of a counselling intervention in patients diagnosed with pancreatic cancer and their carers. Methods: We conducted a single-arm feasibility study of the PREPARES (Patients and RElatives affected by PAncreatic cancer: Referral, Education and Support) pilot intervention. Patient and carer participants received up to nine counselling sessions delivered by a trained nurse via telephone and/or telehealth technology. The intervention, informed by self-efficacy theory, involved components to assess and address care needs, and provide feedback to clinicians. Feasibility was measured using participation and retention rates. Participants completed semi-structured interviews at the end of the intervention about acceptability. These were analysed using thematic analysis. Results: Twelve people participated: five patients and seven carers (38% and 50% participation rates respectively). Most participants (eight) completed all nine counselling sessions; two chose to receive fewer sessions and two were discontinued requiring more intensive psychiatric support. The intervention was highly acceptable. Participants unanimously preferred the telephone over video-conferencing and to receive counselling separately from their carer/patient. The main perceived benefits were emotional support, the nurse-counsellors’ knowledge, care coordination and personalised care. Suggested improvements included a welcome pack about their nurse-counsellor and that sessions should continue beyond nine sessions if required. Conclusions: The PREPARES intervention was feasible and highly acceptable. This low-cost intervention provided much-needed support to people affected by this devastating disease.

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The effectiveness of a nurse‐led intervention to support family caregivers in end‐of‐life care: Study protocol for a cluster randomized controlled trial

Aim To evaluate the feasibility of a structured nurse‐led supportive intervention and its effects on family caregivers in end‐of‐life care at home.Background Family caregivers are crucial in end‐of‐life care. They may experience burden due to the responsibilities associated with caregiving. Some family caregivers feel insufficiently prepared for their caregiver role. Nurses have a unique position to provide supportive interventions at home to reduce caregivers’ burden and improve preparedness. However, few nurse‐led interventions are available to support family caregivers in end‐of‐life care at home. Design We will perform a cluster randomized controlled trial. The clusters consist of twelve home care services, randomly assigned to the intervention group or the control group. Methods The study population consists of family caregivers of patients in the last phase of life. In the intervention group, nurses will systematically assess the supportive needs of family caregivers, using an assessment tool and the method of clinical reasoning. Family members of the control group receive care as usual. Primary outcome is burden measured by the Self‐Rated Burden Scale. Secondary outcomes are preparedness for caregiving, caregiving reactions and acute (hospital) admissions of the patient. In addition, the feasibility of the intervention will be evaluated. The study was funded in October 2016 and was ethically approved in April 2019. Impact Findings from this study will contribute to the scientific and practical knowledge of nursing interventions to support family caregivers in end‐of‐life care. Trial registration The Netherlands Trial Register (NL7702)

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Recovering together: Building resiliency in dyads of stroke patients and their caregivers at risk for chronic emotional distress; A feasibility study

Background: A stroke is a sudden, life-altering event with potentially devastating consequences for survivors and their loved ones. Despite advances in endovascular and neurocritical care approaches to stroke treatment and recovery, there remains a considerable unmet need for interventions targeting the emotional impact of stroke for both patients and their informal caregivers. This is important because untreated emotional distress becomes chronic and negatively impacts quality of life in both patients and caregivers. Our team previously used mixed methods to iteratively develop a six-session modular dyadic intervention to prevent chronic emotional distress in patients with stroke and their informal caregivers called "Recovering Together" (RT) using feedback from dyads and the medical team. The aim of the current study is to test the feasibility of recruitment, acceptability of screening and randomization methods, acceptability of RT, satisfaction with RT, feasibility of the assessment process at all time points, and acceptability of outcome measures. Secondarily, we aimed to explore within-treatment effect sizes and change in clinically significant symptoms of depression, anxiety, and post-traumatic stress (PTS). The larger goal was to strengthen methodological rigor before a subsequent efficacy trial. Methods: We conducted a feasibility randomized controlled trial to evaluate the RT intervention relative to minimally enhanced usual care (MEUC) in stroke patients admitted to a Neurosciences Intensive Care Unit (Neuro-ICU). Dyads were enrolled within 1 week of hospitalization if they met specific eligibility criteria. Assessments were done via paper and pencil at baseline, and electronically via REDCap or over the phone at post-intervention (approximately 6 weeks after baseline), and 3 months later. Assessments included demographics, resiliency intervention targets (mindfulness, coping, self-efficacy, and interpersonal bond), and emotional distress (depression, anxiety, and PTS). Primary outcomes were feasibility and acceptability markers. Secondary outcomes were depression, anxiety, PTS, mindfulness, coping, self-efficacy, and interpersonal bond. Results: We consented 20 dyads, enrolled 17, and retained 16. Although many patients were missed before we could approach them, very few declined to participate or dropped out once study staff made initial contact. Feasibility of enrollment (87% of eligible dyads enrolled), acceptability of screening, and randomization (all RT dyads retained after randomization) were excellent. Program satisfaction (RT post-test M = 11.33/12 for patients M = 12/12 for caregivers), and adherence to treatment sessions (six of seven RT dyads attending 4/6 sessions) were high. There were no technical difficulties that affected the delivery of the intervention. There was minimal missing data. For both patients and caregivers, participation in RT was generally associated with clinically significant improvement in emotional distress symptoms from baseline to post-test. Participation in MEUC was associated with clinically significant worsening in emotional distress. Although some of the improvement in emotional distress symptoms decreased in the RT group between post-test to 3 months, these changes were not clinically significant. RT was also associated with substantial decrease in frequency of individuals who met criteria for clinically significant symptoms, while the opposite was true for MEUC. There were many lessons that informed current and future research. Conclusions: This study provided evidence of feasibility and signal of improvement in RT, as well as necessary methodological changes to increase recruitment efficiency before the future hybrid efficacy-effectiveness trial. Trial registration: NCT02797509. © 2020 The Author(s).

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Emotion regulation therapy for cancer caregivers-an open trial of a mechanism-targeted approach to addressing caregiver distress

Informal caregivers (ICs) are integral to care provided to patients facing life-threatening or incurable illnesses. This responsibility causes considerable burden, as approximately one half of ICs report clinically significant symptoms of depression and/or anxiety that persist when left untreated. Psychosocial interventions containing efficacious treatment principles (e.g., cognitive behavior therapy [CBT]) show disappointing results in reducing anxiety and depression in ICs. This may reflect failure of these interventions to specifically target crucial mechanisms underlying the central feature of distress caused by the patient's illness-notably, perseverative negative thinking (PNT). Emotion Regulation Therapy (ERT) is an efficacious CBT developed to explicitly target mechanisms underlying PNT and the emotional concomitants that arise in response to stressful situations. This open trial was conducted to evaluate the acceptability and initial efficacy of ERT adapted to the experience of cancer ICs (ERT-C). Thirty-one ICs provided informed consent and completed eight weekly individual sessions of ERT-C. Participants completed self-report measures of depression and anxiety symptoms, PNT, emotion regulation deficits, and caregiver burden before and after treatment. ERT-C was well tolerated as indicated by 22 treatment completers and feedback provided in exit interviews. ICs demonstrated reduced depression and anxiety symptoms, PNT, and emotion regulation deficits with moderate to large effect sizes (Hedge's g range: 0.36-0.92). Notably, caregiver burden was not reduced but ICs expressed more ability to confront caregiving-related challenges. Findings offer promising but preliminary support for ERT-C as a conceptual model and treatment modality for distressed cancer ICs. 

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Mindfulness-based stress reduction for family carers of people with dementia

Mindfulness‐based stress reduction (MBSR) developed by Jon Kabat‐Zinn has shown to assist carers cope with their stress when they feel overwhelmed by the responsibility of care.  The authors in this Cochrane review aimed to evaluate the evidence supporting the use of MBSR for reducing the psychological distress among carers looking after their family members with dementia.

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Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home - study protocol for a web-based intervention

Background Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. Methods The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. Discussion This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.

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Supporting working carers: How employers and employees can benefit

  • This report examines the ability of working carers to combine caring responsibilities with paid employment and the difference that employer support can make. The report focuses on employees and does not cover the self-employed.
  • Three research questions are addressed: What are the challenges that working carers face? What forms of support do employers provide to working carers, and how does this vary across sectors and types of organisation? How do these forms of support benefit working carers and the organisations for which they work?
  • Findings are based on data from a representative survey of working carers in England and Wales. The survey was commissioned by the CIPD and used a questionnaire developed by the Sustainable Care team administered by YouGov. It was conducted online in July/August 2019 and completed by 970 unpaid carers in paid employment (excluding self-employed workers).
  • The research report is an output from a large research programme – the Sustainable Care: Connecting people and systems programme – based at the University of Sheffield, UK. Funded by the Economic and Social Research Council, the programme is a multidisciplinary project exploring social care arrangements in the UK and around the world.
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The impact of social care services on carers' quality of life

Unpaid care is an important part of long-term care systems. It is increasingly recognised that carers have their own health and well-being needs. Carer-specific interventions, as well as support for the care-recipient, may enable carers to maintain their own health and well-being alongside caring. This study seeks to establish whether and how community-based care services affect carers' quality of life. The Adult Social Care Outcomes Toolkit for Carers was used to capture carers' social care-related quality of life through qualitative interviews and a survey of carers in England in order to provide insights into the impact of community-based care services on carers' quality of life outcomes.

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Coronavirus (COVID-19) and carers: Carers NSW Position statement, 7 May 2020

As the peak non-government organisation for carers in NSW, Carers NSW has been closely monitoring related policy developments that may directly impact carers and the people they care for, and has been in continual contact with carers across the state to understand and respond to their changing support needs. This position statement draws on ongoing policy and media analysis, more than 50 carer case studies, and 5 consultations held with 30 carers and other stakeholders.

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Caring Through COVID: Life in Lockdown

This report sets out the findings of a national survey undertaken by Family Carers Ireland between April 14th and May 5th 2020 which examined family carers’ experience of caring during the COVID-19 pandemic. The online survey was completed by 1,307 current family carers representing a range of caring situations – parents caring for children with a disability, those caring for an adult, carers of older people and those caring for multiple people. The survey was open to respondents 18 years and older. As not all respondents completed every question in the survey, a number of the figures given in this report, including those presented here, are based upon responses from fewer than 1,307 carers. A family carer is someone who is providing an ongoing significant level of care to a person who is in need of that care in the home due to illness, disability or frailty.

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What is known from the existing literature about peer support interventions for carers of individuals living with dementia: A scoping review

This scoping review comprehensively describes evidence of using peer support to assist informal carers of individuals with dementia (any type). A systematic search of 11 databases (CINAHL, Cochrane Library, Medline, Embase, PsychInfo, Web of Science, Scopus, Science Direct, ProQuest, TRIP and PubMed) was conducted for research published between 2007-2017 focussing on informal dementia carers, and research designs with interventions incorporating or consisting exclusively of peer support. Authors worked independently to screen retrieved articles, review applicability and extract data. Thirty-six research papers (representing 28 original studies) were identified, from these, two modes of delivery were demonstrated: 12 studies provided the intervention online, and the remainder face-to-face. The review indicated that peer support is of potential benefit to carers if it is delivered via either mode. It is not clear what components may or may not be effective as results provided a mixed landscape of differing intervention effectiveness due to the wide variation in outcome measurements. Trial design using a multi-component intervention was the predominant choice, with the most common components being Information Sharing and Non-Healthcare Professional Support for both delivery modes. The burden/anxiety/depression compendium and health and well-being were the most frequently measured outcomes; perceived level of support was one of the least. The peer support interventions identified included various components, demonstrating no true best practice model. Nonetheless, they can be offered successfully online or face-to-face. This provides a unique opportunity to develop and supply tailored peer support interventions for informal dementia carers to ensure their specific needs are met. Further work is required to construct and evaluate the effectiveness of targeted peer-led support whether online or face-to-face to meet the individual needs of dementia carers.

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Using a Nursing Salon to Identify and Develop an Initiative for Family Caregivers of Older Adults

The purpose of the Aging Well Nursing-Interprofessional Salon was to explore current local community healthcare issues for older adults and to develop innovative strategies that support and enhance their health. An initiative emerged from the salon that focuses on identifying caregivers to ensure their awareness of available support resources. We are in the process of developing a pilot plan that includes collaboration of PhD and doctorate of nursing practice students, nursing faculty, and community agencies that support older adults.

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A Tablet App Supporting Self-Management for People With Dementia: Explorative Study of Adoption and Use Patterns

Background: Assistive technology (AT) is rapidly emerging within dementia care and support. One area of AT application is support of people with dementia in compensating for cognitive symptoms and thereby promoting their self-management. There is, however, little evidence for the applicability, usability, and effectiveness of AT for people with dementia, and there is a need to identify factors that can promote adoption.; Objective: This study aimed to (1) evaluate the applicability and usability of an app, tailor-made for people with dementia; (2) explore factors affecting adoption; (3) explore the possible influence of caregiver involvement; and (4) contribute to process evaluation of the intervention.; Methods: The ReACT (Rehabilitation in Alzheimer's disease using Cognitive support Technology) app was designed as a holistic solution to support memory and structure in daily living. Persons with dementia had access to a personal user account, and family caregivers were given a parallel login. Written and Web-based materials were provided to support self-applied implementation. A mixed methods design was applied to explore adoption and use patterns, including background and disease-related data, qualitative data from a survey, and log data. Adoption was defined as the use of the app over a period of ≥90 days.; Results: Data from 112 participants and 98 caregivers were included. Shorter time from diagnosis (U=595; P=.046; r=0.19) and caregiver activating the app (P=.02) had a significant impact on the participant adoption status. Logistic regression analysis showed that if caregivers had activated the app, the participant was five times more likely to become an adopter (odds ratio 5.1, 95% CI 1.29-19.99; P=.02). However, the overall predictive power was low, and there was a wide variation in background and disease-related characteristics among adopters. The level of experience and skills in tablet use were not significantly different between adopters and nonadopters. Adopters generally rated the app high on usefulness, satisfaction, and ease of use (rated on the USEdem questionnaire). Their scores were significantly higher compared with nonadopters (U=5.5; P=.02; r=0.64). Analysis of use patterns showed that all functionalities of the app were used among adopters.; Conclusions: For participants who became adopters, the ReACT app and the methods for self-applied implementation were applicable. However, the results were also in accordance with the well-known challenges of nonadoption and nonadherence to digital health interventions. The study provided insight into the importance of timely introduction and caregiver support for adoption of AT among people with dementia. It also underlined the high complexity of personal and contextual factors that influence adoption. These complex factors need to be considered when designing and implementing AT for people with dementia.

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Systematic Review of Technology-Based Interventions Targeting Chronically Ill Adults and Their Caregivers

The purpose of this systematic review is to synthesize the study design features as well as the attributes and outcomes of technology-based health interventions targeting chronically ill adults and their family caregivers. Twenty papers representing 19 studies met the inclusion criteria. Various theoretical foundations or approaches guided the interventions in 11 studies. Interventions either aimed to support patient self-management and improve patient outcomes or enhance shared illness management and improve patient and caregiver outcomes. The interventions included educational, behavioral, and support components and were delivered using various technologies ranging from text messaging to using the Internet. Overall, patients and caregivers expressed improvements in self-management outcomes (or support) and quality of life. Interventions with a dyadic focus reported on interpersonal outcomes, with improvements noted mostly in patients. This review captures an emerging area of science, and findings should be interpreted in light of the methodological limitations of the included studies.

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A systematic review of online interventions for families of patients with severe mental disorders

Background: Several studies show the effectiveness of face-to-face interventions with families in improving the prognosis of patients with severe psychiatric disorders and their relatives; however, the effectiveness of online interventions is poorly understood. The current study aims to provide an overview of evidence for the effectiveness of online treatments (web/app) for patients with severe psychiatric disorders and their families.; Method: We performed a systematic review of online treatments for informal family caregivers of patients with a severe psychiatric disorder. The study psychological interventions had to have been administered in an exclusively online format (app, internet) and aimed at families of patients with severe mental disorder (at least one of first episode psychosis, schizophrenia, schizoaffective, bipolar disorder, and psychotic disorder).; Results: Of a total of 1331 articles, we identified 9 viable studies; 4 randomized clinical trials, and 5 nonrandomized clinical studies. The present study is the first systematic review in this area. Online interventions were well accepted, with good adherence and satisfaction among the caregivers and patients and improved the symptoms of both caregivers and patients.; Limitations: Clinical and methodological diversity of the studies.; Conclusions: Burden improved, and perceived stress decreased in families. Moreover, the severity of positive symptoms decreased and fewer hospitalizations were recorded in patients than in the control group. Therefore, online interventions are a promising therapeutic approach for patients with severe mental disorder and their families. However, more studies-particularly randomized clinical trials-are needed in this area.

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A systematic meta-review of self-management support for people with dementia

Self-management support for people with dementia is important to help them and their family caregivers to cope with challenges in daily live. Insight into the effects of self-management support interventions on people with dementia is however lacking, despite existing relevant systematic reviews. We therefore conducted a meta-review of relevant systematic reviews, following the PRISMA statement. Systematic literature searches were conducted in PubMed, CINAHL, the Cochrane Library, Embase and PsycINFO. The searches were done in December 2015, and all relevant references until then were taken into consideration. No conclusions about the effects of self-management support interventions on people with dementia could be drawn. Recommendations for future research and practice include that self-management support interventions and effect measurements should be wider in scope than psychological well-being.

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Staging dementia based on caregiver reported patient symptoms: Implications from a latent class analysis

Background: Tailoring interventions to the needs of caregivers is an important feature of successful caregiver support programs. To improve cost-effectiveness, group tailoring based on the stage of dementia could be a good alternative. However, existing staging strategies mostly depend on trained professionals. Objective: This study aims to stage dementia based on caregiver reported symptoms of persons with dementia. Methods: Latent class analysis was used. The classes derived were then mapped with disease duration to define the stages. Logistic regression with receiver operating characteristic curve was used to generate the optimal cut-offs. Results: Latent class analysis suggested a 4-class solution, these four classes were named as early (25.9%), mild (25.2%), moderate (16.7%) and severe stage (32.3%). The stages based on the cut-offs generated achieved an overall accuracy of 90.8% compared to stages derived from latent class analysis. Conclusion: The current study confirmed that caregiver reported patient symptoms could be used to classify persons with dementia into different stages. The new staging strategy is a good complement of existing dementia clinical assessment tools in terms of better supporting informal caregivers. 

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Service users' and carers' experiences of engaging with early intervention services: A meta-synthesis review

Aim: The provision and implementation of early intervention for psychosis services (early intervention services [EIS]) has received increasing attention over recent years. Maximizing engagement with EIS is of clinical and economic importance, and exploring the experiences of those who access EIS is vital. Although research has been conducted exploring the experiences of engaging with EIS from both a service user and carer/family member point of view, these data have not been systematically collated to generate new understanding. The primary aim of this study is to review, critically appraise and synthesize qualitative findings relating to the experiences of service users and/or carers and family members engaging with EIS.; Methods: Four databases were systematically searched. Studies were analysed using an inductive thematic analysis approach, within a critical realist epistemological framework. Studies were critically appraised using the critical appraisal skills programme tool.; Results: Fourteen papers were identified for inclusion. Three main themes were identified: the importance of a personal relationship with an EIS staff member, the impact of this relationship and consideration of life after EIS. The importance of a strong relationship with EIS staff was the most prominent theme throughout the papers reviewed.; Conclusions: The quality of the therapeutic relationship with at least one EIS staff member was the single most important factor in determining whether the experience of accessing EIS was a positive or negative one. The majority of the studies reviewed were conducted in the United Kingdom or Australia. Therefore, more research across countries is needed to understand transferability of findings.

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The role of the clinical nurse specialist multiple sclerosis, the patients' and families' and carers' perspective: An integrative review

Background: MS is a common, neurological disease and it's unpredictable, progressive disabling nature can have a devastating effect on patients, their families' and carers. It is therefore important that the MS Clinical Nurse Specialist develops appropriate skills, services and professional expertise to support individuals along the disease trajectory.; Design: An integrative literature review.; Method: A systematic search of nine databases; Cinahl, Medline, Scopus, Embase, Ovid, AMED, Academic Search Complete, Web of Science, PsycINFO up to January 31, 2018. Hand searching and review of secondary references also undertaken. Reporting using the PRISMA guidelines, quality appraised (Crowe Critical Appraisal Tool) and thematic data analysis approach (Braun and Clarke 2006).; Results: Findings from the 17 studies were extracted, synthesised and analysed thematically. Three themes emerged; the MS CNS as a longitudinal care co-ordinator, a bespoke care provider, and an expert resource. The findings suggest a strong desire for the MS CNS to be a leading health care professional to meet the needs of patient, family, and carer.; Conclusion: It can be argued that MS CNSs are best placed to meet the complex, variable needs individuals with MS, their families and carers. Further evidence is required to explore the variability of the disease and the progressive effect and impact of cognitive decline on MS patient, families' and carers' in order to meet their fluctuating and often complex needs. Findings from the review suggest a multifaceted role, and additionally, the needs of patients, families and carers are difficult to define as they vary over time as the disease progresses.

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Randomized controlled trial of supportive care interventions to manage psychological distress and symptoms in Latinas with breast cancer and their informal caregivers

Objective: The purpose of this study was to test two 2-month psychosocial interventions (Telephone Interpersonal Counseling [TIPC] and Supportive Health Education [SHE]) to improve quality of life (QOL) outcomes for Latinas with breast cancer and their informal caregivers. Methods: Two hundred and forty-one Latinas with breast cancer and their caregivers were assessed at baseline, immediately after the 2-month intervention, at 4 and 6 months after baseline. QOL outcomes were psychological distress, symptoms and social support. Results: Linear mixed effects models showed that for cancer survivors at 2 months, TIPC produced lower adjusted mean depression scores compared to SHE. At 4 months, SHE had reduced total number of symptoms, global symptom distress, and social isolation compared to TIPC. Only total number of symptoms was lower in SHE than in TIPC at 6 months. Among caregivers at 2 months, total number of symptoms, global symptom distress, and anxiety were lower, and self-efficacy for symptom management was higher in SHE compared to TIPC. Caregiver depression was lower in TIPC compared to SHE at 4 months. Conclusions: These telephone delivered interventions improved different outcomes. TIPC demonstrated superior benefits for depression management and SHE was more successful in anxiety and cancer-related symptom management. 

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Psychosocial Interventions for Family Carers of People With Dementia: A Systematic Review and Meta-Analysis

Objective:This study aimed to review and synthesize findings of the effectiveness of psychosocial interventions aimed at improving outcomes for family carers of people with dementia. Method: A systematic review and meta-analysis were conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched the following databases: Cochrane, PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo, Excerpta Medica Database (EMBASE), and Applied Social Sciences Index and Abstracts (ASSIA). RevMan 5 software was used to conduct meta-analysis and subgroup analysis using a random-effects model. Results: The search yielded 22 high-quality intervention articles that were suitable for further meta-analysis. Meta-analysis revealed that psychosocial interventions have a small to moderate significant effect on carer burden (standardized mean difference [SMD] = -0.34, confidence interval [CI] = [-0.59, -0.09]), depression (SMD = -0.36, CI = [-0.60, -0.13]), and general health (SMD = 0.34, CI = [0.18, 0.51]). Discussion: Psychosocial interventions had a positive impact on carer outcomes; however, these results should be interpreted with caution, given the significant level of heterogeneity in study designs. Future research could examine contextual and implementation mechanisms underlying psychosocial interventions to develop effective support systems for family carers of people with dementia.

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Why do family dementia caregivers reject caregiver support services? Analyzing types of rejection and associated health-impairments in a cluster-randomized controlled intervention trial

Although there are a number of support services accessible for most family dementia caregivers, many caregivers reject available and affordable support. Previous research suggests that rejections of support services may result from insufficient fit of available services with caregivers’ unmet needs and a lack of acknowledgement of caregivers’ unmet needs and associated support services. The present study investigates (a) the number, proportion and types of caregivers’ rejection on recommended tailored support, (b) socio-demographic and clinical determinants of caregiver’s rejection of both people with dementia (PwD) and caregivers, and (c) caregivers’ health-related variables related to caregivers’ rejection.

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Online training and support program (iSupport) for informal dementia caregivers: protocol for an intervention study in Portugal

Background: Informal caregivers (IC) of people with dementia (PwD) are at greater risk of developing physical and mental health problems when compared to the general population and to IC of people with other chronic diseases. Internet-based interventions have been explored for their potential to minimize the negative effects of caring, accounting for their ubiquitous nature, convenient delivery, potential scalability and presumed (cost) effectiveness. iSupport is a self-help online program developed by the World Health Organization (WHO) to provide education, skills training and support to IC of PwD. This paper describes the design of an intervention study aimed at determining the effectiveness of a Portuguese culturally adapted version of iSupport on mental health and other well-being outcomes.; Methods: The study follows an experimental parallel between-group design with two arms: access to the five modules and twenty-three lessons of "iSupport" for three months (intervention group); or access to an education-only e-book (comparison group). One hundred and eighty four participants will be recruited by referral from national associations. Inclusion criteria are: being 18 years or older and provide e-consent; being a self-reported non-paid caregiver for at least six months; of a person with a formal diagnosis of dementia; being skilled to use internet; and experience a clinically relevant level of burden (≥ 21 on Zarit Burden Interview) or depression or anxiety symptoms (≥ 8 on Hospital Anxiety and Depression Scale). Data is collected online, resorting to self-administered instruments, at baseline, 3 and 6 months after baseline. The primary outcome is caregiver burden, measured by the Zarit Burden Interview. Symptoms of depression and anxiety, quality of life, positive aspects of caregiving and general self-efficacy are secondary study outcomes. The data analysis will follow an Intention-to-treat (ITT) protocol.; Discussion: This protocol is an important resource for the many organizations in several countries aiming to replicate iSupport. Findings from this intervention study will offer evidence to bolster an informed decision making on scaling up iSupport as a new intervention program with minimal costs aimed at minimizing the psychological distress of IC of PwD in Portugal and elsewhere.; Trial Registration: ClinicalTrials.gov, NCT04104568. Registered 26 September 2019.;

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Namaste care in the home setting: developing initial realist explanatory theories and uncovering unintended outcomes

Introduction: The End-of-Life Namaste Care Program for People with Dementia, challenges the misconception that people with dementia are a 'shell'; it provides a holistic approach using the five senses, which can provide positive ways of communicating and emotional responses. It is proposed Namaste Care can improve communication and the relationships families and friends have with the person with dementia. Previously used in care homes, this study is the first to explore the pioneering use of Namaste Care in people's own homes.; Objective: To develop initial programme theories detailing if, how and under which circumstances Namaste Care works when implemented at home.; Design: A qualitative realist approach following the RAMESES II guidelines was employed to understand not only whether Namaste Care has positive outcomes, but also how these are generated, for whom they happen and in which circumstances.; Setting: A hospice in the North East of England, operating in the community, through volunteers.; Participants: Programme theories were developed from three focus groups with volunteers implementing Namaste Care (n=8; n=8; n=11) and eight interviews with family carers (n=8).; Results: Four refined explanatory theories are presented: increasing engagement, respite for family carers, importance of matched volunteers and increasing social interaction. It was identified that while Namaste Care achieved some of the same goals in the home setting as it does in the care home setting, it could also function in a different way that promoted socialisation.; Conclusions: Namaste Care provides holistic and personalised care to people with both moderate and advanced dementia, improving engagement and reducing social isolation. In the present study carers often chose to use Namaste Care sessions as respite. This was often linked to their frustration of the unavoidable dominance of task-focussed care in daily life. Individualised Namaste Care activities thus led to positive outcomes for both those with dementia and their carers.

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Multiple family group intervention for spinal cord injury: Quantitative and qualitative comparison with standard education

Objective: To evaluate a Multiple Family Group (MFG) education and support intervention for individuals with Spinal Cord Injury (SCI) and their primary caregivers. We hypothesized that MFG would be superior to an Education Control Group (EC) for improving patient activation and coping skills, social supports, and relationship functioning. Setting: A large free-standing inpatient and outpatient rehabilitation facility. Participants: Community dwelling adults with SCI and their caregivers living in the Northwest United States. Interventions/Methods: Nineteen individuals with SCI who had been discharged from inpatient rehabilitation within the previous three years, and their primary caregivers participated. Patient/caregiver pairs were randomized to the MFG intervention or an active SCI EC condition in a two-armed clinical trial design. Participants were assessed pre- and post-program and 6 months post-program. Qualitative and quantitative outcomes were evaluated. Focus groups were conducted with each group to determine benefits and recommendations for improvement. Results: Relative to EC, MFG reduced passive coping and increased subjective and overall social support in participants with SCI. Relative to EC, MFG also reduced passive coping in caregivers. Patient activation relative to EC was non-significantly increased. Content analysis identified four themes describing participants' experiences: enhanced sense of belonging, increased opportunities for engagement, knowledge, and team work; results that were generally congruent with quantitative measures of improved social support. Conclusions: Relative to EC, MFG assisted participants with SCI and their caregivers to manage the difficult, long-term, life adjustments by improving coping and strengthening social support.Trial registration: ClinicalTrials.gov NCT02161913. Registered 10 June 2014.

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Mindfulness Training Supports Quality of Life and Advance Care Planning in Adults With Metastatic Cancer and Their Caregivers: Results of a Pilot Study

Background: Emotional distress often causes patients with cancer and their family caregivers (FCGs) to avoid end-of-life discussions and advance care planning (ACP), which may undermine quality of life (QoL). Most ACP interventions fail to address emotional barriers that impede timely ACP.; Aim: We assessed feasibility, acceptability, and preliminary effects of a mindfulness-based intervention to facilitate ACP for adults with advanced-stage cancer and their FCGs.; Design: A single-arm pilot was conducted to assess the impact of a 6-week group mindfulness intervention on ACP behaviors (patients only), QoL, family communication, avoidant coping, distress, and other outcomes from baseline (T1) to post-intervention (T2) and 1 month later (T3).; Participants: Eligible patients had advanced-stage solid malignancies, limited ACP engagement, and an FCG willing to participate. Thirteen dyads (N = 26 participants) enrolled at an academic cancer center in the United States.; Results: Of eligible patients, 59.1% enrolled. Attendance (70.8% across 6 sessions) and retention (84.6% for patients; 92.3% for FCGs) through T3 were acceptable. Over 90% of completers reported high intervention satisfaction. From T1 to T3, patient engagement more than doubled in each of 3 ACP behaviors assessed. Patients reported large significant decreases in distress at T2 and T3. Family caregivers reported large significant improvements in QoL and family communication at T2 and T3. Both patients and FCGs reported notable reductions in sleep disturbance and avoidant coping at T3.; Conclusions: The mindfulness intervention was feasible and acceptable and supported improvements in ACP and associated outcomes for patients and FCGs. A randomized trial of mindfulness training for ACP is warranted. The study is registered at ClinicalTrials.gov with identifier NCT02367508 ( https://clinicaltrials.gov/ct2/show/NCT02367508 ).

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medAR: An augmented reality application to improve participation in health‐care decisions by family‐based intervention

[...]I would like to revise his statement slightly, to read: ‘We acknowledge that family and significant others can play a significant role in the process of decision making in some patients from non‐Western or Western cultural backgrounds more or less.’ [my emphasis]. [...]we equally know that doctors do not fulfil the obligation of medical information provision from the perspective of Chinese patients. If a couple of users open the phone app medAR at the same time, one can experience AR through scanning the marker in another phone Then in family caregivers of cesarean section maternity, six participators (control group) received symptomatic treatment, normal health care and communication as usual, meanwhile they were compared with five participators (medAR group) who experienced medAR and received the same treatment as control group.

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Managing Urinary Incontinence

This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home.The articles in this new installment of the series provide simple and useful instructions that nurses should reinforce with family caregivers. This article is the second of two that provide an update on urinary incontinence and its management in older adults. It includes an informational tear sheet-Information for Family Caregivers-that contains links to the instructional videos. To use this series, nurses should read the articles first, so they understand how best to help family caregivers, and then encourage caregivers to watch the videos and ask questions. For additional information, see Resources for Nurses.

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Living with dementia: using mentalization-based understandings to support family carers

The number of people living with dementia is rising due to the aging of the population. Nearly two thirds of people with dementia live at home and the majority of the emotional and practical support that they receive is provided by family carers. Psychodynamic perspectives provide a valuable framework of understanding from which to consider the emotional dimensions of caring for a family member who is living with dementia. This paper offers a further contribution to this emerging field of knowledge by discussing the impact that mentalizing and non-mentalizing states of mind may have on the dynamics of the relationship between a person with dementia and their family carers. The potential benefits of using mentalization-based understandings are illustrated by four case vignettes. The vignettes are taken from a communication skills training course for family carers called Empowered Conversations and a web-based support initiative called Empowered Carers, which is targeted at family carers who provide intensive support for people living with dementia in their own homes. 

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The Kintun program for families with dementia: From novel experiment to national policy (innovative practice)

The Kintun program is the first public health strategy specifically designed for dementia care in Chile. It was launched in 2013 in the city of Santiago with support from the National Service for the Elderly and the Municipality of Peñalolén. Using an interdisciplinary team, the program seeks to promote community integration and better support for persons with dementia and their caregivers. The multicomponent program includes: an activity-based day care center, training and education of family caregivers, home visits, and community outreach to increase dementia awareness. Case management helps to monitor ongoing needs and link families to resources. To date, 259 dyads (persons with dementia and their families) have been enrolled in the program. Due to its success in 2015, the Kintun program received funding from the Ministry of Health. This has led to the integration of previously disparate initiatives, better consistency across services, and the development of a comprehensive national dementia plan for Chile. 

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"It has been fun. Super‐duper fantastic": Findings from a Danish respite programme to support young carers

Awareness of young carers' experiences and needs is low on governmental and societal levels in Denmark. This article presents findings from the first evaluation of a Danish respite programme, the Buddy Programme, which aims to provide support to young carers aged 5–15 years who experience serious, chronic or mental health problems and/or death of a parent or sibling. Over a four‐six month period, volunteer students from University College Copenhagen offer young carers the opportunity of respite through participating in ordinary activities such as play and sports. In 2017–2018, based on a child‐centred approach, we conducted a qualitative study with interviews focusing on how the Buddy programme affected the children. The interviews took place at programme start, halfway through, and after completion with 22 children and 21 parents, as well as single interviews with 20 Buddies assigned to families after completion. Three main themes were identified: (1) the Buddy programme as an activity, (2) how the Buddy Programme affected the children and (3) ending the Buddy programme and wanting to continue the friendship. Our findings emphasise the importance of fun and cosy activities that provide children with respite from the serious concerns that otherwise fill the lives of young carers. Being with a Buddy created a free space, allowing children to play undisturbed and to temporarily keep concerns and a guilty conscience at a distance. By offering friendship, Buddies provided opportunities for young carers to feel special, be seen, acknowledged and taken seriously as a child with valid and specific needs and interests. Our findings may help increase awareness of the needs and interests of young carers on governmental and societal levels.

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Interventions to enhance access to and utilization of formal community care services for home dwelling persons with dementia and their informal carers. A scoping review

Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services. Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use. Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes. Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field.

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The influence of songwriting on quality of life of family caregivers of people with dementia: An exploratory study

Introduction: Living with a person with dementia (PWD) causes physical and psychological problems in family caregivers (FCGs), as well as a reduction in their Quality of Life (QOL). The purpose of this study was to examine the possible effectiveness of the therapeutic songwriting method for improving the QOL and well-being of FCGs of PWD. Methods: The sample of caregivers (n = 21) was divided into three homogeneous groups that received 12 intervention sessions. A non-randomized, quasi-experimental design with repeated measures (pre-post intervention) was employed to determine a possible therapeutic effect. The State-Trait Anxiety Inventory (STAI), Short-Form Health Survey (SF-36v2), Beck Depression Inventory, and Rosenberg Self- Esteem Scale were administered before and after the intervention. Results: The results showed a decrease in anxiety and depression scores and an increase in scores of self-esteem after the intervention. Regarding QOL, post-intervention scores in the Mental Component Summary and Mental Health were significantly higher. In contrast, a small effect size was observed for difference between pre-test and post-test on the subscales of QOL: General Health, Social functioning, Role Emotional and Bodily Pain. Discussion: This exploratory study concludes that therapeutic songwriting can help to reduce caregivers' symptoms of depression and anxiety and improve their perceived self-esteem and QOL. This work reinforces the progress made to date and provides new results that highlight the benefits of music therapy for FCGs of PWD.

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How Do Military Family Caregivers Who Completed a Supportive Intervention Differ From Those Who Dropped Out?

Background. To create efficacious interventions for military family caregivers (MFCs), it is important to understand the characteristics and predictors of completers and dropouts of newly developed supportive interventions. Aim. The purpose of this study was to examine completion patterns in MFCs enrolled in an educational intervention feasibility study. Method. Baseline data are presented from MFC completers (n = 64) and dropouts (n = 60) of a national feasibility study for an innovative intervention. Measures include depression (Patient Health Questionnaire-2), anxiety (Generalized Anxiety Disorder-7), somatic symptoms (Patient Health Questionnaire-15), quality of life (World Health Organization Quality of Life-Brief), relationship satisfaction (Relationship Assessment Scale), and military care recipient number of injuries. Analysis of variance was used to evaluate differences between completers and dropouts and logistic regression was used to identify predictors of intervention completion. Results. Results indicated that MFCs with greater anxiety, χ2(3) = 10.33, p = .02; depression, χ2(1) = 8.18, p = .004; somatic symptoms, F(1, 106) = 6.26, p = .01; care recipient number of injuries, F(1, 118) = 16.31, p < .001; lower general satisfaction with treatment, F(1, 96) = 4.34, p = .04; and lower satisfaction with accessibility and convenience with treatment, F(1, 89) = 4.18, p = .04, were significantly more likely to complete the intervention. After multivariate analysis, the sole predictor of intervention completion was the number of care recipients' injuries, χ2(6) = 14.89, N = 77, p < .05. Conclusions. Overall, findings indicate that MFCs who were more "at risk" were more likely to complete the intervention. Findings present patterns of intervention completion and provide insight on areas in need of further investigation on intervention development supporting the needs of MFCs.

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Family Caregiving for Older Adults

Family members are the primary source of support for older adults with chronic illness and disability. Thousands of published empirical studies and dozens of reviews have documented the psychological and physical health effects of caregiving, identified caregivers at risk for adverse outcomes, and evaluated a wide range of intervention strategies to support caregivers. Caregiving as chronic stress exposure is the conceptual driver for much of this research. We review and synthesize the literature on the impact of caregiving and intervention strategies for supporting caregivers. The impact of caregiving is highly variable, driven largely by the intensity of care provided and the suffering of the care recipient. The intervention literature is littered with many failures and some successes. Successful interventions address both the pragmatics of care and the emotional toll of caregiving. We conclude with both research and policy recommendations that address a national agenda for caregiving.

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Elements of Social Convoy Theory in Mobile Health for Palliative Care: Scoping Review

Background: Mobile health (mHealth) provides a unique modality for improving access to and awareness of palliative care among patients, families, and caregivers from diverse backgrounds. Some mHealth palliative care apps exist, both commercially available and established by academic researchers. However, the elements of family support and family caregiving tools offered by these early apps is unknown.; Objective: The objective of this scoping review was to use social convoy theory to describe the inclusion and functionality of family, social relationships, and caregivers in palliative care mobile apps.; Methods: Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review guidelines, a systematic search of palliative care mHealth included (1) research-based mobile apps identified from academic searches published between January 1, 2010, and March 31, 2019 and (2) commercially available apps for app stores in April 2019. Two reviewers independently assessed abstracts, app titles, and descriptions against the inclusion and exclusion criteria. Abstracted data covered app name, research team or developer, palliative care element, target audience, and features for family support and caregiving functionality as defined by social convoy theory.; Results: Overall, 10 articles describing 9 individual research-based apps and 22 commercially available apps were identified. Commercially available apps were most commonly designed for both patients and social convoys, whereas the majority of research apps were designed for patient use only.; Conclusions: Results suggest there is an emerging presence of apps for patients and social convoys receiving palliative care; however, there are many needs for developers and researchers to address in the future. Although palliative care mHealth is a growing field, additional research is needed for apps that embrace a team approach to information sharing, target family- and caregiver-specific issues, promote access to palliative care, and are comprehensive of palliative needs.

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Effects of Accessible Health Technology and Caregiver Support Posthospitalization on 30-Day Readmission Risk: A Randomized Trial

Patients with chronic illness often require ongoing support postdischarge. This study evaluated a simple-to-use, mobile health-based program designed to improve postdischarge follow-up via (1) tailored communication to patients using automated calls, (2) structured feedback to informal caregivers, and (3) automated alerts to clinicians about urgent problems. A total of 283 patients with common medical diagnoses, including chronic obstructive pulmonary disease, coronary artery disease, pneumonia, and diabetes, were recruited from a university hospital, a community hospital, and a US Department of Veterans Affairs hospital. All patients identified an informal caregiver or "care partner" (CP) to participate in their postdischarge support. Patient-CP dyads were randomized to the intervention or usual care. Intervention patients received weekly automated assessment and behavior change calls. CPs received structured e-mail feedback. Outpatient clinicians received fax alerts about serious problems. Primary outcomes were 30-day readmission rate and the combined outcome of readmission/emergency department (ED) use. Information about postdischarge outpatient visits, rehospitalizations, and ED encounters was obtained from medical records. Overall, 11.4% of intervention patients and 17.9% of controls were rehospitalized within 30 days postdischarge (hazard ratio [HR]: 0.59; 95% confidence interval [CI]: 0.31–1.11; p = 0.102). Compared to intervention patients with other illnesses, those with pulmonary diagnoses generated the most clinical alerts (p = 0.004). Pulmonary patients in the intervention group showed significantly reduced 30-day risk of rehospitalization relative to controls (HR: 0.31; 95% CI: 0.11–0.87; p = 0.026). The CP intervention did not improve 30-day readmission rates overall, although post hoc analyses suggested that it may be promising among patients with pulmonary diagnoses.

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The Effect of National Family Caregiver Support Program Services on Caregiver Burden

Extant evidence on the effectiveness of caregiver programs in alleviating caregiver burden is mixed, underscoring the need for further investigations. This study evaluated the effect of the National Family Caregiver Support Program (NFCSP) educational services and respite care on caregiver burden. We used survey data from caregivers assigned to program (n = 491) or comparison (n = 417) group based on their reported use of NFCSP services. Adjusted difference-in-differences (DiD) analysis found an increase in mean burden scores for both groups from baseline to 6 or 12 months. Among program caregivers receiving ≥4 hr of NFCSP respite care per week (n = 307) and matched comparisons (n = 370), burden scores decreased slightly for program caregivers (-0.095 points), but increased for comparison caregivers (+0.145 points). The DiD (0.239 points) was not statistically significant. More research is needed to determine the minimum amount of respite care needed to positively impact caregiver burden.

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The development of a family participatory dignity therapy programme for patients with haematologic neoplasms and their family caregivers in China: A feasibility study

Objective: To develop a communication prompt based on dignity therapy to facilitate effective conversations between patients with haematologic neoplasms and their family caregivers and to improve the programme and preliminarily explore the benefits and challenges of family participatory dignity therapy (FPDT).; Methods: A mixed-methods approach was applied to develop and revise the programme. The FPDT was developed and validated using the Delphi survey, and its further improvement was explored with a simple one-group pre- and post-trial and semi-structured in-depth interviews.; Results: Most of the FPDT items were endorsed by experts and patient-family dyads. The Content Validity Index was 93.6% in the first round of the Delphi survey and 100% in the second round. The "hope level," "spiritual well-being" and "general health" scores of pre- and post-testing increased from 33.60 ± 4.30 to 37.70 ± 5.10 (t = 3.99, p = .003); from 30.30 ± 3.65 to 38.80 ± 7.29(t = 4.13, p = .003); and from 41.67 ± 8.78 to 53.33 ± 8.05 (t = 3.50, p = .007) respectively. The qualitative data also indicated that the project was meaningful and well received.; Conclusions: We showed that FPDT was a valuable and feasible means of improving communication between patients with haematologic neoplasms and their family caregivers in China by raising the hope level and spiritual well-being and promoting general health.

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Coping with cognitive impairment and family caregiving: Introduction to the special section

Consistent with the long history within Psychology and Aging of publishing high impact articles on family caregiving, the current Special Section includes 5 articles that provide important advances, in knowledge and in methodological sophistication, to the study of cognitive difficulty, impairment and family caregiving. One study used daily diary data over 14 days to conduct microlongitudinal analyses of the prospective impact of everyday memory failures on negative affect and marital interactions in older couples. Also relying on dyadic data, 2 other articles addressed the impact of caregiving on family members, including a study of the effects of transitioning to family caregiving over time on well-being in older husbands and wives, and a comparison of primary and secondary caregivers. Together, these articles represent important methodological advances in terms of the use of longitudinal data to study the effects of transition to cognitive impairment and spousal caregiving within the couple, and the inclusion of multiple caregivers to illustrate the impacts of caregiving in the broader family. In addition, two articles examined issues in clinical intervention for caregivers. Both articles offer new insights about the effectiveness of caregiver interventions, with the former focusing on the relative merits of offering intervention components in a flexible way over the manualized approach, and the latter a comprehensive systematic review and meta-analysis to tease out the relative utility of different intervention characteristics and approaches, with a new lens to look at psychoeducational programs. The implications of these articles for family caregiving and further research advances are discussed. 

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Applying the concept of structural empowerment to interactions between families and home-care nurses

Interpretations of family carer empowerment in much nursing research, and in home-care practice and policy, rarely attend explicitly to families' choice or control about the nature, extent or length of their involvement, or control over the impact on their own health. In this article, structural empowerment is used as an analytic lens to examine home-care nurses' interactions with families in one Western Canadian region. Data were collected from 75 hrs of fieldwork in 59 interactions (18 nurses visiting 16 families) and interviews with 12 nurses and 11 family carers. Generally, nurses prioritized client empowerment, and their practice with families appeared oriented to supporting their role and needs as carers (i.e. rather than as unique individuals beyond the caring role), and reinforcing the caring role through validation and recognition. Although families generally expressed appreciation for these interactions, a structural empowerment lens illustrates how the broad context of home care shapes the interpretation and practice of empowerment in ways that can, paradoxically, be disempowering for families. Opportunities to effectively support family choice and control when a client is being cared for at home are discussed.

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An Informal Carer Hub to Support Carers Looking After COPD Patients in the UK and Netherlands

In the UK, about 3 million people live with Chronic Obstructive Pulmonary Disease (COPD). Informal carers such as family and friends play a vital role in promoting well-being among older adults suffering from COPD. However, difficulties experienced by caregivers are increasing and affecting their quality of life. New technologies and innovations such as m-health have the potential in reducing the burden of these carers. In this paper, we propose an informal carer hub (ICH), which is part of the WELCOME EU project to help informal carers better manage COPD patients in two European countries: the UK and the Netherlands. The acceptability of the system has been tested by making use of a modified version of the technology acceptance model (TAM 3). The aim of this study was to ensure that the proposed informal carer application is easy to learn, effective to use and acceptable from the informal carers’ perspectives. 

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Typology of Technology-Supported Dementia Care Interventions From an In-Home Telehealth Trial

Identifying the needs of dementia caregivers is critical for supporting dementia home care. This study identified a typology of expert interventions delivered to dementia caregivers during an innovative telehealth trial that used in-home video recordings to directly observe care challenges. Qualitative content analysis was used to analyze narrative notes describing interventions that were developed based on video data submitted by 33 caregiver–care recipient dyads. Two major themes emerged: education and skills for dementia care and caregiver support. Ten subthemes included education and skills related to: behavioral and psychological symptoms of dementia, disease expectations, safety, activities of daily living, medical care optimization, and medication utilization and caregiver support related to: respite, positive reinforcement, social and financial support, and self-care. Families providing in-home dementia care experience a wide range of care challenges. By using video data, dementia care experts were able to witness and evaluate challenging care situations and provide individualized feedback. 

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Supporting Family Caregivers With Technology for Dementia Home Care: A Randomized Controlled Trial

Background and Objectives: The number of persons living with dementia (PLWD) in the United States will reach 16 million by 2050. Behavioral and psychological symptoms of dementia challenge family caregivers and contribute to negative caregiver outcomes such as burden and depression. Available technology can support the delivery of effective interventions to families providing dementia care at home. The Supporting Family Caregivers with Technology for Dementia Home Care (FamTechCare) randomized controlled trial evaluated the effects of a telehealth intervention on caregiver outcomes.; Research Design and Methods: The FamTechCare intervention provides tailored dementia-care strategies to in-home caregivers based on video recordings caregivers submit of challenging care situations. An expert team reviews the videos and provides individualized interventions weekly for the experimental group. In the telephone-support attention control group, caregivers receive feedback from an interventionist via the telephone based on caregiver retrospective recall of care challenges. Effects of the intervention on caregiver outcomes, including burden, depression, sleep disturbance, competence, desire to institutionalize the PLWD, and caregiver reaction to behavioral symptoms were evaluated by fitting linear mixed regression models to changes in the outcomes measured at 1 and 3 months.; Results: FamTechCare caregivers (n = 42) had greater reductions in depression (p = .012) and gains in competence (p = .033) after 3 months compared to the attention control group (n = 41). Living in rural areas was associated with a reduction in depression for FamTechCare caregivers (p = .002). Higher level of education was associated with greater improvements or lesser declines in burden, competence, and reaction to behavioral symptoms for both the FamTechCare and attention control caregivers.; Discussion and Implications: This research demonstrated benefits of using available technology to link families to dementia care experts using video-recording technology. It provides a foundation for future research testing telehealth interventions, tailored based on rich contextual data to support families, including those in rural or remote locations.

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Psychosocial Interventions for Informal Caregivers of Lung Cancer Patients: A Systematic Review

Objective: Caregivers of patients with lung cancer often face physical, emotional, and financial distress, which not only negatively affects the caregivers' mental health and quality of life but may also impact patients' well-being. The purpose of this systematic review is to examine the content, delivery, and efficacy of psychosocial interventions targeting caregivers of lung cancer patients.; Methods: Studies included in this systematic review assessed psychosocial interventions for caregivers of lung cancer patients that were published in English between January 2009 and December 2017. These interventions focused on burden, mental health, quality of life, self-efficacy, and/or coping as outcome measures. CINAHL, PubMed, PsycInfo, Science Direct, and Web of Science databases were searched using the terms (lung cancer OR lung neoplasms OR thoracic cancer) AND (caregiver OR caregiving) AND (intervention OR program) to systematically review the relevant literature on this topic.; Results: From the 22 studies included in this systematic review, interventions were classified into four categories: communication-based interventions, coping skills training interventions, multicomponent interventions, and stress reduction interventions. The majority of the interventions (especially communication-based and multicomponent) led to improvement, albeit not always statistically significant, in one or more outcomes; however, the most frequently reported improvements included, burden, distress, anxiety, depression, overall quality of life, self-efficacy, and coping abilities.; Conclusions: The unmet needs of informal caregivers of lung cancer patients have a significant impact on their mental health and quality of life, but this burden can be alleviated by psychosocial interventions that offer appropriate support, education, and resources.

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Process Evaluation of Nurse-Led Online Self-Management Support for Family Caregivers to Deal With Behavior Changes of a Relative With Dementia (Part 1): Mixed Methods Study

Background: Coping with behavioral changes is a daily challenge for family caregivers in all phases of dementia, and assistance is needed for it. An online self-management support intervention was therefore developed and conducted involving the following elements: (1) email contact with a specialized dementia nurse, (2) online videos, and (3) e-bulletins containing information about behavior changes and how to manage them.; Objective: The aim of this study was to understand (1) family caregivers' actual use of various elements of the online self-management support, (2) family caregivers' evaluation and satisfaction with the various elements, and (3) nurses' usage and evaluations of the online support through the tailored email contacts.; Methods: A mixed methods design was used in this process evaluation, combining quantitative and qualitative methods including analyses of dementia nurses' registration forms, the number of clicks on online videos and e-bulletins, evaluation questions answered by family caregivers in a survey questionnaire, semistructured interviews with family caregivers and nurses, and analysis of the content of the email contacts.; Results: The actual use of various elements of the online self-management support by family caregivers varied: 78% (21/27) of family caregivers had an email contact with the specialist nurse, 80% (43/54) of family caregivers clicked on an online video, and 37% (30/81) clicked on an e-bulletin. Family caregivers showed positive evaluations and satisfaction. The tailor-made approach in the personal email contacts in particular was valued by the family caregivers. Nurses' evaluations about providing self-management support online were mixed as it was a relatively new task for them.; Conclusions: An important insight is that not all participants made optimum use of the various elements of the intervention. Nurses also said that the email contacts were more often used to express feelings about coping with behavioral changes. More research is needed to investigate the reasons why people accept, adopt, and adhere to online interventions to reduce cases where they are not used and to back them up appropriately with tailored (online) information and advice for their personal situations.

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Portrait of a Caregiver: Ethnodrama Development and Its Influence on Caregiver Well-Being

Background and Objectives: The majority of long-term care needs are placed upon family members who often receive minimal support. In this study, we collaborate with family caregivers to create an ethnodrama about their experience and assess outcomes of participation, including caregiver well-being.; Methods: Participants met over 4 months to discuss their roles as informal caregivers. Discussions were analyzed in a two-phase process and themes were developed into a script. Member checks included script review and revisions, culminating in viewing a professional performance of the play followed by a post-performance discussion and reflection. Data were gathered at six timepoints to assess caregiver well-being and longitudinal analysis was used to assess change during the course of the intervention.; Results: Twenty-two caregivers completed intervention activities. Participant reactions to the process evolved overtime, from an initial hesitance about what individuals had to offer leading to an acknowledgement of feeling heard and a desire to help others. Caregivers had high levels of burden and positive perceptions towards caregiving. Those with high levels of self-rated health had the lowest levels of burden and the most positive perceptions of caregiving.; Discussion and Implications: Developing an ethnodrama in partnership with caregivers is a unique and feasible method of caregiver support, mentoring, reflexivity, and meaning making. Promoting caregiver health early in the caregiving trajectory has the potential of reducing burden and elevating positivity towards caregiving.

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Outcomes of art therapy and coloring for professional and informal caregivers of patients in a radiation oncology unit: A mixed methods pilot study

Purpose: Caring for cancer patients can be highly stressful for both family caregivers and oncology professionals. These high levels of stress can lead to poorer patient outcomes and increased risk of health problems for the caregivers themselves. Art therapy may help these caregivers as art-making can be a relaxing and enjoyable form of self-expression and art therapists can support individuals in expressing and processing challenging emotions. Research on art-making or art therapy with caregivers of cancer patients has shown some positive results, but its interpretation is limited by the use of multifaceted interventions.; Method: In this mixed-methods study we compared two brief arts-based approaches for both professional and informal caregivers: single sessions of coloring or open-studio art therapy, with a 45-minute session each. Assessments included self-reports of affect, stress, self-efficacy, anxiety, burnout arnd creative agency alongside salivary biomarkers before and after the session. Open-ended questions, field notes and observations formed the qualitative part of the study.; Results: Thirty-four professional (n=25) and informal (n=9) caregivers participated. Participants in both conditions showed increases in positive affect, creative agency, and self-efficacy and decreases in negative affect, anxiety, perceived stress, and burnout. Participants in both conditions expressed enjoyment, relaxation, appreciation of time away from stressors, creative problem solving, a sense of flow, and personal and existential insight. The two approaches also elicited distinct experiences with participants reporting that they found improved focus in coloring and appreciated the support and freedom of expression in open studio art therapy.; Conclusions: These findings suggest that even brief art-making interventions can be beneficial for stressed caregivers of cancer patients. As experience with art-making increased the impact, repeated sessions may be even more useful. We recommend that oncology units have dedicated studio spaces with therapeutic support and different forms of art-making available to meet individual caregiver needs.

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An Online Minimally Guided Intervention to Support Family and Other Unpaid Carers of People With Dementia: Protocol for a Randomized Controlled Trial

Background: About three-quarters of people with dementia live in their own homes, with help from family members and/or other unpaid carers, such as friends or neighbors. Often, unpaid carers themselves experience negative consequences, such as stress, burden, and symptoms of depression or anxiety. Research has shown that these consequences can be alleviated by psychosocial and psychological interventions. Moreover, there are indications that those interventions can be effective when offered online.; Objective: This paper describes the protocol of a randomized controlled trial (RCT) that will take place in the Netherlands to evaluate the effectiveness of iSupport, a minimally guided, internet-based intervention to improve carers' mental health and coping resources.; Methods: A superiority two-arm RCT comparing the effects of the online support program with a waiting list control condition will be carried out in the Netherlands. The iSupport intervention was developed by the World Health Organization and is based on cognitive behavioral therapy principles. It has five main themes divided into 23 lessons. Carers can pick and choose which lessons they want to complete. We aim to recruit 200 unpaid carers. The experimental group (n=100) will be provided with access to the intervention for 3 months following randomization; those in the waiting list control group (n=100) will be granted access to the intervention after 3 months. Assessments will be conducted at baseline (T0), 3 months after baseline (post intervention, T1), and 6 months after baseline (follow-up, T2). The primary outcome is perceived stress, measured by the Perceived Stress Scale. Secondary outcomes are symptoms of depression and anxiety, caregiver burden, sense of competence, self-efficacy, mastery, and carers' attitudes toward dementia and their person-centered approach (ie, to what extent carers tailor the provided care to the interest, needs, and history of the person with dementia).; Results: Recruitment for the trial started in January 2019. As of July 2019, we have enrolled 120 participants. Data collection is expected to be completed by March 2020. Once all the data have been collected, we will conduct the data analyses between April and May 2020. We aim to publish our results in a manuscript by June 2020.; Conclusions: Online interventions have shown promising results in improving the mental health of carers of people with dementia. Additionally, online interventions may overcome accessibility barriers. If successful, this intervention will have important potential for implementation as a public health intervention, since costs and support by trained staff are minimal.; Trial Registration: Netherlands Trial Register (NTL) NL6417; https://www.trialregister.nl/trial/6417.; International Registered Report Identifier (irrid): DERR1-10.2196/14106.; ©Ángel C Pinto-Bruno, Anne Margriet Pot, Annet Kleiboer, Rose-Marie Droes, Annemieke van Straten. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 10.10.2019.

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Occupational therapy for people with dementia and their family carers provided at home: a systematic review and meta-analysis

Objective: To determine the effect of occupational therapy provided at home on activities of daily living, behavioural and psychological symptoms of dementia (BPSD) and quality of life (QOL) for people with dementia, and the effect on family carer burden, depression and QOL.; Design: Systematic review and meta-analysis.; Methods: Eight databases were searched to February 2018. Randomised controlled trials of occupational therapy delivered at home for people with dementia and their family carers that measured ADL, and/or BPSD were included. Two independent reviewers determined eligibility, risk of bias and extracted data.; Results: Fifteen trials were included (n=2063). Occupational therapy comprised multiple components (median=8 sessions). Compared with usual care or attention control occupational therapy resulted in improvements in the following outcomes for people with dementia: overall ADL after intervention (standardised means difference (SMD) 0.61, 95% CI 0.16 to 1.05); instrumental ADL alone (SMD 0.22, 95% CI 0.07 to 0.37; moderate quality); number of behavioural and psychological symptoms (SMD -0.32, 95% CI -0.57 to -0.08; moderate quality); and QOL (SMD 0.76, 95% CI 0.28 to 1.24) after the intervention and at follow-up (SMD 1.07, 95% CI 0.58 to 1.55). Carers reported less hours assisting the person with dementia (SMD -0.33, 95% CI -0.58 to -0.07); had less distress with behaviours (SMD -0.23, 95% CI -0.42 to -0.05; moderate quality) and improved QOL (SMD 0.99, 95% CI 0.66 to 1.33; moderate quality). Two studies compared occupational therapy with a comparison intervention and found no statistically significant results. GRADE ratings indicated evidence was very low to moderate quality.; Conclusions: Findings suggest that occupational therapy provided at home may improve a range of important outcomes for people with dementia and their family carers. Health professionals could consider referring them for occupational therapy.; Prospero Registration Number: CRD42011001166.

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Meeting centres support programme highly appreciated by people with dementia and carers: a European cross-country evaluation

Background: The Meeting Centres Support Programme (MCSP) offers a combined approach to providing practical, emotional and social support to people living with mild to moderately severe dementia and their family carers in the community. Methods: A mixed methods explanatory design was used. The evaluation took place within the framework of the international Joint Programme - Neurodegenerative Disease Research (JPND) - MEETINGDEM study in nine Meeting Centres in Italy, Poland and the United Kingdom. Eighty-seven people with dementia and 81 family carers completed a user evaluation survey after three months and 83 people with dementia and 84 carers after 6 months of participation in MCSP. Thirty-two people with dementia and 30 carers took part in focus groups after nine months. Results: The percentage of people with dementia who were very satisfied with the programme increased significantly over time (p = 0.05). The majority of carers reported that they felt less burdened after three months of participation in MCSP (48.1% much less; 35.4% a little less). After six months, this percentage increased significantly to 91% (p = 0.04, 57.7% much less; 33.3% little less). Focus group analysis showed that people with dementia and carers in all countries/centres improved their ability to maintain emotional balance. Conclusions: The MCSP is highly appreciated by people with dementia and carers in all countries and it confirms the results of previous research into MCSP in the Netherlands. Our findings indicate that MCSP is a model that can help its users to increase their capacity to deal with the challenges caused by dementia and can promote emotional balance.

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Carers and Physical Activity Policy Briefing

This policy briefing is designed for professionals to share some initial insight from our work with Sport England. Further research on carers and inactivity including best practice examples and recommendations will be released in a report later in 2020.

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Implementing Caregiver Support Programs in a Regional Stroke System

Background and Purpose- Family caregivers play a central role in the recovery of people with stroke. They need support to optimize the care they provide and their own health and well-being. Despite support from the literature and best practice recommendations, healthcare systems are not formally adopting caregiver programs. This study aimed to describe system-level facilitators and barriers to caregiver support program implementation in a regional stroke system. Methods- Using a qualitative descriptive study design, focus groups were conducted with regional rehabilitation specialists, education coordinators, community and long-term care specialists, and regional/district program directors. Semi-structured interviews were conducted with regional medical directors, health professionals providing stroke care in acute care, rehabilitation and community settings, regional health executives, and primary care leaders. Data were analyzed using inductive thematic analysis. Results- Four focus groups (n=43) and 29 interviews were conducted. We identified 4 themes related to caregiver program implementation: (1) establishing the need for caregiver education and support in an integrated healthcare system; (2) incorporating caregiver programs into the system of care across the care continuum; (3) uncertainty regarding ownership and responsibility for implementation; and (4) addressing regional variations related to access, availability, and culture. Conclusions- This study provides a comprehensive understanding of organization and system-level considerations for implementing caregiver programs in a regional stroke system. Program implementation requires evidence to establish the need for caregiver programs, practical strategies, and establishing ownership to incorporate programs into existing healthcare systems, and consideration of regional variations across healthcare systems. Ultimately, adopting programs to support caregivers will improve recovery in people with stroke and caregiver well-being.

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Helping Hispanic Family Caregivers of Persons With Dementia "Get the Picture" About Health Status Through Tailored Infographics

Background and Objectives Caregivers need to understand their health status and the disabilities of the care recipient to engage in effective health management. Infographics tailored with personal health data are a promising approach to facilitating comprehension, particularly for individuals with low health literacy/limited English proficiency. Such approaches may be especially important for dementia caregivers given the high care burden. Research Design and Methods Guided by the Health Belief Model and the Data-Frame Theory of Sensemaking, we conducted iterative participatory design sessions with Hispanic family caregivers (N = 16) of persons with dementia. We created multiple prototype infographic designs to display scores on validated instruments of topics such as caregiving burden, overall health, and psychological distress. We retained and refined designs participants judged to be easily comprehensible. Analysis focused on identifying the graphical elements that contributed to the comprehensibility of designs and on evaluating participants' reactions to the designs. Results Successful infographics used intuitive scaling consistent with caregivers' perspective of dementia as inevitable decline. Participants reacted to infographics by describing the self-management actions they would take to address the health issue at hand. Discussion and Implications Tailored infographics supported caregivers' comprehension of their health status and served as cues to engaging in self-management. As such, they should be presented in the context of informational support that can facilitate selection of appropriate next steps. This can mitigate the potential mental and physical health consequences of caregiving and enable caregivers to continue to care for their relatives with dementia with less damage to their own well-being. 

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Findings From a Real-World Translation Study of the Evidence-Based "Partners in Dementia Care"

Background and Objectives: Numerous non-pharmacological programs for family caregivers and persons with dementia (PWDs) have been found efficacious in randomized controlled trials. Few programs have been tested in translation studies that assess feasibility and outcomes in less-controlled, real-world implementations. This translation study tested the impact of the partnership version of BRI Care Consultation, "Partners in Dementia Care (PDC)," on outcomes for PWDs and their family/friend caregivers. PDC was delivered via partnerships between the Louis Stokes Department of Veterans Affairs Medical Center and the Greater East Ohio Alzheimer's Association Chapter and the Western Reserve Area Agency on Aging. PDC is a personalized coaching program done by telephone, e-mail, and regular mail.; Research Design and Methods: For this translation study, the program was implemented in a manner that mirrored a non-research implementation. The study sample included 148 caregivers and 84 PWDs who used PDC for 12 months. Research data came from 2 structured telephone interviews, one before program implementation and a follow-up after program completion. PWDs and caregivers averaged 14 telephone contacts with Care Consultants over the 12-month study period, and 12 behavioral action steps to address problems or concerns.; Results: Repeated measures ANOVAs showed the use of PDC was related to significant improvements across several outcomes for PWDs and caregivers, with greater benefits in more difficult caregiving situations. Caregivers had decreased levels of isolation, physical health strain, unmet needs; and increased confidence in caregiving capacity, informal helpers, and support service use. PWDs had decreased embarrassment about memory problems and unmet needs; and increased informal support and community service use.; Discussion and Implications: Overall, improved outcomes for PWDs and caregivers in this translation study were similar to findings from previous randomized trials, and affirmed the value of the program when delivered as a regular service offering by health care and community service organizations.

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E-learning as valuable caregivers' support for people with dementia - A systematic review

Background: Present demographic trends show a considerable rise in elderly populations with aging disorders, such as dementia. The current article focused on the exploitation of e-learning as an informal support for caregivers of people with dementia and considered its benefits and limitations to provide proper and relevant care for this target group of people as well as maintain the quality of life of their caregivers.; Methods: The methodology of this study is based on a literature review of accessible peer-review articles from three recognized databases: Web of Science, Scopus, and PubMed. The findings of the selected studies were compared and evaluated.; Results: The findings showed that e-learning educational programs/courses helped caregivers feel more confident about dementia care, reduced their perceived stress and enhanced their feelings of empathy, understanding and concern.; Conclusions: The findings of this study reveal that the exploitation of e-learning as a support tool, especially for informal caregivers, in the management of dementia may be a promising method, but its implementation requires professional training of informal caregivers in the use of this technology. More evidence-based studies are needed on this topic.

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Effect of the Integrated Prospective Payment Program on Family Members' Knowledge and Acceptance of Hospice Care of Patients on Prolonged Mechanical Ventilation

Background: We sought to evaluate the effect of an integrated prospective payment program (IPP) on knowledge of hospice care and willingness to participate in hospice care among family members of patients on prolonged mechanical ventilation (PMV).; Methods: Between November 2013 and April 2014, we used paper-based survey questionnaires from 64 institutions to evaluate knowledge, willingness, and related factors among the main caregivers of patients on PMV regarding hospice care and to determine whether their decisions for the patients were affected by the IPP.; Results: The average ages of the respondents and patients on PMV were 51.9 y and 70.8 y respectively; 70.6% of the respondents knew about the Hospice Palliative Care Act (HPCA), and 42.3% of the medical staff had introduced hospice care-related information to patients and caregivers in Taiwan. Among the caregiver respondents, 67.6% agreed to write a letter of intent regarding the choice of hospice care or limited life-sustaining treatment. In total, 66.2% (16.1 + 50.1%) of the respondents agreed to hospice care for their family members (ie, the patients on PMV) when the condition was terminal. The factors of greater HPCA knowledge among the patients on PMV were IPP participation, female sex, and coma status. Factors leading to higher levels of HPCA knowledge included age ≥ 65 y being married, higher income, awareness of the law, and being introduced to hospice care by medical staff.; Conclusions: High levels of hospice care knowledge were unrelated to willingness to participate. HPCA knowledge was greater in the IPP group than in the non-IPP group; however, there was no significant difference in the willingness to agree to hospice care. It is recommended that individuals be encouraged to express their medical decisions.

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The effect of psychosocial support on caregivers' perceived criticism and emotional over-involvement of persons with dementia: an assessor-blinded randomized controlled trial

Background: Many relatives of close family members suffering from dementia have taken on the caregiver role. While intervention studies have revealed promising results on caregiver burden, distress, and depression, there is a lack of knowledge about how caregivers' perceived relationship with their ill family member influences the burden of care. This study examined whether a psychosocial intervention influenced this perceived relationship from the caregivers' perspective. We also explored whether the caregivers' perception of the care receiver's attitude and behavior changed over time, and whether caregiver stress and mood differed following the intervention.; Methods: The participating caregivers and care receivers were randomly assigned to a psychosocial intervention comprising education about dementia, counselling and group sessions, or to treatment as usual. The study investigated caregivers' experience of expressed emotion using the Felt Expressed Emotion Rating Scale (FEERS), a self-report questionnaire that captures caregivers' perception of criticism (CC) and emotional over-involvement (EOI) exhibited by the family members with dementia.; Results: A total of 208 dyads were enrolled in the study. There were no significant differences between the intervention and control groups in the studied variables. Caregivers' perception of CC and EOI was low but fluctuated somewhat, whereas their mood and stress level were stable during the follow-up period.; Conclusions: According to the FEERS, the intervention did not influence caregivers' perception of CC and EOI, and there was no difference between the intervention and control groups regarding caregivers' perceived relationship. Despite the increased symptoms of dementia, caregivers' level of distress and mood remained stable, and they seemed to maintain a positive perception of the quality of their relationship with the care receiver.; Trial Registration: Clinical.Trials.gov Sept. 2009, NCT01287767.

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The Effect of a Nurse-Led Cognitive Behavioral Protocol on Depressive Symptoms and Coping Strategies of Dementia Caregivers

Background: Family caregivers of patients with dementia (PWD) often experience depressive symptoms and use poor coping strategies. Cognitive behavioral interventions may enhance positive appraisals of caregiving-related issues and the utilization of active coping strategies among caregivers, which may help prevent caregiver depression. However, there is a shortage of primary, community-based mental health services in China, and little research has been conducted on the effect of nurse-led mental health programs in this population.; Purpose: This study explored the effect of a nurse-led cognitive behavioral intervention on depressive symptoms and coping strategies among family caregivers of PWD in China.; Methods: This randomized controlled trial used data from a sample of 112 caregivers screened from 276 potential participants in a city in southeastern China. The sample was randomly assigned to an intervention group (n = 56) and a control group (n = 56). The intervention group received five monthly in-home, nurse-led cognitive behavioral sessions and telephone consultations after each session. The control group received five monthly, short, general conversations with nurse interventionists at the participants' homes, in the hospital, or via telephone. Depressive symptoms, coping strategies, and the demographics of caregiving dyads were collected at Time 1 (baseline), Time 2 (the end of the 5-month intervention), and Time 3 (2-month follow-up). IBM SPSS Statistics Version 19.0 was used for data analysis.; Results: Eighty-two participants (intervention group: n = 47, control group: n = 35) completed the three evaluations. No significant group differences were found in baseline characteristics between the two groups. The general linear model repeated-measures analysis of variance indicated a significant difference in depressive symptoms and active coping between groups over time, with p < .001 for the interaction between depressive symptoms and groups and p < .01 for the interaction between active coping and groups. A similar result did not occur for passive coping. The t tests further supported a significant interventional effect on participants' depressive symptoms and active coping.; Conclusions/implications For Practice: This nurse-led cognitive behavioral intervention was effective in decreasing depressive symptoms and improving active coping among study participants. The findings suggest the improvement of mental health services and social policies in China to support family caregivers of PWD.

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Evaluation of the Carers in Employment (CiE) Project

This government-funded and independently evaluated project, which ran from 2015-2017, looks at what works to support carers to remain or return to the workplace. The Carers in Employment (CiE) project took place in nine local authorities, who were encouraged to develop local solutions to support carers to remain in or return to work; work involving employers was found to be a central to the project’s success.

This is the evaluation report for the project. It finds that, out of the nearly three thousand carers who took part, CiE sites said that they had supported nearly 60% to stay in work. It is hoped that the findings of the independent evaluation will make an important contribution to ensuring that carers’ needs are reflected in future employment-related carer policy and practice. It is also hoped that the project will encourage the country’s carers to be part of the world of work and also to encourage more employers to be carer-friendly.

The work was commissioned by the Department of Health (now the Department of Health and Social Care), the Department for Work and Pensions and the Government Equalities Office. The Social Care Institute for Excellence (SCIE) co-ordinated and supported the delivery of the project. The Institute for Employment Studies (IES) was commissioned to undertake an independent evaluation.

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Development of a dyadic sleep intervention for Alzheimer's disease patients and their caregivers

Purpose: This study aimed to refine a behavioral sleep intervention program targeting patients with Alzheimer's disease and their caregivers. Methods: In this case series, key components of the sleep program were built upon previous intervention studies of patients with cognitive impairment/dementia. The intervention consisted of five weekly sessions covering sleep hygiene, sleep compression, stimulus control, daily walking/light exposure, relaxation/mindfulness, and caregiver training to manage patients' behavioral problems. The materials and structure were iteratively refined based on feedback from caregivers and sleep educators. Sleep diaries were used to evaluate sleep outcomes. Results: Five out of six enrolled dyads completed the sessions. Several revisions were made during testing: the last session was changed from telephone to in-person; some components (e.g., sleep scheduling, mindfulness) were rearranged within or across sessions; sleep educator guidelines for sleep scheduling, light exposure, and walking were revised. After the fifth dyad, no additional issues were identified by the caregiver or the sleep educator. Four patients and three caregivers had improved sleep at the last session. Conclusions: The iterative refinement process was successful in finalizing the intervention program, with evidence of sleep improvements. Formal pilot testing of the program will provide further information on feasibility and effectiveness. IMPLICATIONS FOR REHABILITATION Our dyadic behavioral sleep program can be tailored to various types of sleep problems among patients with Alzheimer's disease and their family caregivers, with the goal of improving daytime function by reducing sleep disturbances at night. Caregiver training and participation of both members of the dyad in sleep management may benefit the patients' sleep and other health outcomes, reduce caregiver stress and burden, and ultimately delay or prevent institutionalization of Alzheimer's disease patients.

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Development and Implementation of the Family Caregiver Decision Guide

Care provided by family is the backbone of palliative care in Canada. The critical roles performed by caregivers can at the same time be intensely meaningful and intensely stressful. However, experiences of caregiving can be enhanced when caregivers feel they are making informed and reflective decisions about the options available to them. With this in mind, the purpose of this five-phase research project was to create a Family Caregiver Decision Guide (FCDG). The Guide entails four steps: thinking about the current caregiving situation, imagining how the caregiving situation may change, exploring available options, and considering best options if caregiving needs change. The FCDG was based on available evidence and was developed and refined using focus groups, cognitive interviewing, and a feasibility and acceptability study. Finally, an interactive version of the Guide was created for online use ( https://www.caregiverdecisionguide.ca ). In this article, we describe the development, evaluation, and utility of the FCDG.

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A Conceptual-Theoretical-Empirical Structure for the Study of Alzheimer Informal Caregivers and Home Health Care Nursing Services

The purpose of this article is to describe the process used to create a conceptual-theoretical-empirical structure for a proposed study of policies for home health care nursing services for informal caregivers of persons with Alzheimer disease. The process consisted of linkage of the Conceptual Model of Nursing and Health Policy with Roy's Adaptation Model to guide derivation of a middle-range theory of home health care nursing services for Alzheimer disease informal caregiving, and selection of appropriate empirical research methods.

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Comparison of financial support for family caregivers of people at the end of life across six countries: A descriptive study

Background: Family caregivers of people at the end of life can face significant financial burden. While appropriate financial support can reduce the burden for family caregivers, little is known about the range and adequacy of financial support, welfare and benefits for family caregivers across countries with similarly developed health care systems. Aim: The aim is to identify and compare sources of financial support for family caregivers of people approaching the end of life, across six countries with similarly performing health care systems (Australia, Canada, Ireland, New Zealand, the United Kingdom and the United States). Design: A survey of financial support, welfare and benefits for end of life family caregivers was completed by 99 palliative care experts from the six countries. Grey literature searches and academic database searches were also conducted. Comparative analyses of all data sources documented financial support within and between each country. Results: Some form of financial support for family caregivers is available in all six countries; however the type, extent and reach of support vary. Financial support is administered by multiple agencies, eligibility criteria for receiving support are numerous and complex, and there is considerable inequity in the provision of support. Conclusion: Numerous barriers exist to the receipt of financial support, welfare and benefits. We identified several areas of concern, including a lack of clarity around eligibility, inconsistent implementation, complexity in process and limited support for working carers. Nonetheless, there is significant potential for policymakers to learn from other countries' experiences, particularly with regard to the scope and operationalisation of financial support. 

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Caregivers Benefit from Massage: More Isn't Necessarily Better--Some Is Enough!

The article offers information related to informal caregivers who provide unpaid, informal care for family members or friends with temporary or permanent conditions. It mentions increasingly, massage-related research examining massage benefits for admitted patients or patient populations and also mentions the results of standardized assessment scales that used to collect data for analysis research.

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The care crisis in Spain: an analysis of the family care situation in mental health from a professional psychosocial perspective

The aim of this article is to investigate the importance of family care in mental health and identify the shortcomings of the Spanish model of health care for the mentally ill. The empirical process comprised three qualitative procedures involving 37 experts from different regions of Spain. In order to guarantee the rigor of the data, a social worker discussion group was set up to create an interview script. Interviews were then carried out with 22 professionals who take care of people with mental illness in various public facilities throughout the country. A second focal group met three times to validate the categorizations analyzed in the interviews. The results of the empirical process indicate a need to remodel the mental health care system, which can be described with reference to five critical characteristics: 1) a lack of financial and human resources for mental health, 2) a lack of effective coordination among all the institutions and authorities involved, 3) a lack of quality resources aimed at rehabilitation and social reintegration as alternatives to institutionalization, 4) a lack of integrated care, and 5) a lack of a common healthcare framework for all professional workers in all the regions. A remodeling of the system is necessary to enable the rehabilitation, recovery, empowerment and development of people with SMD and thus ease the burden and improve the quality of life of family caregivers.

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Cancer as Communal: Understanding Communication and Relationships from the Perspectives of Survivors, Family Caregivers, and Health Care Providers

With cancer increasing in prevalence and high priorities placed on concurrent oncological and palliative care to help meet the familial, spiritual, and individual needs of stakeholders in cancer, research is needed that assesses the factors that facilitate coping across stakeholders in cancer care. We were interested in synthesizing our understanding of communication and relationships among patients, caregivers, and providers based on the reasoning that illness is relational, but often conceptualized and researched from the individual perspectives of various stakeholders. The current study examined the experiences of relational and communication opportunities and challenges during cancer for current and former family caregivers, cancer survivors, and palliative and oncology health care practitioners. The thematic analysis of 30 semi-structured interviews revealed an overarching theme on the benefits of orienting toward cancer as communal, which was, in turn, facilitated or impeded by four additional themes/sets of behaviors: support, presence, perspective-taking, and reframing hope. Results of a cross-case data matrix analysis reveal that stakeholders in different roles experience qualitative differences in their experience of cancer as communal, isolated, or ambivalent. Implications for education, palliative care, and interventions are discussed.

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Balancing personal wishes and caring capacity in future planning for adults with an intellectual disability living with family carers

Most people with intellectual disabilities (IDs) live at home with family, and most carers and care recipients wish to continue this arrangement. However, despite worry about what will happen when carers are unable to continue caring, most families do not plan for the future. The Future Care Road Map (FCRM) pilot study sought to enhance future care planning for families of adults with ID. Twelve families were facilitated through the FCRM process to establish future care plans, including future living and care arrangements. The pilot successfully improved future planning, but readiness of families and facilitation were important to outcomes. Continued care within the family was the most common future wish of care recipients. However, caring capacity emerged as a pervasive theme. Ultimately, it may be the capacity of the family, services or individual with ID themselves to provide future care which determines how feasibly future wishes translate into future plans. 

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330 Insights into Dementia- An Integrated Care Approach to Family Support

Background The increase in the number of people with dementia in the coming years will be significant and could be as high as 132,000 people by 2041. There is a growing need for enhanced post diagnostic supports for patients living with dementia and their families. We identified the need for a localised educational resource for families and supportive others attending our specialist memory service Methods Staff from the Integrated Care Team, Specialist Memory Service and Primary Care were trained by the Alzheimer's Society of Ireland to deliver a 6 week 'Insights Into Dementia' carers course. Tutors and dementia advisors from the Alzheimer's Society of Ireland provided in-depth training prior to course delivery and feedback to the facilitators on a weekly basis. The course included advice and education on Dementia; Changing Relationships, Communication; Responding to changes in behaviour; Nutrition; Engaging in activities; Assisting with personal care and Safety in the home. Families gained advice regarding their self-care needs and learned how to access information and support.  All services involved worked together to identify, refer and support families with dementia in the local area. The group took place in an accessible location at a time which accommodated families to attend. Each course attendee completed a questionnaire prior to and after commencing the group. Results The group has delivered education and support to 48 families to date. Feedback from participants was very positive with self-reported increase in confidence, knowledge and awareness about dementia. Waiting time to access support has significantly decreased. Every course has led to a support group who meet up on a regular basis in their community. Conclusion This novel collaboration has become a key part of the integrated care pathway we have developed to support people living with dementia and their supportive others in our catchment area. The Integrated Care approach has served to enrich the programme and allow for timely signposting to localised supports. 

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333 A Transnational Effectiveness-Implementation Study of the Family Carer Decision Support Intervention to Improve End of Life Care in Long-Term Care

Background The Family Carer Decision Support (FCDS) intervention has been designed to inform family carers about end of life care options available to a person living with advanced dementia. The FCDS intervention demonstrated a statistically significant impact in reducing family carer decision uncertainty on establishing goals of care at the end of life and, improved family carer satisfaction on quality of care in a study conducted in the United Kingdom. Methods The aim of this research is to adapt the application of the FCDS for use in different countries. Funding supported through the EU Joint Programme – Neurodegenerative Disease Research (JPND) project has supported the scaling up of the FCDS transnationally in the United Kingdom; Republic of Ireland; Netherlands; Canada; Czech Republic ; and, Italy. Launched in April 2019, this presentation will report on present activities including: a) description of the FCDS intervention; b) strategy for implementing the FCDS in care homes; c) study design employed for the evaluation of the FCDS; and d) work packages and that will be deployed to achieve intended outcomes Results Expected project outcomes of this work will include a) develop guidelines to facilitate transnational use of the FCDS within care homes; (b) staff education material including web learning resources; (c) family carer informational material including web learning resources; (d) measures and tools to evaluate the uptake and outcome of the FCDS intervention; (e) establish a transnational FCDS community of practice across study care homes; (f) estimated costs of providing the FCDS intervention; (g) evidence of enhancing decision making among family members regarding resident care and satisfaction with care. Conclusion Recent research revealed that care home structures and staff play an important role in the successful implementation and adoption of innovations such as the FCDS intervention, this is further examined in this transnational study. 

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An Evaluation of the Information Sources of Cancer Patients' Relatives. A Prospective Survey

Patients followed up with a cancer diagnosis must be well-informed about cancer to be able to cope with it. Besides, informing the relatives of the cancer patients who are also experiencing the same process about the diagnosis and follow-up period of cancer is highly important. In the current study, it was aimed to evaluate the information sources about cancer which are referred to by relatives of cancer patients. Three hundred ninety-one cancer patient relatives were included in medical oncology clinic between May 1 and June 30, 2015. A questionnaire was applied to the participants, comprising 12 questions to elicit demographic information and 11 questions about the information sources to which they referred. The study included 183 female and 208 male participants with amean age of 47.9 +/- 13.6 years. While the oncologists were the primary information sources referred to by 87%, the Internet was the second most preferred information source by 72%. The websites most frequently referred were the official websites (70%), the websites of oncology associations (53%), and social networks and forums (32%). The primary factors affecting the Internet preference were age, education level, income level, and place of residence. The Internet was the second most referred information source about cancer by family caregivers following oncologists. Therefore, it is of crucial importance that physicians inform patients and their relatives comprehensively as well as guiding them to correct and reliable information sources.

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Caregiver outcomes of the REACH-HF multicentre randomized controlled trial of home-based rehabilitation for heart failure with reduced ejection fraction

Background: Caregivers frequently provide support to people living with long-term conditions. However, there is paucity of evidence of interventions that support caregivers in their role. Rehabilitation EnAblement in Chronic Heart Failure (REACH-HF) is a novel home-based, health-professional-facilitated, self-management programme for patients with heart failure (HF) and their caregivers. Methods: Based on the random allocation of individual adult patients with reduced ejection fraction (HFrEF) and left ventricular ejection fraction <45% within the past five years, the caregiver of patients was allocated to receive the REACH-HF intervention over 12 weeks (REACH-HF group) or not (control group). Caregiver outcomes were generic health-related quality of life (EQ-5D-5L), Family Caregiver Quality of Life Scale questionnaire (FamQol), Caregiver Burden Questionnaire HF (CBQ-HF), Caregiver Contribution to Self-care of HF Index questionnaire (CC-SCHFI) and Hospital Anxiety and Depression Scale (HADS). Outcomes were compared between groups at 4, 6 and 12 months follow-up. Twenty caregivers receiving REACH-HF were purposively selected for qualitative interviews at 4 and 12 months. Results: Compared with controls (44 caregivers), the REACH-HF group (53 caregivers) had a higher mean CC-SCHFI confidence score at 12 months (57.5 vs 62.8, adjusted mean difference: 9.3, 95% confidence interval: 1.8–16.8, p = 0.016). No significant between group differences were seen in other caregiver outcomes. Qualitative interviews showed that most caregivers who received the REACH-HF intervention made positive changes to how they supported the HF patient they were caring for, and perceived that they had increased their confidence in the caregiver role over time. Conclusion: Provision of the REACH-HF intervention for caregivers of HF patients improved their confidence of self-management and was perceived for some to be helpful in supporting their caregiver role.

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Family Caregivers' Experiences with Dying and Bereavement of Individuals with Motor Neuron Disease in India

Motor neuron disease (MND) is a progressive neurodegenerative disease. Ideal management plan in MND includes palliative care initiated from the time of diagnosis. At present, most of the neurodegenerative conditions are cared for at home. Neuropalliative care is an emerging concept in India and social workers are integral team members in this process. The primary aims of the study were to explore (a) the caregivers' experiences of the end-of-life stage, and (b) the sources of support for individuals and their caregivers with MND at the end-of-life stage. In-depth interviews were conducted with seven bereaved caregivers of individuals with MND from a national tertiary referral care center for neuropsychiatry in South India. Interviews were conducted either in person or by telephone. Thematic analysis was done using the constant comparative method. Major themes derived from the interviews were: (1) Transition from person to patient, (2) support, (3) death, and (4) impact on the caregivers. Mapping of themes identified Support received during advanced stages as the central theme influencing all other themes. The need for a care manager seems evident and is a role that can be effectively fulfilled by the care teams' social workers.

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Family carer and professional perceptions of the use of telehealth methodology for behavioural support for people with intellectual/developmental disabilities in the uk

Introduction: The use of telehealth to provide behavioural services for people with intellectual/developmental disabilities (IDD) is increasing. However, there are no prospective evaluations of stakeholder perspectives relating to this, which may have implications for uptake of such services. This study aimed to identify factors influencing family carer and professional willingness to use telehealth for behavioural support in the UK. Methods: A Delphi consultation was conducted in four rounds with two panels (professionals and family carers), aiming to reach consensus on the most influential advantages and disadvantages/barriers to participant's willingness to use telehealth. Results: Thirty‐six and 22 items reached consensus as being influential for professionals and family carers respectively. Factors identified by each panel differed, with professionals focusing on the logistics of support whilst family carers highlighted factors relating to the quality of support. A common solution to the barriers identified related to combining in‐person and telehealth methodology. Implications: A range of factors were identified that are influential to professional and family carer willingness to use telehealth for behavioural support. These factors suggest advantages to maximise and barriers to overcome in order to increase uptake of telehealth services in this field.

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Nurses striving to provide caregiver with excellent support and care at a distance: a qualitative study

BACKGROUND: In Norway, changes in life expectancy have led to increased attention to older people who are ageing at home, by means of home care services, adapted technology and informal caregivers. The caring situation has become difficult for many caregivers. The use of telecare has now offered them the possibility to receive support at home. The purpose of this study was to explore how nurses provide support and care at a distance, using a web camera and a web forum in a closed telecare network for caregivers to persons suffering from stroke and dementia. METHODS: The study had an explorative design with a qualitative approach. The data sources consisted of interviews with nurses and excerpts from posts in a closed telecare network. Content analysis was used to analyse the text from the interviews and the text from the web forum. RESULTS: The main theme, "Balancing asymmetric and symmetric relationships" described nurses' relationship with caregiver. Two categories, "Balancing personal and professional qualities" and "Balancing caregivers' dependence versus independence" were identified. The first describing the tension in their dialogue, the second describing how nurses provided the caregivers with a sense of security as well as strengthening them to master their daily lives. CONCLUSIONS: The nurses provided long distance support and care for the caregivers, by using computer-meditated communication. This communication was characterized by closeness as well as empathy. To strengthen the caregivers' competence and independence, the nurses were easy accessible and provided virtual supervision and support. This study increases the knowledge about online dialogues and relationship between nurses and caregivers. It contributes to knowledge about balancing in the relationship, as well as knowledge about bridging the gap between technologies and nursing care as potential conflicting dimensions. Maintenance of ethical principles are therefore critical to be aware of.

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Exploring the experience of the disclosure of a dementia diagnosis from a clinician, patient and carer perspective: a systematic review and Meta-ethnographic synthesis

Objectives: The objective of this review was to identify, appraise and synthesise qualitative research that explores the experience of the disclosure of a dementia diagnosis from the perspectives of clinicians, patients and carers. Method: A systematic search of four databases, grey literature and reference lists identified 13 studies, which met the required criteria to be included in the review. All were appraised using a quality appraisal tool. Data were extracted and synthesised using a meta-ethnographic approach. Results: Five key themes were developed from an interpretation of the results: the clinician's approach; how to tell people the diagnosis is dementia; the importance of the clinician offering hope; level of understanding; and who should attend the disclosure meeting. The process can be improved through a compassionate clinician offering hope, answers to patient and carer questions, and written and/or visual information to support understanding of the diagnosis. These features could be included in guidance to clinicians. There was a large amount of variance in the quality of the studies. Future qualitative research could focus on clinician compassion, giving hope, the management of dynamics within sessions, supporting information and follow-up sessions. Conclusion: Clinical practice can be informed by a body of literature but there is much work to be done to develop evidence-based detailed guidance for improving the dementia diagnosis experience for all parties, and supporting clinicians to manage inherent tensions in this process. Further research is required on this topic to addresses the shortcomings highlighted in this review.

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Evaluation of the quality of the communication and emotional support during the donation procedure: The use of the donor family questionnaire (DFQ)

Purpose A multi-centric study in Intensive Care units (ICU) and Emergency departments (ED) was designed to evaluate whether the provided communication and emotional support to the family in the context of organ donation met the international recommendations of the European Donor Hospital Education Program (EDHEP). Materials and methods Using a participatory approach and focus groups, a questionnaire was constructed: Donor Family questionnaire (DFQ). The questionnaire was distributed to 203 families. The data were analysed on item level. Results Sixty-four families participated, and 89% considered the communication as tactful. Only 24.1% had a separate conversation about passing and donation, which is the recommendation. 88.5% reported they could count on emotional support in the first phase on the ICU/ED. This dropped during the parting phase and the aftercare. The physician is perceived as the most active caregiver in the emotional support during the entire procedure. Conclusions The DFQ is a useful instrument to evaluate the donor procedure. The physician is important in the first phases of the donor procedure for the medical explanation. Other disciplines could be more involved in the following phases to assure enough emotional support, but this issue requires further exploration.

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A Systematic Review and Meta-Analysis of Dyadic Psychological Interventions for BPSD, Quality of Life and/or Caregiver Burden in Dementia or MCI

Objectives: This systematic review and meta-analysis assesses the effectiveness of psychological interventions that involve people with dementia or mild cognitive impairment (MCI) and their informal caregivers, and target improvements in the management of the behavioral and psychological symptoms of dementia (BPSD); quality of life; and/or burden reduction for people with either dementia or MCI and their informal caregivers. Methods: Studies were identified through database searches (Cochrane Library, CENTRAL, CINAHL, EMBASE, MEDLINE and PsychINFO) and clinical trials registers (ClinicalTrials.gov and ). Data were pooled for meta-analysis. Results: Database and reference list searches identified 1,878 references, of which fourteen studies were included. Positive effects were found on the anxiety symptoms of people with dementia on the RAID scale; on the quality of life of people with dementia on the self-rated QoL-AD scale; and on informal caregiver burden on the Zarit Burden Interview. Conclusions: Psychological interventions involving whole dyads have some promise for both people with dementia and informal caregivers, but are still far from uniformly effective across BPSD, quality of life, and caregiver burden. Further research directions are discussed.

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It is something special: How children and their parents experience a camp for young people who care for a parent with a severe physical illness

Recreational camps for children play an important role in coping with the illness of a family member. This paper aims to describe the experience of a young-carer summer camp in Austria from the perspective of the attending children who care for a parent with severe physical illness as well as their diagnosed and non-diagnosed parents who remained at home. Nineteen qualitative interviews with children and their parents were conducted and analyzed according to qualitative summarizing content analysis procedure. The findings show a familial decision-making process and the ambivalent expectations and feelings of the children prior to the camp. The camp itself is a place where children feel looked after and where they can enjoy adventure activities. It is also a place where they are among themselves and can make friends and talk about their feelings in a secure and private environment. During the camp, the remaining parents try to spend most of their time focusing on themselves and their partnership. The camp also gives the children a glimpse of another way of living with new freedoms that cannot be maintained when they come home. These findings indicate that camps can make an important contribution to addressing young carers’ needs but should also initiate a debate on more sustainable relief measures for children with care responsibilities. 

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Development and validation of a quality of relationship intervention for stroke survivor-family caregiver dyads

Background: The relationship between stroke survivors and family caregivers is critical for the well-being of both dyad members. Currently, there are few interventions targeted at dyads and focused on strengthening the relationship between survivors and family caregivers. Objectives: This study reports on the development of a customizable, strengths-based, relationship-focused intervention driven by the real-world experience and advice of stroke dyads. It also describes the "tips" that survivors and family caregivers offered for dealing with relationship challenges after stroke. Methods: Content of the intervention, including relationship tips, was derived from semi-structured interviews with N= 19 stroke dyads. A modified Delphi process with a national panel of 10 subject matter experts was used to evaluate and refine the content of the intervention and the associated screening tool. Results: Seventeen domains of relationship challenges and tips were identified. Consensus was reached among experts that the intervention content was relevant to the goal of helping survivors and family caregivers maintain a strong relationship after stroke; (2) clear from the perspective of stroke survivors and family caregivers who would be using it; (3) accurate with respect to the advice being offered, and; (4) useful for helping stroke survivors and family caregivers improve the quality of their relationship. Conclusions: This study extends the limited body of research about dyadic interventions after stroke. The next steps in this line of research include feasibility testing the intervention and evaluating its efficacy in a larger trial.

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Psychological interventions targeting partners of cancer patients: A systematic review

Purpose: Cancer patients' intimate partners often experience levels of psychological burden that are comparable to or even exceed that of the patients, making it imperative that they too be provided with appropriate psychological support. This review aimed to present the content and the effects of interventions delivered to caregiving partners of cancer patients on both partners and patients. Furthermore, we provide information about the acceptability of the interventions and study quality. Methods: An initial search in Web of Science, PsycINFO, and PubMed databases was conducted. We included RCTs as well as pre-post studies that focused on enhancing partners' wellbeing or diminishing partners' distress. To be included, interventions had to have been offered to partners either only or predominantly. We included studies published until December 2017. The methodological quality of the trials was assessed with the EPHPP assessment tool. Results: Nine studies met the inclusion criteria. Intervention topics included social support, short-term problem solving, the marital relationship quality, role expectations, emotional resilience, and coping strategies. Positive intervention effects were found with regard to social support, emotional distress, improved communication, posttraumatic growth, self-efficacy, and coping. Despite considerably low response rates, the interventions were generally well accepted. Most of the studies suffer limitations because of methodological flaws, the lack of randomization, and small sample sizes. Conclusion: Interventions delivered to partners of cancer patients may have positive effects on both partners and patients. We derive several implications for future research: Intervention programs should be tailored to the specific needs of caregiving partners with regard to the cancer trajectory and gender. Effort has to be made to increase sample sizes as well as to include particularly burdened individuals. Selected measurement instruments should be sensitive to specific intervention effects. Finally, information on both statistical as well as clinical relevance of research findings should be provided.

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Incorporating Community Partners, Family Caregiver Participants, an Interprofessional Researcher Team, and a Technology Company to Build and Evaluate an App

Family caregivers are the backbone of most health-care systems; intensively relied upon, yet their needs go mainly ignored. Technology has the potential to reach family caregivers and create accessible solutions to meet their complex needs. Creating a feasible, acceptable, and effective “app” requires the application of innovative qualitative methods. We combined methodologies including “agile methodology” that requires the continuous integration and involvement of the research team, caregiver participants, community partners, and a technology company, in our effort to develop the app. A “design thinking model” identified the first step to understand and empathize with caregivers while learning about the problem. We completed four focus groups with older adults to explore their needs and experiences. We discovered that caregivers have many roles and vary in their use of smartphone technology. They wanted reputable information, opportunities to stay close to their care receiver, and information on how to improve their abilities. We discovered unexpected themes and ideas to guide development of the app. Engaging the app developer and the community partner maintained the integrity of the agile methodology. We incorporated quantitative measures of depression and social support to provide evidence for the effectiveness of the app. The app has the potential to support family caregivers in real time and meet their needs in ways not yet readily available. Qualitative research can change the world. The need to listen, empathize, and understand the experience of the users of our research has never been greater.

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Interventions to support family caregivers of people living with dementia in high, middle and low-income countries in Asia: A scoping review

Introduction Despite increasing numbers of persons living with Alzheimer's disease and Alzheimer's-related dementias (AD/ADRD) in Asia, particularly in low-income countries (LIC) and middle-income countries (MIC), surprisingly little is known about the current state of the evidence for family caregiver interventions. The objectives of this scoping review were to: (1) describe the evidence for efficacy of family dementia-caregiver psychosocial interventions in Asian countries, (2) compare evidence across LIC, MIC, and high-income countries (HIC), and (3) characterise cultural adaptions to interventions developed outside Asia. Methods The inclusion criteria included: (1) conducted in Asia (2) included an intervention delivered to a family caregiver of a person living with AD/ADRD, (3) reported quantitative outcomes for the family caregiver and (4) published in a peer-reviewed journal with full text available in English. Results Thirty intervention trials were identified meeting inclusion criteria and all reported statistically significant (p<0.05) improvement in one or more caregiver outcomes. Interventions usually included multiple components. The most frequently reported outcomes (ie, by ≥20% of studies) were caregiver depression, burden, quality of life and self-efficacy. Overall, 26 (87%) of the studies were conducted in HIC in Asia, primarily in Hong Kong SAR-China and Taiwan, and only 4 (13%) in LIC and MIC in Asia. Seven studies (23%) used interventions developed in USA and several described cultural adaptations. Conclusion This scoping review found substantial evidence, particularly from high-income Asian countries, that a wide range of interventions improve AD/ADRD family caregiver outcomes. However, critical knowledge gaps exist, particularly for LIC and MIC in Asia, where the number of persons with dementia is numerically largest and projected to increase dramatically in coming decades. The field could also benefit from more detailed descriptions of the process and types of cultural adaptations to interventions. 

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The project ENABLE Cornerstone randomized pilot trial: Protocol for lay navigator-led early palliative care for African-American and rural advanced cancer family caregivers

Background: Patients newly-diagnosed with advanced cancer often rely on family caregivers to provide daily support to manage healthcare needs and maintain quality of life. Early telehealth palliative care has been shown to effectively provide an extra layer of support to family caregivers, however there has been little work with underserved populations, especially African-Americans and rural-dwellers. This is concerning given the lack of palliative care access for these underserved groups. Study design: Single-site, small-scale pilot randomized controlled trial (RCT) of Project ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone, a lay navigator-led, early palliative care coaching intervention for family caregivers of African-American and rural-dwelling patients with newly-diagnosed advanced cancer. Family caregivers are paired with a trained lay navigator overseen by specialist palliative care clinicians and receive a series of brief in-person and telehealth sessions focusing on stress management and coping, caregiving skills and organization, getting help, self-care, and preparing for the future/advance care planning. This pilot trial is assessing acceptability of the intervention, feasibility of recruitment and data collection procedures, and preliminary efficacy compared to usual care on caregiver and patient quality of life and mood over 24 weeks. Conclusion: Once acceptability and feasibility are determined and issues addressed, the ENABLE Cornerstone intervention for underserved family caregivers of persons with advanced cancer will be primed for a fully powered efficacy RCT. Given its use of lay navigators and telehealth delivery, the intervention is potentially highly scalable and capable of overcoming many of the geographic, human resource, and cultural obstacles to accessing early palliative care support.

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Development of a Caregivers' Support Platform (Connected Health Sustaining Home Stay in Dementia): Protocol for a Longitudinal Observational Mixed Methods Study

Background: Dementia disease is a chronic condition that leads a person with dementia (PwD) into a state of progressive deterioration and a greater dependence in performing their activities of daily living (ADL). It is believed nowadays that PwDs and their informal caregivers can have a better life when provided with the appropriate services and support. Connected Health (CH) is a new technology-enabled model of chronic care delivery where the stakeholders are connected through a health portal, ensuring continuity and efficient flow of information. CH has demonstrated promising results regarding supporting informal home care and Aging in Place, and it has been increasingly considered by researchers and health care providers as a method for dementia home care management. Objective: This study aims to describe the development and implementation protocol of a CH platform system to support informal caregivers of PwDs at home. Methods: This is a longitudinal observational mixed methods study where quantitative and qualitative data will be combined for determining the utility of the CH platform for dementia home care. Dyads, consisting of a PwD and their informal caregiver living in the community, will be divided into 2 groups: the intervention group, which will receive the CH technology package at home, and the usual care group, which will not have any CH technology at all. Dyads will be followed up for 12 months during which they will continue with their traditional care plan, but in addition, the intervention group will receive the CH package for their use at home during 6 months (months 3 to 9 of the yearly follow-up). Further comprehensive assessments related to the caregiver's and PwD's emotional and physical well-being will be performed at the initial assessment and at 3, 6, 9, and 12 months using international and standardized validated questionnaires and semistructured individual interviews. Results: This 3-year funded study (2016-2019) is currently in its implementation phase and is expected to finish by December 2019. We believe that CH can potentially change the PwD current care model, facilitating a proactive and preventive model, utilizing self-management-based strategies, and enhancing caregivers' involvement in the management of health care at home for PwDs. Conclusions: We foresee that our CH platform will provide knowledge and promote autonomy for the caregivers, which may empower them into greater control of the care for PwDs, and with it, improve the quality of life and well-being for the person they are caring for and for themselves through a physical and cognitive decline predictive model. We also believe that facilitating information sharing between all the PwDs' care stakeholders may enable a stronger relationship between them, facilitate a more coordinated care plan, and increase the feelings of empowerment in the informal caregivers.

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Effect of a Passive Intervention on Carers of Stroke Survivors During the Early Poststroke Period

BACKGROUND: Care partners of stroke survivors are often characterized by high burden levels and depression. Passive and active interventions have been proposed to help reduce burden and depression. The aim of this quality improvement report was to evaluate the effects of a single passive intervention on reported burden and depression in carers of stroke survivors. METHODS: A quality improvement report was conducted on carers who participated in a short passive intervention (n = 56) and a control group (n = 44). The Family Strain Questionnaire-Short Form (FSQ-SF) and the Beck Depression Inventory II were administered in both groups at patients' admission and before discharge, with the intervention taking place between the 2 data collection periods. RESULTS: No significant difference between groups was observed in FSQ-SF score and prevalence of depression at admission and in FSQ-SF at discharge. However, compared with admission, FSQ-SF at discharge was significantly reduced only in the intervention group (pre: 14, and interquartile range, 12-15; post: 9, and interquartile range, 9-13; P < .01). Moreover, a smaller proportion of carers classified as "depression" was found at discharge in the intervention group compared with controls (4% vs 28%, respectively; P < .01). CONCLUSION: Results encourage the development and use of short passive intervention to reduce burden and depression in care partners of stroke survivors.

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eHealth interventions to support caregivers of people with dementia may be proven effective, but are they implementation-ready?

Objectives: A variety of health services delivered via the Internet, or “eHealth interventions,” to support caregivers of people with dementia have shown evidence of effectiveness, but only a small number are put into practice. This study aimed to investigate whether, how and why their implementation took place. Methods: This qualitative study followed up on the 12 publications included in Boots et al.'s (2014) widely cited systematic review on eHealth interventions for informal caregivers of people with dementia, in order to explore further implementation into practice. Publicly available online information, implementation readiness (ImpRess checklist scores), and survey responses were assessed. Findings: Two interventions were freely available online, two were available in a trial context, and one was exclusively available to clinical staff previously involved in the research project. The remaining seven were unavailable. All scores on the ImpRess checklist were at 50% or lower of the total, indicating that the interventions were not ready to implement at the time of the Boots et al. (2014) review, though some interventions were scored as more implementation-ready in subsequent follow-up publications. Responses to the survey were received from six out of twelve authors. Key learnings from the survey included the importance of the involvement of stakeholders at all stages of the process, as well as the flexible adaptation and commercialization of the intervention. Conclusions: In general, low levels of implementation readiness were reported and often the information necessary to assess implementation readiness was unavailable. The only two freely available interventions had long-term funding from aging foundations. Authors pointed to the involvement of financial gatekeepers in the development process and the creation of a business model early on as important facilitators to implementation. Future research should focus on the factors enabling sustainable implementation.

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Compelling Results That a Problem-Solving Intervention Improves Hospice Family Caregiver Outcomes

This editorial comments on the article: Demiris, G., Oliver, D.P., Washington, K. and Pike, K. (2019), A Problem‐Solving Intervention for Hospice Family Caregivers: A Randomized Clinical Trial. J Am Geriatr Soc, 67: 1345-1352. doi:10.1111/jgs.15894

Hospice researchers Demiris, Parker Oliver, Washington, and Pike should be commended for their recent successful clinical trial evaluating the Problem‐Solving Intervention to Support Caregivers in End‐of‐Life Care Settings (PISCES) intervention, published in this issue of JAGS.8 The 4‐year study fills a substantial gap in the knowledge base by conducting a rigorous randomized trial within the challenging hospice care environment to demonstrate the efficacy of a brief, pragmatic problem‐solving intervention to support informal caregivers.

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Policy Brief on Ageing No. 22: The challenging roles of informal carers

The number of older people with care or support needs is on the rise across the UNECE region. While there are efforts to expand formal long-term care services to respond to this growing demand, informal care forms the backbone of long-term care (LTC) provision across the UNECE region. There is diversity in the way long-term care provision is organised and financed across the region as well as with regard to the status, recognition and support provided to informal carers. Although informal carers cover an estimated 70 to 95 per cent of all care needs,  they are often called the ‘invisible workforce’ in long-term care systems as they are rarely registered or counted and their status as informal care provider is often not formally recognized. The majority of informal care is provided by women.

By covering for the gaps in both short-term and long-term formal care provision, thus “co-producing” care services alongside professional service providers, informal carers help prevent or delay the need for institutionalization of people in need of care or support and are enabling them to remain living at home. 

It is challenging for informal carers to cover short-term care needs for a family member, neighbour or friend. It becomes even more demanding the longer this activity has to be performed, especially when informal carers might themselves be of advanced age and care recipients themselves. Policy measures are needed to address the growing need for care in a way that prevents strain on families and caregivers and protects their health and well-being. Public policies need to ensure that informal carers will not be forced to reduce or give up paid employment, face social exclusion and ultimately be caught in a poverty trap.

This policy brief focuses on informal carers who provide long-term informal care to older persons. It addresses the policy challenge to support informal carers in a multifaceted way, identifying key challenges faced by informal carers and policy strategies to address them. 

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Older adult caregivers of their spouses with acquired late-life disability: examining the effectiveness of an internet-based meditation program in mitigating stress and promoting wellbeing

This article reports a study examining the impact of an internet-based meditation program in mitigating stress and promoting wellbeing among older adult caregivers of their spouses with acquired late-life disability in Central Europe and South Asia compared to leisure. Posttest (T2) the meditation cohort exhibited lower caregiver burden and psychological distress, improved responses to care challenges, and greater wellbeing compared to the leisure group. South Asians, women, middle class, college educated, whose spouses had locomotor and sensory disabilities and lived as a couple alone, reported lesser caregiving burden, improved responses to care challenges, lesser distress and greater wellbeing at T2. Meditation lessons attended and self-practice mediated the relationship between demographic predictors and outcomes and self-practice had the largest positive impact. Meditation influenced certain aspects of caregiver wellbeing more such as self-care and certain specific aspects of wellbeing. Internet-based caregiver interventions are evidence as useful for social work with older caregivers.

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Narrative Recording as Relational Practice in Social Services: A Case Study from a Scottish Carer Support Organisation

Narrative recording in case records and individual plans within social services represents the means by which stories can be constructed with and about the people with whom services work, influencing relationship building and outcomes. Identities and decision-making are forged in records, shaping people’s lives. Yet, limited attention is paid to narrative recording in research and practice. Indeed, recording, which increasingly veers towards ‘box-ticking’, is viewed by practitioners as a bureaucratic burden, limiting time for the ‘real job’ of face-to-face work. Drawing on Ricoeur’s narrative hermeneutics in exploring qualitative data from a carer support organisation, we identify the potential contribution of narrative recording. Carers often seek support when their sense of identity and quality of life is diminished by their unpaid caring role. We explore practitioners’ views about the role of the narrative record in holding memories, feeding into recognition of capable agency, clarifying possibilities for action, restoration of identity and wellbeing. Applying a Ricoeurian lens demonstrates how attaining these benefits require recording practice which supports recognition through relational practice, in pursuit of better outcomes for carers. Carer benefits could be enhanced by carers holding a copy of and being able to reflect on and further contribute to their own plan.

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Extending a Knowledge-Based System with Learning Capacity

Informal caregivers often complain about missing knowledge. A knowledge-based personalized educational system is developed, which provides caregiving relatives with the information needed. Yet, evaluation against domain experts indicated, that parts of the knowledge-base are incorrect. To overcome these problems the system can be extended by a learning capacity and then be trained further utilizing feedback from real informal caregivers. To extend the existing system an artificial neural network was trained to represent a large part of the knowledge-based approach. This paper describes the found artificial neural network's structure and the training process. The found neural network structure is not deep but very wide. The training terminated after 374.700 epochs with a mean squared error of 7.731 ∗ 10-8 for the end validation set. The neural network represents the parts of the knowledge-based approach and can now be retrained with user feedback, which will be collected during a system test in April and May 2019.

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The Support, Health, Activities, Resources, and Education program for early stage dementia: Results from a randomized controlled trial

Purpose: A randomized controlled trial was conducted to test the effectiveness of the Support, Health, Activities, Resources, and Education Program. This six-session psycho-educational program provides dyadic counseling for individuals in the early stages of dementia and their family caregivers. The goal is to prevent common problems in care that emerge during the course of dementia by (1) actively engaging the person with dementia in developing a balanced plan of future care with his/her caregiver, (2) increasing use of available services, (3) enhancing dyadic relationship functioning, (4) improving well-being, and (5) evoking satisfaction with components of the intervention. Design and methods: Persons with early stage dementia (n = 128) and their caregivers (n = 128) were randomly assigned either to Support, Health, Activities, Resources, and Education Program or a control condition. Intervention efficacy was evaluated for completion of a care plan, use of services, dyadic relationship functioning, participant well-being, and program satisfaction. Results: Dyads in the treatment condition were able to construct a balanced care plan and increased their use of services. Dyadic functioning improved for one dimension (decreased emotional disruptions). Compared to the control condition, satisfaction with the intervention was higher for caregivers enrolled in Support, Health, Activities, Resources, and Education Program on four of five dimensions and one dimension for persons with dementia. Implications: Support, Health, Activities, Resources, and Education Program is a promising prevention approach that takes advantage of the early stage of dementia when both members of the dyad can participate fully in making decisions about later care. 

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Photojournalism-Based Intervention Reduces Caregiver Burden and Depression in Alzheimer’s Disease Family Caregivers

Purpose: Art interventions have demonstrated holistic benefits for persons living with dementia and their caregivers. In this article, we describe the results of a pilot photojournalism program for 10 unpaid caregivers of persons living with dementia, with respect to caregivers’ experience in the program and their psychological well-being. Design: Caregivers participated in four sessions led by a professional photojournalist who taught principles of photography. Between the sessions, caregivers took photographs that represented what caregiving meant to them using digital cameras provided in the program. During the sessions, instruction was interspersed with discussion of caregivers’ photographs. Method: Caregiver burden and depressive symptoms were measured pre- and postprogram. Qualitative exploration included sessions’ observations, viewing caregivers’ photographs, and recording caregivers’ accompanying comments. Findings: For participants with pre- and postprogram data, caregiver burden decreased significantly (p =.037). For caregivers with pre- and postprogram data, depressive symptoms decreased nonsignificantly (p =.066). Clinically meaningful reductions in caregiver burden and depressive symptoms were attained. Qualitative findings highlighted caregivers’ strong engagement with the project, the facilitator, and other participants, and reflection on multiple aspects of their experience. Conclusions: This intervention helped caregivers creatively communicate their experience and demonstrated efficacy in the improvement of caregivers’ psychological well-being. 

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Vietnamese American Dementia Caregivers' Perceptions and Experiences of a Culturally Tailored, Evidence-Based Program to Reduce Stress and Depression

Vietnamese American dementia caregivers are at increased risk for adverse mental health compared to the general U.S. population given their sociodemographic and immigration experiences, yet programs that address their needs are lacking. The current article describes Vietnamese American dementia caregivers' perceptions and experiences of a culturally tailored, evidence-based intervention to reduce stress and depression. A convenience sample of caregivers was recruited from the San Francisco Bay area and randomly assigned to intervention (“Our Family Journey”; OFJ) (n = 30) or control (written dementia caregiving information) (n = 30) groups. All intervention and 76.7% of control caregivers reported that the OFJ or educational materials, respectively, were very/somewhat helpful. Three or more skills were refined/learned by 96.7% of OFJ and 36.6% of control participants. Qualitative findings indicated that the intervention had positive effects on well-being and taught new caregiving skills. This first U.S. study to address the mental health needs of Vietnamese American dementia caregivers shows positive perceptions/experiences and demonstrates a model to address a significant need in the community. 

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Virtual Patient Interaction via Communicative Acts

In the context of assisting informal caregivers of Alzheimer Disease patients, this article presents the design and preliminary implementation of a serious game in which two agents a user-controlled caregiver and a virtual patient communicate via specifically-designed dialog acts, reflecting both pedagogically appropriate and inappropriate behaviors. 

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Multi-part quality evaluation of a customized mobile application for monitoring elderly patients with functional loss and helping caregivers

Background: The challenges faced by caregivers of the elderly with chronic diseases are always complex. In this context, mobile technologies have been used with promising results, but often have restricted functionality, or are either difficult to use or do not provide the necessary support to the caregiver - which leads to declining usage over time. Therefore, we developed the Mobile System for Elderly Monitoring, SMAI. The purpose of SMAI is to monitor patients with functional loss and to improve the support to caregivers' communication with the health team professionals, informing them the data related to the patients' daily lives, while providing the health team better tools. Method: SMAI is composed of mobile applications developed for the caregivers and health team, and a web portal that supports management activities. Caregivers use an Android application to send information and receive care advice and feedback from the health team. The system was constructed using a refinement stage approach. Each stage involved caregivers and the health team in prototype release-test-assessment-refinement cycles. SMAI was evaluated during 18 months. We studied which features were being used the most, and their use pattern throughout the week. We also studied the users' qualitative perceptions. Finally, the caregiver application was also evaluated for usability. Results: SMAI functionalities showed to be very useful or useful to caregivers and health professionals. The Focus Group interviews reveled that among caregivers the use of the application gave them the sensation of being connected to the health team. The usability evaluation identified that the interface design and associated tasks were easy to use and the System Usability Scale, SUS, presented very good results. Conclusions: In general, the use of SMAI represented a positive change for the family caregivers and for the NAI health team. The overall qualitative results indicate that the approach used to construct the system was appropriate to achieve the objectives. 

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Development of an eHealth information resource for family carers supporting a person receiving palliative care on the island of Ireland

Background: Many people receiving palliative care wish to die at home. Often, support from family or friends is key to ensuring that this wish is fulfilled. However, carers report feeling underprepared to undertake this role. This paper describes the process of developing a consensus and evidence based website to provide core information to help people support someone receiving palliative care on the island of Ireland. Methods: The project comprised three phases: (1) a review of systematic reviews facilitated the identification of core information needs; (2) content was developed in collaboration with a Virtual Reference Group (VRG) comprising patients, carers and professionals; and, (3) subject experts within the project team worked with a web developer to précis the agreed content and ensure it was in a format that was appropriate for a website. Members of the VRG were then invited to test and approve the website before it was made available to the general public. Results: Nineteen systematic reviews identified nine consensus areas of core information required by carers; a description of palliative care; prognosis and treatment of the condition; medication and pain management; personal care; specialist equipment; locally available support services; what to do in an emergency; nutrition; and, support for the carer. This information was shared with the VRG and used to develop website content. Conclusions: We engaged with service users and professionals to develop an evidence-based website addressing the agreed core information needs of non-professional carers who wish to provide palliative care to a friend or relative. 

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The impact of the absorbent products distribution system on family caregivers of older people with incontinence in Italy: Perception of the support received

Background: Urinary incontinence is a chronic, age-related disorder, likely to increase in the future due to global population ageing. In Italy, as in most countries, older people with incontinence are often cared for by family caregivers, whose burden might be worsened by the perception of receiving an inadequate support, due to the lack of customized services. The aim of this study was to evaluate the impact of the absorbent products distribution method on family caregivers' perception of the support received. Methods: The study compared the distribution of pads to homes and in pharmacy via a survey reaching 101 family caregivers of older people with incontinence living in two geographical areas of the Marche Region (Central Italy) with different distribution systems. The association between "Quality of perceived support" (the outcome variable) and two types of absorbent products delivery methods (i.e. pharmacy and home distribution) was analysed by means of a general linear model. Results: Findings show that family caregivers receiving pads at home (HODs) perceived a higher support than those gaining them at the pharmacy (PHADs) (respectively 68.1% vs 35%). The association between perceived support level and distribution system remained even after correction for confounding factors. 70.2% of PHADs reported "Poor well-being", versus only 53.7% of HODs. The latter are more satisfied with the type of products distribution and thus less inclined to experiment different systems for the supply of products for the urinary continence (e.g. by voucher). The results are virtually reversed among PHADs and the difference is statistically significant (p < 0.001). Conclusions: When family caregivers feel supported by a more customized service delivery system, their perception of the care-related burden is mitigated. Thus, it is important to consider the needs of both family caregivers and cared for older people, and not only of the latter for designing a more suitable distribution of absorbent products. The best solution could be leaving end-users the freedom to choose how they want to get products (e.g. voucher or personal budget). This requires a reorganization of the current pads delivery systems adopted by the Marche and by other Italian Regional Health Systems. 

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mHealth applications as an educational and supportive resource for family carers of people with dementia: An integrative review

Family carers encounter several challenges related to caring for people with dementia, and they need support in managing care recipients’ health needs. This study aims to identify, appraise and synthesise the existing evidence on the use of mHealth/smartphone applications as an educational and supportive resource for family carers of people with dementia. An integrative literature review approach was used. Seven databases were searched. The search generated 117 articles, with seven meeting the inclusion criteria. Three categories and their attendant sub-categories emerged from the literature. The categories are ‘carer support’, ‘evaluation strategies’ and ‘barriers and challenges’. mHealth applications appear to be a feasible intervention for family carers of people with dementia despite the limited available research and barriers for their development and implementation. Further research on mHealth applications with strong methodological rigour and more research on mHealth applications as an educational and supportive resource for carers of people with dementia are needed.

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Redesigning care for older people to preserve physical and mental capacity: WHO guidelines on community-level interventions in integrated care

Islene Araujo de Carvalho and coauthors discuss the WHO guidelines on integrated care for older people.

Summary points:

  • Numerous underlying physiological changes occur with increasing age, and for older people, the risks of developing chronic diseases and care dependency increase.
  • Health systems are often better designed to respond to episodic health needs than to the more complex and chronic health needs that tend to arise with increasing age, and reprioritization is required to meet the needs of ageing populations.
  • Significant losses in capacity and care dependency in later life can be delayed or avoided if health interventions are introduced earlier in the process of functional decline.
  • We discuss the recommendations of the WHO Integrated Care for Older People (ICOPE) Guidelines, which provide evidence-based recommendations for managing declines in intrinsic capacity, developed with the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology.
  • Implementation of evidence-based interventions requires community-based assessment of an individual’s needs, development and implementation of a care plan, provision of monitoring and referrals as needed, and supporting caregivers.
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iSupport: a WHO global online intervention for informal caregivers of people with dementia

The development of iSupport was funded by a grant from the Alzheimer Association US, the Ministry of Health, Welfare and Sport in the Netherlands, and Alzheimer Disease International. The authors alone are responsible for the views expressed in this letter and they do not necessarily represent the views, decisions or policies of the institutions with which they are affiliated. The iSupport development team included E. Albanese, N. Batsch, U. Baruah, K. Edwards, K. Egan, D. Gallagher‐Thompson, M. Guerra, J. Holroyd‐Leduc, T. Kwok, K. Mehta, M. Prins, S. Loganathan, I. Rosier, P. Shivakumar, I. van Asch, M. Varghese, H. Wang, B. Willemse, M. Wortmann and L. Xiao. The WHO Secretariat included A. Brunier, K. Carswell, T. Dua, A.M. Pot, D. Rekve, K. Seeher, M. van Ommeren, S. Saxena and D. Zandi.

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Randomized controlled trial of a facilitated online positive emotion regulation intervention for dementia caregivers

Objective: To test the effects of Life Enhancing Activities for Family Caregivers (LEAF), a 6-week positive emotion regulation intervention, on outcomes of positive emotion, depression, anxiety, and physical health as measured by the Patient-Reported Outcomes Measurement Information System® (PROMIS®). Method: A randomized controlled trial (N 170) comparing LEAF (N 86) to an emotion reporting/waitlist condition (N 84) in dementia caregivers. LEAF was individually delivered online by trained facilitators. Participants in the control condition completed daily online emotion reports and then crossed over into the intervention condition after 6 weeks. The study was registered with Clinicaltrials. gov (NCT01825681) and funded by R01NR014435. Results: Analyses of difference in change from baseline to 6 weeks demonstrated significantly greater decreases in PROMIS® depression (d <.25; p.02) and Quality of Life in Neurological Disorders (NeuroQOL) anxiety (d <.33; p-.01), as well as improvements in PROMIS® physical health (d.24; p.02) in the intervention condition compared to the emotion reporting/waitlist control. The intervention also showed greater improvements in positive emotion (d.58; p-.01) and positive aspects of caregiving (d.36; p-.01). Increases in positive emotion significantly mediated the effect of LEAF on depression over time. Conclusions: This randomized controlled trial of the online-facilitated positive emotion regulation intervention in dementia caregivers demonstrated small to medium effect sizes on caregiver well-being and shows promise for remotely delivered programs to improve psychological well-being in caregivers of people with dementia and other chronic illnesses. 

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An evaluation of the suitability, readability, quality, and usefulness of online resources for family caregivers of patients with cancer

Objective: Evaluate the suitability, readability, quality, and usefulness of publicly available online resources for cancer caregivers. Methods: Resources identified through a Google search and environmental scan were evaluated using the Suitability Assessment of Materials (SAM), an online readability text analysis tool, the DISCERN (quality), and caregivers' unmet needs checklist (usefulness). Descriptive analyses and cluster analysis to identify the group of resources with the highest SAM and DISCERN scores were performed. Results: 55 resources were evaluated. The suitability of 48/55 (87%) resources were categorized as adequate (SAM scores 40–69), with no resources ranking in the superior category (SAM scores > 70%). The readability of 51/55 (93%) resources exceeded 9th grade reading level. The mean quality score as a percentage was 49% (SD 11.5). On average resources addressed 9.9/33 unmet needs (SD = 5.8). A high-quality cluster was identified and included 15 (27%) websites. Conclusion: Online resources for cancer caregivers are not optimal in terms of their suitability, readability, quality, and usefulness. The highest ranked resources include, Cancer Council Australia's booklet, Caring for Someone with Cancer, and the American Cancer Society's webpages, Caregivers and Families. Practice implications: Study findings will allow healthcare professionals to better address cancer caregivers’ needs by recommending the most optimal resources. 

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Online information and support for carers of people with young-onset dementia: A multi-site randomised controlled pilot study

OBJECTIVES: The European RHAPSODY project sought to develop and test an online information and support programme for caregivers of individuals diagnosed with young onset dementia. The objectives were to assess user acceptability and satisfaction with the programme and to test outcome measures for a larger effectiveness study. DESIGN: A pilot randomised controlled trial in England, France, and Germany was conducted with 61 caregivers for adults with young onset Alzheimer's disease or frontotemporal degeneration. Evaluations at baseline, week 6, and week 12 assessed user acceptability and satisfaction. Use of the programme was measured from online back-end data. Qualitative feedback on user experiences was collected via semi-structured interviews. Measures of caregiver well-being (self-efficacy, stress, burden, frequency of patient symptoms, and caregiver reactions) were explored for use in a subsequent trial. RESULTS: Participants logged in online on average once a week over a 6-week period, consulting approximately 31% of programme content. Seventy percent of participants described the programme as useful and easy to use. Eighty-five percent expressed intent to use the resource in the future. Reductions in reported levels of stress and caregivers' negative reactions to memory symptoms were observed following use of the programme. CONCLUSIONS: Results indicated that the RHAPSODY programme was acceptable and useful to caregivers. The programme may be complementary to existing services in responding to the specific needs of families affected by young onset dementia. Distribution of the programme is underway in England, France, Germany, and Portugal.

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Moving through predeath grief: Psychological support for family caregivers of people with dementia

When caring for a family member with dementia, continuous losses and predeath grief can adversely affect the caregivers’ physical and mental health. Interventions for caregivers should therefore also aim at coping with loss and managing predeath grief. It was the objective of the present study to describe sources of grief caregivers report during therapy and to investigate how therapists can support caregivers. Two caregivers who participated in a randomized controlled trial were selected for this case study. Both caregivers received an intervention based on the principles of cognitive-behavioral therapy with grief-focused content that consisted of 12 sessions within six months. Three therapy sessions per participant were transcribed, coded, and analyzed using qualitative content analysis. Results illustrate that both caregivers experienced a loss of companionship with their respective care recipient and ambiguous loss that resulted in intense grief that they found difficult to manage. Therapists responded by supporting the caregivers to acknowledge their losses and identify individual ways to cope with and accept loss and grief. Both caregivers reported higher well-being and an increased ability to manage their grief-related emotions after the therapy ended. The identified intervention strategies fit well into a theoretical framework for grief interventions for dementia caregivers, i.e. the dementia grief model.

 
 
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The effectiveness of a life story program on stress reduction among Chinese American family caregivers of older adults

The study aims to examine the effectiveness of a life story program on reducing Chinese American family caregivers’ stress due to the burden of caregiving. This study conducted a quasi-experimental pre-posttest research design. A simple one-way ANOVA was performed to test the significance of the intervention on caregivers’ burden. The life story was not found to be directly statistically significant on reducing burden. However, through the life story intervention, it was discovered that among Chinese American family caregivers their perceived lower dependency of the care receiver, fewer needs of the care receiver and unknown time frame of continuation of care were statistically significant on the burden scale. The life story intervention improved family caregivers’ insight and judgment on the effect that care receivers’ needs and demands had on their continuation of caregiving. 

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A Pilot Randomized Controlled Trial of a Mindfulness-Based Intervention for Caregivers of Veterans

Objectives: Informal caregivers of veterans are providing care for a population whose specialized care needs require increased investments on the part of caregivers and for longer durations. Empirical evidence shows negative mental health effects on these caregivers at rates that outpace those seen in caregivers in the general population. With a growing need and limited resources, effective interventions are needed to improve mental health outcomes in this special population of caregivers. Methods: This pilot, randomized control trial tested the effectiveness of a mindfulness-based intervention at improving perceived stress, depressive symptoms, anxiety, and worry compared to waitlist controls in a sample of 23 caregivers of veterans. Results: The Mann-Whitney U tests used to determine whether groups differed in change scores (post minus pre) indicated that there were significant differences between the mindfulness and waitlist control group in perceived stress (U = 21.5, p =.006, r = .57), anxiety (U = 24.0, p =.009, r = .54), and worry (U = 29.5, p =.024, r = .47). Results from the Wilcoxon signed-rank tests indicated that caregivers in the mindfulness group reported a significant reduction in perceived stress (Z = − 2.50, p =.013, r =.75) and anxiety (Z = − 2.81, p =.005, r =.85), whereas the waitlist control group reported higher mean symptoms at the end of the intervention period. Conclusions: Given these promising results, policymakers, health practitioners, and veteran-related programs should increase efforts to provide caregivers of veterans with mindfulness-based interventions to improve mental health outcomes. 

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Effects on stress reduction of a modified mindfulness-based cognitive therapy for family caregivers of those with dementia: Study protocol for a randomized controlled trial

Background: Caring for people with dementia (PWD) is stressful and poses many life challenges for the family caregivers. Interventions targeting the stress and psychological well-being of the caregivers have been proposed but the sustainable effects and efficacies of these interventions vary considerably. Mindfulness-based cognitive therapy (MBCT) has been shown to be effective at reducing stress in several populations. However, limited research on the effects of MBCT in family caregivers of PWD has been conducted. This study protocol aims to examine the effects on stress reduction of a modified MBCT for family caregivers of PWD. Methods: A prospective, single-blind, parallel-group, randomized controlled trial will be adopted. A convenience sample of 100 community-dwelling family caregivers of PWD will be randomized to either the modified MBCT or the control groups. The modified MBCT group will receive a 10-week, seven-session, group-based modified MBCT whereas the control group will receive a social interaction and routine education (SIRE) on dementia care program at a frequency and timing similar to those in the intervention group. The primary outcomes (stress) and secondary outcomes (depression, anxiety, burden, health-related quality of life, and the behavioral and psychological symptoms of the care recipient) will be measured immediately post-intervention (T1) and at 6-month follow-up (T2), which will be compared with the baseline (T0). Discussion: Reducing the stress of caregiving can promote the well-being of the family caregivers and maintain their sustainability in providing daily care for their family members with dementia. MBCT is found to be effective for stress reduction in other populations, and the results of this study are able to provide us with evidence for using MBCT as a standard supportive intervention for the family caregivers of PWD. Trial registration: ClinicalTrials.gov, NCT03354819. Registered on 28 November 2017. 

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Effects of a modified mindfulness-based cognitive therapy for family caregivers of people with dementia: A pilot randomized controlled trial

Background: Caregivers of people with dementia experience high stress levels. Mindfulness-based cognitive therapy has been found to be effective in reducing stress and improving the psychological well-being of several populations. Objective: To explore the feasibility and preliminary effects of a modified mindfulness-based cognitive therapy for family caregivers of people with dementia. Methods: In a single-blinded, parallel-group, randomized controlled trial, 36 caregivers of people with dementia were randomized to either the intervention group, receiving the 7-session modified mindfulness-based cognitive therapy in 10 weeks; or the control group, receiving the usual family care and brief education on dementia care. The brief education sessions were similar in frequency and duration to the intervention group. Various psychological outcomes of caregivers were assessed and compared at baseline, immediately post-intervention, and at the 3-month follow-up. A focus group with eight participants from the intervention group was conducted to identify the strengths, limitations, and difficulties of the intervention. Results: Intervention feasibility was established with a high completion rate of 83% (completing ≥5 out of the 7 sessions) and a low attrition rate of 11.1%. The duration of the average weekly home-based mindfulness practice of the caregivers was 180 minutes (S.D. = 283.8). The intervention group experienced a statistically significant decrease in stress levels (Z = -1.98, p = 0.05, Cohen's d = 0.7) and depressive symptoms (Z = -2.25, p = 0.02, Cohen's d = 0.8) at the post-test; and a decrease in stress (Z = -2.58, p = 0.01, Cohen's d = 0.9), depressive symptoms (Z = -2.20, p = 0.03, Cohen's d = 0.7), and burden (Z = - 2.74, p = 0.006, Cohen's d = 1.0), and improved quality of life (physical) (Z = -1.68, p = 0.09, Cohen's d = 0.6) at the 3-month follow-up compared to the controls. A focus group conducted immediately after the intervention revealed three major themes: Impacts on the family caregivers, Impacts on the people with dementia, and Difficulty in practicing mindfulness. Conclusion: The findings support the feasibility and preliminary effects of the modified mindfulness-based cognitive therapy on reducing the stress of caregivers and improving their psychological well-being. Some potential effects on people with dementia (e.g., improvements in behavioral problems) were reported by the caregivers. A future study with a larger and more diverse sample is proposed to evaluate the longer-term effects and generalizability of the modified mindfulness-based cognitive therapy and the impacts on people with dementia. 

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Opting Out of a Time-of-Death Visit: Insights From Home Hospice Family Members

Hospice patients die in various settings, including at home with family caregivers. Hospice offers a time-of-death visit to provide support and confirm death, a requirement in some states but not all. Few studies have been conducted among home hospice families exploring their experiences without a time-of-death visit. To better understand the family's experience regarding the time of death of their loved one, we conducted an exploratory study using a hermeneutic phenomenological approach. Home hospice families who had experienced a death within the last 6 to 13 months and had not received a time-of-death visit were recruited. Seven interviews were conducted, and data were analyzed using an emergent thematic approach. Major themes included caregiver's previous experience with death, caregiver support, final hours, and reasons for not selecting a time-of-death visit. Results showed families did well without a time-of-death visit when strong social support was present and conveyed the importance of allowing personal choice. Further research is needed to identify families in need of time-of-death visits and targeted support needs and to inform practice and policy guidelines. 

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A meta-analysis of low-intensity cognitive behavioral therapy-based interventions for dementia caregivers

Objectives: This study aimed to review the effectiveness of low-intensity cognitive behavioral therapy (CBT)-based interventions for informal dementia caregivers when compared to non-active control conditions. Design: Literature searches were conducted in databases of published (PsycINFO, MEDLINE, CINAHL, Scopus) and unpublished (Open Grey, ISRCTN registry, ClinicalTrials.gov, ProQuest) literature. Individual meta-analyses were conducted for each outcome variable. Pooled intervention effect estimates were calculated as Hedge's g using a random-effects model.Included studies: Studies examining the effect of low-intensity CBT-based interventions for informal caregivers for people with any progressive dementia were included. Randomized controlled trials and controlled clinical trials were included. Measurements: Outcomes included the psychological variables of anxiety, depression, burden, and distress (defined as stress or strain). Results: A total of five studies reported anxiety outcomes, 12 reported on depression, three reported on burden, and six reported distress outcomes. Results demonstrated a significant effect of low-intensity CBT-based interventions in reducing all examined psychological difficulties. Small effect sizes were found for anxiety (g = 0.35), depression (g = 0.27), and distress (g = 0.33). A medium effect was found for burden (g = 0.53). Conclusions: The results provide initial support for low-intensity CBT-based interventions for dementia caregivers. Clinical implications and research recommendations are explored. Strengths and limitations of the study are discussed. 

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DESKK Study - Development and testing of a dementia-specific respite care concept with a mobility and counselling programme: Study protocol

Introduction: Specific mobility programmes can delay functional decline in people with dementia (PwD). Family caregivers (FCs) can be relieved from care-related burden by counselling services. Respite care is a short-term inpatient care service (1-8 weeks of stay). Respite care centres (RCCs) can function as support structures for dementia care arrangements through caring-based mobility training of PwD and counselling sessions for their FCs. However, no systematic mobility or counselling programmes exist in this setting in Germany or the rest of the world. The aim of the development and testing of a dementia-specific respite care concept (DESKK) study is the development and testing of an evidence-based mobility and counselling programme for PwD and their FCs that is suitable for the respite care setting. Methods and analysis: A pilot-based, quasi-experimental evaluation study will be conducted in a specialised RCC for PwD. To evaluate the acceptance and usability of the development and testing of a DESKK concept, qualitative data will be collected from the RCC staff and FCs via semistandardised interviews. Quantitative data will be collected using instruments to assess effect tendencies of the concept related to mobility (PwD) and burden (FCs). Furthermore, a mixed-methods triangulation approach will be conducted. Ethics and dissemination: The protocol, informed consent and accompanying material given to patients were submitted by the investigator to the Ethical Review Committee of the German Society of Nursing Science. The project was examined and finally approved on 31 January 2017 (Number: 16-27). Prior to obtaining written consent for study participation, information must be given to all of the study participants in verbal and written form. The results of the study will be presented at national and international conferences and published in peer-reviewed journals. After the concept is finalised, a practice-friendly manual will be developed in which implementation components are described for other RCCs. 

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An Italian pilot study of a psycho-social intervention to support family caregivers' engagement in taking care of patients with complex care needs: The Engage-in-Caring project

Background: The raising of disability and chronic illness burden among European population is calling for a new paradigm of care, focused on primary health care interventions. Engage-In-Caring is a novel multicomponent intervention clearly dedicated to improve family caregiver engagement in the care of patients with complex care needs, by supporting them to develop a stronger consciousness of their role, needs and skills. Method: Engage-In-Caring intervention's efficacy and feasibility have been evaluated through a single arm pre-post observational pilot study settled in Rome. A qualitative phase, consisting of literature analysis of caregivers' unmet needs and a final revision from an experts' group, led to the structuration of the intervention, following the Caregiver Health Engagement Model (CHE-Model). Afterwards, a quantitative phase allowed understanding the feasibility of the intervention through Kruskal-Wallis test on a sample of 47 caregivers. Results: Results showed a reduction of the physical burden (Chi Squared = 6,483; p =.01) perceived by the caregivers and increase of the health literacy (Chi Squared = 3,560; p =.059) after the intervention. Conclusions: Feasibility tests on caregivers of patients with complex care needs are promising: this pilot study suggests a first effectiveness evidence, particularly concerning aspects related to burden perception and improvements in health literacy. Randomised controlled trials on larger samples are needed.

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Carers at breaking point: Making the case for carers' breaks in England

This report shows the that majority of unpaid carers are unable to take sufficient breaks and also highlights an unfair and unequal provision of carers’ breaks services across England. The report is based on the results of a survey of over 1,000 carers in the UK and a freedom of information request to local authorities and clinical commissioning groups across England. Only 8 per cent of carers responding to the survey felt they had been able to take sufficient breaks. Almost half of respondents said they had not been able to take breaks even if they would have liked to, with 38 per cent f those not being able to afford replacement care. Carers who hadn’t taken a break from caring within the last year were also more likely to report that their mental or physical health had suffered as a result of caring. The Freedom of Information request also found wide variation in the amount of money local authorities and clinical commissioning groups are spending on carers’ breaks through the dedicated Better Care Fund. The report makes recommendations to improve access to breaks for carers, including increased funding for carers’ breaks through the Better Care Fund and for local authorities to make breaks a key part of their preventative work. 

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An exploration of the experience of using calendar reminders for people with dementia and family carers

People with dementia and family carers often use calendars to support time orientation to maintain routine. However, little is known about the use of calendars as a compensatory strategy. This study examines the experience and practicalities of using calendar reminders from the perspective of people with dementia and family carers. Six dyads were recruited and interviewed at home. Interpretative Phenomenological Analysis was used to develop a narrative interpreted from an occupational therapy perspective. The themes were reflected on during two subsequent focus groups. Findings suggested that calendars are used either intensively as external memory records or more casually and randomly for reassurance. The familiarity and location of the calendar and its utility to the person with dementia and carer, all contribute to its efficacy. For carers the experience of supporting calendar reminders encompasses practical, cognitive and emotional effort. There was little awareness amongst participants of electronic assistive technology. 

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Can brief telephone interventions reduce caregiver burden and depression in caregivers of people with cognitive impairment? - Long-term results of the German day-care study (RCT)

Background: Day-care and telephone counseling have been discussed as effective support measures for caregivers of people with cognitive impairment. Methods: In a two-arm cluster-randomized trial involving multicomponent therapy for cognitively impaired persons in day-care centers and telephone counseling for their caregivers versus treatment as usual (TAU), we investigated long-term effects on caregivers' burden and depressiveness. Person-caregiver dyads involving home-dwelling persons with MCI, mild dementia, or moderate dementia were eligible. Day-care centers were randomized into an intervention group (IG) or a control group (CG). Outcome assessors were blinded. Out of 359 caregivers who had completed a 6-month intervention phase (nIG = 205, nCG = 154), a total of 304 of them were available at the 12-month follow-up (nIG = 173, nCG = 131). Instruments for assessing were the Burden Scale for Family Caregivers - short version (BSFC-s) (caregiver burden) and the Well-Being Index Score (WHO-5) (depressiveness). Mixed ANOVAs were used for the main analyses; descriptive statistics and subgroup analyses were additionally performed; secondary analyses involved multiple linear regressions for the main outcomes that were significant in the unadjusted main analysis. Results: At follow-up, crude mean differences showed a nonsignificant advantage for the IG in caregiver burden [IG: -.20 (SD = 5.39) vs. CG:.76 (SD = 5.49), p =.126, d =.177] and depressiveness (reverse scored) [IG: -.05 (SD = 5.17) vs. CG: -.98 (SD = 5.65), p =.136, d =.173]. For caregiver burden, a mixed ANOVA resulted in significant main effects of group (F (1, 302) = 4.40; p =.037) and time (F (1.88, 568.96) = 3.56; p =.032) but not a significant interaction. The largest effects were found for the "mild dementia" subgroup (d =.443 for caregiver burden and d =.520 for depressiveness). Discussion: Positive long-term effects of a combined intervention involving telephone counseling for caregivers and multicomponent activation for patients were observed especially for mild dementia. However, the treatment effects washed out after the intervention ended. Trial registration: ISRCTN16412551 (date: 30 July 2014, retrospectively). 

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Designing and developing a co-produced theoretical and evidence-based online support for family caregivers of people with dementia at the end of life

Background: Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life. Methods: Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: Three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: A research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: An outline of the prototype was developed based on stage 1 and 2; and Stage4-User testing: Interviews with caregivers testing the prototype website. Results: Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication. Conclusions: This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia. 

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Long-Term Outcomes of the Benefit-Finding Group Intervention for Alzheimer Family Caregivers: A Cluster-Randomized Double-Blind Controlled Trial

Objectives: To examine the effects of the group benefit-finding therapeutic intervention (BFT) for Alzheimer family caregivers up to 10-month follow-up. Methods: This was a cluster-randomized double-blind controlled trial in social centers and clinics. Participants included 129 caregivers. Inclusion criteria were 1) primary caregiver aged 18 years and older and without cognitive impairment, 2) providing 14 or more care hours per week to a relative with mild-to-moderate Alzheimer disease, and 3) scoring 3 or more on the Hamilton Depression Rating Scale. Exclusion criterion was care-recipient having parkinsonism or other forms of dementia. BFT (using cognitive reappraisal to find positive meanings) was evaluated against two forms of psychoeducation as controls—standard and simplified (lectures only) psychoeducation. All interventions had eight weekly sessions of 2 hours each. Primary outcome was depressive symptoms, whereas secondary outcomes were global burden, role overload, and psychological well-being. Measures were collected at baseline, postintervention, and 4- and 10-month follow-up. Results: Mixed-effects regression showed that BFT's effect on depressive symptoms conformed to a curvilinear pattern, in which the strong initial effect leveled out after postintervention and was maintained up to 10-month follow-up; this was true when compared against either control group. The effect on global burden was less impressive but moderate effect sizes were found at the two follow-ups. For psychological well-being, there was an increase in the BFT group at 4-month follow-up and a return to baseline afterward. No effect on role overload was found. Conclusion: Benefit-finding reduces depressive symptoms as well as global burden in the long-term and increases psychological well-being in the medium-term.

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Predictors of Symptoms Remission Among Family Caregivers of Individuals With Dementia Receiving REACH VA

Resources for Enhancing All Caregivers Health (REACH VA) is a behavioral intervention for caregivers of individuals with dementia disseminated in the VA. Although shown to improve caregiver and care recipient outcomes, some caregivers continue to experience depression or caregiver burden following the intervention. Factors that predict symptom remission following REACH VA are unknown. The present study investigated attachment, social support, and psychopathology as predictors of symptom remission for family caregivers who completed REACH VA. Caregivers who do not remit perceive lower levels of social support from loved ones, endorse poorer attachment quality, and have more personality disorder characteristics, particularly affective instability. These factors that impair caregivers’ abilities to be effectively attuned to the needs of their care recipients and to reap benefits from a brief and focused behavioral intervention such as REACH VA. Interventions that target caregiver interpersonal functioning and emotion regulation skills may be helpful to those who do not respond to REACH VA. 

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The Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act

The Recognize, Assist, Include Support and Engage (RAISE) Family Caregivers Act was signed into law on January 23, 2018. The bill is Public Law 115-119 (U.S. Congress) had bipartisan sponsorship by Maine Senator Susan Collins (R) who chairs the Senate Committee on Aging and Wisconsin Senator Tammy Baldwin (D) along with Mississippi Congressman Harper Gregg (R) and Florida Congresswoman Kathy Caster (D) on the House side (Eisenberg, 2018). This law directed the Secretary of the Department of Health and Human Services (HHS) to develop and maintain a United States strategy to recognize and support the over 40 million family caregivers. The RAISE Act aims to help relatives and partners who provide medical household and financial assistance to loved ones (Eisenberg, 2018).

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“They take a lot of pressure off us”: Volunteers reducing staff and family care burden and contributing to quality of care for older patients with cognitive impairment in rural hospitals

Objectives: 1Explore the ability of trained volunteers to provide person-centred care focusing on nutrition/hydration support, hearing/visual aids and activities in rural hospitals for older patients with dementia and/or delirium. 2Explore the impacts and challenges of volunteer care for family carers and hospital staff. Methods: Staff were surveyed about their confidence, stress and satisfaction at 6 months post-implementation. Focus groups with staff and interviews with families explored program successes, challenges and enabling factors. Results: Volunteers integrated themselves into the care team, providing person-centred care, increased safety and quality of care for patients and a reduced burden for staff and families. Key enablers were clear processes for screening, training and supporting volunteers. Key challenges included initial role delineation, staff/volunteer trust and sustainability. Conclusion: The program is reported by families and staff as being effective in addressing the main barriers to providing person-centred care for older adults with cognitive impairment in rural acute hospitals. 

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Closer: A videoconference intervention for distance caregivers of cancer patients

Distance caregivers (DCGs) represent a growing demographic. The emotional burden of caregiving for a family member with cancer is amplified by the logistical challenges of providing support from afar. DCGs feel higher levels of distress, anxiety, and depression compared with local caregivers. Videoconference technology may alleviate both the emotional and practical burdens faced by DCGs. This is an ongoing randomized controlled trial in 32 outpatient ambulatory clinics at a large, urban, comprehensive cancer center. To date, 332 patient‐DCG dyads have been enrolled. DCGs must have internet access and have been identified by the patient as a source of support. The intervention period is 4 months. DCGs are randomized to one of three arms: DCGs in Arm 1 receive four coaching sessions with an advanced practice nurse or social worker and four videoconference appointments during the oncologist‐patient office visit. DCGs in Arm 2 participate in four videoconference appointments with the oncologist and patient, and Arm 3 is the control group, which receives access to information through a website. Primary outcome variables are DCG distress, anxiety, depression, burden, self‐efficacy, and emotional support. These data are collected electronically at baseline, 4 months, and 6 months. Patient distress, anxiety, and depression are also assessed at these same intervals using brief in‐person interviews. The change in each of the DCG outcomes over time will be examined by a repeated measures analysis of covariance.

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Nursing interventions to support family caregivers in end-of-life care at home: A systematic narrative review

Background: Family caregivers are crucial in end-of-life care. However, family caregiving may involve a significant burden with various negative health consequences. Although nurses are in a unique position to support family caregivers at home, little is known about which nursing interventions are effective in this context. Therefore, this study aims to provide insight into nursing interventions currently available to support family caregivers in end-of-life care at home and to describe their effects. Methods: A systematic search was conducted in Embase, Medline Ovid, Web of Science, Cochrane Central, CINAHL and Google Scholar. This review included quantitative studies published from January 2003 until December 2018 reporting on nursing interventions to support adult family caregivers in end-of-life care at home. Data were extracted on intervention modalities, intervention components, and family caregivers’ outcomes. Methodological quality of the studies was assessed with the Cochrane Risk of Bias Tool. Results: Out of 1531 titles, nine publications were included that reported on eight studies/eight interventions. Of the eight studies, three were randomised controlled trials, one a pilot randomised trial, one a non-randomised trial, and three were single-group prospective studies. Four intervention components were identified: psychoeducation, needs assessment, practical support with caregiving, and peer support. Psychoeducation was the most commonly occurring component. Nursing interventions had a positive effect on the preparedness, competence, rewards, and burden of family caregivers. Multicomponent interventions were the most effective with, potentially, the components ‘needs assessment’ and ‘psychoeducation’ being the most effective. Conclusions: Although only eight studies are available on nursing interventions to support family caregivers in end-of-life care at home, they show that interventions can have a positive effect on family caregivers’ outcomes. Multicomponent interventions proved to be the most successful, implying that nurses should combine different components when supporting family caregivers. 

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Dementia-friendly community indicators from the perspectives of people living with dementia and dementia-family caregivers

Aims: To identify dementia-friendly communities' indicators and their current conditions in Taiwan from the perspectives of people with dementia and dementia-family caregivers.; Design: This qualitative study explored the opinions and experiences of people with dementia and dementia-family caregivers regarding dementia-friendly communities.; Methods: Participants (16 people with dementia and 20 family caregivers) were recruited from neurological clinics, day care centers for people with dementia and support groups for family caregivers in the Taipei community from July - October, 2016. Data were collected in face-to-face interviews, which were tape recorded and transcribed verbatim. Transcripts were analyzed by Miles and Huberman's (1994) guidelines.; Results: Similar indicators for dementia-friendly communities were identified in Taiwan as in other countries, including dementia-friendly care services, dementia-friendly hospitals, dementia-friendly community environment, dementia-friendly transportation, dementia-friendly stores and shops, dementia friendly people, integrated dementia-related information and community contribution- and -involvement opportunities for people with dementia. However, Taiwanese people with dementia and family caregivers described no emphasis on the potential of people with dementia to contribute to developing dementia-friendly communities and more top-down expectations for the government's role.; Conclusion: These indicators can be a guide for developing and evaluating dementia-friendly communities in Taiwan. Differences between Taiwan and Western developed countries in indicators for dementia-friendly communities can be further explored. Community nursing assessment, interventions and evaluation based on these dementia-friendly communities indicators can be further developed.; Impact: This study developed indicators for dementia-friendly communities in an Asian country. These indicators can be used as a guide for developing and evaluating dementia-friendly communities.

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Caregivers for the elderly in Thailand: development and evaluation of an online support system

Informal caregivers are playing a major role in helping elderly people with their activities in daily life. The purpose of this work is to develop an Online Support System for Elderly Care (OSSEC) to provide services for informal caregivers in Thailand. The system has six modules which are: patient and caregiver profile manager, elderly care recommender applying case-based reasoning, daily care plan manager, elderly care activity notifier, elderly care information resource locator and caregivers’ social interaction platform. We have established the utility of OSSEC in enhancing the knowledge and ability of informal caregivers and in reducing their stress. In particular, we measured quantitatively the usefulness of OSSEC and evaluated user satisfaction as well.

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Psychosocial interventions for informal caregivers of people living with cancer

Background Increasingly, people who are not health professionals provide care for a partner, family member or friend affected by cancer, which can have negative effects on their health and well‐being. Psychosocial interventions that comprise psychological or social support and involve direct interaction between a healthcare professional and caregivers (or caregiver‐patient pairs) may help to address the negative health effects for caregivers. Review question What is the effectiveness of psychosocial interventions compared to usual care for informal caregivers of people living with cancer on a range of outcomes related to health and well‐being?  Results We found19 trials that compared psychosocial interventions with usual care, in studies that included almost four thousand participants. Studies included caregivers of people affected by different cancers across all stages of the disease. There were differences in intervention make‐up. Intervention examples include providing information and/or teaching caregivers (or caregiver‐patient pairs) coping, communication or problem‐solving skills to manage symptoms or improve relationships. Interventions were delivered by nurses, psychologists or other professionals on an outpatient basis or at home via telephone. There may be a minimal benefit for caregiver quality‐of‐life immediately after the intervention, but this may not last. Psychosocial interventions may have little to no effect on quality of life for patients six to 12 months post‐intervention, but we are uncertain whether or not interventions improve quality of life for patients immediately post‐intervention. Psychosocial interventions may have little to no effect on caregiver depression, anxiety, distress and physical health and patient anxiety and distress at any time after the intervention, or on patient depression immediately and patient physical health six to 12 months post‐intervention. Psychosocial interventions probably have little to no effect on patient physical health immediately post‐intervention or patient depression three to six months post‐intervention. Three studies reported adverse effects including increased distress and sexual function‐related distress and lower relationship satisfaction levels for carers, increased distress levels for patients, and intervention content that was seen as inappropriate for some participants. No studies looked at cost‐effectiveness or intervention satisfaction for caregivers or patients. Because the quality of evidence was low generally, findings must be treated with caution. Conclusion Psychosocial interventions do not impact to a clinically meaningful degree outcomes for caregivers irrespective of patient cancer stage or type. Perhaps, other outcomes (e.g. relationship quality) or other psychosocial interventions (e.g. meditation) may be more helpful for caregivers. Interventions should be subjected to better conducted trials. Intervention development should involve caregivers and pay particular attention to individual personal needs.

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Intracranial Tumors: A nurse-led intervention for educating and supporting patients and their caregivers

BACKGROUND: Behavioral symptoms among postoperative patients with intracranial tumors and distress among caregivers are common. OBJECTIVES: This article aimed to assess the effectiveness of a brief nurse-led intervention on behavioral symptoms of postoperative patients with intracranial tumors and distress of their caregivers. METHODS: A randomized controlled trial was conducted on 80 patients with intracranial tumors and their family caregivers in a tertiary care institute in India. A brief nurse-led intervention was provided in the form of individual counseling, and a pamphlet was given to patients and caregivers in the experimental group at the time of discharge. Behavioral symptoms of patients and distress of caregivers were assessed. FINDINGS: Patients in the experimental group had significantly fewer behavioral symptoms and less severity of behavioral symptoms as compared to the control group. Caregivers in the experimental group had significantly less severity of distress as compared to the control group. 

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Caregiver Care

Eighty percent of adults requiring long-term care currently live at home in the community, and unpaid family caregivers provide 90% of their care. Family caregivers serve as a critical extension of the U.S. health care system, and the demand for family caregivers is expected to increase during the next few decades. Caring for loved ones is associated with several benefits, including personal fulfillment; however, caregiving is also associated with physical, psychological, and financial burdens. Family physicians can aid in the identification, support, and treatment of caregivers by offering caregiver assessments-interviews directed at identifying high levels of burden-as soon as caregivers are identified. Repeat assessments may be considered when there is a change in the status of the caregiver or the care recipient. Caregivers should be directed to appropriate resources for support, including national caregiving organizations, local elder care agencies, websites, and respite care. Psychoeducation, skills training, and therapeutic counseling interventions for caregivers have shown small to moderate success by decreasing caregiver burden and increasing caregiver quality of life. Additional research is needed to further identify strategies to offset caregiver stress, depression, and poor health outcomes. Support and anticipatory guidance for the caregiver is especially helpful during care transitions and at the care recipient's end of life.

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Improving family caregiver and patient outcomes in lung cancer surgery: Study protocol for a randomized trial of the multimedia self-management (MSM) intervention

Objective: To describe the study protocol of the Multimedia Self-Management (MSM) intervention to prepare patients and family caregivers (FCGs) for lung cancer surgery.; Design: The study is a five-year, single site, randomized controlled trial of 160 lung cancer surgery FCG and patient dyads (320 total participants), comparing intervention and attention control arms.; Setting: One National Cancer-Institute (NCI) designated comprehensive cancer center in Southern California.; Participants: Patients who are scheduled to undergo lung cancer surgery and their FCGs are enrolled as dyads only.; Intervention: Based on the Chronic Care Self-Management Model (CCM), the intervention is a nurse-led, caregiver-based, multimedia care program for lung cancer surgery. Its primary focus is to help FCGs develop self-management skills related to their caregiving role through goal setting, proactive planning, building problem-solving skills, and accessing family support services. The intervention also supports dyads to prepare for surgery and post-operative recovery at home. It includes videos, print, web-based, and post-discharge telephone support.; Main Outcome Measures: FCG and patient psychological distress and QOL; FCG burden and preparedness for caregiving; FCG and patient healthcare resource use (in-home nursing care, urgent care/ER visits, readmissions).; Analysis: Repeated measures ANCOVA statistical design will be used, removing variances prior to examining mean squares for the group by occasion interactions, and co-varying the baseline scores. In addition, structured equation modeling (SEM) will assess whether mediating and moderating factors are associated with outcomes. ClinicalTrials.gov Identifier: NCT03686007.

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Enhancing & Mobilizing the POtential for Wellness & Emotional Resilience (EMPOWER) among Surrogate Decision-Makers of ICU Patients: study protocol for a randomized controlled trial

Background: Critical illness increases the risk for poor mental health outcomes among both patients and their informal caregivers, especially their surrogate decision-makers. Surrogates who must make life-and-death medical decisions on behalf of incapacitated patients may experience additional distress. EMPOWER (Enhancing & Mobilizing the POtential for Wellness & Emotional Resilience) is a novel cognitive-behavioral, acceptance-based intervention delivered in the intensive care unit (ICU) setting to surrogate decision-makers designed to improve both patients' quality of life and death and dying as well as surrogates' mental health. Methods: Clinician stakeholder and surrogate participant feedback (n = 15), as well as results from an open trial (n = 10), will be used to refine the intervention, which will then be evaluated through a multisite randomized controlled trial (RCT) (n = 60) to examine clinical superiority to usual care. Feasibility, tolerability, and acceptability of the intervention will be evaluated through self-report assessments. Hierarchical linear modeling will be used to adjust for clustering within interventionists to determine the effect of EMPOWER on surrogate differences in the primary outcome, peritraumatic stress. Secondary outcomes will include symptoms of post-traumatic stress disorder, prolonged grief disorder, and experiential avoidance. Exploratory outcomes will include symptoms of anxiety, depression, and decision regret, all measured at 1 and 3 months from post-intervention assessment. Linear regression models will examine the effects of assignment to EMPOWER versus the enhanced usual care group on patient quality of life or quality of death and intensity of care the patient received during the indexed ICU stay assessed at the time of the post-intervention assessment. Participant exit interviews will be conducted at the 3-month assessment time point and will be analyzed using qualitative thematic data analysis methods. Discussion: The EMPOWER study is unique in its application of evidence-based psychotherapy targeting peritraumatic stress to improve patient and caregiver outcomes in the setting of critical illness. The experimental intervention will be strengthened through the input of a variety of ICU stakeholders, including behavioral health clinicians, physicians, bereaved informal caregivers, and open trial participants. Results of the RCT will be submitted for publication in a peer-reviewed journal and serve as preliminary data for a larger, multisite RCT grant application. Trial registration: ClinicalTrials.gov, NCT03276559. Retrospectively registered on 8 September 2017.

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The effectivness of a strengths-oriented therapeutic conversation intervention on perceived support, well-being and burden among family caregivers in palliative home-care

Aims: To evaluate the effectiveness of a two-session multicomponent family strengths- oriented therapeutic conversation intervention among family caregivers of an individual with advanced/final stage cancer during ongoing palliative home-care.; Background: Family caregivers of patients in the advanced/final phases of cancer, experience multifaceted psychological distress and morbidity. Psychosocial interventions improve the well-being of family members who are caring for their close relative.; Design: A pre-experimental design with a one-group pre-test/posttests measurements.; Methods: Forty-eight family caregivers were assigned to receive two 60-90 min sessions of the intervention. The primary outcome was perceived emotional and cognitive support and psychological well-being, measured at baseline (T1). Then the participants were offered the first session of the intervention. About one week later, the second session was administered. The participants answered the same questionnaires again (T2) and then 2-4 weeks later (T3). The guideline; Criteria for Reporting Development and Evaluation of Complex Interventions 2, guided the reporting of the study.; Results: Family caregivers reported significantly higher emotional and cognitive support post-intervention (T2) and (T3). They also reported significantly reduced stress symptoms at (T3) and reduced caregiver burden post-intervention (T2) and at (T3).; Conclusion: The provision of the intervention contributed to extending knowledge about the usefulness of family conversations in the context of advanced/final stage cancer care.; Impact: There is a lack of knowledge regarding the benefit of therapeutic conversations interventions for family caregivers. The therapeutic conversation intervention offered, resulted in perceived support, decreased stress and decreased caregiving demands among caregivers in palliative home-care. 

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The Carers' Alert Thermometer (CAT): supporting family carers of people living with motor neurone disease

Background: Burden and distress among family carers of people living with motor neurone disease (MND) are reported widely. Evidence-based screening tools to help identify these carers' needs and plan appropriate support are urgently needed. Aim: To pilot the Carers' Alert Thermometer (CAT), a triage tool developed to identify carers' needs, with family carers of people living with MND to determine its usefulness in identifying their need for support. Methods: Training workshops with MND Association visitors (AVs) and staff in southwest and northwest England, followed by implementation of the CAT. A self-completed online survey and semi-structured telephone interview evaluated use of the CAT. Findings: Sixteen participants completed the online survey with 11 volunteering to be interviewed. The CAT has potential to map change over time, help to focus on carers' needs and improve communication with carers. Conclusion: The CAT provides a structure enabling AVs to engage in a meaningful process with family carers to identify and discuss their needs.

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Acceptance and Commitment Therapy for Symptom Interference in Advanced Lung Cancer and Caregiver Distress: A Pilot Randomized Trial

Context: Advanced lung cancer patients typically have a poor prognosis and many symptoms that interfere with functioning, contributing to high rates of emotional distress in both patients and family caregivers. There remains a need for evidence-based interventions to improve functional outcomes and distress in this population.; Objectives: This pilot trial examined the feasibility and preliminary efficacy of telephone-based Acceptance and Commitment Therapy (ACT) for symptomatic, advanced lung cancer patients and their distressed family caregivers. Primary outcomes were patient symptom interference with functioning and patient and caregiver distress.; Methods: Symptomatic, advanced lung cancer patients and distressed caregivers (n=50 dyads) were randomly assigned to six sessions of ACT or an education/support condition. Patients completed measures of symptom interference and measures assessing the severity of fatigue, pain, sleep disturbance, and breathlessness. Patients and caregivers completed measures of distress and illness acceptance and struggle.; Results: The eligibility screening rate (51%) and retention rate (76% at 6 weeks post-intervention) demonstrated feasibility. No group differences were found with respect to patient and caregiver outcomes. Both groups showed a small, significant decrease in struggle with the illness over the study period, but did not show meaningful change in other outcomes.; Conclusion: Findings suggest that telephone-based ACT is feasible for many advanced lung cancer patients and caregivers, but may not substantially reduce symptom interference and distress. Low baseline levels of certain symptoms may have contributed to null findings. Next steps include applying ACT to specific, clinically meaningful symptom interference and varying intervention dose and modality.

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Pilot Study of a Transitional Intervention for Family Caregivers of Older Adults

Objective : To conduct a formative evaluation of a transitional intervention for family caregivers, with assessment of feasibility, acceptability, appropriateness, and potential benefits. Methods : The intervention aimed to provide emotional support, information on community resources, and information and support for development of coping skills for the caregivers of patients aged 65 and older who were to be discharged home from an acute medical hospital admission. We used a one-group, pre- and three-month post-test study design. Results: Ninety-one patient-caregiver dyads were recruited. Of these, 63 caregivers (69%) received all five planned intervention sessions, while 60 (66%) completed the post-test. There were significant reductions in caregiver anxiety and depression following the intervention, and high rates of satisfaction. Discussion: This transitional intervention should be further evaluated, preferably with a control group, either as a stand-alone intervention or as one component of a comprehensive transitional intervention for older patients and their caregivers.

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Improving information to caregivers of cancer patients: the Herlev Hospital Empowerment of Relatives through More and Earlier information Supply (HERMES) randomized controlled trial

Purpose: The newly developed "Herlev Hospital Empowerment of Relatives through More and Earlier information Supply" (HERMES) intervention systematically identifies cancer caregivers' unmet needs for information from health care professionals (HCPs) and offers them the information they lack. The aim of this study was to investigate the effect of the HERMES intervention on caregivers' perception of information, communication, attention and help from HCPs, fulfillment of care needs, and anxiety and depression.; Methods: A randomized intervention study with immediate intervention in the intervention group and delayed intervention (after follow-up) in the control group among caregivers of cancer patients starting chemotherapy.; Results: Totally 199 caregivers were included (intervention group, n = 101; control group, n = 98). No intervention effect was found on overall satisfaction with information from HCPs (p = 0.1687) measured by a single item from the Cancer Caregiving Tasks, Consequences and Needs Questionnaire (CaTCoN) and chosen as primary outcome. However, positive effects were found on the CaTCoN subscales "Problems with the quality of information from and communication with HCPs" (p = 0.0279), "Lack of information from HCPs (HERMES)" (p = 0.0039), and "Lack of attention on the caregivers' wellbeing from HCPs" (p < 0.0001). No effect was found on the CaTCoN subscale "Need for help from HCPs", the Family Inventory of Needs subscale regarding fulfillment of care needs, or the Hospital Anxiety and Depression scale.; Conclusions: Although no effect was found on overall satisfaction with information, the HERMES intervention had positive effects on the caregivers' experiences of the amount of information and attention given to them and the quality of information and communication.; Trial Registration: ClinicalTrials.gov (Identifier: NCT02380469).

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Investigating the economic case of a service to support carers of people with dementia: A cross-sectional survey-based feasibility study in England

Carers contribute essential support to enable people with dementia to continue living within the community. Admiral Nurses provide specialist dementia support for carers of people with dementia, including offering expert emotional support and guidance, and work to join up different parts of the health and social care system to address needs in a co-ordinated way. The cost-effectiveness of this service is not clear. We undertook a feasibility study to explore related outcomes and costs for these carers. A cross-sectional, clustered survey was undertaken in England in 2017, in areas with and without Admiral Nursing (AN). The survey questionnaire included questions on the characteristics of the carers and the person with dementia, outcomes (care-related quality of life [CRQoL], self-efficacy and subjective well-being), use of health and social care services, out-of-pocket costs and time spent on informal care. We used different econometric techniques to compare the outcomes and the costs of the carers with and without AN services: linear regression, propensity score matching and instrumental variables analysis. These techniques allowed us to control for differences in observed and unobserved characteristics between the two groups of carers which determined outcomes and costs. We concluded that AN services might have a positive effect on carers' CRQoL, self-efficacy and subjective well-being. Furthermore, we found little difference in costs between carers using AN and those using usual care, or in the costs of the people with dementia they care for. Our findings provided an initial indication as to whether AN services could be good value for money. The key limitation of the study was the difficulty in controlling for unobserved characteristics because of the cross-sectional nature of our observational data. To diminish this limitation, our survey could be used in future studies following carers with and without AN services over time.

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The Effect of Group Counseling Based on Quality of Life Therapy on Stress and Life Satisfaction in Family Caregivers of Individuals with Substance Use Problem: A Randomized Controlled Trial

Family caregivers of people with substance abuse are exposed to psychological problems that diminish their life quality and satisfaction. The purpose of this study was to diagnose the efficacy of quality-of-life intervention on stress and life satisfaction of family caregivers of individuals with substance use problem. This is a randomized controlled trial conducted on 80 family caregivers of individuals with substance use problem in the process of withdrawal who were referred to a psychiatric center in southeastern Iran (2018). The intervention group received seven sessions of quality-of-life group counseling every other day based on predetermined content. Twelve weeks post-intervention, data were collected from the control and intervention groups using the Depression Anxiety and Stress Scales (DASS-21) and the Satisfaction with Life Scale (SWLS). The results were analyzed through statistical tests. After group counseling based on quality of life, the mean stress score in the family caregivers of the intervention group (11.50 ± 4.36) was significantly lower than in those of the control group (14.67 ± 4.93) (p = 0.003). Also, in the posttest, the mean score of life satisfaction in the intervention group (24.75 ± 4.28) was significantly higher than that of the control group (19.57 ± 7.33) (p = 0.001). Group counseling based on quality of life exerted a significantly positive impact on reducing the severity of stress and improving life satisfaction among family caregivers of individuals with substance use problem. Therefore, it is highly recommended that healthcare service providers incorporate this counseling approach in substance use withdrawal programs so as to increase the well-being and mental health of family caregivers.

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Pilot Test of a Computer-Based System to Help Family Caregivers of Dementia Patients

Background: Family members absorb much of the care of dementia patients. The burden of care substantially impacts caregivers' health, further straining our healthcare system. By 2050, the incidence of Alzheimer's disease will more than double, increasing the numbers of family caregivers proportionally. Interventions that reduce their burden are needed to preserve their health as well as the viability of the healthcare system.; Objective: This paper reports on the development and feasibility testing of a computer-based system intended to improve the lives of caregivers. D-CHESS (Dementia-Comprehensive Health Enhancement Support System) allows users to obtain information, communicate with other caregivers, get help with care decisions, and share information with experts.; Method: Thirty-one caregivers were randomly assigned to an intervention group receiving D-CHESS for 6 months or to a control group receiving a caregiving book. Surveys at 0, 2, 4, and 6 months evaluated caregiver burden, family conflict, satisfaction with decisions, social support, loneliness, anxiety, depression, and coping competence.; Results: Survey findings suggest D-CHESS participants may perform better on measures of social support, anxiety, loneliness, and coping competence; the groups were equivalent on caregiver burden, decision satisfaction, and depression, and the control group reported less family conflict than the intervention. D-CHESS use data suggested enhancements to system design and content to increase awareness and use of various features.; Conclusion: This study suggests that D-CHESS has potential to positively impact family caregivers and that the system merits further development and investigation with a full-scale clinical trial.

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Factors influencing the adoption of Smart Health technologies for people with dementia and their informal caregivers: Scoping review and design framework

Background: Smart Health technologies (s-Health technologies) are being developed to support people with dementia (PwD) and their informal caregivers at home, to improve care and reduce the levels of burden and stress they experience. However, although s-Health technologies have the potential to facilitate this, the factors influencing a successful implementation in this population are still unknown. Objective: The aim of this study was to review existing literature to explore the factors influencing PwD and their informal caregivers’ adoption of s-Health technologies for home care. Methods: Following the Arksey and O’Malley methodology, this study is a scoping review providing a narrative description of the scientific literature on factors influencing s-Health technology adoption for PwD and their informal caregivers. A search was conducted using PubMed, the Cochrane library, the IEEE library, and Scopus. Publications screening was conducted by 2 researchers based on inclusion criteria, and full-text analysis was then conducted by 1 researcher. The included articles were thematically analyzed by 2 researchers to gain an insight into factors influencing adoption that PwD and their informal caregivers have to encounter when using s-Health technologies. Relevant information was identified and coded. Codes were later discussed between the researchers for developing and modifying them and for achieving a consensus, and the researchers organized the codes into broader themes. Results: Emerging themes were built in a way that said something specific and meaningful about the research question, creating a list of factors influencing the adoption of s-Health technologies for PwD and their informal caregivers, including attitudinal aspects, ethical issues, technology-related challenges, condition-related challenges, and identified gaps. A design framework was created as a guide for future research and innovation in the area of s-Health technologies for PwD and their informal caregivers: DemDesCon for s-Health Technologies. DemDesCon for s-Health Technologies addresses 4 domains to consider for the design and development of s-Health technologies for this population: cognitive decline domain, physical decline domain, social domain, and development domain. Conclusions: Although s-Health technologies have been used in health care scenarios, more work is needed for them to fully achieve their potential for use in dementia care. Researchers, businesses, and public governments need to collaborate to design and implement effective technology solutions for PwD and their informal caregivers, but the lack of clear design guidelines seems to be slowing the process. We believe that the DemDesCon framework will provide them with the guidance and assistance needed for creating meaningful devices for PwD home care and informal caregivers, filling a much-needed space in the present knowledge gap.

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A realist evaluation of a regional Dementia Health Literacy Project

Background: A Dementia Health Literacy Project was undertaken in the north coast region of NSW, Australia, after it was identified as having a high prevalence of dementia. A Dementia Support Kit was produced with service user engagement to provide useful information to people with dementia and their families. Objective: To evaluate the Dementia Health Literacy Project using a realist evaluation framework. Setting and participants: The setting was the region of the north coast of New South Wales. Eight people diagnosed with dementia and their carers, 13 members of social groups of older people in the local area, and 22 local GPs and other health‐care and service providers participated in this study. Results: Two context‐mechanism‐outcome configurations were identified: (a) co‐design workshops where the stakeholders' opinions were equally valued (context) led service users to feel listened to and prompted them to provide feedback (mechanism) to develop a practical resource that they would use (outcome); and (b) use of health professionals to distribute the resources (context) that they consider useful and valuable (mechanism) resulted in the target audience receiving the resources (outcome). Discussion and conclusions: The Dementia Health Literacy Project produced a Dementia Support Kit that is likely to provide locally relevant and useful information for people with dementia and their carers. The results highlight the value of the co‐design approach in producing and disseminating dementia health literacy resources. Further evaluation is required to confirm the impact of the Kit over time on service users' behaviour and consequently on their health outcomes.

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Providing Support for Caregiver Communication Burden: Assessing the Plain Language Planner Resource As a Nursing Intervention

Objective: To elicit informal caregiver feedback about an mHealth resource and it's potential as a nurse-delivered intervention for caregiver communication support.; Data Sources: Four focus groups with current oncology caregivers that involved caregiver use of the resource and response to a video demonstrating the resource as a nursing intervention. A brief assessment of the resource was collected for triangulation of data.; Conclusion: Caregivers rated the resource as overwhelmingly positive and reported that use of the resource gave an increased sense of preparedness. Caregivers shared ideas for future expansion of the resource, highlighted the need for user-responsive design, and described the need for a caregiver-centered tool.; Implications For Nursing Practice: Communicating complex terminology relating to treatment, side effects, and symptoms requires resources to meet health literacy needs. A nursing protocol for using the resource is provided based on feedback collected from caregivers.

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Embedding caregiver support in community-based services for older adults: A multi-site randomized trial to test the Adult Day Service Plus Program (ADS Plus)

There are over five million people in the United States living with dementia. Most live at home and are cared for by family. These family caregivers often assume care responsibilities without education about the disease, skills training, or support, and in turn become at risk for depression, burden, and adverse health outcomes when compared to non-dementia caregivers. Despite over 200 caregiver interventions with proven benefits, many caregivers lack access to these programs. One approach to enhance access is to embed evidence-based caregiver support programs in existing community-based services for people with dementia such as adult day services (ADS). Here we describe the protocol for an embedded pragmatic trial designed to augment standard ADS known as ADS Plus. ADS Plus provides family caregivers with support via education, referrals, and problem solving techniques over 12 months, and is delivered on-site by existing ADS staff. Embedding a program in ADS requires an understanding of outcomes and implementation processes in that specific context. Thus, we deploy a hybrid design involving a cluster randomized two-group trial to evaluate treatment effects on caregiver wellbeing, ADS utilization, as well as nursing home placement. We describe implementation practices in 30 geographically and racially/ethnically diverse participating sites. Clinical trial registration #: NCT02927821.

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Dementia Patients' Transition to Residential Aged Care: Carers' and Social Workers' Experiences

Many people with dementia eventually require residential aged care, frequently preceded by a hospital admission. Family carers often find the process challenging and disempowering, as they are expected to move their family member to residential aged care quickly. This article reports on findings from a small Australian qualitative study focusing on the provision of information, support and resources, and discusses the findings in relation to person-centred care and critical social work. Social workers completed an online survey and participated in focus groups, and carers were interviewed. The research found that carers valued the information, support, and resources provided by social workers and other hospital staff. They needed time to adjust to the dementia diagnosis and wanted a supportive person to talk to about the written information. The social workers wanted an improved approach to the preparation and communication of information, and a more consistent approach to family meetings. There is a need to further develop and articulate the role of hospital social workers in supporting the transition to residential aged care for people with dementia and their family carers. What is valued by family carers is personal support; a team approach from the hospital; up-to-date, concise information; and guidance from a caseworker. Early diagnosis of dementia, more information about the progression of dementia, and advanced care planning would be of assistance.

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Innovative Tools to Support Family Caregivers of Persons with Cancer: The Role of Information Technology

Objectives: To describe the current evidence of studies examining the use of information technology for family caregivers of persons with cancer. We highlight emerging technologies and trends and discuss ethical and practical implications.; Data Sources: Review scientific studies and systematic reviews of technology use to support caregivers of persons with cancer.; Conclusion: The evidence base is growing; however, more studies are needed to test the effectiveness of technology.; Implications For Nursing Practice: Several tools have potential to provide support to family caregivers but the selection of such tools needs to address access, privacy, interoperability, and usability considerations.

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Process evaluation of a social support platform ‘Inlife’ for caregivers of people with dementia

Introduction Informal caregivers of persons with dementia have an increased risk of facing social isolation. Online social media interventions might offer a new opportunity to increase access to social support. An online social support platform, ‘Inlife’, was developed and launched in the Netherlands to enhance social support, positive interactions and information sharing in informal support networks. Objective A process evaluation was performed to evaluate the internal and external validity of the Inlife intervention. Methods Implementation, sampling and intervention quality were evaluated by both qualitative and quantitative methods. Analyses were performed using descriptive statistics and inductive content analysis. Analyses were conducted following participants' completion of the intervention after 16 weeks. Results The overall participation rate in the study was 27% (96/351). The Inlife intervention was generally well-received by the primary caregivers. Inlife facilitated empowerment, openness, involvement, and efficient care organization. Still, adherence was not optimal for all Inlife users. Determinants for Inlife use were identified on the level of the Inlife innovation, the users, and the socio-political context. Conclusions Inlife was evaluated as a useful instrument for efficient central care coordination and mutual involvement. This study emphasizes that the personal attitudes of the Inlife users to seek and provide support warrant attention, next to the characteristics of the actual Inlife innovation for optimal intervention uptake. Online and offline support might be integrated to raise awareness of caregiver social support needs and attitudes and provide insight into caregivers' available social capital. Trial registration Dutch trial register NTR6131, Registered on 20 October 2016.

  • Users found that Inlife increased empowerment, openness, involvement, and efficient care organization.
  • Lower adherence rates may have affected internal and external validity.
  • Determinants for Inlife use were found at the level of the innovation, the users, and the socio-political context.
  • Implementation strategies should focus on attitudes and barriers of Inlife’s users, as well as Inlife’s characteristics.
  • Offline guidance might be integrated to raise awareness of caregivers’ social capital, their support needs and barriers.
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Addressing personal barriers to advance care planning: Qualitative investigation of a mindfulness-based intervention for adults with cancer and their family caregivers

Objective: Advance care planning (ACP) increases quality of life and satisfaction with care for those with cancer and their families, yet these important conversations often do not occur. Barriers include patients' and families' emotional responses to cancer, such as anxiety and sadness, which can lead to avoidance of discussing illness-related topics such as ACP. Interventions that address psychological barriers to ACP are needed. The purpose of this study was to explore the effects of a mindfulness intervention designed to cultivate patient and caregiver emotional and relational capacity to respond to the challenges of cancer with greater ease, potentially decreasing psychological barriers to ACP and enhancing ACP engagement. Method: The Mindfully Optimizing Delivery of End-of-Life (MODEL) Care intervention provided 12 hours of experiential training to two cohorts of six to seven adults with advanced-stage cancer and their family caregivers (n = 13 dyads). Training included mindfulness practices, mindful communication skills development, and information about ACP. Patient and caregiver experiences of the MODEL Care program were assessed using semistructured interviews administered immediately postintervention and open-ended survey questions delivered immediately and at 4 weeks postintervention. Responses were analyzed using qualitative methods.Result Four salient themes were identified. Patients and caregivers reported the intervention (1) enhanced adaptive coping practices, (2) lowered emotional reactivity, (3) strengthened relationships, and (4) improved communication, including communication about their disease. Significance of resultsThe MODEL Care intervention enhanced patient and caregiver capacity to respond to the emotional challenges that often accompany advanced cancer and decreased patient and caregiver psychological barriers to ACP.

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Mindfulness-based practices with family carers of adults with learning disability and behaviour that challenges in the UK: Participatory health research

Background: Family carers of adults with learning disability and behaviours that challenge lead complex and stressful lives. Their caring role can leave them isolated and unsupported. In the UK, effective services designed to build resilience for people in long-term caring roles are lacking. There are none (to our knowledge) designed using a participatory health research (PHR) approach with family carers and professionals.; Objective: With positive behaviour support (PBS) and mindfulness and acceptance and commitment therapy (ACT) as key elements, a PHR approach was used to understand the basis for a successful course that supported the capabilities and resilience of family members in long-term caring roles.; Design: The research was guided by the principles of PHR with participation as the defining principle throughout. Central to the research were reflexive conversations (communicative spaces) where diverse knowledges were shared and critiqued.; Findings: Mindfulness/ACT can change long-standing response behaviours and build personal resilience and improve mental health. Elements enabling positive change included a facilitation approach for collaborative reflexivity and the complementary, interactive approach to collaborative enquiry for learning and decision making afforded by PHR.; Discussion: The use of PHR accessed knowledges that would have been lost to more traditional, professional-expert driven processes and facilitated change in constructs for action for both professionals and family carers. Findings challenge service providers to consider how experiential knowledge has agency in professional practice and service design. Reflection on the PHR process across the FaBPos project led to a re-consideration of quality issues in relation to PHR and participation.

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Interventions to help support caregivers of people with a brain or spinal cord tumour

Background: The diagnosis and treatment of a brain or spinal cord tumour can have a huge impact on the lives of patients and their families with family caregiving often resulting in considerable burden and distress. Meeting the support needs of family caregivers is critical to maintain their emotional and physical health. Although support for caregivers is becoming more widely available, large-scale implementation is hindered by a lack of high-quality evidence for its effectiveness in the neuro-oncology caregiver population.; Objectives: To assess the effectiveness of supportive interventions at improving the well-being of caregivers of people with a brain or spinal cord tumour. To assess the effects of supportive interventions for caregivers in improving the physical and emotional well-being of people with a brain or spinal cord tumour and to evaluate the health economic benefits of supportive interventions for caregivers.; Search Methods: We searched the Cochrane Central Register of Controlled Trials (CENTRAL; 2018, Issue 7), MEDLINE via Ovid, and Embase via Ovid. We also handsearched relevant published conference abstracts (previous five years), publications in the two main journals in the field (previous year), searched for ongoing trials via ClinicalTrials.gov, and contacted research groups in the field. The initial search was in March 2017 with an update in August 2018 (handsearches completed in January 2019).; Selection Criteria: We included all randomised controlled trials (RCTs) where caregivers of neuro-oncology patients constituted more than 20% of the sample and which evaluated changes in caregiver well-being following any supportive intervention.; Data Collection and Analysis: Two review authors independently selected studies and carried out risk of bias assessments. We aimed to extract data on the outcomes of psychological distress, burden, mastery, quality of patient-caregiver relationship, quality of life, and physical functioning.; Main Results: In total, the search identified 2102 records, of which we reviewed 144 in full text. We included eight studies. Four interventions focused on patient-caregiver dyads and four were aimed specifically at the caregiver. Heterogeneity of populations and methodologies precluded meta-analysis. Risk of bias varied, and all studies included only small numbers of neuro-oncology caregivers (13 to 56 participants). There was some evidence for positive effects of caregiver support on psychological distress, mastery, and quality of life (low to very low certainty of evidence). No studies reported significant effects on caregiver burden or quality of patient-caregiver relationship (low to very low certainty of evidence). None of the studies assessed caregiver physical functioning. For secondary outcomes (patient emotional or physical well-being; health economic effects), we found very little to no evidence for the effectiveness of caregiver support. We identified five ongoing trials.; Authors' Conclusions: The eight small-scale studies included employed different methodologies across different populations, with low certainty of evidence overall. It is not currently possible to draw reliable conclusions regarding the effectiveness of supportive interventions aimed at improving neuro-oncology caregiver well-being. More high-quality research is needed on support for family caregivers of people diagnosed, and living, with a brain or spinal cord tumour.

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Family Caregiving in Serious Illness in the United States: Recommendations to Support an Invisible Workforce

Family caregivers provide the vast majority of care for individuals with serious illness living in the community but are not often viewed as full members of the healthcare team. Family caregivers are increasingly expected to acquire a sophisticated understanding of the care recipient's condition and new skills to execute complex medical or nursing tasks, often without adequate preparation and support, and with little choice in taking on the role. This review draws on peer‐reviewed literature, government reports, and other publications to summarize the challenges faced by family caregivers of older adults in the context of serious illness and to identify opportunities to better integrate them into the healthcare workforce. We discuss promising approaches such as inclusion of family caregivers in consensus‐based practice guidelines; the “no wrong door” function, directing consumers to needed resources, regardless of where initial contact is made; and caregiver‐friendly workplace policies allowing flexible arrangements. We present specific recommendations focusing on research, clinical practice, and policy changes that promote family‐centered care and improve outcomes for caregivers as well as persons with serious illness.

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Supporting Working Carers: A Growing Challenge

The purpose of this paper is to highlight the challenges facing people juggling work with care and to explore how employers can develop a workplace culture that supports them.

One in seven UK employees is caring for an older, sick or disabled family member or friend who cannot manage without their support. Currently 600 carers leave work every day, a figure which is not sustainable given the challenges to UK productivity.

Supporting carers in the workplace is an issue which cannot be ignored:

  • The UK is facing a significant skills gap; over the next decade, the number of workers aged 16-49 is forecast to drop while the number of people aged 50-65 will rise
  • Increasing numbers of workers will be taking on caring responsibilities; with our ageing population and rising State Pension age, more people will be combining work with care
  • Carers will include many of your most talented and experienced employees; the peak age for caring is 45-64, an age at which many people will have gained valuable skills and knowledge in the workplace.

Organisations which fail to address these issues and do not create a workplace culture which supports carers are potentially at risk of:

  • Losing top talent and skills
  • Incurring recruitment and retraining costs
  • Facing productivity losses

All this impacts the bottom line - It has never been more important to address this growing workforce challenge and to reap the business benefits of creating a fundamentally fair and healthy workplace where everybody has equal opportunity to thrive.

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An uncertain practice: social work support for disabled people and carers moving across local authority boundaries in England

This article reports on a study of social work practice with care recipients choosing to relocate between English local administrative units. Data were collected from interviews with 20 social work practitioners from three areas, seeking their views through the use of vignettes. Participants reported that supporting relocation: requires time and planning; is conceptualised as a key transition for those moving; and exposes practitioners (and care recipients) to local variations and the potential for risk, and therefore uncertainty. New legal rights for care recipients may decrease the problems, but local variations will remain.

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Male working carers: a qualitative analysis of males involved in caring alongside full-time paid work

Given ageing demographics, the need for carers will increase and studies suggest that men are nearly as likely as women to become carers. The purpose of this study is to understand the specific challenges that male working carers experience with regard to social life and paid work. Participant recruitment was conducted through local carer support groups and male-dominated workplaces. Using a semi-structured format, 15 interviews were conducted. Findings suggest a variety of themes, including caring characteristics, the effects of caring, support systems and coping strategies. Our results indicate that the male working carer population faces specific challenges in the workplace and social settings.

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Engaging the person with young-onset dementia: working in partnership to support meaningful activity

Imelda cared for her husband through his journey with young-onset Alzheimer's disease. He was diagnosed at the age of 64 and died aged 68. This article describes many of the challenges that she faced in ensuring that her husband continued to experience purpose and meaning even as the ravages of the disease robbed him of his skills. She focuses on the need for the caregiver and the care professional to respond to the unique way in which the person being cared for engages with his or her world and to co-develop activities that are meaningful to them.

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Supporting carers in their careers

In the June edition of the British Ecological Society Bulletin The Niche, an article appeared that I wrote about student carers in the UK.  The BES is a huge network of people who work in the environmental sector in the UK, but also around the world, it’s a network of peers that I hope to move into in my career. I’m very happy to have appeared within it, but also a little daunted given the nature of the article. I have reproduced the article here, followed by a discussion about it.

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Creating Inclusive Spaces for Students in Higher Education with Caregiving Responsibilities: Guidance and Recommendations

This briefing provides an overview of findings from research led by Prof. Moreau that looks at the relationship between care and academia for different groups in Higher Education (HE) in England. The most recent publication is an SRHE report that explores experiences of senior academic staff who are caregivers, with previous research projects looking at other academics, including Early Career Researchers, and students. The research reports are listed in the references section overleaf if you would like to read about this subject in more detail. This particular document focuses on students with caregiving responsibilities. It presents recommendations for how practitioners and policy makers, at an institutional and national level, can work towards making academia a more inclusive space for these students. It follows a similar briefing paper published in June 2019, ‘Creating Inclusive Spaces for Academic Staff with Caregiving Responsibilities in Higher Education’.

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Creating Inclusive Spaces for Academic Staff with Caregiving Responsibilities: Guidance and Recommendations

This briefing provides an overview of findings from research led by Prof. Moreau that looks at the relationship between care and academia for different groups in Higher Education (HE) in England. The most recent publication is an SRHE report which explores experiences of senior academic staff who are caregivers, with previous research projects looking at other academics, including Early Career Researchers, and students. The research reports are listed in the references section overleaf if you would like to read about this subject in more detail. This particular document focuses on academics with caregiving responsibilities. It presents recommendations for how practitioners and policy makers, at an institutional and national level, can work towards making academia a more inclusive space for these academics.

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'From my point of view, my wife has recovered': A qualitative investigation of caregivers' perceptions of recovery and peer support services for people with bipolar disorder in a Chinese community

Background: Bipolar disorder (BD) is a chronic mental disorder, and family members play a key role in taking care of the affected individuals. The recovery movement has gradually transformed mental health services, for example, through the introduction of peer support services (sharing of expert-by-experience knowledge), and it has challenged the prevailing view that people with mental illness cannot recover.; Aims: Through this study, the researchers explored how family caregivers in a Chinese context conceptualise recovery, how caregivers interact with peer support workers (PSWs) and how they perceive peer support services.; Methods: Fourteen family caregivers from community settings participated in individual semi-structured interviews. The data were analysed through thematic analysis.; Results: Family caregivers had multifaceted definitions of recovery and had various degrees of contact with PSWs. The views and experiences shared by PSWs were hope-instilling for caregivers and changed their perception of BD and their loved ones. Some limitations of PSWs were also identified.; Conclusion: Social connectedness and functional outcomes were important indicators of recovery among Chinese family caregivers. Caregivers began to understand the benefits of PSWs after experiencing their services. Peer-led services could be a helpful support for both service users and family caregivers.;

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Dementia caregiver interventions in Chinese people: A systematic review

Aims: The aim of this systematic review was to examine the characteristics and the efficacy of dementia caregiving interventions among the Chinese population. Background: In recent years, an increasing number of dementia caregiving interventions have been developed for Chinese older adults living in Asia that aim to reduce caregivers' burden, depression and distress, and enhance quality of life. Little is known, however, on the nature and the efficacy of these interventions. Design: Systematic review with narrative summary. Data sources: We searched four databases for studies published in English between 1 January 1994–30 December 2017. Nineteen studies reported in 23 articles were included in the final analysis. Review methods: We used a set of criteria from the Cochrane Collaboration tool to assess for the risk of bias across studies. Results: We found that interventions varied in length, frequency, approach, and content, making comparisons across studies challenging. Caregivers' burden, depression, and distress were improved among most included studies. All studies that examined quality of life of caregivers (N = 6) showed improvement. Most of the interventions showed beneficial effects on care recipients' behavioural symptoms, agitation, and depression; cognitive function, however, failed to improve. Conclusion: Although the review found mixed results on intervention outcomes, the majority of interventions showed a potential to improve the health and well‐being of dementia caregivers and care recipients. This review provides suggestions for future dementia caregiving research in the Chinese population, such as inclusion of relevant theoretical frameworks and more rigorous research designs

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Caregiver Communication About Cancer: Development of a mhealth resource to support family caregiver communication burden

Objective: The aim of this study is to illustrate an evidence-based and theoretically informed mhealth resource (smartphone app) designed to provide communication support for informal cancer caregivers (friends or family members). Methods: An eight-step process was conducted: (a) review of existing print resources, (b) selection of theoretical framework for content development, (c) integration of stakeholder feedback and literacy assessment into an alpha print model, (d) review of existing mhealth resources, (e) development of prototype, (f) assessment of caregiver acceptability (n = 5), (g) assessment of quality and perceived impact by cancer providers (n = 26), and (h) acceptability testing with caregivers (n = 6). Results: Key stakeholders were integrated throughout development and user testing of this iOS smartphone app. The smartphone app consists of talking tips and resources for caregiver communication with the patient, family, far away family, and health care providers, as well as general information sharing features. Conclusions: This study demonstrates feasibility and development of an evidence-based and theory-driven mhealth resource to support caregiver communication about cancer. This is the first theory-driven mhealth application created to support the communication burden experienced by cancer caregivers. A larger study is needed to establish the efficacy of the app as an intervention for caregivers. 

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Impact of a student-driven wellness program for individuals with disabilities on caregivers and family members

Aim: Few studies have addressed impact of participation in exercise programs on caregivers or family members of individuals with disabilities.; Purpose: To evaluate the impact of interaction rich wellness program on family members or caregivers of participants.; Methods: Nine family members or caregivers were selected for interviews. Interviews were transcribed and analyzed using a thematic approach.; Results: Five themes were constructed from analysis of the interview data: benefit of class to self, positive feelings about participation, relationship dynamic, importance of classroom interaction, and burden of class. The first four themes occurred in caregivers despite individual burden determined by self-reported interview scores on the Zarit Burden interview.; Conclusion: This study demonstrated the impact of an interaction rich exercise program on wellness of participants with disabilities and respective caregivers or family members. Caregivers or family members do acknowledge benefits of the program to themselves. However, the program does not reduce caregiver burden. Implications for Rehabilitation Rehabilitation professionals should be cognizant of the potential for indirect benefit of rehabilitation or exercise programs on family members or caregivers of patients. Rehabilitation programs should consider the indirect benefit on the caregivers of patients when evaluating the burden of a program on caregivers. Rehabilitation professionals should focus on interpersonal interaction to aid in positive outcomes for both patients and caregivers.

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Comprehensive Support for Family Caregivers: Impact on Veteran Health Care Utilization and Costs

This study aimed to examine the early impact of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) on Veteran health care utilization and costs. A pre-post cohort design including a nonequivalent control group was used to understand how Veterans' use of Veteran Affairs health care and total health care costs changed in 6-month intervals up to 3 years after PCAFC enrollment. The control group was an inverse probability of treatment weighted sample of Veterans whose caregivers applied for, but were not accepted into, PCAFC. Veterans in PCAFC had similar acute care utilization postenrollment when compared with those in the control group, but significantly greater primary, specialty, and mental health outpatient care use at least 30, and up to 36, months postenrollment. Estimated total health care costs for PCAFC Veterans were $1,500 to $3,400 higher per 6-month interval than for control group Veterans. PCAFC may have increased Veterans' access to care.

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Realist Review: Understanding Effectiveness of Intervention Programs for Dementia Caregivers

Purpose Caring for patients with dementia is a challenging issue entailing heavy responsibility. Many interventions for caregivers have been developed, but their effectiveness is not clear. This study aimed to examine how, why, and under what circumstances interventions for dementia caregivers affected their burden of caring. Methods Authors used a realist review approach to explore the evidence for how different interventions reduce the burden of dementia caregivers. We completed the literature review about the burden of dementia caregivers and extracted the theoretical concepts to explain context-mechanism-outcome configuration why an intervention may be effective in some situations and not others. Six databases were searched for experimental or quasi-experimental studies conducted from 2008 to 2017. Of 1,225 screened studies, 10 studies were eligible for inclusion. Results None of the studies included all the derived contexts while explaining in detail the mechanism of the intervention effectiveness. Among contexts, the variable of other family members requiring care was not included in all studies. Among the analyzed studies, no studies have applied repeated intervention. Most studies included only some variables of context and mechanism, and these variables did not directly explain the effectiveness of intervention. The effect of outcome variables was significant for each study, and the effects of research intervention and national services could not be separately described. Conclusion Authors conclude that Korean culture's emphasis on relationships with others increases the burden of care. In context, Confucian norms and traditional femininity of Korea were reflected in the core. It is necessary to check the homogeneity of participants and the design of intervention to verify the effectiveness of the outcome variable of psychological burden.

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Levels of Satisfaction, Workload Stress and Support Amongst Informal Caregivers of Patients Receiving or Not Receiving Long-Term Home Nursing Care in Poland: A Cross-Sectional Study

The role of informal caregivers was included in the Assumptions of the Long-Term Senior Policy in Poland for 2014-2020. The document acknowledged the necessity of diagnosing the needs of informal caregivers of elderly people and to implement systemic solutions that would enable the provision of assistance for them. In response, this study aimed to describe the situation of caregivers of patients receiving versus patients not receiving Long-Term Home Nursing Care (LTHNC; i.e., a formal program including regular visits by a nurse specializing in home care) in terms of caregiver socio-demographic characteristics, health self-assessment, work overload, satisfaction derived from being a caregiver, and the quality of perceived support. A cross-sectional study was conducted using the Carers of Older People in Europe (COPE) Index in 2015 in the north-eastern part of Poland involving 170 caregivers of patients supported with LTHNC and 86 caregivers of patients staying at home and not receiving LTHNC. We found that caregivers for patients receiving LTHNC were significantly less overloaded with care work than caregivers for patients without LTHNC support (p < 0.001). LTHNC support was also related to the level of satisfaction with providing care: Caregivers for patients receiving LTHNC were significantly more satisfied with performing their role and felt greater support than caregivers for patients without LTHNC (p < 0.001). Our study provides evidence for a positive relationship between LTHNC and the situation of informal caregivers of dependent elderly people at home. A formal program of visits by a nurse specializing in long-term home care may facilitate the provision by caregivers of better informal care to patients staying at home.

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CE: Original Research: New Acute Symptoms in Older Adults with Cognitive Impairment: What Should Family Caregivers Do?

The authors assessed the frequency with which family caregivers of older veterans with cognitive impairment sought guidance for new physical or behavioral symptoms and described the characteristics of such events, including the diagnoses and advice given. Background: When older adults with cognitive impairment develop new physical or behavioral symptoms, their family caregivers face a difficult decision: whether and when to seek professional medical care. Most family caregivers lack formal training in assessment and may have difficulty making such decisions. The Veterans Health Administration's home-based primary care (HBPC) program, which is widely available, offers community-dwelling frail veterans and their family caregivers guidance, with the goal of reducing hospitalization and institutionalization in long-term care facilities. Objective: This study sought to assess the frequency with which family caregivers of cognitively impaired older adults sought prehospital guidance from health care professionals when that resource was available to them, and to describe the characteristics of such events. Methods: This study used a retrospective chart review of patients who were enrolled in the Orlando Veterans Affairs Medical Center HBPC program for at least one month between October 1, 2013, and September 30, 2014; had a diagnosis indicative of cognitive impairment (Alzheimer's disease, vascular dementia, or mild cognitive impairment); had a dedicated family caregiver; and were not enrolled in hospice care. Data were collected from data collection templates and nurses' narrative notes. Univariate descriptive analyses were conducted regarding the type of staff contacted by family caregivers, the presenting diagnoses, the guidance offered by staff, and the number of unplanned acute care encounters. Results: Among the 215 patients studied, there were 254 unplanned acute care encounters (including ED visits followed by discharge to home and ED visits resulting in hospital admission). Family caregivers sought guidance from a health care professional 22% of the time before such an encounter. The presenting clinical issues were most often new problems (43%) that included falls, feeding tube problems, fever, new pain, rash or other skin problems, and unexplained edema. Overall, 25% of all unplanned acute care encounters were for reasons considered potentially avoidable. About half of the patients who were subsequently hospitalized had symptoms of delirium, indicating that their illness had significantly advanced before presentation. Conclusions: It's important for health care professionals to ensure that family caregivers of cognitively impaired older adults can access professional guidance readily when facing decisions about a loved one's care, especially when there is an acute onset of new symptoms. Teaching caregivers how to recognize such symptoms early in order to prevent exacerbations of chronic illness and subsequent hospitalization should be a high priority. Our findings underscore the need to do so, so that caregivers can best use the resources that HBPC programs have (or ought to have) in place, in particular 24/7 guidance and decision assistance.

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Using a six-step co-design model to develop and test a peer-led web-based resource (PLWR) to support informal carers of cancer patients

Objective: To co-design and test the acceptability of a peer-led web-based resource (PLWR) for cancer carers to provide practical and emotional advice on common issues. Methods: A six-step co-design model informed PLWR development. Content was developed through three cancer carer workshops and monthly meetings with an expert advisory team (n = 12). User-testing was conducted via web-based survey and telephone interview. Descriptive statistics and thematic analysis were utilised. Google analytics explored site visits, commonly used components, and time spent using the PLWR. Results: The PLWR was developed to deliver cancer carer information tailored to each stage of the illness trajectory regardless of cancer type, in the form of videoed personal experiences. From November to May 2018, there were 2789 unique visits to the PLWR with 743 returners. The majority of time was spent on the full unclipped peer stories (414 views), and diagnosis-specific information (159 views), with less time spent on bereavement, cancer treatment, or self-care (120 views each). Fifty-five individuals completed the resource evaluation, with 10 participating in telephone interviews. Fifty-four carers rated the resource as excellent, useful, and easy to use. The web-based videos were regarded as convenient as and less burdensome than written information. The resource provided relevant information, potentially reducing isolation and uncertainty. Conclusion: The content and design of the PLWR appear acceptable to cancer carers. The co-design model is an effective way to develop appropriate information for service users and could be utilised as a framework for development of other interventions in a variety of disease groups.

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Foreign Domestic Workers and Eldercare in Singapore: Who Hires Them?

In Singapore, policy makers expect families to remain actively involved in the care of their frail older relatives, as manifestly expressed in its Many Helping Hands approach to long-term care. To enable families to fulfill this expectation, the government has enacted policies that encourage the hiring of foreign domestic workers (FDWs) to complement or supplement informal caregiving efforts. Using the Andersen Behavioral Model, we were interested in identifying caregiver and care receiver characteristics that might predict the hiring of FDWs. With data from a convenience sample of 488 informal caregivers, we ran logistic regression regressing the hiring of an FDW on various predisposing, enabling, and need factors. Of interest, enabling factors such as household income, housing type, and educational level were predictive of hiring an FDW in the home. Only one need factor, time spent in caregiving, was predictive of the increased likelihood to hire an FDW. Policies that encourage the marketization of care are likely to favor those with financial means and inadvertently ignore the caregiving burdens of lower income families. In addition, we suggest research and policies to ensure the well-being and protection of FDWs who have become a key component of the long-term care policy and practice in Singapore.

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Acceptability of psychosocial interventions for dementia caregivers: a systematic review

Background: Most of patients with dementia are cared for by family members. Caring for people with dementia is challenging; approximately 30-55% of caregivers suffered from anxiety or depressive symptoms. A range of studies have shown that psychosocial interventions are effective and can improve caregivers' quality of life, reduce their care burden, and ease their anxiety or depressive symptoms. However, information on the acceptability of these interventions, despite being crucial, is under-reported.; Methods: Systematic searches of databases were conducted for literature published on EMBASE, PubMed, The Cochrane Library, Web of Science, and PsycARTICLES until August 2017 and the searches were updated on June 2018. The selection criteria included primary studies with data about the acceptability of psychosocial interventions for informal caregivers and publications written in English. Two authors independently selected studies, extracted study characteristics and data, assessed the methodological quality of the included studies by using the Effective Public Health Practice Project (EPHPP) Quality Assessment Tool and Critical Appraisal Skills Programme (CASP) Qualitative Research Checklist, and conducted a narrative synthesis of quantitative and qualitative data.; Results: A total of 10,610 abstracts were identified through systematic searches. Based on screening titles and abstracts, 207 papers were identified that met the criteria for full paper review, with 42 papers from 13 different countries meeting the inclusion criteria. We found high- and moderate-quality evidence showing psychosocial interventions were acceptable, with important benefits for caregivers. Facilitators of acceptability included caregivers' need for intervention, appropriate content and organization of the intervention, and knowledge and professionalism of the staff. Barriers to acceptability included participants' poor health status and low education levels, caregiving burden, change of intervention implementers, and poor system performance of interventions.; Conclusion: There is preliminary evidence to support the acceptability of psychosocial interventions for dementia caregivers. However, the available supporting evidence is limited, and there is currently no adequate information from these studies indicating that the acceptability has received enough attention from researchers. More well-designed studies assessing psychosocial interventions are needed to give specific statements about acceptability, and the measure of acceptability with psychosocial interventions should be more comprehensive.

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Resources for the Family Caregiver: A Review of the Family Caregiver Alliance and the AARP Caregiving Resource Center

The rate of family caregiving is steadily increasing as baby boomers retire and their loved ones step into the role as family caregiver. Whether caregiving is a sudden or anticipated role, caregivers are often unsure of where to turn for information or aide, and face many challenges including stress, depression, anxiety, and financial burdens. Credible, easy, and useful online resources are abundant, and the Family Caregiver Alliance and the AARP Caregiving Resources Center are no exception. Each provide excellent starting points for caregivers new to the role, or seasoned caregivers seeking additional information. Other sources compliment these pivotal sites, but each can stand alone as a primary source for family caregiving information.

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A randomised phase II trial to examine feasibility of standardised, early palliative (STEP) care for patients with advanced cancer and their families [ACTRN12617000534381]: a research protocol

Background: Current international consensus is that 'early' referral to palliative care services improves cancer patient and family carer outcomes; however, in practice, these referrals are not routine. Uncertainty about the 'best time' to refer has been highlighted as contributing to care variation. Previous work has identified clear disease-specific transition points in the cancer illness which heralded subsequent poor prognosis (less than 6 months) and which, we contest, represent times when palliative care should be routinely introduced as a standardised approach, if not already in place, to maximise patient and carer benefit. This protocol details a trial that will test the feasibility of a novel standardised outpatient model of early palliative care [Standardised Early Palliative Care (STEP Care)] for advanced cancer patients and their family carers, with referrals occurring at the defined disease-specific evidence-based transition points.The aims of this study are to (1) determine the feasibility of conducting a definitive phase 3 randomised trial, which evaluates effectiveness of STEP Care (compared to usual best practice cancer care) for patients with advanced breast or prostate cancer or high grade glioma; (2) examine preliminary efficacy of STEP Care on patient/family caregiver outcomes, including quality of life, mood, symptoms, illness understanding and overall survival; (3) document the impact of STEP Care on quality of end-of-life care; and (4) evaluate the timing of palliative care introduction according to patients, families and health care professionals.; Methods: Phase 2, multicenter, open-label, parallel-arm, randomised controlled trial (RCT) of STEP Care plus standard best practice cancer care versus standard best practice cancer care alone.; Discussion: The research will test the feasibility of standardised palliative care introduction based on illness transitions and provide guidance on subsequent development of phase 3 studies of integration. This will directly address the current uncertainty about palliative care timing.; Trial registration: Australian New Zealand Clinical Trials Registry ACTRN12617000534381.

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An Examination of a Simplified Stroke Rehabilitation Program for Reducing Family Caregiver's Burden for Stroke Patients in Rural China

With stroke being one of the leading causes of disability worldwide, families and social systems may face strain as they adjust to a caregiving role. This strain may be amplified in family systems living in rural areas due to limited access to resources. Thus, it is important for helping professionals such as couple, marriage, and family therapists to understand what facets of this disability are linked with caregiver strain as well as to explore and understand various interventions that may ease caregiver burden. Using existing data from 177 pairs of stroke patients and their family caregivers in rural Mainland China, the present study utilized a moderation analysis to examine (1) the association between stroke patient physical functioning, patient mental health, and their family caregiver burden and (2) how a developed patient rehabilitation intervention program for caregivers moderated the association between patient physical functioning as well as mental health and caregiver burden 6-month post intervention. Results suggested that better patient physical functioning were related to lower levels of caregiver burden (b = − 1.418, p <.001, β = − 0.33). However, the developed rehabilitation intervention program did not significantly moderate the association between stroke patient physical functioning as well as mental health and caregiver burden. These findings provide insight into correlates of stroke patients' caregiver burden in rural China. Development of more effective rehabilitation programs and interventions for stroke patients and their family caregivers as well how couple, marriage, and family therapists may be uniquely qualified to contribute to such interventions is discussed.

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Organising Support for Carers of Stroke Survivors (OSCARSS): study protocol for a cluster randomised controlled trial, including health economic analysis

Background: Stroke often results in chronic disability, with partners and family members taking on the role of informal caregiver. There is considerable uncertainty regarding how best to identify and address carers' needs. The Carer Support Needs Assessment Tool (CSNAT) is a carer-led approach to individualised assessment and support for caregiving that may be beneficial in palliative care contexts. CSNAT includes an implementation toolkit. Through collaboration, including with service users, we adapted CSNAT for stroke and for use in a UK stroke specialist organisation providing long-term support. The main aims of OSCARSS are to investigate the clinical and cost-effectiveness of CSNAT-Stroke relative to current practice. This paper focuses on the trial protocol, with the embedded process evaluation reported separately. Methods: Longitudinal, multi-site, pragmatic, cluster randomised controlled trial with a health economic analysis. Clusters are UK services randomised to CSNAT-Stroke intervention or usual care, stratified by size of service. Eligible carer participants are: adults aged > 18 years; able to communicate in English; referred to participating clusters; and seen face-to-face at least once by the provider, for support. The 'date seen' for initial support denotes the start of intervention (or control) and carers are referred to the research team after this for study recruitment. Primary outcome is caregiver strain (FACQ - Strain) at three months after 'date seen'. Secondary outcomes include: caregiver distress; positive caregiving appraisals (both FACQ subscales); Pound Carer Satisfaction with Services; mood (HADs); and health (EQ-5D5L) at three months. All outcomes are followed up at six months. Health economic analyses will use additional data on caregiver health service utilisation and informal care provision.Discussion: OSCARSS is open to recruitment at the time of article submission. Study findings will allow us to evaluate the clinical and cost-effectiveness of the CSNAT-Stroke intervention, directed at improving outcomes for informal carers of stroke survivors. Trial findings will be interpreted in the context of our embedded process evaluation including qualitative interviews with those who received and provided services as well as data on treatment fidelity. OSCARSS will contribute to knowledge of the unmet needs of informal stroke caregivers and inform future stroke service development.Trial Registration: ISRCTN Registry, ISRCTN58414120 . Registered on 26 July 2016.

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Improving health-promoting self-care in family carers of people with dementia: a review of interventions

Background: Providing care for a family member with dementia can leave little time for carers to look after their own health needs, which makes them more susceptible to mental and physical health problems. This scoping review aimed to explore potential health benefits of interventions aimed at improving health-promoting self-care in family carers of people with dementia.; Methods: A scoping review was carried out using Arksey and O'Malley's methodological framework. EMBASE, MEDLINE, PsycINFO and Google Scholar were consulted. Original and peer-reviewed research published in English up to April 2017 were included. Publications were selected by two reviewers independently. Eight experts from several countries provided extra relevant information, which was triangulated with the review results. A narrative approach was used to describe and discuss the review findings.; Results: Seven interventions were identified. These were highly heterogeneous in content, method of delivery, and outcome measures. None was specifically focused on improving and evaluating health-promoting self-care, instead they often focused on health promotion and healthy lifestyle (eg, physical activity). Some of the multi-component interventions included "self-care" as a domain, but none used a specific measure of health-promoting self-care, so we were unable to affirm that the improvements found in the interventions were due to an improvement in this area. Interventions helped reduce carer depression and burden and increased quality of life, positive affect, and physical activity. The expert panel recommended to consider carers' preparedness and capacity to adhere to self-care practices, as well as carers' age and culture. Future interventions should be context specific, flexible, and person-centered.; Conclusion: Psychosocial interventions may improve health-promoting self-care behavior, but more research is needed to establish efficacy. Interventions should be flexible, use a person-centered approach, be implemented with fidelity and use the right dosage.

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The imperative of caring for the dependent elderly person

This text presents an overview of aging in Brazil and information that highlights the need to create instruments to deal with the exponential increase of the elderly population, particularly those who lose their physical, cognitive, mental/emotional, and social autonomy. Examples of public policies created by European countries, notably Spain, show how they act to protect the most vulnerable individuals and provide support to their families, especially to the informal caregivers. The whole process of protection for the long-lived is perceived as a form of social solidarity in which the State and sub-national entities, society, the families and the elderly people themselves participate.

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Invisible partners in care: Snapshot of well-being among caregivers receiving comprehensive support from Veterans Affairs

Background and aims: Since May 2011, over 23 000 caregivers of Veterans seriously injured on or after September 11, 2001 have enrolled in the Program of Comprehensive Assistance for Family Caregivers (PCAFC). PCAFC provides caregivers training, a stipend, and access to health care. The aim of this study is to describe the characteristics of caregivers in PCAFC and examine associations between caregiver characteristics and caregiver well-being outcomes.; Methods: We sent a web survey invitation to 10 000 PCAFC caregivers enrolled as of September 2015. Using linear and logistic regressions, we examine associations between PCAFC caregiver characteristics and caregiver outcomes: perceived financial strain, depressive symptoms (Center for Epidemiologic Studies Depression Scale [CESD-10]), perceived quality of Veteran's Veterans Health Administration (VHA) care, and self-reported caregiver health.; Results: We had complete survey data for 899 respondents. Since becoming a caregiver, approximately 50% of respondents reported reducing or stopping work. Mean time spent providing care was 3.8 years (median 3, IQR 1-5) with an average of 4.9 weekdays (median 5, IQR 5-5) and 1.9 weekend days (median 2, IQR 2-2). The mean CESD-10 score was 8.2 (median 7, 4-12), at the cutoff for screening positive for depressive symptoms. A longer duration of caregiving was associated with having 0.08 increase in rating of financial strain (95% CI, 0.02-0.14). Caregiver rating of the Veteran's health status as "fair" or better was a strong predictor of better caregiver outcomes, ie, self-reported caregiver health. However, higher levels of education were associated with worse caregiver outcomes, ie, lower global satisfaction with VHA care, higher CESD-10 score, and higher rating of financial strain.; Conclusions: Higher depressive symptoms among longer duration caregivers, coupled with high rates of reductions in hours worked, suggest interventions are needed to address the long-term emotional and financial needs of these caregivers of post-9/11 Veterans and identify subpopulations at risk for worse outcomes.

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Dyadic yoga program for patients undergoing thoracic radiotherapy and their family caregivers: Results of a pilot randomized controlled trial

Objective: Thoracic radiotherapy (TRT) may result in toxicities that are associated with performance declines and poor quality of life (QOL) for patients and their family caregivers. The purpose of this randomized controlled trial was to establish feasibility and preliminary efficacy of a dyadic yoga (DY) intervention as a supportive care strategy. Methods: Patients with stage I to III non-small cell lung or esophageal cancer undergoing TRT and their caregivers (N = 26 dyads) were randomized to a 15-session DY or a waitlist control (WLC) group. Prior to TRT and randomization, both groups completed measures of QOL (SF-36) and depressive symptoms (CES-D). Patients also completed the 6-minute walk test (6MWT). Dyads were reassessed on the last day of TRT and 3 months later. Results: A priori feasibility criteria were met regarding consent (68%), adherence (80%), and retention (81%) rates. Controlling for relevant covariates, multilevel modeling analyses revealed significant clinical improvements for patients in the DY group compared with the WLC group for the 6MWT (means: DY = 473 m vs WLC = 397 m, d = 1.19) and SF-36 physical function (means: DY = 38.77 vs WLC = 30.88; d = .66) and social function (means: DY = 45.24 vs WLC = 39.09; d = .44) across the follow-up period. Caregivers in the DY group reported marginally clinically significant improvements in SF-36 vitality (means: DY = 53.05 vs WLC = 48.84; d = .39) and role performance (means: DY = 52.78 vs WLC = 48.59; d = .51) relative to those in the WLC group. Conclusions: This novel supportive care program appears to be feasible and beneficial for patients undergoing TRT and their caregivers. A larger efficacy trial with a more stringent control group is warranted. 

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Acceptance and treatment effects of an internet‐delivered cognitive‐behavioral intervention for family caregivers of people with dementia: A randomized‐controlled trial

Objectives: The study evaluated the efficacy of an internet‐delivered cognitive‐behavioral intervention for caregivers of people with dementia and examined acceptance of program characteristics. Method: Thirty‐nine caregivers (Mage = 62.11 ± 9.67, 78.4% female) were enrolled in a 2 × 3 randomized‐controlled trial (RCT) that compared an intervention and wait‐list control group. A cognitive‐behavioral intervention program was adapted for delivery via an internet platform. Participants exchanged eight weekly messages with a therapist. Results: Treatment satisfaction and acceptance of the program were high. Well‐being increased over the intervention duration and intervention group participants were better able to cope with the anticipated death of the care recipient and utilized more psychosocial resources after the intervention ended. Effects were not maintained until follow‐up and there were no treatment effects for depression and burden of care. Conclusions: Internet‐delivered cognitive‐behavioral interventions are suitable for caregivers. A larger RCT needs to investigate possible combinations of classic and internet‐delivered programs and confirm efficacy.

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Effects of Online Yoga and Tai Chi on Physical Health Outcome Measures of Adult Informal Caregivers

Aims: This study aimed to investigate the effects of online Vinyasa Yoga (VY) and Taijifit™ (12 weeks) in informal caregivers (≥18 years of age).; Methods: Twenty-nine participants were randomized to two groups: VY (n = 16, 55.87 ± 12.31 years) or Taijifit™ (n = 13, 55.07 ± 12.65 years).; Main Outcome Measures: Prior to and following the study, assessments were made for muscle strength (1-RM leg press, chest press, and handgrip), muscle endurance (leg press and chest press; maximal number of repetitions performed to fatigue at 80% and 70% baseline 1-RM, respectively), abdominal endurance (maximum number of consecutive curl-ups to fatigue), tasks of functionality (dynamic balance and walking speed), and flexibility (sit and reach).; Results: There was a significant increase over time for muscle strength, muscle endurance, tasks of functionality, and flexibility (P = 0.001). The VY group experienced a greater improvement in chest press endurance (VY: pre 19.25 ± 5.90, post 28.06 ± 7.60 reps; Taijifit™ pre 15.69 ± 4.49, post 21.07 ± 5.85 reps; P = 0.019) and abdominal endurance (VY: pre 37.12 ± 31.26, post 68.43 ± 55.07 reps; Taijifit™ pre 19.23 ± 19.00, post 32.07 ± 20.87 reps; P = 0.034) compared to the Taijifit™ group.; Conclusions: VY and Taijifit™ are effective for improving muscle strength and endurance, tasks of functionality, and flexibility in informal caregivers. VY led to greater gains in chest press endurance and abdominal curl-ups.

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Interventions to address burden among family caregivers of persons aging with TBI: A scoping review

Purpose: To capture the scope of literature exploring interventions for caregivers of aging persons with TBI. Methods: A scoping review of peer reviewed literature was conducted in two phases. Phase I: Searching seven databases, two independent raters screened articles using a set of predetermined criteria. Included articles were reviewed, and categorized according to common themes. Phase II: Five stakeholders were engaged in a consultation. A content analysis was performed by extracting statements from each interview using an inductive strategy, and organizing each into themes. Findings: A total of 11 articles were included in the final analysis. Inter-rater reliability was assessed at both the title and abstract search [98.8% agreement; k = 0.3425 (95% CI,.246 to.439), p < .05]; and the full-text review [83% agreement; k = 0.542 (95% CI, 0.340 to 0.745), p < .05] phases. Seven articles identified potential interventions, and four identified and evaluated an intervention. Interventions targeted subjective burden (n = 4) and objective burden (n = 4), with caregiver knowledge and skill development (n = 3) classified as a sub-category of objective burden. Stakeholders overwhelmingly emphasized the need for interventions to reduce objective burden. Implications: Included articles were primarily composed of levels six and seven evidence, suggesting that this literature is in an early stage of development. Future research should emphasize the development and evaluation of interventions to reduce objective burden.

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Transitioning into the caregiver role following a diagnosis of Alzheimer's disease or related dementia: A scoping review

Objectives: To identify experiences, needs, interventions and outcomes for caregivers of persons with Alzheimer's disease or related dementia as they transition into this new role following diagnosis.; Design: Scoping review of published literature.; Data Sources: A search for published articles was conducted in PsycINFO, Scopus, Ovid and Web of Science databases.; Review Methods: The Arksey and O'Malley methodological framework guided the review. Studies were screened independently for inclusion by two persons. A total of 955 studies, after duplicates removed, were found by the database search. From these, 127 full-text articles were retained through the screening of titles and abstracts by two reviewers. The two reviewers assessed 46 full-text articles for eligibility. The final 29 studies identified caregiver experiences, needs, and interventions during the period following a diagnosis of Alzheimer's disease or related dementia in the scoping review.; Results: Twenty-nine studies were organized around three major categories: i) family caregiver experiences on receiving the diagnosis (n = 23), ii) needs during this time of transition (n = 18), and iii) interventions and outcomes to support their transition into the caregiver role (n = 5). While studies may have addressed more than one topic, 16 studies intersected categories of both caregiver experience and needs, and one study intersected categories of needs and interventions. There were several studies that focused more specifically on the caregiver's initial reactions to a diagnosis of Alzheimer's disease or related dementia (n = 9), the emotional responses to the diagnosis (n = 14), changes in personal relationships and responsibilities with a new role (n = 16). Caregiver needs following the diagnosis included knowledge and information (n = 14), emotional and psychological support (n = 11), and assistance with care planning (n = 7). Five papers examined interventions specifically tailored to caregiver needs at this juncture, which support the transition into the caregiver role.; Conclusions: The time of receiving a diagnosis of Alzheimer's disease or related dementia is a critical period in the process of transitioning into caregiver role. This period marks a new phase in the process of caring by family caregivers. Thus, it is important to fully understand the experiences and needs of caregivers and effective interventions in order to better support their transition into this new role.

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Challenges to and Strategies for Formal Service Utilization among Caregivers in an Underserved Community

Family caregivers face enormous challenges when attempting to oversee the medical, legal, financial, and daily affairs of loved ones with chronic or life-limiting illness. While formal services and agencies exist to assist caregivers with some of these tasks, caregivers in underserved communities do not utilize these services, or utilize them with unsatisfactory results. This study used focus groups (N = 5 groups) with underserved, minority caregivers (N = 22) to explore their experiences related to care provision, including barriers to support service use and challenges navigating systems related to the broad spectrum of caregiving demands. Thematic content analysis revealed three main themes: (1) prior difficulties with formal service use, (2) difficulties navigating financial, legal, and medical systems, and (3) caregivers' personal strategies to address challenges associated with formal service use and systems navigation. Findings from this study identify underserved caregivers' challenges in utilizing formal services, as well as caregiver-identified strategies for supporting their caregiving activities.

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Supporting you to take a break

Finding time to have a break from your caring role is vital – welcome to our video series

  • Facing guilt and anxiety: It’s all too easy to lose yourself in your caring role, but you owe it to yourself to look after yourself too
  • Where do I start? Carers share their experiences and tips, explaining why it’s vital to get advice and support
  • Sources of support: Help is available in many forms. Whether you need peer support or professional guidance, you’re not alone
  • Importance of a break - Wales spotlight: Carers in Wales share their views on how taking a break is possible and important
  • Carer stories: It often helps to hear from people in the same situation. Here, carers share their personal experiences and tips
  • Need nore information? This is where we provide all the detail about the variety and range of breaks available to support carers
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Recognising and managing the psychosocial needs of family carers: It's time for change

This editorial discusses the availability of resources to support carers and recommends a better focus on family-centred care.

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Caring for the elderly at work and home: Can a randomized organizational intervention improve psychological health?

Although job stress models suggest that changing the work social environment to increase job resources improves psychological health, many intervention studies have weak designs and overlook influences of family caregiving demands. We tested the effects of an organizational intervention designed to increase supervisor social support for work and nonwork roles, and job control in a results-oriented work environment on the stress and psychological distress of health care employees who care for the elderly, while simultaneously considering their own family caregiving responsibilities. Using a group-randomized organizational field trial with an intent-to-treat design, 420 caregivers in 15 intervention extended-care nursing facilities were compared with 511 caregivers in 15 control facilities at 4 measurement times: preintervention and 6, 12, and 18 months. There were no main intervention effects showing improvements in stress and psychological distress when comparing intervention with control sites. Moderation analyses indicate that the intervention was more effective in reducing stress and psychological distress for caregivers who were also caring for other family members off the job (those with elders and those "sandwiched" with both child and elder caregiving responsibilities) compared with employees without caregiving demands. These findings extend previous studies by showing that the effect of organizational interventions designed to increase job resources to improve psychological health varies according to differences in nonwork caregiving demands. This research suggests that caregivers, especially those with "double-duty" elder caregiving at home and work and "triple-duty" responsibilities, including child care, may benefit from interventions designed to increase work-nonwork social support and job control.

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A Tablet App- and Sensor-Based Assistive Technology Intervention for Informal Caregivers to Manage the Challenging Behavior of People With Dementia (the insideDEM Study): Protocol for a Feasibility Study

Background: Despite the enormous number of assistive technologies (ATs) in dementia care, the management of challenging behavior (CB) of persons with dementia (PwD) by informal caregivers in home care is widely disregarded. The first-line strategy to manage CB is to support the understanding of the underlying causes of CB to formulate individualized nonpharmacological interventions. App- and sensor-based approaches combining multimodal sensors (actimetry and other modalities) and caregiver information are innovative ways to support the understanding of CB for family caregivers.; Objective: The main aim of this study is to describe the design of a feasibility study consisting of an outcome and a process evaluation of a newly developed app- and sensor-based intervention to manage CB of PwD for family caregivers at home.; Methods: In this feasibility study, we perform an outcome and a process evaluation with a pre-post descriptive design over an 8-week intervention period. The Medical Research Council framework guides the design of this feasibility study. The data on 20 dyads (primary caregiver and PwD) are gathered through standardized questionnaires, protocols, and log files as well as semistructured qualitative interviews. The outcome measures (neuropsychiatric inventory and Cohen-Mansfield agitation inventory) are analyzed by using descriptive statistics and statistical tests relevant to the individual assessments (eg, chi-square test and Wilcoxon signed-rank test). For the analysis of the process data, the Unified Theory of Acceptance and Use of Technology is used. Log files are analyzed by using descriptive statistics, protocols are analyzed by using documentary analysis, and semistructured interviews are analyzed deductively using content analysis.; Results: The newly developed app- and sensor-based AT has been developed and was evaluated until July in 2018. The recruitment of dyads started in September 2017 and was concluded in March 2018. The data collection was completed at the end of July 2018.; Conclusions: This study presents the protocol of the first feasibility study to encompass an outcome and process evaluation to assess a complex app- and sensor-based AT combining multimodal actimetry sensors for informal caregivers to manage CB. The feasibility study will provide in-depth information about the study procedure and on how to optimize the design of the intervention and its delivery.; International Registered Report Identifier (irrid): DERR1-10.2196/11630.

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Caring for the person with cancer and the role of digital technology in supporting carers

Purpose: Informal carers may experience a range of unmet needs during the caring period and, at times, lack support to adequately manage care of the person with cancer and balance personal family and work commitments. The aim of this study was to understand the needs of informal carers of people with cancer and how digital technology may be used to address carers' needs.; Methods: Focus groups and semi-structured interviews were conducted with 45 carers. Carers discussed supports and services they used to address their needs, barriers to accessing support, and how digital technology could assist in meeting their needs.; Results: Carers used informal support such as friends and family and formal support including respite and community groups during the caring period. Barriers to accessing support included reluctance to seek external help, sensitivities associated with prioritising carers' needs over patients' needs, and the adequacy of information received. Technology was reported to have the potential to allow carers' privacy to seek support; however, carers' attitudes towards technology differed.; Conclusions: Carers require support during the caring period to help balance their own needs with the needs of the person receiving cancer treatment. Digital technology may provide an opportunity to deliver support to carers; however, further research is needed to assess the appropriateness of these interventions to inform improved health outcomes for this vulnerable group.

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A Randomized Controlled Trial of Group Psychoeducation for Carers of Persons With Borderline Personality Disorder

Carers of persons with borderline personality disorder (BPD) experience high burden. Treatment guidelines advocate involving carers in comprehensive therapy approaches. This study is a randomized controlled trial of group psychoeducation, compared to waitlist. Group psychoeducation involved 6–8 carers per group and focused on improving relationship patterns between carers and relatives with BPD, psychoeducation about the disorder, peer support and self-care, and skills to reduce burden. Carers were randomized into intervention (N = 33) or waitlist (N = 35). After 10 weeks, those in the intervention reported improvements in dyadic adjustment with their relative, greater family empowerment, and reduced expressed emotion, sustained after 12 months. There were also improvements in carers' perceptions of being able to play a more active role, such as interacting with service providers. This study demonstrates that providing structured group programs for carers can be an effective way of extending interventions to a group experiencing high burden. 

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Hospice Bereavement Service Delivery to Family Members and Friends With Bereavement-Related Mental Health Symptoms

Objectives: A sizable minority of those who lose a loved one in hospice will experience symptoms of bereavement-related mental health disorders. Though hospices offer services to bereaved informal caregivers (family members or friends) of patients, little is known about services offered or interest in them. Therefore, we sought to assess services offered by hospice staff and interest expressed by bereaved informal caregivers with symptoms of depression, anxiety, or complicated grief (CG).; Methods: De-identified electronic bereavement care charts of 3561 informal caregivers who lost someone in a large urban metropolitan hospice from October 1, 2015, to June 30, 2016, were reviewed.; Results: Of bereaved informal caregivers in the sample, 9.4% (n = 333) were positive for symptoms of depression, anxiety, or CG. The symptom-positive family members/friends were more likely than other family members/friends to be offered mailings, one-to-one counseling, telephone calls, and reference material. However, interest in most services by symptom-positive caregivers was low, with only 6% interested in one-to-one counseling and 7% interested in outside referral.; Discussion: The findings suggest that hospices offer a range of services to family members or friends with symptoms of anxiety, depression, and CG, but that there can be a gap between what is offered and in the interest levels of the bereaved. Engagement with symptomatic family members and friends could be enhanced in future work.

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Problem-solving therapy reduces subjective burden levels in caregivers of family members with mild cognitive impairment or early-stage dementia: Secondary analysis of a randomized clinical trial

Objectives: Interventions addressing burden have limited impact among long-term family caregivers. We examined whether problem-solving therapy (PST) would reduce burden levels of caregivers of individuals diagnosed with mild cognitive impairment (MCI) or early-stage dementia (AD).; Methods: Caregivers (N = 73) randomly received PST or nutritional training (NT). Burden measures were assessed over 1-year post-intervention.; Results: Relative to NT, caregivers receiving PST endorsed improved perceived burden levels over time, regardless of the type of caregiver. Distress over the care recipient's dementia-related behaviors remained low over time among MCI caregivers receiving PST, while these burden levels among MCI caregivers receiving NT rose over time. AD caregivers receiving PST endorsed reductions in these burden levels over time, while AD caregivers in the NT group endorsed higher burden levels over time.; Conclusion: PST, taught early in the caregiving trajectory, improves subjective burden levels among caregivers of family members with relatively mild cognitive deficits.

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Telephone interventions, delivered by healthcare professionals, for providing education and psychosocial support for informal caregivers of adults with diagnosed illnesses

Plain language summary

Background Caregivers providing care to a family member, friend, or neighbour experience the role in differing ways. Some caregivers may find themselves in a caring role for which they are ill prepared and professional support is essential. This review examined whether telephone support interventions delivered by healthcare professionals had positive benefits on a range of outcomes including quality of life, burden (the experience of strain or load), skill acquisition (e.g. problem‐solving), psychological health (e.g. depression), knowledge, physical health, family functioning, satisfaction, or cost, for unpaid caregivers in the community. A telephone support intervention is one that is delivered via the telephone and designed to provide knowledge, advice, or help to caregivers to enable them to manage their own well‐being or that of the person they care for. It is an easily accessible method of providing support irrespective of geographical location. Studies that compared telephone support to usual care or to non‐telephone‐based professional support interventions were included.

Study characteristics We included 21 studies involving 1,690 caregivers caring for persons with a range of diagnosed conditions. Caregiver ages ranged from 19 years to 87 years. Most were female and caring for a family member. The majority were spouses, in particular wives, except for one study that mainly focused on adult children. Most caregivers had greater than secondary school education. Eighteen studies reported funding from reputable sources.

Key results Nineteen studies (18 studies contributing data) compared telephone support interventions and usual care. Telephone support interventions probably have little or no effect on caregiver quality of life (4 studies, 364 caregivers) and may have little effect on burden (9 studies, 788 caregivers) compared to usual care on completion of the intervention. Although anxiety may be slightly reduced and preparedness to care slightly improved following the intervention, we are uncertain about the effects on depression and overall, telephone interventions may have little or no effect on the outcomes assessed by this review. High satisfaction with the intervention was reported in six studies that measured this outcome, but no comparative data from usual care groups was reported. Two studies compared telephone and non‐telephone‐based support interventions. There may be little or no evidence of an effect of telephone support when compared non‐telephone‐based support interventions for any reported outcome. No adverse events were measured or reported in any of the included studies.

Quality of evidence The quality of the evidence was assessed as very low to moderate across outcomes, thus reducing confidence in the findings. Many of the results were based on data from single studies with few participants. Larger well‐designed studies are required to determine the effects of telephone support interventions.

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Caregiver Burden and Work Productivity Among Japanese Working Family Caregivers of People with Dementia

Background: We examined the association between caregiver burden and work productivity (i.e., absenteeism, presenteeism, and overall work impairment) among working family caregivers of people with dementia and whether job characteristics (i.e., job demands, job control, supervisor and coworker support) moderate this association.; Methods: A cross-sectional correlational study design using a web-based questionnaire survey was conducted among 379 Japanese working family caregivers of people with dementia (105 female, age range 20-77) in May 2016, which measured caregiver burden, work productivity, care situation, job characteristics, and demographics. Caregiver burden was designated as an independent variable and each aspect of work productivity as a dependent variable in a hierarchical multiple regression analysis, adjusting for demographics. Interaction terms between caregiver burden and each job characteristic were also included in the model.; Results: Caregiver burden was significantly and positively associated with presenteeism (β = 0.219, p < 0.001) and overall work impairment (β = 0.181, p < 0.001), while the association of caregiver burden with absenteeism was not significant (β = - 0.003, p = 0.953). Interaction effects of caregiver burden × coworker support on presenteeism (β = - 0.189, p = 0.023) and overall work impairment (β = - 0.172, p = 0.034) were significant. According to simple slope analyses, caregiver burden was greater at lower levels of coworker support compared to higher levels of coworker support for both presenteeism and overall work impairment.; Conclusions: Our study suggests that higher caregiver burden is associated with a decrease in work productivity. Additionally, coworker support appears to buffer the association of caregiver burden with presenteeism and overall work impairment among working family caregivers of people with dementia.

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Paid Family Leave: An Emerging Benefit for Employed Family Caregivers of Older Adults

As our population ages, the ability to take time off to care for an ill family member or close friend without losing income or a job is a growing social, health, and economic issue for American families. Therefore, the need for paid family leave policies for workers with caregiving responsibilities is an important topic for employers and policymakers, in the clinical care of older adults, and at kitchen tables across the United States. Despite this growing need, paid family leave is not available to most workers, and there is no national paid family leave policy. Health care and social service providers have a role in ensuring that family members of their patients with a serious health condition or disability are aware of the potential availability of paid family leave benefits in the states and businesses that provide them. Building a better system of care for older adults means changes not only in health care settings and in long-term services and supports, but in workplaces too. This article describes the challenges faced by workers with family caregiving responsibilities, explains why paid family leave matters, indicates which states have adopted these protections, and reviews research on existing paid family leave policies. Finally, actions by clinicians and other stakeholders are offered to advance awareness about paid family leave benefits, including coverage for workers with care responsibilities for older people.

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Outcomes of a Problem-Solving Medication Management Intervention for Informal Caregivers

Older adults with memory loss often require assistance from caregivers to manage their medications. This study examined the efficacy of a problem-solving-based intervention focused on caregiver medication management, problem solving, self-efficacy, and daily hassles. Caregiver health-related quality of life (HRQoL) and patient health care utilization were secondary outcomes. Totally, 83 patients (age 79.9±8.8 years) and their informal caregivers (age 66.9±12 years, female 69.9%, White 85.5%) were randomized; data collection occurred at baseline, 8, 16, and 24 weeks. Linear mixed modeling showed significant decreases in medication deficiencies which were sustained over time. No significant changes in caregiver problem solving, daily hassles, or patient health care utilization occurred between groups or over time. In addition, caregiver self-efficacy and mental HRQoL decreased in both groups. Physical HRQoL decreased in the intervention group, yet increased in the usual care group. Future research should investigate these outcomes in larger and more diverse samples.

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Effect of family intervention on family caregivers' burden, depression, anxiety and stress among relatives of depressed patients

Background: Depression is a major psychiatric disorder worldwide. It is a leading cause of individual disability and family burden worldwide. The aim of the study: the aim of this study was to investigate the effect of family intervention on caregivers' burden, depression, anxiety and stress among relatives of depressed patients. Subjects and method: A quasi-experimental design was conducted at the inpatient and outpatient Psychiatric Department Mansoura University Hospital, Egypt. Ninety five families participated in this study (n = 95). Pre-tests and post-tests (n = 95), and test 3 months after intervention were conducted on eighty six (n = 86). The caregivers were divided into ten groups, which ranged from 8 to 10 caregivers in each group; each group attended 12 sessions. A structured interview questionnaire for personal data for patients and their caregiver, Caregiver Burden scale, quality of life scale (QOL) and Depression, Anxiety and Stress Scale-21 items (DASS-21) were used to collect data. Results: The findings of the study indicate that caregivers' burden, depression, anxiety and Stress level significantly reduced, and quality of life significantly improved after implementation of family intervention. There is a negative correlation between QOL and Caregivers' burden, and their feeling of depression, anxiety and stress, while there was a positive correlation between caregivers' burden and their feeling of depression, anxiety and stress. Conclusions: Based on the current results, it can be concluded that caregivers' burden, |depression, anxiety and stress are highly prevalent among caregivers of patients with depression and significantly improved after implementation of family intervention one month after, moreover it slightly decreased three months after intervention. This conclusion leads to accept the hypothesis of the study that family interventions improve the caregivers' burden, QOL, and feelings of depression, anxiety and stress. Further research is needed to follow the intervention 6 and 12 months after family intervention.

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Effectiveness of an Educational Nursing Intervention on Caring Ability and Burden in Family Caregivers of Patients with Chronic Non-Communicable Diseases. A Preventive Randomized Controlled Clinical Trial

Objective. To evaluate the effect of the "Caring for Caregivers" program in the caring ability and burden in family caregivers of patients with chronic diseases at health care institutions. Methods. A randomized controlled clinical trial was conducted in 34 relatives of patients with chronic diseases that had cared for them for more than 3 months. Zarit scale was used to measure caregiver burden and the CAI (Caring Ability Inventory) was also used to measure caring ability. An educational intervention was applied based on the "Caring for Caregivers" strategy of the Universidad Nacional de Colombia. Results. Although both groups improved their percentage of unburdened caregivers from the first to the second assessment, the difference between the two assessments was 41.2% in the intervention group whereas it was 11.8% in the control group, being only statistically significant the difference for the intervention group. Regarding the caring ability, no significant changes were identified in both groups. Conclusion. On family caregivers, it was observed that the "Caring for Caregivers" intervention had a positive impact on decreasing burden, but not on improving the caring ability.

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A Problem-Solving Intervention for Hospice Family Caregivers: A Randomized Clinical Trial

Objectives: Family caregivers of hospice patients have multiple needs as they try to cope during a stressful time. Translatable interventions effective in improving caregiver outcomes are greatly needed. Our objective was to assess the impact of a problem-solving intervention (called Problem-Solving Intervention to Support Caregivers in End-of-Life Care Settings [PISCES]) to support hospice caregivers on caregiver quality of life and anxiety, and compare its effectiveness delivered face to face and via videoconferencing.; Design: In this 4-year randomized clinical trial, caregivers were randomly assigned to a group receiving standard care with added "friendly calls" (attention control [AC] group), a group receiving standard care and PISCES delivered face to face (F2F), or a group receiving standard care and PISCES delivered via videoconferencing (VC).; Setting: Home hospice.; Participants: A total of 514 caregivers participated (172 in AC, 171 in F2F, and 171 in VC). Caregivers were predominantly female (75%); mean age was 60.3 years.; Intervention: PISCES includes a structured curriculum delivered in three sessions and motivates caregivers to adopt a positive attitude, define problems by obtaining facts, set goals, and generate and evaluate solutions.; Measurements: Quality of life was measured by the Caregiver Quality of Life Index-Revised; anxiety was measured by the Generalized Anxiety Disorder 7-Item. Other measures included the Caregiver Reaction Assessment scale, demographic data, and an exit interview.; Results: Compared with AC, caregivers in the F2F condition had postintervention reduced anxiety (-1.31 [95% confidence interval [CI] = -2.11 to .50]; p = .004) and improved social (.57 [95% CI = .19-.95]; p = .01), financial (.57 [95% CI = .21-.93]; p = .004), and physical quality of life (.53 [95% CI = .19-.87]; p = .01). There were no differences in caregivers in the VC condition compared with the AC condition.; Conclusion: The PISCES intervention improves caregiver outcomes and is effective when delivered in person. How to integrate technology to reduce the intervention delivery cost warrants further investigation.

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Evaluation of Technology-Based Interventions for Informal Caregivers of Patients With Dementia-A Meta-Analysis of Randomized Controlled Trials

Objective: The aim of this study was to estimate the efficacy of technology-based interventions for informal caregivers of people with dementia (PWD). Methods: PubMed, PsycINFO, and Cochrane Library databases were searched in August 2018, with no restrictions in language or publication date. Two independent reviewers identified 33 eligible randomized controlled trials (RCTs) conducting a technology-based intervention for informal carers of PWD. Meta-analyses for the outcome measures caregiver depression and caregiver burden were conducted with subgroup analyses according to mode of delivery (telephone, computer/web-based, combined interventions). To assess methodologic quality, the Cochrane risk-of-bias assessment was rated. Results: Meta-analyses revealed a small but significant postintervention effect of technology-based interventions for caregiver depression and caregiver burden. Combined interventions showed the strongest effects. Conclusion: Technology-based interventions have the potential to support informal caregivers of PWD. Because of advantages such as high flexibility and availability, technology-based interventions provide a promising alternative compared with "traditional services," e.g., those for people living in rural areas. More high-quality RCTs for specific caregiver groups are needed.

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The Effectiveness of Psychoeducational Support Groups for Women With Breast Cancer and Their Caregivers: A Mixed Methods Study

Background: Previous studies on the effectiveness of psychological interventions in oncology mainly used quantitative measures and no study was conducted with regard to both caregivers and patients. Aim: This study evaluates the effectiveness of psychoeducational support groups, both for women with breast cancer, and for their informal caregivers through the use of quantitative and qualitative measures. Methods: A longitudinal design was used comparing two psychoeducational support groups with other two groups in a standard care control condition. Participants were 28 women with a diagnosis of breast cancer in the care of a hospital in Northern Italy, and 21 family caregivers. The quantitative data were collected by Cognitive Behavioral Assessment for Outcome Evaluation (CBA-OE) and the qualitative data through the use of semi-structured interviews. Results: The statistical analysis showed a significant change attributable to the psychological intervention that proves the effectiveness of such an intervention in the patients' and caregivers' group. The qualitative analysis allowed us to interpret the behavioral and psychological profile emerging from CBA-OE, by considering the subjective experience of the treatment groups. The group experience offered affective, relational and informative support, and allowed participants to create a network and to feel understood and reassured. Conclusion: The results suggest the usefulness of psychoeducational support groups for women with breast cancer and for their caregivers. The value of this kind of intervention is not only at an individual level but also at a systems level, and family involvement ensures the best positive outcomes.

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Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers

Background: Family carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services. It is increasingly likely that any help or support family carers receive will be provided by a third sector organisation on either a voluntary basis or by untrained carer support workers.; Objectives: To produce a training programme designed to equip carer support workers and volunteers with the basic skills and knowledge needed to support family carers.; Process Of Development: Participatory action research, a collaborative form of working in which those who are affected by an issue take a lead role in the research, was used. Bereaved carers acting as research partners, support workers and representatives of third sector organisations took an active part in designing, developing, piloting and refining the programme in a number of interlinked stages. During development, the programme was piloted on four occasions and evaluated by 36 trainees and 3 trainers.; Final Training Programme: The outcome of the project is an innovative, 1-day training programme, offering an introduction to supporting family carers who are looking after someone approaching the end of life. The use of participatory action research methods enabled the development of a programme that addresses support needs identified by bereaved carers and training needs identified by carer support workers.The finished programme includes all the materials necessary to run a training day for support workers and volunteers: facilitator's notes, trainee workbook, slides, promotional poster and pre-course reading for trainees. Knowledge of issues involved in end-of-life and palliative care is not required, although some experience in delivering training is advisable.; Conclusion: The programme evaluated well during development, but further research is required to examine the transfer of learning into the workplace.

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We Are Caregivers: Social Identity Is Associated with Lower Perceived Stress among Rural Informal Caregivers

Informal caregivers often experience high stress levels with little support, especially in rural settings. With a mixed-methods approach, this research explored experiences of rural informal caregivers, including how social identification as a caregiver, social interactions, and formal and informal coping support related to perceived stress. Major focus group themes (n = 8) included lacking available services, balancing challenges, unmet practical needs, and strong community identity. Survey data (n = 22) revealed that perceived coping support (e.g., having someone to turn to), social interactions, and caregiver identity (e.g., perceiving the role as important to one's self-concept) were associated with lower life upset stress, but only caregiver identity was associated with managing the personal distress and negative feelings associated with caregiving stress. Results suggest that, although available rural services may fall short, other options might alleviate caregiver stress, including facilitating access to coping support, encouraging social interactions, and enhancing caregiver social identity.

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Telephone-based aftercare groups for family carers of people with dementia: study protocol of the Talking Time - REHAB project

Background: More than one million people in Germany live with dementia. Most of these people are cared for at home in the family setting. Supporting and caring for people with dementia is time-consuming, and family carers often have high stress levels and are at an increased risk of becoming physically and mentally ill. Medical rehabilitation (rehab) helps to relieve family carers and provide them with strategies to cope with stress. The aim of this study is to improve the sustainability of a multimodal rehab program for family carers of people with dementia.; Research Question: can the effects of this rehab be maintained through telephone-based aftercare groups following the rehab program?; Methods: A prospective randomized controlled longitudinal trial is performed. The intervention group (IG) participates in telephone-based aftercare groups; the control group (CG) receives treatment as usual. For evaluation, a mixed-methods approach is used. The effects of the intervention are quantitatively evaluated by written questionnaires at four measuring points (pre- and post-rehab, as well as 6 and 12 months after the end of rehab).; Primary Outcome: participation (IMET).; Secondary Outcomes: Depressive Mood State CES-D, General Complaints SCL-90-R, Subjective Quality of Life WHOQUOL-BREF, Social Support F-SozU, performance in different areas of life, single scales, and support offers (single items). The intervention process is evaluated through qualitative interviews and focus groups with regard to the acceptance of and satisfaction with the aftercare offered; in addition, a health economic evaluation is performed using the EQ-5D questionnaire. Rehabilitants are included in the study (N = 103 each in the IG and CG) who, accompanied by their family members with dementia, participate in the rehab measure in Ratzeburg. The IG participates monthly in 6 telephone aftercare groups over a period of 6 months. Typical stress situations are discussed and worked on.; Discussion: Upon successful evaluation, the offer to participate in telephone-based aftercare groups can be firmly established in the participating rehab clinic. Through minor adjustments, the offer would also be suitable for carers of physically ill people and for non-nursing-specific rehabilitation indications.; Trial Registration: German Clinical Trials Register: DRKS00013736 , May 14, 2018.

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Brief telephone counselling is effective for caregivers who do not experience any major life events - caregiver-related outcomes of the German day-care study

Background: To date, there has been a dearth of scientifically tested, established intervention concepts focussed on supporting informal caregivers and embedded in routine health care structures. The aim of this study was to assess effects of a brief telephone intervention for caregivers of persons with cognitive impairment (PCIs) on caregivers' depressiveness and subjective burden.; Methods: A two-arm cluster-randomised controlled intervention study was carried out at 32 German day-care centres. During the six-month intervention period, informal caregivers in the intervention group (n = 205) received counselling in three phone calls focussed on stress reduction, development of self-management strategies, and how to deal with challenging behaviours. Both the control group (n = 154) and the intervention group were free to take part in any support programmes offered by the German Health Care System (TAU). Caregivers' subjective burden and depressiveness were measured with the Burden Scale for Family Caregivers - short version (BSFC-s) and the WHO-5 Well-Being Index (WHO-5). Outcomes were assessed by means of computer-assisted telephone interviews (CATIs) at baseline and at the end of the six-month intervention phase. Multiple regression analyses were used to show the influence of group allocation.; Results: After the intervention phase, group allocation was not found to significantly predict caregivers' subjective burden or depressiveness. The baseline scores (p < 0.001) were the only significant predictors of change in both outcomes. However, sensitivity analyses for caregivers who did not experience any events that they felt were major (in a negative or positive sense) during the six months (n = 271) showed that group allocation (p < 0.05) was a significant predictor of positive change in both outcomes (BSFC-s: Δ-1.3, [- 2.4, - 0.3], Cohen's d = 0.27; WHO-5: Δ1.5, [0.4, 2.7], Cohen's d = 0.26). Effect sizes were highest in the subgroup of caregivers of people with mild dementia (BSFC-s: Cohen's d = 0.43; WHO-5: Cohen's d = 0.42).; Conclusions: A "low-dose" psychoeducative telephone intervention designed to empower caregivers is effective, especially in an early stage, if the overlap between the effect of the intervention and the effect of events that are experienced as major events in the caregiver's life is considered.; Trial Registration: Identifier: ISRCTN16412551 (Registration date: 30 July 2014, registered retrospectively).

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A systematic review of cancer caregiver interventions: Appraising the potential for implementation of evidence into practice

Objective Informal caregivers provide substantial support for people living with cancer. Previous systematic reviews report on the efficacy of cancer caregiver interventions but not their potential to be implemented. The aim of this systematic review was to explore the potential for cancer caregiver interventions to be implemented into practice. Methods We searched three electronic databases to identify cancer caregiver interventions on 5 January 2018. We operationalised six implementation outcomes (acceptability, adoption, appropriateness, feasibility, fidelity, and costs) into a tool to guide data extraction. Results The search yielded 33 papers (27 papers from electronic databases and six papers from other sources) reporting on 26 studies that met review criteria. Fewer than half the studies (46%) contained evidence about the acceptability of interventions from caregivers' perspectives; only two studies (8%) included interventions developed with input from caregivers. Two studies (8%) addressed potential adoption of interventions, and no studies discussed intentions, agreement, or action to implement interventions into practice. All studies reported on intervention appropriateness by providing a rationale for the interventions. For feasibility, on average less than one‐third of caregivers who were eligible to be involved consented to participate. On fidelity, whether interventions were conducted as intended was reported in 62% of studies. Cost data were reported in terms of intervention delivery, requiring a median time commitment of staff of 180 minutes to be delivered. Conclusions Caregiver intervention studies lack components of study design and reporting that could bridge the gap between research and practice. There is enormous potential for improvements in cancer caregiver intervention study design to plan for future implementation.

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An economic evaluation of a telephone outcall intervention for informal carers of cancer patients in Australia: An assessment of costs and quality-adjusted-life-years

Objective: Carers of people with cancer provide uncompensated care that is often physically, emotionally, and financially demanding, which results in neglect of their own health. This study's objective was to conduct an economic evaluation following a randomised control trial (RCT) involving a proactive telephone outcall intervention aimed at improving health outcomes among carers of cancer patients. Methods: The trial was a single-blind, multicentre, RCT conducted across four Australian health services, comprising three outcalls from trained Cancer Council 131120 (Cancer Council telephone and information support services) nurses compared with three phone call reminders of the availability of 131120 services (control group). Outcalls consisted of telephone contacts to the caregivers initiated by the Cancer Council nurses. The primary trial outcome was reduced carer burden. Health care resource use was measured using a resource use questionnaire (RUQ), and costs were presented in 2013 $(AUS). Quality-adjusted-life-years (QALYs) were also used as health outcomes. An incremental cost-effectiveness ratio (ICER) was calculated, with bootstrapping used to quantify sampling variability. A $50 000 per QALY-gained willingness-to-pay threshold was used. Sensitivity analyses were conducted. Results: Results showed that the total mean QALYs-gained were higher (0.02 QALYs, P = 0.01) in the control group, and total mean costs were lower in the control group ($477, P < 0.001) over the trial duration. The intervention group was dominated by the control group. Results were robust to sensitivity analyses. Conclusions: Results suggest policy makers should not adopt this intervention into routine health care in its current form. Further research into the efficacy and cost-effectiveness of telephone-based interventions for carers is required. 

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Development of an mHealth application for family carers of people with dementia: A study protocol

Background: The progressive and complex nature of dementia demands carers have specific knowledge and training. However, often carers do not have adequate knowledge and skills, particularly for functional disability care. Aim: This study aims to develop and test the feasibility of an educational and supportive mHealth/smartphone application that addresses the needs of family carers of people with dementia related to functional disability of care recipients. Methods: This mixed method study consists of three phases. In phase one, an online survey and individual interviews with carers will be conducted to assess their needs related to management of functional disability and the development of an mHealth application. Additionally, experts will be consulted to identify their opinions on application development. In phase two, using information from phase one, an mHealth application will be designed and developed. In phase three, a feasibility study will be conducted with carers to identify usability, user adherence, acceptance and experiences with the application. Discussion: This study will generate new knowledge about the needs of carers related to the management of functional disability of people with dementia and the use of smartphones for health-seeking behaviours, and will develop an mHealth application for carers to address the needs related to functional disability care. Conclusion: A mixed method study was designed to develop a user-centred educational and supportive mHealth app for family carers to address needs related to the functional disability of people with dementia consisting of three phases: needs assessment, the designing of the app and a feasibility study.

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I-CoPE: A pilot study of structured supportive care delivery to people with newly diagnosed high-grade glioma and their carers

Background There is limited evidence to guide best approaches to supportive care delivery to patients with high-grade glioma. I-CoPE (Information, Coordination, Preparation and Emotional) is a structured supportive care approach for people with newly diagnosed high-grade glioma and their family carers. Delivered by a cancer care coordinator, I-CoPE consists of (1) staged information, (2) regular screening for needs, (3) communication and coordination, and (4) family carer engagement. This pilot study tested acceptability and preliminary effectiveness of I-CoPE, delivered over 3 transitions in the illness course, for people newly diagnosed with high-grade glioma and their carers. Methods I-CoPE was delivered at the identified transition times (at diagnosis, following the diagnostic hospitalization, following radiotherapy), with associated data collection (enrollment, 2 weeks, 12 weeks). Outcomes of interest included: Acceptability/feasibility (primary); quality of life; needs for support; disease-related information needs; and carer preparedness to care (secondary). Descriptive statistics were used to assess acceptability outcomes, while patient and carer outcomes were assessed using repeated measures ANOVA. Results Thirty-Two patients (53% male, mean age 60) and 31 carers (42% male) participated. I-CoPE was highly acceptable: 86% of eligible patients enrolled, and of these 88% completed the study. Following I-CoPE patients and carers reported fewer information needs (P <.001), while carers reported fewer unmet supportive care needs (P <.01) and increased preparedness to care (P =.04). Quality of life did not significantly change. Conclusion A model of supportive care delivered based upon illness transitions is feasible, acceptable, and suggests preliminary efficacy in some areas. Formal randomized studies are now required. 

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Chronic Grief Management: A Live-Streaming Video, Group-Based Intervention for Family Caregivers of Individuals With Dementia in Long-Term Care

Family caregivers of individuals with Alzheimer's disease and related dementias (ADRD) experience long-term mental health effects. Although caregivers who place relatives in long-term care (LTC) experience increased depression, anxiety, and chronic grief post-placement, interventions to improve caregivers' mental health have focused mainly on in-home care. Current researchers previously tested a group-based Chronic Grief Management Intervention (CGMI) with ADRD caregivers of individuals in LTC, with significant effects on caregiver mental health outcomes. In the current study, researchers adapted the CGMI for synchronous online video using Adobe® ConnectTM and iPads® (Chronic Grief Management—A Live-Streaming, Online Intervention [CGMI-V]). Specific aims were to test feasibility of digital delivery of the CGMI-V and explore caregivers' online group experience. Researchers assessed participants at baseline for sociodemographic information and at the end of the program with a four-item satisfaction survey and focus group. Digital delivery of the CGMI-V was feasible and caregiver satisfaction was high.

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Improving patient safety by easing caregiver burden

The physical and emotional toll of caring for someone who requires assistance moving, bathing, eating, grooming, and using the restroom increases if he or she is exhibiting signs of confusion or aggression. The literature is abundant with evidence that family caregivers are prone to anxiety and depression related to their duties. Additionally, burdened caregivers can put their patients at risk, as anxiety and depression can impact judgment. Caught in temporary situations that can seem endless, many caregivers experience mental health issues related to social isolation, financial concerns, and physical exhaustion. Here, Mathias explores the psychological impact of providing end-of-life care for a loved one and offers tools to assess and alleviate caregiver burden.

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Family Caregivers and the Decisions They Make

Kennedy talks about the importance of family caregivers. Among other things, making sure that family caregivers are prepared prior to discharge in understanding the family members diagnosis and what it means for ongoing care, how to provide care, and what changes signal the need for professional intervention.

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What do patients and family-caregivers value from hospice care? A systematic mixed studies review

Background: It is not known which attributes of care are valued the most by those who experience hospice services. Such knowledge is integral to service development as it facilitates opportunities for continuous improvement of hospice care provision. The objectives of this mixed-studies systematic review were to explore patients' and their family carer views and experiences, to determine what they valued about adult hospice care in the UK. Methods: ASSIA, PubMed, CINAHL and PsycINFO were searched from inception, up until March 2017 to identify qualitative, quantitative, and mixed-methods studies. Four additional searching techniques supplemented the main search and grey literature was included. A three-stage mixed-method systematic review was conducted with a sequential exploratory design. Thematic synthesis was used with qualitative data, followed by a narrative summary of the quantitative data. The qualitative and quantitative syntheses were then juxtaposed within a matrix to produce an overarching synthesis. Results: Thirty-four studies highlighted that what patients and carers valued was generally context specific and stemmed from an amalgamation of hospice service components, which both individually and collectively contributed to improvements in quality of life. When the syntheses of qualitative and quantitative studies were viewed in isolation, the value placed on services remained relatively consistent, with some discrepancies evident in service availability. These were commonly associated with geographical variations, as well as differences in service models and timeframes. Through an overarching synthesis of the qualitative and quantitative evidence, however, notable variations and a more nuanced account of what people valued and why were more prominent, specifically in relation to a lack of social support for carers, disparate access to essential services, the underrepresentation of patients with a non-cancer diagnosis, and the dissatisfaction with the range of services provided. Conclusion: Review findings strengthen the existing evidence base and illuminates the underpinning elements of hospice care most valued by patients and their families. With large disparities in the availability of services, however, the underrepresentation of patients with non-malignant diseases and the limited evidence base demonstrating the adequate addressment of the social needs of carers, there continues to be considerable gaps that warrants further research. 

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Good end-of-life care in nursing home according to the family carers’ perspective: A systematic review of qualitative findings

Background: Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase. Aim: To identify the elements that nursing home residents’ family carers perceive as good end-of-life care and develop a conceptual model of good end-of-life care according to the family perspective. Design: Systematic review (PROSPERO no. 95581) with meta-aggregation method. Data Sources: Five electronic databases were searched from inception between April and May 2018. Published qualitative studies (and mixed-method designs) of end-of-life care experience of nursing home family carers whose relative was dead or at the end-of-life were included. No language or temporal limits were applied. Results: In all, 18 studies met inclusion criteria. A ‘life crisis’ often resulted in a changed need of care, and the transition towards palliative care was sustained by a ‘patient-centered environment’. Family carers described good end-of-life care as providing resident basic care and spiritual support; recognizing and treating symptoms; assuring continuity in care; respecting resident’s end-of-life wishes; offering environmental, emotional and psychosocial support; keeping family informed; promoting family understanding; and establishing a partnership with family carers by involving and guiding them in a shared decision-making. These elements improved the quality of end-of-life of both residents and their family, thus suggesting a common ground between good end-of-life care and palliative care. Conclusion: The findings provide a family-driven framework to guide a sensitive and compassionate transition towards palliative care in nursing home. 

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Influences on uptake of a community occupational therapy intervention for people with dementia and their family carers

Introduction: Health policy promotes living well with dementia. Occupational therapists deliver interventions to support people with dementia and family carers to live well. This study aimed at identifying influences on uptake of a community occupational therapy intervention by people with dementia and carers, as little evidence about this topic exists. Method: Seventeen semi-structured, paired interviews with people with dementia and carers were conducted as part of the ‘Valuing Active Life in Dementia’ research programme. A secondary, qualitative analysis of these interviews explored influences on uptake of the intervention. Findings: Four main themes were identified: ‘Grabbing at straws and keen to take part’; ‘We’re trying to put a routine in’; ‘We didn’t know what to expect’, and ‘Give it a go’. Factors identified as potentially influencing uptake included whether the intervention was perceived as potentially meeting needs for support and activity, and whether participants were struggling to adjust or cope. Conclusion: Despite limited expectations or apprehension, uptake of this intervention was demonstrated. Understanding why people with dementia and carers accept intervention offers can inform what occupational therapists provide and how it is offered. Further research is required to determine the occupational therapy interventions people with dementia and carers might find supportive at different stages of the disease trajectory.

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Community-led and/or focused initiatives to support family carers within a palliative care context: An integrative review

Background: Public health approaches to palliative care prioritise community-focused initiatives to support people with palliative care needs and their families. The nature and extent of these initiatives have not previously been reported. Aim: To identify community-led and/or focused initiatives that have been developed to support family carers of people with palliative care needs and for which evaluation information is reported in the empirical literature. Design: An integrative study design was undertaken using systematic methods. Data sources: CINAHL, Medline, PsycINFO, Embase, Cochrane, Sociological Abstracts, Proquest Social Science Database, and grey literature were searched using standardised search terms. Results: Two quantitative, two qualitative and two mixed method studies were identified (n = 6). All community initiatives identified were professionally led, although three had consumer input. Most aimed to improve carer psychosocial well-being and all were reported to have been beneficial. Conclusions: This integrative review identified only six community-focused and evaluated initiatives supporting family carers in the international palliative care research literature. Further evaluation is needed. However, appropriate evaluation methods and reporting require further discussion and debate between all stakeholders. Service users and communities themselves must be central to this process.

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Acceptability of a Dyadic Tai Chi intervention for older people living with dementia and their informal carers

Exercise is effective in preventing falls among older adults. However, few studies have included people living with dementia and their carers and explored their experiences. The aim of this study is to explore what affects the acceptability of exercise interventions to better meet the needs of people with dementia and their carers as a dyad. Observations, field notes containing participant's and instructor's feedback, and focus groups with 10 dyads involved in Tai Chi classes for 3 or 4 weeks in two sites in the South of England were thematically analyzed to understand their experiences. Findings suggest that dyads' determination to achieve the benefits of Tai Chi facilitated their adherence, whereas a member of the dyad's low sense of efficacy performing the movements during classes was a barrier. Simplifying class content and enhancing the clarity of instructions for home-based practice will be key to support the design of future exercise interventions. 

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Refining a model of collaborative care for people with a diagnosis of bipolar, schizophrenia or other psychoses in England: A qualitative formative evaluation 11 Medical and Health Sciences 1117 Public Health and Health Services

Background: Many people diagnosed with schizophrenia, bipolar or other psychoses in England receive the majority of their healthcare from primary care. Primary care practitioners may not be well equipped to meet their needs and there is often poor communication with secondary care. Collaborative care is a promising alternative model but has not been trialled specifically with this service user group in England. Collaborative care for other mental health conditions has not been widely implemented despite evidence of its effectiveness. We carried out a formative evaluation of the PARTNERS model of collaborative care, with the aim of establishing barriers and facilitators to delivery, identifying implementation support requirements and testing the initial programme theory. Methods: The PARTNERS intervention was delivered on a small scale in three sites. Qualitative data was collected from primary and secondary care practitioners, service users and family carers, using semi-structured interviews, session recordings and tape-assisted recall. Deductive and inductive thematic analysis was carried out; themes were compared to the programme theory and used to inform an implementation support strategy. Results: Key components of the intervention that were not consistently delivered as intended were: interaction with primary care teams, the use of coaching, and supervision. Barriers and facilitators identified were related to service commitment, care partner skills, supervisor understanding and service user motivation. An implementation support strategy was developed, with researcher facilitation of communication and supervision and additional training for practitioners. Some components of the intervention were not experienced as intended; this appeared to reflect difficulties with operationalising the intervention. Analysis of data relating to the intended outcomes of the intervention indicated that the mechanisms proposed in the programme theory had operated as expected. Conclusions: Additional implementation support is likely to be required for the PARTNERS model to be delivered; the effectiveness of such support may be affected by practitioner and service user readiness to change. There is also a need to test the programme theory more fully. These issues will be addressed in the process evaluation of our full trial. Trial registration: ISRCTN95702682, 26 October 2017. 

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Lifeworld in co-designing with informal carers

Purpose: The purpose of this paper is to reflect on carers’ experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodological challenges and opportunities that occurred in the user group sessions conducted. Design/methodology/approach: This research adopt an explorative design studying a co-design process to develop an information and communication technology based support programme for and with CPwHF. Habermas’ concepts of lifeworld and system are used as a theoretical framework to analyse the co-design process employed in the study. Findings: Reflecting on the co-design approach adopted, the findings highlight the methodological challenges that arise with carer involvement and the possible tensions that occur between researchers’ ambitions to include users in the design process, and the goal of developing a product or service, in the different phases of the design process. Originality/value: Findings highlight that there is a tension between the system and lifeworld in the co-design process which are not totally compatible. The paper highlights that there is a need to develop flexible and reflexive human-centred design methodologies, able to meet carers’ needs and ideas, and at the same time balance this with proposed research outcomes. 

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ABC model: A tiered, integrated pathway approach to peri- and post-diagnostic support for families living with dementia (Innovative Practice)

Services for people with dementia and their families in England are commissioned with a lack of integration and an inconsistent approach creating gaps in service provision. Therefore, families affected by dementia are not receiving the appropriate care in a timely manner and often access support at crisis point. This reactive and crisis driven approach to care is costly financially and can have a negative impact and quality of life of those affected. The ABC model offers an adaptable framework that can inform service provision and improve opportunities to create seamless peri- and post-diagnosis dementia services for families affected by dementia. 

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Formal Care of the Elderly and Health Outcomes Among Adult Daughters

Health-care expenditures and the demand for caregiving are increasing concerns for policy makers. Although informal care to a certain extent may substitute for costly formal care, providing informal care may come at a cost to caregivers in terms of their own health. However, evidence of causal effects of care responsibilities on health is limited, especially for long-term outcomes. In this paper, we estimate long-term effects of a formal care expansion for the elderly on the health of their middle-aged daughters. We exploit a reform in the federal funding of formal care for Norwegian municipalities that caused a greater expansion of home care provision in municipalities that initially had lower coverage rates. We find that expanding formal care reduced sickness absence in the short run, primarily due to reduced absences related to musculoskeletal and psychological disorders. In general, we find no effects on long-term health outcomes.

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Delivering problem‐solving therapy to family caregivers of people with cancer: A feasibility study in outpatient palliative care

Objective In response to the well‐documented need for evidence‐based cancer caregiver support, we examined the feasibility of problem‐solving therapy for family caregivers of cancer patients receiving outpatient palliative care and investigated the impact of problem‐solving therapy on family caregivers' anxiety, depression, and quality of life. Methods We conducted a feasibility study of a structured problem‐solving therapy intervention delivered to family caregivers of cancer patients receiving outpatient palliative care from an academic health center in the Midwestern United States. Participants (N = 83) were randomly assigned to receive usual care or usual care plus a problem‐solving therapy intervention, which was delivered over three sessions via web‐based videoconferencing or telephone. Descriptive statistics were used to determine feasibility relative to recruitment, retention, and fidelity to core intervention components. Outcome data were analyzed using ordinary least squares multiple regression. Results Problem‐solving therapy for family caregivers of patients with cancer was found to be highly feasible in the outpatient palliative care setting. Caregivers who received problem‐solving therapy reported less anxiety than those who received only usual care (P = 0.03). No statistically significant differences were observed for caregiver depression (P = 0.07) or quality of life (P = 0.06). Conclusions Problem‐solving therapy is a feasible and promising approach to reducing cancer family caregivers' anxiety in the outpatient palliative care setting. Further testing in multiple sites is recommended.

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Caregiving benefits: Expanding the conversation beyond paid leave

More companies offer paid leave to caregivers Research from Genworth, the National Business Group on Health and MetLife all confirm that caregivers in the workplace are facing challenges ranging from absenteeism, presenteeism and emotional distress to physical health issues and financial burdens. From caring for loved ones with serious health conditions and sick children to maternity and paternity leave and even mental health days, a paid leave program is the mark of many forward-thinking organizations. [...]Bristol Myers Squibb recently demonstrated the flexibility of paid time off by extending the definition of family for their parental leave policy.

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Collaborative story production with bereaved family carers of people who died in advanced age

Purpose Is collaborative story production (CSP) a useful method to collaborate with bereaved families to record their reflections on the end of life circumstances and care of people of advanced age? The paper aims to discuss this issue. Design/methodology/approach Drawing from Te Pākeketanga, a bicultural study involving 58 bereaved Māori and non-Māori families on behalf of 52 older relatives, the authors describe the CSP method. Researchers and participants co-created personalised written stories about the older person and their end of life experiences, supported with photographs of family, friends and memorabilia. The authors aimed to uplift the status of the older person and their family by tangibly reflecting the significance and magnitude of what had been shared and to strengthen the research analysis.Findings CSP supported member checking, promoted a robust understanding of participants’ narratives and increased the trustworthiness of data and strengthened the Kaupapa Māori and social constructivist analysis. However, some participants experienced difficulty revisiting painful memories when reading their story. CSP took longer than anticipated, was labour intensive and required a highly skilled and resourced team to ensure participants benefitted. Originality/value Using the CSP method with a bicultural cohort of bereaved families who had provided care to someone over the age of 80 was very helpful in assisting the researchers to gather narrative information and present it back to participants in a story format for their comment and feedback. The method contributed a useful way to partner with bereaved family caregivers following the death of an older family member. The authors needed a way to record the participants’ narratives of the older person’s end of life circumstances and end of life care experiences. This was very important, particularly for grieving families and indigenous families who may have felt vulnerable engaging with research, and with the research processes. The approach provided a helpful and non-intrusive member-checking process. The unique bicultural study approach deliberately utilised the CSP method to assist the researchers to work safely with bereaved families as the participants reflected upon and explored not only the end of life circumstances of the older person, but they also focused on the “death” and their own bereavement experiences. CSP also provided a helpful member-checking method; the authors were working with highly sensitive information and wanted to ensure that the authors as researchers understood and interpreted the families’ narrative data correctly, according to their perspectives.

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Evaluation of an integrated service delivering post diagnostic care and support for people living with dementia and their families

Greater integration of health and social care services is considered vital to ensure sustainable long‐term quality provision for the growing numbers of people living with dementia and their families. Integration of services is at the heart of government policy in England. We evaluated a new integrated service for post diagnostic dementia care, funded as a pilot and delivered through a partnership of statutory and voluntary sector health and social care organisations. The service used an adapted Admiral Nursing service model with a workforce of Admiral Nurses (ANs) and Dementia Advisers (DAs). A mixed method approach was used to assess implementation and outcomes. It involved collection of service activity data, carer reported experience survey data, focus group discussions and interviews with the service delivery team, and the management group. Qualitative data was analysed using a framework approach. About 37.8% of the eligible population registered with the service over the 14‐month pilot period. The self‐referral route accounted for the majority of referrals, and had enabled those not currently receiving specialist dementia care to engage with the service. Carer satisfaction surveys indicated high levels of satisfaction with the service. The caseload management system offered specific benefits. Individual caseloads ensured continuity of care while the integrated structure facilitated seamless transfer between or shared working across AN and DA caseloads. The skill mix facilitated development of the DA role increasing their potential contribution to dementia care. Challenges included managing large workloads and agreeing responsibilities across the skill mix of staff. This model of fully integrated service offers a novel approach to address the problems of fragmented provision by enabling joined‐up working across health and social care.

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Supporting family carers of people with dementia

According to Alzheimers New Zealand, the number of New Zealanders with dementia is expected to exceed 170,000 by 2050.1 Dementia refers to a collection of progressive neurodegenerative illnesses, including Alzheimer's disease, vascular dementia and Lewy body type. Local NASC services assess people with dementia and their families' abilities to provide care, and help them access appropriate services such as day care or respite care.14 Other services that people with dementia and their families are referred to include Alzheimers New Zealand, Carer Support, Age Concern, regional health services for older people and mental health services for older people. [...]in the Nelson Marlborough DHB, older persons mental health service and Age Concern are some of the tertiary services that can provide reactive support when crises occur.15 About 40 per cent of people over the age of 65 in general hospitals have delirium, dementia or both.16 When nurses care for people with dementia and their carers on a general hospital ward, they have the opportunity to assess carers' stress and needs, and provide interventions.16,17 A qualitative study of carers' perspectives of acute hospitalisation of their family member with dementia found six themes that contributed to a positive hospitalisation experience.13 These included good communication, being empathetic and advocating for the carer. [...]early recognition of carer burden through nursing assessments helps prevent carer hospitalisation.

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Rob Lowe: Who Cares for the Carer? | Opinion

In January 2018, President Donald Trump signed the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act, a law that directs Secretary of Health and Human Services Alex Azar to develop and maintain a strategy to support caregivers in the next 18 months. According to the initiative, nearly a quarter of the 3,516 unpaid caregivers they surveyed in 2017 said their careers had suffered because of caring for a family member. When you get on an airplane, the crew says, "Secure your own mask first before helping others." Because without you taking care of yourself, you can't take care of anybody else.

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Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers’ experiences of specialist palliative home care teams

Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients’ and family caregivers’ experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety‐five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.

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The relation between social cohesion and the care burden of family healthcare providers

This study aimed to clarify the relationship between social cohesion and family care burden. The social capital indicators of Kondo et al. and the short version of the Zarit Care Burden Interview Scale in Japanese (J-ZBI_8) were used. Data were analyzed by multiple regression models. Seventy-one caregivers responded. Factors showing statistical significance in the multiple regression analysis included "receipt of emotional support" (p = 0.009) and "instrumental support provided" (p = 0.010). Social support was suggested to have a possible effect on the care burden of the main caregivers to relate to less burden. The gap between the original ideal loss and the social role caused by providing nursing care is likely to increase the degree of care burden.

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266User-Centered Design of a Mindfulness Application to Support Older Informal Carers

Background: Mindfulness-based interventions (MBIs) have grown in popularity in recent years and have been shown to reduce stress and increase quality of life among older informal carers. A digital application delivering MBIs has been iteratively designed based on user-centered designed principles and aims to support older informal carers to manage stress and sleep. We describe a qualitative study with older informal carers and the resulting digital application. Methods: A qualitative study with 20 older adults took place over a 2-year period. Requirements gathering consisted of focus groups, interviews, and usability testing with older adults and informal carers. A high-fidelity mock-up of an application was designed and user-testing sessions held with five participants to gauge usability and effectiveness. Results: Focus group participants felt stress reduction is a significant issue which affects overall wellbeing, with a consensus that stress can have an adverse effect on sleep. An overarching theme throughout the informal carer interviews was carer burden and the sense of being overwhelmed. The sense of constant worry was a theme that also emerged, which could be addressed by the present moment focus of mindfulness (Helmes & Ward 2015 https://doi.org/10.1080/13607863.2015.1111862, Visser et al. 2015 https://doi.org/10.1007/s12671-014-0311-5). Usability testing sessions revealed previously overlooked user experience and interface issues, including icons and data visualizations. Analyses of these user interactions and qualitative feedback allowed for further iterations in the design cycle, meeting guidelines for best practice in a user-centred design approach. Conclusion: Insights from the requirements gathering and testing sessions provided an understanding of parameters of health important to older adults, feelings towards selfmonitoring, preferences for data visualizations, and attitudes to MBIs. The resulting application has been designed for older informal carers to manage stress through MBIs as well as monitor activity and sleep through tracking, data visualizations and educational advice.

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Interventions for reducing levels of burden amongst informal carers of persons with dementia in the community. A systematic review and meta-analysis of randomised controlled trials

Objectives: Caregiver burden can lead to increased stress, depression and health difficulties for caregivers and care-recipients. This systematic review aimed to examine the published evidence, for interventions designed to reduce levels of carer burden, in those caring for a person with dementia.; Methods: Three databases were searched (Medline, PsycINFO and CINAHL) for studies reporting on randomised controlled trials of non-pharmacological interventions for dementia-related caregiver burden. Data quality checks were completed for included papers and meta-analysis was performed to estimate the efficacy of individual interventions and different categories of non-pharmacological intervention.; Results: Thirty studies were included in the analysis. Seven studies found a significant reduction in carer burden and a pooled effect found that intervening was more effective than treatment as usual (SMD = -0.18, CI = -0.30, -0.05). This result was small, but significant (p = 0.005). Multi-component interventions are more effective than other categories. High heterogeneity means that results should be interpreted with caution.; Conclusions: Interventions that significantly reduced levels of burden should be replicated on a larger scale. The relative effectiveness of interventions targeting cognitive appraisals and coping styles suggests that future interventions might be informed by models theorising the role of these processes in carer burden.

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Being a Former Carer: Impacts on Health and Well-Being

In the United Kingdom, policy has formalized the role of carers through the introduction of new rights and entitlements to support. However, this support is directed only at current carers with the needs of former carers being unacknowledged. Yet, when caregiving comes to an end, the transition to a life as a “former” carer can be challenging. This article reports findings from a small-scale qualitative study about the experiences of former carers conducted in the United Kingdom. Findings highlight the impact of caregiving on the health and well-being of former carers with feelings of loss and distress associated with the end of caregiving. The need for support in the post-caregiving phase emerges as a significant issue with former carers feeling abandoned, lacking purpose and motivation to move forward in their lives. Findings suggest that the needs of former carers are not being met. 

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Testing a pain self-management intervention by exploring reduction of analgesics' side effects in cancer outpatients and the involvement of family caregivers: a study protocol (PEINCA-FAM)

Background: Pain is one of cancer patients' most frequent and distressing symptoms; however, analgesics' side effects often increase symptom burden. Further, with the home rapidly becoming the primary cancer care setting, family caregivers (FCs) commonly play central roles in patients' pain self-management, but with little or no preparation. One US-tested intervention, the PRO-SELF© Plus Pain Control Program (PCP), designed to support cancer outpatients and their FCs in pain self-management, is currently being tested in the Swiss multi-centre PEINCA study. The current PEINCA-FAM study is a sub-study of PEINCA. The aims of PEINCA-FAM are: a) to test the efficacy of the adapted German PRO-SELF © Plus PCP to reduce side effects of analgesics; b) to enhance patients'/FCs' knowledge regarding cancer pain; and c) to explore FCs' involvement in patients' pain self-management. Methods: This mixed methods project combines a multi-centre randomized controlled clinical trial with qualitative data collection techniques and includes 210 patients recruited from three oncology outpatient clinics. FCs involved in patients' pain self-management are also invited to participate. After baseline evaluation, eligible participants are randomized to a 6-week intervention group and a control group. Both groups complete a daily pain and symptom diary. Intervention group patients/FCs receive the weekly psychoeducational PRO-SELF© Plus PCP interventions; control group patients receive usual care. After completing the six-week study procedures, a subsample of 7–10 patients/FCs per group and hospital (N = 42–60) will be interviewed regarding their pain management experiences. Data collection will take place from April 2016 until December 2018. An intent-to-treat analysis and generalized linear mixed models will be applied. Qualitative data will be analysed by using interpretive description. Quantitative and qualitative results will be combined within a mixed method matrix. Discussion: In clinical practice, specially trained oncology nurses in outpatient clinics could apply the intervention to reduce side effects and to enhance patients'/FCs' self-efficacy and pain management knowledge. Trial registration: The PEINCA study is registered in the Clinical Trials.gov site (code: NCT02713919, 08 March 2016).

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Palliative Care — Online Resources for Patients, Families, and Caregivers

The article focuses on preventing or alleviating suffering in patients with serious illness using palliative care program. It mentions about providing effective palliative care treatment for improving quality of life for the patient and to provide support for family and caregivers; and offering hospice care to the patients related to issues such as nutrition and hydration.

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Helping families and carers to support a person with a stoma and dementia

The articles discusses nurses of Great Britain's National Health Service's (NHS's) assistance to caregivers and families supporting dementia patients who had stoma surgery, including in regard to the use of distraction for people unwilling to engage in stoma care. An overview of hospitals' identification of dementia patients is provided.

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Why the caregivers of bipolar patients need to be in constant touch with a physician: A qualitative study of text messages from patient caregivers to a physician

Background: The variety of caregiver's needs of bipolar patients signifies the importance of performing dedicated interventions to help this group of caregivers based on the cultural conditions of the country in which they live; the present study therefore seeks to address this issue through a different method. Methods: The families of 28 patients with bipolar disorder type 1 who were treated for at least two months by a single psychiatrist gradually entered the study over a six-month period. They received the phone number of the psychiatrist in attendance as soon as the patient was in remission according to the same psychiatrist's interview. A total of 1908 texts were sent and received and each family sent an average of 68.14 text messages during the three years, with the minimum being 40 and the maximum 83. All the text messages were transcribed verbatim and were evaluated by three faculty members through the qualitative content analysis method. Results: In this study we found three themes and there were some codes in each theme. 1. The first theme was "Training" which the caregivers requested advice about symptoms and tests, the course of the disease, assurance, medication side-effects and their management, how to stop smoking, how to control high-risk behaviors and double checking appointments with the physician, making for a total of 1079 text messages received. 2. The second theme was "Reporting" which contained a description of emergency symptoms and requesting advice, reporting response or no response to the medications, reporting medication adherence and dosage taken. 3. The third theme: "The expression of feelings" including the expression of gratitude, saying congratulations on national and other celebrations and expressing anger and hatred. Conclusion: Overall, the caregivers of patients with bipolar disorder have many needs; meeting these needs affects the patients' outcome and the caregivers, but requires a greater attention by the healthcare team and it is necessary for these needs to be evaluated in the context of each distinct country.

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Investment in Australian mental health carer services: how much and does it reflect evidence of effectiveness?

Objective The aims of this study were to quantify Australian federal and state government expenditure on mental health carer services for 2014-15, map the types of services being provided and explore how funded service types compare with the evidence base for the outcomes of these carer services. Methods Web searches were conducted to identify in-scope mental health carer services in Australia funded by federal and state and territory governments. Funding estimates were confirmed where possible with available government and carer organisation contacts. A literature search was conducted for reviews of studies investigating mental health carer service outcomes. Results In 2014-15, the estimated Australian national, state and territory government expenditure on mental health carer services was approximately A$90.6 million. This comprised A$65.6 million in federal expenditure and A$25.0 million in state and territory expenditure. Most funding streams provided respite and psychoeducation. The literature showed positive carer outcomes for psychoeducation and intensive family interventions. Evidence was lacking for the effectiveness of respite services. Conclusions These findings suggest a mismatch between what is known about the extent to which different service types deliver positive carer outcomes and the current allocation of funds across Australia's mental health system. This study also highlights the fragmentation of the mental health carer services system, supporting the need to streamline access.

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Moving family interventions into the real world: What matters to oncology stakeholders?

Background: Family interventions targeting patients and/or informal caregivers are beneficial, but few have been integrated in oncology clinical care. Understanding diverse stakeholder perspectives may inform implementation and dissemination efforts.; Methods: We are currently conducting a randomized controlled trial of CareSTEPS, a telephone-based intervention for caregivers of advanced lung cancer patients. CareSTEPS seeks to improve caregiver and patient self-care behaviors, quality of life, and satisfaction with care. With an eye toward integrating CareSTEPS into clinical care, semi-structured interviews were conducted with 7 experts in integrated care [practice thought leaders] and 26 individuals representing different oncology stakeholder groups (i.e., potential end users of CareSTEPS including counselors, social workers, nurse specialists, and psychologists) [N = 13], decision-makers, including physicians and administrators [N = 6], and key dissemination partners, including representatives from cancer and caregiving advocacy groups [N = 7]). Questions focused on existing caregiver support services, barriers to integrating care for caregivers in routine patient care, and possible models for clinical uptake and dissemination. Interviews were transcribed and analyzed using directed content analysis.; Results: Stakeholders noted a mismatch between caregiver needs and services offered, and expressed interest in broader service offerings. Barriers for integrating caregiver support into clinical care included inadequate funding, lack of interdisciplinary training among providers, and concern that research-based interventions are often not flexible enough to roll out into clinical practice. To secure buy-in, stakeholders noted the importance of evaluating intervention cost, cost savings, and revenue generation. Possible avenues for dissemination, through bottom-up and top-down (e.g., policy change) approaches, were also discussed.; Conclusions: Findings highlight the importance of evaluating outcomes important to diverse oncology stakeholder groups to speed translation of research into practice. They also suggest that pragmatic trials are needed that allow for flexibility in the delivery of family interventions and that consider the resource limitations of clinical care.

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Information sharing across generations and environments (InfoSAGE): study design and methodology protocol

Background: Longevity creates increasing care needs for healthcare providers and family caregivers. Increasingly, the burden of care falls to one primary caregiver, increasing stress and reducing health outcomes. Additionally, little has been published on adults', over the age of 75, preferences in the development of health information sharing with family members using online platforms. This study aims to assess a novel, Internet based, family-centric communication and collaboration platform created to address the information needs of elders and their informal caregivers in a community setting.; Methods: This study is an internet-based, open prospective cohort study, enrolling dyad pairs of one adult over the age of 75 with one informal caregiver. Dyads will be offered to use the InfoSAGE online platform without prospective assignment. Participants will consent using an online process that enables participation from any location and shares important study and privacy details. The platform will enable the capture of search queries and tracking of functions such as tasks and discussions. Surveys every six months assess health status, health and social needs, and caregiver burden using validated instruments over a two-year period. We will use a mixed methods approach, utilizing qualitative survey data along with website usage analytic data.; Discussion: Analysis of the longitudinal usage and survey data will help to examine the patterns of family communication and health information seeking as the central older adult ages. We will use the study data to inform design recommendations relevant to a complex mixture of users, with special consideration to the needs of older adult users and potential physical limitations.

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146Feasibility of a Resilience-Enhancing Resource for Family Carers of People with Dementia

Background: The WHO recommends involving carers in designing support programmes for people with dementia and their family carers. Moreover, researchers need to develop empowering and inclusive models of research in dementia care. Working with a network of current and former family carers of people with dementia, we co-designed an information and support resource to enhance the resilience of family carers of people with dementia. Branded Take Care of Yourself, the support resource comprises a website containing short video testimonials of family carers of people with dementia, supplemented with written materials. Methods: We conducted a study to establish the feasibility of the resource, in terms of its acceptability and usability among family carers of people with dementia. To test the feasibility of the resource, we developed a logic model in which we established short- medium- and long-term indicators of success, to identify which aspects of the resource were most effective in enhancing family carers’ resilience. To capture these indicators, we conducted a series of workshops among a purposive sample of current and former family carers of people with dementia and other stakeholders, including carers’ advocates and healthcare and support staff. Results: We report the findings of the feasibility study, with reference to the carers’ and other users’ experiences of and responses to the resource, including their perspectives on its content, quality, relevance and capacity to enhance resilience. We present our findings using thematic headings, supplemented with data extracts that exemplify the emergent themes. Conclusion: Consistent with the principles of empowerment and inclusion in research, support resources for family carers of people with dementia need to be developed in partnership with family carers themselves. Moreover, to be effective in meeting the needs of those for whom a resource is designed, the resource content must have fidelity and resonate with users’ real-world experiences.

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Digital Technology for Caregivers of People With Psychosis: Systematic Review

Background: Psychotic disorders are severe mental health conditions that adversely affect the quality of life and life expectancy. Schizophrenia, the most common and severe form of psychosis affects 21 million people globally. Informal caregivers (families) are known to play an important role in facilitating patient recovery outcomes, although their own health and well-being could be adversely affected by the illness. The application of novel digital interventions in mental health care for patient groups is rapidly expanding; interestingly, however, far less is known about their role with family caregivers.; Objective: This study aimed to systematically identify the application of digital interventions that focus on informal caregivers of people with psychosis and describe their outcomes.; Methods: We completed a search for relevant papers in four electronic databases (EMBASE, MEDLINE, PsycINFO, and Web of Science). The search also included the Cochrane database and manual search of reference lists of relevant papers. The search was undertaken in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses reporting guidelines.; Results: The search identified 9 studies derived from 8 unique datasets. Most studies were assessments of feasibility and were undertaken in the United States. Interventions were predominately Web-based, with a focus on improving the caregivers' knowledge and understanding about psychosis.; Conclusions: This study offers preliminary support for the feasibility and acceptability of digital interventions for psychosis in informal caregiver populations. However, the findings underpin a clear need for greater development in the range of caregiver-focused digital approaches on offer and robust evaluation of their outcomes. The use of digital approaches with caregiver populations seemingly lags someway behind the significant developments observed in patient groups.

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The effects of a community mental health intervention project upon family caregivers of persons with suspected mental illness in the Chinese cultural context

Family members play an important role in caregiving with more emphasis on early intervention for people suffering from mental illness. Using both quantitative and qualitative methods, this study examines the effects of a community mental health intervention project (CoMHIP) on burdens of caregivers who have family members with suspected mental illness. Results showed that family caregivers’ burden and psychological stress level had been reduced (p < .001). The caregivers subjectively experienced a significant reduction in stress regarding the caregiving subscales, supervision, tension, worrying and urging after seeking CoMHIP service. Findings for the study have implications on social work interventions regarding family caregiving of people with suspected mental health problems.

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A cluster randomized controlled trial to test the feasibility and preliminary effectiveness of a family dementia caregiver intervention in Vietnam: The REACH VN study protocol

Background: Resources for Enhancing All Caregivers Health in the Department of Veterans Affairs (REACH VA) is an evidence-based intervention supporting family dementia caregivers that has been shown to improve caregiver outcomes for culturally diverse populations in the United States. However, this model has not been tested in low- and middle-income countries (LMICs) including Vietnam, where community-based psychosocial interventions are urgently needed. The objectives of this study are to assess the feasibility and preliminary effectiveness of a culturally adapted version of the Resources for Enhancing All Caregivers Health in Vietnam (REACH VN).; Methods: A cluster randomized controlled trial (RCT) will be conducted over a 6-month period in Soc Son district located in Hanoi. An expected sample of 10 to 12 communes, representing approximately 50 dementia primary caregivers, will be randomized to either the REACH VN intervention or an enhanced control condition. Inclusion criteria for the caregiver include age ≥18, family member who provides the most day-to-day care for person with dementia, and a total score for the brief (4 item) Zarit Burden Scale of ≥6. Over the course of 2 to 3 months, each participant in the intervention group will receive the REACH VN intervention comprised of 4 core sessions on problem solving, mood management/cognitive restructuring, stress management, and communication, and up to 2 additional sessions based on caregiver's needs. The enhanced control group will receive a single session that provides verbal and written information on dementia. Caregiver outcomes will be assessed at baseline (i.e., time of enrolment) and 3 months. The feasibility will be assessed with regard to recruitment, retention, treatment adherence, treatment fidelity, and assessment processes. For preliminary effectiveness, we will examine caregiver burden as the primary outcome and changes in caregiver depressive symptoms and in Alzheimer disease knowledge as secondary outcomes.; Discussion: This is the first study to test community-based family dementia caregiver intervention in Vietnam. Results from this study will provide the foundation for a larger effectiveness trial and broader dissemination in Vietnam and may help inform efforts to develop similar community-based family dementia caregiver support programs in other LMICs.; Trial Registration: ClinicalTrials.gov, ID: NCT03587974. 

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Comparative Effectiveness of 2 Interventions for Hispanic Caregivers of Persons with Dementia

Objectives: To compare the effectiveness of 2 caregiver interventions with known efficacy: the Resources for Enhancing Caregiver Health‐Offering Useful Treatment (REACH‐OUT) and the New York University Caregiver Intervention (NYUCI). Design: 1:1 randomized pragmatic trial. Setting: New York City. Participants: Informal Hispanic caregivers of persons with dementia (N=221; mean age 58.2, 82.8% female, 63.3% adult children, 31.7% spouses). Intervention: Participants were randomized to 6 months of NYUCI (n=110) or REACH‐OUT (n=111), balanced on characteristics at baseline. All participants were referred for social supportive services. Measurements: The primary outcomes were changes between baseline and 6 months in depressive symptoms, measured using the Geriatric Depression Scale (GDS), and caregiver burden, measured using the Zarit Caregiver Burden Scale (ZCBS). Results: There were no differences in outcomes between NYUCI and REACH‐OUT. Both interventions showed a reduction in burden (REACH‐OUT: 5.2 points, 95% confidence interval (CI)=2.2–8.1, p<.001; NYUCI: 4.6‐points, 95% CI=1.7–7.5, p=.002). There were no significant changes on the GDS. Effects for the ZCBS were significant only for spouses and older caregivers. Conclusion: Although there were no significant intervention group differences, both interventions resulted in significantly reduced burden for Hispanic caregivers at 6 months, particularly for spouses and older caregivers.

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The effects of information and communication technologies on informal caregivers of persons living with dementia: A systematic review

Introduction: Information and communication technology (ICT) has emerged as promising to support health care consumers, including informal caregivers. This systematic review seeks to evaluate the state of the science of ICT interventions on the health of informal dementia caregivers.; Methods: We searched PubMed, CINAHL, Web of Science, and PsycINFO using concepts associated with ICT, dementia, and caregiver. Studies were assessed using the Quality Assessment Tool for Quantitative Studies.; Results: We identified 657 full-text publications. After removal of duplicates and title, abstract, and full-text screening, the quality of 12 studies was assessed. Studies varied in technology, implementation, results, and intervention evaluation.; Discussion: The methodological quality of the ICT intervention studies among dementia family caregivers was moderate to strong, yet outcome measurement was not uniform. The evidence is strongest for various forms of telephone-based interventions. However, there is a need for research that includes heterogeneous participants based on gender, race, and ethnicity.;

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The Effects of the Perception of Being Recognized by Patients With Alzheimer Disease on a Caregiver's Burden and Psychophysical Health

Caring for a patient with Alzheimer disease (AD) represents a real challenge that can have considerable long-term psychological and physical consequences. The aim of this study was to evaluate the impact of the perception of being recognized on both the psychophysical health and the level of burden reported in caregivers of patients with AD. The secondary aim was to evaluate the association between the use of a home care assistance service and the burden and psychophysical health in caregivers. The Caregiver Burden Inventory (CBI), the 36-item Short-Form Health Survey (SF-36), and a visual analog scale (VAS) to evaluate the level of perception of being recognized were administered to 31 caregivers of patients with AD. Data were also collected from patients with AD using the Mini-Mental State Examination (MMSE). The level of perception of being recognized was significantly and negatively correlated with total burden ( r = -0.36; P = .045) and objective burden ( r = -0.53; P = .002). It was also significantly and positively correlated with the MMSE score ( r = 41; P = .02). Regression models showed that only the perception of being recognized, and not MMSE, significantly predicted lower caregiver objective burden scores. Furthermore, the use of a home care assistance service significantly predicted higher caregiver physical functioning. The perception of being recognized by an AD relative significantly predicted the caregiver's objective burden associated with a shortage of time. The use of a home care assistance service also resulted in a promotion in the caregiver's social functioning. Further studies are needed to confirm these results.

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Systematic Review of Caregiver and Dyad Interventions After Adult Traumatic Brain Injury

Objective To describe and synthesize the literature on adult traumatic brain injury (TBI) family caregiver and dyad intervention. TBI is a common injury that has a significant long-term impact, and is sometimes even characterized as a chronic condition. Informal (ie, unpaid) family caregivers of adults with TBI experience high rates of burnout, depression, fatigue, anxiety, lower subjective well-being, and poorer levels of physical health compared to noncaregivers. This study addresses the critical gap in the understanding of interventions designed to address the impact of TBI on adult patients and their family caregivers. Data Sources PubMed and MEDLINE. Study Selection Studies selected for review had to be written in English and be quasi-experimental or experimental in design, report on TBI caregivers, survivors with heavy involvement of caregivers, or caregiver dyads, involve moderate and severe TBI, and describe an intervention implemented during some portion of the TBI care continuum. Data Extraction The search identified 2171 articles, of which 14 met our criteria for inclusion. Of the identified studies, 10 were randomized clinical trials and 4 were nonrandomized quasi-experimental studies. A secondary search to describe studies that included individuals with other forms of acquired brain injury in addition to TBI resulted in 852 additional titles, of which 5 met our inclusion criteria. Data Synthesis Interventions that targeted the caregiver primarily were more likely to provide benefit than those that targeted caregiver/survivor dyad or the survivor only. Many of the studies were limited by poor fidelity, low sample sizes, and high risk for bias based on randomization techniques. Conclusions Future studies of TBI caregivers should enroll a more generalizable number of participants and ensure adequate fidelity to properly compare interventions.

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The development of a positive behaviour support programme for families following acquired brain injury

Background/Aims: Families require more specialised support to manage behaviours of concern following acquired brain injury within community settings. Evidence supports the involvement of family caregivers in behaviour interventions, however there are no validated behaviour support approaches for individuals with acquired brain injury emphasising family involvement. This research aims to (1) gain insight from rehabilitation professionals and family caregivers on best practice in behaviour support following acquired brain injury in community settings, and (2) obtain feedback on the proposed Family-directed Positive Behaviour Support Programme, which aims to enhance the capability of family caregivers in supporting behavioural changes in an individual following acquired brain injury. Methods: Rehabilitation professionals (n=8) and family caregivers (n=3) completed a three-round Delphi study with the aim of reaching consensus (75% agreement) regarding research objectives. Findings: All items presented regarding best practice in supporting family caregivers with behaviour support reached consensus. Results were used to refine the content and format of delivery of the Family-directed Positive Behaviour Support programme. Conclusions: Findings suggest an agreement regarding what support is needed, yet this is still not being provided. The Delphi process has made significant contribution to the Family-directed Positive Behaviour Support programme, which aims to inform a family-directed approach to behaviour support following acquired brain injury in community settings. 

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Effects of family-centered empowerment intervention on stress, anxiety, and depression among family caregivers of patients with epilepsy

Objectives Family caregivers face numerous challenges in taking care of their family members with epilepsy. The empowerment of this group of people, who can be described as forgotten patients, should always be considered through supportive interventions; therefore, this study investigated the effect of a family-centered intervention program on stress, anxiety, and depression among family caregivers of patients with epilepsy. Methods In 2017, a trial was conducted in Iran among subjects selected by the convenience sampling method and randomly assigned to two groups: intervention and control. After five sessions per week over a four-week period, the intervention- and control-group data were collected using the Depression Anxiety Stress Scale (DASS) in three stages: before, immediately after, and two months after the intervention. Data were analyzed with Statistical Package for the Social Sciences (SPSS) software using descriptive and analytical statistics, an independent t -test, and repeated measures Analysis of variance (ANOVA). Results In this study, the family caregivers included 61.3% women and 38.7% men, with a mean age of 37.5 years. The findings showed no significant differences in the mean scores of stress (p = 0.93), anxiety (p = 0.91), and depression (p = 0.56) before the interventional program between the intervention and control groups, but these differences were statistically significant in the mean score of stress (p = 0.003) in the immediately after the interventional program, whereas the mean scores of depression were not decreased significantly (p = 0.3). Two months after the interventional program the mean scores of stress (p = 0.001) and anxiety (p = 0.001) were significantly decreased in the intervention group, but the mean score of depression was not decreased significantly (p = 0.09). Conclusion The results suggested that a family-centered intervention program reduced the stress, anxiety, and depression of caregivers because of feasibility, simplicity, and utility of intervention. This program was focused on psychological issues of caregivers, and an emphasis on their empowerment helped them in managing their problems in the caregiving situation and achieved greater psychological potency in the caring process. 

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'Being with' or 'doing for'? How the role of an end-of-life volunteer befriender can impact patient wellbeing: interviews from a multiple qualitative case study (ELSA)

Purpose: To explore the perspectives of people anticipated to be in their last year of life, family carers, volunteers and staff on the impacts of receiving a volunteer-provided befriending service. Patient participants received up to 12 weeks of a volunteer-provided befriending intervention. Typically, this involved one visit per week from a trained volunteer. Such services complement usual care and are hoped to enhance quality of life. Methods: Multiple case study design (n = 8). Cases were end-of-life befriending services in home and community settings including UK-based hospices (n = 6), an acute hospital (n = 1) and a charity providing support to those with substance abuse issues (n = 1). Data collection incorporated qualitative thematic interviews, observation and documentary analysis. Framework analysis facilitated within and across case pattern matching. Results: Eighty-four people participated across eight sites (cases), including patients (n = 23), carers (n = 3), volunteers (n = 24) and staff (n = 34). Interview data are reported here. Two main forms of input were described-'being there' and 'doing for'. 'Being there' encapsulated the importance of companionship and the relational dynamic between volunteer and patient. 'Doing for' described the process of meeting social needs such as being able to leave the house with the volunteer. These had impacts on wellbeing with people describing feeling less lonely, isolated, depressed and/or anxious. Conclusion: Impacts from volunteer befriending or neighbour services may be achieved through volunteers taking a more practical/goal-based orientation to their role and/or taking a more relational and emotional orientation. Training of volunteers must equip them to be aware of these differing elements of the role and sensitive to when they may create most impact.Trial Registration: ISRCTN12929812.

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Quality of life in HIV-infected Chinese women and their family caregivers: an intervention study

China is experiencing a rapid increase in the number of HIV-infected women. In this study, we describe the development and preliminary evaluation of an intervention tailored for Chinese HIV-infected women and caregivers to improve their self- and family management, with goals of enhancing their physical quality of life (QOL) and decreasing their depressive symptomatology. Forty-one HIV-infected women and their caregivers were recruited from two premier Chinese hospitals from July 2014 through March 2016. Participants were randomized to either the control or intervention arm for the Self- and Family Management Intervention (SAFMI). Each study dyad in the intervention arm received three counseling sessions with a nurse interventionist. At baseline, immediate post-intervention (month 1) and follow-up (month 3), the participants were assessed by a self-reported survey. Generalized Hierarchical Linear Modeling was used to evaluate the efficacy of the intervention. Chinese HIV-infected women in the intervention arm had significantly higher probability of higher physical QOL at month 1 and lower probability of clinically meaningful depressive symptomatology at month 3 compared with women in the control arm. In contrast, the effects of the intervention were less salient for caregivers. This study represents one of the first in China to include family caregivers in HIV management. Feasibility and acceptability were high, in that family members were willing to join the study, learn about HIV, and practice new skills to support the HIV-infected women in their lives. A larger trial is needed to fully evaluate this intervention which shows promising preliminary effects in promoting physical QOL and decreasing depressive symptomatology among Chinese HIV-infected women.

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Measuring caregiver activation to identify coaching and support needs: Extending MYLOH to advanced chronic illness

Introduction: Family and friends of seriously ill patients are key partners in providing support and health care at home, managing relationships with clinicians, and navigating complex health care systems. Becoming a knowledgeable, confident, and effective caregiver is a developmental process we term 'caregiver activation' and could be facilitated by clinicians equipped with suitable tools. Managing Your Loved One’s Health (MYLOH) is a new tool to identify gaps in caregivers' knowledge, skills, and access to clinical and personal support. Created in partnership with caregivers and clinicians, MYLOH items reflect the essential dimensions of caregiving and can be used to tailor caregiver coaching to domains of greatest need. In this study, we extend MYLOH's initial focus on dementia care to caregivers of patients with other chronic life-limiting illnesses. Methods: MYLOH was completed by primary caregivers (n = 190) of people with a range of advanced chronic illnesses enrolled in the LifeCourse study, an innovative, whole-person approach to health management. Item relevance and responses were compared by group across MYLOH items and domains using z-tests for equality of proportions. Results: All MYLOH items were relevant to caregiving for all types of chronic illness; only 13% of caregivers answered “not my responsibility” to any question. MYLOH identified caregiving struggles across patient diagnosis groups with a few, disease-specific ‘hotspots’. Overall, 64% of caregivers scored low in activation on at least one healthcare management task, especially getting enough help with caregiving, managing everyday caregiving tasks, understanding/managing medications, and knowing how to respond to rapid changes in care recipients' health status. No difficulty was unique to a specific type of care recipient illness. Conclusions: MYLOH has potential as a tool for identifying caregiver coaching and support needs in managing a range of serious chronic illnesses. Caregiving difficulties endorsed by over 20% of caregivers should be core components of chronic illness management programs regardless of disease focus, with disease-specific tailoring as required. MYLOH may be useful in evaluating caregiver interventions and health systems’ performance in integrating caregivers into the care management of patients with complex life-limiting illness. 

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Enabling Social Change with Immigrant and Refugee Caregivers: Beyond Dualistic Difference to Intersectionality

A personal narrative is presented which explores the author's experience of participating in a case study of his work for an immigrant and refugee women's health organization in Australia, to deliver multilingual health education and peer support to informal family caregivers in Melbourne, Victoria.

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A prompt and practical on-site support programme for family caregivers of persons with dementia: a preliminary uncontrolled interventional study

Despite the abundance of randomized clinical trial interventions for family caregivers (FCs) who look after persons with dementia, the extent to which these findings can be effectively implemented in a real‐world clinical setting is questionable. Indeed, a prompt and practical support programme for real clinical settings would benefit FCs, especially given the long hours that they spend caregiving, but few studies have investigated easily implemented support programmes for FCs.

Therefore, the objectives of this study were two‐fold: (i) to explore the possibility of nurses providing prompt and practical support to ‘high‐risk’ FCs who require some assistance on days when they visit a memory clinic; and (ii) to investigate whether such prompt albeit brief support would reduce the extent of subjective burden among FCs.

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Implications of the use of migrant care work and web-based services on family caregivers' health

This article illustrates the implications of two recent trends on family carers' health: the employment of home-based migrant care workers; and the provision of web-based supports. The main factors traditionally associated with carers' health are used to analyse the results of a six-country study via a multilevel linear regression. Attention will be dedicated to the role of migrant care workers, who are often hired by private households to provide eldercare. Finally, web-based services for carers will be investigated by considering InformCare, a recently implemented European platform tested on a sample of carers from three countries (Germany, Italy and Sweden).

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Better Support for Carer-Employees in Canada: The Development of Standardised Guidelines for The Workplace

In 2012, it was estimated that more than 5.6 million Canadian employees (35% of the workforce) had adult/elder care responsibilities (Fast et al, 2014). Lack of workplace support leads to consequences such as: carer-employees leaving the workforce/missing work; premature retirement; reduced productivity; health problems; and increased costs to employers (Peters and Wilson, 2017). In 2016, a partnership of committed stakeholders set out to develop a bilingual Canadian Caregiver-Friendly Workplace Standard and Implementation Guide. It is a gender-sensitive, accessible guide for employers and human resource professionals and is suitable for use in a wide range of workplaces.

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'Special Mothers' in Ireland: Gender, Identity and The Social Construction of Caring for a Relative With an Intellectual Disability

Gender balance in caring is heavily skewed towards women providing the majority of care. This is particularly evident in literature relating to intellectual disability. Using the platforms of mothering and disability to examine the literature, this article sheds light on the cultural norms and societal discourses that influence 'who cares' for children and adults with disabilities. It highlights that 'who cares' is often a socially constructed ideology that results in a reconstructed identity for women. The impact on identity is discussed and suggestions are made regarding how discourse, policy and advocacy can support this cohort of carers.

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Making a world of difference for carers: the Pathways for Carers project

Local government, service providers and community members are working together to make a difference in the lives of carers and those they care for in a community in Australia. Maroondah City Council is located 25 km east of Melbourne, in the state of Victoria, at the foot of Mount Dandenong. Maroondah covers an area of 61 km2 and has a population of about 112,300 people. The council has been working with carers in their community on a 'Pathways for Carers' project, with one of the outcomes being the installation of a seat in recognition of the role that carers play in the community.

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Supporting carers in a remote region of Quebec, Canada: how much space for social innovation?

This research moves from the general hypothesis that assistance provided to a person needing support, and the effort needed to articulate work and care may, under certain conditions, become a factor in carers' inequality and vulnerability. The article presents the results of qualitative research conducted in Quebec, Canada, with carers of older people who also have full-time paid employment in the labour market, and on professionals providing these carers with services. It considers how the services offered to carers have been implemented and how they can affect carers' daily lives.

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Global conversations about care (conference review of the Global Carework Summit, 1-3 June 2017, Lowell, Massachusetts, USA)

The Global Carework Summit, organised by the Carework Network and hosted by the University of Massachusetts Lowell’s Center on Women and Work, brought together more than 150 attendees from 25 countries at the University of Massachusetts Lowell (UMass Lowell) in the USA during 1–3 June 2017. The Carework Network, formed almost 20 years ago by a small group of sociologists studying care, is an all-volunteer, international organisation of researchers, policymakers and advocates involved in various domains of care work. Although it is primarily based in the social sciences, it welcomes members from all academic disciplines and advocacy organisations with an interest in the study of care and care work. 

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Take care: How to be a great employer for working carers by David Grayson

It is well understood in Grayson’s book that the programmatic advice promised by its title stands or falls on another question being satisfactorily answered: why be a great employer for working carers? This is duly addressed right at the beginning. The book is divided into three sections: ‘Why care for carers?’, which discusses current economic and demographic trends, and makes the business case for supporting working carers; ‘Seven steps to being a good employer for working carers’, which is the central, and most concrete, programmatic section, and the one most directly addressed to employers; and ‘Building a movement’, which presents further strategies for building networks that adequately support carers in employment, and suggests that creating a society that recognises, values and facilitates the work of caring alongside (and outside) paid employment is the best and most sustainable way of ensuring that carers are supported.

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Weathering the perfect storm: facing the challenge of maintaining gains for carers against a background of shrinking resources in one area of England

These are not easy times for carers in England. While English legislation and government policy are more carer-friendly than ever before, resources are under increasing pressure from both the exploding ‘demographic time-bomb’ and ‘austerity’. This has followed the global financial crash of 2008, subjecting the whole of the public sector to significant cuts. [...] If access to formal care has proportionately reduced, we must drive additional value from a more integrated voluntary and statutory sector ‘system’. Networking, via HertsHelp, Carers in Hertfordshire and Community Navigators, can prevent confusion and duplication (for carers and professionals). 

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Practitioners' understanding of barriers to accessing specialist support by family carers of people with dementia in distress

Distressing symptoms in dementia are hard to manage for many family carers. This article explores practitioners' perceptions of the barriers to accessing skilled behaviour management support encountered by carers. A survey of cases referred to the English National Health Service (<i>n</i> = 5,360) was followed by in-depth group discussions and practitioner interviews. Data revealed that practitioners focused on care home residents or older people with mental health problems other than dementia, rather than community-dwelling people with dementia and families. Barriers to access included misperceptions about the nature of distressing behaviour affecting carers and structural limitations in the capacity of specialist services to respond to carers.

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The business case for employers supporting carers: reflecting on a UK model

Recruiting, retaining and returning carers to the workplace have already been identified as major economic and social issues in the UK. They are likely to become even more important as a consequence of demographic and economic pressures on families and employers (HM Government et al, 2013). This article sets out the current and future context regarding working carers, as well as the business response in terms of policy and practice, highlighting what has been achieved and what has yet to be addressed. It focuses specifically on the work of Employers for Carers (EfC), a membership forum of UK employers committed to supporting carers.

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InformCare: the European information hub on family care

An increasing amount of research in Europe – and beyond – has focused on the development of innovative solutions for providing support services to family carers of frail older people. This is especially the case in terms of web-based programmes. [...] There is clearly a role for well-designed and robustly supported web-based support platforms like InformCare in helping to sustain carers, deliver policy aims and ensure carer access to information, advice and support.

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'Enabling carers to care': making the case for a European Union action plan on carers

Research has identified that approximately 80% of care across the European Union (EU) is provided by families (spouses, parents and children), neighbours and friends (Hoffmann and Rodrigues, 2010). Even in countries with a well-developed supply of formal long-term care, the number of ‘informal’ carers is estimated to be at least twice as large as the formal care workforce. ‘Informal’ care provision is under pressure ... [...] The proposed EU ‘action plan on carers’ could help to inform national agendas to better address challenges relating to carers and families, facilitate and share good practice, raise the profile of carers, and support carers and promote their health and well-being across Europe.

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The Dementia Friends initiative - supporting people with dementia and their carers: reflections from Japan

Globally, an estimated 46.8 million people are living with dementia (ADI, 2015). The figure for Japan is 5 million; this represents 15% of all those aged 65 years and over (MHLW, 2015). With no cure and few effective treatments, policy developments increasingly emphasise ‘living well’ with the condition within supportive families and friendly communities (DH, 2009, 2012a, 2012b; WHO and ADI, 2012). [...] Although evidence to support the positive impact of involving people with dementia in the Dementia Friends initiative is limited, the need to extend its ambitions to do so underpins the principle ‘Nothing about us, without us’, campaigned for by the JDWG and other dementia groups and activists nationally and internationally (Dementia Alliance International, 2015; Swaffer, 2015). 

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Collateral damage: Australian carers' services caught between aged care and disability care reforms

In Australia, 2.7 million family and friend carers care for people with disabling conditions (including mental health conditions), who are terminally ill and/or who are elderly and frail. It is no surprise that those carers who provide the most care often experience multiple disadvantages, including constraints on their ability to work and accompanying financial stress, social isolation, and high levels of disability, ill health and stress [...] The question remains, however: in the context of increasing fiscal constraint and the diversion of funds into the NDIS, exactly how much will be left to support the proposed integrated carer support system? Additionally, if this development does not materialise, what future is there for dedicated support for Australia’s carers?

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The Taiwanese Association of Family Caregivers: transformation in the long-term care debate for carers

Accepting political appointment from the government is a double-edged sword for an advocacy group, which could mean a chance to influence policies or conflicts with other advocacy groups. The Taiwanese Association of Family Caregivers (TAFC) went through such a process of transformation when it was appointed as a member of a formal committee set up by the Taiwanese government in 2009 in order to develop and implement a long term care insurance scheme. We named this process TAFC's awakening because this opportunity served as a catalyst for TAFC to confirm its identity as a representative of carers, speaking solely from the carer's perspective.

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Mastering the Art of Collaboration: Supporting Family Caregivers of Mental Health Patients by Service Providers in Iran

Responsive support systems, designed and promoted by policy makers, are critical in supporting family caregivers. The purpose of this study was to explore viewpoints of service providers in supporting family caregivers of mental health patients in Iran. In this qualitative study, a purposive sample of 29 service providers and policy makers consented to participate in semi-structured interviews. Data were analyzed through qualitative content analysis and three main categories and seven sub-categories were identified. The main categories were: interpersonal collaboration, intra-organization collaboration and inter-sectorial collaboration. A common theme in this study was that service providers play a key role in coordinating responsive support services for Iranian family caregivers of mental health patients across all levels. The increasing complexity of the health care system and resource limitations have created complex problems, which require the use of participatory approaches by the various specialties, disciplines and departments to provide complementary services and mutual support. This approach is the best way of ensuring that service users receive the most relevant services from the right service providers in the right place as and when needed. 

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Improving Coping Styles in Family Caregivers of Psychiatric Inpatients Using Planned Behavior Problem-Solving Training

Background: The consequences and high costs of psychiatric disorders impact family caregivers greatly. Health services should identify and provide accessible support programs to facilitate effective caregiver coping.; Purpose: The aim of this study was to determine the effectiveness of a theory-of-planned-behavior-based problem-solving training program on the coping styles of family caregivers of psychiatric inpatients.; Methods: In this two-group, randomized control trial, 72 family caregivers were randomly assigned to either a control group receiving standard care or an intervention group receiving a training program (eight sessions over 4 weeks). Demographic information was recorded at baseline, and the Coping Inventory for Stressful Situations was administered to both groups at baseline, immediately postintervention, and 1-month follow-up.; Results: Immediately after the intervention, the intervention group earned significantly higher task-oriented coping style scores (mean difference = 5.03, p = .015) than the control group, but no significant difference was detected between the two groups for either emotion- or avoidance-oriented coping style scores. At 1-month follow-up, the intervention group earned significantly higher scores than the control group for task-oriented (mean difference = 8.56, p < .001) and emotion-oriented (mean difference = 7.14, p = .002) coping styles. No improvement in avoidance-oriented coping style at the postintervention or follow-up time points was detected.; Conclusions: Implementation by nurses and other health professionals of problem-solving training programs that are based on the theory of planned behavior is recommended to strengthen the use of task- and emotion-oriented approaches that help family caregivers of psychiatric patients better cope with stress.

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Effectiveness of psychosocial interventions in reducing grief experienced by family carers of people with dementia: A systematic review

Background Family carers of people living and dying with dementia experience grief. The prevalence, predictors and associated factors of grief in this population have been identified, and psychosocial interventions to decrease grief symptoms have been implemented. However, the effect of psychosocial interventions on family carers’ grief, loss or bereavement has not been examined. Objective To synthesize the existing evidence regarding the impact of psychosocial interventions to assist adjustment to grief, pre- and post-bereavement, for family carers of people with dementia. Inclusion criteria Types of participants Family carers of older persons with dementia (>65 years). Types of interventions Psychosocial interventions in health and social care facilities, and community settings designed to assist family carers adjust to grief during the dementia trajectory and/or following death. Comparisons No treatment, standard care or treatment as usual, or an alternative intervention. Types of studies Experimental and epidemiological study designs. Outcomes Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments. Search strategy A three-step strategy sought to identify both published and unpublished studies from 1995. Methodological quality Assessed by two independent reviewers using standardized critical appraisal tools from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). Data extraction The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently. Data synthesis Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures. Results Data were extracted from three studies. Study designs were a randomized controlled trial; a pre-test, multiple posttest quasi-experimental; and a single group, repeated measures. The interventions were multi-component, had durations of nine to 26 weeks and were delivered while care recipients were alive. All studies were undertaken in the United States. There were 327 family carers, of which 197 received a psychosocial intervention. Family carers were predominantly female (84.7%), Caucasian (73.4%) and caring for their spouse (44.3%). All care recipients had dementia; 68.5% had Alzheimer’s disease. Two studies measured anticipatory grief, and the third study reported normal and complicated grief. Moderate benefits to anticipatory grief were evident upon completion of the “Easing the Way” intervention (effect size -0.43, P = 0.03). After controlling for research design and control variables, for every hour increase in the interventions focusing on family carers’ cognitive skills, there were associated decreases in carers’ normal grief (parameter estimate [PE]= -0.81, P = 0.02) and complicated grief (PE=-0.87, P = 0.03). For every hour increase in the interventions focusing on carer behavior, there was an associated decrease in carers’ complicated grief (PE = -1.32, P = 0.04). For every hour increase in the interventions focusing on care recipient behavior, there was an associated decrease in carers’ complicated grief (PE = -2.91, P = 0.04). Conclusion There is little evidence upon which to base practice with regard to interventions to reduce any aspects of grief. Findings suggest that different pre-death interventions might be warranted depending upon a family carer’s unique clinical presentation and combination of risk factors. Cognitive skills training provided while the care recipient is alive may positively impact normal and complicated grief following the death of the care recipient. When the cognitive skills training is provided in conjunction with behaviorally oriented interventions that improve the wellbeing of the carer and care recipient, carers’ complicated grief symptoms may be reduced. 

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Fulfilling the psychological and information need of the family members of critically ill patients using interactive mobile technology: A randomised controlled trial

Background Intensive care nurses may have an important role in empowering families by providing psychological support and fulfilling the family's pivotal need for information. Aim To determine whether ‘education of families by tab’ about the patient’s condition was more associated with improved anxiety, stress, and depression levels than the ‘education of families by routine’. Research design A randomized control trial of 74 main family caregivers (intervention: 39; control: 35). Setting An adult intensive care unit. Main outcome measures Depression Anxiety Stress Scale, and Communication and Physical Comfort Scale. Results Although information need satisfaction was not significantly different between intervention and control groups, the former reported significantly better depression score on Depression Anxiety Stress Scale comparing to the control group (p<0.01;η2=0.09) with a medium effect size. Reduction of anxiety in the intervention group were clinically significant. Conclusion The results suggest that use of ‘education of family by tab’ is promising for intensive care nurses to provide psychological support for family members. More studies are needed to investigate this aspect of family care for better psychological support and information need satisfaction that contributes to the evidence-based practice of intensive care nursing.

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Updated meta-review of evidence on support for carers

BACKGROUND: Policy and research interest in carers continues to grow. A previous meta-review, published in 2010, by Parker et al. (Parker G, Arksey H, Harden M. 'Meta-review of international evidence on interventions to support carers.' York: Social Policy Research Unit, University of York; 2010) found little compelling evidence of effectiveness about specific interventions and costs. OBJECTIVE: To update what is known about effective interventions to support carers of ill, disabled or older adults. DESIGN: Rapid meta-review. SETTING: Any relevant to the UK health and social care system. PARTICIPANTS: Carers (who provide support on an unpaid basis) of adults who are ill, disabled or older. INTERVENTIONS: Any intervention primarily aimed at carers. MAIN OUTCOME MEASURES: Any direct outcome for carers. DATA SOURCES: Database searches (including Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, MEDLINE, Applied Social Sciences Index and Abstracts and Social Care Online) for systematic reviews published from January 2009 to 2016. REVIEW METHODS: We used EndNote X7.4 (Thomson Reuters, CA, USA) to screen titles and abstracts. Final decisions on the inclusion of papers were made by two reviewers independently, using a Microsoft Excel 2013 spreadsheet (Microsoft Corporation, Redmond, WA, USA). We carried out a narrative synthesis structured by patient condition and by seven outcomes of interest. We assessed the quality of the included systematic reviews using established criteria. We invited a user group of carers to give their views on the overall findings of our review. RESULTS: Sixty-one systematic reviews were included (27 of high quality, 25 of medium quality and nine of low quality). Patterns in the literature were similar to those in earlier work. The quality of reviews had improved, but primary studies remained limited in quality and quantity. Of the high-quality reviews, 14 focused on carers of people with dementia, four focused on carers of those with cancer, four focused on carers of people with stroke, three focused on carers of those at the end of life with various conditions and two focused on carers of people with mental health problems. Multicomponent interventions featured prominently, emphasising psychosocial or psychoeducational content, education and training. Multiple outcomes were explored, primarily in mental health, burden and stress, and well-being or quality of life. Negative effects following respite care were unsupported by our user group. As with earlier work, we found little evidence on intervention cost-effectiveness. No differences in review topics were found across high-, medium- and low-quality reviews. LIMITATIONS: The nature of meta-reviews precludes definitive conclusions about intervention effectiveness, for whom and why. Many of the included reviews were small in size and authors generally relied on small numbers of studies to underpin their conclusions. The meta-review was restricted to English-language publications. Short timescales prevented any investigation of the overlap of primary studies, and growth in the evidence base since the original meta-review meant that post-protocol decisions were necessary. CONCLUSIONS: There is no 'one size fits all' intervention to support carers. Potential exists for effective support in specific groups of carers. This includes shared learning, cognitive reframing, meditation and computer-delivered psychosocial support for carers of people with dementia, and psychosocial interventions, art therapy and counselling for carers of people with cancer. Counselling may also help carers of people with stroke. The effectiveness of respite care remains a paradox, given the apparent conflict between the empirical evidence and the views of carers. FUTURE WORK:  More good-quality, theory-based, primary research is warranted. Evidence is needed on the differential impact of interventions for various types of carers (including young carers and carers from minority groups), and on the effectiveness of constituent parts in multicomponent programmes. Further research triangulating qualitative and quantitative evidence on respite care is urgently required. The overlap of primary studies was not formally investigated in our review, and this warrants future evaluation. STUDY REGISTRATION: This study is registered as PROSPERO CRD42016033367. FUNDING: The National Institute for Health Research Health Services and Delivery Research programme.

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Extra care: viable for couples living with dementia?

PURPOSE: The perspectives of people with dementia and their care partners regarding "extra care" housing are currently unknown. The purpose of this paper is to report findings of a consultation study exploring the perceived barriers and facilitators of a relocation to extra care housing, from the perspective of people living with dementia, and their care partners. DESIGN/METHOOLOGY/APPROACH: Fieldwork consisted of paired or 1-1 interviews and small focus groups with potential users of an alternative model of extra care support for people living with dementia in the South of England. The consultation took place between June and August 2013. The interviews and focus groups were audio recorded, transcribed verbatim. The transcripts were analysed thematically. FINDINGS: Benefits of extra care were identified as the opportunity for couples to remain living together for longer, creating a supportive, dementia-friendly community, and a reduction in the strain experienced by the care partners. Barriers centred on a sense of loss, stress and uncertainty. Living and caring at home was perceived as preferable to shared care. RESEARCH LIMITATIONS/IMPLICATIONS: The findings presented here have limited generalisability for two reasons. First, the shared care approach consulted on was very specific. Second, the participants form a purposive sample and as such are not representative of a wider population. Despite best intentions, the voice of people with dementia, are underreported in this consultation. Only one person with early on-set dementia was interviewed and the remaining two people with dementia were interviewed alongside their care partner. PRACTICAL IMPLICATIONS: The findings cast doubt on the viability of extra care facilities, designed for couples living with dementia, if extra care continues to be conceptualised and marketed as a preventative lifestyle choice. The findings indicate the value of consulting with people with dementia, and their care partners, when designing new forms of housing with care specifically for people living with dementia. SOCIAL IMPLICATIONS: The findings of this consultation exemplify the wish of couples living with dementia to remain together, in what they perceive to be "home", for as long as possible. Couples living with dementia are therefore unlikely to wish to move into an extra care facility as a lifestyle choice option, early into their journey with dementia. This raises questions about the suitability of extra care, as a form of housing with care, for couples living with dementia. ORIGINALITY/VALUE: This paper contributes to the body of literature, exploring the feasibility of new and innovative alternative care and housing options, for people with dementia. This paper is one of the first to explore extra care as a housing and social care option for couples with dementia. 

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Communication Empowerment Framework: An integrative framework to support effective communication and interaction between carers and people living with dementia

Objectives: To demonstrate the power of integrating three theoretical perspectives (Mentalization Theory, Perceptual Control Theory and the Communicative Impact model), which jointly illuminate the communication challenges and opportunities faced by family carers of people with dementia. To point the way to how this framework informs the design and delivery of carer communication and interaction training. Method: Conceptual synthesis based on a narrative review of relevant literature, supported by examples of family carers. Results: We use the conceptual models to show how the capacity to mentalize (“holding mind in mind”) offers a greater sense of control over internal and external conflicts, with the result that they can be deescalated in pursuit of mutual goals. Conclusions: The integrative conceptual framework presented here highlights specific psychological and relational mechanisms that can be targeted through carer training to enhance communication with a person living with dementia. 

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Disseminating START: training clinical psychologists and admiral nurses as trainers in a psychosocial intervention for carers of people with dementia’s depressive and anxiety symptoms

OBJECTIVES: To put into practice and to evaluate an initial dissemination programme for the Strategies for Relatives (START), a clinically and cost-effective manualised intervention for family carers of people with dementia. SETTING: We offered three-hour 'train-the-trainer' sessions through the British Psychological Society and Dementia UK. PARTICIPANTS: Clinical psychologists and admiral nurses across the UK. PRIMARY AND SECONDARY OUTCOME MEASURES: After the training session, attendees completed an evaluation. Attendees were asked how they had implemented START six and twelve months later, and to participate in telephone interviews about their experiences of what helps or hinders implementation oneyear after training. RESULTS: We trained 134 clinical psychologists and 39 admiral nurses through 14 training sessions between October 2014 and September 2015 in nine UK locations and made materials available online. The 40 survey respondents had trained 75 other staff. By this time, 136 carers had received START across eleven service areas. Findings from 13 qualitative interviews indicated that some clinical psychologists had begun to implement START, facilitated by buy-in from colleagues, existing skills in delivering this type of intervention, availability of other staff to deliver the intervention and support from the research team. Admiral nurses did not supervise other staff and were unable to cascade the intervention. Where START has not been used, common barriers included lack of staff to deliver the intervention and family carer support not being a service priority. Participants wanted the training to be longer. CONCLUSIONS: We trained clinical psychologists and admiral nurses to deliver and implement START locally. Results from survey respondents show that it was cascaded further and used in practice in some areas, but we do not know whether START was implemented by non-respondents. Future dissemination requires management buy-in, availability of practitioners and supervisors and consideration of other ways of delivery. 

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Digital support platform: a qualitative research study investigating the feasibility of an internet-based, postdiagnostic support platform for families living with dementia

OBJECTIVES: To establish the feasibility of the Digital Support Platform (DSP), an internet-based, postdiagnostic tool designed for families living with a diagnosis of dementia. DESIGN: Qualitative methods using normalisation process theory as an analysis framework for semistructured interview transcriptions. SETTING: A community care setting in the South-East Scotland. PARTICIPANTS: We interviewed ten dyads of people with Alzheimer's, vascular or mixed dementia (PWD), and their family carers, who had been given and had used the DSP for at least twomonths. RESULTS: Our analysis revealed that the DSP was predominantly understood and used by the carers rather than PWD, and was used alongside tools and methods they already used to care for their relative. The DSP was interpreted as a tool that may be of benefit to those experiencing later stages of dementia or with physical care needs. Carers stated that the DSP may be of benefit in the future, reflecting a disinclination to prepare for or anticipate for future needs, rather than focus on those needs present at the time of distribution. PWD spoke positively about an interest in learning to use technology more effectively and enjoyed having their own tablet devices. CONCLUSIONS: The DSP was not wholly appropriate for families living with dementia in its early stages. The views of carers confirmed that postdiagnostic support was valued, but emphasised the importance of tailoring this support to the exact needs and current arrangements of families. There may be a benefit to introducing, encouraging, providing and teaching internet-enabled technology to those PWD who do not currently have access. Training should be provided when introducing new technology to PWD. 

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Characteristics of the Family Caregivers Who Did Not Benefit From a Successful Psychoeducational Group Intervention During Palliative Cancer Care: A Prospective Correlational Study

Background: Although there has been a steady increase in intervention studies aimed toward supporting family caregivers in palliative cancer care, they often report modest effect sizes and there is a lack of knowledge about possible barriers to intervention effectiveness. Objective: The aim of this study is to explore the characteristics of family caregivers who did not benefit from a successful psychoeducational group intervention compared with the characteristics of those who did. Intervention/Methods: A psychoeducational intervention for family caregivers was delivered at 10 palliative settings in Sweden. Questionnaires were used to collect data at baseline and following the intervention. The Preparedness for Caregiving Scale was the main outcome for the study and was used to decide whether or not the family caregiver had benefited from the intervention (Preparedness for Caregiving Scale difference score = 0 vs = 1). Results: A total of 82 family caregivers completed the intervention and follow-up. Caregivers who did not benefit from the intervention had significantly higher ratings of their preparedness and competence for caregiving and their health at baseline compared with the group who benefited. They also experienced lower levels of environmental burden and a trend toward fewer symptoms of depression. Conclusions: Family caregivers who did not benefit from the intervention tended to be less vulnerable at baseline. Hence, the potential to improve their ratings was smaller than for the group who did benefit. Implications for Practice: Determining family caregivers in cancer and palliative care who are more likely to benefit from an intervention needs to be explored further in research.

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Families’ experiences of involvement in care planning in mental health services: an integrative literature review

Introduction Mental health service policy stipulates that family carers be involved in care planning. Aim To identify families’ experiences of care planning involvement in adult mental health services. Method An integrative review where electronic databases and grey literature were searched for papers published between 01 January 2005 and 10 February 2016. Results Fifteen papers met the inclusion criteria. Thematic analysis generated three themes: (1) families’ experience of collaboration, (2) families’ perceptions of professionals and (3) families’ impressions of the care planning process. Collaborative decision-making is not regularly experienced by families with an ‘us’ and ‘them’ divide, perpetuated by a lack of communication, confidentiality constraints and a claim of ‘insider knowledge’ of service users. When involved, families perceive care planning to be uncoordinated and that their lived experiences are not always appreciated. Discussion Families need to be valued, empowered and engaged in care planning and the partnership distance be addressed. Accommodating the views of family, service user and professionals is preferable but not always possible. Our findings suggest that the key element for professionals is to value all ‘insider knowledge’ where possible. Implications for Practice Services should develop written information on confidentiality for families and facilitate open communication concerning their involvement in care planning. 

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A retrospective study of a multicomponent rehabilitation programme for community-dwelling persons with dementia and their caregivers

INTRODUCTION: This study determined whether the multicomponent rehabilitation programme of a memory clinic had positive outcomes on ameliorating everyday functioning, quality of life, mood and behavioural disturbances of persons with dementia and reducing distress and burden of caregivers. METHOD: A retrospective pre-test-post-test study without control group was conducted on the first cohort of persons with dementia (n=30) and their caregivers (n=30), who participated in a programme lasting for a maximum of 1 year with 25 1-hour counselling sessions. The assessment contained an evaluation of everyday functioning in basic, instrumental and advanced activities of daily living, cognition, mood, emotional and behavioural disturbances, quality of life and caregiver burden. RESULTS: Eight participants dropped out prematurely. For persons with dementia (n=22), participating in the programme did not improve everyday functioning and cognition but ameliorated quality of life significantly (Z=-2.7, p=0.006, 95 per cent CI (.003-.005)) and stabilized mood, emotional and behavioural disturbances for 60 per cent or more of them. For caregivers (n=22), the mild to moderate burden of care remained stable or got better for 63.6 per cent of the caregivers. CONCLUSION: This programme appears to be promising and valuable, and might reduce institutionalization rates. Future explorations are recommended to research how participants evolve and to investigate which participants responded in a positive way. 

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The Roles of Telehealth Tools in Supporting Family Caregivers: Current Evidence, Opportunities, and Limitations

Family caregivers need more information and training on caregiving as well as supportive tools to facilitate stress management and enhance their coping skills. In addition, family caregivers need social support and practical assistance. Telehealth tools, broadly defined as technology-based tools that bridge geographic distance, can be a promising method to deliver interventions designed for family caregivers and enhance access to resources and support. Telehealth technologies are especially important for caregivers living in rural areas or providing remote caregiving.

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CareACT - internet-based intervention for enhancing the psychological well-being of elderly caregivers – a study protocol of a controlled trial

Background: The rapid increase in the number of elderly family caregivers underlines the need for new support systems. Internet-delivered psychological interventions are a potential approach, as they are easy to access for family caregivers who are often homebound with their care recipient. This study examines the relative effectiveness of an internet-based acceptance and commitment therapy (ACT) intervention or a standardized institutional rehabilitation program, first, in reducing depressive symptoms, and second, in improving the well-being and quality of life of elderly family caregivers compared to a control group receiving support from voluntary family caregiver associations. Methods: 156 family caregivers aged 60 or more are studied in a quasi-experimental study design that compares three groups of family caregivers (Group 1; n = 65: a guided 12-week web-based intervention; Group 2, n = 52: a standardized institutional rehabilitation program in a rehabilitation center; Group 3, n = 39: support provided by voluntary caregiver associations). Data collection is performed at three time-points: pre-measurement and at 4 months and 10 months thereafter. Caregivers’ depressive symptoms as a primary outcome, and perceived burden, anxiety, quality of life, sense of coherence, psychological flexibility, thought suppression, and personality as secondary outcomes are measured using validated self-report questionnaires. Physical performance and user experiences are also investigated. Between-group differences in the effects of the interventions are examined using multiple-group modeling techniques, and effect-size calculations. Discussion: The study will compare the effectiveness of a novel web-based program in reducing depressive symptoms and improving the psychological well-being of elderly family caregivers, or a standardized institutional rehabilitation program representing usual care and a control group receiving support offered by voluntary caregiver associations. The results will expand the knowledge base of clinicians and provide evidence on effective strategies to improve the mental health and overall quality of life of elderly family caregivers. Trial registration: The study was retrospectively registered in www.clinicaltrials.gov (ClinicalTrials.gov Identifier: NCT03391596 on January 4, 2018.

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Effectiveness and usability of a web-based mindfulness intervention for caregivers of people with mental or somatic illness. A randomized controlled trial

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Approximately 42.1 million family caregivers provided care to an adult with limitations in daily activities at any given point in time in the US in 2009 (Feinberg et al., 2011).  ... Tailored online interventions that incorporate behavior change techniques such as stress management can have positive effects on caregivers' psychological well-being (Guay et al., 2017). Web-based mindfulness interventions (MBI)2 show promising results with beneficial health effects for healthy and clinical samples (de Vibe et al., 2012). A feasibility study and randomized controlled trial of the current online MBI showed positive significant results for families living with MI with enhanced levels of mindfulness and self-compassion, and decreased levels of caregiver burden and perceived stress (Stjernswärd and Hansson, 2016a; Stjernswärd and Hansson, 2017), combined with good usability and subjective value when using the program (Stjernswärd and Hansson, 2016b). Usability refers to the extent to which a specific user can use a specific product to reach specific goals, with purposefulness, effectiveness, and satisfaction, in a given context (ISO, 1998). Ease of access and flexibility of use were strong motivators for use (Stjernswärd and Hansson, 2016b). More studies are called for to verify the intervention's effectiveness for extended groups of caregivers. ...The current effectiveness study was designed as a randomized controlled trial with an experimental group and a wait-list control group (WLC), with measurements at baseline (T1), post intervention (T2) and at a 3-month follow-up (T3) on primary and secondary outcomes, and usability, in order to explore the effectiveness of the web-based mindfulness program in supporting caregivers to cope with their situation. 

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Caregivers’ experiences of a home support program after the hospital discharge of an older family member: a qualitative analysis

The ageing global population has seen increasing numbers of older people living with chronic health problems, declining function, and frailty. As older people seek to live out their years at home, family members, friends and neighbours (informal caregivers) are increasingly relied upon for support. Moreover, pressured health systems and shorter hospital length of stay mean that informal caregivers can find themselves supporting the older person who is still unwell after discharge. The Further Enabling Care at Home (FECH) program was developed as a nursing outreach intervention designed to systematically address support needs of family caregivers of older people after hospital discharge to sustain their home-based caregiving. The objective of this study was to explore the experiences of informal caregivers who participated in the FECH program after an older family member’s discharge from hospital.

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Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study

Background: Unpaid carers are the mainstay of support for people with dementia. Admiral Nursing (AN) is the only specialist nursing service that specifically focuses on supporting such carers, but evidence of its effectiveness, costs and relationships with other health and social care services is limited. This project aimed to address this gap and explore the feasibility of a full-scale formal evaluation. Objectives: To explore the relationships between characteristics of carers and people with dementia, service type and input and outcomes; to develop and test data collection methods for subsequent economic evaluation; to explore the effect of AN on outcomes and costs, compared with usual care; to explore the perceived system-wide impact of specialist support for carers of people with dementia, compared with usual care; and to implement new data collection methods in AN, which could also be used by other services, to facilitate evaluation. Design: A mixed-methods study, using secondary analysis of an administrative data set, and primary (cross-sectional) quantitative and qualitative data collection. Setting: Qualitative research with carers in four areas of England; a survey of carers in 32 local authority areas (16 with and 16 without AN); and qualitative interviews with professionals in four areas. Participants: Thirty-five carers of people with dementia and 20 professionals were interviewed qualitatively; 346 carers completed in-scope questionnaires (46% through AN services and 54% from matched non-AN areas). Interventions: Specialist nursing support for carers of people with dementia (with AN as an exemplar) compared with usual care. Main outcome measures: The Adult Social Care Outcomes Toolkit for Carers; the EuroQol-5 Dimensions, five-level version; and the Caregiver Self-Efficacy for Managing Dementia Scale. Data sources: Dementia UK’s AN administrative data set. Results: Admiral Nurses are successfully targeting the most complex cases. They work predominantly with older carers who have the main responsibility for the person with dementia, who are heavily involved in caring activity and who may be at risk. Three outcome areas that are important to carers of people with dementia and are potentially affected by receiving support are (1) carer self-efficacy, (2) carer quality of life (3) and carer mental and physical health. The carers in the survey receiving support from AN were older, were more heavily involved in caring and had poorer outcomes than carers not in receipt of such support. When these differences were controlled for, carers supported by AN had better outcomes, although the differences did not reach statistical significance. Health and social care costs were similar in both groups. The perceived system-wide impact of services, such as AN, is not well understood by professional stakeholders. Limitations: Challenges were experienced in identifying similar carers in areas with or without an AN service and in the cross-sectional nature of the work. Conclusions: Specialist nursing support to carers of people with dementia may enable them to continue providing care to the end or very close to the end of the dementia journey. The outcomes for such carers may be no different from, or even slightly better than, those of similar carers without this support, although the costs to health and social care services are the same in each case. Future work: Future research could investigate the impact of specialist support for carers on admission to long-term care. There is also a need for more work to encourage routine use of the selected outcome measures in dementia service delivery. Funding: The National Institute for Health Research Health Services and Delivery Research programme.

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A virtual reality intervention to improve the understanding and empathy for people with dementia in informal caregivers: results of a pilot study

Objective: Informal caregivers often experience psychological distress due to the changing functioning of the person with dementia they care for. Improved understanding of the person with dementia reduces psychological distress. To enhance understanding and empathy in caregivers, an innovative technology virtual reality intervention Through the D'mentia Lens (TDL) was developed to experience dementia, consisting of a virtual reality simulation movie and e-course. A pilot study of TDL was conducted. Methods: A pre-test–post-test design was used. Informal caregivers filled out questionnaires assessing person-centeredness, empathy, perceived pressure from informal care, perceived competence and quality of the relationship. At post-test, additional questions about TDL's feasibility were asked. Results: Thirty-five caregivers completed the pre-test and post-test. Most participants were satisfied with TDL and stated that TDL gave more insight in the perception of the person with dementia. The simulation movie was graded 8.03 out of 10 and the e-course 7.66. Participants significantly improved in empathy, confidence in caring for the person with dementia, and positive interactions with the person with dementia. Conclusion: TDL is feasible for informal caregivers and seems to lead to understanding of and insight in the experience of people with dementia. Therefore, TDL could support informal caregivers in their caregiving role.

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Family caregiver use and value of support services in the VA Program of Comprehensive Assistance for Family Caregivers

Context: The US Congress in 2010 established the Program of Comprehensive Assistance for Family Caregivers (PCAFC) in the Department of Veterans Affairs’ (VA) healthcare system, expanding services for family caregivers of eligible veterans with injuries sustained or aggravated in the line of duty on or after 11 September 2001. The program includes a Caregiver Support Coordinator, stipends for caregivers, education/training, and additional services. Objective: The primary goal of this study was to examine the types of services that family caregivers of veterans use and value, how services are used and any limitations family caregivers’ experienced. Given that few interventions assess caregiver satisfaction with services, there is a gap in the existing literature addressing these outcomes. Methods: We assessed how caregivers use and value services with a national, web-based survey (N=1,407 caregivers) and semi-structured phone interviews (N=50 caregivers). Findings: Caregivers rated all services as helpful and especially valued financial support to be with the veteran, training in skills for symptom management, and assistance with navigating the healthcare system. A majority reported more confidence in caregiving, knowing about resources for caregiving and feeling better prepared to support the veteran’s progress and healthcare engagement. However, only a minority reported awareness of the full range of PCAFC services. Limitations: There was a low response rate to the survey, which may have implications for generalisability to the whole population of caregivers accessing PCAFC. Additionally, we rely on self-report rather than objective measures of service use and outcomes. Implications: This is the first in-depth examination of experiences of caregivers of using the innovative PCAFC model of support. It acknowledges the important role of caregivers in health and long-term (social) care delivery and can be used to inform development of strategies outside the VA healthcare system to recognise caregivers. Findings suggest that a system-wide program to effectively include caregivers as part of the care team should include mechanisms to help connect caregivers with an array of resources, options from which to find those which best fit their personal needs and preferences.

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Caregiver Appraisal Model: understanding and treating behaviours that challenge

Practice example of a model developed to support carers in understanding and dealing with challenging behaviours. The Caregiver appraisal model is a prospective model of caregiver stress which has been developed by Northumberland County Behaviour Support Service. The model was developed from work with seven family caregivers over 12 months and provides a framework for managing their distress based on their appraisals of the situations confronting them. It is a cognitive behavioural model. The article describes how the model was developed, how it works and points of practice. Interventions directed at the person with dementia need to address unmet need. Interventions focusing on the caregiver cover three areas: psychoeducation, behavioural interventions and cognitive interventions. The authors conclude that the approach has been positively received by carers, although the sample size of cases is currently small and wider testing is required to validate its efficacy.

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Indicators to estimate the appropriateness of activating interventions for people living with dementia and for their informal caregivers

Objectives: Dyadic activating interventions support both people with dementia and their informal caregivers to maintain activities. For a person-cantered approach referrers need insight in how specific interventions might meet individual needs, characteristics, and preferences of a dyad. This study aimed to develop a set of indicators for three psychosocial dyadic, activating interventions. Method: This study used the ‘RAND Appropriateness Method’ directed at agreement on indicators within a panel of experts. Qualitative research had identified 31 relevant conceptual indicators. A panel of 12 experts in dementia care rated the extent to which these indicators are recognizable in their clinical practice. Indicators with median ratings in the top third segment of the nine-point-scale were considered recognizable. Results: 18/31 conceptual indicators (58%) were found recognizable in 75%–90% of the panelists’ clients. Although consensus on the recognisability of some indicators about the need or preference for physical and social activities was lacking, the respondents nevertheless recommended including these in regular assessments. Other indicators were judged too difficult to recognize in clinical practice. Conclusion: The selected indicators offer guidance to referrers on what intervention(s) to choose, and discuss the appropriateness in a shared decision-making process, thus contributing to a person-cantered approach.

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Dementia caregivers’ coping with pre-death grief: effects of a CBT-based intervention

Objectives: Pre-death grief plays a significant role in dementia caregiving, and has adverse impacts on caregivers. It was the purpose of the present study to examine whether a cognitive-behavioural intervention including a grief intervention module could increase caregivers’ coping with pre-death grief and whether these effects could be maintained as of a six-month follow-up assessment. Method: In a randomized-controlled trial examining the effectiveness of a cognitive-behavioural intervention, 273 caregivers were allocated to either an intervention or control group. Intervention group participants received 12 therapy sessions over six months; all participants completed a measure of pre-death grief. The analysis was conducted using latent change models. In the first model, study group was included as a predictor of change in pre-death grief; subsequent models also included care situation and sociodemographic variables. Results: The burden due to pre-death grief was reduced for intervention but not control group participants at the time of the six-month follow-up assessment (Cohen's d = −0.361). When controlling for changes in the care situation and sociodemographic variables, the treatment effect was also found in the assessment completed post intervention (Cohen's d = −0.248). Conclusion: Results indicate that a cognitive-behavioural intervention including grief-specific strategies can successfully foster caregivers’ coping with loss and reduce burden of pre-death grief.

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Dealing with daily challenges in dementia (deal-id study): process evaluation of the experience sampling method intervention ‘Partner in Sight’ for spousal caregivers of people with dementia

Objectives: This study describes the process evaluation of the experience sampling method (ESM) intervention ‘Partner in Sight’ for spousal caregivers of people with dementia. The aim was to determine internal and external validity of the intervention and provide information for future implementation in clinical practice. Method: Qualitative and quantitative data on sampling quality (recruitment and randomization, reach) and intervention quality (relevance and feasibility, adherence to protocol) were evaluated using descriptive statistics and conventional content analysis. Results: The participation rate included 31.4%. Due to recruitment difficulties and time constraints the original goal to include 90 caregivers was not met. The intervention was largely performed according to protocol and well received by the participants. Overall, the ESM-derived feedback was considered supportive and increased participants’ awareness of their feelings and behaviour. A large variance was found in the extent to which caregivers applied the feedback into their daily lives. The importance of the personal coach to provide face-to-face feedback and stimulate caregivers to implement new insights into their daily lives was emphasized. Suggestions for improvement were to reduce the time intensity of the programme, to better tailor the programme content to one's personal situation, and to improve the ESM device. Conclusion: Although recruitment barriers were encountered, results indicate that future implementation of the ESM intervention ‘Partner in Sight’ is likely to be feasible in regular health care. If the intervention turns out to be (cost-) effective, a fine-tuned version of the programme could be a valuable addition to the current health care system.

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Which interventions work for dementia family carers?: An updated systematic review of randomized controlled trials of carer interventions

Objective: The aim of this study was to update the literature on interventions for carers of people with dementia published between 2006 and 2016 and evaluate the efficacy of psychoeducational programs and psychotherapeutic interventions on key mental health outcomes (depression, anxiety, burden, and quality of life). Methods: A meta-analysis was carried out of randomized controlled trials of carer interventions using MEDLINE, PsycINFO, Scopus, and Cochrane Central Register of Controlled Trials. Results: The majority of studies were conducted in Western and Southern Europe or the United States and recruited carers of people with Alzheimer's disease or dementia grouped as a whole. The most commonly used outcome measures were depression and burden across studies. The updated evidence suggested that psychoeducation-skill building interventions delivered face-to-face can better impact on burden. Psychotherapeutic interventions underpinned by Cognitive Behavior Therapy (CBT) models demonstrated strong empirical support for treating anxiety and depression and these effects were not affected by the mode of delivery (i.e. face-to-face vs. technology). A modern CBT approach, Acceptance and Commitment Therapy (ACT), seemed to be particularly beneficial for carers experiencing high levels of anxiety. Conclusions: Future research needs to explore the efficacy of interventions on multiple clinical outcomes and which combination of interventions (components) would have the most significant effects when using CBT. The generalization of treatment effects in different countries and carers of different types of dementia also need to be addressed. More research is needed to test the efficacy of modern forms of CBT, such as ACT.

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Internet-based interventions aimed at supporting family caregivers of people with dementia: systematic review

Background: Caring for someone with dementia is one of the most challenging caring roles. The need for support for family caregivers has been recognized for some time but is often still lacking. With an aging population, demand on health and social care services is growing, and the population is increasingly looking to the internet for information and support. Objective: In this review, we aimed to (1) identify the key components of existing internet-based interventions designed to support family caregivers of people with dementia, (2) develop an understanding of which components are most valued by caregivers, and (3) consider the evidence of effectiveness of internet-based interventions designed to support family caregivers of people with dementia. Methods: We conducted a systematic search of online databases in April 2018. We searched reference lists and tracked citations. All study designs were included. We adopted a narrative synthesis approach with thematic analysis and tabulation as tools. Results: We identified 2325 studies, of which we included 40. The interventions varied in the number and types of components, duration and dose, and outcomes used to measure effectiveness. The interventions focused on (1) contact with health or social care providers, (2) peer interaction, (3) provision of information, (4) decision support, and (5) psychological support. The overall quality of the studies was low, making interpretation and generalizability of the effectiveness findings difficult. However, most studies suggested that interventions may be beneficial to family caregiver well-being, including positive impacts on depression, anxiety, and burden. Particular benefit came from psychological support provided online, where several small randomized controlled trials suggested improvements in caregiver mental health. Provision of information online was most beneficial when tailored specifically for the individual and used as part of a multicomponent intervention. Peer support provided in online groups was appreciated by most participants and showed positive effects on stress. Finally, online contact with a professional was appreciated by caregivers, who valued easy access to personalized practical advice and emotional support, leading to a reduction in burden and strain. Conclusions: Although mixed, the results indicate a positive response for the use of internet-based interventions by caregivers. More high-quality studies are required to identify the effectiveness of internet interventions aimed at supporting family caregivers, with particular focus on meeting the needs of caregivers during the different stages of dementia.

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The carers' covenant

Based on the findings from research, this report makes recommendations provide better support for carers. The 12 policy recommendations cover five key themes of financial assistance, employment, identification and support, support networks and technology. Together, the policies together form a covenant for carers. The research looked at who informal carers are and the amount of care they provide, explored the experience of informal carers through two focus groups, and looked at the support available for carers internationally. The research found that the number of informal carers and the amount of care they provide has increased in recent years; that carers are often extremely stretched and overworked as a result of their responsibilities; and that the UK lags behind eight other countries examined for their support for carers - Australia, Austria, Belgium, Denmark, Finland, Germany, Italy and Japan. It makes recommendations which aim to deliver greater financial security for informal carers, give them a better work/life balance, help ensure that carers are better identified, improve carers' access to peer support, and ensure that better use is made of the potential of technology to support carers. The recommendations include the introduction of a new Universal Carer’s Income for all carers providing more than 35 hours a week.

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Intergenerational flows of support between parents and adult children in Britain

Understanding patterns of intergenerational support is critical within the context of demographic change, such as changing family structures and population ageing. Existing research has focused on intergenerational support at a given time in the individuals' lifecourse, e.g. from adult children towards older parents and vice versa; however, few studies have focused on the dynamic nature of such support. Analysing data from the 1958 National Child Development Study, this paper investigates the extent to which the receipt of parental help earlier in the lifecourse affects the chances of adult children reciprocating with support towards their parents later in life. The findings show that three-quarters of mid-life adults had received some support from their parents earlier in life, and at age 50 more than half were providing care to their parents. Patterns of support received and provided across the lifecourse differ markedly by gender, with sons being more likely to have received help with finances earlier in the lifecourse, and daughters with child care. The results highlight that care provision towards parents was associated with support receipt earlier in life. However, the degree of reciprocity varies according to the type of care provided by children. Such findings have implications for informal care provision by adult children towards future cohorts of older people, and by extension, the organisation of social care.

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Updated meta-review of evidence on support for carers

Objective: To update a 2010 meta-review of systematic reviews of effective interventions to support carers of ill, disabled, or older adults. This article reports on the most promising interventions based on the best available evidence. Methods: Rapid meta-review of systematic reviews published from January 2009 to 2016. Results: Sixty-one systematic reviews were included (27 high quality, 25 medium quality, and nine low quality). The quality of reviews has improved since the original review, but primary studies remain limited in quality and quantity. Fourteen high quality reviews focused on carers of people with dementia, four on carers of those with cancer, four on carers of people with stroke, three on carers of those at the end of life with various conditions, and two on carers of people with mental health problems. Multicomponent interventions featured prominently, emphasizing psychosocial or psychoeducational content, education and training. Improved outcomes for carers were reported for mental health, burden and stress, and wellbeing or quality of life. Negative effects were reported in reviews of respite care. As with earlier work, there was little robust evidence on the cost-effectiveness of reviewed interventions. Conclusions: There is no ‘one size fits all’ intervention to support carers. There is potential for effective support in specific groups of carers, such as shared learning, cognitive reframing, meditation, and computer-delivered psychosocial support for carers of people with dementia. For carers of people with cancer, effective support may include psychosocial interventions, art therapy, and counselling. Carers of people with stroke may also benefit from counselling. More good quality, theory-based, primary research is needed.

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Barriers to receipt of social care services for working carers and the people they care for in times of austerity

Reconciliation of unpaid care and employment is an increasingly important societal, economic and policy issue, both in the UK and internationally. Previous research shows the effectiveness of formal social care services in enabling carers to remain in employment. Using quantitative and qualitative data collected from carers and the person they care for in 2013 and 2015, during a period of cuts to adult social care in England, we explore barriers experienced to receipt of social care services. The main barriers to receipt of services identified in our study were availability, characteristics of services such as quality, and attitudes of carer and care-recipient to receiving services. These barriers have particular implications for carers' ability to reconcile care and employment.

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Spouse carers: the importance of motivation

Family carers are a crucial resource in the care and support of people with dementia, but their motivations for caring can make the difference between success and failure. The author discusses his study of support workers' views on the way motivations can change and undermine carers' health.

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Cognitive behavioral therapies for informal caregivers of patients with cancer and cancer survivors: a systematic review and meta-analysis

Objective: Informal caregivers (ICs) of patients with cancer and cancer survivors report a number of psychological and physical complaints because of the burden associated with providing care. Given the documented effect of Cognitive Behavioral Therapy (CBT) on ICs' common psychological complaints, such as anxiety and depression, the objective was to conduct a meta-analysis on the effect of CBTs for adult ICs. Methods: A literature search was conducted in order to identify all intervention studies on adult ICs that employed at least one therapeutic component defined as a CBT component. Results: Literature searches revealed 36 unique records with sufficient data. These studies were subjected to meta-analyses using random effects models. A small, statistically significant effect of CBTs (Hedge's g?=?0.08, p?=?0.014) was revealed, which disappeared when randomized controlled trials were evaluated alone (g?=?0.04, p?=?0.200). A number of variables were explored as moderators. Only the percentage of female participants was positively associated with the effect size. Conclusions: Based on the negligible effect of CBTs across outcomes, future studies should consider moving beyond traditional CBT methods as these do not appear efficacious. It is suggested that future interventions orient towards advances in the basic affective sciences and derived therapies in order to better understand and treat the emotional struggles experienced by ICs. References

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Carers of people affected by cancer and other long-term conditions at end of life: A qualitative study of providing a bespoke package of support in a rural setting

Background: A UK charity, Macmillan Cancer Support has funded a local intervention, whereby carers of people affected by cancer and other long-term conditions at end of life are offered a bespoke package of support. Aim: This short report describes the qualitative experiences of carers in receipt of the intervention. Design: Qualitative research utilising in-depth interviews. Discussions were digitally recorded and transcribed verbatim. Data were analysed using thematic analysis. Setting/participants: Participants were carers (n = 10) in receipt of the intervention. Interviews were conducted between August and September 2014 in Lincolnshire (England). Results: Five themes from the interviews were identified: (1) Awareness and advertising, (2) focus of support on the carer, (3) modes of communication, (4) personal attributes and skills of the support worker (5) streamlining and signposting. Conclusion: The intervention was successful within a social care setting. The participants had no overtly negative opinions on the service in its current format and all held it in high regard. Carers felt a sense of reassurance from having background support and maintained that their situation would have been worse had this support not been there.

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Correlates of caregiver participation in a brief, community-based dementia care management program

Purpose of the Study: The evidence base for dementia care management interventions for informal caregivers (CGs) is strong, yet enrolment and sustained engagement in academic and community-based research trials is low. This study sought to examine rates and correlates of participation in a community-based, telephone-delivered dementia care management programme designed to address logistic and practical barriers to participation in CG trials and services. Design and Methods: Participants included 290 CGs of older, community-dwelling, low-income care recipients (CRs) who met criteria for enrolment in a collaborative dementia care management programme that provides assessment, psychosocial support and education, and connection to community resources via telephone. Cross-sectional analyses examined the association between CG-related (e.g., financial status, relationship to CR, caregiving burden) and CR-related (e.g., functional limitations, symptom severity) factors and CG enrolment and engagement. Results: The majority of CGs were non-Hispanic White, female, financially stable, and adult children of the CRs. Over half of CGs lived with the CR and provided 20 or more hours of care per week. Roughly half of CGs refused care management services. Adjusted logistic regression models revealed that perceived caregiving burden and financial status were related to initial enrolment and engagement in services once enrolled, respectively. Implications: A significant proportion of CGs refuse free, convenient, evidence-based dementia care management services, underscoring the need for further examination of correlates of programme acceptance. Nonetheless, community-based programmes that address barriers may improve enrolment and engagement rates among CGs, including those who are especially vulnerable to negative CG and CR outcomes.

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Acceptance of Global Positioning System (GPS) technology among dementia clients and family caregivers

The purpose of this study was to examine the acceptance of Global Positioning System (GPS) used to help people with dementia, who are at risk for wandering in their communities. The authors used a mixed methods research approach that included use logs, pre and post paper-based questionnaires, and focus groups. Forty-five client-caregiver pairs (dyads) were included to use one of the GPS devices for an average of 5.8 months over a 1-year period. GPS acceptance was high; dyads were likely to continue using the GPS. According to the participants, the GPS provided caregivers peace of mind and reduced anxiety in dyads when clients got lost.

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Is it time to create a new nurse role dedicated to helping carers?

Informal carers play a vital role in enabling people with ongoing support needs to be cared for at home, but this has a negative impact on carers' own health and wellbeing. Although community nurses are well placed to identify and support carers, falling numbers of district nurses and the increasing needs of an ageing population mean they have limited time and so focus on patients. This article proposes the creation of a 'carer support nurse' role entirely dedicated to supporting carers.

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Carers, along with patients, should be at the heart of care

Croft appreciates that while caring is a rewarding experience, the responsibility of supporting others can take its toll: indeed, people who provide substantial care are at 50% greater risk of experiencing mental health problems themselves. The burden of caring can be objective and subjective. For carers to fulfil their roles and feel supported doing so, it is essential for nurses to be empathetic and compassionate, and provide information, as well as offering a carer's assessment. Designing services in partnership with patients and carers is at the heart of her aspirations for a service that meets people's needs.

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Peer support for carers of people with dementia

Purpose: The purpose of this paper is to describe the development of Compass workers: a commissioned peer support model to support those caring for someone with dementia. Design/methodology/approach: The paper offers a descriptive summary of how Compass workers came to be and is informed by consultations with key stakeholders and a service evaluation encompassing both quantitative and qualitative aspects. Findings: The findings suggest that it is possible to make use of a peer support model to support those caring for someone with dementia in the context of support being provided to the cared for by statutory services. Both quantitative and qualitative data supported improvements in the quality of life for carers. Originality/value: Both health and social care are facing increasing pressures. This paper offers a positive approach to addressing these pressures utilising a peer support model to support carers that may be of value to others facing similar challenges.

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Information and communication technology-mediated support for working carers of older family members: an integrative literature review

How best to support working carers is being paid increased attention across Europe and internationally. This article examines a largely unexplored area within the empirical literature, namely, information and communication technology-mediated support for working carers of older people. Using an integrative review methodology to draw on both quantitative and qualitative data, 14 studies were identified. Themes included making work–life balance easier, reducing the burden of caregiving and promoting well-being. Factors to consider in the design, implementation and evaluation of innovative support solutions for working carers are put forward. However, a lack of longitudinal studies and biased samples warrants further investigation.

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When looking after a loved-one is too much: caring for carers

For community nurses, the first step in ensuring a carer's wellbeing is to be mindful of not adding to the person's burden themselves. To create and maintain safe and effective care for patients relies on collaboration between nurses and the families and carers, which may involve nurses delegating caring duties to a carer. But, in line with the professional code, this should only happen if the carer is competent, supervised, supported, and understands the task, its complexity and expected outcomes (Nursing and Midwifery Council, 2015). Community nurse should also identify carer support services and resources locally, and signpost the carer to them. It might help to prepare a 'local resource pack', containing information carers might need to know and highlighting the support they are entitled to, including statutory and non-statutory sources. 

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Dementia cafes: recommendations from interviews with informal carers

Purpose: Dementia cafes (also known as Alzheimer’s or memory cafes) have been running in the UK since 2000. The purpose of this paper is to report on the recommendations from recent research that interviewed family carers on their experiences of using the cafes. Design/methodology/approach: The research was carried out in cafes in and around London, and focussed on informal, unpaid carers’ experiences of using them. In total, 11 carers from five different dementia cafes were interviewed, using semi-structured questionnaires. The results were thematically analysed. Findings: The findings showed that carers had an overwhelming appreciation of the cafes and what they offered, but several of the findings led to the recommendations about the recruitment and training of cafe co-ordinators; how cafes present themselves and their services and how they can offer dedicated support to informal carers. Originality/value: These recommendations will be of use to cafe organisers and commissioners, especially considering the dearth of information currently available in this area.

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Innovative employers enhance caregiver benefits

[...]by 2040 the percentage of people aged 65 and older will have nearly doubled to nearly 22%, up from 13% in 2010. According to the Families and Work Institute’s 2016 National Study of Employers, 42% of employers offer elder care resource and referral services and 78% provide some amount of either paid or unpaid time off for employees who need to care for aging relatives. [...]25% of all family caregivers are younger millennials and 50% are under the age of 50. [...]recently, however, employees with elder care responsibilities had to use their paid time-off days or take an unpaid FMLA leave.

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Caregivers had neighbourhood support but perceived it unsatisfactory and worsened: England Community Life Survey, 2012–2014

There has been limited research studying neighbourhood support for caregivers. Therefore, the aim of the present study was to investigate the support from neighbourhoods between both caregivers and non-caregivers in a country-wide and population-based setting. Data were retrieved from England Community Life Survey, 2012–2014, a new annual household survey conducted by face-to-face interview since 2012, with a representative sample size of 5–6000 adult (aged 16 years and over) resident per year in England. Chi-square test and logistic regression modelling were performed to examine the variance in support from and perception toward neighbourhoods between caregivers and non-caregivers. Of 15,320 study participants, 2315 (16.0%) had a caring responsibility. There was not much variance in feeling belonging, comfortably asking neighbours to keep keys, comfortably asking neighbours to mind children, believing neighbours pulling together and trusting people in the neighbourhood between caregivers and non-caregivers. However, caregivers seemed to be more likely to chat to neighbours (OR 0.77, 95% CI 0.69–0.87, P < 0.001) and comfortably ask neighbours to help collect grocery (OR 0.89, 95% CI 0.81–0.98, P = 0.023). In addition, caregivers tended to perceive their neighbourhoods unsatisfactory (OR 1.17, 95% CI 1.05–1.32, P = 0.007) and worsened in the last 2 years (OR 1.36, 95% CI 1.22–1.51, P < 0.001). For future research, a longitudinal neighbourhood monitoring surveillance for all people would be suggested. For practice and policy, environmental health and nursing programs might need to extend education trainings and interventions to cover all neighbourhoods at different time points that can lessen both disease and caregiving burden and therefore optimize health and quality of life.

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Development of an optimised key worker framework for people with dementia, their family and caring unit living in the community

Background In Australia, dementia is a national health priority. With the rising number of people living with dementia and shortage of formal and informal carers predicted in the near future, developing approaches to coordinating services in quality-focused ways is considered an urgent priority. Key worker support models are one approach that have been used to assist people living with dementia and their caring unit coordinate services and navigate service systems; however, there is limited literature outlining comprehensive frameworks for the implementation of community dementia key worker roles in practice. In this paper an optimised key worker framework for people with dementia, their family and caring unit living in the community is developed and presented. Methods A number of processes were undertaken to inform the development of a co-designed optimised key worker framework: an expert working and reference group; a systematic review of the literature; and a qualitative evaluation of 14 dementia key worker models operating in Australia involving 14 interviews with organisation managers, 19 with key workers and 15 with people living with dementia and/or their caring unit. Data from the systematic review and evaluation of dementia key worker models were analysed by the researchers and the expert working and reference group using a constant comparative approach to define the essential components of the optimised framework. Results The developed framework consisted of four main components: overarching philosophies; organisational context; role definition; and key worker competencies. A number of more clearly defined sub-themes sat under each component. Reflected in the framework is the complexity of the dementia journey and the difficulty in trying to develop a ‘one size fits all’ approach. Conclusions This co-designed study led to the development of an evidence based framework which outlines a comprehensive synthesis of components viewed as being essential to the implementation of a dementia key worker model of care in the community. The framework was informed and endorsed by people living with dementia and their caring unit, key workers, managers, Australian industry experts, policy makers and researchers. An evaluation of its effectiveness and relevance for practice within the dementia care space is required.

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DSHS rolls out two new caregiver support services

Ultimately, programs aim to help seniors stay in homes. The Washington state Department of Social and Health Services has rolled out new services for unpaid caregivers. Bea Rector, Olympia-based director of the home and community services division within the Aging and Long Term Support Administration of DSHS, says the services are designed to help at-home clients and care recipients and may also have financial savings. Like the Family Caregiver Support Program, Aging & Long Term Care of Eastern Washington subcontracts MAC and TSOA assessments and resources through Elder Services of Spokane, a division of Frontier Behavioral Health.

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Microsoft introduces family caregiver leave benefit

Microsoft has upped the ante on its already-enviable employee benefits package by adding paid leave for employees who need to take care of an ailing family member. According to recent research from the Northeast Business Group on Health and AARP, caregiving is among the top 10 employee health and wellness benefits priorities for employers, and most employers agree that in the next five years, caregiving is going to become an increasingly important issue among employees.

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Suddenly, You're a Caregiver

[...]parties, including health-care providers, government agencies, care facilities, and financial institutions, may expect or require that your legal authority to make decisions or provide consent be based on more than being a concerned and loving caregiver. The Social Security Administration can give limited decision authority over Social Security benefits through the title of representative payee. [...]there are frequently many misunderstandings about the basics of this arrangement: * You can't get a power of attorney over someone; it has to be given to you. * The person giving the power of attorney (the principal) must have the legal capacity to understand the authority being delegated. * Agents have the authority to do only those things that are given to them. * Agents must make decisions the way the principal wants, not the way they would do for themselves. A power of attorney could include the authority, for instance, to manage investments, pay bills, collect debts, file lawsuits, sell real estate, negotiate with insurance companies, sell a home or a car, access bank accounts, sign income tax returns, apply for public benefits, or make gifts to charities. To sort out Part A (hospital), Part ? (medical insurance), Part C (Medicare Advantage plans) and Part D (prescription drugs, also called Extra Help), go to www.medicare.gov. Social Security--Your elderly parent may qualify for Extra Help with Medicare prescription drug costs or Supplemental Security income through Social Security. Some states have a program that allows family members to be paid as family caregivers to help...

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Stakeholder Meeting: Integrated Knowledge Translation Approach to Address the Caregiver Support Gap

Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.

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Business Should Embrace Paid Caregiver Leave

Professional services firm Deloitte made headlines last year when it unveiled its plan, offering employees up to 16 weeks of paid time off per year to look after a parent or family member as well as for the birth or adoption of a child. AARP also introduced a program under which its full- and part-time employees may request up to two regularly scheduled workweeks of paid time off per calendar year to assist a family member who is ill or needs physical or medical assistance. LĪ] Scott Frisch is executive vice president and chief operating officer at AARP in Washington, D.C. There is great interest-particularly among working women-in having more workplace flexibility and support.

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How can employers do more to support eldercare in the workplace?

Employers are increasingly finding ways to support workers who are juggling jobs, children, and looking after elderly parents. A new era of flexible working is making life easier for carers. For employers that want to do more, concierge-style support programmes are an avenue to explore.

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Merck KGaA, Darmstadt, Germany Unveils 'Embracing Carers' Initiative

Merck KGaA, Darmstadt, Germany has launched Embracing Carers, a global initiative to recognize and raise awareness of the crucial role of unpaid caregivers.

  • New findings address the emotional, financial and health implications of being an unpaid caregiver
  • 42% of unpaid caregivers surveyed report putting the health of the person they are caring for above their own; more than half report their physical health has suffered
  • Leading organizations come together to raise caregiver challenges as a public health priority
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Carers' beliefs about counselling: a community participatory study in Wales

This interpretivist community participatory study explores carers’ beliefs about the potential usefulness of counselling in relation to the caring role. Twenty semi-structured interviews with carers were transcribed and analysed thematically. All participants thought counselling could potentially be helpful to carers, but their ideas about the ways in which it would help varied according to whether or not they had personal experience of counselling. Only carers with counselling experience had an awareness of counselling as focussing on changing feelings, thoughts, attitudes and behaviours. The implications of the findings for the provision of counselling services are discussed.

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Health of caregiver-employees in Canada

Purpose The purpose of this paper is to investigate the impact of various employment characteristics on the health of Canadian caregiver-employees (CEs), who are working full-time in the labor market while also providing informal/family care to adults. Design/methodology/approach Framed with Pearlin et al.’s (1990) stress model and using data from Statistic Canada’s General Social Survey Cycle 26 (2012), several work-related variables for caregivers were considered, including the availability of various forms of caregiver-friendly workplace policies (CFWPs), and a series of work interferences (WIs) experienced as a result of the caregiving role. Findings This study provides evidence for the value of CFWPs in all workplaces. Counter-intuitively, family and other forms of support were found to negatively relate to both physical and mental health. Originality/value This suggests that CFWPs will not only have an impact on CEs’ physical health outcomes, but will likely decrease the effect of the WIs experienced.

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Dyadic psychological intervention for patients with cancer and caregivers in home-based specialized palliative care: The Domus model

Objective: Patients with incurable cancer and their informal caregivers have numerous psychological and psychosocial needs. Many of these patients wish to receive their care and die at home. Few home-based specialized palliative care (SPC) interventions systematically integrate psychological support. We present a psychological intervention for patient–caregiver dyads developed for an ongoing randomized controlled trial (RCT) of home-based SPC, known as Domus, as well as the results of an assessment of its acceptability and feasibility. Method: The Domus model of SPC for patients with incurable cancer and their caregivers offered systematic psychological assessment and dyadic intervention as part of interdisciplinary care. Through accelerated transition to SPC, the aim of the model was to enhance patients' chances of receiving care and dying at home. Integration of psychological support sought to facilitate this goal by alleviating distress in patients and caregivers. Psychologists provided needs-based sessions based on existential-phenomenological therapy. Feasibility and acceptability were investigated by examining enrollment, nonparticipation, and completion of psychological sessions. Results: Enrollment in the RCT and uptake of the psychological intervention indicated that it was feasible and acceptable to patients and caregivers. The strengths of the intervention included its focus on dyads, psychological distress, and existential concerns, as well as interdisciplinary collaboration and psychological interventions offered according to need. Its main limitation was a lack of an intervention for other family members. Significance of Results: Our results show that psychological intervention can be systematically integrated into SPC and that it appears feasible to provide dyadic needs-based sessions with an existential therapeutic approach. The Domus RCT will provide evidence of the efficacy of a novel model of multidisciplinary SPC

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Mental health carers' experiences of an Australian Carer Peer Support program: Tailoring supports to carers' needs

Carer Peer Support Workers (CPSWs) are people who have lived experience as carers/family members of persons with a mental illness, and are employed to provide support to other carers/family members. This qualitative study aimed to explore carers' experiences within a community-based CPSW pilot program in an Australian mental health service. Semi-structured phone interviews were conducted with 20 carer participants in 2015, 5-10 months following their last contact with the service. Thematic analysis uncovered that carers were generally positive about the CPSW's emotional support, practical support, shared lived experience and mutual understanding, and the "ripple effect" the support had on service users. Some carers, on the other hand, felt that the support was unnecessary; either because they believed that it did not have a lasting effect, the focus should have been on the service user, or that they had previously received enough support. Nevertheless, the study highlighted how mental health services could best utilise and benefit from CPSWs. Moreover, to be most useful, the nature of the carer peer support work should be tailored to the specific needs of the carers; which may vary according to their culture, years of caring experience, and previous experiences with mental health services.

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Remini-Sing: A Feasibility Study of Therapeutic Group Singing to Support Relationship Quality and Wellbeing for Community-Dwelling People Living With Dementia and Their Family Caregivers

Background: Living at home following a diagnosis of dementia can be difficult for both the person living with dementia (PwD) and their family caregivers (FCG). Active group music participation may provide an avenue for emotional release, offer psychosocial support to caregivers and stimulate meaningful interaction between caregivers and loved ones with dementia. Therapeutic music interventions also have the capacity to facilitate reminiscence and social engagement and can help to manage challenging symptoms associated with dementia, such as anxiety, apathy, and agitation. Method: This feasibility study examined the acceptability of a 20-week therapeutic group singing intervention (Remini-Sing) and quantitative research assessments for PwD/FCG dyads living in the community. Quantitative measures for the following outcomes were tested for sensitivity and acceptability: relationship quality (PwD and FCG); life satisfaction, caregiver satisfaction, flourishing, and depression for FCGs; and anxiety, apathy, agitation, and quality of life for PwD. Quantitative assessments were conducted before, during (midway) and after 20 weeks of participation in a therapeutic singing group attended by the PwD and FCG together. The Remini-Sing intervention incorporated vocal warm ups, singing familiar songs, learning new songs, and opportunities for social interaction. Qualitative interviews were conducted with all dyads that completed the intervention. Results: Twelve PWD/FCG dyads were recruited and enrolled in the study. High participation and retention rates indicated that the intervention was received favorably by participants. There were no statistically significant changes on measures from pre to post intervention. However, favorable baseline scores on relationship quality and wellbeing measures were sustained over the 20-week intervention. The testing of these measures for feasibility also revealed that some were too difficult for PwD and thus yielded questionable results, some were potentially less relevant, and there were likely floor and ceiling effects on several of the measures utilized. Conclusions: This study demonstrated good feasibility for a research protocol and therapeutic group singing intervention for community-dwelling PwD and their FCGs. Participant reflections and researcher observations yielded useful information guiding the selection of quantitative outcome measures for future research in this area.

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The impact of early psychosocial intervention on self‐efficacy of care recipient/carer dyads living with early‐stage dementia—A mixed‐methods study

Aim To evaluate the effect of a targeted community‐based psychosocial intervention on self‐efficacy outcomes for care recipient/carer dyads living with early‐stage dementia. Background There is increasing interest in the role of self‐efficacy and self‐management structures in determining positive outcomes for people with dementia. The assumption is that care recipient/carer dyads who receive early support to identify and adjust to dementia‐related changes will cope better in the long term. Design An explanatory sequential mixed‐method design was employed. Primarily quantitative with qualitative data providing a supportive secondary role to expand on and illuminate the quantitative findings. Methods Eighty‐eight dyads were recruited and allocated on a regional basis to an intervention or control group. Intervention group dyads received the Early Diagnosis Dyadic Intervention. Control group dyads received two information manuals. Quantitative data were collected at three time points. Qualitative data were collected via evaluation questionnaires and semistructured interviews. Results Intervention structure, content, and delivery were acceptable to the dyads but few quantitative self‐efficacy findings reached statistical significance. Improvements in self‐efficacy were evident in the postintervention evaluation qualitative responses where dyads expressed greater confidence in identifying and accessing community support. Conclusion There is an urgent need for effective psychosocial interventions to help reduce the impact of dementia symptoms on patients, carers, and society. This study makes an important contribution to our understanding of the capacity of psychosocial interventions to improve self‐efficacy outcomes for care recipient/carer dyads with early‐stage dementia while also illustrating the challenges associated with measuring self‐efficacy in the early stages of the condition.

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Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries

Background People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. Method Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. Results Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. Conclusion Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families. Electronic supplementary material The online version of this article (10.1186/s12877-018-0816-1) contains supplementary material, which is available to authorized users.

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Impact of Internet-Based Interventions on Caregiver Mental Health: Systematic Review and Meta-Analysis

Background: The health of informal caregivers of adults with chronic conditions is increasingly vital since caregivers comprise a large proportion of supportive care to family members living in the community. Due to efficiency and reach, internet-based interventions for informal caregivers have the potential to mitigate the negative mental health outcomes associated with caregiving. Objective: The objective of this systematic review and meta-analysis was to examine the impact of internet-based interventions on caregiver mental health outcomes and the impact of different types of internet-based intervention programs. Methods: MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane, and AgeLine databases were searched for randomized controlled trials or controlled clinical trials published from January 1995 to April 2017 that compared internet-based intervention programs with no or minimal internet-based interventions for caregivers of adults with at least 1 chronic condition. The inclusion criteria were studies that included (1) adult informal caregivers (aged 18 years or older) of adults living in the community with a chronic condition; (2) an internet-based intervention program to deliver education, support, or monitoring to informal caregivers; and (3) outcomes of mental health. Title and abstract and full-text screening were completed in duplicate. Data were extracted by a single reviewer and verified by a second reviewer, and risk of bias assessments were completed accordingly. Where possible, data for mental health outcomes were meta-analyzed. Results: The search yielded 7923 unique citations of which 290 studies were screened at full-text. Of those, 13 studies met the inclusion criteria; 11 were randomized controlled trials, 1 study was a controlled clinical trial, and 1 study comprised both study designs. Beneficial effects of any internet-based intervention program resulted in a mean decrease of 0.48 points (95% CI –0.75 to –0.22) for stress and distress and a mean decrease of 0.40 points (95% CI –0.58 to –0.22) for anxiety among caregivers. For studies that examined internet-based information and education plus professional psychosocial support, the meta-analysis results showed small to medium beneficial effect sizes of the intervention for the mental health outcomes of depression (–0.34; 95% CI –0.63 to –0.05) and anxiety (–0.36; 95% CI –0.66 to –0.07). Some suggestion of a beneficial effect on overall health for the use of information and education plus combined peer and professional support was also shown (1.25; 95% CI 0.24 to 2.25). Overall, many studies were of poor quality and were rated at high risk of bias. Conclusions: The review found evidence for the benefit of internet-based intervention programs on mental health for caregivers of adults living with a chronic condition, particularly for the outcomes of caregiver depression, stress and distress, and anxiety. The types of interventions that predominated as efficacious included information and education with or without professional psychological support, and, to a lesser extent, with combined peer and psychological support. Further high-quality research is needed to inform the effectiveness of interactive, dynamic, and multicomponent internet-based interventions. Trial Registration: PROSPERO CRD42017075436; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=75436 (Archived by WebCite at http://www.webcitation.org/709M3tDvn)

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‘There is still so much inside’: The impact of personalised reminiscence, facilitated by a tablet device, on people living with mild to moderate dementia and their family carers

The aim of this qualitative study was to explore the impact of a home-based, personalised reminiscence programme facilitated through an iPad app on people living with dementia and their family carers. Semi-structured interviews were used to collect data from 15 people living with dementia and 17 family carers from a region of the United Kingdom. The interviews were recorded, transcribed and analysed using thematic analysis. Six key themes emerged related to usability (‘It’s part of my life now’); revisiting the past (‘Memories that are important to me’); home use (‘It was homely’); impact on the person living with dementia (‘It helped me find myself again’); gains and abilities (‘There is still so much inside’) and impact on relationships (‘It’s become very close’). These themes highlighted the impact of the reminiscence experience at an individual and relationship level for people living with dementia and their carers. The reminiscence experience also appeared to facilitate the development of new insights among participants that emphasised abilities and gains rather than disabilities and losses. The significance of personal memories was a core theme although this was not without its challenges, particularly if memories were distressing. The reminiscence experience was differentiated by individual roles. Carers tended to become more relationship-focused, whereas people living with dementia highlighted the significance of learning new skills. The study concluded that individual specific reminiscence supported by an iPad app can have a positive impact on people living with dementia and their carers at an individual and relationship level.

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Pilot of an acceptance and commitment therapy and schema group intervention for mental health carer's interpersonal problems

The use of an Acceptance and Commitment Therapy (ACT) and Schema group intervention with the mental health carer population has a strong justification: 1) There is a theoretical rationale for the role of experiential avoidance and negative expectations of relationships (and associated cognitive fusion) in underpinning mental health carers interpersonal problems; 2) Correlational data demonstrates that the processes targeted by ACT (i.e. experiential avoidance) and Schema therapy (i.e. negative expectations of relationships) are associated with mental health carer's experiences of interpersonal problems; 3) Existing studies demonstrate positive results for ACT based interventions with caregiver populations; 4) Multicomponent carer interventions with two conceptually different approaches have achieved more positive outcomes in prior studies. The current study aims to pilot an ACT and Schema group intervention for mental health carers’ interpersonal problems, examining acceptability and conducting preliminary assessment of effectiveness. 

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Understanding and responding to the needs of the carers of people with dementia in the UK, the US and beyond

...this paper explores:

  • Insights into the role and experience of carers in different national contexts
  • Good practice examples of services, organisations and approaches which have sought to improve support to the carers of people with dementia
  • Policy and practice recommendations for key stakeholders such as policy makers, welfare services and employers

Given the traditional focus of Walgreens Boots in the US and the UK (and given very different policy contexts and welfare mixes), the review focuses on these two countries, with additional insights from other countries prominent in the literature and representing different welfare regimes. After searching the literature and following dialogue with UK and US respondents, this includes:

  • Norway (as an example of developments in a Scandinavian system with a comprehensive welfare state, an emphasis on maximising labour market participation and a commitment to gender equality)
  • Australia (as an example of an Australasian country with strong links to the UK)
  • South Africa (as an example of an African country with a younger population but a growing recognition of future needs as the population ages, as well as challenges with HIV-associated dementia)

Throughout the paper, there is an overarching question about the extent to which different countries are ready for the implications of the demographic changes they face, and there are regular textboxes which pose questions to government, to employers, to health and social care, and to broader society to help them reflect on key themes.

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Can specially trained community care workers effectively support patients and their families in the home setting at the end of life?

Surveys indicate that many Australians would prefer to die at home, but relatively few do. Recognising that patients and their families may not have the support they need to enable end‐of‐life care at home, a consortium of care providers developed, and received funding to trial, the Palliative Care Home Support Program (PCHSP) across seven health districts in New South Wales, Australia. The programme aimed to supplement end‐of‐life care in the home provided by existing multidisciplinary community palliative care teams, with specialist supportive community care workers (CCWs). An evaluation of the service was undertaken, focussing on the self‐reported impact of the service on family carers (FCs), with triangulation of findings from community palliative care teams and CCWs. Service evaluation data were obtained through postal surveys and/or qualitative interviews with FCs, community palliative care teams and CCWs. FCs also reported the experience of their loved one based on 10 items drawn from the Quality of Death and Dying Questionnaire (QODD). Thematic analysis of surveys and interviews found that the support provided by CCWs was valued by FCs for: enabling choice (i.e. to realise end‐of‐life care in the home); providing practical assistance (“hands‐on”); and for emotional support and reassurance. This was corroborated by community palliative care teams and CCWs. Responses by FCs on the QODD items indicated that in the last week of life, effective control of symptoms was occurring and quality of life was being maintained. This study suggests that satisfactory outcomes for patients and their families who wish to have end‐of‐life care in the home can be enabled with the additional support of specially trained CCWs. A notable benefit of the PCHSP model, which provided specific palliative care vocational training to an existing community care workforce, was a relatively rapid increase in the palliative care workforce across the state.

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Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers’ experiences

Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers’ experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. Design: A narrative approach was used, with thematic and content analysis of open-ended interviews. Setting/participants: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. Results: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients’ goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients’ symptoms or strain of relationships. Conclusion: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement.

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Couples in Need of Home Care Services: Experiences With Support From Care Professionals

Many older people desire to remain in their homes and be cared for by a family member, but this arrangement requires support from care professionals. The aim was to describe how couples in need of home care services experienced the received support from care professionals. A qualitative design with content analysis was used. Data were collected through diaries and focus groups consisting of eight couples between 65 and 80 years, and two registered nurses. The main findings are described by the following categories: Organizational adapted, Withholding, Being in a gap, resulting in the theme Lack of professional support. Couples experienced shortcomings that were related to the organization, the care professionals, and the couples themselves. The theme Lack of professional support requires more knowledge.

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The role of the memory service in helping carers to prepare for end of life: A mixed methods study

Objectives: The objective of the study is to explore current practice and the role taken by UK memory services in helping carers of people with dementia prepare for the end of life. Methods: We used mixed methods including a survey (48 responses/51% response rate) and semistructured interviews (n = 12) with clinicians working in UK memory services accredited by the Memory Services National Accreditation Programme. We used descriptive statistics to report survey findings and thematically analysed interview and survey qualitative data. Results: Surveys: services routinely discussed with carers the progressive nature of dementia (89%), legal arrangements (health: 72%; finances: 74%), advance care planning (63%), and implications of loss of capacity (61%). Fewer services routinely discussed the terminal nature of dementia (41%) and meaning of death (11%) with carers. Most (89%) agreed that these conversations were in line with their role. Interview findings corresponded with survey findings. Themes included diagnosis considered too early to discuss end of life, discussions being inconsistent with a “living well” approach, people with dementia being resistant to conversations, and discussions of spirituality crossing professional boundaries. Services' capacity for follow‐up with carers impacted on ability to broach these topics. Conclusions: More in‐depth and distressing topics such as end of life and advance care planning require longer follow‐up to establish relationships to broach difficult topics. Variability in follow‐up practices between services created inequity in the extent to which memory services could address these topics. More research is required to investigate the best method for broaching these topics with carers and the person with mild dementia within different health care contexts.

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Effects of modified 8-week reminiscence therapy on the older spouse caregivers of stroke survivors in Chinese communities: A randomized controlled trial

Objective: Our aim was to evaluate the effectiveness of a modified 8‐week reminiscence therapy on the burden, positive experience, and life satisfaction of older spouse caregivers and the life satisfaction of stroke survivors. Methods: We conducted a randomized controlled trial by using 75 older stroke couples recruited from communities in Zhengzhou, China. We randomly assigned participants to 1 of 3 groups: Group 1 (G1, 25 couples, all attend intervention) and Group 2 (G2, 22 couples, only caregivers attend intervention), who participated in a modified 8‐week reminiscence therapy, and a waiting list (control) group (G3, 28 couples). Interviewers blinded to treatment group assignment administered the life satisfaction to both stroke survivors and caregivers, caregiver burden, and positive experience for caregivers, at preintervention, immediately postintervention, and at 1 month and 3 months after cessation of the intervention. Results: We found a statistically significant interaction between treatment groups and assessment time points for the 4 outcome measures (P < .001). Although the effects were decreased after intervention at 1 month, the improvement in caregivers' positive experience, life satisfaction, burden, and life satisfaction of stroke survivors were still significant (P < .001). Conclusions: The use of a modified 8‐week reminiscence therapy in this study sample improved the life satisfaction of stroke survivors and their spouse caregivers, improved the positive experience of caregivers, and decreased the burden of caregivers.

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Help-seeking barriers and facilitators for affected family members of a relative with alcohol and other drug misuse: A qualitative study

Aims: To identify affected family members' (AFMs) experiences of barriers and facilitators to informal and formal help-seeking for themselves and on behalf of a close relative with alcohol and other drug (AOD) misuse. Methods: Qualitative study, informed by interpretative phenomenological analysis. Semi-structured, audio-recorded, telephone interviews were used to collect data from 31 AFMs. Results: AFMs experienced several overlapping and at times competing help-seeking obstacles and enablers in accessing informal and formal support for themselves and on behalf of their relative with AOD misuse, and these are reflected in two themes and associated sub-themes: barriers to help-seeking and facilitators to help-seeking. Five help-seeking barriers were abstracted from the data: Stigma discourages help-seeking, Difficulty locating informal and formal support services, Previous negative AOD service help-seeking experiences deter subsequent help-seeking, Hopelessness inhibits help-seeking, and Feeling undervalued as an AFM. Three help-seeking facilitators were abstracted from the data: Previous positive help-seeking experiences increase future help-seeking, Overcoming shame and isolation and being open with trusted significant others, and Persevering in help-seeking. Conclusions: AFMs who access informal and formal help sources for themselves, and on behalf of their relative, are more likely to sustain their important support-giving role. Measures to strengthen AFMs' capacity and willingness to support their relative should be founded on an understanding of factors that affect their own help-seeking in addition to those encountered when help-seeking on behalf of their relative. Our findings have implications for the visibility of AOD services and informal support groups on the Internet, organisational culture of some AOD services, valuing the contributions of AFMs, and protecting AFMs and their relatives' privacy. Our findings also have implications for reducing public stigma of AOD misuse, changing some AFMs' scepticism about treatment outcomes, and reinforcing and enhancing AFMs' skills in persevering with help-seeking.

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Help-seeking barriers and facilitators for affected family members of a relative with alcohol and other drug misuse: A qualitative study

Aims: To identify affected family members' (AFMs) experiences of barriers and facilitators to informal and formal help-seeking for themselves and on behalf of a close relative with alcohol and other drug (AOD) misuse. Methods: Qualitative study, informed by interpretative phenomenological analysis. Semi-structured, audio-recorded, telephone interviews were used to collect data from 31 AFMs. Results: AFMs experienced several overlapping and at times competing help-seeking obstacles and enablers in accessing informal and formal support for themselves and on behalf of their relative with AOD misuse, and these are reflected in two themes and associated sub-themes: barriers to help-seeking and facilitators to help-seeking. Five help-seeking barriers were abstracted from the data: Stigma discourages help-seeking, Difficulty locating informal and formal support services, Previous negative AOD service help-seeking experiences deter subsequent help-seeking, Hopelessness inhibits help-seeking, and Feeling undervalued as an AFM. Three help-seeking facilitators were abstracted from the data: Previous positive help-seeking experiences increase future help-seeking, Overcoming shame and isolation and being open with trusted significant others, and Persevering in help-seeking. Conclusions: AFMs who access informal and formal help sources for themselves, and on behalf of their relative, are more likely to sustain their important support-giving role. Measures to strengthen AFMs' capacity and willingness to support their relative should be founded on an understanding of factors that affect their own help-seeking in addition to those encountered when help-seeking on behalf of their relative. Our findings have implications for the visibility of AOD services and informal support groups on the Internet, organisational culture of some AOD services, valuing the contributions of AFMs, and protecting AFMs and their relatives' privacy. Our findings also have implications for reducing public stigma of AOD misuse, changing some AFMs' scepticism about treatment outcomes, and reinforcing and enhancing AFMs' skills in persevering with help-seeking.

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Impact of a Tailored Multicomponent Interdisciplinary Intervention on Family Caregiver Preparedness

In 2013, nearly 43.5 million Americans provided 37 billion hours of uncompensated care to their loved ones. Despite their significant contributions, family caregivers often feel inadequately prepared for their caregiving roles resulting in increased caregiver burden, which impacts their health and well-being. To enhance family caregivers’ sense of preparedness, a tailored multicomponent interdisciplinary caregiver intervention was implemented in an inpatient rehabilitation unit of an urban community hospital in the Midwest.

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Supporting carers to manage pain medication in cancer patients at the end of life: A feasibility trial

Background: Carers of people with advanced cancer play a significant role in managing pain medication, yet they report insufficient information and support to do so confidently and competently. There is limited research evidence on the best ways for clinicians to help carers with medication management. Aims: To develop a pain medicines management intervention (Cancer Carers Medicines Management) for cancer patients’ carers near the end of life and evaluate feasibility and acceptability to nurses and carers. To test the feasibility of trial research procedures and to inform decisions concerning a full-scale randomised controlled trial. Design: Phase I-II clinical trial. A systematic, evidence-informed participatory method was used to develop CCMM: a nurse-delivered structured conversational process. A two-arm, cluster randomised controlled feasibility trial of Cancer Carers Medicines Management was conducted, with an embedded qualitative study to evaluate participants’ experiences of Cancer Carers Medicines Management and trial procedures. Setting: Community settings in two study sites. Participants: Phase I comprises 57 carers, patients and healthcare professionals and Phase II comprises 12 nurses and 15 carers. Results: A novel intervention was developed. Nurses were recruited and randomised. Carer recruitment to the trial was problematic with fewer than predicted eligible participants, and nurses judged a high proportion unsuitable to recruit into the study. Attrition rates following recruitment were typical for the study population. Cancer Carers Medicines Management was acceptable to carers and nurses who took part, and some benefits were identified. Conclusion: Cancer Carers Medicines Management is a robustly developed medicines management intervention which merits further research to test its effectiveness to improve carers’ management of pain medicines with patients at the end of life. The study highlighted aspects of trial design that need to be considered in future research.

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Managing medications for individuals living with a dementia: Evaluating a web‐based information resource for informal carers

Aims The purpose of the study was to evaluate the usefulness of the “Managing Medicines for People with Dementia” (www.dementiameds.com) website for informal carers. Background The management of medications for individuals living with a dementia by informal carers is a neglected area of care. We know that informal carers find it difficult accessing reliable and comprehensive information about medications. We also know that the Internet is a contemporary and growing medium through which consumers access health information. This study was unique in that it brought these two elements together through an interdisciplinary study about the usefulness of a new website providing information on medication management. Methods Data collection consisted of focus groups with informal carers of individuals living with a dementia. Data were analysed through content analysis. Findings Four themes were generated from the data to explain the evaluation of the website by informal carers: (1) Suitability of the website (2) Presentation of the website (3) Unexpected benefits of the website content (4) Future enhancements for website. Participants overwhelmingly agreed the content of the website filled a gap in information needs about medication management for individuals living with a dementia. Implications for practice This qualitative evaluation demonstrated the value of the website as a resource for informal carers of individuals living with a dementia. The resource could also be used by community nurses and other healthcare practitioners to help informal carers better manage the medication regimes of individuals living with a dementia. The resource has the potential to reduce complications associated with mismanagement of medications and contribute to new policies for implementing safe medication practices.

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Engaging Young Carers With Science Through Textile-Based Crafts

Textile-based crafts were used to engage young carers (under 18s providing care for another person) and accompanying adults in learning about underlying chemistry concepts, in an economically deprived area of northwest England; the region of the United Kingdom with the highest number of young carers. This science-crafts collaboration was supported by the Royal Society of Chemistry Outreach Fund and a British Science Week Community Grant. Feedback from participants indicated strong positive impacts on interest in and understanding of chemistry and its relevance to everyday life, social benefits, and, for accompanying adults, increased confidence in engaging young people with learning about chemistry.

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Feasibility, useability and acceptability of technology-based interventions for informal cancer carers: a systematic review

Background: Carers looking after someone with cancer often experience negative impacts on their own health. M-health interventions have been designed to provide information and support to patients and their carers. However, the effectiveness of technology-based interventions for carers is less well understood. The objectives were to assess the feasibility, useability and acceptability of technology-based interventions among carers of people living with cancer. Methods: A systematic search of the CINAHL, MEDLINE and PSYCINFO databases was performed using terms related to web-based interventions and smartphone applications, carers and cancer. Studies were included if a randomised controlled trial or pilot study was conducted, focused on adult carers looking after another adult with cancer and were published between January 2007-June 2017. Articles were excluded if they reported qualitative results only or were evaluating existing websites and applications. Feasibility was measured by attrition, recruitment rates and frequency of intervention use; useability was measured by the ease of intervention use and the role of features to minimise errors in use. Acceptability was measured by carers’ perception of the appropriateness of the content and their ability to incorporate the intervention into their daily routines. Results: Of the 729 articles, six articles met the inclusion criteria. Attrition ranged from 14% - 77%, recruitment rates from 20% - 66% and intervention useability varied across studies. Half of the studies implemented measures to improve useability. Overall, carers rated the content of the interventions as appropriate and reported improved knowledge and communication. Acceptability was further demonstrated as carers preferred the flexibility available with web-based interventions. Conclusions: Technology-based interventions are suitable for use among carers of people with cancer. Further research is required to fully assess the impact of technology as an information and support mechanism for carers.

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Feasibility Testing and Refinement of a Supportive Educational Intervention for Carers of Patients with High-Grade Glioma a Pilot Study

The aim of this pilot study was to test the feasibility and acceptability of a family carer intervention for carers of patients with high-grade glioma (HGG). The intervention consisted of: (1) an initial telephone assessment of carer needs; (2) a personalised tabbed resource file; (3) nurse-led home visit; and (4) ongoing telephone support. Two consumer representatives reviewed the intervention resources. The intervention was then piloted with participants who were the primary carer for patients undergoing treatment for HGG in Western Australia. Two consumers provided feedback on the resource, and 10 carers participated in the pilot. Positive feedback was received about the resource manual and intervention. Suggestions were also made for changes which were implemented into the trial. The surveys were shortened based on feedback. Participants identified a large range of issues during nursing assessments which would not otherwise be identified or addressed for carers receiving routine care. As a result of providing the intervention, the nurse was able to make referrals to address needs that were identified. This pilot study enabled us to refine and test the Care-IS intervention and test the feasibility and acceptability of proposed survey instruments. We were also able to estimate recruitment and retention and the overall study timeline required for the randomised controlled trial we are now conducting. It has also demonstrated the role of the nurse who delivered the intervention and allowed us to refine communication and referral pathways.

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Caring For Me and You: the co-production of a computerised cognitive behavioural therapy (cCBT) package for carers of people with dementia

Objectives: Carers of people with dementia face barriers in accessing therapy for mental health difficulties. Computerised cognitive behavioural therapy (cCBT) packages can be effective in treating a range of presentations; however, tailored packages for carers' unique needs are lacking. Our aim was to design a cCBT package for carers to address the limitations of previous online interventions, by including users and experts as consultants and collaborators throughout the project. Method: We adopted a three-phase approach to the development process. Firstly, a data-gathering phase in which current literature and best practice was reviewed, and semi-structured interviews conducted with service users, academic and clinical experts. Secondly, a co-production and refinement phase with carers testing materials and providing feedback. Thirdly, a pilot field testing phase of service users and the research team testing the package. Results: The ‘Caring For Me and You’ package adopted a transdiagnostic approach to take account of the range of difficulties that carers face. The package consisted of 20 short sessions with features built in to engage users and personalise content to meet individuals' needs. Conclusion: User involvement was central to the design of the ‘Caring For Me and You’ package which is currently being evaluated in a three-arm randomised controlled trial.

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Extraordinary normalcy: Home, relationships and identities in narratives of unpaid care

Based on audio diaries and narrative interviews with family carers, this paper suggests care can be understood as an experience of ‘extraordinary normalcy’, meaning that profound shifts in home, relationships and identities take place whilst caring, yet these become part of the normalcy of family life. To maintain and understand a sense of normalcy, our participants utilise professional and technological interventions in the home and draw on notions of responsibility, reciprocity and role-reversal as frameworks for explaining why they continue to care, despite the challenges it brings. The paper considers how domestic activities performed in the home can both highlight the extraordinary aspects of care and help maintain the normalcy of the everyday. Extraordinary normalcy is a concept that problematises definitions of care that remove it from the relational and everyday, yet acknowledges the challenges people face when performing care. This paper contributes to a call for a narrative based development of social policy and makes recommendations for policy and practice based on the in-depth accounts of family carers.

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Mobile apps for caregivers of older adults: Quantitative content analysis

Background: Informal caregivers of older adults provide critical support for their loved ones but are subject to negative health outcomes because of burden and stress. Interventions to provide information and resources as well as social and emotional support reduce burden. Mobile apps featuring access to information, assistance with scheduling, and other features can automate support functions inexpensively and conveniently and reach a greater proportion of caregivers than otherwise possible. Objective: The aim of this study was to identify mobile apps geared towards caregivers of older adults, catalog features, and suggest best practices for adoption based on empirical findings of beneficial interventions in the caregiving literature. Methods: Search for apps focused on ones catered for caregivers of older adults in Google Play and iTunes, compiling their features, and identifying features reflecting categories of support identified in successful intervention studies to negative caregiver outcomes. Intervention research indicates that provision of information and resources, assistance in practical problem solving, coordinating care among multiple caregivers, and emotional support reduce caregiver burden. Results: Despite approximately over 200,000 mobile health–related apps, the availability of mobile apps for caregivers is relatively sparse (n=44 apps) as of October 2017. Apps generally addressed specific categories of support, including information and resources, family communication, and caregiver-recipient interactions. Few apps were comprehensive. Only 8 out of 44 (18%) had features that addressed three or more categories. Few apps provided specific stress reduction exercises for caregivers, which is important for reducing burden. Conclusions: Mobile apps have the potential to provide resources, just­-in­-time information for problem-solving, and stress reduction strategies for caregivers. Many apps offer functions that have been shown to reduce burden and improve health outcomes in caregivers, but few provide emotional support. Using an evidence­-based practice approach, mobile apps for caregivers can provide multiple beneficial support functions. Apps can serve a much larger proportion of this highly underserved population in their mobile form than more traditional means, improving their health and quality of life.

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Partners of Individuals with Borderline Personality Disorder: A Systematic Review of the Literature Examining Their Experiences and the Supports Available to Them

Over a third of individuals with borderline personality disorder (BPD) are in long-term romantic partnerships, yet little is known about the experiences of their partners. Because difficulties in interpersonal relationships are a hallmark of BPD, it is especially important to understand the support needs of their romantic partners. This systematic review investigates the experiences of romantic partners of adult individuals with BPD and the interventions designed to support them. Twenty-two articles were found, 13 of which pertained to partner experiences and 9 to interventions. Thematic analysis was used to identify three main themes in the descriptions of partners' experiences: emotional challenges, dual roles as both a romantic partner and parental/therapeutic figure, and lack of control. The available interventions, which consisted of educational and skills-based programs with limited efficacy data, addressed only a small portion of the subthemes identified in the literature describing partners' experiences. The discrepancy between the needs identified in the partner-experience literature and the interventions available suggests a need to develop and evaluate more partner-oriented programming. Such programming should use psychoeducation, peer support, and individual- and relationship-based skills development to address and therefore improve the experiences of partners of individuals with BPD.

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Informal Caregivers of Cancer Patients: Review of Interventions, Care Activities, and Outcomes

Family and friends are important resources for patients during cancer treatment and warrant an expanded review of not only what they contribute to patient care but also the support they need and the personal consequences of caregiving. A review of 14 randomized controlled trials published between 2009 and 2016 was completed utilizing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The results of this review expand the scope of what is known regarding relationships among supportive interventions for caregivers, activities performed to care for cancer patients, caregiver characteristics, and health outcomes of caregivers. Specific results include (a) updated synthesis of literature associated with variables important to caregiving, (b) attention to interventions designed to support caregivers, (c) classification of specific activities caregivers perform for cancer patients, (d) identification of caregiver characteristics associated with specific care activities, (e) inconsistencies in measurement of care activities, and (f) minimal reporting of outcome variables.

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Exploring factors that impact the decision to use assistive telecare: perspectives of family care-givers of older people in the United Kingdom

In the United Kingdom (UK), an ageing population met with the reduction of social care funding has led to reduced support for older people marked with an increased demand on family care-givers. Assistive telecare (AT) devices are viewed as an innovative and effective way to support older people. However, there is limited research which has explored adoption of AT from the perspectives of family care-givers. In-depth, semi-structured interviews were conducted with 14 family care-givers of patients who used the Assistive Telehealth and Telecare service in Cambridgeshire, UK. Family care-givers were either the spouse (N = 8) or child of the patient (N = 6). The patients' age ranged from 75 to 98, and either received a telecare standalone device or connected service. Framework analysis was used to analyse the transcripts. This study revealed that family care-givers play a crucial role in supporting the patient's decision to adopt and engage with AT devices. Knowledge and awareness, perceived responsibility, usefulness and usability, alongside functionality of the equipment, were influential factors in the decision-making process. AT devices were viewed positively, considered easy to use, useful and functional, with reassurance of the patient's safety being a core reason for adoption. Efforts to increase adoption and engagement should adapt recruitment strategies and service pathways to support both the patient and their care-giver.

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Community-Dwelling People Living With Dementia and Their Family Caregivers Experience Enhanced Relationships and Feelings of Well-Being Following Therapeutic Group Singing: A Qualitative Thematic Analysis

The progression of dementia can severely compromise interpersonal connection and relationship quality between people living with dementia (PwD) and their family caregivers (FCG), leading to social isolation and poor quality of life for both. Therapeutic group singing (TGS) is a socially engaging, stimulating, and supportive pursuit that community-dwelling PwD and their FCG can participate in together. This study aimed to build on the findings from previous research by undertaking a thematic analysis of interviews with nine PwD (five women, four men; mean age = 79.1 years) and nine FCG (five women, four men; mean age = 75.7 years). The interviews explored participants’ perspectives and experiences of a 20-week TGS intervention, underpinned by Kitwood’s model of person-centered care. Inductive thematic analysis resulted in the emergence of five themes which described how TGS for PwD and their FCG: (1) included supportive therapeutic facilitation and design features; (2) made group singing more accessible; (3) fostered new empathic friendships; (4) enhanced relationships between PwD and FCG; and (5) led to personal feelings of wellbeing for both PwD and FCG. Affinity with others who had similar life experiences and challenges created a sense of mutual understanding and camaraderie, which made group singing accessible without fear of judgment and social stigmas. For some PwD/FCG dyads, TGS meant they could continue a lifelong passion for singing together, while others enjoyed participating in singing together for the first time. Both PwD and FCG participants described personal feelings of acceptance, improved social confidence, mood, and purpose. Further, participants valued mental stimulation from TGS such as learning new skills and memory support. A model explaining relationships between themes suggests that TGS with person-centered facilitation features for PwD/FCG dyads led to affinity among group members with ripple effects, which enhanced accessibility to group singing, the formation of empathic friendships, PwD/FCG relationship quality, and personal wellbeing for both PwD and FCG. Psychoemotional, social and cognitive benefits from TGS described by participants in this study are known to promote self-identity, healthy relationships, and quality of life. This research highlights a need for improved availability of TGS for community-dwelling PwD/FCG dyads.

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Effectiveness of a strength-oriented psychoeducation on caregiving competence, problem-solving abilities, psychosocial outcomes and physical health among family caregiver of stroke survivors: A randomised controlled trial

Background: Family caregivers provide the foundation for long-term home care of stroke survivors. The overwhelming stress associated with caregiving hinders the ability of family caregivers to utilise their internal and external resources to cope with this situation, thereby placing their own health at risk. We conducted a randomised controlled trial of a strength-oriented psychoeducational programme on conventional stroke rehabilitation for family caregivers. Objectives: To evaluate the effectiveness of a strength-oriented psychoeducational programme on the caregiving competence, problem-solving coping abilities, caregiver’s depressive symptoms, caregiving burden and resources (family functioning, social support) and physical health (such as caregiving-related injury), as well as potential placement of stroke survivors. Design: A prospective multi-centre and single-blinded randomised controlled trial stratified by survivors’ history of stroke. Setting and participants: Adult stroke patients and their family caregivers were recruited from the medical wards of a regional acute and two rehabilitation hospitals in the Eastern New Territories of Hong Kong. Methods: The design of the trial was based on the relational/problem-solving model. Family caregivers of stroke survivors who had been admitted to the study hospitals completed a set of questionnaires before randomisation, immediately, one- and three-months post-intervention. The control group received usual care, whereas the intervention group received an additional 26-week strength-oriented psychoeducational programme (two structured individual face-to-face pre-discharge education sessions on stroke and its associated caregiving skills and six biweekly post-discharge telephone-based problem-solving coping skills training sessions). Data were analysed using the generalized estimating equation and multiple regression models and chi-square tests. Results: We recruited 128 caregiver–survivor dyads. The intervention group demonstrated significantly greater improvements throughout the study (p < 0.01) in terms of caregiving competence, problem-solving coping abilities and social support satisfaction. This group also displayed significantly greater improvements in terms of family functioning (p < 0.05) at one-month post-intervention, an increased number of social support (p < 0.001) and a lower level of burden at three-month post-intervention. However, there was no significant effect on enabling stroke survivors to remain in their home. Post-hoc analysis showed a significant and indirect effect of problem-solving coping abilities, which suggested its mediating effect on caregiving competence of stroke caregivers. Conclusions: Findings suggest that incorporating a strength-oriented psychoeducational programme into the existing stroke rehabilitation protocol can foster a healthy transition to caregiving among family members of stroke survivors.

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Informal caregiving in head and neck cancer: caregiving activities and psychological well-being

The purpose of this study was to quantify the general cancer support activities that long‐term carers of head and neck cancer (HNC) survivors engage in; and the relationships between these care activities and psychological well‐being. Respondents answered a survey detailing their caring activities, the amount of time that they spent on those activities and how comfortable they felt engaging in them. Psychological well‐being was assessed by the Depression Anxiety Stress Scales‐21. A total of 197 carers took part in the study. The majority (76%) were women, mean age 57.4. Mean time since diagnosis was 6.2 years. In the past month, 45% of carers did not spend any extra time per week helping their relative/friend with general caring activities such as cleaning the house; 31% spent 1–19 hr/week and 23% spent 20 or more hours/week doing so. Most carers were comfortable assisting their relative/friend, though more carers felt uncomfortable assisting with HNC‐specific support tasks (31% uncomfortable helping with medication) compared with general support tasks (7% uncomfortable helping with appointments). Feeling uncomfortable with head and neck‐specific care tasks was a significant predictor of experiencing depression and anxiety.

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Carers’ experiences of group therapeutic songwriting: An interpretive phenomenological analysis

Supporting carers of people living with dementia to live happy and healthy lives is of international importance. This study aimed to explore carers’ experiences of participating in a creative group songwriting process. Four carers (2 male and 2 female) of people living with dementia participated in four therapeutic group songwriting sessions. Facilitated by two music therapists and support staff, the participants co-created a song that reflected their carer experiences allowing positive and negative perspectives to be represented in the song. Interpretative phenomenological analysis was used to analyse interviews with the four carers at the end of the programme. A cross-case analysis was performed to identify recurring themes and subthemes. Findings highlight that carers’ experience of the programme went beyond their expectations. They found the collaborative component of co-creating songs was meaningful, and subsequently, the song held meaning for the group. Carers experienced the songwriting process as empowering, having a voice that was heard by genuinely attentive listeners and that they learned about themselves, each other, and the carer journey through the process. This study provides preliminary indications that group songwriting in carer programmes is a worthwhile experience, but further research is needed to understand its impact on wellbeing.

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Exploring the cancer caregiver's journey through web‐based Meaning‐Centered Psychotherapy

Objective Psychosocial interventions are historically underutilized by cancer caregivers, but support programs delivered flexibly over the Internet address multiple barriers to care. We adapted Meaning‐Centered Psychotherapy for cancer caregivers, an in‐person psychotherapeutic intervention intended to augment caregivers' sense of meaning and purpose and ameliorate burden, for delivery in a self‐administered web‐based program, the Care for the Cancer Caregiver (CCC) Workshop. The present study evaluated the feasibility, acceptability, and preliminary effects of this program. Methods Eighty‐four caregivers were randomized to the CCC Workshop or waitlist control arm. Quantitative assessments of meaning, burden, anxiety, depression, benefit finding, and spiritual well‐being were conducted preintervention (T1), within 2‐weeks postintervention (T2), and 2‐ to 3‐month follow‐up (T3). In‐depth semistructured interviews were conducted with a subset of participants. Results Forty‐two caregivers were randomized to the CCC Workshop. Attrition was moderate at T2 and T3, with caregiver burden and bereavement as key causes of drop‐out. At T2 and T3, some observed mean change scores and effect sizes were consistent with hypothesized trends (eg, meaning in caregiving, benefit finding, and depressive symptomatology), though no pre‐post significant differences emerged between groups. However, a longitudinal mixed‐effects model found significant differential increases in benefit finding in favor of the CCC arm. Conclusions The CCC Workshop was feasible and acceptable. Based on effect sizes reported here, a larger study will likely establish the efficacy of the CCC Workshop, which has the potential to address unmet needs of caregivers who underutilize in‐person supportive care services.

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Admiral Nurses delivering workplace clinics for family carers: Innovative practice

Dementia UK and The Charity for Civil Servants teamed up to test the acceptability and feasibility of delivering a work-based Admiral Nurse clinic to support family carers during their employed working hours. This paper presents some of the learning from this innovative approach.

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The Trial of Ascertaining Individual Preferences for Loved Ones' Role in End-of-Life Decisions (TAILORED) Study: A Randomized Controlled Trial to Improve Surrogate Decision Making

Context Patients with terminal illnesses often require surrogate decision makers. Prior research has demonstrated high surrogate stress, and that despite standards promoting substituted judgment, most patients do not want their surrogates to make pure substituted judgments for them. It is not known how best to help loved ones fulfill the surrogate role. Objectives To test the effectiveness of an intervention to help surrogate decision makers. Methods One hundred sixty-six patients (41% with amyotrophic lateral sclerosis and 59% with gastrointestinal cancers) and their surrogates at two university medical centers were randomized to an intensive nurse-directed discussion of the end-of-life decision control preferences of the patient (TAILORED) or a discussion of nutrition (CONTROL) 163 completed baseline interviews and underwent the intervention. Results Twelve patients died during follow-up and 137 dyads completed the study. Post-intervention, using all available data, TAILORED patients and surrogates became more likely to endorse mutual surrogate decision making, that is, a balance of their own wishes and what the surrogate thinks best (adjusted odds compared with baseline for patients = 1.78, P = 0.04 adjusted odds for surrogates = 2.05, P = 0.03). CONTROL patients became 40% less likely to endorse mutual surrogate decision making (P = 0.08), and CONTROL surrogates did not change significantly from baseline (adjusted odds = 1.44, P = 0.28). Stress levels decreased for TAILORED surrogates (impact of events scale = 23.1 ± 14.6 baseline, 20.8 ± 15.3 f/u, P = 0.046), but not for CONTROL (P = 0.85), and post-intervention stress was lower for TAILORED than CONTROL (P = 0.04). Surrogates' confidence was uniformly high at baseline and did not change. Caregiver burden (Zarit) increased from 12.5 ± 6.5 to 14.7 ± 8.1 for TAILORED (P < 0.01), while not changing for CONTROL, yet satisfaction with involvement in decision making was higher at follow-up for TAILORED than for CONTROL (71% vs. 52%, P = 0.03). Conclusion TAILORED patients and surrogates who completed the study adopted a more mutual decision-making style, balancing their own wishes with what the surrogate thinks would be best for them. Surrogates reported less stress and more satisfaction. Confidence was high at baseline and did not change. There was a modest increase in caregiver burden. These findings suggest that interventions like TAILORED might positively impact surrogate decision making.

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Investigating what works to support family carers of people with dementia: a rapid realist review

Introduction :Advances in longevity and medicine mean that many more people in the UK survive life-threatening diseases but are instead susceptible to life-limiting diseases such as dementia. Within the next 10 years those affected by dementia in the UK is set to rise to over 1 million, making reliance on family care of people with dementia (PWD) essential. A central challenge is how to improve family carer support to offset the demands made by dementia care which can jeopardise carers’ own health. This review investigates ‘what works to support family carers of PWD’. Methods: Rapid realist review of a comprehensive range of databases. Results: Five key themes emerged: (1) extending social assets, (2) strengthening key psychological resources, (3) maintaining physical health status, (4) safeguarding quality of life and (5) ensuring timely availability of key external resources. It is hypothesized that these five factors combine and interact to provide critical biopsychosocial and service support that bolsters carer ‘resilience’ and supports the maintenance and sustenance of family care of PWD. Conclusions: ‘Resilience-building’ is central to ‘what works to support family carers of PWD’. The resulting model and Programme Theories respond to the burgeoning need for a coherent approach to carer support.

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"There isn't an easy way of finding the help that's available." Barriers and facilitators of service use among dementia family caregivers: a qualitative study

Background: Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia. Method: Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis. Results: Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers’ beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an “expert” point of contact, and having beliefs about the caregiving role that enabled the use of services. Conclusion: Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.

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A qualitative study of carers' experiences of dementia cafes: a place to feel supported and be yourself

Background: Unpaid, informal carers or caregivers play an important role in supporting people living with dementia but the role can be challenging and carers themselves may benefit from support. Alzheimer’s, dementia or memory cafés are one such form of support . These cafés are usually provided in the voluntary sector and are a place where people with dementia and those supporting them, usually family carers, can meet with others in similar situations. Methods: Using semi-structured interviews, this qualitative study explored the experiences of 11 carers from five dementia cafés in and around London, England. Results: Thematic analysis resulted in the identification of four key themes. Cafés provide a relaxed, welcoming atmosphere where carers can go where they feel supported and accepted. Café attendance often brought a sense of normality to these carers’ lives. Carers and those they care for look forward to going and often enjoy both the activities provided and socialising with others. Other highlighted benefits included peer support from other carers, information provision and support from the volunteer café coordinators. Despite diversity in how the cafés were run and in the activities offered, there were many reported similarities amongst carers in the value ascribed to attending the cafés. Conclusions: Dementia cafés appear to be a valuable, perhaps unique form of support for carers giving them brief respite from their caring role. Future research incorporating mixed methods is needed to understand the perspectives of those living with dementia.

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Role of the Admiral Nurse in supporting a person with dementia and their family carer

Distress is commonly experienced by those caring for someone with dementia, and can occur whether the carer is living with a person with dementia, or supporting a person with dementia who lives alone to maintain their independence. It is essential for health and social care professionals to support family carers to balance their needs with those of the person they care for. However, this might be challenging because many influencing factors can affect these needs, and identifying the needs of the family carer and balancing them with the needs of the person with dementia is often complex. This article uses a case study to explore the role of one Admiral Nurse (KG) in supporting the main family carer of a person with dementia, and the model of reflection used by the Admiral Nurse to undertake critical thinking and analysis in relation to their role. 

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Clinicians' Views of Educational Interventions for Carers of Patients With Breathlessness Due to Advanced Disease: Findings From an Online Survey

Context: Carers' needs in advanced disease, and specifically in relation to breathlessness, are well evidenced. Publications on educational interventions for carers of patients with advanced disease that focus on symptoms are scarce and absent for breathlessness. Objectives: To establish current education provided by clinicians for carers of patients with breathlessness in advanced disease, views about educating carers about breathlessness, and relevant outcomes for a future randomized controlled trial of an educational intervention for carers. Methods: An online survey was completed by 365 clinicians: medical, nursing, and allied health professionals from primary care, hospital, and hospice. Descriptive statistics summarized respondent characteristics and survey responses, and the Chi-squared test was applied. Content analysis of free-text comments was conducted. Results: Most clinicians reported educating carers by educating patients at clinical contacts with patients. Carer involvement was largely an ‘add-on’; an active carer education strategy, where all carers were invited to attend, was not currently apparent. Clinicians endorsed the importance of educating carers about breathlessness through increasing carer confidence and/or control, helping patients' better self-manage breathlessness and potentially reducing admissions. Joint education with patients, giving practical advice, and strategies for helping patients were advised. To inform a future trial, clinicians identified improvement in patient outcomes, particularly patient quality of life as very important in enhancing clinician adoption of an educational intervention for carers. Conclusion: This survey revealed an appetite among clinicians for an educational intervention for carers of patients with breathlessness in advanced disease and provided important insights to underpin a future Phase II randomized controlled trial.

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Multimedia information intervention and its benefits in partners of the head and neck cancer patients

We aimed to investigate the levels of anxiety, depression, satisfaction with information provision and cancer‐related knowledge in partners of head and neck cancer (HNC) patients receiving a Multimode Comprehensive Tailored Information Package (MCTIP). A non‐randomised, controlled trial was conducted with partners of HNC patients recruited at two academic hospitals in Montreal. The Test participants received the MCTIP, while the Control participants received information in an ad hoc manner. All participants were evaluated using the Hospital Anxiety and Depression Scale (HADS), Satisfaction with Cancer Information Profile and a cancer knowledge questionnaire at baseline, and 3 and 6 months later. Data were analysed using descriptive statistics, t‐test and chi‐square test, and mixed model analysis to test the impact of the intervention. A total of 31 partners of HNC patients participated in this study and completed all the evaluations. The partners in the Test group experienced significantly lower levels of anxiety (= 0.001) and depression (P = 0.003) symptoms and were more satisfied (P = 0.002) with cancer information provided than partners in the Control group. Providing tailored information seems to have positive outcomes regarding anxiety, depression, and satisfaction in partners of HNC patients. Larger randomised studies are warranted to validate these effects.

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Achieving positive outcomes in complex cases: The Admiral Nurse Dementia Helpline (Innovative Practice)

Carer distress is an all too common factor in caring for someone with dementia, whether living with the person with dementia, or trying to maintain their independence when they are living alone. Providing support for families on many day-to-day issues with immediacy as and when they arise can be very difficult to achieve for services on the ground as carer need can be difficult to anticipate as well as the changing status of the person with dementia. This paper discusses the innovative role of managing complexity on a dementia telephone helpline manned by Admiral Nurses, specialist dementia nurses, in expertly supporting a family over a weekend where there were health concerns of a family member with dementia and a high level of carer distress.

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Psychosocial intervention for carers of people with dementia: What components are most effective and when? A systematic review of systematic reviews

Background: Psychosocial interventions for carers of people with dementia are increasingly recognized as playing an important role in dementia care. We aim to systematically review the evidence from existing systematic reviews of psychosocial interventions for informal carers of people with dementia. Methods: Thirty-one systematic reviews were identified; following quality appraisal, data from 13 reviews, rated as high or moderate quality, were extracted. Results: Well-designed, clearly structured multi-component interventions can help maintain the psychological health of carers of people with dementia and delay institutionalization of the latter. To be most effective, such interventions should include both an educational and a therapeutic component; delivery through a support group format may further enhance their effectiveness. Conclusions: Successful translation of evidence into practice in this area remains a challenge. Future research should focus on determining the most cost-effective means of delivering effective multi-component interventions in real-world settings; the cost-effective potential of technology-based interventions is considerable.

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Admiral Nursing: case management for families affected by dementia

Dementia series 28. The number of people with dementia is expected to increase globally. People with dementia are not affected in isolation and any intervention should also support their families and carers. Intervention is best delivered using a relationship-centred approach and a case management model. Case management has an established and successful history in supporting people with long-term conditions and those with a diagnosis of severe mental illness. This article, the last in this dementia series, discusses the Admiral Nursing case management approach to supporting patients and families affected by dementia, and provides recommendations for establishing a gold standard model of case management. 

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"Family matters": A systematic review of the evidence for family psychoeducation for major depressive disorder

The first aim of this systematic review was to evaluate the evidence for family psychoeducation (FPE) interventions for major depressive disorder (MDD). A second aim was to compare the efficacy of different modes of delivering face-to-face FPE interventions. Ten studies (based on nine distinct samples) were identified comprising four single-family studies, four multifamily studies, one single versus multifamily comparative study, and one peer-led, mixed-diagnosis study. Seven studies measured patient functioning and six reported positive outcomes. Six studies measured carer's well-being and four reported positive outcomes. Results provide preliminary evidence that FPE leads to improved outcomes for patient functioning and family-carer's well-being for persons with depression. The implications for future development and delivery ofFPE interventions for MDD are discussed.

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Information, connection and giving back: peer support outcomes for families following acquired brain injury in South Australia

This study aimed to identify the experiences and outcomes of participation in Families4Families Inc., a peer support network for families following acquired brain injury (ABI) in South Australia. Prior to the programme's launch in January 2013, new members of the network were invited to participate in pre- and post-programme phone interviews to identify benefits and limitations of the programme, and identify outcomes of participation. Fifty-five members (20 people with ABI 35 caregivers) participated in pre-programme interviews, with 34 repeating the final interview at the end of the 18-month pilot programme in June 2014. Interview transcripts were imported into Nvivo 10, where comments were analysed using inductive data-driven thematic analysis. Responses to rating questions were analysed using SPSS 20. Attendance records indicate that 39 of 55 participants were involved in the programme (12 active, 27 occasional) and 16 participants did not attend. Active attenders reported that they provided and received higher levels of support and information than those who attended only occasionally, including the significantly higher development of new friendships and contacts (P < 0.001). Statistically significant improvements in knowledge of services by both active and occasional attenders were reported (P = 0.014 and 0.026 respectively) with non-significant improvements for non-attenders. Qualitative analysis of interview transcripts revealed three major thematic benefits of involvement. These include the opportunity to access information, receive emotional support and give back to others in the network. Reasons for no longer participating in the network are explored. Peer support programmes can enable families to share experiences, knowledge, positive coping strategies, understanding of systems and develop new social networks that last beyond the programme. The continuing need for extended regional access is highlighted, with follow-up and referral to counselling and other services also critical to ensure members are appropriately supported through difficult personal experiences.

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The experiences of working carers of older people regarding access to a web-based family care support network offered by a municipality

Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge Experiencing ICT support as relevant in changing life circumstances and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs.

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Changing Moods: How Manual Tracking by Family Caregivers Improves Caring and Family Communication

Previous research on healthcare technologies has shown how health tracking promotes desired behavior changes and effective health management. However, little is known about how the family caregivers' use of tracking technologies impacts the patient-caregiver relationship in the home. In this paper, we explore how health-tracking technologies could be designed to support family caregivers cope better with a depressed family member. Based on an interview study, we designed a simple tracking tool called Family Mood and Care Tracker (FMCT) and deployed it for six weeks in the homes of 14 family caregivers who were caring for a depressed family member. FMCT is a tracking tool designed specifically for family caregivers to record their caregiving activities and patient's conditions. Our findings demonstrate how caregivers used it to better understand the illness and cope with depressed family members. We also show how our tool improves family communication, despite the initial concerns about patient-caregiver conflicts.

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Web-based health interventions for family caregivers of elderly individuals: A Scoping Review

Background: For the growing proportion of elders globally, aging-related illnesses are primary causes of morbidity causing reliance on family members for support in the community. Family caregivers experience poorer physical and mental health than their non-caregiving counterparts. Web-based interventions can provide accessible support to family caregivers to offset declines in their health and well-being. Existing reviews focused on web-based interventions for caregivers have been limited to single illness populations and have mostly focused on the efficacy of the interventions. We therefore have limited insight into how web-based interventions for family caregiver have been developed, implemented and evaluated across aging-related illness. Objectives: To describe: a) theoretical underpinnings of the literature; b) development, content and delivery of web-based interventions; c) caregiver usage of web-based interventions; d) caregiver experience with web-based interventions and e) impact of web-based interventions on caregivers’ health outcomes. Methods: We followed Arksey and O’Malley’s methodological framework for conducting scoping reviews which entails setting research questions, selecting relevant studies, charting the data and synthesizing the results in a report. Results: Fifty-three publications representing 32 unique web-based interventions were included. Over half of the interventions were targeted at dementia caregivers, with the rest targeting caregivers to the stroke, cancer, diabetes and general frailty populations. Studies used theory across the intervention trajectory. Interventions aimed to improve a range of health outcomes for caregivers through static and interactive delivery methods Caregivers were satisfied with the usability and accessibility of the websites but usage was generally low and declined over time. Depression and caregiver burden were the most common outcomes evaluated. The interventions ranged in their impact on health and social outcomes but reductions in perception of caregiver burden were consistently observed. Conclusions: Caregivers value interactive interventions that are tailored to their unique needs and the illness context. However, usage of the interventions was sporadic and declined over time, indicating that future interventions should address stage-specific needs across the caregiving trajectory. A systematic review has the potential to be conducted given the consistency in caregiver burden and depression as outcomes.

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Computer and telephone delivered interventions to support caregivers of people with dementia: a systematic review of research output and quality

Background: To assess the scope, volume and quality of research on the acceptability, utilisation and effectiveness of telephone- and computer-delivered interventions for caregivers of people living with dementia. Methods: Medline, EMBASE, CINAHL and Cochrane databases were searched (Jan 1990 – Dec 2016). Eligible papers were classified as data-based descriptive, measurement or intervention studies. Intervention studies were first categorised according to mode of delivery (e.g. telephone, computer); then assessed against the Effective Practice and Organisation of Care (EPOC) methodological criteria for research design. Impact on health-related outcomes; and the acceptability, feasibility and utilisation of interventions were also assessed. Results: The number of publications increased by 13% each year (p < 0.001). Half were descriptive studies (n = 92, 50%) describing caregiver views on acceptability, access or utilization of technology. The remainder (n = 89, 48%) reported on interventions designed to improve caregiver outcomes. Only 34 met EPOC design criteria. Interventions were delivered via computer (n = 10), multiple modalities (n = 9) or telephone (n = 15). Interventions that incorporated various elements of psycho-education, peer support, skills training and health assessments led to improvements in caregiver wellbeing. While largely acceptable, utilisation of computer-based interventions was variable, with use often decreasing over time. Conclusion: Interventions delivered via telephone and computer have the potential to augment existing dementia care. High-quality trials are required to make clear recommendations about the types of interventions that are most effective. Those that provide caregivers with: access to practical strategies to manage care of the person with dementia and their own wellbeing, advice and support from peers and/or clinicians; and that target the dyad should be explored.

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Would mobile health be a solution to rehospitalization?

It has been well‐established that social environmental factors can increase the risk of rehospitalization for people receiving home healthcare services. For caregivers who might be challenged to keep up with sometimes unfamiliar health monitoring tasks or to know when to seek help, mobile health technology offers the potential to enhance the skills of informal caregivers and to improve the communication between home and clinical care. This paper described our recent work to determine the usability, functionality, and style of interaction that would be needed to provide an effective and well‐accepted tool. Caregivers would likely adopt new mobile health tools, as long as care is taken to eliminate potential barriers, for example, by providing adequate training, and to include design aspects that enhance one's motivation to use a tool, such as by supporting autonomy and engagement.

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Effectiveness of psychoeducational interventions for family carers of people with psychosis: A systematic review and meta-analysis

Psychoeducational interventions for family carers of people with psychosis are effective for improving compliance and preventing relapse. Whether carers benefit from these interventions has been little explored. This systematic review investigated the effectiveness of psychoeducation for improving carers' outcomes, and potential treatment moderators. We searched for randomised controlled trials (RCTs) published in English or Chinese in eight databases. Carers' outcomes included wellbeing, quality of life, global morbidities, burden, and expressed emotion. Thirty-two RCTs were included, examining 2858 carers. Intervention duration ranged from 4 to 52weeks, and contact times ranged from 6 to 42hours. At post intervention, findings were equivocal for carers' wellbeing (SMD 0.103, 95% CI −0.186 to 0.392). Conversely, psychoeducation was superior in reducing carers' global morbidities (SMD −0.230, 95% CI −0.386 to −0.075), perceived burden (SMD −0.434, 95% CI −0.567 to −0.31), negative caregiving experiences (SMD −0.210, 95% CI −0.396 to −0.025) and expressed emotion (SMD −0.161, 95% CI −0.367 to −0.045). The lack of available data precluded meta-analysis of outcomes beyond short-term follow-up. Meta-regression revealed no significant associations between intervention modality, duration, or contact time and outcomes. Further research should focus on improving carers' outcomes in the longer-term and identifying factors to optimise intervention design.

  • Wellbeing and other outcomes of carers of individual with psychosis lack research
  • Psychoeducation improves carers' global morbidity, as a proxy measure to wellbeing.
  • Psychoeducation ameliorates caregiving-related outcomes, in particular burden.
  • 78% studies used group format, mean duration 20weeks, mean contact time 17h.
  • No significant associations identified between intervention factors and outcomes.
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Efficacy of a multi-component psychosocial intervention program for caregivers of persons living with neurocognitive disorders, Alexandria, Egypt: A randomized controlled trial

Background: Unlike other chronic diseases, dementia caregiving is associated with enormous psychological burden, which stresses the need for caregivers-directed psychosocial interventions. Aim: This randomized controlled trial (RCT) was conducted to evaluate the short-term efficacy of a multi-component psychosocial intervention program for informal caregivers of persons with neurocognitive disorders in Alexandria, Egypt. Methods: Informal caregivers (120) were randomly assigned into intervention and control groups. The intervention group (60) participated in a multi-component program of 8 sessions, including psycho-education, group cognitive-behavioral therapy, and group social support. Program primary outcomes were assessed after program termination (post-1), and three months later (post-2). Measured outcomes included caregivers' knowledge, depression and anxiety symptoms, and perceived burden. Results: Caregivers' depression, anxiety, and perceived burden demonstrated significant drop at post-1, and post-2 compared to the control group (P< 0.001). The intervention group showed significant negative absolute change on depression, anxiety, and perceived burden measures, while on the dementia-related knowledge measure, a significant positive absolute change was found at post-1, and post-2 (P< 0.001), in comparison to controls. All outcome measures recorded a large effect size; the highest was for knowledge (partial eta2 = 0.98), and the least was for perceived burden (partial eta2 = 0.71). Conclusion: A multi-component psychosocial intervention for caregivers of persons with neurocognitive disorders demonstrated a short-term efficacy in reducing their burden, depression, and anxiety, as well as improving caregivers' knowledge. However, further research is needed to investigate long-term efficacy of the intervention.

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Problem-solving in caregiver-counselling (PLiP Study): study protocol of a cluster randomized pragmatic trial

Background: Despite the positive evaluation of various caregiver interventions over the past 3 decades, only very few intervention protocols have been translated to delivery in service contexts. The purpose of this study is to train care counsellors of statutory long term care insurances in problem-solving and to evaluate this approach as an additional component in the statutory care counselling in Germany. Methods: A pragmatic cluster randomized controlled trial in which 38 sites with 58 care counsellors are randomly assigned to provide either routine counselling plus additional problem-solving for caregivers or routine counselling alone. The counsellor training comprises an initial 2-day training, a follow-up day after 4 months, and biweekly supervision contacts with a psychotherapist for 6 months over the phone. The agreed minimum counselling intensity is one initial face-to-face contact including a caregiver assessment and at least one telephone follow-up contact. Caregivers who are positively screened for significant strain in their role are followed up at 3 and 6 months after baseline assessment. Main outcome are caregivers’ depressive symptoms. Discussion: While it is unclear if the expected very low amount of additional counselling time is sufficient to yield any additional effects on caregiver depression, it is also unclear if the additional problem-solving component yields to synergies with routine counselling that is based on information and case management. There are different potential individual and organisational barriers to a consistent intervention delivery like gratification for participation, time for extra work or internal motivation to participate. Trial registration: (ISRCTN23635523)

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Interventions to support people with dementia and their caregivers during the transition from home care to nursing home care: A systematic review

Background During the transition of people with dementia from home to nursing home family caregivers often feel burdened. ObjectivesWe aimed to 1) identify interventions which support people with dementia and their caregivers in the transition from home care to nursing home care, 2) synthesize the evidence for efficacy of these interventions, and 3) examine whether the identified interventions have been systematically developed, evaluated and implemented according to the Medical Research Council guidance on complex interventions. Design A systematic review of randomised controlled trials was conducted according to the recommendations specified in the Cochrane Handbook for Intervention Reviews. The review protocol was registered in PROSPERO (2015: CRD42015019839). Reporting follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses: the PRISMA statement. Data sourcesMEDLINE, CENTRAL, PsycINFO, CINAHL, OTseeker, and PEDro, were searched. Other sources included Google Scholar, and ALOIS. Review methodsTwo reviewers independently assessed the eligibility of the articles. Data extraction was performed by one reviewer and verified independently by another. The Cochrane Risk of Bias tool was used for critical appraisal. Development and evaluation of the identified interventions were assessed, taking the Medical Research Council guidance into account. Review findings were synthesized narratively. Results The search yielded 1278 records. Five studies were included, all conducted in the United States (4 RCTs and 1 cRCT with a total of 695 participants). The psychosocial interventions were individual and family counseling via telephone or ad hoc all of which addressed only informal caregivers. The intervention components, content and mode of delivery differed widely with inconsistent results. Significant intervention effects were found for the reduction of caregivers’ depressive symptoms, burden, feeling of guilt, emotional distress, overload, and interactions with staff. Other outcomes, i.e. stress, placement adaptation, role overload, and role captivity, were not statistically significantly affected. The assessment for bias risk across studies varied from moderate to low. Only two studies tested the feasibility of the intervention before full scale evaluation, none evaluated the implementation process according to the Medical Research Council framework. Conclusions We identified only a few studies with heterogeneous outcomes evidence regarding the effectiveness of psychosocial interventions is thus insufficient. Further research is needed focusing on the development and evaluation of complex psychosocial interventions and more well-designed RCTs with larger sample sizes based on a rigorous methodology. Reporting on feasibility and implementation processes of interventions should be guaranteed, since it is crucial to evaluate transferability across care settings.

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Am I My Brother’s Keeper? Moral Dimensions of Informal Caregiving in a Neoliberal Society

Within the current Dutch policy context the role of informal care is revalued. Formal care activities are reduced and family and friends are expected to fill this gap. Yet, there is little research on the moral ambivalences that informal care for loved ones who have severe and ongoing mental health problems entails, especially against the backdrop of neoliberal policies. Giving priority to one’s own life project or caring for a loved one with severe problems is not reconciled easily. Using a case study we illustrate the moral ambivalences that persons may experience when they try to shape their involvement and commitment when a relative is in need. The case comes from a research project which explores whether it is possible to reduce coercive measures in psychiatry by organizing a Family Group Conference. The purpose of the article is to explore what theoretical concepts such as ‘communities of fate’, ‘communities of choice’ and ‘personal communities’ add in understanding how persons shape their involvement and commitment when a family member experiences recurrent psychiatric crises.

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Caring for carers in community pharmacy

'...much of the research on intervention types focuses on carers for people with a specific condition, eg dementia, or involves simple interventions, eg a focus on goal setting. This presents a significant research gap; what are the interventions that have been delivered in any primary care setting, for a variety of carer types?'

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Implementation of the REACH model of dementia caregiver support in American Indian and Alaska Native communities

The Resources for Enhancing Alzheimer's Caregivers Health in the VA (REACH VA) dementia caregiving intervention has been implemented in the VA, in community agencies, and internationally. As identified in the 2013 and 2015 National Plan to Address Alzheimer's Disease, REACH is being made available to American Indian and Alaska Native communities. Implementation activities are carried out by local Public Health Nursing programs operated by Indian Health Service and Tribal Health programs, and Administration for Community Living/Administration on Aging funded Tribal Aging program staff already working in each community. The implementation is described using the Fixsen and Blasé implementation process model. Cultural, community, health system, and tribe-specific adaptations occur during the six implementation stages of exploration and adoption, program installation, initial implementation, full operation, innovation, and sustainability. Adaptations are made by local staff delivering the program. Implementation challenges in serving AI/AN dementia caregivers include the need to adapt the program to fit the unique communities and the cultural perceptions of dementia and caregiving. Lessons learned highlight the importance of using a clinically successful intervention, the need for support and buy-in from leadership and staff, the fit of the intervention into ongoing routines and practices, the critical role of modifications based on caregiver, staff, and organization needs and feedback, the need for a simple and easily learned intervention, and the critical importance of community receptivity to the services offered.

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End-of-Life care in a community garden: Findings from a Participatory Action Research project in regional Australia

This article presents findings from research that explored how a community garden might function as a place of end-of-life and bereavement support. Adopting Participatory Action Research (PAR) methods, and informed by Third Place theory and notions of therapeutic landscape, creative consultations were held in the Garden and people's homes. The findings provide insights into the nature of informal care as it is played out in the liminal garden space, between home and institution. The results illuminate the therapeutic landscape of community gardens, and contribute new understandings to the fields of PAR, health geography and end-of-life care.

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Improving Stroke Caregiver Readiness for Transition From Inpatient Rehabilitation to Home

Purpose: As the population ages, older adults are more often living with functional limitations from chronic illnesses, such as stroke, and require assistance. Because stroke occurs suddenly, many stroke family caregivers in the United States are unprepared to assume caregiving responsibilities post-discharge. Research is limited on how family members become ready to assume the caregiving role. In this study, we developed a theoretical model for improving stroke caregiver readiness and identifying gaps in caregiver preparation. Design and Methods: We interviewed 40 stroke family caregivers caring for 33 stroke survivors during inpatient rehabilitation and within 6 months post-discharge for this grounded theory study. Data were analyzed using dimensional analysis and constant comparative techniques. Results: Caregivers identified critical areas where they felt unprepared to assume the caregiving role after discharge from inpatient rehabilitation. Steps to improve preparation include (a) conducting a risk assessment of the patient and caregiver; (b) identifying and prioritizing gaps between the patient’s needs and caregiver’s commitment and capacity; and (c) developing a plan for improving caregiver readiness. Implications: The model presented provides a family-centered approach for identifying needs and facilitating caregiver preparation. Given recent focus on improving care coordination, care transitions, and patient-centered care to help improve patient safety and reduce readmissions in this population, this research provides a new approach to enhance these outcomes among stroke survivors with family caregivers.

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Connecting Those That Care: Designing for Transitioning, Talking, Belonging and Escaping

Care provision in many nations increasingly relies on the work of informal, or non-professional, carers. Often these carers experience substantial disruptions and reductions to their own sociality, weakened social support networks and, ultimately, a heightened risk of social isolation. We describe a qualitative study, comprised of interviews, design workshops and probes, that investigated the social and community support practices of carers. Our findings highlight issues related to becoming and recognising being a carer, and feelings of being ignored by, and isolated from, others. We also note the benefits that sharing between carers can bring, and routes to coping and relaxing from the burdens of care. We conclude with design considerations for facilitating new forms of digitally mediated support that connect those that care, emphasising design qualities related to transitioning, talking, belonging and escaping.

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Pilot testing of the "First You Should Get Stronger" program among caregivers of older adults with dementia

Objective: In this study, randomized controlled interventional study pattern was used to examine the effects of the “First You Should Get Stronger” program on the caregiving burden and healthy life style behavior of caregivers of dementia patients. Methods: “Zarit Caregiver Burden Scale” and “Healthy Life Style Behavior Scale” were used. The study was completed with 40 caregivers in total with 20 in the intervention group and 20 in the control group. A statistically significant difference was determined between the “Zarit Caregiving Burden Scale” and “Healthy Life Style Behavior Scale” score averages of the intervention group that participated in the “First You Should Get Stronger” program in comparison with those of the control group. Results: It is important for the healths of caregivers to include similar programs for the caregivers of dementia patients in continuous and regular applications. Discussion: The results highlight the importance of the “First You Should Get Stronger”program significantly decreased the caregiving burden and significantly developed the healthy lifestyle behaviors of caregivers in the intervention group. Since dementia is a difficult neurological syndrome with patients cared at home, it generally wears out the caregivers significantly. It is suggested that the nurses and healthcare professionals working with dementia patients are evaluated separately and that they carry out caregiving applications within the scope of the “First You Should Get Stronger” program.

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Mindfulness training for psychological stress in family caregivers of persons with dementia: a systematic review and meta-analysis of randomized controlled trials

Caring for a relative with dementia is extremely challenging; conventional interventions may not be highly effective or easily available on some occasions. This study aimed to explore the efficacy of mindfulness training in improving stress-related outcomes in family caregivers of people with dementia using a meta-analytic review. We searched randomized controlled trials (RCT) through April 2017 from five electronic databases, and assessed the risk of bias using the Cochrane Collaboration tool. Seven RCTs were included in our review. Mindfulness interventions showed significant effects of improvement in depression (standardized mean difference: -0.58, [95% CI: -0.79 to -0.37]), perceived stress (-0.33, [-0.57 to -0.10]), and mental health-related quality of life (0.38 [0.14 to 0.63]) at 8 weeks post-treatment. Pooled evidence did not show a significant advantage of mindfulness training compared with control conditions in the alleviation of caregiver burden or anxiety. Future large-scale and rigorously designed trials are needed to confirm our findings. Clinicians may consider the mindfulness program as a promising alternative to conventional interventions.

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Long-term effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure: a randomized controlled trial

Background: Partners of patients with heart failure provide both practical and emotional support. Many partners assume caregiving responsibilities without being aware of the burden related with this role. Objective: Our work has established that a psycho-educational intervention has benefits at 3, but not at 12 months for patients with heart failure. Further we had not described the long-term effects in caregivers. This study aimed to determine the 24-months effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure and study factors associated with a change in caregiver burden. Design: A randomized controlled study design, with a follow-up assessment after 24 months. Setting and participants: Partners to patients with heart failure were recruited from two hospitals in the southeast of Sweden. Intervention: A three session nurse-led psycho-educational program was tested and included psychosocial support to maintain the partners’ physical and mental functions, and perceived control. Several instrument were used to measure caregiver burden, perceived control, physical and mental health, depression and morbidity. Results: One hundred fifty-five partners were included. There were no significant differences in any index of caregiver burden or morbidity among the partners in the intervention and control groups after 24 months. Overall, the mean total caregiver burden was found to be significantly increased compared to baseline (36 ± 12 vs 38 ± 14, p < 0.05). A younger partner, less comorbidity, higher levels of perceived control, better physical health and less symptoms of depression in patients, and better mental health in the partners were factors associated with absence of increased caregiver burden over time. Discussion and conclusion: Our intervention did not significantly decrease caregiver burden or morbidity. Over time, several aspects of burden increased in both groups. To improve outcomes, individualized and targeted interventions might be beneficial. Registered on ClinicalTrials.gov Identifier NCT02398799.

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A Systematic Review and Meta-Analysis Comparing Carer Focused and Dyadic Multicomponent Interventions for Carers of People With Dementia

Objective: The aim of this study was to compare the efficacy of two approaches: multicomponent interventions that focus on working with the carer and dyadic interventions that work with both the carer and the person with dementia. Method: A systematic review involving a search of Medline, EMBASE, and PsycINFO in October 2015 was performed. Randomized controlled trials involving carers of people with dementia and comparing multicomponent interventions with usual care were included. Results: Pooling of all studies demonstrated that multicomponent interventions can reduce depressive symptoms, improve quality of life, reduce carer impact, and reduce behavioral and psychological symptoms of dementia as well as caregiver upset with these symptoms. We were unable to find a significant difference in the effects of dyadic interventions in comparison with carer focused interventions for these outcomes. Discussion: Although effect sizes associated with intervention are small, multicomponent interventions are relatively inexpensive to deliver, acceptable, and widely applicable.

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The Effects of the MORE Wisdom Resources on Spousal Caregivers' Life Satisfaction: An Application of the Resilience Model

OBJECTIVES: Models of resilience suggest that psychosocial resources and their interactions facilitate resilience while experiencing life challenges of caregiving. The MORE wisdom resources (sense of Mastery, Openness to experience, Reflective attitude, and Emotion regulation) have been suggested as possible personal resources of resilience that predict positive health outcomes of caregivers. Applying a model of resilience, this study examined the direct and indirect effects of the three of the MORE wisdom resources (sense of Mastery, Openness to experience, and Emotion regulation) on caregiving spouses' life satisfaction and perceived physical health. METHODS: Using data from the survey of Midlife in the United States, caregiving spouses (n = 114) and matched non-caregivers (n = 114) were included. We compared the direct and indirect effects of the wisdom resources on life satisfaction and physical health between the two groups. RESULTS: The simple mediation model proposed in 2008 by Preacher and Hayes revealed that openness to experience was directly associated with better life satisfaction among caregiving spouses. Sense of mastery and emotion regulation had indirect effects on life satisfaction through spousal support. The effects the wisdom resources on caregiving spouses' perceived physical health were not found. CONCLUSIONS: This study demonstrated that the three of the MORE wisdom resources are possible personal resilience factors influencing life satisfaction among caregiving spouses. Moreover, the study showed how spousal support mediates the relationship between the wisdom resources and life satisfaction.CLINICAL IMPLICATIONS: Interventions aiming to increase life satisfaction among caregiving spouses should focus on in reasing both personal and environmental resources and strengthening the relationship of the caregiver and care recipien

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Components and Outcomes of Internet-Based Interventions for Caregivers of Older Adults: Systematic Review

Background: When trying to access interventions to improve their well-being and quality of life, family caregivers face many challenges. Internet-based interventions provide new and accessible opportunities to remotely support them and can contribute to reducing their burden. However, little is known about the link existing between the components, the use of behavior change techniques, and the outcomes of these Internet-based interventions.

Objective: This study aimed to provide an update on the best available evidence about the efficacy of Internet-based interventions for caregivers of older adults. Specifically, the components and the use of behavior change techniques and how they impact on the efficacy of the intervention were sought.

Methods: A systematic review searched primary source studies published between 2000 and 2015. Included studies were scored with a high level of evidence by independent raters using the GRADE criteria and reported caregiver-specific outcomes about interventions delivered through the Internet for caregivers of people aged 50 years and older. A narrative synthesis identified intervention components (eg, content, multimedia use, interactive online activities, and provision of support), behavior change techniques, and caregiver outcomes (eg, effects on stressors, mediators, and psychological health). The risk of bias within the included studies was assessed.

Results: A total of 2338 articles were screened and 12 studies describing 10 Internet-based interventions were identified. Seven of these interventions led to statistically significant improvements in caregiver outcomes (eg, reducing depression or anxiety, n=4). These efficacious interventions used interactive components, such as online exercises and homework (n=4) or questionnaires on health status (n=2) and five of them incorporated remote human support, either by professionals or peers. The most frequently used behavior change techniques included in efficacious interventions were provision of social support (n=6) and combinations of instructions to guide behavior change and barrier identification (n=5). The design and aim of the included studies did not permit determining exactly which component and/or behavior change technique was more efficacious in producing positive outcomes in caregivers. The risk for selection bias was low for all the studies, and low to high for performance, detection, and attrition biases.

Conclusions: In sum, Internet-based interventions that incorporate professional and social support, and provide instructions to change behavior and problem solve in an interactive manner appear to lead to positive outcomes in caregivers. Studies isolating the specific effect of components are needed to improve our understanding of the underlying mechanism of action.

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Interconnections Between My Research and Experience as a Caregiver: Impacts on Empirical and Personal Perspectives

Shortly after I received my first R01 grant to study the health effects of caregiving, my sister and I became caregivers to our father. For the next 13 years, we helped him with activities of daily living (ADLs), accompanied him to doctors’ appointments, arranged for home health care, and finally for home hospice. At first, I was able to connect our assistance with ADLs, frustration with coordinating his care, and our psychological stress with my epidemiologic studies. My familiarity with the language of caregiving and long-term care helped us to navigate the medical and home care systems, and to be advocates for my father. However, as my father’s health declined, I felt an increasing disconnect between my research and my experience: communicating with physicians and other care providers, responding to crises and conversations with my sister about placing our father in a nursing home were greater sources of stress than my father’s dementia. These discrepancies made me realize that I could help caregivers more by helping them to negotiate these challenges than through performing quantitative research. So I enrolled in a counseling psychology program. My manuscript will chronicle the ways that caregiving changed me how my professional work did and did not help me as a caregiver how the developmental and family theories that I am learning in my psychology classes have expanded my understanding of stressors facing adult child caregivers, and how this entire experience ties into generativity and Third Chapter careers that build on midlife experiences.

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Dementia case management through the eyes of informal carers: A national evaluation study

This paper focuses on the evaluation of dementia case management in the Netherlands, as well as factors associated with positive evaluations of informal caregivers. A survey was completed by 554 informal carers. The majority of the informal carers were older (69% was 55+), and female (73%), and often concerned the partner or adult children of the person with dementia. Eighty percent indicated that the contact with the case manager facilitated their role as informal carer, while 95% or more stated that the case manager showed sufficient understanding, allowed enough space to decide together on how to approach problems in the care, took time to listen to their story, gave sufficient attention to and showed interest in their relative, took their schedule into account and/or kept appointments. Contrary to the expectations, multilevel analyses did not show association between informal caregivers’ care burden and the evaluation of case management. Neither were the period living with dementia and the number of personal contacts with the case manager associated with the evaluations of informal caregivers. However, being the partner of the patient was significantly related (p < 0.05) to a positive overall evaluation by informal carers. These results suggest that sufficient case management resources should be offered and targeted especially towards partners of people with dementia.

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Knowledge, help-seeking and efficacy to find respite services: an exploratory study in help-seeking carers of people with dementia in the context of aged care reforms

Research highlights the need for carers of people with dementia to acquire relevant and timely information to assist them to access appropriate respite services. Unfortunately, negative experiences of information-seeking can create additional stress for carers and contribute to delays in up-take, or not using respite services at all. Methods: Cross-sectional survey data was collected from a convenience sample of n = 84 carers of older people with dementia living in the Illawarra-Shoalhaven region of NSW, Australia. We assessed knowledge, attitudes, information seeking behaviours, and unmet need for respite services in 2016, following national aged care reforms. Results:  Over the previous 12 months, 86% of carers sought respite service information. The majority (73%) of all carers reported an unmet need for respite services, and were relying on personal networks to provide support for respite information. Few utilised the new government gateway ‘My Aged Care’ phone line (11%) or website (25%). However, 35% used a pre-existing helpline to access short term or emergency respite. We found a preference for interpersonal information sources, including local doctor (65%), professionally and volunteer led carer support groups (49%), and family and friends (46%). Those using four or more information sources showed higher capacity to name local respite services. Respite service information seekers were more likely to be caring for someone with behavioural problems, to have received assistance to access services, and to have used respite services in the past 3 to 6 months. Conclusions: New reforms in the Australian aged care sector have not adequately responded to the needs of carers of people with dementia for respite service information and support. Wider, community-based messaging promoting positive service options and the provision of active personal support is required to address the unmet need for respite in carers of people with dementia.

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Understanding the social and emotional needs of carers: final report

This rapid literature review was commissioned by NSW Family & Community Services on behalf of the NSW Carers Advisory Council. The review aims to contribute to the evidence to help the Council to better understand the social and emotional health and wellbeing of the carer population and the specific issues and their impact in the carer population. Carers provide ongoing unpaid support to people who need it because of their disability, chronic illness, mental ill-health, dementia or frail age.The primary focus of this review is on evaluations of interventions or programs to support the social and emotional wellbeing of carers. The review also describes the key issues identified in the literature and what is known about the social and emotional health and wellbeing in the carer population. As this is a rapid literature review, it focuses on key issues, themes and solutions identified and may not be comprehensive or exhaustive

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The effectiveness of creating an online life story book on persons with early dementia and their informal caregivers: a protocol of a randomized controlled trial

Background: Dementia has a high burden for patients, informal caregivers and society. Given changes in care systems, more persons with dementia will live longer at home. However, living at home (with dementia) with a good quality of life is not easy to achieve. Dementia is often accompanied by neuropsychiatric symptoms like apathy, agitation, depression, and anxiety, which have a negative impact on quality of life. Whereas cognitive deterioration can hardly be influenced, it is possible to reduce neuropsychiatric symptoms. As autobiographical memories remain intact for a relatively long time in dementia, reminiscence interventions can promote feelings of pleasure and trust. The Online Life Story Book (OLSB) allows to digitally share memories (stories, pictures, video or audio fragments). The main objective is to study the effects of the OLSB on neuropsychiatric symptoms. The study has four secondary objectives: 1) to study the effectiveness of the intervention on the burden and quality of life of the primary informal caregiver 2) to provide a preliminary health-economic evaluation 3) to study the (time to) nursing home admittance as a longer term effect 4) to provide a process evaluation. Methods and design: A randomized controlled trial with individual randomization to one of two conditions is conducted: 1) intervention “Online Life Story Book”; 2) control condition (care as usual). Participants are persons with early dementia and their primary caregivers. In the intervention OLSB, a trained volunteer guides the participants through the process of putting together a timeline of their lives during 5 meetings within a period of 8-10 weeks. To assess the effects of the intervention on the primary outcome, neuropsychiatric symptoms, the Neuropsychiatric Inventory (NPI) will be assessed at three time points: before the intervention (baseline, T0), 3 months (T1) and 6 months (T2) post baseline.Discussion: When proven effective, the Online Life Story Book can be a valuable addition to the existing provision of care for persons with dementia and their informal caregivers. Trial registration: This study has been approved by the Twente Medical Ethics Committee under the file number p16-04 (Dutch Trial Register: NTR5939, date of registration: 14 March 2016).

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Consequences of clinical case management for caregivers: a systematic review

OBJECTIVE: Informal caregivers are deeply involved in the case management process. However, little is known about the consequences of such programs for informal caregivers. This systematic literature review, reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement, addressed the consequences of clinical case management programs, whether positive or negative, for caregivers of frail older persons or persons with dementia. METHODS: We systematically identified and analyzed published randomized trials and quasi-experimental studies comparing case management programs to usual care, which discussed outcomes concerning caregivers. RESULTS: Sixteen studies were identified, and 12 were included after quality assessment. Seven identified at least one positive result for caregivers, and no negative effect of case management has been found. Characteristics associated with positive results for caregivers were a high intensity of case management and programs specifically addressed to dementia patients. CONCLUSIONS: Despite the numerous methodological challenges in the assessment of such complex social interventions, our results show that case management programs can be beneficial for caregivers of dementia patients and that positive results for patients are achieved without increasing caregivers' burden. 

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Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study

Background/Aims: Despite reporting high levels of burden, supporters of people with young onset dementia (YOD) underuse formal community services. Previous quantitative studies in YOD are of limited utility in guiding service design because they did not consider important contextual barriers to service use. The aim of this study was to identify all relevant barriers and describe the service features considered most important to improving uptake by people with YOD and their supporters.

Methods: Eighty-six people with consensus-confirmed YOD (mean onset age 55.3 years) and/or their primary supporter participated in quantitative interviews, and 50 also participated in one of seven qualitative focus groups. Interview participants reported levels of community service use and reasons for non-use, functional impairment, behavioural and psychological symptoms, supporter burden, social network, and informal care provision. Focus group participants expanded on reasons for non-use and aspects of an ideal service.

Results: Although at least one community service was recommended to most participants (96.8%), 66.7% chose not to use one or more of these. Few of the clinical or demographic factors included here were related to service use. Qualitative analyses identified that lack of perceived need, availability, and YOD-specific barriers (including ineligibility, unaffordability, lack of security, lack of childcare) were commonly reported. Five aspects of an ideal service were noted: unique, flexibile, affordable, tailored, and promoting meaningful engagement.

Conclusion: People with YOD and their families report that formal community services do not meet their personal and psychological needs. Researchers can provide ongoing assessment of program feasibility, suitability, and generalisability.

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Peer-Delivered Models for Caregivers of Children and Adults with Health Conditions: A Review

Peer-delivered health models may hold important benefits for family members, yet their prevalence, components, and outcomes are unknown. We conducted a review of peer-delivered services for families of children and adults with serious health problems. Studies of interventions published between 2000 and 2016 were included if the intervention contained a component for family members. Of 88 studies that were assessed for their eligibility, five met criteria. Familial components included information about the health condition and management, strategies to enhance communication and stress, and the provision of emotional support. Outcomes were largely favorable, including reductions in distress and symptoms of trauma, enhanced quality of life, and positive perceptions of the peer therapeutic alliance. Peer-delivered services for family members may hold important benefits to caregivers however, the research base remains thin. A research agenda to develop and examine these models is discussed.

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Informal caregivers' views on the division of responsibilities between themselves and professionals: A scoping review

This scoping review focuses on the views of informal caregivers regarding the division of care responsibilities between citizens, governments and professionals and the question of to what extent professionals take these views into account during collaboration with them. In Europe, the normative discourse on informal care has changed. Retreating governments and decreasing residential care increase the need to enhance the collaboration between informal caregivers and professionals. Professionals are assumed to adequately address the needs and wishes of informal caregivers, but little is known about informal caregivers' views on the division of care responsibilities. We performed a scoping review and searched for relevant studies published between 2000 and September 1, 2016 in seven databases. Thirteen papers were included, all published in Western countries. Most included papers described research with a qualitative research design. Based on the opinion of informal caregivers, we conclude that professionals do not seem to explicitly take into account the views of informal caregivers about the division of responsibilities during their collaboration with them. Roles of the informal caregivers and professionals are not always discussed and the division of responsibilities sometimes seems unclear. Acknowledging the role and expertise of informal caregivers seems to facilitate good collaboration, as well as attitudes such as professionals being open and honest, proactive and compassionate. Inflexible structures and services hinder good collaboration. Asking informal caregivers what their opinion is about the division of responsibilities could improve clarity about the care that is given by both informal caregivers and professionals and could improve their collaboration. Educational programs in social work, health and allied health professions should put more emphasis on this specific characteristic of collaboration.

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What is Important in E-health Interventions for Stroke Rehabilitation? A Survey Study among Patients, Informal Caregivers and Health Professionals

Incorporating user requirements in the design of e-rehabilitation interventions facilitates their implementation. However, insight into requirements for e-rehabilitation after stroke is lacking. This study investigated which user requirements for stroke e-rehabilitation are important to stroke patients, informal caregivers, and health professionals. The methodology consisted of a survey study amongst stroke patients, informal caregivers, and health professionals (physicians, physical therapists and occupational therapists). The survey consisted of statements about requirements regarding accessibility, usability and content of a comprehensive stroke e-health intervention (4-point Likert scale, 1=unimportant/4=important). The mean with standard deviation was the metric used to determine the importance of requirements. Patients (N=125), informal caregivers (N=43), and health professionals (N=105) completed the survey. The mean score of user requirements regarding accessibility, usability and content for stroke e-rehabilitation was 3.1 for patients, 3.4 for informal caregivers and 3.4 for health professionals. Data showed that a large number of user requirements are important and should be incorporated into the design of stroke e-rehabilitation to facilitate their implementation.

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Unravelling Swedish informal caregivers' Generalised Resistance Deficits

In salutogenic theory, individual/contextual, immaterial/material characteristics enabling movements towards health are labelled Specific and Generalised Resistance Resources, SRRs/GRRs, and characteristics counteracting such movements Specific and Generalised Resistance Deficits, SRDs/GRDs. The aim of this paper was to present SRDs and GRDs described by caregivers as stemming from themselves and their care recipient. Guided by salutogenic theory, an explorative design was used to collect data through interviews with 32 Swedish informal caregivers. During the theory-driven analysis, SRDs were unravelled using within-case approaches. To be able to unite them as GRDs across cases, a serviceable GRD definition was developed from the existing theoretical GRR definition. In findings, SRDs are visualised in citations and GRDs described in detail. Caregivers' experiences of SRDs/GRDs are presented as themes: 'Experiencing personal deficiencies', when stemming from themselves; and 'Struggling with an uncooperative co-worker', when stemming from their care recipients. Findings indicate that if these themes dominate a caregiver's view of life, she/he seems to have reached the 'breaking point' when caregiving ends due to lack of usable SRRs/GRRs. To prolong the time until this occurs, support, making otherwise unusable SRRs/GRRs usable, is needed. When designing this type of 'salutogenic' support, it seems essential to involve the target group (e.g. caregivers, care recipients), to ascertain what their SRRs/GRRs and SRDs/GRDs may consist of. Such knowledge regarding SRRs/SRDs could be used to design individualised support, and regarding GRRs/GRDs to design generalised support at group level. This study suggests how such new knowledge regarding resistance resources and deficits could be acquired.

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Facilitators and barriers to adaptive implementation of the Meeting Centers Support Program (MCSP) in three European countries; the process evaluation within the MEETINGDEM study

Background: In the MEETINGDEM project, the Meeting Centers Support Program (MCSP) was adaptively implemented and evaluated in three European countries: Italy, Poland, and the United Kingdom. The aim of this study was to investigate overall and country-specific facilitators and barriers to the implementation of MCSP in these European countries.; Methods: A qualitative multiple case study design was used. Based on the theoretical model of adaptive implementation, a checklist was composed of potential facilitators and barriers to the implementation of MCSP. This checklist was administered among stakeholders involved in the implementation of MCSP to trace the experienced facilitators and barriers. Twenty-eight checklists were completed.; Results: Main similarities between countries were related to the presence of suitable staff, management, and a project manager, and the fact that the MCSP is attuned to needs and wishes of people with dementia and informal caregivers. Main differences between countries were related to: communication with potential referrers, setting up an inter-organizational collaboration network, receiving support of national organizations, having clear discharge criteria for the MCSP and continuous PR in the region.; Conclusion: The results of this study provide insight into generic and country specific factors that can influence the implementation of MCSP in different European countries. This study informs further implementation and dissemination of MCSP in Europe and may also serve as an example for the dissemination and implementation of other effective psychosocial support interventions for people with dementia and their informal caregivers across and beyond Europe.

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A self-care, problem-solving and mindfulness intervention for informal caregivers of people with motor neurone disease: A pilot study

Background: Informal caregivers of people with motor neurone disease (MND) take on an extensive role. Caregivers are at increased risk of experiencing psychological distress and burden, yet, there is a lack of intervention programmes to support them.; Aim: The aim of this study was to investigate the feasibility and acceptability of a therapeutic group intervention promoting self-care, problem-solving and mindfulness to informal caregivers of people with MND.; Design: Pilot study that utilised a one-arm pre- and post-design. Acceptability of the intervention was assessed 2 weeks post intervention with a questionnaire designed specifically for this study. Feasibility was assessed with consent, adherence and reasons for non-participation, refusal and attrition. Participants completed baseline and follow-up (6-week post intervention) questionnaires for psychological morbidity, burden, problem-solving, mindfulness and preparedness. Settings/participants: Caregivers of people with a diagnosis of MND within the past 12 months who were 18 years or older; who could speak, read and write in English and who were attending a progressive neurological diseases clinic were eligible.; Results: A total of 13 caregivers participated in one of three group intervention sessions which were focused on self-care, problem-solving and mindfulness. The intervention appeared to be feasible and acceptable. All participants stated that they would recommend the intervention to others. The group format appeared to be highly valued. There was no significant change in measures between pre-intervention and 6 weeks post intervention.; Conclusion: This pilot serves as an initial step for examining interventions for MND caregivers, with the hope of identifying effective, efficient and sustainable strategies to best support this group.

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The Carer Support Needs Assessment Tool (CSNAT)

The CSNAT is an evidence-based tool that facilitates tailored support for family members and friends (carers) of adults with long term life-limiting conditions. The research underpinning this tool was informed by carers and practitioners.

It comprises 14 domains (broad areas of need) in which carers commonly say they require support. Carers may use this tool to indicate further support they need both to enable them to care for their family member or friend and to preserve their own health and well-being within their caregiving role.

It is short and simple to use for both carers and practitioners. Online training is also available

The online training can be accessed free of charge and allows health and social care practitioners to access Continuing Professional Development (CPD) accredited training in how to implement The CSNAT Approach, in order to best meet the needs of carers of patients with life-limiting illness. The training also addresses key organisational issues to be considered in planning, piloting and sustaining implementation in the longer term.

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Involving Caregivers of People With Dementia to Validate Booklets on Food-Related Activities: A Qualitative Think-Aloud Study

This study is the first to explore informal dementia caregivers' perceptions and outlook on written materials about all food-related processes: shopping, food preparation, and eating. The aim of the study was to develop and evaluate the content, format, and usefulness of two separate booklets (one newly developed and one existing) on food-related processes. Twenty dementia caregivers were provided with one of the two booklets, and a Think-Aloud method was used to gather information about their views on the booklets. The findings indicated that incorporating all three food processes in a new booklet could be beneficial for the participant. Shopping, purchasing food, driving, and dangers in the kitchen were addressed only in the developed booklet, and participants regarded them as important and useful areas to address. Therefore, this study has shown that tailored information may enhance caregivers' confidence and support them in making decisions to help them adapt to food-related changes.

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Health economic evaluations of non-pharmacological interventions for persons with dementia and their informal caregivers: a systematic review

Background: This systematic review aims to review the literature on trial-based economic evaluations of non-pharmacological interventions directly targeted at persons with dementia as well as persons with mild cognitive impairment and their respective caregivers.; Methods: A systematic literature research was conducted for the timeframe from 2010 to 2016 in the following databases: Centre for Reviews and Dissemination, EconLit, Embase, Cochrane Library, PsycINFO and PubMed. Study quality was assessed according to the Drummond criteria.; Results: In total sixteen publications were identified. Health economic evaluations indicated the cost-effectiveness of physical exercise interventions and occupational therapy. There was also evidence to suggest that psychological and behavioral therapies are cost-effective. Health economic studies investigating psychosocial interventions mainly targeted towards informal caregivers showed inconsistent results.; Conclusions: Due to the increasing prevalence of dementia non-pharmacological interventions and their health economic impact are of increasing importance for health care decision-makers and HTA agencies.

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Novel technology as platform for interventions for caregivers and individuals with severe mental health illnesses: A systematic review

Background: Severe mental illnesses (SMIs) have been found to be associated with both increases in morbidity-mortality, need for treatment care in patients themselves, and burden for relatives as caregivers. A growing number of web-based and mobile software applications have appeared that aim to address various barriers with respect to access to care. Our objective was to review and summarize recent advancements in such interventions for caregivers of individuals with a SMI.; Methods: We conducted a systematic search for papers evaluating interactive mobile or web-based software (using no or only minimal support from a professional) specifically aimed at supporting informal caregivers. We also searched for those supporting patients with SMI so as to not to miss any which might include relatives.; Results: Out of a total of 1673 initial hits, we identified 11 articles reporting on 9 different mobile or web-based software programs. The main result is that none of those studies focused on caregivers, and the ones we identified using mobile or web-based applications were just for patients and not their relatives.; Limitations: Differentiating between online and offline available software might not always have been totally reliable, and we might have therefore missed some studies.; Conclusions: In summary, the studies provided evidence that remotely accessible interventions for patients with SMI are feasible and acceptable to patients. No such empirically evaluated program was available for informal caregivers such as relatives. Keeping in mind the influential role of those informal caregivers in the process of treatment and self-management, this is highly relevant for public health. Supporting informal caregivers can improve well-being of both caregivers and patients.

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The Effectiveness of Psychosocial and Behavioral Interventions for Informal Dementia Caregivers: Meta-Analyses and Meta-Regressions

Background: Many psychosocial and behavioral interventions have been developed for informal dementia caregivers. Because existing meta-analyses only focused on a limited number of interventions and outcomes, how effective these interventions are overall and which interventions components are associated with larger effects has yet to be explored.; Objective: To provide a comprehensive meta-analysis of the effectiveness of psychosocial and behavioral interventions on burden, depression, anxiety, quality of life, stress, and sense of competence in informal dementia caregivers. In addition, we examined if interventions which utilized more sessions and/or were delivered personally (face-to-face) had larger effect sizes. In exploratory meta-regressions, we examined seven additional moderators.; Methods: The protocol was registered with PROSPERO, number CRD42017062555. We systematically searched the literature to identify controlled trials assessing the effect of psychosocial and behavioral interventions on the six outcome measures, for informal dementia caregivers. We performed six random effects meta-analyses, to assess the pooled effect sizes of the interventions. In addition, we performed separate meta-regressions, for each outcome, for each moderator.; Results: The sample consisted of 60 studies. For all outcomes except anxiety, the pooled effects were small and in favor of the intervention group. No moderator was found to systematically predict these effects. There were no indications for publication bias or selection bias based on significance.; Conclusion: Overall, the interventions yield significant (small) effects, independent of intervention characteristics. Future research should explore options to enhance the effectiveness of interventions aimed at assisting informal caregivers.

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Determining the feasibility and preliminary efficacy of a stroke instructional and educational DVD in a multinational context: a randomized controlled pilot study

Objective: To assess the feasibility of conducting a randomized controlled trial of an instructional and educational stroke DVD and determine the feasibility and preliminary efficacy of this intervention in a multinational context.; Design: Non-funded, pilot randomized controlled trial of intervention versus usual care.; Setting: International, multicentre, community-based.; Participants: Community-living adults up to three years post stroke with moderate to severe disability and their nominated informal caregivers.; Interventions: Intervention patients viewed and practised rehabilitation techniques demonstrated in the DVD over six weeks.; Main Measures: Trial feasibility by number of active recruitment sites, recruitment efficiency, randomization and follow-up. Intervention feasibility by patient and caregiver impressions. Preliminary efficacy by the quality of life - 5-level EuroQol-5D (EQ-5D) health status measure, General Health Questionnaire and Centre for Epidemiological Studies-Depression at two months.; Results: In total, 14 recruitment sites were established across eight countries. Recruitment was achieved at nine (64%) sites. Over 16 months, 66 participants were recruited (mean (SD) age = 63.5 (12.47) years) and randomized to intervention ( n = 34) and control ( n = 32) groups. In total, 54 (82%) completed a follow-up assessment. Patient and/or caregiver comments about the benefits and barriers to accessing the intervention were mixed. There were no significant between-group differences in outcomes at two months ( P > 0.05).; Conclusion: Conducting a multinational trial of a stroke DVD requires full funding. The intervention was acceptable to some patients and their caregivers, yet a generalized education approach did not fully meet their needs and/or expectations. A more individualized method may be required to meet peoples' changing needs during stroke recovery.

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Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites

Background: The Midhurst Macmillan Specialist Palliative Care at Home Service was founded in 2006 to improve community-based palliative care provision. Principal components include; early referral; home-based clinical interventions; close partnership working; and flexible teamwork. Following a successful introduction, the model was implemented in six further sites across England. This article reports a mixed methods evaluation of the implementation across these 'Innovation Centres'. The evaluation aimed to assess the process and impact on staff, patients and carers of providing Macmillan Specialist Care at Home services across the six sites.; Methods: The study was set within a Realist Evaluation framework and used a longitudinal, mixed methods research design. Data collection over 15 months (2014-2016) included: Quantitative outcome measures - Palliative Performance Scale [PPS] and Palliative Prognostic Index [PPI] (n = 2711); Integrated Palliative Outcome Scales [IPOS] (n = 1157); Carers Support Needs Assessment Tool [CSNAT] (n = 241); Views of Informal Carers -Evaluation of Services [VOICES-SF] (n = 102); a custom-designed Service Data Tool [SDT] that gathered prospective data from each site (n = 88). Qualitative data methods included: focus groups with project team and staff (n = 32 groups with n = 190 participants), and, volunteers (n = 6 groups with n = 32 participants). Quantitative data were analysed using SPPS Vs. 21 and qualitative data was examined via thematic analysis.; Results: Comparison of findings across the six sites revealed the impact of their unique configurations on outcomes, compounded by variations in stage and mode of implementation. PPS, PPI and IPOS data revealed disparity in early referral criteria, complicated by contrasting interpretations of palliative care. The qualitative analysis, CSNAT and VOICES-SF data confirmed the value of the Macmillan model of care but uptake of specialist home-based clinical interventions was limited. The Macmillan brand engendered patient and carer confidence, bringing added value to existing services. Significant findings included better co-ordination of palliative care through project management and a single referral point and multi-disciplinary teamwork including leadership from consultants in palliative medicine, the role of health care assistants in rapid referral, and volunteer support.; Conclusions: Macmillan Specialist Care at Home increases patient choice about place of death and enhances the quality of end of life experience. Clarification of key components is advocated to aid consistency of implementation across different sites and support future evaluative work.

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Health literacy and its correlates in informal caregivers of adults with memory loss

This secondary analysis examined health literacy among informal caregivers of community-dwelling older adults with memory loss and assessed correlates of caregiver health literacy using the Abilities, Skills and Knowledge Model. Caregiver health literacy (n = 91) was assessed by the Newest Vital Sign. Limited health literacy presented in 38.5% caregivers, with significantly low document literacy. Health literacy was associated bivariately with age, education, global cognitive function, executive function, and working memory (all ps < 0.001), as well as medication knowledge (p = 0.015). Hierarchical regression analyses revealed that older age (p = 0.017), and lower global cognitive function (p < 0.001), working memory (p = 0.001), and academic skills (years of education) (p = 0.004), independently predicted lower health literacy (R2 = 0.54). Medication knowledge, however, was not found to be an independent predictor in the model. Findings suggest limited health literacy is a potential issue among informal caregivers of adults with memory loss. Appropriate assessment and personalized support are needed for informal caregivers who are at high risk for poor health literacy

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Caring for the person with cancer: Information and support needs and the role of technology

Objective: Informal carers experience a variety of information and support needs when providing care to someone with cancer. It is unclear when carers seek information and what resources they access to support themselves throughout the cancer trajectory.; Methods: A sample of 45 carers and 15 oncology nurses were recruited to participate in either focus groups or phone interviews.; Results: Carers in the study were more likely to be women (60%), caring for a spouse or partner (64.4%), living with the patient (86.7%), and hold a university degree (46.7%). The majority of oncology nurses were females (66.6%). Findings showed that carers had limited access to adequate information as needs arose. Supports used to address information needs included information booklets, the Internet, and communication with healthcare professionals or with other carers. Barriers in communication between nurses and carers impacted on the adequacy of information received. Participants reported that technology, such as smartphone applications, might be appropriate for improving information and support needs.; Conclusions: Caring for someone with cancer is multifaceted. Carers need access to timely information to help them effectively manage patients' needs. Future studies should assess the role of contemporary approaches, such as digital technology, as a solution to the delivery of information and support for carers of people with cancer.

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Efficacy of a telephone outcall program to reduce caregiver burden among caregivers of cancer patients [PROTECT]: a randomised controlled trial

Background: Informal caregivers provide extended support to people with cancer but they receive little support from the health care system to assist them in their caring role. The aim of this single-blind, multi-centre, randomised controlled trial was to test the efficacy of a telephone outcall program to reduce caregiver burden and unmet needs, and improve psychological well-being among cancer caregivers, as well as evaluating the potential impact on patient outcomes.; Methods: Cancer patient/caregiver dyads (N = 216) were randomised to a telephone outcall program (n = 108) or attention control group (n = 108). The primary outcome was self-reported caregiver burden. Secondary endpoints included depressive symptoms, unmet needs, self-esteem, self-empowerment, and health literacy. Data were collected at baseline and at both 1 and 6 months post-intervention. An intention to treat analysis was performed.; Results: The intervention had no effect on the primary outcome (caregiver burden), but reduced the number of caregiver unmet needs (intervention group baseline, mean = 2.66, 95% confidence interval (CI) [1.91-3.54]; intervention group 1 month post intervention, mean = 0.85, 95%CI [0.42-1.44]; control group baseline, mean = 1.30 95%CI [0.80-1.94], control group 1 month post intervention, mean = 1.02 95%CI [0.52-1.69]; p = 0.023). For caregivers at risk for depression, the intervention had a significant effect on caregivers' confidence in having sufficient information to manage their health (p = 0.040). No effects were found for patients' depressive symptoms, unmet needs, self-empowerment, and other health literacy domains.; Conclusions: While caregiver burden was not reduced, the outcall program was effective in reducing unmet needs in caregivers. Provision of cancer information and support via a telephone service may represent a feasible approach to reducing unmet needs among cancer caregiver populations.; Trial Registration: ACTRN12613000731796 ; prospectively registered on 02/07/2013.;

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Caregiver social support quality when interacting with cancer survivors: advancing the dual-process model of supportive communication

Cancer caregivers often experience significant challenges in their motivation and ability to comfort cancer survivors, particularly in a spousal or romantic context. Spousal cancer caregivers have been known to report even greater levels of burden and distress than cancer sufferers, yet still take on the role of acting as an informal caregiver so they can attend to their partner's needs. The current study tested whether a theoretical model of supportive outcomes-the dual-process model of supportive communication-explained variations in cancer caregivers' motivation and ability to create high-quality support messages. The study also tested whether participant engagement with reflective journaling on supportive acts was associated with increased motivation or ability to generate high-quality support messages. Based upon the dual-process model, we posited that, following supportive journaling tasks, caregivers of spouses currently managing a cancer experience would report greater motivation but also greater difficulty in generating high-quality support messages, while individuals caring for a patient in remission would report lower motivation but greater ability to create high-quality support messages. Findings provided support for these assertions and suggested that reflective journaling tasks might be a useful tool for improving remission caregivers' ability to provide high-quality social support to survivors. Corresponding theoretical and applied implications are discussed.

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Caregiver social support quality when interacting with cancer survivors: advancing the dual-process model of supportive communication

Cancer caregivers often experience significant challenges in their motivation and ability to comfort cancer survivors, particularly in a spousal or romantic context. Spousal cancer caregivers have been known to report even greater levels of burden and distress than cancer sufferers, yet still take on the role of acting as an informal caregiver so they can attend to their partner's needs. The current study tested whether a theoretical model of supportive outcomes-the dual-process model of supportive communication-explained variations in cancer caregivers' motivation and ability to create high-quality support messages. The study also tested whether participant engagement with reflective journaling on supportive acts was associated with increased motivation or ability to generate high-quality support messages. Based upon the dual-process model, we posited that, following supportive journaling tasks, caregivers of spouses currently managing a cancer experience would report greater motivation but also greater difficulty in generating high-quality support messages, while individuals caring for a patient in remission would report lower motivation but greater ability to create high-quality support messages. Findings provided support for these assertions and suggested that reflective journaling tasks might be a useful tool for improving remission caregivers' ability to provide high-quality social support to survivors. Corresponding theoretical and applied implications are discussed.

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Problems experienced by informal caregivers of individuals with heart failure: An integrative review

Objectives: The purpose of this review was to examine and synthesize recent literature regarding problems experienced by informal caregivers when providing care for individuals with heart failure in the home.; Design: Integrative literature review.; Data Sources: A review of current empirical literature was conducted utilizing PubMed, CINAHL, Embase, Sociological Abstracts, Social Sciences Full Text, PsycARTICLES, PsycINFO, Health Source: Nursing/Academic Edition, and Cochrane computerized databases. 19 qualitative, 16 quantitative, and 2 mixed methods studies met the inclusion criteria for review.; Review Methods: Computerized databases were searched for a combination of subject terms (i.e., MeSH) and keywords related to informal caregivers, problems, and heart failure. The title and abstract of identified articles and reference lists were reviewed. Studies were included if they were published in English between January 2000 and December 2016 and examined problems experienced by informal caregivers in providing care for individuals with heart failure in the home. Studies were excluded if not written in English or if elements of caregiving in heart failure were not present in the title, abstract, or text. Unpublished and duplicate empirical literature as well as articles related to specific end-stage heart failure populations also were excluded. Methodology described by Cooper and others for integrative reviews of quantitative and qualitative research was used. Quality appraisal of the included studies was evaluated using the Joanna Briggs Institute critical appraisal tools for cross-sectional quantitative and qualitative studies.; Results: Informal caregivers experienced four key problems when providing care for individuals with heart failure in the home, including performing multifaceted activities and roles that evolve around daily heart failure demands; maintaining caregiver physical, emotional, social, spiritual, and financial well-being; having insufficient caregiver support; and performing caregiving with uncertainty and inadequate knowledge.; Conclusions: Informal caregivers of individuals with heart failure experience complex problems in the home when providing care which impact all aspects of their lives. Incorporating advice from informal caregivers of individuals with heart failure will assist in the development of interventions to reduce negative caregiver outcomes. Given the complex roles in caring for individuals with heart failure, multicomponent interventions are potentially promising in assisting informal caregivers in performing these roles.

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Participant perspectives of a home-based palliative approach for people with severe multiple sclerosis: A qualitative study

Background: We performed a qualitative study to investigate the experiences of participants in a multicentre randomized controlled trial on a home-based palliative approach (HPA) for adults with severe multiple sclerosis (MS) and their caregivers. Our aim was to explore the strengths and challenges of the intervention, and circumstances that may have influenced its efficacy.; Methods: Participants to the qualitative study were the patients, their caregivers, patient referring physicians, and the teams who delivered the HPA intervention. We performed semi-structured one-on-one interviews with 12 patients and 15 informal caregivers chosen using a maximum variation strategy, two focus group meetings with patient referring physicians (4 participants each), and one with the HPA teams (9 participants).; Results: From data analysis (framework method) 38 sub-categories emerged, which were grouped into 10 categories and 3 themes: 'expectations,' 'met and unmet needs', and 'barriers'. Intervention benefits were improved control of symptoms and reduced sense of isolation of the patient-caregiver dyads. Limitations were: factors related to experimental design (difficulty of dyads in identifying examiner and team roles, additional burden for caregivers); team issues (insufficient team building /supervision, competing priorities); limitations of the intervention itself (insufficient length, lack of rehabilitation input); and external factors (resource limitations, under-responsive services/professionals). The referring physician focus groups provided little experiential data.; Conclusions: The HPA reduced patient symptoms and sense of isolation in patients and caregivers. The indirect role of the HPA teams, and insufficient length of the intervention were key limitations. The experimental design imposed additional burdens on the dyads. Key barriers were the paucity of available services, the demanding administrative procedures, and lack of networking facilities. These findings suggest that two major requirements are necessary for home palliative care to be effective in this patient population: HPA teams well-connected with MS rehabilitation services, and care delivered over the long-term, with variable intensity.; Trial Registration: Current Controlled Trials ISRCTN73082124 (Registered 19/06/2014).;

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Distance education methods are useful for delivering education to palliative caregivers: A single-arm trial of an education package (PalliativE Caregivers Education Package)

Background: Face-to-face/group education for palliative caregivers is successful, but relies on caregivers travelling, being absent from the patient, and rigid timings. This presents inequities for those in rural locations. Aim: To design and test an innovative distance-learning educational package (PrECEPt: PalliativE Caregivers Education Package). Design: Single-arm mixed-method feasibility proof-of-concept trial (ACTRN12616000601437). The primary outcome was carer self-efficacy, with secondary outcomes focused on caregiver preparedness and carer tasks/needs. Analysis focused on three outcome measures (taken at baseline and 6 weeks) and feasibility/acceptability qualitative data. Setting and participants: A single specialist palliative care service. Eligible informal caregivers were those of patients registered with the outpatient or community service, where the patient had a prognosis of ≥12 weeks, supporting someone with nutrition/hydration and/or pain management needs, proficient in English and no major mental health diagnosis. Results: Two modules were developed and tested (nutrition/hydration and pain management) with 18 caregivers. The materials did not have a statistically significant impact on carer self-efficacy. However, statistically significant improvements were observed on the two subsidiary measures of (1) caregiving tasks, consequences and needs (p = 0.03, confidence interval: 0.72, 9.4) and (2) caregiver preparedness (p = 0.001, confidence interval: -1.22, -0.46). The study determined that distance learning is acceptable and feasible for both caregivers and healthcare professionals. Conclusion: Distance education improves caregiver preparedness and is a feasible and acceptable approach. A two-arm trial would determine whether the materials benefitted caregivers and patients compared to a control group not receiving the materials. Additional modules could be fruitfully developed and offered. 

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Internet Use and Technology-Related Attitudes of Veterans and Informal Caregivers of Veterans

Background: Healthcare systems are interested in technology-enhanced interventions to improve patient access and outcomes. However, there is uncertainty about feasibility and acceptability for groups who may benefit but are at risk for disparities in technology use. Thus, we sought to describe characteristics of Internet use and technology-related attitudes for two such groups: (1) Veterans with multi-morbidity and high acute care utilization and (2) informal caregivers of Veterans with substantial care needs at home.; Materials and Methods: We used survey data from two ongoing trials, for 423 Veteran and 169 caregiver participants, respectively. Questions examined Internet use in the past year, willingness to communicate via videoconferencing, and comfort with new technology devices.; Results: Most participants used Internet in the past year (81% of Veterans, 82% of caregivers); the majority of users (83% of Veterans, 92% of caregivers) accessed Internet at least a few times a week, and used a private laptop or computer (81% of Veterans, 89% of caregivers). Most were willing to use videoconferencing via private devices (77-83%). A majority of participants were comfortable attempting to use new devices with in-person assistance (80% of Veterans, 85% of caregivers), whereas lower proportions were comfortable "on your own" (58-59% for Veterans and caregivers). Internet use was associated with comfort with new technology devices (odds ratio 2.76, 95% confidence interval 1.70-4.53).; Conclusions: Findings suggest that technology-enhanced healthcare interventions are feasible and acceptable for Veterans with multi-morbidity and high healthcare utilization, and informal caregivers of Veterans. In-person assistance may be important for those with no recent Internet use.

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A blended psychosocial support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: protocol of a randomized controlled trial

Background: Informal caregivers of patients with Amyotrophic Lateral Sclerosis (ALS) or Progressive Muscular Atrophy (PMA) face stressful demands due to severe impairments and prospect of early death of the patients they care for. Caregivers often experience feelings of psychological distress and caregiver burden, but supportive interventions are lacking. The objective of this study is to investigate the effectiveness of a psychosocial support program aimed at enhancing feelings of control over caregiving tasks and reducing psychological distress. This support program is based on an existing program for adult partners of people with cancer and is adapted to meet the needs of ALS caregivers.; Methods: This study is a randomized controlled trial using a wait-list control design. One hundred and forty caregiver-patient dyads, recruited from a nationwide database and through the website of the Dutch ALS Center, will be either randomized to a support program or a wait-list control group. The blended intervention is based on Acceptance and Commitment Therapy and consists of 1 face-to-face contact, 6 online guided modules and 1 telephone contact. The intervention can be worked through in 8 weeks. The effectiveness and the participants' satisfaction with the intervention will be evaluated using a mixed method design. Caregivers and patients will be asked to fill in questionnaires on 4 occasions during the study: baseline, 3 months, 6 months and 9 months. The main study outcome is the psychological distress of the caregiver assessed with the Hospital Anxiety and Depression Scale. Secondary outcomes are caregiver burden, caregiver quality of life, quality of life of the patient and psychological distress of the patient. Group differences in primary and secondary outcomes at 6 months will be compared with linear mixed model analysis. In a subgroup of caregivers we will explore experiences with the support program through semi-structured interviews. Usage of the online modules will be logged.; Discussion: The study will provide insights into the effectiveness of a blended psychosocial support program on psychological distress of caregivers of patients with ALS or PMA, as well as into indirect relations with patients' wellbeing.; Trial Registration: Netherlands Trial Registry NTR5734 , registered 28 March 2016.

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Effectiveness of two home ergonomic programs in reducing pain and enhancing quality of life in informal caregivers of post-stroke patients: A pilot randomized controlled clinical trial

Background: Informal caregivers of post-stroke patients usually undergo high levels of pain and stress and have a reduced quality of life.; Objective: To evaluate the effectiveness of two home ergonomic interventions aimed at reducing pain intensity and perceived stress and enhancing the quality of life in informal caregivers of chronic post-stroke patients.; Methods: A randomized single-blind controlled clinical trial was conducted, with a sample of 33 informal caregivers of patients with stroke. Three groups were included: one received postural hygiene training and kinesiotherapy, for 12 weeks, two days a week, one hour per session; another received adaptation of the home environment, and the third was a control group. Pain intensity, stress level and general quality of life were evaluated at three-time points: pre-intervention, post-intervention, and after a follow-up period of three months.; Results: Neck pain decreased in the two experimental groups, and increased in the control group. Pain in the shoulders and knees was alleviated in the group that received postural hygiene and kinesiotherapy. In addition, regarding quality of life, this group obtained an improvement in the physical health dimension, while the home adaptation group reported improved social relationships.; Conclusions: These results suggest that 12 weeks of training in postural hygiene, combined with kinesiotherapy, and home adaptations can reduce pain and improve several aspects of the quality of life of this population. CLINICALTRIALS.; Gov Id: NCT03284580.; Copyright © 2018 Elsevier Inc. All rights reserved.

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The Effectiveness of Mindfulness- and Acceptance-Based Interventions for Informal Caregivers of People With Dementia: A Meta-Analysis

Background and Objectives: The application of mindfulness- and acceptance-based interventions (MABIs) for informal caregivers of people with dementia (PwD) is relatively novel, and the current state of the evidence base is unclear. This meta-analysis examined the effectiveness of MABIs on reducing symptoms of depression and burden in informal caregivers of PwD. The quality of included studies was evaluated and moderator variables explored.; Research Design and Methods: A literature search of six electronic databases (PsycARTICLES, PsycINFO, MEDLINE Complete, SCOPUS, Web of Science, and ProQuest) was conducted from the first available date to 20 December 2016. Inclusion criteria involved studies that quantitatively investigated the impact of MABIs on depression and/or burden in informal caregivers of PwD.; Results: Twelve studies, providing data on 321 caregivers, were included. Most used mindfulness-based stress reduction and were conducted in the United States. The average attrition among participants was 15.83%. The pre-post effect of MABIs was large for depression and moderate for burden. These effects were largely maintained at follow-up. Significant heterogeneity of effect sizes was observed, with no significant moderators identified. Study quality varied from very poor to moderately good.; Discussion and Implications: The low attrition and moderate to large effects suggest that MABIs are acceptable and beneficial for informal caregivers of PwD. The lack of significant moderators could advocate services using more cost-effective forms of MABIs. Further higher-quality research is needed to improve the robustness of the evidence base and enable a meta-analysis to thoroughly examine and quantify moderator variables.;

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Facilitating successful implementation of a person-centred intervention to support family carers within palliative care: a qualitative study of the Carer Support Needs Assessment Tool (CSNAT) intervention

Background An understanding of how to implement person-centred interventions in palliative and end of life care is lacking, particularly for supporting family carers. To address this gap, we investigated components related to successful implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention, a person-centred process of carer assessment and support, using Promoting Action on Research Implementation in Health Services (PARIHS) as a theoretical framework. This study identifies how the PARIHS component of ‘facilitation’ and its interplay with the components of ‘context’ and ‘evidence’ affect implementation success.

Methods MRC Framework Phase IV study to evaluate implementation of the CSNAT intervention at scale, over six months, in 36 UK palliative care services. 38 practitioners acting as internal facilitators in 35/36 services were interviewed. Field notes were collected during teleconference support sessions between the external and internal facilitators.

Results Successful implementation was associated with internal facilitators’ ‘leverage’ including their positioning within services, authority to change practice, and having a team of supportive co-facilitators. Effective facilitation processes included a collaborative approach, ongoing communication, and proactive problem solving to address implementation barriers. Facilitators needed to communicate the evidence and provide legitimacy for changing practice. Contextual constraints on facilitation included having to adjust recording systems to support implementation, organisational changes, a patient-focused culture and lack of managerial support.

Conclusions The CSNAT intervention requires attention to both facilitation processes and conducive organisational structures for successful implementation. These findings are likely to be applicable to any person-centred process of assessment and support within palliative care. 

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The Influence of Context and Practitioner Attitudes on Implementation of Person-Centered Assessment and Support for Family Carers Within Palliative Care

Background The Carer Support Needs Assessment Tool (CSNAT) intervention is an evidence-based, person-centered approach to carer assessment and support within palliative care. As such, it requires a change in practice from a practitioner- to a carer-led assessment and support process. A paucity of research has investigated factors affecting implementation of evidence-based interventions within palliative care. Objective To examine differences between high and low adopters of the CSNAT intervention in terms of practitioner attitudes to the intervention and organizational context. Methods Phase IV study of the implementation of the CSNAT intervention at scale in 36 UK palliative care services over 6 months. Survey at baseline and 6 months of practitioners at implementation sites, informed by the Promoting Action on Research Implementation in Health Services (PARIHS) Framework. Survey tools: (a) questionnaire to assess attitudes to the CSNAT intervention; (b) Alberta Context Tool (ACT) to assess organizational context. Monthly data on intervention use enabled service classification as “high” or “low” adopters. Results Surveys returned at baseline were 157/462 and at 6 months were 69/462. Compared with low adoption services, high adopters were more likely to be hospice, at home, and day services; have a higher ratio of internal facilitators to total staff numbers; and higher scores for ACT “informal interactions” denoting more discussions about care between colleagues. Both had similarly positive attitudes to the CSNAT intervention pre-implementation, but by 6 months low adoption services developed significantly more negative attitudes, while high adoption services attitudes mostly remained the same or improved. Linking Evidence to Action Implementation may be more successful for services that offer regular opportunities to use the intervention in practice, have sufficient levels of facilitators, stimulate more staff discussion, and encourage maintenance of positive motivation. Implementation of person-centered interventions needs to plan for such factors. This has informed an implementation toolkit for the CSNAT intervention.

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A systematic review on the implementation of eHealth interventions for informal caregivers of people with dementia

Objectives: The objectives were to (1) systematically review the literature on the implementation of eHealth interventions for informal caregivers of people with dementia, and (2) identify determinants of successful implementation.; Methods: Online databases were searched for articles about eHealth interventions for informal caregivers of people with dementia, providing information on their implementation. Articles were independently screened and inductively analyzed using qualitative analysis. The analysis was mapped onto the Consolidated Framework for Implementation Research (CFIR; Damschroder et al., 2009).; Findings: 46 articles containing 204 statements on implementation were included. The statements on implementation were grouped into four categories: Determinants associated with the eHealth application, informal caregiver, implementing organization, or wider context. Mapping of the determinants on the CFIR revealed that studies have focused mostly on characteristics of the intervention and informal caregiver. Limited attention has been paid to organizational determinants and the wider context.; Conclusions: Despite prolific effectiveness and efficacy research on eHealth interventions for caregivers of people with dementia, there is a critical dearth of implementation research. Furthermore, there is a mismatch between eHealth intervention research and implementation frameworks, especially concerning organizational factors and wider context. This review underscores the importance of future implementation research in bridging the gap between research and practice.

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Multimodal rehabilitation in the late phase after stroke enhances the life situation of informal caregivers

Purpose The burden of caregiving for stroke survivors is well known, but the effect of late stroke rehabilitation on the life situation of informal caregivers is unknown. Here, we assessed changes in the life situation of informal caregivers of stroke survivors enrolled in a multimodal intervention trial. Methods This controlled study was a questionnaire-based survey accompanying a three-armed randomized controlled trial of 123 stroke survivors. The care recipients of 106 caregivers who chose to participate were assigned to rhythm-and-music-based therapy (R-MT; n = 37), horse-riding therapy (H-RT; n = 37), or delayed intervention (control group, n = 32). Perceived changes in the life situation of the caregivers were evaluated with the Life Situation among Spouses after the Stroke Event (LISS) questionnaire before randomization, after the 12-week intervention, and 3 and 6 months later. Results After the intervention, the change in the median LISS score was significantly higher among intervention caregivers (1.5 [interquartile range (IQR) 8.8]) than controls (1.5 [IQR 8.8] vs. 0.0 [IQR 12.0], p = 0.036). The improvement was maintained at 3 months (1.5 [IQR 9.0] vs. 0.0 [IQR 10.5], p = 0.039) but not at 6 months (p = 0.284). Conclusion Engaging stroke survivors in multimodal interventions late after stroke appears to have potential to produce gains also in the general life situation of informal caregivers.

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An intervention that reduces stress in people who combine work with informal care: randomized controlled trial results

Background: The aim of the research was to examine whether a role-focused self-help course intervention would decrease caregiver stress and distress, and functioning problems, among people who suffer stress because they combine paid work with informal care.; Methods: A pre-registered (NTR 5528) randomized controlled design was applied (intervention vs. wait list control). Participants (n = 128) were people who had paid work and were suffering stress due to their involvement in informal care activities. Participants allocated to the intervention group (n = 65) received the role-focused self-help course. Control group members (n = 63) received this intervention after all measurements. Prior to the random allocation (pre-test), and 1 month (post-test 1) and 2 months (post-test 2) after allocation, all participants completed a questionnaire that measured their caregiver stress (primary outcome), distress, work functioning, negative care-to-work interference and negative care-to-social and personal life interference. Mixed model ANOVAs were used to test the effectiveness of the intervention.; Results: Two months after allocation, the intervention group participants had lower levels of caregiver stress and distress compared with the control group participants. The intervention did not directly resolve impaired work functioning or interference of care with work and social/personal life.; Conclusion: The intervention decreases caregiver stress and distress in people who suffer stress because they combine paid work with informal caring. The intervention (Dutch version) can be downloaded at no cost from www.amc.nl/mantelzorgstress.

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Access to community care for people with dementia and their informal carers : Case vignettes for a European comparison of structures and common pathways to formal care

Background: People with dementia and their informal carers often do not receive appropriate professional support or it is not received at the right time.; Objectives: Description and comparison of common pathways to formal community dementia care in eight European countries as a part of the transnational Actifcare project.; Materials and Methods: The German team was responsible for creating an individual case scenario as a starting point. The research teams in Ireland, Italy, the Netherlands, Norway, Portugal, Sweden, and the United Kingdom were then asked to describe a common pathway to formal dementia care by writing their own vignette using the provided individual case scenario.; Results: A transnational qualitative content analysis was used to identify the following categories as being the most important: involved professionals, dementia-specific and team-based approaches, proactive roles, and financial aspects. General practitioners (GPs) are described as being the most important profession supporting the access to formal care in all the involved countries. In some countries other professionals take over responsibility for the access procedure. Dementia-specific approaches are rarely part of standard care; team-based approaches have differing significances in each of the countries. Informal carers are mainly proactive in seeking formal care. The Nordic countries demonstrate how financial support enhances access to the professional system.; Conclusion: Enhanced cooperation between GPs and other professions might optimize access to formal dementia care. Team-based approaches focusing on dementia care should be developed further. Informal carers should be supported and relieved in their role. Financial barriers remain which should be further investigated and reduced.

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Informal care: choice or constraint?

Background: 'Choice' is increasingly pursued as a goal of social policy. However, the degree to which choice is exercised when entering an informal caring role is open to debate.; Aim: In this study, we examined the degree of choice and constraint in entering a caring role, and the relationship between choice and carers' well-being.; Methods: Data were derived from 1100 responses to a postal survey conducted in a British city. Statistical tests of association and multivariable regression modelling were applied to study the factors associated with choice in entering a caring role and the association that choice in entering a caring role had with carers' well-being.; Results: We found that informal care was generally perceived to be a free choice, albeit in most cases, a choice was also constrained by duty, financial or social resources. Having a sense of free choice in entering care was strongly and positively associated with the carer's well-being.; Conclusion: The study findings are consistent with a view that enabling individuals to have more choice in their caring roles may be beneficial.

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Biopsychosocial Intervention for Stroke Carers (BISC): protocol for a feasibility randomised controlled trial (RCT)

Introduction: Reducing length of hospital stay for stroke survivors often creates a shift in the responsibility of care towards informal carers. Adjustment to the caregiving process is experienced by many carers as overwhelming, complex and demanding and can have a detrimental impact on mental and physical health and well-being. National policy guidelines recommend that carers' needs are considered and addressed; despite this, few interventions have been developed and empirically evaluated. We developed a biopsychosocial intervention in collaboration with carers of stroke survivors. Our aim is to determine whether the intervention can be delivered in a group setting and evaluated using a randomised controlled trial (RCT).; Methods and Analysis: Feasibility RCT and nested qualitative interview study. We aim to recruit up to 40 stroke carers within 1 year of the stroke onset. Carers are randomised to usual care or usual care plus biopsychosocial intervention. Each intervention group will consist of five stroke carers. The intervention will focus on: psychoeducation, psychological adjustment to stroke, strategies for reducing unwanted negative thoughts and emotions and problem-solving strategies. The main outcome is the feasibility of conducting an RCT. Carer outcomes at 6 months include: anxiety and depression, quality of life and carer strain. Data are also collected from stroke survivors at baseline and 6 months including: level of disability, anxiety and depression, and quality of life.; Ethics and Dissemination: Favourable ethical opinion was provided by East Midlands - Nottingham2 Research Ethics Committee (14/EMI/1264). This study will determine whether delivery of the biopsychosocial intervention is feasible and acceptable to stroke carers within a group format. It will also determine whether it is feasible to evaluate the effects of the biopsychosocial intervention in an RCT. We will disseminate our findings through peer-reviewed publications and presentations at national and international conferences.; Trial Registration Number: ISRCTN15643456; Pre-results.

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Talking about end-of-life care in a timely manner

In 2014, a group of physicians of the Catharina Hospital in Eindhoven (The Netherlands) started a project called "Talking about end-of-life care in a timely manner". Just like others in the country, the Eindhoven group noticed that regularly, very frail elderly people were admitted to hospital in acute situations without there ever having been conversations about their wishes concerning treatment options at the end of life. The project aimed to prevent unnecessary admissions and treatments for these frail patients by stimulating physicians, patients and informal caregivers to start conversations about end-of-life care together at an earlier stage. The first phase of the project consisted of research: a study of the relevant literature on previous projects on the matter and a small empirical study in the Eindhoven region. This yielded as the most important causes of the delay of these conversations: the factors of timing (when is the right moment?), reserve (because of the potential emotional despair of the patient) and hope (who am I to rob a patient of their hope?). In the second phase of the project, several approaches were developed to help caregivers, patients and informal caregivers with the planning and execution of conversations about end-of-life care. Meetings were organised for patients and informal caregivers to foster awareness and to provide information. For caregivers, information was provided (via symposia and an app) and specifically designed training sessions were developed. The training sessions consist of reflection on the caregivers' personal choices with regard to end-of-life care (research has shown that caregivers choose less intensive medical treatments at the end of life) and of practising with the known complicating factors of timing, reserve and hope, and the different ways of thinking and talking about death and dying (typology of death and dying).; Educational aims: To understand the importance of discussing end-of-life care preferences with your patients at the appropriate time.To become aware of the possible interfering factors of timing, reserve and hope in talking about end-of-life care.; Key points: Using the Surprise Question may be a useful tool in determining the appropriate moment to discuss this with your patients.By talking with your patients about end-of-life care in a timely manner, unnecessary and unwanted treatment can be prevented.Constraints of doctors to implement this in their practice can be overcome by implementing a training session as described in this article.Collaboration between primary and secondary care on this issue is strongly recommended in order to assure the care continuum maximally.

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Advance Directives as Support of Autonomy for Persons with Dementia? A Pilot Study among Persons with Dementia and Their Informal Caregivers

Background: Advance directives could be an important instrument to support a person's will once he/she is not able to consent anymore - if composed competently. A survey was conducted to identify the level of knowledge concerning possibilities and limits of advance directives.; Methods: The study was conducted as part of the Bavarian Dementia Survey (BayDem). Data were collected from January 2014 to December 2015 by structured face-to-face interviews. Study participants were persons with dementia and their informal caregivers (n = 74).; Results: In total, 66% reported having written an advance directive. Concerning the participants' knowledge about possibilities and limitations of advance directives, a lack of knowledge was noted about the possibility to revoke an advance directive. Furthermore, 70% of informal caregivers and 56% of persons with dementia were not aware of the possibility to include dementia-specific terms in the advance directive.; Conclusion: It is necessary to optimize structures for public information and education concerning the topic of advance directives for persons with dementia.

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Keeping the person with dementia and the informal caregiver together: a systematic review of psychosocial interventions

Background: Social support, relationships, and closeness are emphasized as important by both people with dementia and their informal caregivers. Psychosocial interventions might be helpful to reinforce the relationship between a person with dementia and his or her informal caregiver. Therefore, this review explores what types of psychosocial interventions have been provided for people with dementia and their informal caregivers together, and the effectiveness of these interventions.; Methods: PubMed, PsychInfo, Cinahl, and references of key papers were searched for studies describing a psychosocial intervention for people with dementia and their informal caregivers together. Psychosocial interventions were defined as focusing primarily on psychological or social factors.; Results: A total of seven publications describing six studies were identified as eligible for inclusion in this review. Interventions ranged in focus from skills training to viewing/making art. The methodology of the studies varied, especially regarding the outcome measures used. The results of individual studies were mixed. A narrative synthesis of the included studies is given.; Conclusion: Although caregiving dyads emphasize the importance of their relationship, this is mostly not taken into consideration in the design and effect evaluations of the interventions. Improved research is needed on this subject, which focuses on people with dementia living in the community and those living in nursing homes.

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Positive and negative outcomes of informal caregiving at home and in institutionalised long-term care: a cross-sectional study

Background: Our ageing society is putting tremendous strain on public health and welfare programs to meet the needs of ageing individuals. Promoting informal caregiving is one way for policymakers to reduce this burden. However, caregiving may be experienced as stressful and is associated with adverse health consequences. While quite a lot of research focuses on caregiving for community-dwelling older adults, little is known about informal care in institutionalised long-term care (ILTC). Therefore, the objectives of this study were: 1) to compare characteristics of informal caregivers and care receivers and caregiver outcomes - at home and in ILTC; 2) to study the association between these characteristics and positive and negative caregiver outcomes; 3) to investigate the moderating effect of the setting (at home vs. ILTC) on these associations.; Methods: A cross-sectional study was conducted using the TOPICS-MDS DataSet. A total of 5197 Dutch dyads were included. The average age of the care receivers and caregivers was respectively 80.7 years and 63.2 years. Several sociodemographic, health-related and caregiving-related characteristics of care receiver and caregiver and two caregiver outcomes (i.e., subjective burden and care-related quality of life) were included in the analyses.; Results: Caregivers in both settings experienced comparable levels of subjective burden. Caregivers at home had slightly lower care-related quality of life than caregivers in ILTC. Several care receiver characteristics (i.e., male sex, married/cohabiting, more morbidities/disability, and less self-perceived health/psychological wellbeing) and several caregiver characteristics (i.e., female sex, being younger, living together with the care receiver, more objective burden, less self-perceived health, and more support) were associated with an increase in burden and/or a decrease in care-related quality of life. Some of these associations were stronger for dyads at home compared to dyads in ILTC.; Conclusions: Informal caregiving does not stop with admission to an ILTC facility. Both settings need an informal caregiving policy, which is (1) tailored to the individual characteristics of care receivers and caregivers; (2) pays attention to the identified risk groups; and (3) reduces the negative caregiver outcomes and emphasizes the positive outcomes at the same time.

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A qualitative study exploring medication management in people with dementia living in the community and the potential role of the community pharmacist

Background: The prevalence of dementia is increasing rapidly. People with dementia may be prescribed complex medication regimens, which may be challenging for them and any carers involved to safely manage.; Objective: To describe and understand the key challenges, in relation to medication issues, experienced by people with dementia and their informal carers dwelling in the community and the potential role of community pharmacists.; Design: Qualitative semi-structured interviews.; Participants: People with dementia, informal carers and health and social care professionals (HSCPs).; Results: Thirty-one participants (eleven informal carers, four people with dementia and sixteen HSCPs) were interviewed. Three key themes were identified: the key challenges, improving medication management and the role of pharmacists. The caring role commonly included responsibility for medication management which created both practical problems and an emotional burden. This burden was worsened by any difficulty in obtaining support and if the person with dementia was on a complex regimen. Participants believed that the process could be improved by coordinated and on-going support from HSCPs, which should focus on the informal carer. Medication reviews, particularly when conducted in the home environment, could be helpful.; Conclusion: Medication management for people with dementia living in the community is a complex process, and informal carers have a key role, which they frequently find challenging. Community pharmacists could have an enhanced role in this area, but would need to work within a more multidisciplinary environment outside the pharmacy.

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Testing the effectivity of the mixed virtual reality training Into D'mentia for informal caregivers of people with dementia: protocol for a longitudinal, quasi-experimental study

Introduction: Informal caregivers for people with dementia (hereafter: caregivers) often feel (over)burdened by the care for a loved one with dementia, and this can have various deleterious effects on both caregivers and patients. Support for caregivers is urgently needed, and for this reason, a dementia simulator (Into D'mentia) was developed in which caregivers experience what it is like to have dementia. The simulator attempts to heighten caregivers' empathy and understanding for the patient and, in turn, diminish their own caregiver burden. The current study evaluates whether the simulator is effective on a number of outcomes.; Methods and Analysis: A longitudinal, quasi-experimental study is ongoing in the Netherlands. We aim to recruit 142 caregivers in total divided over two groups: 71 caregivers in the intervention group and 71 caregivers in the control group. All participants will complete interviews and questionnaires at four time points: at baseline, 1 week, 2.5 months and 15 months after the training. The primary outcomes include empathy, caregiver burden, caregiver's sense of competence, social reliance, anxiety, depression and caregivers' subjective and objective health.; Ethics and Dissemination: This study is being carried out in agreement with the Declaration of Helsinki, and the protocol has been approved by the local ethics committees.; Registration Details: This study is registered with The Netherlands National Trial Register (NNTR5856).

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Supporting carers of people with dementia: what is effective?

Carer stress is well documented, especially in those caring for individuals with dementia. A recommendation of all national dementia strategies is to provide excellent support and information to informal carers of people with dementia. NICE guidance suggests that a range of tailored interventions, including psychological input, psychoeducation and training courses, should be offered to reduce caregiver burden and stress, although good-quality outcome-based evidence is lacking. On the basis of a narrative review of the literature, we describe individual and multicomponent carer support packages and discuss their evidence base, reflecting on outcomes for carers. Multicomponent interventions have the best evidence for effectiveness. 

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Assessing satisfaction with social care services among black and minority ethnic and white British carers of stroke survivors in England

Overall satisfaction levels with social care are usually high but lower levels have been reported among black and minority ethnic (BME) service users in England. Reasons for this are poorly understood. This qualitative study therefore explored satisfaction with services among informal carer participants from five different ethnic groups. Fifty-seven carers (black Caribbean, black African, Asian Indian, Asian Pakistani and white British) were recruited from voluntary sector organisations and a local hospital in England, and took part in semi-structured interviews using cognitive interviewing and the critical incident technique. Interviews took place from summer 2013 to spring 2014. Thematic analysis of the interviews showed that participants often struggled to identify specific 'incidents', especially satisfactory ones. When describing satisfactory services, participants talked mostly about specific individuals and relationships. Unsatisfactory experiences centred on services overall. When rating services using cognitive interviewing, explicit comparisons with expectations or experiences with other services were common. Highest satisfaction ratings tended to be justified by positive personal characteristics among practitioners, trust and relationships. Lower level ratings were mostly explained by inconsistency in services, insufficient or poor care. Lowest level ratings were rare. Overall, few differences between ethnic groups were identified, although white British participants rated services higher overall giving more top ratings. White British participants also frequently took a more overall view of services, highlighting some concerns but still giving top ratings, while South Asian carers in particular focused on negative aspects of services. Together these methods provide insight into what participants mean by satisfactory and unsatisfactory services. Cognitive interviewing was more challenging for some BME participants, possibly a reflection of the meaningfulness of the concept of service satisfaction to them. Future research should include comparisons between BME and white participants' understanding of the most positive parts of satisfaction scales and should focus on dissatisfied participants.

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Feasibility and effectiveness of a telephone-based social support intervention for informal caregivers of people with dementia: Study protocol of the TALKING TIME project

Background: Caring for people with dementia at home requires a significant amount of time, organization, and commitment. Therefore, informal caregivers, mainly relatives, of people with dementia often feel a high burden. Although on-site support groups are known to have positive effects on the subjective well-being (SWB) and perceived social support of informal caregivers, there are cases in which relatives have either no time or no opportunity to leave the person alone or in which there are no support groups nearby. The TALKING TIME project aims to close this supply gap by providing structured telephone-based support groups in Germany for the first time. International studies have shown benefits for informal caregivers.; Methods: The TALKING TIME study is a randomized controlled trial. The effects of the 3-month TALKING TIME intervention will be compared with those of a control group without intervention at two time points (baseline = T0, after 3 months = T1). The control group will receive the TALKING TIME intervention after T1. With a planned sample size of 88 participants, the study is powered to detect an estimated effect size of 0.70 for psychological quality of life, considering an α of 0.05 (two-sided), a power of 80%. Caregivers are informal caregivers who are eligible if they are 18 years of age or older and have cared for a person with diagnosed dementia for at least four hours, four days per week, in the past six months. The exclusion criteria are psychiatric disorders of the informal caregiver. The primary outcome is the mental component summary of the SF-12 rated by informal caregivers. The secondary outcomes for informal caregivers are the physical component summary of the SF-12, the Perceived Social Support Caregiver Scale (SSCS) score, and the Caregiver Reaction Scale (CRS) score. The secondary outcome for care recipients is the Neuropsychiatric Inventory (NPI-Q). For the process evaluation, different quantitative and qualitative data sources will be collected to address reach, fidelity, dosage and context.; Discussion: The results will provide further information on the effectiveness and optimization of telephone-based support groups for informal caregivers of people with dementia, which can help guide the further development of effective telephone-based social support group interventions.; Trial Registration: Clinical Trials: NCT02806583 , June 9, 2016.;

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The German day-care study: multicomponent non-drug therapy for people with cognitive impairment in day-care centres supplemented with caregiver counselling (DeTaMAKS) - study protocol of a cluster-randomised controlled trial

Background: It is the wish of both people with cognitive impairment and their informal caregivers for the impaired person to live at home for as long as possible. This is also in line with economic arguments about health. The existing structure of day-care services for the elderly can be used to achieve this. Due to the current lack of empirical evidence in this field, most day-care centres do not offer a scientifically evaluated, structured intervention, but instead offer a mixture of individual activities whose efficacy has not yet been established. Informal caregivers of people with dementia use day-care centres primarily to relieve themselves of their care tasks and as a support service.; Methods/design: The present study therefore investigates the effectiveness of a combination of a multicomponent activation therapy for people with mild cognitive impairment (MCI) or mild to moderate dementia at day-care centres and a brief telephone intervention for their informal caregivers. The study is conducted as a cluster-randomised intervention trial at 34 day-care centres in Germany with a 6-month treatment phase. The centres in the waitlist control group provide "care as usual". A power analysis indicated that 346 people should initially be included in the study. The primary endpoints of the study include the ability to perform activities of daily living (ADL) and cognitive capacities on the side of the day-care centre users and the subjectively perceived burden and well-being of the informal caregivers. The total duration of the study is 3 years, during which data are collected both by the psychometric testing of the people with cognitive impairment and by telephone interviews with informal caregivers.; Discussion: The project has three distinctive quality features. First, it is embedded in real care situations since the day-care services have already been established for this target group. Second, due to the large number of cases and the fact that the participating day-care centres are spread across the entire country, the results can be expected to be generalisable. Third, the interventions can be assumed to be implementable as they required only a one-day training event for the staff already working at the centres.; Trial Registration: ISRCTN16412551 (Registration date: 30 July 2014, registered retrospectively).

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Exploring the evidence base for how people with dementia and their informal carers manage their medication in the community: a mixed studies review

Background: Little is known about the general medicines management issues for people with dementia living in the community. This review has three aims: firstly to explore and evaluate the international literature on how people with dementia manage medication; assess understanding of medicines management from an informal carers perspective; and lastly to understand the role that healthcare professionals play in assisting this population with medicines management.; Methods: A mixed studies review was conducted. Web of Knowledge, PubMed and Cochrane Library were searched post-1999 for studies that explored medicines management in people with dementia dwelling in the community, and the role healthcare professionals play in supporting medicines management in people with dementia. Following screening, nine articles were included. Data from included studies were synthesised using a convergent synthesis approach and analysed thematically to combine findings from studies using a range of methods (qualitative, quantitative and mixed methods).; Results: Four themes were generated from the synthesis: The nature of the disease and the effects this had on medicines management; the additional responsibilities informal carers have; informal caregivers' knowledge of the importance of managing medication and healthcare professionals' understanding of medicines management in people with dementia. Consequently, these were found to affect management of medication, in particular adherence to medication.; Conclusions: This review has identified that managing medication for people with dementia dwelling in the community is a complex task with a frequently associated burden on their informal caregivers. Healthcare professionals can be unaware of this burden. The findings warrant the need for healthcare professionals to undergo further training in supporting medicines management for people with dementia in their own homes.

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Discussion Paper 10 Rural Carers in Ireland: Challenges and Opportunities

Traditionally, the majority of the population of Ireland have lived in rural areas outside of large towns and cities. However, this has changed over time, and in 2016 just over 37% of the population lived in an ‘aggregate rural area’ – which is an area of less than 1,500 inhabitants. The percentage of family carers living in these same rural aggregate areas is higher, at almost 42%.

The National Carers Strategy (2012) identifies ‘rural carers’ as a ‘subgroup’ of family carers (along with male carers, young carers and older carers) whose needs must be specifically addressed. Specific challenges face family carers living in rural or sparsely inhabited areas. While there are family carer support organisations across the country, operating and providing supports nationwide, not all of the challenges facing family carers can be addressed by support organisations alone.

This paper outlines some of these key issues, investigates some of the international research and responses to rural family carer challenges, and sets out some additional responses which are necessary in an Irish context.

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Research on Family Caregiving Support in the United States: A Strategic Plan

Research on Family Caregiving Support in the United States: A Strategic Research Plan is the product of an iterative, multi-layered process involving multiple stakeholders including family caregivers, persons with disabilities, health and social welfare professionals, policymakers, and researchers. Divided into four parts, this document outlines the next steps in researching family support by reviewing the current state of the field and identifying future directions.  

As a roadmap for future research on family support in the US, this document outlines opportunities for progress in each of four areas (exploration and discovery in family caregiving experiences; family support interventions; family support policy, programs, and services; and research methods in family support). Research on Family Caregiving Support in the United States: A Strategic Research Plan encourages funders and researchers to move forward in family support research by addressing topics and populations previously neglected, focusing on interventions and programs/policy, and supporting the use of novel methods.

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Global state of care

A landmark report on global carer priorities, featuring policies and programs that safeguard carers’ health and well-being, minimize financial stress, facilitate access to information, create flexible workplaces and support evidence-informed decision-making.

A profile of nine countries including the exciting developments and innovative practices addressing six fundamental issues:
  • Legislation

  • Financial support

  • Working arrangments

  • Pension credits

  • Respite care

  • Information & training

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Trust: an essential condition in the application of a caregiver support intervention in nursing practice

Background: The recent policy of deinstitutionalization of health care in Western countries has resulted in a growing number of people - including elderly - with severe mental illness living in the community where they rely on families and others for support in daily living. Caregiving for partners, parents, children, and significant others can be a stressful experience and has been associated with psychosocial problems and poorer physical health. To support caregivers, a new, complex, nurse-led caregiver - centered intervention was developed. The intervention focuses on preventing deterioration in the wellbeing of caregivers. The objective of this study is to obtain a better understanding of the potentials of this new intervention. Methods: We applied an interpretative qualitative field study at two Dutch mental health care institutes. Thirteen caregivers participated in a one-time semi-structured interview. Results: From the caregivers' perspective, a trusting relationship between caregivers and the mental health nurse is an essential condition for the depth and hence the effectiveness of the caregiver-centered counseling intervention. In this trusting relationship three overlapping and mutually reinforcing phases were identified (1) phase of engagement, (2) recognition of personal needs and (3) hope and optimism. Each phase encompasses key experiences that enhanced trust in that phase. Conclusions: Collaborative relationships between caregivers and mental health nurses provide a framework in which the mental health nurse can assess and help not only patients but also caregivers to gain insight into their situation and take on new roles and responsibilities in ways that promote their wellbeing.

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Effect of multicomponent interventions on competence of family caregivers of people with dementia: A systematic review

Aims and objectives: This review aims to summarise and evaluate multicomponent interventions focused on improving the competence of family members of people with dementia (PwD) who undertake the caregiving tasks. Background: Caregiver competence is essential for family members of PwD acting as caregivers. Competence affects the physical and mental health of both PwD and caregivers. Many kinds of multicomponent interventions are used to improve caregiver competence. Design: A systematic review. Methods: A literature search from six databases was conducted. Articles published until January 2017 were screened. Intervention studies that measured caregiver competence of family members of PwD as an outcome were included. The Oxford Center Evidence‐based Medicine criteria and the Cochrane Handbook for Systematic Reviews of Interventions were used for quality assessment. Results: Fifteen studies were included, and number of participants was 1096. The characteristics of the included studies and key findings were analysed. Multicomponent interventions may improve the family caregivers’ competence. Caregivers in the intervention group were confident and skilful in managing their role. Conclusion: The intervention design, treatment content and length and intensity of the intervention varied in the included studies. Given that heterogeneity was high, combining these results via narrative synthesis is more appropriate than a meta‐analysis. The current study provides recommendations regarding the formulation and implementation of interventions based on relevant literature. In view of existing research, researchers should conduct an in‐depth study in this area and provide evidence‐based interventions to support family members caring for PwD. Relevance to clinical practice: The competence of family caregivers is essential for the life quality of PwD. To promote the health of the family caregiver and PwD, multicomponent interventions may be appropriate for nurses to practice.

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Modeling Cortisol Daily Rhythms of Family Caregivers of Individuals With Dementia: Daily Stressors and Adult Day Services Use

Objectives: The study examined the typical diurnal cortisol trajectory and its differential associations with an intervention, the adult day services (ADS) use, among a sample of family caregivers who experienced high levels of daily stress. Method: On hundred and sixty-five caregivers of individuals with dementia completed an 8-day diary on daily stressors, positive events, sleep quality, and ADS use. The caregivers also provided five saliva samples on each diary day. Daily cortisol trajectories were modeled as a function of time elapsed since awakening, and three spline growth curve models were fit to the cortisol data. Based on the best-fitting linear spline model, the effect of daily ADS use was examined at both daily and person levels. Covariates included daily experiences and other caregiving characteristics. Results: On ADS days, caregivers had a steeper cortisol awakening response (CAR) slope and a steeper morning decline. ADS use remained significant after controlling for covariates at both daily and person levels. Discussion: The findings suggested potential biophysiological benefits of daily ADS use for a sample that was under chronic stress and high levels of daily stress. 

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The Tele.TAnDem Intervention: Telephone-based CBT for Family Caregivers of People With Dementia

Background and Objectives: This study evaluated the effectiveness of a telephone-based cognitive-behavioral therapy for family caregivers of people with dementia in existing health care provision structures. Research Design and Methods: Two hundred seventy-three family caregivers of people with dementia were randomly assigned to receive the intervention or usual care. Usual care included unrestricted access to community resources. Intervention group participants received twelve 50-min sessions of individual cognitive-behavioral therapy by trained psychotherapists within 6 months. Symptoms of depression, emotional well-being, physical health symptoms, burden of care, coping with the care situation and challenging behavior were assessed after the intervention ended and at a 6-month follow-up. Intention-to-treat analyses using latent change models were applied. Results: Intention-to-treat analyses showed improved emotional well-being (γ = 9.59, p = .001), fewer symptoms of depression (γ = -0.23, p = .043), fewer physical health symptoms (γ = -0.25, p = .019), improved coping with the care situation (γ = 0.25, p = .005) and the behavior of the care recipient (γ = 0.23, p = .034) compared with usual care. Effects for coping (γ = 0.28, p = .006 and γ = 0.39, p < .001, respectively) and emotional well-being (γ = 7.61, p = .007) were also found at follow-up. Discussion and Implications: The CBT-based telephone intervention increased mental and physical health as well as coping abilities of family caregivers of people with dementia. The intervention can be delivered by qualified CBT therapists after an 8-h training session in existing health care provision structures.

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Meeting the Informational, Educational, and Psychosocial Support Needs of Persons Living With Dementia and Their Family Caregivers

Background and Objectives: Meeting the unique and changing needs of individuals living with Alzheimer's disease and their family caregivers can be very challenging given the dynamic and often unpredictable nature of the disease. Effective programs are available to help families manage the challenges they will face. Research Design and Methods: This article first describes the educational, information, and support needs of individuals living dementia and their family caregivers across all stages of Alzheimer's. Next, we describe the variety of services and program models targeted to the needs of individuals living with Alzheimer's disease or other types of dementia and their families. Results: These programs can help ensure that person- and family-centered care is maintained from time of first symptoms through end-of-life. Discussion and Implications: We end with our recommendations for maintaining person- and family-centered care through the provision of targeted information, education, and support to individuals and their families. 

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The Effectiveness of a Knowledge Translation Cognitive-Educational Intervention for Family Members of Persons Coping with Severe Mental Illness

Keshet, a course for family members of persons’ coping with mental illness, was developed to enhance positive family cognitive communication skills. Improving communication with the use of mediation techniques, primarily used by therapists, creates a learning environment viewed as a strategy of Knowledge Translation. To examine the effectiveness of Keshet in improving attitudes, problem solving, communication skills and attenuation of burden a quasi-experimental research design was applied with study and control condition. The same group of participants (N = 38) completed questionnaires at different stages: 3 months prior to course, initiation and completion. Following participation, significant changes were observed in attitudes regarding knowledge of how to cope and interact with family member. A correlation was found between improved knowledge and decline in burden. Implementing interventions which provide caregivers with professional “know-how” leads to lessened burden, thus contributing to maintaining well-being of family caregiver population. 

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Prioritizing problems in and solutions to homecare safety of people with dementia: supporting carers, streamlining care

Background: Dementia care is predominantly provided by carers in home settings. We aimed to identify the priorities for homecare safety of people with dementia according to dementia health and social care professionals using a novel priority-setting method.; Methods: The project steering group determined the scope, the context and the criteria for prioritization. We then invited 185 North-West London clinicians via an open-ended questionnaire to identify three main problems and solutions relating to homecare safety of people with dementia. 76 clinicians submitted their suggestions which were thematically synthesized into a composite list of 27 distinct problems and 30 solutions. A group of 49 clinicians arbitrarily selected from the initial cohort ranked the composite list of suggestions using predetermined criteria.; Results: Inadequate education of carers of people with dementia (both family and professional) is seen as a key problem that needs addressing in addition to challenges of self-neglect, social isolation, medication nonadherence. Seven out of top 10 problems related to patients and/or carers signalling clearly where help and support are needed. The top ranked solutions focused on involvement and education of family carers, their supervision and continuing support. Several suggestions highlighted a need for improvement of recruitment, oversight and working conditions of professional carers and for different home safety-proofing strategies.; Conclusions: Clinicians identified a range of suggestions for improving homecare safety of people with dementia. Better equipping carers was seen as fundamental for ensuring homecare safety. Many of the identified suggestions are highly challenging and not easily changeable, yet there are also many that are feasible, affordable and could contribute to substantial improvements to dementia homecare safety.;

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Perspectives and Insights from Vietnamese American Mental Health Professionals on How to Culturally Tailor a Vietnamese Dementia Caregiving Program

Objective: Little is known about dementia and caregiving among the rapidly growing Vietnamese American population. This qualitative study elicited insights on culturally tailoring an intervention to address mental health needs in Vietnamese American dementia caregivers from Vietnamese American mental health professionals. Methods: Eight Vietnamese American mental health professionals were interviewed to explore: experiences working with and needs of the community; Vietnamese attitudes toward treatment; and acculturation in Vietnamese caregiving. Participants provided recommendations on tailoring a program for Vietnamese dementia caregivers. Content analysis of their responses was conducted. Results: Themes included: a) caregivers’ unique needs and experiences; b) different waves of immigration and acculturation levels affect views on mental health, treatment, and caregiving; c); traditions and beliefs on caregiving; d) mental health, help-seeking and health services; e) how to culturally tailor a program for Vietnamese dementia caregivers; and f) cultural acceptance of the program. Conclusions: An intervention to reduce stress and depression among Vietnamese American dementia caregivers should recognize the special risks of the experiences of war and immigration of the caregivers as well as the pressure of the expectations of the Vietnamese culture on family care. For the program to be acceptable and effective, it needs to consider all aspects of caregivers’ health, and incorporate Vietnamese cultural values/beliefs. Clinical Implications: A successful Vietnamese dementia caregiver intervention should include traditional Vietnamese values/beliefs, holistic experiences, spirituality, and background/immigration experiences. Evidence-based programs may be used with this population if they are culturally tailored. 

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Hospital discharge processes involving older adults living with dementia: An integrated literature review

Aims and objectives: To identify barriers and facilitators to engagement of people with dementia and family carers in planning for discharge from hospital. Background: Hospital discharge can be particularly challenging for older people with dementia. To assist in the development of bespoke discharge processes that address the unique needs of older people with dementia, an integrated review of the literature was undertaken. Design and methods: A four‐stage integrative review framework guided the review. Three search strategies were employed: a computerised database search, a hand search of reference lists and forward citation searching. Paired members of the research team reviewed eligible full‐text papers. The methodological quality of each paper was assessed using the Mixed‐Methods Assessment Tool, followed by data extraction and completion of summary tables. Within and across study analysis and synthesis of study findings was undertaken using thematic synthesis. Results: Fifteen papers were included in the review. Most identified barriers to collaborative discharge processes related to distributed responsibility for discharge, risk averse approaches to discharge, limited family carer confidence, and limited validation of assumptions about family competency to manage at home. Facilitators included supported clinician and family carer engagement, and maintaining independence for activities of daily living. Relevance to clinical practice: Reflective analysis of discharge decisions, focused on risk and possible risk aversion, can assist teams to evaluate the quality of their discharge decisions. The use of formal communication strategies such as a patient/family‐held journal of the hospital experience and a structured family meeting early in the hospital admission can enhance family engagement in discharge planning. Prevention of functional and cognitive decline is emerging as critical to improving hospital discharge outcomes. 

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Outcome of a web-based mindfulness intervention for families living with mental illness - A feasibility study

Background: Families living with a person with mental illness can experience distress requiring therapeutic interventions. Web-based mindfulness interventions have shown beneficial health outcomes for both clinical and healthy populations, and may help families cope and overcome barriers that can otherwise hinder a help-seeking process.; Aims: To develop and assess outcomes of a web-based mindfulness intervention for families living with a person with mental illness.; Methods: A pilot study investigating an 8-week web-based mindfulness intervention with a pre-post design and follow-up after 3 months, with mindfulness as the primary outcome and perceived stress, caregiver burden and self-compassion as secondary outcomes. The study included a sample of 97 persons approached by advertisement in newspapers, newsletters, and online.; Results: The study showed significant improvements in levels of mindfulness post-intervention and at follow-up as well as significant improvements in levels of perceived stress, caregiver burden, and self-compassion both post-intervention and at follow-up.; Discussion: Acceptability and feasibility of the intervention were high, outcomes were relevant, and the intervention showed positive and significant results supporting the hypothesis that the intervention may help families cope with a stressful situation.; Conclusion: Further randomized controlled studies of the intervention are needed to investigate the intervention's effectiveness, including dose-effect studies.;

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eHealth interventions for family carers of people with long term illness: A promising approach?

Family carers of people who have long term illness often experience physical and mental health morbidities, and burden. While there is good evidence to suggest that carers benefit from psychosocial interventions, these have primarily been delivered via face-to-face individual or group-formats. eHealth interventions offer a novel, accessible and self-paced approach to care delivery. Whether these are effective for carers' wellbeing has been little explored. This paper reports the first comprehensive systematic review in this area. A total of 78 studies, describing 62 discrete interventions, were identified. Interventions commonly aimed to promote carers' knowledge, self-efficacy, caregiving appraisal, and reduce global health morbidities. Interventions were offered to carers of people with a wide range of long term illness; dementia has been the most researched area, as reported in 40% of studies. Clinical and methodological heterogeneity in interventions precluded meta-analyses, and so data were analysed narratively. The most popular approach has comprised psychoeducational interventions delivered via an enriched online environment with supplementary modes of communication, such as network support with professionals and peers. Overall, carers appreciate the flexibility and self-paced nature of eHealth interventions, with high rates of satisfaction and acceptability. More studies using robust designs are needed to extend the evidence base.

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Interventions That Support or Involve Caregivers or Families of Patients with Traumatic Injury: a Systematic Review

Background: Almost 40 million family caregivers care for a loved one with severe physical or cognitive impairments. The purpose of this review is to summarize evidence about the benefits of interventions to support or involve family members/caregivers of patients with trauma-related injury on caregiver, patient, and household outcomes. Methods: English-language peer-reviewed publications in MEDLINE, CINAHL, and PsycINFO from 1995 through December 2016 were identified. Eligible studies included RCT or quasi-experimental studies evaluating interventions designed to support or involve caregivers or family members of patients with TBI, PTSD, or polytrauma. Abstractions were completed by one reviewer and checked by a second; two reviewers independently assessed risk of bias using the Cochrane Effective Practice and Organization of Care Review Criteria. Results:  Thirteen studies (n = 9 TBI; n = 4 PTSD, n = 0 polytrauma) evaluated psychological or rehabilitation interventions involving caregivers. Interventions did not improve TBI patients' functional status (standardized mean difference [SMD], 0.29 [95% confidence interval [CI], - 0.51 to 1.08]) or psychological symptoms (SMD - 0.25, CI - 0.62 to 0.12). Qualitative analysis shows potential intervention benefit for TBI symptoms. Interventions did not improve TBI caregiver psychological symptoms (SMD - 0.26, CI - 0.57 to 0.05); however, qualitative analysis suggests mixed effects for caregiver burden and quality of life. Positive intervention effects on patients' PTSD symptoms, mental health service use, and PTSD caregivers' psychological symptoms were identified with certain interventions. Strength of evidence ranged from moderate to very low. Discussion: Studies showed mixed patterns of intervention effects on caregiver and patient outcomes; evidence about intervention impact is inconclusive. This review is the first to identify caregiving interventions for patients with TBI and polytrauma and extends past reviews about patients with PTSD. Limitations include a small evidence base, low study quality, disparate methods, varied outcome measures, and high heterogeneity. PROSPERO Registration CRD42017053516. 

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To be or not to be? A caregiver's question: the lived experience of a stroke family during the first 18 months poststroke

Background: Disability following a stroke often requires family, commonly a spouse, to provide care enabling the stroke survivor to return home. Immediate or extended family and friends may help provide direct care or support the primary caregiver. While family members share the common stroke experience, this is lived within the context of separate lives. Research examining the individual nuances, roles and contribution of family and/or friends forming part of collective stroke networks, has largely been overlooked. Aim: This New Zealand study aimed to explore the lived experience of three stroke family members during the 18 months following a first‐ever stroke. Method: Hermeneutic phenomenology guided the study. Informed consent was obtained prior to individual interviews conducted 6 weeks, 12 months and 18 months poststroke. Findings: Three main themes emerged: (i) Being prepared, (ii) Where you stand changes the view and (iii) Relinquishing and reclaiming. Being prepared revealed how these family members anticipated the stroke and drew on personal and professional experience in facing the phenomenon. The second theme showed the influence of expectation and positionality on family members' experiences. Relinquishing and reclaiming identified loss, grief and a quest for equity in the synthesis of competing stroke survivor and caregiver desires. Conclusions: Familiarity with the caregiving role and experience of unreliable community services led stroke family members to question the primary caregiver's ability to resume caregiving following a family member's stroke. The primary caregiver was physically and emotionally spent, and rest home care for the survivor became the only self‐preserving option. A new caring arrangement was formulated seeking equity for both stroke survivor and caregiver. 

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Interventions to Support Carers of People with Dementia

This review considers what works to support carers of older people with dementia to prevent or delay entry into residential aged care. It identified 44 interventions (most from overseas) that supported carers of people with dementia, of which 26 were from studies assessed as high quality and so were the focus of the analysis.

Interventions that support carers of older people with dementia show limited effectiveness in achieving the outcome of preventing or delaying entry into residential care. Of the 26 interventions in high-quality studies, only three were found to be effective. Two involved counselling and the other involved case management.

None of the effective interventions are considered appropriate for adoption at this stage for the purpose of preventing or delaying entry into residential aged care. The overall evidence of effectiveness for the counselling interventions was inconclusive as some adaptations were ineffective. But there may be value in further testing. One adaptation had success in the Australian context albeit with important caveats. The case management intervention had several context-specific aspects that limit its transferability to Australia.

Overall, why some interventions were effective in delaying or preventing entry to residential care and others were not is unclear. The interventions often have multiple components, making it hard to isolate the characteristics that influence residential care placement. In addition, many of the components in effective interventions also existed in those that were not. And context — in relation to place and time — matters.

Reducing the risk and delaying the progression of dementia may be a more fruitful avenue to prevent or delay entry into residential care than interventions to support carers.

But the finding of limited effectiveness of interventions to support carers does not suggest that dementia-related funding for carer services, resources and research should be reduced. There are gaps in the research (in particular, studies for respite services). And supporting carers of people with dementia may have important benefits beyond keeping the person with dementia at home.

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Exemplar models and support for older carers and carers of people with dementia: informing commissioning

This is the report of a project commissioned by NHS England in support of its Commitment to Carers programme. The focus of the work was to scope exemplar models of support for older carers, and carers of people with dementia (of any age). The project reviewed existing literature and knowledge and used this as the foundation for examining developments with invited third sector organisations using an on-line questionnaire and additional semi-structured interviews. The work took place between May 2017 and March 2018 and included a consultation workshop in February 2018 with NHS England and other key stakeholders to refine messages and conclusions. The report describes the work undertaken and presents an analysis of findings, together with conclusions and recommendations for NHS England. 

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Evaluation of a brief pilot psychoeducational support group intervention for family caregivers of cancer patients: a quasi-experimental mixed-methods study

Background: Family caregivers of cancer patients often experience an impaired quality of life (QOL) and emotional distress as a result of their caregiving duties, which may potentially influence the quality of care of their care recipients. The COPE (Caregivers of cancer Outpatients' Psycho-Education support group therapy) intervention was developed as a response to the lack of work done among family caregivers of ambulatory cancer patients in Asia. This group intervention comprised four weekly sessions simultaneously targeting psychoeducation, skills training, and supportive therapy. The present study sought to evaluate the pilot COPE intervention using both quantitative and qualitative measures. The Hospital Anxiety and Depression Scale (HADS) was used to measure both depression and anxiety, while the Caregiver QOL - Cancer (CQOLC) measured caregiver QOL. These instruments were measured at baseline pre-intervention, and immediately post-intervention. A waitlist control group design was adopted. A subset of caregivers from the intervention group were invited for a semi-structured interview post-intervention.; Findings: Quantitative analyses suggest that while QOL remained stable in control group participants, intervention group participants experienced QOL improvements - both in overall QOL and in the specific domain of burden. There were no significant differences in the trajectories of depression and anxiety in both groups. Qualitative analyses suggest that this might have been a result of the intervention not only equipping participants with the relevant coping skills, but also providing a platform for emotional expression and situational reappraisal.; Conclusions: The COPE intervention has shown some efficacy in helping family caregivers of cancer patients, but more work is required before this can be implemented.; Trial Registration: Current Controlled Trials NCT02120183 . Registered 17 April 2014. Retrospectively registered.;

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Evaluation of a brief pilot psychoeducational support group intervention for family caregivers of cancer patients: a quasi-experimental mixed-methods study

Background: Family caregivers of cancer patients often experience an impaired quality of life (QOL) and emotional distress as a result of their caregiving duties, which may potentially influence the quality of care of their care recipients. The COPE (Caregivers of cancer Outpatients' Psycho-Education support group therapy) intervention was developed as a response to the lack of work done among family caregivers of ambulatory cancer patients in Asia. This group intervention comprised four weekly sessions simultaneously targeting psychoeducation, skills training, and supportive therapy. The present study sought to evaluate the pilot COPE intervention using both quantitative and qualitative measures. The Hospital Anxiety and Depression Scale (HADS) was used to measure both depression and anxiety, while the Caregiver QOL - Cancer (CQOLC) measured caregiver QOL. These instruments were measured at baseline pre-intervention, and immediately post-intervention. A waitlist control group design was adopted. A subset of caregivers from the intervention group were invited for a semi-structured interview post-intervention.; Findings: Quantitative analyses suggest that while QOL remained stable in control group participants, intervention group participants experienced QOL improvements - both in overall QOL and in the specific domain of burden. There were no significant differences in the trajectories of depression and anxiety in both groups. Qualitative analyses suggest that this might have been a result of the intervention not only equipping participants with the relevant coping skills, but also providing a platform for emotional expression and situational reappraisal.; Conclusions: The COPE intervention has shown some efficacy in helping family caregivers of cancer patients, but more work is required before this can be implemented.; Trial Registration: Current Controlled Trials NCT02120183 . Registered 17 April 2014. Retrospectively registered.;

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Family intervention for caregivers of people with recent‐onset psychosis: A systematic review and meta‐analysis

Aim: We aimed to systematically review the evidence of the effectiveness of family interventions for caregivers of people with recent‐onset psychosis compared with usual psychiatric care. A secondary objective was to directly compare the effects of different types of family interventions. Methods: MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials (CENTRAL), CINAHL Complete and EBSCOhost were searched to identify relevant randomized controlled trials. Trial data were extracted following the procedures described in the Cochrane Handbook of systematic reviews. Random‐effects models were used to pool the intervention effects. Results: Twelve studies including 1644 participants were included in this review. With the exception of a high risk of performance bias inherent to the nature of the psychosocial interventions, the studies had an overall low or unclear risk of bias, suggesting that sources of bias are unlikely to lower confidence in the estimate of intervention effects. Meta‐analyses were conducted for 4 different participant outcomes reported in 9 studies. Compared with usual psychiatric care, family intervention was more effective in reducing care burden over all follow‐up periods. Family intervention was also superior to usual care with regards to caregiving experience in the short term and improved utilization of formal support and family functioning over longer‐term follow up. Mutual support is more effective than psychoeducation in improving family functioning when measured 1 to 2 years after the intervention but had equivalent effects on utilization of formal support services. Conclusions: This review provides evidence that family intervention is effective for caregivers of recent‐onset psychosis, especially for care burden where the positive effects are enhanced over time. 

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Randomized, controlled trial of a brief family‐centred care programme for hospitalized patients with bipolar disorder and their family caregivers

Family interventions have been emphasized in the treatment of bipolar disorder (BPD) due to the bidirectional and entangled relationships between patients and the family system, and have benefits for patients’ symptoms and health; however, the effects of family interventions on family function and caregivers’ health‐related outcomes have not been well investigated. This randomized, controlled trial with 47 hospitalized patients with BPD/family caregiver dyads at a medical centre in northern Taiwan compared the effects of a brief family‐centred care (BFCC) programme with treatment as usual (TAU). All of the family caregivers in two groups were invited to attend a routine 60‐min family discussion group about violence and suicide prevention. The TAU group without specific family interview for patient and family caregiver dyad. In the BFCC group, four 90‐min BFCC programme sessions were additionally provided twice a week for each hospitalized family dyad. We hypothesized that, first, family caregivers in the BFCC group could increase their family function, and second, improve perceived health status and reduce caregiver's burdens compared to the TAU. The results showed that family caregivers in the BFCC group significant interaction effects in overall family function (P = 0.03) and subscale conflict (P = 0.04), communication (P = 0.01), and problem‐solving (P = 0.04), but there were no significant interaction effects on the caregivers’ perceived health status and caregivers’ burdens. Our findings support both the feasibility of using the BFCC programme for inpatients and its specific benefits for family function. An intensive family intervention during hospitalization has been suggested in psychiatric practice to support patients with BPD and family caregivers. 

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Challenges in supporting lay carers of patients at the end of life: results from focus group discussions with primary healthcare providers

Background: Family caregivers (FCGs) of patients at the end of life (EoL) cared for at home receive support from professional and non-professional care providers. Healthcare providers in general practice play an important role as they coordinate care and establish contacts between the parties concerned. To identify potential intervention targets, this study deals with the challenges healthcare providers in general practice face in EoL care situations including patients, caregivers and networks. Methods: Focus group discussions with general practice teams in Germany were conducted to identify barriers to and enablers of an optimal support for family caregivers. Focus group discussions were analysed using content analysis. Results: Nineteen providers from 11 general practices took part in 4 focus group discussions. Participants identified challenges in communication with patients, caregivers and within the professional network. Communication with patients and caregivers focused on non-verbal messages, communicating at an appropriate time and perceiving patient and caregiver as a unit of care. Practice teams perceive themselves as an important part of the healthcare network, but also report difficulties in communication and cooperation with other healthcare providers. Conclusion: Healthcare providers in general practice identified relational challenges in daily primary palliative care with potential implications for EoL care. Communication and collaboration with patients, caregivers and among healthcare providers give opportunities for improving palliative care with a focus on the patient-caregiver dyad. It is insufficient to demand a (professional) support network; existing structures need to be recognized and included into the care. 

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Developing a complex intervention programme for informal caregivers of stroke survivors: The Caregivers' Guide

Background Stroke affects the entire family system. Failure to meet the needs of caregivers leads to physical and mental overburdening. Stroke caregivers may benefit from professional support. The literature reviews have shown that there is still no clarity concerning the most appropriate set-up of a support programme. In Germany, there is no stroke caregiver support programme that operates throughout the course of rehabilitation. Aim The aim was to develop a complex intervention programme for stroke caregivers in North-Rhine Westphalia, Germany. Methods A naturalistic enquiry approach, using a mixed-methods design, was applied. Within one overarching qualitative study, three separate, explorative, inductive, qualitative substudies were conducted: (i) seven explorative interviews with experienced stroke caregivers, (ii) six semi-structured interviews with professionals working within stroke rehabilitation and (iii) seventeen participant observations with focus on professional-caregiver interactions. Regional stroke units, rehabilitation centres, outpatient services and the home environment of caregivers were included. By means of a four-step qualitative content analysis, all three data sets were coded, categorised and subsequently condensed into subthemes, clustered into main themes, and finally translated into 'Conceptual Building Blocks' of the programme. Results The need for a personalised, holistic and multicomponent caregiver support programme emerged from all three substudies. Fourteen themes were condensed from the subthemes. Caregivers should be approached directly after stroke using outreach counselling. Support should be provided by a specially trained focal person across the entire patient's rehabilitation trajectory. The newly developed support programme consists of five flexible 'Conceptual Building Blocks': Content, Human Resources, Personalised Approach, Timing and Setting. Conclusion Through a qualitative mixed-methods design, an in-depth contextual understanding of stroke caregiver needs within the rehabilitative support system was reached. This allowed the development of a context tailored comprehensive caregiver support programme consisting of five 'Conceptual Building Blocks'.

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Music therapy and intimacy behaviors of hospice family caregivers in South Korea: A randomized crossover clinical trial

Family caregivers may experience emotional and relational distress due to decreased intimacy and communication with their loved one at end-of-life. The purpose of the study was to examine intimacy behaviors in a family-patient relationship at the end-of-life with the central research question: Is there a difference in frequency of family caregivers’ intimacy acts, defined and recorded as verbal intimacy, affective intimacy, and physical intimacy with their dying loved one when comparing music therapy and chaplaincy? Ten patient and family caregiver dyads participated in both a 15-min music therapy session, and a 15-min chaplaincy session in a randomized controlled crossover trial with AB/BA design. Sessions were video recorded and analyzed using the Family Intimacy Observation Scale, a researcher-developed tool. Intimacy behaviors were compared using the Wilcoxon Signed-rank Test. Music therapy resulted in statistically significant higher affective intimacy and physical intimacy behaviors toward a dying loved one when compared to chaplaincy. No statistically significant differences were found in overall verbal intimacy; however, the verbal behavior of “letting go of loved one” was significantly higher in music therapy versus chaplaincy. Music therapy may be an effective therapeutic modality to increase emotional and physical intimacy in a family-patient relationship at the end-of-life.

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Feasibility of applying the psychosocial intervention STrAtegies for RelaTives to family caregivers of patients with dementia: a case report

As the number of people with dementia in Japan continues to rise, family caregivers are experiencing an increasing care burden. Previous research has shown that this care burden can affect family caregivers' physical and mental health. Therefore, providing support for caregivers of family members with dementia has become an urgent issue in the country. The purpose of this study was to investigate the feasibility of applying STrAtegies for RelaTives (START), a psychosocial intervention programme developed in the UK to improve caregivers' moods and quality of life, to Japanese family caregivers. Specifically, in this paper, we provide a detailed description of the application of the Japanese version of START to a female caregiver. Our investigation found that the Japanese version of START is a feasible option for alleviating the mental and physical burden on family caregivers of patients with dementia. This result provides preliminary support for the wider application of START in Japan, as it can decrease care burden and improve the daily lives of caregivers of people with dementia. It also supports the development and implementation of other systems that can provide similar services for other caregivers. 

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Factors associated with the quality of life of family caregivers for leukemia patients in China

Background: The leukemia affects not only the quality of life (QOL) of patients with the disease but also that of their family caregivers (FCs). The research studies on QOL of FCs for leukemia patients are limited. This study aimed to evaluate the QOL of FCs for leukemia patients in Heilongjiang province, China. Methods: A cross-sectional questionnaire survey was undertaken with 309 FCs for leukemia patients recruited from three hospitals in Heilongjiang province. The QOL of the participants was assessed using the Chinese version of WHOQOL-BREF. Multivariate regression models were established to determine the predictors of the QOL of FCs, including the socio-economic characteristics of patients and FCs, and the emotional distress, social support and family functions of FCs. Results: The FCs had low QOL scores in all four domains: 12.7 ± 2.8 for physical, 12.2 ± 2.5 for psychological, 13.2 ± 2.9 for social and 11.3 ± 2.5 for environment. Social support is a major predictor of the QOL of FCs, with a standardized β coefficient of "high support" ranging from 0.41 to 0.58 for the four domains, followed by family function (β = 0.37 ~ 0.44 for psychological, social and environmental domains). The FCs who were older, highly educated, had no religious belief, suffered from a higher level of emotional distress, and provided care to younger patients and the patients without insurance coverage had lower QOL than the others. Conclusion: The study provides some important insights into the QOL of FCs for leukemia patients. The QOL of FCs for leukemia patients is low and low levels of support to FCs are a major predictor of low QOL of FCs. 

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Caregiving at the End of Life: The Challenges for Family Caregivers

In recent years, end-of-life care has been receiving attention in the lay and professional press. Integral to the concerns for patient-centered supportive care is the need to focus on the family caregiver, as they are directly involved in the patient's care. This article describes relevant challenges for the family caregiver, including information about types of care, scheduling and logistics, patient physical care, including symptom management, caregiver emotional and physical health, advance directives, coordination of care, and communication. It concludes by imagining a better system of end-of-life care for patients and caregivers. 

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Who cares for the carers at hospital discharge at the end of life? A qualitative study of current practice in discharge planning and the potential value of using The Carer Support Needs Assessment Tool (CSNAT) Approach

Background: Carer factors prevent patients achieving timely and appropriate hospital discharge. There is a lack of research into interventions to support carers at hospital discharge. Aim: To explore whether and how family carers are currently supported during patient discharge at end of life; to assess perceived benefits, acceptability and feasibility of using The Carer Support Needs Assessment Tool (CSNAT) Approach in the hospital setting to support carers. Design: Qualitative. Setting/participants: Three National Health Service Trusts in England: focus groups with 40 hospital and community-based practitioners and 22 carer interviews about experiences of carer support during hospital discharge and views of The CSNAT Approach. Two workshops brought together 14 practitioners and five carers to discuss implementation issues. Framework analysis was conducted. Results: Current barriers to supporting carers at hospital discharge were an organisational focus on patients' needs, what practitioners perceived as carers' often 'unrealistic expectations' of end-of-life caregiving at home and lack of awareness of patients' end-of-life situation. The CSNAT Approach was viewed as enabling carer support and addressing difficulties of discussing the realities of supporting someone at home towards end of life. Implementation in hospital required organisational considerations of practitioner workload and training. To enhance carer support, a two-stage process of assessment and support (hospital with community follow-up) was suggested using the CSNAT as a carer-held record to manage the transition. Conclusion: This study identifies a novel intervention, which expands the focus of discharge planning to include assessment of carers' support needs at transition, potentially preventing breakdown of care at home and patient readmissions to hospital. 

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Communication among cancer patients, caregivers, and hospice nurses: Content, process and change over time

Objective: First, to describe communication of home hospice nurse visits to cancer patient-caregiver dyads. Second, to assess change in communication related to domains of care over the course of visits. Methods: Multi-site prospective observational longitudinal study of audio-recorded home hospice visits (N=537 visits; 101 patient-caregiver dyads; 58 nurses). Communication was coded using the Roter Interaction Analysis System to describe content and process. Conversation representing three care domains (physical, psychosocial/daily life, and emotional) was calculated from RIAS categories across speakers and analyzed to assess change in communication over time. Results: On average, nurses spoke 54% of total utterances, caregivers 29%, and patients 17%. For all participants, the predominant conversational focus was on physical care. Linear mixed effects models indicated that combined participant emotional talk showed a small systematic decrease over time; however, the results for all domains indicated variability unexplained by time or speaker effects. Conclusions: Home hospice conversations are predominantly focused on physical care. Systematic change in communication versus responsiveness to the dynamic effects of patient death and family response over time are discussed. Practice Implications: Communication strategies already in use by hospice nurses could be leveraged and expanded upon to better facilitate family competence and confidence. 

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Discussion Paper 8: Difficult Relationships and Family Caring

This is the eighth paper in the Care Alliance Ireland Discussion Paper series. The papers in this series are not intended to present a definitive account of a particular topic, but to introduce a less-discussed, sensitive or perhaps controversial topic for discussion within the wider community of practitioners, policy makers, researchers and other interested parties. This often takes the form of a literature review (where possible), along with a discussion of views which have been shared with a member of the Care Alliance team either by our member organisations or Family Carers themselves. In some cases this will be a topic which has been raised and shared in the media or social spaces online.

Caring for a “loved one” has long been acknowledged as having real implications for Family Carers’ physical and mental health, along with economic, employment and other impacts.  Not all of these impacts, however, are negative. The positive impact of providing care – often significant levels of care – has been well researched.

However, much of this research presupposes that the person being cared for is, indeed, a “loved one”. What happens when the person being cared for isn’t particularly well-loved? How do Family Carers who perhaps do not even like the person they are providing care for deal with the effects of this negative, maybe even toxic, relationship?

This paper focuses on three particular “scenarios” in which Family Carers may need to manage difficult, negative and even toxic relationships while providing care to a family member or friend. These are:

  • Caring for a family member (generally a parent) who abused or neglected them in childhood
  • Caring for a spouse/partner where the relationship had significant difficulties prior to the care situation arising
  • Conflict in family/sibling relationships where one party provides significant care and others do not.
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Discussion Paper 9: Family caring and minority populations

The aim of this series is to introduce a topic for thought and debate within the Family Caring sector. In particular, the series focuses on emerging, under-discussed, and perhaps difficult issues, as a way to stimulate debate.

Much of the supports and research undertaken with and about family carers presupposes that family carers in Ireland are white, heterosexual and Catholic. Statistically, that group is indeed the largest cohort of family carers. However, latest figures from Census 2016 illustrates the breadth of diversity within family carers in Ireland. Whilst many of the challenges faced by family carers from minority populations (such as those from ethnic minorities, religious minorities and those from the LGBT community) will be similar to those faced by the general population, each has particular issues acting as further complicating factors – such as racism, homophobia, or perhaps a lack of adequate access to information. Even when the problems faced are the same, the preferred solutions for these groups may not be.

This latest paper in the Care Alliance Discussion Paper series explores these issues and suggests some policy and support changes which may be useful to consider. 

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Strain on unpaid carers putting adult social care at increased risk of collapse

The strain on millions of unpaid carers is harming their health, jeopardising the care of loved ones they care for, and putting the adult social care system at an increased risk of collapse, council and care leaders are warning.

Contains link to case studies.

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Participation and interest in support services among family caregivers of older adults with cancer

Objective: The purpose of this study was to describe distressed and underprepared family caregiver's use of and interest in formal support services (eg, professional counseling, education, organizational assistance). Method: Cross-sectional mail survey conducted in communities of 8 cancer centers in Tennessee, Alabama, and Florida (response rate: 42%). Family caregivers of Medicare beneficiaries with pancreatic, lung, brain, ovarian, head and neck, hematologic, and stage IV cancers reported support service use and completed validated measures of depression, anxiety, burden, preparedness, and health. Results: Caregivers (n = 294) were on average age 65 years and mostly female (73%), White (91%), and care recipients' spouse/partner (60%); patients averaged 75 years were majority male (54%) with lung cancer (39%). Thirty-two percent of caregivers reported accessing services while 28% were "mostly" or "extremely" interested. Thirty-five percent of caregivers with high depressive symptoms (n = 122), 33% with high anxiety symptoms (n = 100), and 25% of those in the lowest quartile of preparedness (n = 77) accessed services. Thirty-eight percent of those with high depressive symptoms, 47% with high anxiety symptoms, and 36% in the lowest quartile of preparedness were "mostly" or "extremely" interested in receiving services. Being interested in support services was significantly associated with being a minority, shorter durations of caregiving, and with higher stress burden. Conclusions: A large proportion of family caregivers, including those experiencing depression and anxiety symptoms and who were underprepared, are not using formal support services but have a strong interest in services. Strategies to increase service use may include targeting distressed caregivers early in their caregiving experience. 

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Yoga and compassion meditation program improve quality of life and self-compassion in family caregivers of Alzheimer's disease patients: A randomized controlled trial

Aim: To investigate the effects of the practice of yoga in combination with compassion meditation on the quality of life, attention, vitality and self-compassion of family caregivers of patients with Alzheimer's disease.; Methods: A total of 46 volunteers were randomly allocated to two groups, the yoga and compassion meditation program group (n = 25), and the control group (CG) that received no treatment (n = 21). The program lasted 8 weeks, and comprised three yoga and meditation practices per week, with each session lasting 1 h and 15 min. Quality of life, attention, vitality, and self-compassion scores were measured pre- and postintervention.; Results: The yoga and compassion meditation program group showed statistically significant improvements (P < 0.05) on quality of life, attention, vitality and self-compassion scores as compared with the control group, which showed no statistical significant differences at the postintervention time-point.; Conclusions: The findings of the present study suggest that an 8-week yoga and compassion meditation program can improve the quality of life, vitality, attention, and self-compassion of family caregivers of Alzheimer's disease patients.  

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Community REACH: An Implementation of an Evidence- Based Caregiver Program

Background and Objectives: Family caregivers (CGs) are critical to the provision of long-term services and support for older adults. Numerous intervention programs to alleviate CG distress have been developed and evaluated yet few have been implemented in community settings. This paper describes and presents outcomes from Community REACH, a community implementation of the evidence-based Resources for Enhancing Alzheimer's Caregiver Health (REACH) II program. Research Design and Methods: Community REACH involved a partnership between REACH II investigators and United HomeCare Services (UHCS), a nonprofit home health organization that provides home health, personal care, companion, and respite services. The intervention program, an adapted version of an evidence-based program, was a 6-month multicomponent psychosocial intervention, which involved six individual face-to-face and six individual telephone sessions, and telephone support groups. One hundred and forty-six CGs who were primarily female (76%) and Latino, and providing care for an individual with Alzheimer's disease (AD) were enrolled. Program effectiveness was assessed by examining changes in perceived social support, burden, and depression, and CG self-efficacy. Results: At 6 months, CGs reported significant decreases in depression, burden, being and bothered by the care recipient's memory problems. There was also a significant decline in the number of CGs at risk for clinical depression. These improvements were maintained at 12 months and there was an increase in feelings of social support. Discussion and Implications: The findings indicate that evidence-based CG programs can be successfully implemented in community settings and benefit CGs of AD patients. A continued partnership between the program developers and community partners is key to implementation success. 

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Impacts of COPD on family carers and supportive interventions: a narrative review

Caring for a relative with chronic disease influences multiple dimensions of family carers' lives. This study aimed to provide an overview of the impacts of chronic obstructive pulmonary disease ( COPD) on family carers and identify interventions aimed at supporting them. A narrative review was conducted. Searches were performed in electronic databases using a combination of keywords. Articles were screened for relevance and selected articles were analysed in two groups considering the study aims. Eighteen articles were selected. Fifteen studies evaluated the impacts of COPD on family carers and three studies presented interventions aimed at supporting them. Carers reported negative impacts of caring on physical health, emotional, social, relational and financial/employment life dimensions. Positive aspects of care-giving were reported in four studies and were related to carers' personal growth and satisfaction in being able to do something useful for their relatives. The existing interventions were directed at both patients and carers; however, studies provided limited information on how carers were involved, hindering the interpretation of findings. In conclusion, COPD poses several unique challenges to family carers related to the specificities of the disease. Further research with appropriate intervention studies is needed to promote carers' healthy adjustment to the disease. 

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Barriers to increasing the physical activity of people with intellectual disabilities

Background: The prevalence of obesity, inactivity and related morbidity and mortality is higher amongst people with intellectual disabilities than in the population in general, an issue of global concern. This research examined the perspectives of people with intellectual disabilities and their carers, on exercise and activity. Materials and Methods: Qualitative data were collected via interviews and a focus group with people with intellectual disabilities and their paid and family carers, recruited via state-funded community-based day centres in Scotland. Results: Three barriers hindered service users with intellectual disabilities from regular involvement in physical activity: (i) acceptance of an inactive lifestyle by carers; (ii) restrictions on activity due to paid carer preferences and resource limitations; (iii) communication issues between family carers and paid carers. Barriers were based on assumptions made by paid and family carers, so there is potential to increase activity by changing attitudes, improving communication and reconceptualising activity as integral to everyday living, rather than as additional exercise requiring special resources. Conclusions: Carers should be supported to promote physical activity in a variety of ways to enhance the motivation of service users, to encourage them to engage with physical activity as an integral part of a healthy lifestyle and to transfer this to their lives beyond day care. 

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The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study

Aim: To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia. Background: The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding. Design: Descriptive qualitative study. Methods: During 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke's thematic analysis. Results: Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer's holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff. Conclusion: The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs' dementia expertise to maximize their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia, our findings have international relevance to similar nursing homes across the world. 

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Family Caregivers' Preparations for Death: A Qualitative Analysis

Context: Many family caregivers are not prepared for the death of their family member or friend. Palliative care services tend to emphasize the patients' preparation for death rather than caregivers' preparation for, or living after, death. Caregivers' perspectives on anticipating and preparing for death are under-researched, despite preparation being associated with better bereavement outcomes. Objectives: The objective was to explore family caregivers' preparations for death. Methods: A total of 16 family caregivers of people in receipt of palliative care participated in semi-structured, face-to-face interviews. Transcripts were coded and analyzed using grounded theory techniques. Results: Analysis yielded two overarching themes: Here and Now centered on the caregivers' focus on the multidimensional and all-consuming nature of caregiving for someone who is near death. Negotiating the Here/After described the tension the caregivers faced in vacillating between focusing on the care during the illness trajectory (Here) and worries and plans for the future (After). Conclusion: This exploratory study is the first to focus solely on family caregivers' experiences of preparing for a death. The caregivers described the complexities of trying to prepare while feeling overwhelmed with demands of caregiving throughout an unpredictable illness trajectory. The caregivers in the present study were cognitively prepared, some were behaviorally prepared, but emotional preparedness was challenging. Services should not assume that all family caregivers are well-prepared for the death. Caregivers would likely benefit from the assessment and promotion of their death preparedness.

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Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial

Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. Aim: To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Design: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. Setting/participants: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. Results: The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001). Conclusion: Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers. 

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What We Do: Key Activities of an Outpatient Palliative Care Team at an Academic Cancer Center

Background: Outpatient palliative care (PC) has been shown to positively impact quality of life and decrease healthcare utilization, but there are limited data describing what activities render these benefits. Objective: Describe the topics addressed by an outpatient PC team during scheduled visits. Design: Longitudinal cohort study. Setting: The Symptom Management Service, an ambulatory PC program at an academic comprehensive cancer center. Measurement: Between March 23, 2015 and June 14, 2016, outpatient PC providers completed a checklist after each clinic visit, documenting topics covered during the visit. Results: During the study period, 1243 visits were conducted for 577 unique patients. Symptom management was the topic most commonly addressed during initial visits (in 92% of visits), followed by an introduction of PC (69%), support for family caregivers (47%), and communication with other clinicians (38%). Providers also supported patients to understand their prognosis (28%), treatment options (36%), and to make care decisions (22%). Formal advance care planning activities occurred infrequently, however, including designation of a Durable Power of Attorney for Healthcare (26%), completion of an advance directive or Provider Orders for Life-Sustaining Treatment form (10%), and discussing hospice (8%). Follow-up visits were dominated by symptom management (93%) and caregiver support (27%). Conclusions: Symptom management, support for family and caregivers, and care coordination are the most common activities that occurred during scheduled outpatient PC visits. These findings can guide developing PC practices, as well as clinicians who provide primary PC. 

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Supporting the Supporters: What Family Caregivers Need to Care for a Loved One With Cancer

Patients with cancer who live at home often require help with activities of daily living, basic medical care (eg, injections), social needs, and patient advocacy. Most of that support comes from intimate caregivers, typically members of the patient's family. These family caregivers themselves require support so that they can be effective and maintain their own well-being while caring for the patient with cancer. Research shows that support for caregivers contributes to achieving these goals. We propose a four-part framework for supporting family caregivers: (1) assess caregivers' needs using formal measures, just as the cancer patient's own needs are assessed, (2) educate caregivers for their caregiving roles, most notably, with training in the low-level medical support that cancer patients require at home, (3) empower caregivers to become full-fledged members of the patient's cancer team, all working toward common goals, and (4) assist caregivers proactively in their duties, so that they retain a sense of control and self-efficacy rather than having to react to imminent medical crises without sufficient resources at their disposal. Funding support for family caregivers requires refocusing on the overall well-being of the patient-caregiver dyad rather than just on the patient. It will necessitate a paradigm shift in reimbursement that recognizes the need for holistic cancer care. 

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Illustration of informal caregiving within Saudi society: demography, scope of care and enabling arrangements

Although informal caregiving is a vital element in the process of supporting individuals with dependency, it is unrecognised most of the time, particularly by caregivers themselves. In Saudi Arabia, little attention has been devoted to informal caregivers; therefore, scarce coverage of this topic is obvious within the literature. This descriptive cross-sectional study was carried to explore informal caregiving within Saudi society by (i) describing informal caregivers and their care recipients and (ii) measuring the scope of care and enabling arrangements in the lives of informal caregivers. Numerical measures of frequency distribution were used to describe the participants and the correlate of demography among 341 female primary caregivers of the elderly (40%), individuals with disabilities (10%) or/and children aged five or younger (51%). Inferential statistics were used to test for significant associations among study variables. The majority of the participants were married with children and were middle-aged. However, the majority of care recipients were living with their caregivers; in addition, they were primarily females cared for by a mother or, less often, by a daughter (in-law). Enabling arrangements were on a moderate level, mainly in healthcare access, financial resources and family support, with lower signs detected in the quality of sleep indicator. These arrangements were significantly associated with caregiver age, education, career status and source of assistance. In conclusion, the statistics revealed by this survey indicated certain challenges that have been encountered by informal caregivers, primarily involving financial and social support. More coverage within the formal system of childcare must be provided to facilitate healthier childhoods. The long-term needs of individuals with dependency must be considered in the planning process of healthcare services, as well, remembering the needs and expectations of informal caregivers.

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The implementation of mindfulness‐based interventions and educational interventions to support family caregivers of patients with cancer: A systematic review

Purpose: This review aims to determine the effectiveness of mindfulness‐based interventions (MBIs) and educational interventions (EIs) as supportive care for family caregivers (FCs) of patients with cancer. Design and Methods: Review was conducted following PRISMA guidelines. The search protocol was performed using EBSCO, Google Scholar, and Science Direct for the studies published between 2007 and 2017. Findings: Little evidence is available on the usefulness of MBIs among FCs of patients with cancer. However, the available evidence supports that MBIs have the potential to enhance overall well‐being and reduce the burden for FCs. EIs have shown positive outcomes on some aspects of well‐being and reducing the burden. Practice Implications: The findings provide preliminary support for effectiveness of MBIs and EIs as a supportive care for FCs. 

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Effectiveness of interventions for co‐residing family caregivers of people with dementia: Systematic review and meta‐analysis

Background/aim: Occupational therapists and health practitioners commonly provide interventions to family caregivers of people with dementia with the aim of relieving burden, depression, and disruptions in health and social support. To date, the effects of multicomponent interventions specifically targeting these four important outcomes has not been established. The aim of this study was to evaluate the effectiveness of multicomponent interventions on four outcomes for co‐residing family caregivers of people with dementia. Methods: A comprehensive database search of the literature was performed using CINAHL, MEDLINE, PubMed, PsycINFO, OTseeker, EMBASE and the Cochrane library. Randomised control trials (RCTs) that included multicomponent interventions for co‐residing family caregivers addressing burden, depression, health and social support were selected. Relevant articles were critically reviewed and study results were synthesised. Meta‐analysis was conducted separately. Results: Twenty‐two of 358 retrieved studies were selected, with 15 studies being included in the meta‐analyses. The multicomponent interventions identified were comprised of a range of different individual strategies. Significant effective results were found for all four specified outcomes. Conclusions: Many types of multicomponent interventions appear beneficial on all of the four specified outcomes. The literature presents a trend that multicomponent interventions consisting of a combination of counselling, support groups, education, stress and mood management or telephone support are important strategies within an effective multicomponent intervention. 

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Randomized Controlled Trial of Inner Resources Meditation for Family Dementia Caregivers

Objective: This randomized controlled trial examined the comparative effectiveness of 2 interventions for improving diurnal cortisol slope and life satisfaction and reducing stress symptoms among older female dementia family caregivers.; Method: Thirty-one family dementia caregivers were randomized to 8 weeks of Inner Resources for Stress mindfulness meditation and mantra training (IR) or psychoeducation and telephone support (PTS).; Results: Intention-to-treat analyses revealed statistically significant pre-post improvements in diurnal cortisol slope and overall life satisfaction, but not depression or self-efficacy, in the IR relative to the PTS group. Adherence to between-session meditation practice was significantly associated with decreases in depression and self-reported improvements in ability to cope with stress. In addition, IR participants rated the overall benefits of the program more highly than the PTS group.; Conclusion: These results indicate that mindfulness meditation and mantra has promise as a feasible and effective caregiver intervention for quality of life and physiological responding to stress.; © 2017 Wiley Periodicals, Inc.

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The use of advanced medical technologies at home: a systematic review of the literature

Background: The number of medical technologies used in home settings has increased substantially over the last 10-15 years. In order to manage their use and to guarantee quality and safety, data on usage trends and practical experiences are important. This paper presents a literature review on types, trends and experiences with the use of advanced medical technologies at home.; Methods: The study focused on advanced medical technologies that are part of the technical nursing process and 'hands on' processes by nurses, excluding information technology such as domotica. The systematic review of literature was performed by searching the databases MEDLINE, Scopus and Cinahl. We included papers from 2000 to 2015 and selected articles containing empirical material.; Results: The review identified 87 relevant articles, 62% was published in the period 2011-2015. Of the included studies, 45% considered devices for respiratory support, 39% devices for dialysis and 29% devices for oxygen therapy. Most research has been conducted on the topic 'user experiences' (36%), mainly regarding patients or informal caregivers. Results show that nurses have a key role in supporting patients and family caregivers in the process of homecare with advanced medical technologies and in providing information for, and as a member of multi-disciplinary teams. However, relatively low numbers of articles were found studying nurses perspective.; Conclusions: Research on medical technologies used at home has increased considerably until 2015. Much is already known on topics, such as user experiences; safety, risks, incidents and complications; and design and technological development. We also identified a lack of research exploring the views of nurses with regard to medical technologies for homecare, such as user experiences of nurses with different technologies, training, instruction and education of nurses and human factors by nurses in risk management and patient safety.

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The relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden

Introduction: Stroke is a chronic condition that necessitates multidimensional and overwhelming care. The caregivers of stroke patients are faced with various stressors that can threaten different aspects of their health, especially their mental health. Spiritual attitude and being spiritually oriented contribute significantly to mental health and can be used as a strategy for adapting to the stressful events that are part of the role of caregiving. This study was therefore conducted to investigate the relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden.; Methods: This descriptive cross-sectional study was conducted in 2016. The study population consisted of all the family caregivers of older patients with stroke presenting to health care centers and nursing service companies of Gilan Province in Iran. The participants were selected through convenience sampling and consisted of 407 participants. Data were collected using the Spiritual Attitude Scale and the Caregiver Burden Inventory and were then analyzed in SPSS-18 using Pearson's correlation coefficient at a significance level of 0.05.; Results: The results showed that 88.9% of the caregivers were females. The mean age of the participants was 38.3±8.8 years. The duration of caregiving was <5 years in 84.4% of the participants, while its mean was 4.2±2.5 years. The mean score of spiritual attitude was 108.77±6.20. The majority of the participants (49.3%) had moderate and relatively favorable spiritual attitude (a score of 72-120), 27.8% had high or favorable spiritual attitude; 8.7% had mild burden, 54.4% had moderate burden and 37% had favorable burden. The mean score of burden was 28±12.75. A statistically significant positive relationship was observed in this study between the mean score of spiritual attitude and the total score of burden in all its dimensions, namely, time dependence, as well as the developmental, physical, social and emotional dimensions.; Conclusion: Providing strategies for improving spirituality, such as teaching spiritual self-care, can improve their burden. Given that such strategies are psychologically approved and pose no side effects, they can be used as an effective, low-cost and risk-free approach for all caregivers, so that they can acquire the necessary spiritual support for overcoming the stress caused by caring for family members through the reinforcement of their spiritual beliefs in the ultimate effort to provide effective care to older patients while maintaining their own health and quality of life.

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Psychological distress, perceived burden and quality of life in caregivers of persons with schizophrenia

Background: Caregiving in schizophrenia is a demanding and exhausting activity that challenges the physical and emotional resources of family caregivers. In traditional societies such as India, this is further compounded by illiteracy, ignorance and religious and cultural explanations attributed to mental illness.; Aims: This study aimed to assess primary caregivers of persons with schizophrenia in terms of their perceived burden, manifestation of psychological distress and quality of life (QOL).; Methods: The study used a quantitative cross-sectional design and survey methodology to collect data from caregivers in a hospital setting in Thanjavur, India. Standardized instruments were used to collect data from patients and their caregivers.; Results: High perceived burden and lower QOL were seen in the majority of caregivers. They also manifested high levels of anxiety and depression. Patient characteristics such as age, gender, symptoms and duration of illness did not influence the perceived burden of caregivers, while positive and negative symptoms and the duration of illness were correlated with their QOL.; Conclusions: Findings indicate the need for intervention for family caregivers to enable them cope more effectively with the demands of caregiving. Psychoeducation and participation in peer support groups are advocated as low resource and effective outcome strategies for caregivers in India.;

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Do stress and support matter for caring? The role of perceived stress and social support on expressed emotion of carers of persons with first episode psychosis

Background: Caring for a person with first episode psychosis (FEP) is a challenging and distressing task for the carers. The carers' stress in the early stage of psychosis can increase their expressed emotion (EE) while social support is hypothesized to decrease EE. However, the influence of stress and social support on carers' EE is not well understood in FEP.; Aim: To examine how the stress and social support shape expressed emotion in the carers of FEP.; Methods: Seventy one carers of the patients with non-affective FEP were recruited from the inpatient psychiatry ward of a tertiary mental health care center in South India. The family questionnaire, perceived stress scale and multidimensional scale of perceived social support were used to measure their EE, stress and social support respectively.; Results: Carers experienced high level of perceived stress, EE and poor social support. Perceived stress significantly increased EE (β=0.834; p<0.001) and social support did not significantly influence EE (β=-0.065; p>0.05). Perceived stress predicted 76 percent of the variance on EE (Adjusted R2=0.761).; Conclusion: The results emphasize high level of stress and EE in carers of patients with FEP that implies the need for appropriate psychosocial interventions to manage their stress.; Copyright © 2016 Elsevier B.V. All rights reserved.

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Beyond quality of life: a cross sectional study on the mental health of patients with chronic kidney disease undergoing dialysis and their caregivers

Background: Patients with terminal chronic kidney disease (CKDT) requiring renal replacement therapies (RRT) undergo important changes in living habits and frequently need caregiving. These patients and their caregivers are risk groups for the development of physical and psychological symptoms. This study aimed to evaluate the prevalence of anxiety, depression, stress, fatigue, social support, and quality of life in patients with CKD and their caregivers.; Method: This cross sectional study was conducted with 21 patients and their caregivers, from January to September 2015. We included patients aged over 18 years, with at least 6 months on dialysis treatment, and caregivers who were family members. The participants' social, demographic, clinical, laboratory, and psychological variables were evaluated. A descriptive analysis and an examination of the association between patients and caregivers were performed.; Results: Among patients, we observed that 38.1% had symptoms that indicated anxiety and depression. The average score for practical social support was 3.15 ± 0.769 and that for emotional social support was 3.16 ± 0.79. As for fatigue, 14.3% of patients reported being 'extremely tired' and 14.3% reported that they engaged in all the activities they usually performed before the illness. Further, 57.1% presented stress, and of these, 66.7% were at the resistance stage, with predominance of psychological symptoms in 60.0%. The quality of life domain in terms of functional capacity (FC) presented a correlation with haemoglobin level (r = 0.581, p = 0.006) and non-anaemic patients presented better FC. Among caregivers, we observed symptoms that indicated anxiety and depression in 33.3% of the sample. Caregivers exhibited an average score of 2.88 ± 0.77 for practical social support and 3.0 ± 0.72 for emotional social support. Further, 14.3% reported being 'extremely tired' and 28.8% reported that they engaged in all activities that they usually performed before the patient's illness. When comparing the two groups (patients vs. caregivers), we observed that they presented similar results for the presence of anxiety, depression, and fatigue. Caregivers received less social support than patients did. Both groups presented similar predominance of stress levels; however, patients presented more predominance of psychological symptoms. With reference to quality of life, patients and caregivers presented similar results on the social aspects, vitality, mental health, and mental domains.; Conclusion: The mental health characteristics of patients and caregivers were similar, and within the context of dialysis for renal disease, both must undergo specific interventions.

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Experiences of caregivers of patients with metastatic cancer: What can we learn from them to better support them?

Purpose: Family caregivers of cancer patients often face strains within their role and report various unmet needs. The aim of this qualitative study was to examine metastatic cancer caregivers' experiences within their role.; Methods: A cross-sectional study using focus group interviews with caregivers of metastatic cancer patients (n = 17) recruited from an oncology hospital in Cyprus was conducted. Data were analysed following the content analysis approach with inductive coding for the development of themes.; Results: Content analysis identified four categories of themes, which were further divided into sub-categories: difficulties in their role as caregivers, impact of cancer diagnosis on interpersonal relationships, support and strength resources and unmet needs. Findings replicated existing evidence regarding caregiving difficulties and unmet needs in caregivers with a different cultural background and provided further evidence for similarities and variations within caregiving experiences relating mostly to caregiver-patient relationships. Caregivers also highlighted coping and support resources that they effectively use for better adjustment to their role.; Conclusion: The identified variations in experiences in relation to participants' characteristics, in addition to the information about preferred by caregivers coping and support resources provide a direction for future efforts to develop interventions for this population.; Copyright © 2017 Elsevier Ltd. All rights reserved.

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A tailored relocation stress intervention programme for family caregivers of patients transferred from a surgical intensive care unit to a general ward

Aims and Objectives: To develop and examine a relocation stress intervention programme tailored for the family caregivers of patients scheduled for transfer from a surgical intensive care unit to a general ward.; Background: Family relocation stress syndrome has been reported to be similar to that exhibited by patients, and investigators have emphasised that nurses should make special efforts to relieve family relocation stress to maximise positive contributions to the well-being of patients by family caregivers.; Design: A nonequivalent control group, nonsynchronised pretest-post-test design was adopted.; Methods: The study subjects were 60 family caregivers of patients with neurosurgical or general surgical conditions in the surgical intensive care unit of a university hospital located in Incheon, South Korea. Relocation stress and family burden were evaluated at three times, that is before intervention, immediately after transfer and four to five days after transfer.; Results: This relocation stress intervention programme was developed for the family caregivers based on disease characteristics and relocation-related needs. In the experimental group, relocation stress levels significantly and continuously decreased after intervention, whereas in the control group, a slight nonsignificant trend was observed. Family burden levels in the control group increased significantly after transfer, whereas burden levels in the experimental group increased only marginally and nonsignificantly. No significant between-group differences in relocation stress or family burden levels were observed after intervention.; Conclusions: Relocation stress levels of family caregivers were significantly decreased after intervention in the experimental group, which indicates that the devised family relocation stress intervention programme effectively alleviated family relocation stress.; Relevance To Clinical Practice: The devised intervention programme, which was tailored to disease characteristics and relocation-related needs, may enhance the practicality and efficacy of relocation stress management and make meaningful contribution to the relief of family relocation stress, promote patient recovery and enhance the well-being of patients and family caregivers.; © 2016 John Wiley & Sons Ltd.

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Processes of user participation among formal and family caregivers in home-based care for persons with dementia

Scandinavian health policy supports prolonged home-based care for people with dementia. User participation is expected to reduce family burden. The aim of this study was to explore how formal and family caregivers experience collaboration while providing home-based dementia care, with a focus on user participation. Seventeen qualitative in-depth interviews were conducted among formal and family caregivers in rural municipalities. The theme identified during this process was 'negotiating participation in decisions'. This theme was analysed using positioning theory. Concepts such as user participation are ambiguous, and caregivers negotiate positions during decision-making processes. Such negotiations are caused by the problematic relationships among patients' legal consent, undefined spokespersons and pragmatic care practices. These constant negotiations enable or obstruct collaboration in several situations. User participation as a concept might contribute to conflicts during collaborations. Dialogues about user participation that focus on consent and spokespersons could reduce the burden created by negotiations in practice.

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The moderating role of social support on depression and anxiety for gastric cancer patients and their family caregivers

Background: There is a consensus that cancer care should go beyond physical care as cancer patients and their family caregivers experience psychological burden, financial difficulty, as well as social relation issues. The current study aimed to investigate the moderating impact of social support on depression and anxiety of cancer patients and their family caregivers.; Methods: Gastric cancer patients and their family caregivers who visited a university medical center in Seoul were approached for participation in the study. Fifty-two pairs of adult patients and caregivers participated in the study. Along with demographic information and the physical condition of the patients, such as pre-operation cancer stage and the type of gastrectomy, social support, depression, and anxiety were measured for patients and caregivers, respectively.; Results: In the first round of analysis, patients' depression was associated with age, while patients' anxiety was related to income. On the other hand, caregivers' depression was not associated with patients' health and living arrangement. In the second round of analysis to examine the moderating effect of social support, patients' income and social support were related to depression and anxiety, but the interaction of income and social support was only observed for anxiety. For caregivers, no interaction effects were found. Social support decreased the negative effects of low income status on the patients.; Conclusion: While the income of the families with cancer cannot be adjusted in the short-term, their experience of social support can be managed by a proper support system. Diverse implications in medical settings are discussed.

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Contextual Exploration of a New Family Caregiver Support Concept for Geriatric Settings Using a Participatory Health Research Strategy

Family caregivers are the backbone of the long-term care support system within the home environment. Comprehensive caregiver support programs require collaboration and coordination within the system. A new public health concept, Vade Mecum, aims to harmonize and professionalize family caregiver support initiatives in geriatric care settings in the Euregion Maas-Rhine. Exploration of the new concept recently started in Germany to gain in-depth insight into current support and the needs of the geriatric care team and family caregivers. Within the context of an exploratory qualitative study, a participatory health research (PHR) strategy was applied to make optimal use of experience and knowledge from the system. Care professionals, engaged as co-researchers, were responsible for decisions about the research question, data collection methods and procedures of engaging family caregivers. A research team representing all professions within the geriatric department was formed. Research objectives were formulated and an appropriate mix of qualitative data collection methods consisting of interviews, focus groups and story-telling was chosen. Needs and expectations of the new concept, and practical solutions for involving family caregivers were discussed. A PHR strategy resulted in initiating a qualitative study in a geriatric care setting carried out by care professionals from the department. Knowledge was generated in a co-creative manner, and co-researchers were empowered. A comprehensive understanding of the system serves as a starting point for advancement of the new family caregiver concept.

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How continuity of care is experienced within the context of integrated palliative care: A qualitative study with patients and family caregivers in five European countries

Background: Patients with advanced diseases often experience deficient continuity of care. Although integrated palliative care promotes continuity of care, it is not clear how it can be optimized to improve continuity of care experiences.; Aim: To examine how relational, informational and management continuity of care are experienced by patients with advanced diseases and their family caregivers receiving care from several integrated palliative care initiatives in five European countries.; Design: We adopted a longitudinal qualitative study design including two interviews (interval 3 months) with patients and family caregivers focusing on how health care professionals responded to their needs. Interviews were audio-recorded and transcribed verbatim. Analysis involved a two-step qualitative content approach.; Setting/participants: A total of 22 integrated palliative care initiatives (established local palliative care collaborations) were selected in Belgium, Germany, Hungary, the Netherlands and the United Kingdom. We recruited 152 patients (63% cancer, 24% chronic obstructive pulmonary disease, 13% heart failure; life expectancy <1 year; mean age 68 years, 56% female) and 92 family caregivers (mean age 61 years, 66% female).; Results: Trusted relationships with a small number of key health care professionals to receive tailored care and easily access help were essential. Relational continuity was often deficient, especially with general practitioners. Although informational and management continuity was often lacking in care provision, collaborative integrated palliative care initiatives were related to consistent and coherent care.; Conclusion: Patients and family caregivers most likely experience continuity of care by having a small number of trusted health care professionals who are available, provide multidisciplinary care and regularly transfer information to all health care professionals involved. Optimizing continuity of care requires further integration of integrated palliative care initiatives with other health care professionals involved in the patients' care networks.

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What seems to matter in public policy and the health of informal caregivers? A cross-sectional study in 12 European countries

In Europe, informal caregiving is frequent and is expected to grow. Caregiving has an impact on caregivers' health, but its effect may vary according to the policies of support that are available to caregivers. The aim of this study was to assess the association between the policies of support to caregivers available in 12 European countries and the health of caregivers, considering separately the policies based on financial help and those based on training and other non- financial services. We used data from 13,507 caregivers from 12 European countries from the fifth wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) to build a path model. Poor health among caregivers was associated with living in a family-based care country (β = 0.50; 95% CI = 0.42-0.59), and with an increased extent of caregiving (β = 0.18; 95% CI = 0.15-0.22). Non-financial support measures seem to have a larger protective impact (β = -0.33; 95% CI = -0.38 - -0.28) on the health of caregivers than do financial support measures (β = 0.03; 95% CI = 0.01-0.04), regardless of the gender of the caregiver. According to our results, the currently available policies of support associated with better health among caregivers are those that: 1) provide them with some free time, 2) help them to deal emotionally with caregiving, and 3) give them skills to both improve the care situation and to deal with it better.;

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NSW Carers Strategy 2014-2019

The NSW Carers Strategy 2014-2019 outlines the NSW Government’s vision and commitment to improving the lives of carers over the five-year period.

The NSW Carers Strategy is a five year plan to improve the position of carers in NSW. The Department of Family and Community Services (FACS) led development of the NSW Carers Strategy with assistance from carers, the Ministry for Health and Carers NSW.

Carers NSW supports the vision, the five focus areas and the actions and commitments in the NSW Carers Strategy 2014-2019. 

The Strategy's vision is that: 

  • Carers and caring are respected and valued
  • Carers have the time and energy to care for themselves
  • Carers have the same rights, choices and opportunities as other members of the community

The commitments in the Strategy are based on practical actions and approaches that will make a difference in the lives of carers, in the five focus areas of:

  • Employment and education
  • Carer health and wellbeing
  • Information and community awareness
  • Carer engagement
  • Improving the evidence base

Over the next five years the NSW Carers Strategy will be implemented in collaboration with carers, the private sector, non-government organisations and government to achieve better and long lasting outcomes for carers. Carers NSW will play a key role in leading a number of the actions in partnership with other agencies.

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Supporting change in chronic disease risk behaviours for people with a mental illness: a qualitative study of the experiences of family carers

Background

People with a mental illness experience greater chronic disease morbidity and mortality, and associated reduced life expectancy, compared to those without such an illness. A higher prevalence of chronic disease risk behaviours (inadequate nutrition, inadequate physical activity, tobacco smoking, and harmful alcohol consumption) is experienced by this population. Family carers have the potential to support change in such behaviours among those they care for with a mental illness. This study aimed to explore family carers’: 1) experiences in addressing the chronic disease risk behaviours of their family members; 2) existing barriers to addressing such behaviours; and 3) perceptions of potential strategies to assist them to provide risk behaviour change support.

Methods

A qualitative study of four focus groups (n = 31), using a semi-structured interview schedule, was conducted with carers of people with a mental illness in New South Wales, Australia from January 2015 to February 2016. An inductive thematic analysis was employed to explore the experience of carers in addressing the chronic disease risk behaviours.

Results

Two main themes were identified in family carers’ report of their experiences: firstly, that health behaviours were salient concerns for carers and that they were engaged in providing support, and secondly that they perceived a bidirectional relationship between health behaviours and mental well-being. Key barriers to addressing behaviours were: a need to attend to carers’ own well-being; defensiveness on behalf of the family member; and not residing with their family member; with other behaviour-specific barriers also identified. Discussion around strategies which would assist carers in providing support for health risk behaviours identified a need for improved communication and collaboration between carers and health services accessed by their family members.

Conclusions

Additional support from general and mental health services accessed by family members is desired to assist carers to address the barriers to providing behaviour change support. Carers have the potential to support and extend health service interventions aimed at improving the chronic disease risk behaviours of people with a mental illness but may require additional information, and collaboration from services. Further research is needed to explore these constructs in a large representative sample

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Care work and care jobs for the future of decent work

Care work and care jobs for the future of decent work is an important contribution to the ILO’s women at work centenary initiative and to the process that the ILO is undertaking to guide its work for social justice as it advances into its second centenary. The women at work centenary initiative began by examining why progress in closing the gender gaps in the world of work had been so slow and what needed to be done for real transformation. The data, research, analysis and surveys all led back to care work. 

Care work – both paid and unpaid – is at the heart of humanity and our societies and economies are dependent on care work to survive and thrive. Across the world, women and girls are performing more than three-quarters of the total amount of unpaid care  work and two-thirds of paid care workers are women. Demographic, socio-economic and environmental transformations are increasing the demand for care workers, who are often trapped in low quality jobs. If not addressed properly, current deficits in care work and its quality will create a severe and unsustainable global care crisis and further increase gender inequalities in the world of work.

Who is going to provide for the increasing care needs in the future? Under what conditions will both unpaid and paid care work be provided? What policies can be put in place  to recognize, reduce and redistribute unpaid care work, create more and  decent jobs for  care workers, and guarantee care workers’ representation, social dialogue and collective bargaining? These are the questions that for the first time are addressed in a comprehensive manner, based on a wealth of research and data.

A high road to care work is within our reach, and the report charts a new road map of quality care work –one in which unpaid carers are able to enjoy the rewards of care provision without paying a high price for it, and care workers have access to decent jobs, which form the bases of quality care services.

The policy environment put forward to achieve good quality care work, grounded in  gender equality, is context specific but feasible. In all instances, care, macroeconomic, social protection, labour and migration policies need to be engineered so as to yield positive outcomes both for those in need of care and those who give care, whether for pay or not. It requires the engagement of governments, employers, workers and their organizations as well as representatives of unpaid carers and care recipients. By providing a  global picture of the care economy from the angle of the world of work, this report builds a compelling and evidence-based case for placing good quality care work as a priority in national policy agendas. Urgent action is needed to pursue the high road to care work if  there is to be a future of work for both women and men that is decent by design.

Video: Investment in the care economy needs to be doubled to avert a looming global care crisis, says a new ILO report Care work and care jobs for the future of decent work . Sweeping changes in policies should address the rising need for care and tackle the huge disparity between women’s and men’s care responsibilities.https://www.youtube.com/watch?v=zVbsM8IvZYY 

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Correlates of Perceived Social Support in Chinese Adult Child Caregivers of Parent Stroke Survivors

Background: Prevalence of stroke and traditional filial responsibility involve adult children in caregiving to their parent stroke survivors in China. Support resources are insufficient because of the shrinking size of family and the underdeveloped support system. Purpose: The aim of this study was to identify the correlates of perceived social support among adult child caregivers of parent stroke survivors in China. Methods: A cross-sectional correlational design was used in this study. A nonproportional quota sample of 126 adult child caregivers was recruited from Zhejiang Province, China. Data were collected at either the hospital stroke units or the respondents' homes using structured questionnaires of caregiving dyadic demographics and caregiving characteristics, 14-item Activities of Daily Living, 15-item Mutuality Scale, and 12-item Multidimensional Scale of Perceived Social Support. SPSS 17.0 was used for analysis. Results: Caregivers' mutuality, education, full employment or being retired, monthly income, having a co-carer, and having a father as the care receiver were significantly positively associated with caregivers' perceived social support. However, mutuality was not significantly associated with caregivers' perceived social support after the other factors were adjusted. Conclusions/Implications for Practice: Adult child caregivers with higher levels of mutuality, education, or monthly income; who are fully employed or are retired; who have a co-carer; or who are caring for a father perceived more social support. Nursing strategies and social policies need to be directed to enhance caregiver mutuality and support caregiving efforts.

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Randomized Trial of the Family Intervention: Telephone Tracking-Caregiver for Dementia Caregivers: Use of Community and Healthcare Resources

Objectives: To examine the effects of a telephone-delivered intervention, Family Intervention: Telephone Tracking-Caregiver (FITT-C), on community support and healthcare use by dementia caregivers.; Design: Randomized, controlled trial.; Setting: Academic medical center.; Participants: Dyads (n = 250) of distressed informal dementia caregivers and care recipients.; Intervention: Caregivers were randomly assigned to receive the FITT-C (n = 133) or telephone support (TS; n = 117). Both groups received 16 telephone contacts from a master's-level therapist over 6 months. The FITT-C intervention provided psychoeducation, problem solving, and other directive approaches based on assessment of critical areas (e.g., mood, behavior, family functioning, social support). TS provided supportive therapeutic strategies.; Measurements: Outcome variables were caregiver report of community support service use, number of visits to the emergency department (ED) for caregivers and care recipients, and hospital stays for caregivers during the interventions.; Results: Intervention groups did not differ in demographic characteristics, use of support services, or use of healthcare resources at baseline. Caregivers who received the FITT-C used community support services at end of treatment significantly more than those receiving TS (P = .02). FITT-C caregivers had a significantly lower rate of ED visits (rate difference 9.5%, P = .048) and hospital stays (rate difference 11.4%, P = .01) over the 6-month course of the intervention than TS caregivers. Care recipient use of community or medical resources did not differ according to group.; Conclusion: An entirely telephone-delivered intervention was effective in increasing caregiver engagement in community resources and reducing caregiver use of hospital-based healthcare resources. Results highlight the potential effect of FITT-C on healthcare use.; © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

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Discharge Planning and Teaching

This article is the fifth in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The fifth video can be accessed at http://links.lww.com/AJN/A79

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Administration of Subcutaneous Injections

This article is the second in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The second video can be accessed at http://links.lww.com/AJN/A75

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Usefulness of carer‐held records to support informal caregivers of patients with dementia who live at home

Aim: It is unclear whether carer‐held records (CHR) are useful for patients with dementia. In this study, we evaluated the usefulness of the CHR for patients with dementia at the municipal level. Methods: Candidates for CHR use in this study were informal caregivers of patients with dementia who lived at home in Kawanishi, Japan. CHR users were those who are involved in the patient's care and treatment, such as informal caregivers, family physicians, dementia specialists, care professionals, and care service coordinators, known as ‛care managersʼ in Japan. Collaborative meetings were held every month mainly to help users, especially care managers, learn how to effectively use CHR. We surveyed informal caregivers before and 1.5 years after the start of CHR use to evaluate whether CHR improved collaboration and information provision. The Zarit Caregiver Burden Interview and Dementia Behaviour Disturbance Scale were also administered. We divided the informal caregivers who continued CHR use for 1.5 years into two subgroups based on whether their care manager attended the collaborative meetings at least twice. In addition, we divided informal caregivers into three subgroups depending on their relationship to the patient: spouse, child, or daughter‐in‐law. Results: The study initially consisted of 201 informal caregivers. Among them, 74 informal caregivers continued CHR use for 1.5 years. The information provision score significantly improved after CHR use for all informal caregivers. The collaboration score significantly improved after CHR use only for informal caregivers whose care managers attended at least two collaborative meetings. The Zarit Caregiver Burden Interview score significantly improved after CHR use for daughter‐in‐law caregivers. The Dementia Behaviour Disturbance Scale scores did not significantly improve after CHR use. Conclusions: CHR were useful for informal caregivers of patients with dementia. However, care managers need to teach informal caregivers how to properly use CHR. 

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Perceptions of the care received from Australian palliative care services: A caregiver perspective

Background:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families.Objective: Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services.Method: Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire.Results: Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81).Significance Of Results: While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.

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Teaching Caregivers to Administer Eye Drops, Transdermal Patches, and Suppositories

This article is the third in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The third video can be accessed at http://links.lww.com/AJN/A76 

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Medication Management for People with Dementia

This article is the fourth in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The fourth video can be accessed at http://links.lww.com/AJN/A78 .

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Managing Complex Medication Regimens

This article is the first in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The first video can be accessed at http://links.lww.com/AJN/A74.

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The Experience of Transitioning to a Caregiving Role for a Family Member with Alzheimer's Disease or Related Dementia

Background: Alzheimer's disease is a chronic, debilitating disease that currently affects an estimated 5.5 million Americans. The majority are being cared for at home by family caregivers, who are known to have higher levels of burden than any other group of caregivers.; Purpose: The purpose of this phenomenological study was to explore the lived experiences of people who transition to the role of caregiver for a family member with Alzheimer's disease or a related dementia.; Methods: The study used purposeful sampling. Eight women and two men (mean age, 66.3 years) participated. Data were collected through in-depth semistructured interviews, along with observational field notes. Data were analyzed using a hermeneutic phenomenological approach.; Results: The average duration of caregiving reported by participants was five years. Seven themes were uncovered: something is wrong; journey to diagnosis: ambiguity and negative emotions; shifting roles and relationships: losses and challenges; seeking knowledge and support: solutions and frustrations; adapting to the topsy-turvy world of caregiving: finding purpose; preserving self without guilt; and finding a way out.; Conclusions: The study findings have implications for nursing education, research, and practice, with participants expressing needs for better communication and access to resources. The findings also suggest the importance of health care planning early in the disease process, and of raising awareness about nurses as a resource for family members

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Alzheimer's Disease: Individuals, Dyads, Communities, and Costs

Alzheimer's disease and related dementias (ADRD) affect over 5 million Americans. Over a typical disease course of 5-10 years, family caregivers provide the majority of the day-to-day hands-on on care for persons with dementia. Most caregivers enter this complex role with little training and inadequate household resources and they are tasked to navigate a fragmented health care system as well as a patchwork of community services. Our nation can and should do more to help family caregivers provide care in the home to their loved ones who suffer from dementia. We will all benefit if we design and implement a better system of care for persons with dementia. We will benefit financially as a nation, we will benefit morally as a community, and in case we have forgotten, we stand to benefit ourselves as we age and face our own aging brain. Building a system of care requires excellent science and engineering, but we also need creative approaches that design systems of care that are available nationwide because they are scalable and affordable. Most importantly, families need our help now. We need to move faster.; © 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society.

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Does group intervention have benefits on expressed emotion and social support in carers of persons with first episode psychosis?

Family interventions in chronic psychosis are well established through systematic reviews and meta-analyses. Such reviews report that family intervention might reduce relapse and improve compliance with medication and reduction in levels of expressed emotion (EE). However, most of the previous research has been conducted in caregivers with chronic schizophrenia, and the effects of family interventions in the early stages are largely unknown. Using a quasi-experimental nonequivalent comparison group design, we evaluated the effectiveness of a 7-session group intervention among 59 caregivers of patients with first episode psychosis. Outcome variables measured were carers’ EE and social support. Carers were recruited from inpatient psychiatry units of a tertiary mental health center in South India. Follow-up assessments were carried out after one and three months of intervention. Descriptive and inferential statistics were applied to the data. Carers in the intervention group reported reduction of EE and improvements in social support at a one-month follow-up assessment. However, these benefits were not sustained at the three-month follow-up. Overall, both groups showed significant changes in all outcome variables over the time period. 

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The Unmet Needs of Patients and Carers within Community Based Primary Health Care

Introduction: Community Based Primary Health Care (CBPHC) is positioned as the foundation of integrated health systems, intended to support broader goals of population health and health system sustainability. CBPHC moves beyond traditional primary care (a physician visit) to team based care that spans organizational boundaries (such as primary care clinics + community care services). At the core of CBPHC are patients and their informal carers (family and friends) who can inform ongoing reforms in this sector by sharing their experience, particularly in areas that require improvement. The objective of this paper is to share the unmet needs of patients and caregivers within CBPHC. Methods: This study is part of a broader programme of research called, implementing integrated care for older adults with complex health needs (iCOACH). Semi-structured interviews are being conducted with older patients with complex care needs and with unpaid, informal carers across multiple CBPHC sites in Canada (Ontario and Quebec) and New Zealand. Interviews captured the roles, characteristics and needs of patients and carers, and were audio-recorded and transcribed verbatim. Interviews were reviewed by multiple team members and a consensus codebook was created. The code "unmet need" was extracted from the patient and carer transcripts, and analyzed for core themes using an inductive approach. Results: Unmet needs culminated into three broad themes across patient and carer interviews: Accessing Care; Quality of Care; and Missing Care. Many patients accessed care within CBPHC, but the model itself tended to be spread across multiple settings and providers. Patients and carers also required access to services that were outside the CBPHC model. Challenges arose due to lack of transportation, out-of-pocket expenses, limited availability of assistive devices to support mobility, and long wait times. Quality of care and relationships were compromised if there was a language barrier, and when services were misaligned with the preferences of patients and carers. Components of care were often missing, such as respite care for carers, supports for instrumental activities of daily living (e.g., home maintenance and transportation), and supports to reduce social isolation. Conclusions: Due to the complex health and social needs of patients and carers, they often require access to multiple services and providers who are seldom situated under the same roof. Finding ways to integrate across organizational boundaries may reduce areas of unmet need. Furthermore greater attention to the social determinants of health within CBPHC may create a more holistic experience for patients and carers. Lessons Learned: CBPHC is intended to deliver holistic integrated care but when situated within a fragmented health care system, challenges for patients and carers persist. Limitations: Further comparisons need to be made between the unmet needs between patients and caregivers in Canada and New Zealand. Suggestions for future research: Next steps will include the development of a framework that describes the policy and organizational context, and provider configurations in each of the study jurisdictions. How these factors relate to different patient and carer needs and experiences, including areas of unmet need, will be explored to inform the development of person centered CBPHC models. 

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Mental Wellbeing of Family Members of Autistic Adults

Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer.

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What is the role of community at the end of life for people dying in advanced age? A qualitative study with bereaved family carers

Background: New public health approaches to palliative care prioritise the role of community at end of life. However, little is known about community support for the increasing numbers of people dying in advanced age. Aim: To explore the role of community at end of life for people dying in advanced age from the perspective of their bereaved family caregivers. Design: A constructionist framework underpinned a qualitative research design. Data were analysed using critical thematic analysis. Setting/participants: A total of 58 participants (19 Māori and 39 non-Māori) who cared for 52 family members who died at >80 years of age participated in semi-structured interviews. Results: A reduction in the social networks and community engagement of the older person was identified in the end-of-life period. Numerous barriers to community engagement in advanced age were identified, including poor health (notably dementia), moving into an aged care facility and lack of access due to transport difficulties. An active withdrawal from community at end of life was also noted. Carers felt limited support from community currently, but identified that communities could play a particular role in reducing social isolation and loneliness among people of advanced age prior to death. Conclusion: Our study provides strong support for public health approaches to palliative care that advocate building social networks around people who are dying and their family carers. However, it also indicates that strategies to do so must be flexible enough to be responsive to the unique end-of-life circumstances of people in advanced age.

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Family Caregivers' Reflections on Experiences of Assisted Suicide in Switzerland: A Qualitative Interview Study.

Context:Thousands of family members worldwide are annually involved in assisted dying. Family participation in assisted dying has rarely been investigated and families' needs typically are not considered in assisted dying legislation and clinical guidelines. Objectives: To explore family caregivers' reflections on experiences of assisted suicide in Switzerland. Methods: A cross-sectional qualitative interview study conducted in the Italian- and French-speaking regions of Switzerland. Interpretation and analysis were performed using qualitative content analysis. Results: Twenty-eight close relatives and family carers of 18 patients who died by assisted suicide in Switzerland were interviewed. Family members perceived their involvement in assisted suicide as characterized by five phases; 1) contemplation, 2) gaining acceptance, 3) gaining permission, 4) organization, and 5) aftermath. Families can participate in these phases at diverse levels and with varying degrees of involvement. Important triggers for families and patients for transition between phases include patients' experiences of their life-threatening illnesses and related treatments, their increasing awareness of approaching death, and family member recognition of their loved one's unbearable suffering. Participating in assisted suicide created further demanding tasks for families in addition to their role of caregivers. Conclusion: Families appeared to be involved in the preparation of assisted suicide along with patients, irrespective of their personal values regarding assisted dying. Support for family members is essential if they are involved in tasks preparatory to assisted suicide. Clinical guidelines and policies concerning assisted dying should acknowledge and address family needs.

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The Experience of Caring For or Living with an Individual with an Eating Disorder: A Meta-Synthesis of Qualitative Studies

Eating disorders (ED) has the highest mortality rate of psychiatric disorders and a high incidence of comorbidity. Because of the average age of onset, care typically befalls family members. However, despite the severity of the disorder and the burden placed on the family, research into the caregiving experience is still developing. Studies have shown caregivers of individuals with ED to experience high levels of distress, burden and expressed emotion. Recent theoretical models have underscored the importance of caregivers' responses as a maintenance factor for the ED, and family therapy has proved efficacious. However, the literature pertaining to the experience of family members living with or caring for an individual with an ED has not been systematically reviewed. This review aimed to synthesize qualitative studies relating to the caring experience and its impact, thereby gaining an understanding from the perspective of the individuals themselves. Relevant search terms were utilized to systematically search key databases. Twenty studies, with a total sample of 239 participants, met the inclusion criteria. Nine core themes emerged from the synthesis, forming the basis of an explanatory theory. The ED was found to have a pervasive impact upon family members, mediated by a number of factors. Cognitive appraisals affected the caregiving experience and responses to the individual. The experience of caregiving was continually reappraised leading to a process of adaptation. The majority of studies identified unmet carer needs. The implications of the findings are discussed with reference to existing theoretical models and in terms of clinical practice. Copyright © 2015 John Wiley & Sons, Ltd. Key Practitioner Messages Carers experience a significant amount of guilt and distress once they have found out about their loved one's eating disorder., Across the studies, there were many themes of unmet need for carers., Siblings have often been overlooked by both clinicians and researchers., Interventions for people with eating disorders should also acknowledge carers and close family members.

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How should we talk about palliative care, death and dying? A qualitative study exploring perspectives from caregivers of people with advanced cancer

Background: Health professionals commonly underestimate caregiver needs for information about palliative care, death and dying and may feel poorly prepared to discuss these issues. Few studies have sought caregiver perspectives of these communication practices. Aim: To explore caregiver perspectives on communication about death, dying and the introduction to palliative care, with a view towards a series of caregiver-informed recommendations for use in clinical practice. Design: Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Setting/participants: Purposively sampled, English-speaking, adult caregivers of people with advanced cancer (n = 25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Australia. Results: Caregivers reported wanting routinely available written resources about palliative care, supplemented by conversations that are ideally staged overtime. Education about the tasks of palliative care should be separated from referral process, allowing time for gradual adjustment, and re-visiting discussion to enable patients and families to take some control in the process of transition. Once death is imminent, carers wanted health professionals to clarify how much they want to know about the dying process; provide spoken acknowledgement when death is close; include the words 'death' and 'dying'; use direct language, avoiding euphemisms; and communicate about death with patient present. Conclusion: This study is among the first to directly address caregiver perspectives of communication about death, dying and the introduction to palliative care. The recommendations derived from caregiver perspectives build upon existing guidelines and offer health professionals some preliminary considerations around how to undertake these important communication tasks in future. 

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Factors influencing practitioner adoption of carer-led assessment in palliative homecare: A qualitative study of the use of the Carer Support Needs Assessment Tool (CSNAT)

Introduction: Informal caregivers play a pivotal role in supporting patients approaching the end of life. The Carer Support Needs Assessment Tool (CSNAT) is designed to facilitate person-centred assessment and support through a process that is practitioner-facilitated, but carer-led. This study explored practitioners’ experiences of implementing the CSNAT in palliative homecare. Methods: We conducted qualitative interviews/focus groups with 20 practitioners in one UK hospice homecare service (18 nurses, two healthcare assistants) before and after the implementation of the CSNAT. Thematic analysis of the data was underpinned by framework analysis. Results: Not all practitioners appreciated that using the CSNAT required a shift towards a more person-centred approach to assessment; consequently they tagged the tool onto their existing practitioner-led practice. Practitioners who did use the CSNAT as intended were able to act as role models and support their colleagues in making this transition. Practitioners’ comments revealed a number of contradictions: 1) Most felt that they ‘already do’ identify carer support needs, but feared using the CSNAT could increase their workload; 2) some worried about introducing the CSNAT ‘too soon’, but recognised that it was ‘too late’ once patients were close to the end of life; 3) whilst practitioners stated ‘they were there for the family as well as the patient’, care provision was overtly centred around patients. Conclusion: This study provides vital insights into barriers and facilitators to implementing the CSNAT as part of a person-centred approach to assessment. The findings identified the training and support required to help practitioners make this transition to this new way of working.

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The burden perceived by informal caregivers of the elderly in Saudi Arabia

OBJECTIVES: The objective of this study was to discover the characteristics of informal caregivers of elderly patients; to determine the socioeconomic, psychological, and physical consequences facing informal caregivers; and to measure their burdens and needs. MATERIALS AND METHODS: This study was a cross-sectional survey of informal caregivers of elderly patients. Participants were recruited from different hospitals and primary care clinics in Riyadh, Saudi Arabia. For an intended sample size of 384 caregivers, a multistage sampling was used. A self-administered questionnaire was used to collect data. Data analysis included student's t-test and ANOVA to test for statistical significance. RESULTS: The study included 315 caregivers of elderly patients. Over half of the elderly patients were female (55.9%) and over 70 years old (65.7%); about 31% had chronic diseases or disabilities, which represented the majority of health problems reported by the elderly population. Most of the caregivers were family members (87.9%), young (43.8%), female (52.7%), unemployed (54.6%), and unmarried (58.1%). Most caregivers suffered from musculoskeletal problems (78.1%). The mean Zarit Burden Interview score was 31.3, which indicated a moderate burden. More than half of caregivers requested blood pressure (55.6%) and blood sugar measuring devices (53%). Three quarters (74.9%) of the caregivers wanted educational training to cope with emergencies. Most caregivers expressed a need for frequent healthcare for themselves (58.4%) and a home health visit service (72.9%) to support them in the care of their elderly. CONCLUSIONS AND RECOMMENDATIONS: Mobilization of resources in locations where these carers of the elderly live are greatly needed. In addition, health authorities should provide devices and essential training to manage the common problems and emergencies that informal caregivers have to deal with. Moreover, caregivers need follow-up supervision by a home visit team. Further studies are required to guide the implementation of the above advice.

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Negotiating the care-giving role: family members' experience during critical exacerbation of COPD in Norway

Healthcare policies often state that complex conditions are to be treated outside hospital in various forms of public-private partnership. Chronic obstructive pulmonary disease ( COPD) is a progressive illness that includes episodes of serious acute exacerbations characterised by extreme breathlessness. There is limited knowledge about COPD exacerbations from the perspective of family caregivers and implications of the changing boundary between hospital care and care at home. In this paper, we explore how caregivers negotiate their role as caregivers with patients and healthcare professionals during acute exacerbations. We conducted 10 qualitative interviews with family caregivers of COPD patients in 2011, all were spouses over the age of 60. The participants were recruited through the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. Data were interpreted using thematic analysis. The caregivers described a lack of understanding and support from health professionals in some situations. They shouldered considerable responsibility, but were not always acknowledged as competent carers by professionals. Caregivers had to balance their involvement. They noted that they could lose the professionals' co-operation if their involvement was perceived as interfering or preventing the professionals from exercising their expertise. However, by not sharing their personalised knowledge about the patients, they risked that the professionals would not understand the severity of the exacerbation, which could undermine their own ability to maintain a sense of safety and control. The negotiations caregivers participated in and the uncertainty they experienced shed new light on the complexity of their role, and the discrepancy between practice and ideals in healthcare policy regarding collaboration of care. It is crucial to develop further knowledge about structural, interactional and communicational facilitators and barriers for reaching shared understandings and facilitating mutual trust in these demanding situations. 

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The use of social healthcare resources and informal care characteristics care of immobilised homecare patients

Objective: To describe the use of social healthcare resources by immobilised patients and informal care characteristics and the level/degree of satisfaction with home care services.

Method: Descriptive observational study carried out in primary care. The target group were 369 randomly selected immobilised home care patients in the area of Albacete, Spain. The variables included were: socio-demographic data of the patient and carer; the use of social healthcare resources; perceived social support (DUKE-UNK questionnaire); family function (APGAR questionnaire); nursing care and home care services satisfaction (SATISFAD 10 questionnaire).

Results: 66.9% of immobilised homecare patients have high dependency and 18.6% have bedsores. The majority of informal carers are women (83.1%) with an average of 57.7 years of age (DE 15.1). The average intensity of care is 15.7 hours per day (DE 8.5) and the average length of care is 5 years. The average number of visits from nurses per month is 2.1 (DE 2.1), although this measurement is higher in patients with bedsores or multiple diseases. The most widely used social health care resources are telephone care (34.2%) and home care (20.3%), for which 65.6% of immobilised homecare patients receive dependency benefits. Overall satisfaction with home care is of a high degree.

Conclusion: Musculoskeletal disorders is the main reason for immobilisation in home care patients. Most informal carers are older women. The length and intensity of care is high and the main support comes from healthcare professionals. Patients make limited use of social healthcare resources.

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"I wanted to learn how to heal my heart": family carer experiences of receiving an emotional support service in the Well Ways programme

Family carers of people with mental illness provide an immense contribution to society in caring for mental health consumers. However, carers can experience substantial burdens and poor health outcomes themselves. Recognition of their needs for education and support has led to the development of a range of family education programmes. Throughout Australia, the Mental Illness Fellowship Australia offers the Well Ways programme, a group-based, family-to-family, education programme that provides information and aims to increase carers' capacity to care effectively for themselves, their families, and the mental health consumers. This paper describes a qualitative evaluation of an emotional support service piloted in a Well Ways programme in rural Queensland, Australia. The pilot service comprised individual emotional support offered to family carers attending the weekly Well Ways group education programme. Six of eight family carers who received the emotional support engaged in semistructured interviews exploring their experience of receiving the support. Three themes emerged from their experience: dealing with difficult times, connecting through shared experience, and exploring different options. Family carers found the emotional support beneficial, and reported that it enhanced their capacity to manage their own well-being, as well as their caregiving roles.

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General practitioners, primary care and support for carers in England: can training make a difference?

As a part of the national carers' strategy, the Department of Health commissioned six pilot workshops spread across England for General Practitioners (GPs) and other primary healthcare workers. The six workshops were held during September and October 2009, arranged by the Royal College of General Practitioners and planned in consultation with the Princess Royal Trust for Carers. The workshops were delivered by one of two GPs and by a carer. The Department of Health commissioned an evaluation of the workshop programme. This paper reports on the attitudes towards and knowledge of carers by GPs and other primary care workers, such as community matrons, practice nurses, healthcare assistants, practice managers and receptionists. It also tracks changes over time from the questionnaire responses pre- and post-workshop and 3 months later in the GPs' and other primary care workers' response to carers. Prior to the workshops, GPs and other primary care workers saw primary care as having a significant role in directly assisting carers, especially with emotional support and in signposting to other services. However, there was a lack of knowledge about issues facing carers, limited confidence in assisting carers and few services within the primary care teams directly focussed on carers. The workshops were regarded positively by those who attended, and the evaluation found that there was a positive impact with GPs and other primary care workers reporting specific actions they had taken post-workshop to assist carers, greater confidence and awareness in working with carers, and increased knowledge about carers. The paper concludes by recommending how the pilot programme might be rolled out more widely.

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Organising and supporting direct payments

This case study gives an example of a well-established direct payments service, managed by Hampshire County Council in partnership with users of direct payments, carers and voluntary sector support agencies.

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Joint declaration on post-diagnostic dementia care and support

A shared approach to improving the care and support for people with dementia, their families and carers receive following a diagnosis. The declaration sets out: a shared commitment to joint action across government, health, social care, the third sector and all other relevant partners; the ambition to deliver better quality post-diagnostic care; and the need to deliver integrated and effective services that meet the needs of people with dementia and their families and carers.

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Inform with care: ethics and information in care for people with dementia

Good care is often positioned as a natural by-product of the widespread availability of good information (‘inform to care’). This paper contests this association through empirical investigation of the information–care relationship in the context of dementia care. It combines critiques of the ‘informatisation’ of care with insights from the epistemological dimension of care ethics to argue that information is better understood as ‘situated knowledge’ and that the relational practices of care involve the mobilisation and negotiation of different types of knowledge that are specific to caring relationships and contexts. The argument is illustrated through the three cases of caring relationships taken from a qualitative evaluation of an information and support course for carers of people with dementia. These cases highlight the specificity of caring relationships and the very different consequences of introducing new forms of knowledge into each relationship and provide evidence for the need for a paradigm shift where the idea of informing to care is replaced by a process of informing with care. In the former, information is understood as separate and outside of care, while nevertheless acting upon it to produce care; in the latter, information is understood as inextricably linked to care (with care) but not in any predetermined or uni-directional sense. The paper identifies key interlinked components of the ‘inform with care’ approach derived from the cases discussed.

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Developing supportive care for family members of people with lung cancer: a feasibility study

Purpose: Families provide crucial support, yet their own needs often go unrecognised and, as a consequence, remain unmet. The purpose of this study was to evaluate a newly developed supportive intervention for family members of patients with lung cancer.

Materials and methods: A consecutive convenience sample of 25 family members of people with lung cancer received an individualised supportive intervention from a support nurse over a period of 12 weeks. This involved in-depth assessment followed up with a tailored plan of ongoing support to address informational, emotional, social and practical needs. A concurrent mixed method design explored perceptions and outcomes of those receiving the intervention and assess its appropriateness, acceptability and feasibility. Data were collected through a semi structured telephone interview with family members, and support nurses maintained a contact log. A questionnaire addressed emotional well-being [general health questionnaire (GHQ-12)], quality of life [quality of life family version (Family QoL)] and needs for care [family inventory of needs (FIN)]—at baseline and week 12.

Results: Family members perceived they had derived benefit from the intervention. Certain elements clearly emerged as important for participants, including being listened to by someone who could facilitate emotional expression, being provided with individually tailored information and receiving practical help and advice. Outcomes mapped to five main areas: information needs, communication between family members, emotional well-being, being supported and facilitating family member’s role. There was a trend for more needs to be met and quality of life and emotional well-being to improve at week 12.

Conclusion: This study has demonstrated that a supportive intervention for family members of patients with lung cancer can be delivered to good effect by experienced cancer nurses. The active components of the intervention have been distinguished and provide the basis for development of a larger sufficiently powered trial.

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Older people from white-British and Asian-Indian backgrounds and their expectations for support from their children

The importance of ties between older people and their children has been widely documented as a fundamental component in the provision and receipt of support. While the reference to such support is usually made in a benign manner, it is overly simplistic to assume that support provided by family members will always and necessarily lead to positive outcomes for older people. A person's perception of the adequacy or quality of support is inevitably influenced by his or her expectation of the type, frequency and source of support preferred or required. Most existing British research on the family support of older people has concentrated on those from the white‐British majority with little cross‐group comparisons. This article reports on in‐depth qualitative research with 17 and 21 older people from white‐British and Asian‐Indian backgrounds respectively. It demonstrates how gender, ethnicity, migration history and a range of other factors interweave in complex manners to affect individuals' expectations for support from their adult children. The findings reveal commonalities and differences within and between groups and demonstrate that the association between expectations of support and resultant sense of well‐being is complicated and is often conditional. Stereotypes within and across groups need to be examined given the observation that while familial norms may be played out differently in different cultural contexts, individuals make sense of and rationalise their expectations for support to take into account the dynamics of changing structures and attitudes.

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Towards a culturally acceptable end-of-life survey questionnaire: a Bengali translation of VOICES

Aim To assess the cultural acceptability and appropriateness of an English end-of-life survey questionnaire translated into Bengali for use in east London.

Study design Group discussions with informal carers (n=3 groups) and professionals (n=1 group).

Sample and setting Informal carers within a Bengali-speaking community (n=26) in east London participated in three groups discussions led by three community workers trained in interviewing procedures. These data were followed up with one group discussion with bilingual health and social care professionals (n=6).

Analysis Data subject to content analysis.

Results Participants were supportive of the development of the translated questionnaire. However, attention should be paid to vocabulary, shared meanings, cultural equivalence and the ways people conceptualize health and illness, and death and dying.

Conclusions These findings, together with participants’ views on the administration of the questionnaire, will prompt revisions to the research approach when targeting ethnic and cultural groups in the future.

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Re-visioning social work education: an independent review

Norman Lamb, Minister of State for Care and Support at the Department of Health invited the Chair of Skills for Care to undertake this Independent Review, in the context of the changes to social work practice brought about by the Social Work Task Force and Social Work Reform Board, and their own recommendations for social work education. The review is based on evidence invited from as wide a field as possible, from the UK and internationally, of all those who have a stake in the education of social workers, including service users and carers, employers, educationalists, social work practitioners, students and others. Professor David Croisdale-Appleby considers whether social work education is ideally structured to best serve the changing nature of the profession. 

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The keys to life: improving quality of life for people with learning disabilities

The same as you?’ (2000) was the original 10-year programme designed to meet the needs of people with learning disabilities in Scotland. It was highly successful in shifting the balance of care to support more people to live in the community. This new 10-year strategy sets out a vision for improved partnership working to deliver better outcomes for people with learning disabilities, and their families and carers. It has more than 50 recommendations, most of which are aimed at health. The strategy also covers commissioning of public services; independent living; shifting the culture and keeping safe; breaking stereotypes; the needs of people with profound and multiple disabilities; criminal justice; and complex care. It includes good practice examples and case studies. Appendices include a glossary and weblinks to key organisations.

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Life with two hats: part 1

Part 1 of a video by Viviana Fain-Binda for carers of people with dementia.  One carer talks about how she coped when her partner was diagnosed with dementia and how using a day care centre was able to support her.

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Parents caring for adult children with physical disabilities: the impact of hope and closeness on caregiving benefits

In the present study, we examined 82 parents of adult children with physical disabilities. The parents described the benefits of caregiving, and reported positive feelings about their involvement in caregiving as well as a sense of personal growth as a result of caregiving. When parents perceived caregiving as causing less emotional strain (subjective burden), and when they felt higher levels of closeness with their offspring, and expressed higher levels of hope, they were more likely to indicate that caregiving yielded benefits. In the discussion, we focus on the importance of developing closeness and hope among parents who care for their adult offspring with physical disabilities. The implications of this conclusion for social work intervention are also discussed.

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The cost of unpaid caring

Caring takes time and, as we know, time costs. With an ageing population that is living longer, there is less time and less money to be allocated to older people. This article looks at the role and contribution of informal carers to the social care system, and says that more should be done to recognise their skills and knowledge, and better support should be given to help prevent their ill-health, thus helping to reduce the rising cost of formal care to local social services. 

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Community provision for informal live-in carers of stroke patients

Stroke is common and disabling. Most stroke patients are cared for at home by informal carers. This study of informal carers of stroke patients measured service provision and satisfaction with different aspects of community care received by these carers. Dissatisfaction was expressed with training and information provision for carers, communication between carers and community services, speed of response and coordination of community services, and perceived support. Problems of information provision were most marked for those patients with most disability and/or older carers.

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Dealing with chemotherapy-related symptoms at home: a qualitative study in adult patients with cancer

Given that chemotherapy treatments are done mostly in an outpatient setting, patients with cancer must deal with treatment-related symptoms mainly at home. Evidence suggests that they often feel left alone or unprepared to do so. This qualitative study explores how patients deal with chemotherapy-related symptoms in their home, which factors and ideas influence their self-management and what role professional caregivers play. One-off, semi-structured interviews were held with 28 adult patients with cancer being treated with chemotherapy. Using a Grounded Theory approach, we cyclically collected and analysed data to come to a thorough understanding of the major conceptual themes and their interconnections. Dealing with chemotherapy-related symptoms involves a process of experiencing and learning how side effects unfold over time and how to deal with them. Patients express very personal symptom experiences and symptom-management styles, which are shaped by personal factors (e.g. coping with cancer and cancer treatment, perceived level of control) and environmental factors (e.g. professionals' attitude, information resources). Improving symptom self-management support requires active exploration of the personal symptom experience and symptom-management style. Professional care should be tailored to the patient's perspective and should address personal and environmental determinants of their behaviour.

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The long-term consequences of partnership dissolution for support in later life in the United Kingdom

There has long been an interest in the United Kingdom about whether and how changes in family life affect support for older people, but nevertheless the consequences of partnership dissolution for late-life support have been little researched. Using data from the British Household Panel Study (1991–2003), this study investigated the longitudinal association between partnership dissolution and two types of support for 1,966 people aged 70 or more years: (i) informal support from children in the form of contacts and help (e.g. household assistance including care), and (ii) formal support from community care services (i.e. health visitor or district nurse, home-help and meals-on-wheels). The paper also examines the level of reported support among: (i) all parents aged 70 or more years and (ii) 1,453 unpartnered parents in the same age group (i.e. those lacking the most important source of support in later life: a spouse). We found diversity in the experience of partnership dissolution in the past lives of people aged 70 or more years. Patterns of support varied by the respondent's age, whether partnered, the timing and type of partnership dissolution, and by gender, having a daughter and health status. Overall, however, partnership dissolution did not show the expected detrimental relationship with later-life support. Health needs and increasing age were strongly associated with increases in contact and informal and formal help, regardless of family history.

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Global action against dementia: G8 Dementia Summit communique

The G8 Health Ministers met at the G8 Dementia Summit in London on 11 December 2013 to discuss how to shape an effective international response to dementia. They note the socio-economic impact of dementia globally, and that costs are expected to increase significantly if therapies to prevent dementia and improve care and treatment are not developed and implemented. This communique concerns issues relating to research and innovation; leadership, cross-sector partnerships and knowledge translation; supporting people affected by dementia and their carers; and reducing stigma and fear. The communique is signed by the G8 Health and Science Ministers (from the UK, Canada, France, Germany, Italy, Japan, Russia and the United States). They conclude that they will continue their efforts to work together in line with the commitments in the Declaration and Communiqué, but recognise that dementia is an issue which affects people in countries throughout the world. Consequently, they encourage  all countries and multilateral organisations to come together and take action to reduce the risk to health and to economic development which dementia currently presents. 

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Carer experiences of life after stroke – a qualitative analysis

Aims and objectives. Carers' experiences of caring for a stroke survivor were explored, including reactions and changes in their lives.

Method. A phenomenological approach was taken to the collection and analysis of data. Semi-structured interviews lasting an average of 43 min were carried out with nine informal carers in their own homes. All were married to someone who had survived a stroke.

Results. An overarching theme emerged, entitled: ‘lives turned upside-down’. It took time for participants to understand the long-term impacts of stroke. Carers experienced increased caring and domestic workloads alongside reduced participation and altered expectations of life. They found emotional and cognitive changes in their partners particularly distressing, and would have valued more information and help with adjusting to the increased emotional, physical and cognitive workload of caring.

Conclusions. It is important to support carers of people who have survived a stroke in adjusting to their changed lifestyles. This may affect their quality of life as well as sustainability of caring, and requires further research.

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Promoting participation of people with dementia in research

Dementia is a neurodegenerative disorder that can have a severe effect on the quality of life of individuals with the condition, and can place considerable strain on informal carers and healthcare systems. Research is required to identify ways to prevent or delay the onset of dementia. The government is committed to dementia research, yet funding for dementia research is eclipsed by funding for research into other conditions. Moreover, dementia research can only progress if individuals with the condition participate in research studies. This article discusses barriers associated with research into dementia and describes a UK government initiative, Join Dementia Research, which supports research participation for people with dementia.

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Carers in the region: a profile of the North West

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the North West region. In 2001 there were 722,122 carers in the North West region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the North West region.

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A randomized controlled trial of a hospital at home service for the terminally ill

This study evaluated the impact of a Cambridge hospital at home service (CHAH) on patients' quality of care, likelihood of remaining at home in their final 2 weeks of life and general practitioner (GP) visits. The design was a randomized controlled trial, comparing CHAH with standard care. The patient's district nurse, GP and informal carer were surveyed within 6 weeks of patient's death, and 225 district nurses, 194 GPs and 144 informal carers of 229 patients responded. There was no clear evidence that CHAH increased likelihood of remaining at home during the final 2 weeks of life. However, the service was associated with fewer GP out of hours visits. All respondent groups rated CHAH favourably compared to standard care but emphasized different aspects. District nurses rated CHAH as better than standard care in terms of adequacy of night care and support for the carer, GPs in terms of anxiety and depression, and informal carers in terms of control of pain and nausea. Thus whilst CHAH was not found to increase the likelihood of remaining at home, it appeared to be associated with better quality home care.

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Seeking respite: issues around the use of day respite care for the carers of people with dementia

Ageing in Place policies have transferred responsibility for many frail elderly people and those living with dementia from residential to in-home care. Despite this placing a greater obligation on families, in Australia carers continue to under-use day respite services. This qualitative design study identified issues around the use of day respite care from the perspective of the family carer, focusing on barriers to attendance and strategies to facilitate attendance. Telephone interviews were held in 2007 with Tasmanian carers whose family member refused to attend day respite care (ten carers) and those whose family member attended (17). Carers considering day respite care were often overwhelmed by the quantity of information, confused about the process, and worried about the recipient's safety in an unfamiliar environment. They felt anxious about public acknowledgement of the condition leading to fear of embarrassment. Day respite care users appreciated the break it provided them and the opportunity for their family member to socialise. To facilitate a greater uptake of day respite care, reliable information sources and strategies to help carers deal with the emotions they face on a daily basis, together with a wider social acceptance of dementia, are important. Furthermore, carers need an opportunity to talk with others, enabling them to gain support from those who have successfully introduced a family member to day respite care.

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Training nurses to support carers of relatives with schizophrenia

Carers have an enormous amount of responsibility for the welfare and management of people with a mental illness in Britain, and many require help if they are to continue caring. Mental health nurses may be in a key position to offer support, but they are often unclear of what is required and how it should be delivered. Existing UK nurse-led psychosocial interventions for families often focus on the needs of the patient rather than the carer. This article describes a needs-led support service that has been designed for carers whose relatives are diagnosed with schizophrenia. It recognizes the importance of a collaborative partnership between carers and nurses. In 2000, 10 mental health nurses were trained to deliver this support to carers. An evaluation is currently underway. This article outlines the principles of the training programme and how it might enable nurses to meet the carers' needs.

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Carers in the region: a profile of the West Midlands

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the West Midlands region. In 2001 there were 556,689 carers in the West Midlands region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the West Midlands region.

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A 10-year plan for quality living for people with disabilities and their carers

Background: The concerns of older carers of an adult with disabilities have been well documented. The sudden incapacity or death of the carer can result in a crisis response rather than a planned transition to a chosen sustainable alternative care arrangement for the person with disability. Building on previous ‘Futures Planning’ projects, the aim of this project was to enrich the lives of people with disabilities and their carers whilst ensuring that their wishes for the future are documented to provide security.

Materials and Methods: This article reports on information sessions and workshops that were held for people with disabilities, their carers and staff, and the training sessions for staff for this project.

Results: The sessions underlined the fact that people with disabilities want to enjoy the same experiences that most other people enjoy. Drawing on the ideas and suggestions from participants, the ‘Futures Planning’ documents were modified to meet the aims of the Quality Living project, making them suitable for planning for quality living for the carer and the person with a disability for the next 10 years.

Conclusions: Findings supported the concept that planning allows people with disabilities and their carers to take steps to achieve their dreams.

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The experience of caring for older people with dementia in a rural area: using services

Reports on findings from the carer component of the Gwynedd Dementia Study. It is based on carer interviews, using quantitative and qualitative data. It describes the carers, their perceptions of their dependents' problems, the common challenges they face, their experiences of formal and informal support and, with reference to the literature, identifies implications for policy and practice. Levels of formal service inputs were low, but most of the carers appeared to receive the services they needed. Problems are primarily associated with crisis support and long-term care is accepted reluctantly. Suggests that community care dementia specialists could play a supporting role for carers.

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Informal care: the views of people receiving care

Informal care is perceived to be the best option for people who require assistance to look after themselves. National and international studies of informal care have focused on the carer, not on the care provided, or the needs and experiences of the care recipients. In the present study, 55 people receiving informal care (21 males and 24 females, mean age = 67.6) were surveyed to determine the type of assistance that they receive, perceptions of the quality of their care, feelings about being looked after by a carer and their perceptions of the services which would be useful. A random sample of 531 households were selected as part of a larger study into informal care in the west of Ireland. A total of 98 carers were identified and 55 of the people they looked after were well enough to participate in the study. Over two-thirds of carers assisted with household chores (e.g. cleaning, preparing meals and shopping). Other activities which carers assisted with included keeping the person safe from household accidents (62%), personal care (42%), and dressing and undressing (31%). Whilst most were very satisfied with the quality of care, a minority reported dissatisfaction, and stated that their carer showed signs of anger and frustration. Common concerns related to the health of the carer, their safety when the carer is not available and the cost of being cared for. Financial support for the person receiving care and the carer were the main priorities for these individuals. The present study points to a need for greater involvement of care recipients in planning services relating to informal care, and support and access to health professionals for people receiving care. People receiving care are also concerned about the level of financial support for themselves and their carers.

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The development and validation of a quality of life measure for the carers of people with Parkinson's disease (the PDQ-Carer)

Background: Parkinson’s disease (PD) can have substantial effects not only on the quality of life of those diagnosedwith the condition but also upon the informal carers who provide support and assistance to them. However, to date no well-validated carer specific quality of life measure has been developed for carers of people with PD.

Objective: This paper documents the development and validation of a PD specific carer quality of life scale.

Methods: In depth interviews were undertaken with carers of people with PD. The interviews were transcribed and analysed thematically to derive a pool of potential items for the questionnaire. A pilot survey was used to refine the initial version of the questionnaire. A developmental survey was undertaken and the results analysed to produce the final 29-item measure. A validation survey was then undertaken to assess the construct validity and reliability of the measure.

Results: Survey results suggest a 29-item questionnaire tapping four dimensions of quality of life (Social and Personal Activities, Anxiety and Depression, Self care, and Strain). Internal consistency reliability was found to be high for all domains. Data completeness was high. Construct validity (assessed by correlations with a generic measure of quality of life) confirmed prior hypotheses.

Conclusion: The 29-item Parkinson Disease Questionnaire for Carers (PDQ-Carer) is a short, meaningful quality of life instrument, which taps areas of specific salience and concern to PD carers.

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Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis

Aims: To understand the perceptions, needs and experiences of patients with Idiopathic Pulmonary Fibrosis.

Background: Idiopathic pulmonary fibrosis is a progressive interstitial lung disease, with a mean life expectancy similar to some forms of cancer of 2–4 years from diagnosis. Unlike the cancer literature, which is rich with studies exploring the needs of their disease group, few publications exist on patient needs with this severe fibrotic lung disease.

Design: A Qualitative study which took place between 2007–2012.

Methods: Seventeen patients with a multidisciplinary team confirmed diagnosis of Idiopathic Pulmonary Fibrosis, with moderate to advanced disease severity and six of their informal carers were interviewed. An interview topic guide was developed by the researchers and service user group. The interviews were audio-recorded, semi-structured and took place at a regional respiratory and lung transplant centre in North West England. Interviews were transcribed verbatim and data analysed using Framework Analysis.

Findings: Three main themes were identified: ‘Struggling to get a diagnosis’; ‘Loss of the life I previously had’; and ‘Living with Idiopathic Pulmonary Fibrosis’. Patients reported struggling to get a diagnosis and coping with a life-limiting, rapidly progressive illness with no good treatment and few support structures.

Conclusions: There is an urgent need for a better understanding of the difficulties faced by people with Idiopathic Pulmonary Fibrosis and their carers. This can be used to develop better supportive care in the United Kingdom and ultimately improve the quality of life of these patients.

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Family carers in stroke care: examining the relationship between problem-solving, depression and general health

Aims and objectives.  The purpose of this article is to describe the problem-solving abilities of Hong Kong family carers looking after a stroke patients at home and report the relationships between their perceived problem-solving abilities with their depression level, general health status, and the functional recovery of stroke patients.

Background.  Previous research on supportive interventions for caregiving in stroke care suggests that enhancing carers’ problem-solving abilities is useful. Nevertheless, not much is known about the relationship between carers’ problem-solving abilities and their physical and psychosocial health and there is notably little work that has been done with the Chinese population.

Design.  A cross-sectional and correlational design was used.

Methods.  A convenience sample of 70 family carers, who were the main carers of stroke patients at home, during the first three months poststroke was recruited to complete a self-report questionnaire.

Result.  Significant correlations were found between the family carers’ global perceived problem-solving abilities and higher level of depressive symptoms (r = 0·35, P = 0·01) and poorer perceived health (r = 0·50, P = 0·01) as measured using the Center for Epidemiological Studies – Depression Scale and General Health Questionnaire. Among the three subscales of the Problem-Solving Inventory, problem-solving confidence showed the highest correlation with these variables. The functional ability of the stroke patients as measured using the Modified Barthel Index (MBI) was not associated with any variables.

Conclusion.  Findings of this study suggest that perception of confidence is a key factor in appraisal of problem-solving among Chinese family carers, which raises questions for future research about the impact of cultural influences on designing and measuring interventions.

Relevance to clinical practice.  The study has implications for nursing and health care practice and for developing interventions targeted at building self-confidence among Chinese carers.

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Carers' experiences of assertive outreach services: an exploratory study

Background: Recent government policy has highlighted the needs of family and friends who provide support to mental health service users. Carers of assertive outreach (AO) service users may be particularly in need of support. However, little is known about their experiences and how services can support them. Aim: To explore the experiences of carers of individuals receiving an AO service. Method: Ten participants were interviewed using a semi-structured interview schedule. Interviews were transcribed and analysed using interpretative phenomenological analysis. Results: Participants were positive about the service they and their relatives received from AO teams. They described the service as flexible and responsive to their needs and they had developed close collaborative relationships with AO workers. AO workers were considered by carers to be an extension of their family system. AO interventions helped their relatives to regain independence and enabled participants to feel less burdened by their caring role, thereby improving the carer's quality of life. Conclusions: The unique way in which AO teams engage and work alongside service users and their families is greatly valued by carers.

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Carers at the centre

Most health and social services professionals understand that carers play an important part in the care management of a person with an illness or disability, but there needs to be a greater recognition of the personal needs of carers. Roberta Ford gives a personal insight into the work of carers’ support centres.

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Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies

BACKGROUND: Understanding the health care experience of people with dementia and their caregivers is becoming increasingly important given the growing number of affected individuals. We conducted a systematic review of qualitative studies that examined aspects of the health care experience of people with dementia and their caregivers to better understand ways to improve care for this population.

METHODS: We searched the electronic databases MEDLINE, Embase, PsychINFO and CINAHL to identify relevant articles. We extracted key study characteristics and methods from the included studies. We also extracted direct quotes from the primary studies, along with the interpretations provided by authors of the studies. We used meta-ethnography to synthesize the extracted information into an overall framework. We evaluated the quality of the primary studies using the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.

RESULTS: In total, 46 studies met our inclusion criteria; these involved 1866 people with dementia and their caregivers. We identified 5 major themes: seeking a diagnosis; accessing supports and services; addressing information needs; disease management; and communication and attitudes of health care providers. We conceptualized the health care experience as progressing through phases of seeking understanding and information, identifying the problem, role transitions following diagnosis and living with change.

INTERPRETATION: The health care experience of people with dementia and their caregivers is a complex and dynamic process, which could be improved for many people. Understanding these experiences provides insight into potential gaps in existing health services. Modifying existing services or implementing new models of care to address these gaps may lead to improved outcomes for people with dementia and their caregivers.

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Working but not employed: Mothers of adults with intellectual disability as hidden workers

Background Earlier research shows that nonemployed mothers of children with intellectual disability (ID) have lower wellbeing than employed mothers. This study explored why and to what extent these mothers did not participate in the labour market.

Method An in-depth interview was employed, and 18 working-age and nonemployed mothers in Taiwan who had an adult child with ID were interviewed in their homes between July 2009 and May 2010.

Results The mothers left the labour market at different stages of the family life cycle due to a lack of formal/informal support for the care needs of their young children, and the continuing intensive care needs of their child with ID. Mothers were officially nonemployed; however, to meet their family's financial needs, they were hidden workers in practice.

Conclusions Policies are required that support these hidden female workers, who are also lifelong carers, by offering financial support and affordable social services.

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‘It’s all changed:’ carers’ experiences of caring for adults who have Down’s syndrome and dementia

A qualitative interview study was undertaken to determine the information and support needs of carers of adults who have Down's syndrome and dementia. The data were analysed thematically. Carers' information and support needs were seen to change at pre-diagnosis, diagnosis and post-diagnosis. Helping carers to manage the changing nature of the adult with dementia is seen to be an essential part of the health professional's role.

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Advanced heart failure: impact on older patients and informal carers

Aim.  This paper reports a study exploring the impact of advanced heart failure on the lives of older patients and their informal carers.

Background.  Prognosis is poor in heart failure, with more than a third of patients dying within 12 months of diagnosis, and end-of-life symptoms are distressing and poorly controlled. Although end-of-life care for people with heart failure has received increased attention in recent years, there are still few data on the impact of advanced heart failure on the lives of patients and their informal carers.

Methods.  Focused interviews were conducted with 10 older people with advanced heart failure and their nominated informal carer identified from one district general hospital in the United Kingdom (UK). Joint interviews were conducted with patients and carers in their own home. Thematic analysis was used to identify themes and subthemes.

Findings.  Heart failure affected all aspects of the lives of patients and carers and, in particular, curtailed everyday activities. Patients were very concerned about the ‘burden’ their illness placed on their carer, who in all cases was their partner, although carers did not conceptualize the situation in this way. The socially isolating influence of the condition on both patients and carers was compounded by lack of professional input, and confusion about diagnosis was evident. Concerns about the future were common and, although few participants reported having been explicitly told about their prognosis, many made realistic statements about their limited life expectancy.

Conclusions.  This older cohort of people suffering from heart failure appears to have needs not unlike those of patients with ‘terminal diseases’. When people are diagnosed with more familiar terminal illnesses, in particular cancer, they are given ongoing explanations, reassurance and support. Similar professional input is needed for patients with advanced heart failure and their carers.

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Palliative care: fourth report of session 2003-04; volume 1; report together with formal minutes

Currently, around 56% of people die in hospital, 20% at home, 20% in nursing or residential homes and 4% in hospices. Yet surveys suggest that the majority of people would prefer to be supported to die in their own homes. We note the recent economic analysis which Marie Curie has produced of the potential cost benefits arising from a shift towards more patients dying at home and recommend that the Department assesses this carefully. We welcome the fact that the Government is considering legislation to grant extra rights to carers and recommend that it provides for a period of paid leave for them. We recommend that the Department reviews the place of domestic support within the spectrum of social care services and ensures that people’s needs for domestic help are adequately met. We were concerned to note the variation in the criteria for continuing healthcare between Strategic Health Authorities and recommend that national criteria for continuing care should be developed. Many of our witnesses drew our attention to disputes between health services and those providing personal social care for the terminally ill. Unseemly arguments about who should pay for different elements of a care package are especially abhorrent in palliative care, and we call for an integrated structure in the delivery of care. We also seek the inclusion of hospices or specialist care units in the ambit of the Community Care (Delayed Discharges etc.) Act to ensure that higher priority is not attached to other patients in dealing with delayed discharges. 

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Testing Twigg and Atkin's typology of caring: a study of primary care professionals' perceptions of dementia care using a modified focus group method

The present article explores professional attitudes to family members supporting an older person newly diagnosed with dementia. It draws on professional perspectives derived from a series of 24 multidisciplinary workshops held in the UK, analysed using a typology developed by Twigg in 1989. The primary care workers' understanding of carers' needs and circumstances fitted best with Twigg's models of carers as resources and co-workers, but showed limited awareness of carers' responses and attitudes to caring. It is argued that professional assumptions about family members' roles when dementia is recently recognised among older people expand definitions of carers, but still confirm their instrumental role. 

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Dementia care in the care home

This video focuses on developing dementia care skills. Practical in nature, this title explores the ways in which care workers can adapt everyday routines and practices to support a person with dementia. It aims to: improve understanding of the communication difficulties that can be experienced, whilst also considering how feelings can be expressed through behaviour; develop good verbal and non-verbal communication skills in carers and encourage them to consider the factors that can further improve effectiveness; explore ways in which people with dementia can be engaged in activity to improve their quality of life whilst keeping them safe; encourage the use of person-centred skills to improve the quality of care given.

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It's a different thing

Often the needs of carers of people with dual diagnosis are ignored when they too may be doubly isolated and unsupported. Reports on a pilot two-day training workshop for carers in Camden and Islington Mental Health and Social Care NHS Trust, based on training provided for the trust's community and inpatient mental health staff. Discusses what both staff and carers found useful about the workshops.

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End-of-life issues in acute stroke care: a qualitative study of the experiences and preferences of patients and families

The aims of this qualitative study were to identify patients’ and family members’ experiences of acute stroke and their preferences for end-of-life care. Twenty-eight purposely sampled patients with an acute stroke who had high (n = 13) and low (n = 15) disability were selected from 191 sequential cases admitted to two general hospitals in north-east England. In addition, 25 family members of other stroke patients were recruited. Views about current stroke services and preferences for end-of-life care were elicited in semi-structured interviews. Communication between patients and family members and healthcare professionals was consistently highlighted as central to a positive experience of stroke care. Honesty and clarity of information was required, even where prognoses were bleak or uncertain. Patients and family members appeared to attach as much importance to the style of communication as to the substance of the transfer of information. Where decisions had been made to shift the focus of care from active to more passive support, families, and where possible patients, still wished to be included in ongoing dialogue with professionals. Where patients were thought to be dying, family members were keen to ensure that the death was peaceful and dignified. Families reported few opportunities for engagement in any form of choice over place or style of end-of-life care. No family member reported being offered the possibility of the patient dying at home. Uncertainty about prognosis is inevitable in clinical practice, and this can be difficult for patients and families. Our findings demonstrate the importance of improving communication between patient, family and health professionals for seriously ill patients with stroke in UK hospitals.

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Resource pack designed for young carers

Barnardo’s, the children’s charity, has produced a revised version of its resource pack, Keeping the Family in Mind, after the first 500 packs sold out.

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Informal carers and the primary care team

The number of carers in the community is rising, and the importance of general practice in providing supportfor them has been highlighted. Caring for a disabled friend or relative has been shown to be harmful to the health of the caregiver and changes in social and family structure have led carers to become isolated and more reliant on the formal support services. However, many carersfeel that GPs do not understand their needs, and in turn many GPs and nursesfeel that they lack the relevant resources and training to take a more proactive role. The shift from hospital to community-based care and the blurring of social roles of responsibility puts additional pressure on the carers and community services. However general practice is in the best position to help and there are many things that can be done by primary care teams, such as providing information about available support, benefits and local services, which would be appreciated by informal carers.

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It's time to give young carers what they've been asking for

The number of young carers in the UK is increasing. The official figure is 175,000 but this is likely to be a massive underestimate.

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No effects of a combination of caregivers support group and memory training/music therapy in dementia patients from a memory clinic population

Objectives: To evaluate the impact of a combination of caregiver support group and memory training/music therapy in dementia patients on behavioural and psychological symptoms (BPSD) and caregiver burden compared to a control group.

Method: Eighteen patient-carer-dyads in the treatment group and 18 patient-carer-dyads as controls were studied in the setting of a memory clinic of a psychiatric university hospital over a period of 2 years. Controls were matched for age, gender, diagnosis, dementia severity, living arrangement and medication. The interventions were conducted once per week for 1 hour run by a clinical psychogeriatric team. Outcome measures were patients' cognitive and functional status as well as BPSD and caregivers subjective burden and depression measured by validated scales. Data were obtained 6, 12 and 24 months after baseline.

Results: There were no significant differences between the intervention and control group neither after 6, 12 nor after 24 months treatment.

Conclusions: The lack of a positive impact in alleviating caregiver burden or BPSD after intensive psychological interventions may result from extensive care in the routine clinical management including individual counselling for patients and families. The effect of ‘treatment as usual’ needs to be taken into account when comparing an intervention and control group, as well as the dosage of the intervention. Copyright © 2004 John Wiley & Sons, Ltd.

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Making headway

There are few services provided for people with brain injuries with the result that too much pressure is placed on their carers. Talks to a social worker about the difficulties she had in obtaining support for her client and his carer.

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Rationed care: assessing the support needs of informal carers in English social services authorities

The passing of the Carers (Recognition and Services Act) 1995 was a step forward in trying to ensure that people who provide informal care to disabled, sick or elderly relatives or friends are properly recognised and properly supported. The Carers Act gave informal carers the right to an assessment of their own needs, and this article is based on a study into the impact of the legislation in four local authority social services departments. It is argued that the vision of supporters of the Carers Act, namely to achieve real benefits for many carers, has yet to be realised. The analysis draws on Klein et al.’s (1996) framework of service rationing strategies to demonstrate that decisions about priority setting and different forms of rationing of social care took place at three different levels: national government, local authority and front-line practitioner. Evidence is presented to show that some carers chose to impose rationing on themselves by reducing their demands. The article concludes with comments on the implications of rationing decisions for policy and practice.

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Personalisation for older people: supported housing

Lifelong couple Brian and Olive live in specialist supported accommodation. Brian has been Olive’s carer since she developed dementia. The housing complex where they live is managed as a community in which each individual is valued for the contribution they can make. The manager explains how important it is for carers as well as the person with dementia to maintain their individual identity and role as partner. The value of having a flexible, responsive individual care plan is also emphasised in the film. Richard, whose mother has dementia, explains how important it was for his mum and dad to be able to stay living together, even when his mum’s needs increased. The film concludes by stating that having well trained and selected staff is vital for achieving personalisation.

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Family caregiving and congestive heart failure. Review and analysis

BACKGROUND: There is increasing evidence that discharge planning and post-discharge support for CHF patients can contribute greatly to the medical management of heart failure (CHF) in the community and that the quality of the CHF patient's close personal relationships can influence outcome in CHF. However, there has been little research on the impact of CHF on the family or the role of the family in the management of the condition. In this paper, we provide a review and analysis of studies that have explicitly investigated these issues in the informal carers of CHF patients.

RESULTS OF THE REVIEW: Sixteen papers were identified that examined the role and/or impact of informal caregiving for CHF patients. Our main findings were: demands specific to CHF caregiving were identified, e.g., monitoring complex medical and self-care regimen, disturbed sleep and frequent hospitalisation of patients. Relatively high levels of emotional distress were identified in CHF caregivers. Few studies explicitly investigated the role of informal carers in the management of CHF. Studies were limited in number, scope and quality.

CONCLUSION: Caring for a family member with CHF can affect the well-being of those responsible for care, which may have consequences for the CHF patient's health. Further studies are needed to clarify these issues and to examine the role of informal caregivers in the management of CHF in the community.

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Together for mental health: annual report 2013-14

"Together for mental health" is our ambitious strategy aiming to improve the mental health of the people of Wales and setting out our vision for 21st century mental health services. It is our first mental health strategy to cover all ages and centres on the 6 high level outcomes set out below:

a. The mental health and well-being of the whole population is improved.

b. The impact of mental health problems and/or mental illness on individuals of all ages, their families and carers, communities and the economy more widely, is better recognised and reduced.

c. Inequalities, stigma and discrimination suffered by people experiencing mental health problems and mental illness are reduced.

d. Individuals have a better experience of the support and treatment they receive and have an increased feeling of input and control over related decisions.

e. Access to, and the quality of preventative measures, early intervention and treatment services are improved and more people recover as a result.

f. The values, attitudes and skills of those treating or supporting individuals of all ages with mental health problems or mental illness are improved. 

This is the second annual report on the implementation of the Welsh Government mental health strategy. 

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Enhancing the experience of carers in the chemotherapy outpatient setting: an exploratory randomised controlled trial to test impact, acceptability and feasibility of a complex intervention co-designed by carers and staff

Purpose: Supporting someone through chemotherapy can be emotionally and physically demanding. However, research has yet to establish the type of support carers require or the best way to provide this. This study tested the feasibility and acceptability of a complex intervention for carers that was co-designed by staff and carers of patients starting chemotherapy.

Methods: Forty-seven carers were recruited, randomised between the intervention (n = 24) and control (n = 23) groups. A questionnaire was completed pre- and post-intervention measuring knowledge of chemotherapy and its side effects, experience of care, satisfaction with outpatient services, coping and emotional wellbeing. The intervention process was evaluated by carers and healthcare professionals (HCPs) in focus groups.

Results: Recruitment to the study was unproblematic and attrition from it was low, suggesting the intervention and study processes were acceptable to patients and carers. Carers in receipt of the ‘Take Care’ intervention reported statistically significantly better understanding of symptoms and side effects and their information needs being more frequently met than carers in the control. Confidence in coping improved between baseline and follow-up for the intervention group and declined for the control although differences were insufficient to achieve statistical significance. There was no significant difference between the two groups’ emotional wellbeing. HCP and carer focus groups confirmed the feasibility and acceptability of the intervention.

Conclusions: The ‘Take Care’ intervention proved acceptable to carers and HCPs and demonstrates considerable promise and utility in practice. Study findings support the conduct of a fully powered RCT to determine the intervention’s effectiveness and cost-effectiveness.

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A bulletin on the personal well-being of people who need care and support and carers who need support, 2014-15

This bulletin provides a picture of the wellbeing of people who received care and support, and carers who received support in the last 12 months, and where possible, provides a comparison to the rest of the respondents in the survey (those that had not received any care and support services). Due to the small number of respondents receiving help from care and support services, results are published at a Wales level only. 

Summarises findings from the 2014-15 National Survey for Wales and responses to questions designed to measure the personal well-being of people who need care and support and carers who need support. Respondents were shown a list of services offered by care and support services in Wales and were asked whether they had received any help from these services in the last 12 months. 9 per cent of all respondents had received care and support for themselves) or had received help to care for or arrange care for another person.

Original document (pdf) on Welsh Government website.

Palliative and end of life care toolkit

This toolkit provides links to a range of resources to support GP practices and health professionals in ensuring patients nearing the end of life, and those close to them, receive the highest quality of care and support. It includes tools, guidance, current best practice policy, and legislation for healthcare professionals. It also provides links to training resources to help with continuing professional development and audit tools to evaluate practice. A section providing information for patients, informal carers, and those close to someone nearing the end of life is also included. Developed in partnership with Marie Curie and the Clinical Innovation and Research Centre, the toolkit will be updated on a regular basis.

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Who's there and who cares: age as an indicator of social support networks for caregivers among people living with motor neurone disease

This paper explores the social support networks available to the informal carers of people living with motor neurone disease (MND). An ethnographic case study was undertaken using ecomapping, observation and conversational interviews to collect data from 18 primary carers of people living with MND. Interviews took place in participants’ homes in metropolitan, regional and rural locations. Participants discussed the content of their support network and drew lines between individuals to indicate the type and strength of relationship. Changes to the network were depicted on ecomaps during subsequent interviews. While health policy-makers assume that healthy social capital exists in Australian communities and that social cohesion will ensure active and available support networks in times of illness or disability, data from this exploratory study indicated that this was not consistently the case. Support networks varied in size and composition; however, age was identified as a discriminator of the availability and consistency of support. People in older age groups identified more diverse but consistent support systems while people in younger age groups reported more fluctuations in the strength of relationships and declines in support as caregiving became more demanding. Individual assessment of support networks at regular intervals in the caregiving trajectory is vital for all carers. However carers in younger age groups may need specific support to manage the psychological crises that occur and more access to paid care. Older carers may need consistent support to handle more of the instrumental aspects of care and assistance to mobilise their support networks. Community workers should be alert to the possible need for crisis intervention when tensions in relationships threaten carers’ ability to provide effective care.

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Carer knowledge and perception of healthy lifestyles for adults with intellectual disabilities

Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers' training needs on diet and physical activity. A cross-sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities. An interviewer administered questionnaire was used to examine carer knowledge of public health recommendations on diet and physical activity; perceptions of the benefits of healthy diets and physical activity levels; and the carer views on the barriers to change experienced by individuals with intellectual disabilities. Sixty-three carers took part in the study. They generally had a low level of knowledge around public health recommendations on diet and physical activity. Greater importance was attributed to the health benefits of diet than physical activity. Carers rated intrapersonal barriers to change within the person with intellectual disabilities as more important, than interpersonal or external barriers to change, with significant differences in perceived barriers relevant to diet and physical activity. Carers supporting adults with intellectual disabilities have significant training needs relevant to promoting healthy lifestyles. This highlights the opportunity to promote health improvement via the development, and provision, of effective training initiatives.

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Young caregivers in the end-of-life setting: a population-based profile of an emerging group

Purpose: Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services.

Methods: A population-based analysis of caregivers was performed from piloted questions included in the 2001–2007 face-to-face annual health surveys of 23,706 South Australians on the death of a loved one, caregiving provided, and characteristics of the deceased individual and caregiver. The survey was representative of the population by age, gender, and region of residence.

Findings: Most active care was provided by older, close family members, but large numbers of young people (ages 15–29) also provided assistance to individuals with advanced life-limiting illness. They comprised 14.4% of those undertaking “hands-on” care on a daily or intermittent basis, whom we grouped together as active caregivers. Almost as many young males as females participate in active caregiving (men represent 46%); most provide care while being employed, including 38% who work full-time. Over half of those engaged in hands-on care indicated the experience to be worse or much worse than expected, with young people more frequently reporting dissatisfaction thereof. Young caregivers also exhibited an increased perception of the need for assistance with grief.

Conclusion: Young people can be integral to end-of-life care, and represent a significant cohort of active caregivers with unique needs and experiences. They may have a more negative experience as caregivers, and increased needs for grief counseling services compared to other age cohorts of caregivers.

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Social care: third report of session 2009-10: volume 2: oral and written evidence

The social care system is widely seen as failing and it has long been clear that fundamental and lasting reform is necessary.  Reform is made all the more urgent as an ageing population will mean rising demand for care and support. Projected changes in demographics, availability of support from carers, unit costs of care and other factors indicate that social care in its current form will struggle to meet people's needs. Longer life need not mean more time spent in ill health. Improving public health and developing interventions for long-term conditions could pay major dividends. The old-age "support ratio" (the relative numbers of working-age and older people) is not the most important factor in the likely future affordability of social care. Our society must not underestimate its ability to become more productive and wealthier, nor the contribution that older people will make to that. In this report the Health Committee looks at: the present social care system; meeting future demand and costs; shortcomings of the present social care system;  Plans for reform; Achieving lasting reform; and  The way forward.

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Former palliative caregivers who identify that additional spiritual support would have been helpful in a population survey

Background : Palliative care encompasses physical, psychosocial and spiritual care for patients and caregivers. No population data are available on bereaved people who subsequently report that additional spiritual support would have been helpful.

Methods : In a population survey, a respondent-defined question was asked regarding ‘additional spiritual support’ that would have been helpful if someone ‘close to them had died’ an expected death in the previous five years. Data (socio-demographic [respondent]); clinical [deceased]) directly standardized to the whole population were analysed.

Results : There were 14,902 participants in this study (71.6% participation rate), of whom 31% (4665) experienced such a death and 1084 (23.2%) provided active hands-on (day-to-day or intermittent) care. Fifty-one of the 1084 (4.7%) active caregivers identified that additional spiritual support would have been helpful. The predictors in a regression analysis were: other domains where additional support would have been helpful (OR 1.69; 95% CI 1.46–1.94; p < 0.001); and being female (OR 3.23; 95% CI 1.23 to 8.33; p = 0.017). ‘Additional spiritual support being helpful’ was strongly associated with higher rates where additional support in other domains would also have been helpful in: all bereaved people (2.7 vs 0.6; p < 0.0001); and in active caregivers (3.7 vs 0.8; p < 0.0001).

Conclusion : People who identify that additional spiritual support would have been helpful have specific demographic characteristics. There is also a strong association with the likelihood of identifying that a number of other additional supports would have been helpful. Clinically, the need for additional spiritual support should open a conversation about other areas where the need for further support may be identified.

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Prioritising need in the context of Putting people first: a whole system approach to eligibility for social care: guidance on eligibility criteria for adult social care, England 2010

The aim of this revised guidance is to assist councils with adult social services responsibilities to determine eligibility for adult social care, in a way that is fair, transparent and consistent, accounting for the needs of their local community as a whole as well as individuals’ need for support. It replaces Fair Access to Care Services: guidance on eligibility criteria for adult social care which was issued in 2003, and has been written in the light of recommendations made in the Commission for Social Care Inspection’s review Cutting the Cake Fairly. This revised guidance aims to set social care eligibility criteria within the context of both the new direction of policy established by Putting People First, and more generally within a broader theme of public service reform. Priorities for this reform include greater choice and control, better access to public services and information, empowerment of people using services and their carers at local level and the definition of user satisfaction as a key measure of success.

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Care Act 2014: chapter 23

The Care Act aims to make the care and support system clearer and fairer for those who need it. It includes provision for a national minimum eligibility threshold, gives carers a legal right to assessment, and reforms the way that care is paid for. The Act also makes provision about care standards, establishes and make provision about Health Education England, to establish and makes provision about the Health Research Authority. The Act was passed on 14 May 2014 and comes into force in April 2015.

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Care-giver network transformations: the need for an integrated perspective

This paper reviews recent research on care-giver networks and the concepts and approach that they apply, with particular reference to the support networks of the primary care-givers of older people with Alzheimer's disease. It makes the case for an integrated approach to the explanation of the various combinations of formal and informal support that are found. It argues that more attention needs to be given to transformations in care-giver networks over time, and that this will require more development of both theoretical perspectives and analytical tools. The stages of a care-giver's commitment towards an elderly relative are examined, to understand the associations between changes in the ailing person's needs, the structure of the support network and the primary care-giver's roles. This approach makes useful contributions to the understanding of the development, maintenance and dissolution of supportive ties. Following the work of Pescosolido (1991), we propose an integrated perspective that combines the ‘care-giver career’ approach and the methods of ‘social network’ analysis.

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Experiences with using information and communication technology to build a multi-municipal support network for informal carers

This multi-municipal intervention study explored whether informal carers of frail older people and disabled children living at home made use of information and communication technology (ICT) to gain knowledge about caring and to form informal support networks, thereby improving their health. Seventy-nine informal carers accessed web-based information about caring and an e-based discussion forum via their personal computers. They were able to maintain contact with each other using a web camera and via normal group meetings. After the first 12 months, 17 informal carers participated in focus group interviews and completed a short questionnaire. Four staff members were also interviewed. Participant carers who had prior experiences with a similar ICT-based support network reported greater satisfaction and more extensive use of the network than did participants with no such prior experience. It seems that infrequent usage of the service may be explained by too few other carers to identify with and inappropriate recruitment procedures. Nevertheless, carers of disabled children reported that the intervention had resulted in improved services across the participant municipalities. To achieve optimal effects of an ICT-based support network due attention must be given to recruitment processes and social environment building for which care practitioners require training and support.

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Good practice carers and young carers stories: caring together and getting it right for young carers: the carers and young carers strategy for Scotland 2010-2015

This compendium of good practice and carers and young carers stories accompanies Caring Together and Getting it Right for Young Carers. Earlier in the year the Scottish Government invited local authorities, Health Boards, the Third Sector and other organisations in Scotland to submit examples of good practice about support for carers and young carers. They also invited personal ‘stories’ from carers and young carers. Many examples and stories were received and these form the subject of this compendium produced by the Scottish Government and the Convention of Scottish Local Authorities (COSLA). The compendium contains 45 examples of good practice and 24 carers’ and young carers’ stories. Available online only.

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Factors affecting the decision to place a relative with dementia into residential care

AIM: To find out the reasons why carers might decide that they could not continue caring for a relative with dementia at home. METHOD: Semi-structured interviews with carers of relatives who have dementia, before placing their relatives into residential care and then again four months after that placement. N=4. RESULTS: Wandering, aggression, incontinence and physical dependency in people who have dementia are factors that might lead carers to consider placing their relatives into residential care; stress associated with Christmas can be another influencing factor. CONCLUSION: Carers looking after a relative who has dementia would benefit if the relative was provided with increased day care and home respite sitting services; services should be increased at Christmas; and support staff should be knowledgeable about the specific needs of people who have dementia and their carers. 

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National user and carer outcomes and local improvement targets for the joint future agenda

The Health and Community Care Ministerial Steering Group (MSG) of Scotland is leading the drive to “re-invigorate the Joint Future Agenda”, in order to improve outcomes for individuals and their carers. As part of this drive, it has decided that local partnerships should be asked to agree local improvement targets which could demonstrate improved outcomes, as a result of better joint working. It is likely that these local improvement targets will build on existing local performance frameworks which partnerships are already developing, eg. on delayed discharges, quicker assessments, and easier access to services. The MSG proposes that local improvement targets would be reported to the Joint Future Implementation and Advisory Group. It would have the responsibility for scrutinising them and then taking appropriate action, for example, to support local partnerships.

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Which outcomes should we measure in adult epilepsy trials? The views of people with epilepsy and informal carers

Objective: So that informed treatment decisions can be made, clinical trials need to evaluate treatments against domains that are important to people with epilepsy (PWE), their carers, and clinicians. Health professionals have identified domains of importance to them via the International League Against Epilepsy's Commission on Outcome Measurement (COME). However, patients and carers have not been systematically asked.

Methods: Via the membership of the British Epilepsy Association, we recruited and surveyed 352 PWE and 263 of their informal carers. They were presented with 10 outcome domains (including the 5 identified by COME) and asked to rate their importance using a 9-point Likert scale. They were also asked to identify any additional domains of importance.

Results: The patients' mean age was 49 years, the median number of years since diagnosis was 20, and 65% had experienced seizures in the prior 12 months. Most carers were the spouse or parent. Patients' and carers' mean ratings indicated that their outcome priorities were similar, as were those of patients who had and had not experienced recent seizures. There was consensus among patients that 6 domains were of critical importance. These included the 5 identified by COME (namely, and in order of importance, the effects of the treatment on “Seizure severity”, “Seizure frequency”, “Quality of life”, “Cognitive function”, and “Adverse events”), as well as one additional domain (“Independence/need for support”). There was consensus among carers that the 5 COME domains were also critically important. They, however, identified 3 further domains as critically important. These were the effects of the treatment on patient “Depression”, “Anxiety”, and “Independence/need for support”.

Conclusions: Our study found some overlap between the priorities of PWE, carers, and health professionals. They, however, highlight additional areas of importance to patients and carers. Our results could inform a core outcome set for epilepsy that represents the domains that should be reported as a minimum by all trials. This could promote trials which produce meaningful results and consistency in measurement and reporting.

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8 out of 10 carers at breaking point

During National Learning Disability Week, Mencap launched its Breaking Point campaign to get more short breaks for family carers. Mencap's survey showed that 6 out of 10 carers of people with severe or profound learning disabilities surveyed by Mencap were getting no short break service. Many local authorities do not see these families as a priority. Mencap wants spending in this area to be closely checked. As part of a campaign, people emailed their MP. So far, more than 1,000 people have emailed their MP. [Journal abstract]

Case-finding of dementia in general practice and effects of subsequent collaborative care; design of a cluster RCT

Background: In the primary care setting, dementia is often diagnosed relatively late in the disease process. Case finding and proactive collaborative care may have beneficial effects on both patient and informal caregiver by clarifying the cause of cognitive decline and changed behaviour and by enabling support, care planning and access to services. We aim to improve the recognition and diagnosis of individuals with dementia in general practice. In addition to this diagnostic aim, the effects of case finding and subsequent care on the mental health of individuals with dementia and the mental health of their informal carers are explored.

Methods and design: Design: cluster randomised controlled trial with process evaluation.

Participants: 162 individuals ≥ 65 years, in 15 primary care practices, in whom GPs suspect cognitive impairment, but without a dementia diagnosis.

Intervention; case finding and collaborative care: 2 trained practice nurses (PNs) invite all patients with suspected cognitive impairment for a brief functional and cognitive screening. If the cognitive tests are supportive of cognitive impairment, individuals are referred to their GP for further evaluation. If dementia is diagnosed, a comprehensive geriatric assessment takes place to identify other relevant geriatric problems that need to be addressed. Furthermore, the team of GP and PN provide information and support.

Control: GPs provide care and diagnosis as usual.

Main study parameters: after 12 months both groups are compared on: 1) incident dementia (and MCI) diagnoses and 2) patient and caregiver quality of life (QoL-AD; EQ5D) and mental health (MH5; GHQ 12) and caregiver competence to care (SSCQ). The process evaluation concerns facilitating and impeding factors to the implementation of this intervention. These factors are assessed on the care provider level, the care recipient level and on the organisational level.

Discussion: This study will provide insight into the diagnostic yield and the clinical effects of case finding and collaborative care for individuals with suspected cognitive impairment, compared to usual care. A process evaluation will give insight into the feasibility of this intervention. The first results are expected in the course of 2013.

Trial registration: NTR3389

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Help at home worth £6 billion

New bill to improve support for UK informal carers. The proposed Carers (Identification and Support) Bill is summarised and responses from charities and other organisations are discussed. [BNI unique abstract]

Well-being among employed and non-employed caregiving women in Taiwan

This study addressed various groups of non-employed/employed and non-caring/caring women in Taiwan. Data from the 2006 National Taiwanese Women Survey (at age 16–64, n= 6,017) were analysed to determine whether there are differences in terms of well-being, as measured by self-rated health and family life satisfaction, between women who work and/or care and between different carer groups. Other factors associated with well-being of carers of young children (n= 1,697) were also analysed. The results showed that non-employed carers of disabled adults stood out as the most disadvantaged group. However, the importance of work has been replaced by support among carers of young children. This study suggests that unpaid carers, particularly carers of disabled adults who are non-employed, ought to be supported by policies. To improve carers' well-being, care–work reconciliation among working-age women needs to be included in the future care scheme in Taiwan.

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Committed to carers: supporting carers of people at the end of life

Marie Curie campaigns to ensure that more people are able to be cared for and die at home. Previous research has shown that 63% of people would choose to die at home if they were terminally ill, however the reality in the UK is that just 21% of people die at home, while the majority (53%) die in hospital. This report describes the direct experiences of carers looking after someone at the end of life. It is based on interviews with 40 carers who were currently caring for a sick friend or relative or had been bereaved. The research was designed to explore how people experience caring for someone with a terminal illness in the context of their family, work and social lives. Some of the patients used hospice or hospital in-patient care, others remained at home. The separate chapters consider: the impact of caring for someone at the end of life; access to information and support; the place of care and place of death; and bereavement. It concludes with recommendations designed to ensure that more carers of someone at the end of life receive the support they need to keep caring.

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The Liverpool Care Pathway for cancer patients dying in hospital medical wards: A before-after cluster phase II trial of outcomes reported by family members

Background: Hospital is the most common place of cancer death but concerns regarding the quality of end-of-life care remain.

Aim: Preliminary assessment of the effectiveness of the Liverpool Care Pathway on the quality of end-of-life care provided to adult cancer patients during their last week of life in hospital.

Design: Uncontrolled before–after intervention cluster trial.

Settings/participants: The trial was performed within four hospital wards participating in the pilot implementation of the Italian version of the Liverpool Care Pathway programme. All cancer patients who died in the hospital wards 2–4 months before and after the implementation of the Italian version of Liverpool Care Pathway were identified. A total of 2 months after the patient’s death, bereaved family members were interviewed using the Toolkit After-Death Family Interview (seven 0–100 scales assessing the quality of end-of-life care) and the Italian version of the Views of Informal Carers - Evaluation of Services (VOICES) (three items assessing pain, breathlessness and nausea-vomiting).

Results: An interview was obtained for 79 family members, 46 (73.0%) before and 33 (68.8%) after implementation of the Italian version of Liverpool Care Pathway. Following Italian version of Liverpool Care Pathway implementation, there was a significant improvement in the mean scores of four Toolkit scales: respect, kindness and dignity (+16.8; 95% confidence interval = 3.6–30.0; p = 0.015); family emotional support (+20.9; 95% confidence interval = 9.6–32.3; p < 0.001); family self-efficacy (+14.3; 95% confidence interval = 0.3–28.2; p = 0.049) and coordination of care (+14.3; 95% confidence interval = 4.2–24.3; p = 0.007). No significant improvement in symptom’ control was observed.

Conclusions: These results provide the first robust data collected from family members of a preliminary clinically significant improvement, in some aspects, of quality of care after the implementation of the Italian version of Liverpool Care Pathway programme. The poor effect for symptom control suggests areas for further innovation and development.

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Association between cultural factors and the caregiving burden for Chinese spousal caregivers of frail elderly in Hong Kong

Objectives: The aim of this study was to explore the relationship between cultural factors and the caregiving burden of Chinese spousal caregivers who provided care to their frail partners.

Method: A sample consisting of 102 Chinese caregivers for frail elderly spouses was recruited from home care services across various districts in Hong Kong. Structured interviews were conducted with the participants in their homes, measuring demographics, the functional status of the spouse, the degree of assistance required in daily care, perceived health, the caregiver's orientation to traditional Chinese family values, social support, coping, and caregiver burden.

Results: Findings of regression analysis indicated that gender, activities of daily living (ADL) status, orientation to traditional Chinese family values, passive coping, and marital satisfaction associated with caregiver burden. Being female, having lower functioning in ADL or a strong orientation toward traditional Chinese family values, employing the strategies of passive coping more frequent, or experiencing a low degree of marital satisfaction were associated with high levels of caregiver burden.

Conclusion: These findings provided a basis for developing appropriate interventions to minimize the caregiver burden of spousal family caregivers.

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Young carers' draft regulations: Government consultation

This consultation seeks the views of interested parties on the draft Young Carers' (Needs Assessments) (England) Regulations to put into effect Section of the Children and Families Act 2014. A local authority must assess whether a young carer within their area has needs for support and, if so, what those needs are, if - (a) it appears to the authority that the young carer may have needs for support, or; (b) the authority receives a request from the young carer or a parent of the young carer to assess the young carer's needs for support. The draft regulations set out: the matters to which a local authority must have regard in carrying out a young carer's needs assessment; the manner and form of a young carer's needs assessment; the matters which a local authority must take into account when carrying out a young carer's needs assessment; and, the definition of the term 'whole family approach'. The consultation closes on 26 January 2015.

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Suicidal ideation in family carers of people with dementia: a pilot study

Objective: Two small studies have suggested that family carers of people with dementia may be a high-risk group for suicide. The objective of this study was to further explore the rate of suicidal ideation in a large sample of carers and identify psychosocial risk and protective factors.

Method: A cross-sectional survey was conducted with 566 family carers. The survey included measures of suicidality, self-efficacy, physical health, depression, anxiety, hopelessness, optimism, burden, coping strategies, and social support.

Results: Sixteen percent of carers had contemplated suicide more than once in the previous year. There were univariate differences between suicidal and non-suicidal carers on self-efficacy, social support, coping, burden, depression, anxiety, hopelessness, optimism, reasons for living, and symptoms of dementia, as well as age and income management. In a multivariate model, age, depression, and reasons for living predicted suicidal ideation. In tests for mediation, satisfaction with social support and dysfunctional coping had indirect effects on suicidal ideation via depression.

Conclusion: Family carers of people with dementia have high rates of suicidal ideation, with depression a risk factor and increasing age and reasons for living as protective factors. Depression and reasons for living should be targeted in interventions to reduce suicide risk in dementia carers.

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Perceptions of psychosis, coping, appraisals, and psychological distress in the relatives of patients with schizophrenia: an exploration using self-regulation theory

OBJECTIVE: Following Leventhal's self-regulation model, the purpose of the present study was to provide an examination of the relationship between psychosis perceptions, coping strategies, appraisals, and distress in the relatives of patients with schizophrenia.

DESIGN: Cross-sectional study. METHOD: Participants were 42 relatives of patients with schizophrenia who completed the Hospital Anxiety and Depression Scale (HADS), a brief coping strategies measure (COPE), the Revised Illness Perception Questionnaire (IPQR), and a measure of primary and secondary appraisals (Family Questionnaire).

RESULTS: In general, carers who viewed their relative's psychosis as chronic, who had a stronger illness identity (experience of symptoms), who held a stronger belief in the severity of its consequences, and who reported weaker beliefs in treatment control but stronger beliefs that their relative could exert control over their condition had higher distress scores. Coping through seeking emotional support, the use of religion/spirituality, active coping, acceptance, and positive reframing were associated with less distress, while coping through self-blame was associated with higher distress scores. Hierarchical regression demonstrated that illness perceptions and coping (acceptance, positive reframing, and self-blame), respectively, made significant additional contributions to the variance in distress when entered after demographics, and primary and secondary appraisals. Furthermore, a mediational analysis suggested that coping strategies characterized by greater positive reframing, less self-blame, and greater acceptance mediated the relationship between distress, and both illness identity and carer's beliefs about how much personal control the patient could exercise over their condition. There was no mediational effect of coping on the relationship between distress and carers' perceptions about symptom control through medical treatment.

CONCLUSION: Results provide partial but not unequivocal support for the self-regulation model in the current sample. Findings may invite us to consider the further use of the self-regulation/common sense model as a framework for understanding distress in the carers of people with a diagnosis of schizophrenia.

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The amount of informal and formal care among non-demented and demented elderly persons - Results from a Swedish population-based study

Background: Developed countries are experiencing a dramatic increase in the proportion of elderly persons, as well as a progressive aging of the elderly population itself. Knowledge regarding the amount of formal and informal care and its interaction at population-based level is limited.

Objectives: To describe the amount of formal and informal care for non-demented and demented persons living at home in a population-based sample.

Methods: The population consisted of all inhabitants, 75 + years, living in a rural community (n = 740). They were clinically examined by physicians and interviewed by nurses. Dementia severity was measured according to Washington University Clinical Dementia Rating Scale (CDR). Informal and formal care was examined with the RUD (Resource Utilization in Dementia) instrument.

Results: The amount of informal care was much greater than formal care and also greater among demented than non-demented. There was a relationship between the severity of the congnitive decline and the amount of informal care while this pattern was weaker regarding formal care. Tobit regression analyses showed a clear association between the number of hours of informal and formal care and cognitive decline although this pattern was much stronger for informal than formal care.

Conclusions: Informal care substitutes rather than compliments formal care and highlights the importance of future studies in order to truly estimate the amount of informal and formal care and the interaction between them. This knowledge will be of importance when planning the use of limited resources, and when supporting informal carers in their effort to care for their intimates. Copyright © 2005 John Wiley & Sons, Ltd.

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Half a million voices: improving support for BAME carers

There are 500,000 Black Asian Minority Ethnic (BAME) carers in England. This report shows that BAME carers provide more care than average. They face additional difficulties as they care, struggling with language barriers, accessing culturally appropriate services and with stereotyping around caring. This puts them at greater risk of ill health, poverty, loss of employment and social exclusion. The report analyses existing provisions and sets clear recommendations for local authorities, health and well being boards, primary care trusts and GP consortia to improve services.

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Carers' quality of life and experiences of adult social care support in England

Informal carers make a vital contribution to the well-being of the people they care for or look after. Against the policy background in England, the purpose of this study was to explore the views of carers who are in contact with adult social care support services. A qualitative study with 31 carers, who were recruited via local authorities and carers' organisations, was conducted between April and July 2012 to collect data on carers' experiences and perceptions of their quality of life (QoL) with and without adult social care and support for themselves or the person they look after. Through framework analysis, three key themes were identified: (i) definitions of social care services ‘for’ the carer or ‘for’ care recipient and social care outcomes; (ii) carers' access to social care services; and (iii) the meaning and value of informal care. We find that carers' QoL is affected by social care support directed at carers and support directed at those they care for, as well as access to services, the experience of stigma in communities, and in how individual needs and preferences are considered when making decisions about care. While there is much to welcome in the direction of policy in England, this study has shown that there are some gaps in thinking around these areas that will need to be addressed if the lives of carers are to be improved.

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Participation: (re)interpretation of a core value in the Czech social care of the frail elderly

A variety of non-fiscal input could be brought into discussion regarding the redesign and/or reform of the social care system for the frail elderly in the Czech Republic. It should be based on a deeper understanding of different stakeholders' interpretations of "Participation" one of the core values of the European social model. The study was based on secondary data collected through semi-structured interviews with "informal carers" (family members, non-professionals), secondary data collected through international focus-groups; participants were recruited from master-degree students of "social and health care management" using qualitative content analysis and data collected through document content analysis. With an aging European population, the intergenerational participation appears disputable (not axiomatic) with two generations of frail seniors in one family. Redesigned and/or new kinds of "prevention" services should be in place, possibly refocusing its effort to different target groups to support the perspective of “qualified customer behaviour”. It offers possible direction of further research.

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The experience of carers in supporting people with intellectual disabilities through the process of bereavement: an interpretative phenomenological analysis

Background: This study explored the personal experiences of family carers and residential care staff in supporting adults with intellectual disabilities through the process of bereavement.

Method: A semi-structured interview was used to interview 11 carers on their experience of supporting adults with intellectual disabilities through the process of bereavement. The transcripts were analysed using interpretative phenomenological analysis (IPA).

Results: A total of five superordinate themes were identified: (i) Factors making the experience difficult for carers, (ii) Factors that helped carers, (iii) Carers' perspectives on the responses of people with intellectual disabilities, (iv) Approaches to supporting people with intellectual disabilities and (v) Carers' perspectives on support.

Conclusions: Supporting people with intellectual disabilities through bereavement is an emotionally demanding task for carers. The support needs of carers need to be acknowledged and addressed in order to ensure that adequate support is available to people with intellectual disabilities following bereavement.

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Home support workers perceptions of family members of their older clients : a qualitative study

Background: Health care discourse is replete with references to building partnerships between formal and informal care systems of support, particularly in community and home based health care. Little work has been done to examine the relationship between home health care workers and family caregivers of older clients. The purpose of this study is to examine home support workers’ (HSWs) perceptions of their interactions with their clients’ family members. The goal of this research is to improve client care and better connect formal and informal care systems.

Methods: A qualitative study, using in-depth interviews was conducted with 118 home support workers in British Columbia, Canada. Framework analysis was used and a number of strategies were employed to ensure rigor including: memo writing and analysis meetings. Interviews were transcribed verbatim and sent to a professional transcription agency. Nvivo 10 software was used to manage the data.

Results: Interactions between HSWs and family members are characterized in terms both of complementary labour (family members providing informational and instrumental support to HSWs), and disrupted labour (family members creating emotion work and additional instrumental work for HSWs). Two factors, the care plan and empathic awareness, further impact the relationship between HSWs and family caregivers.

Conclusions: HSWs and family members work to support one another instrumentally and emotionally through interdependent interactions and empathic awareness. Organizational Care Plans that are too rigid or limited in their scope are key factors constraining interactions.

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Services to support carers of people with mental health problems : consultation report for the National Co-ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO)

The aim of this report is to provide a scoping review of evaluation studies of interventions and serv ices to support carers of people with m ental health problem s, to discuss issues relating to the effectiveness and cost - effectiveness of interventions, and to provide insights into areas where there are gaps in knowledge. The report is accom panied by a second report, the Consultation Report, that docum ents a consultation exercise held with key stakeholders, including ‘key informant’ carers. A third report, the Overview Report, draws together the em erging them es and issues, and advises on what further researc h and development work should be funded in this area. 

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Working with family carers of people with dementia: 'negotiated' coping as an essential outcome

Supporting family carers is likely to remain at the forefront of community care policy in dementia care for the foreseeable future. However, despite extensive research in the area there is little evidence for the effectiveness of current interventions. Using data from an Australian study of how carers of people with dementia cope with the challenges they face, this article calls for a re-appraisal of the ways in which a successful intervention is defined and promotes an approach based on partnership in which carers themselves play a significant role in determining 'what works'.

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Young carers in Germany: to live on as normal as possible - a grounded theory study

Background: In contrast to a growing body of research on the situation of adult family care givers, in Germany hardly anything is known about the situation of children and teenagers who are involved in the care of their relatives.

Methods: In this Grounded Theory study 81 semi structured interviews have been carried out with children and their parents in 34 families, in which one member is chronically ill. 41 children and 41 parents participated and the sample is heterogeneous and diverse.

Results: On the one hand, there is the phenomenon 'keeping the family together", which describes how families themselves cope with the chronic illness and also, which tasks to what extent are being shifted and redistributed within the family in order to manage daily life. Influencing factors, the children's motives as well as the impact on the children also belong to this phenomenon. The second phenomenon 'to live a normal course of life' describes concrete wishes and expectations of support for the family to manage the hindered daily life. These two phenomena linked together constitute the 'model of experience and construction of familial care, in which children take over an active role'.

Conclusion: It will be discussed, that the more families are in dire need of support, the more their distress becomes invisible, furthermore, that management of chronic illness is a process, in which the entire family is involved, and thus needs to be considered, and finally, that young carer's relief is not possible without relief of their parents.

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Respite care as a community care service: factors associated with the effects on family carers of adults with intellectual disability in Taiwan

Background This study examines the effects and associated factors of respite care, which was legislated as a community service for adults with an intellectual disability (ID) in Taiwan in 1997.

Method A total of 116 family carers who live with an adult with ID and have utilised the respite care program were surveyed using standardised measures.

Results The results suggest that the most notable effects of respite care include improvement in the carers' social support and life satisfaction, and relief of psychological stress and overall burden of care. The factors associated with these effects include the way the participants have used the respite care and the users' individual characteristics.

Conclusions How families used the respite care, whether the carers practised a religion, and where the families resided, were the most significant factors in determining the effectiveness of the respite. Suggestions are made for making access to information about the program more widely available, and for extending the availability and duration of the service.

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The £20 billion question: an inquiry into improving lives through cost-effective dementia services

The facts about the growing number of people with dementia in the UK and the associated costs are firmly established. It is well known that dementia is a significant and growing driver of demand for health and social care. The cost of dementia in the UK in 2010 was estimated to be £20 billion and this is expected to grow to over £27 billion by 2018. It is also clear that health and social care budgets are under extreme pressure and there is an urgent need to improve the cost-effectiveness of services. Given the high financial costs of dementia and the human cost of failing to provide good quality support, commissioners and planners will miss a vital opportunity if they do not treat dementia as a priority area for improving cost-effectiveness. The APPG believes there is ample opportunity for using resources more effectively while at the same time improving outcomes for people with dementia. The evidence in this report demonstrates that many areas have been able to not only achieve better outcomes for people with dementia but also to achieve greater value for money in dementia care, by making changes to service provision or adopting new ways of working. Many of the examples focus on earlier intervention to prevent crises or delay the need for more intensive types of support. Witnesses were also clear that integrated models of care are necessary. Professionals from across health and social care need to work closely and co-ordinate services to improve the efficiency and quality of dementia services. These findings should be incorporated within the current health and social care reforms, for example, by ensuring resources are focused on prevention and that commissioning is informed by a wide range of views. The APPG on Dementia considers that there is considerable potential to increase the cost-effectiveness of dementia services, while at the same time improving outcomes for people with dementia. We urge health and social care planners and providers to consider what they can do differently to achieve these ends. Given the considerable burden of dementia, improving the cost-effectiveness of dementia care could make a significant impact on the overall health and social care budget.

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Caregiver roles in families affected by Huntington's disease: a qualitative interview study

Aim: The objective of this study was to explore family caregivers' experiences with the impact of Huntington's disease (HD) on the family structure and roles in the family.

Methodology: We interviewed 15 family caregivers in families affected by HD, based on a semi-structured interview guide. The participants were recruited through hospital departments and a lay organisation for HD in Norway. Data from the interviews were analysed with systematic text condensation.

Results: Huntington's disease could have a substantial impact on the family system, the shape of roles among family members and the hierarchical order between spouses, partners, and parents and children. The relationship between spouses and partners changed during the course of the disease. A reciprocal relationship was difficult to maintain, as the role as carer overshadowed other roles. Children of an affected parent could compensate for impairments by taking on adult responsibilities, and in some families, a child had the role as main caregiver. The increasing need for care could cause conflicts between the role as family member and family caregiver. The burden of care within the family could fragment and isolate the family.

Conclusions: Huntington's disease has a major impact on family systems. Caregiver roles are shaped by impairments in the affected family member and corresponding dynamic adoption and change in roles within the family. Making assessments of the family structure and roles, professionals may understand more about how to care for and support individuals in their role as family members and caregivers in different stages of the disease and family life cycle.

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The recognition of and response to dementia in the community: lessons for professional development

Adult learning approaches require professionals to identify their learning needs. Learning about dementia syndromes is a complex task because of the insidious onset and variable course of the disease processes, the inexorability of cognitive and functional loss, and the emotional impact of neurodegenerative disorders on those experiencing them and on their family and professional carers. This report describes the ways in which learning tasks were understood and articulated by 774 community-based professionals from different disciplines, working in nominal groups in 24 settings across the United Kingdom, and explores how these groups set about identifying their learning needs. These groups focused on being insufficiently skilled to carry out educational functions, on solving problems of limited resources and inflexible systems, and on carers rather than on people with dementia. The groups’ solution hinged on multidisciplinary learning being the best route to achieving system change, but such an approach to learning was dealt with uncritically. Three themes received scant attention: the impact of practitioners’ own emotional responses to dementia on their clinical or practical skills; the educational potential of voluntary organizations; and the value of learning from the person with dementia, as much as from their carers. Professional development should therefore widen the debate about recognition of dementia to improvement of timely responses. It should concentrate on developing capacities not only around diagnosis, but also around communication and support.

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Trends in health outcomes for family caregivers of hip-fractured elders during the first 12 months after discharge

Aim.  This article reports on trends in health outcomes for family caregivers of hip-fractured patients and the effects of social support on these outcomes.

Background.  Little is known about the impact of caregiving on the health outcomes of family caregivers of patients with hip fracture.

Method.  For this prospective, correlational study, data were collected from 135 family caregivers of hip-fractured elders (2001–2005). Data on health-related quality of life and social support were collected from family caregivers at 1, 3, 6 and 12 months after discharge of the older hip-fractured patient.

Findings.  During the 12 months after the patients’ discharge, family caregivers’ scores improved significantly in role performance-related scales, including bodily pain, social function, role limitations due to emotional problems and role limitations due to physical problems. However, caregivers’ scores for general health and mental health were significantly lower at 12 months [59·91 (sd = 24·54) and 65·91 (sd = 14·36) respectively] than at 1 month after discharge [64·35 (sd = 23·29) and 67·94 (sd = 18·47) respectively]. The trends for most subscale scores for health-related quality of life were positively related to perceived availability of social support.

Conclusions.  Caring for a hip-fractured older family member over a sustained period may enhance family caregivers’ role performance, but have a negative impact on their perceived general health and mental health. These results suggest that home care nurses should develop interventions early after discharge to assess and improve family caregivers’ health perception, mental health and social support.

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Refreshed autistic spectrum disorder strategic action plan

This new Strategic Action Plan has been developed in response to what people with autism, their families and carers have said is important to them. We have also worked with a wide range of stakeholders to identify some key priority themes and actions that will make a real difference to the lives of children and adults with autism. The Plan sets out what we have done, what we were told and what we will do. It has three key priority areas:  Awareness raising, information and training;  Assessment and diagnosis; and  Meeting support needs. 

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Joint declaration on post-diagnostic dementia care and support

A shared approach to improving the care and support for people with dementia, their families and carers receive following a diagnosis. The declaration sets out: a shared commitment to joint action across government, health, social care, the third sector and all other relevant partners; the ambition to deliver better quality post-diagnostic care; and the need to deliver integrated and effective services that meet the needs of people with dementia and their families and carers.

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Adults with Incapacity (Scotland) Act 2000: code of practice for continuing and welfare attorneys

The Adults with Incapacity (Scotland) Act 2000 was introduced to protect individuals with incapacity and to support their families and carers in managing and safeguarding the individuals’ welfare and finances. The Executive commissioned a two-year project to monitor how the Act was working. The results were positive, but showed that some changes could be made to streamline procedures and enable more adults and their carers to benefit from the Act. This revised edition of the code of practice for continuing and welfare attorneys takes account of changes to the Act that were introduced in part 2 of the Adult Support and Protection (Scotland) Act 2007. This code is for anyone appointed as an attorney under the Act, that is, as continuing and/or welfare power of attorney. The code applies equally to a lay person and to a professional continuing attorney such as a solicitor or accountant. It contains the following sections: about the act; creating a power of attorney; exercising powers of attorney (continuing and welfare); Specific guidance on exercising welfare powers of attorney;Stopping being an attorney; and Pre-act attorneys and attorneys under the law of another country.

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It's time to accept help

A panel of practitioners give their opinions on the case of a young disabled women who is being looked after at home by her elderly parents. The case highlights the importance of providing support to carers.

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Hidden caring, hidden carers? Exploring the experience of carers for people with long-term conditions

Informal carers make a significant contribution to illness management in communities, but many struggle to access support and remain ‘hidden carers’. We aimed to explore how carers of people with common long‐term conditions (LTCs, such as coronary heart disease or kidney disease) conceptualised their caring, and whether they struggled to identify themselves with the term ‘carer’ or access for support. We conducted semi‐structured interviews with 19 informal carers of people with LTCs recruited from local support groups. Topic guides were designed to encourage participants to provide their retrospective accounts of identifying as a carer or struggling to do so. Data were analysed using the constant comparative method. The study was designed collaboratively with a patient and public involvement (PPI) partner, and we consulted with a PPI steering group of people with lived experience of caring during the study. Results showed how participants drew on comparisons with those caring for more dependent relatives in explaining their reluctance to define themselves as a carer, and resisted adopting the label due to concerns that it would threaten the identity of the cared‐for person. The data were interpreted in terms of types of ‘work’ undertaken to manage LTCs, and revealed that carers of patients with LTCs appear to primarily engage in biographical and emotional support, which may be more difficult to conceptualise as legitimate caring ‘work’. Participants indicated that health professionals may be in a unique position to validate their role as carers and encourage support seeking. The study suggests how the greater focus on self‐management of LTCs in the community must be complemented by recognition of this group as potentially ‘hidden carers’, who support the patient to minimise the impact the illness has on their lives and consequently may minimise their own caring role, with negative implications for support seeking.

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Best practice for providing social care and support to people living with concurrent sight loss and dementia: Professional perspectives

Purpose – Approximately 100,000 people in the UK aged 75 and over have concurrent dementia and sight loss, but current understanding of their experiences, needs and preferences is limited. The purpose of this paper is to report on a research project that explored the provision of social care and support for older people with both conditions.

Design/methodology/approach – The project was a collaboration between the universities of York, Worcester, Bournemouth and Cambridge, supported by the Thomas Pocklington Trust and the Housing and Dementia Research Consortium. Data for this paper were drawn from focus groups held in 2013 involving 47 professionals across the dementia, sight loss and housing sectors.

Findings – Thematic analysis identified five main barriers to providing high-quality, cost-effective social care and support: time constraints; financial limitations; insufficient professional knowledge; a lack of joint working; and inconsistency of services. The requirements of dementia and sight loss often conflict, which can limit the usefulness of equipment, aids and adaptations. Support and information needs to address individual needs and preferences.

Research limitations/implications – Unless professionals consider dementia and sight loss together, they are unlikely to think about the impact of both conditions and the potential of their own services to provide effective support for individuals and their informal carers. Failing to consider both conditions together can also limit the availability and accessibility of social care and support services. This paper is based on input from a small sample of self-selecting professionals across three geographical regions of England. More research is needed in this area.

Practical implications – There are growing numbers of people living with concurrent dementia and sight loss, many of whom wish to remain living in their own homes. There is limited awareness of the experiences and needs of this group and limited provision of appropriate services aids/adaptations. A range of measures should be implemented in order to support independence and well-being for people living with both conditions and their family carers. These include increased awareness, improved assessment, more training and greater joint working.

Social implications – People living with dementia or sight loss are at high risk of social isolation, increasingly so for those with both conditions. Services that take an inclusive approach to both conditions can provide crucial opportunities for social interaction. Extra care housing has the potential to provide a supportive, community-based environment that can help residents to maintain social contact.

Originality/value – This paper adds much-needed evidence to the limited existing literature, and reflects the views of diverse professionals across housing, health and social care.

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Coping with newly diagnosed upper gastrointestinal cancer: a longitudinal qualitative study of family caregivers' role perception and supportive care needs

Background: Family caregivers of patients with poor prognosis upper gastrointestinal (GI) cancers are at high risk of experiencing psychological distress and carer burden. The early postoperative period is a time of high patient care needs and transition of care, with carers new to the caring role. This study aimed to explore the experiences of family caregivers of people diagnosed with upper GI cancer after surgical intervention to (1) identify their unmet supportive care needs and (2) investigate how family caregivers perceive their role during this time.

Methods: Family caregivers of newly diagnosed postsurgical upper GI cancer patients were recruited. Semi-structured telephone interviews were conducted at 3 weeks and 3 months post-surgery. Analysis involved a constant comparative approach. Sampling was discontinued when information redundancy was achieved. Fifteen family caregivers participated in the first interview and eight agreed to a second interview.

Results: Family caregivers reported significant information and support needs. Family caregiver distress was exacerbated by a lack of patient care knowledge. Access to support was limited by caregivers’ lack of understanding of the health system. Family caregivers view their role as part of their family responsibility.

Conclusions: This study provides new insight into the supportive care needs of family caregivers of upper GI cancer patients and the impact of unmet need on the emotional well-being of family caregivers. These results will inform future supportive care service development and intervention research aimed at reducing unmet supportive care needs and psychological distress of family caregivers of patients with poor prognosis upper GI cancer

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Caring for the carers : the characteristics of district nursing support for family carers

This paper presents findings from an ethnographic study that examined how qualified district nurses’ conceptualized their role in relation to family carers and how they performed this aspect of their role.

A participant observational study involving fieldwork and in-depth interviews with six district nursing teams was undertaken over a 12-month period. Interview transcripts and fieldnotes were analysed by drawing upon the principles of dimensional analysis.

District nurses acted on the assumption that family carers would, by choice or default, provide care. Family carer support was conceptualized as a means of promoting self-care and the patient’s independence from nursing services. The rationale for providing family carer support was based largely on service capacity rather than on carer needs and preferences. Six characteristics of district nursing support for carers were identified: enabling, supporting, mediating, care substitution, crisis prevention and crisis intervention. Family carers were not recipients of district nursing support in their own right but were dependent upon the cared-for person receiving nursing care. This in turn was conditional upon others (general practitioners and hospitals) making appropriate patient referrals. Family carer support was also conditional upon effective communication and family carer receptiveness.

As the scope of home-based nursing continues to increase, district nurses need to take a more active stance in providing family carer support and adopt a family rather than patient-focused approach in order that family carers might be supported more effectively.

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Housing and support options for people with learning disabilities: draft

The guide is to help Partnership Boards write plans on ‘housing and support’. Partnership Boards have to write these plans by winter 2002/3. This guide has ideas to help them do this well. The ‘housing and support plans’ will give people with learning disabilities more choice about: where they live.who they live with.and who gives them support. Some of the different types of housing and support the guide talks about are: supported living, living in small ordinary houses, village communities,and living with family and relatives.

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We're all in it together: supporting young carers and their families in Australia

Although recent initiatives in Australia have attempted to respond to the needs of children and young people with care responsibilities, many continue to be unable to access responsive supports. A qualitative, exploratory study was conducted to identify the current needs and barriers to services for young carers and their families in Canberra, Australia. This paper focuses on a range of family, service and systems level issues that impede young carers' access to services. The findings are based on semistructured, face-to-face interviews conducted with 50 children and young people with care responsibilities. Purposive and snowballing sampling were used to recruit the sample. Peer researchers were involved in the development of the research parameters and conducted and analysed interviews. Young carers in this sample reported high levels of need but low levels of support provided formally and informally by their extended families and the service sector. Major barriers to support included reluctance within families to seek assistance for fear of child removal, negative intervention and increased scrutiny; the families' lack of awareness of available services; a lack of flexibility and responsiveness to the holistic needs of families; and a lack of service collaboration. The importance of recognising the specific needs of each member within the family unit was particularly highlighted as was the need for responsive and co-ordinated service supports.

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Staying put: keeping the family home for adults with a learning disability

Valuing People reminds us that 60 percent of adults with learning disabilities are still living at home being supported by relatives. The author investigates how older carers could best use the family home in planning for the future and reviews the different arrangements families can put in place to ensure a son of daughter can continue to live at home.

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How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventions and their effectiveness

Introduction: Informal caregivers needs in cancer/advanced disease are largely unmet. The science of carer intervention evaluation is methodologically challenging, and the evidence historically weak.

Objective: This systematic review updates an earlier effectiveness review to determine both the effectiveness of subsequently published intervention studies, and the current state of science.

Method: The evidence was identified and appraised using a comprehensive search strategy. Articles were searched from 2001 to 2010 using the following electronic databases: Medline, PsychINFO and CINAHL. Inclusion criteria were studies reporting intervention data for informal adult caregivers of a patient with a diagnosis of cancer or receiving palliative care. The design and evidence rigour were assessed using the Jadad Rating Scale, and the Quality Rating Scale.

Results: 33 studies met inclusion criteria. From the original review, an encouraging increase was identified in the number of evaluations (from 8 to 33), in carer-specific interventions (from 6 to 17) and in the robustness of the study design (an increase from 2 to 12 studies with before/after measures, comparison groups and prospective data).

Conclusions: The evidence suggests a rapid increase in the number of robust intervention studies. However, the range of models remains narrow in relation to caregivers’ needs and preferences.

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Considerations in developing and delivering a non-pharmacological intervention for symptom management in lung cancer: the views of health care professionals

Background: A respiratory distress symptom cluster has recently been identified in lung cancer associated with breathlessness, cough and fatigue, and the study reported here is part of a wider body of work being undertaken to develop a novel non-pharmacological intervention (NPI) for the management of this symptom cluster. The current paper reports the views of health care professionals (HCPs) involved with cancer care regarding the most appropriate ways of developing and delivering such a novel intervention.

Methods: Five focus groups, supplemented with additional telephone interviews, were conducted with a range of both community- and acute-based HCPs involved in symptom management for lung cancer patients. Participants included oncologists, palliative care consultants, specialist nurses, occupational therapists and physiotherapists. The focus groups were transcribed verbatim and analysed using NVIVO to support a framework analysis approach.

Results: The current delivery of NPIs was found to be ad hoc and varied between sites both in terms of what was delivered and by which health care professionals. The provision of NPIs within acute medical settings faced common problems concerning staffing time and space, and there was a recognition that the preference of most patients to make as few hospital visits as possible also complicated NPI teaching. Moreover, there may only be a small window of opportunity in which to effectively teach lung cancer patients a novel NPI as the period between diagnosis and the onset of severe symptoms is often short.

Discussion: The participants agreed that the novel symptom management NPI should be individually personalised to the needs of each patient and be available for patients when they become receptive to it. Moreover, they agreed that the intervention would be most effective if delivered to patients individually rather than in groups, outside acute medical settings where possible and closer to patient’s homes, should be delivered by an HCP rather than a trained volunteer or lay person and should involve informal carers wherever practicable.

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The effect of caregiving on women in families with Duchenne/Becker muscular dystrophy

Duchenne/Becker muscular dystrophy (DBMD) is a disorder of progressive muscle weakness that causes an increasing need for assistance with activities of daily living. Our objective was to assess the psychosocial health and contributing factors among female caregivers in families with DBMD. We conducted a survey of adult women among families with DBMD in the United States (US) from June 2006 through January 2007, collecting data related to the care recipient, perception of caregiving demands, personal factors, and socio-ecologic factors. Life satisfaction, stress, and distress were assessed as outcomes. Existing validated instruments were used when available. We received responses from 1238 women who were caring for someone with DBMD, 24.2% of whom were caring for two or more people with DBMD. Caregivers were more likely to be married/cohabitating than women in the general US population, and a high level of resiliency was reported by 89.3% of caregivers. However, the rate of serious psychological distress was significantly higher among caregivers than among the general population. Likewise, 46.4% reported a high level of stress, and only 61.7% reported that they were satisfied with their life. A high level of caregiving demands based on the Zarit Burden Interview (ZBI) was reported by 50.4% of caregivers. The post-ambulatory phase of DBMD was associated with decreased social support and increased ZBI scores. In multivariate logistic regression modelling, life satisfaction was dependent on high social support, high resiliency, high income, and form of DBMD. Distress and high stress were predicted by low resiliency, low social support, and low income. Employment outside of the home was also a predictor of high stress. Interventions focused on resiliency and social support are likely to improve the quality of life of DBMD caregivers, and perhaps caregivers of children with other disabilities or special health care needs as well.

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'Habitus and Bureaucratic Routines', cultural and structural factors in the experience of informal care - A qualitative study of Bangladeshi women living in London

This article draws on Bourdieu's notion of habitus to address the interaction between cultural and structural factors in influencing the experience of informal care among Bangladeshi women in London. The authors present a secondary analysis of a qualitative study focusing on the accounts of informal care. The data were drawn from a two-year study with Bangladeshi women aged 35—55. Thirty-two out of the 100 women in the original study were providing care, mostly in isolated circumstances and with little or no formal support. The authors analysed the accounts of these 32 women and in the context of high levels of suffering and distress, three key themes emerged: amplification of suffering, dispositions of duty and religion and entitlements and fields of struggle. The gaps in access to formal support faced by these women suggest that strong cultural and structural forces determined their experience of informal care and the meanings they attached to their role as informal carers. Drawing on the work of Bourdieu and others, the authors suggest that where there is a lack of agency and resistance to support services, the explanation needs to move beyond poor information and language issues to a more rounded understanding of relationship between habitus and conflicts over local fields of welfare.

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Carer burden in dementia

For the carer, supporting a person suffering from dementia of an aetiology is stressful. This review summarises some of the factors associated with stress and some of the interventions aimed at alleviating distress.

Development of an instrument to measure self-efficacy in caregivers of people with advanced cancer

OBJECTIVE: Informal caregivers of people with advanced cancer experience many negative impacts as a result of their role. There is a lack of suitable measures specifically designed to assess their experience. This study aimed to develop a new measure to assess self-efficacy in caregivers of people with advanced cancer.

METHODS: The development and testing of the new measure consisted of four separate, sequential phases: generation of issues, development of issues into items, pilot testing and field testing. In the generation of issues, 17 caregivers were interviewed to generate data. These data were analysed to generate codes, which were then systematically developed into items to construct the instrument. The instrument was pilot tested with 14 health professionals and five caregivers. It was then administered to a large sample for field testing to establish the psychometric properties, with established measures including the Brief Cope and the Family Appraisals for Caregiving Questionnaire for Palliative Care.

RESULTS: Ninety-four caregivers completed the questionnaire booklet to establish the factor structure, reliability and validity. The factor analysis resulted in a 21-item, four-factor instrument, with the subscales being termed Resilience, Self-Maintenance, Emotional Connectivity and Instrumental Caregiving. The test-retest reliability and internal consistency were both excellent, ranging from 0.73 to 0.85 and 0.81 to 0.94, respectively. Six convergent and divergent hypotheses were made, and five were supported.

CONCLUSIONS: This study has developed a new instrument to assess self-efficacy in caregivers of people with advanced cancer. The result is a four-factor, 21-item instrument with demonstrated reliability and validity. Copyright © 2012 John Wiley & Sons, Ltd.

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Continuing to pay : the consequences for family caregivers of an older person's admission to a care home

This paper aims to discuss the reasons why caregiving in the community had ended for a sample of dependent older people, two-thirds of whom had dementia. Comparisons are made between the situation of a spouse caring for a partner and a daughter or son caring for a parent in a separate household. Spouses in the study had often sustained a greater burden before caregiving collapsed than had daughters or sons. They were less likely, however, to have had support from the home care service. When caregiving in the community ended and the dependent older person entered a care home, family caregivers themselves often had a financial price to pay. Currently spouses have a legalliability to contribute to a partner’s care costs. The implementation of this liability depended on individual local authority policies and the views of the individual social worker doing the financial assessment. Because of the UK’s means-testing rules, daughters and sons were often penalized because a parent’s assets that they might have inherited had to be used to meet the care home costs. Resentment at being disinherited was related to the daughter’s or son’s family situation. Those with children or grandchildren themselves were far more likely to be angry than those without children.

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Carers at the heart of 21st-century families and communities

This strategy sets the government agenda for supporting carers over the next 10 years ranging across the span of government’s responsibilities. Short-term changes are to be implemented over the next three years, and longer-term priorities are identified for the next 10 years. The strategy addresses breaks, personalisation of services, income, information and advice, the workplace, training for the workforce, access to employment, emotional support, the health of carers and the specific needs of young carers. . The strategy is based on the views and concerns of carers themselves, drawn from consultation across the country.

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Caring for carers

Department of Health strategy for supporting informal carers 'Carers at the Heart of 21st Century Families and Communities' (2008), which addresses government short-term commitments and a 10-year plan. The key principles are summarised and reactions from carers and organisations are reviewed. A case study of a community learning disability nurse supporting a mother and her learning disabled son is included. [(BNI unique abstract)] 

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A terminal diagnosis: the carers' perspective

This qualitative study explored the views of spouse carers in relation to the emotional impact of caring for a partner with a chronic or terminal illness. The study population consisted of nine full-time spouse carers, recruited using a snowball sampling strategy.

Semi-structured interviews took place in the carers’ homes. These were recorded and transcribed verbatim. The data were then analysed using constant comparative analysis. Themes identified included the emotional and physical health of the carer, personality changes in the spouse, relationship issues, denial, anticipating death, accessing support and coping strategies. Findings indicate that these carers experienced a whole range of feelings and emotions, which impacted on their health and well-being. They included fatigue, stress, distress, anxiety, depression, feelings of isolation and suicidal thoughts. These were particularly profound around the time of diagnosis, end of treatment, during a relapse and most particularly around the time of death. An increasing number of terminally ill people are now expressing a preference to be cared for at home. The potential risks to the health of caregivers therefore need to be taken into account. This study highlights the importance of assessing the needs of carers in order to identify those at risk of compromised health, which would then allow those requiring support to be offered prompt referral to specialist services.

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Caring and Retirement: Crossroads and Consequences

As older workers move closer to retirement, they are more likely to take on caring roles. This may affect their health, retirement plans, and income security. Retired men and women experience the caring role differently, with men less likely to be adversely affected and more likely to accept services and to derive satisfaction from caring. Carers make an important contribution to the lives of the people they care for and to the community. Caring is a productive role that can be sustained into older age, as long as the carer's health and well-being are maintained. More research is needed on the relationship between retirement and caring, to explore the extent of caring and its impact on retirement plans, income, and the physical and mental health of retired carers. This information could then be built into retirement planning to better prepare older workers for this important role. Caring roles and retirement intersect in several ways. About 6 million Americans, 2.6 million Australians, and 6 million people in the United Kingdom are informal carers. People (especially men) are more likely to take on caring roles as they get older and leave the paid workforce. The need to care for a spouse or older relative can be an unanticipated outcome or a precipitator of retirement. Retirement may coincide with illness or disability of a parent or spouse, or may be forced by the demands of caring. Caring may bring about major changes to retirement plans. The financial impact of having been a carer during one's working life may also be felt most keenly on retirement, through the lack of opportunities for savings and retirement fund co-contributions.

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Nothing on the Move or Just Going Private? Understanding the Freeze on Child- and Eldercare Policies and the Development of Care Markets in Italy

Since the 1990s European conservative-corporatist welfare states have expanded public support for child-and eldercare needs. This is in marked contrast to Southern European countries, of which Italy is a paradigmatic example. In Italy, the traditional configuration (limited development of social services coupled with the importance of informal care, mainly provided by women) has recently come under strain, also because of the increasing employment of women. Nonetheless, rather than the development of new policies, this has given rise to a hybrid combination of informal care and the development of a loosely regulated and little supported care market. In this sense, the article asks why care in Italy has been "going private" instead of "going public". It is argued that cultural features and political ideology do not provide a sufficient explanation: in addition to sharp financial constraints, the structure and functioning of the state and labor market and migration regulation need to be considered.

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Direct payments guidance: Community Care, Services for Carers and Children's Services (Direct Payments (Wales) Guidance 2011

Guidance to help local authority social services in making, managing and administering direct payments. The guidance applies to children's adults' services and services for carers. It explains how direct payments schemes should be developed locally, how issues of consent, capacity and ability to manage should be approached, and how direct payments should be used. It sets out specific delivery issues, including: choice and risk; health and safety; close relatives; direct payments recipients as employers; and Criminal Record Checks. It then explains where additional support is required and available, describes the monitoring and review process, and includes a section on troubleshooting . Further information and contacts are included in the annexes. The guidance replaces the Direct Payments Policy and Practice Guidance 2004.

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Telephone support group intervention for persons with hemophilia and HIV/AIDS and family caregivers

The purpose of this pilot project was to test the feasibility of a telephone support group intervention for persons with hemophilia and HIV/AIDS and for their family caregivers. Their support needs were unique because they did not identify with predominant groups of persons with AIDS and were geographically dispersed from peers. The 12 week intervention involved separate telephone support groups for hemophiliacs and for family caregivers. The two groups, comprised of a predetermined maximum of six people, were co-led by a professional and a peer. The support group for family caregivers involved six people and the group for men with hemophilia included five people, including one peer facilitator and one professional facilitator in each group. The telephone support group discussions were taped, transcribed, and analyzed for prevalent themes. The peer and professional facilitators maintained weekly field notes. All participants reported that the telephone groups had a positive impact on meeting their support needs. They believed that they had benefitted from sharing information and that the support groups had decreased their feelings of isolation and loneliness. Participants, however, contended that the intervention should be longer than 12 weeks.

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Non-malignant palliative care: striving for equity

The article explores the problems associated with the provision of palliative care to people with non-malignant disease. The major challenges to the provision of such care include difficulties around prognostication and a reluctance to discuss end-of-life issues. Information is also presented on symptoms management and the need to support informal carers.

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Social work education case study: Kingston University and St George's University London

Service users, carers and academics describe participation in the social work degree at Kingston University and St George's University London. It looks at the different ways that users and carers are involved in the course, including teaching, role-playing activities, marking students' work and the selection process for students applying to on the course. It also looks at the importance of the university providing appropriate training and support, the benefits students get from contact with users and carers and what users and carers gain from the experience. The film will be of interest to social worker educators, students on social work courses, people working more broadly in co-production/participation and service users and carers.

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Standardization of the Maristán Scale of Informal Care in people with schizophrenia and other psychoses

OBJECTIVE: No instrument has been developed and validated across cultures to measure the degree of support provided by informal carers to people with schizophrenia. We aimed to develop such a measure.

METHOD: The Maristán Scale of Informal Care was developed directly from the views of patients with schizophrenia in six countries. Face-to-face interviews were carried out with participants and 103 were repeated after 30 days. Principal Axis Factoring followed by Promax rotation evaluated the structure of the scale. Horn's parallel combined with bootstrapping determined the number of factors. Cronbach's alpha estimated the scale's internal consistency and intra-class correlation its test-retest reliability.

RESULTS: A total of 164 interviews were undertaken, 103 with re-test. The Horn's Parallel Analysis and the analysis of the Promax rotation revealed one factor. Cronbach's alpha was 0.89. Intra-class correlation coefficient was 0.56 (95% CI 0.42-0.68) and this increased to 0.64 (95% CI 0.51-0.75) after removing two outlying values. Patients from Argentina recorded the lowest scores (poor informal support/care).

CONCLUSION: The Maristán Scale of Informal Care is a reliable instrument to assess the degree of support provided by informal carers to people with schizophrenia across cultures. A confirmatory factor analysis is needed to evaluate the stability of its factor structure. © 2013 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

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Understanding stroke survivors' and informal carers' experiences of and need for primary care and community health services--a systematic review of the qualitative literature: protocol

Introduction Despite the rising prevalence of stroke, no comprehensive model of postacute stroke care exists. Research on stroke has focused on acute care and early supported discharge, with less attention dedicated to longer term support in the community. Likewise, relatively little research has focused on long-term support for informal carers. This review aims to synthesise and appraise extant qualitative evidence on: (1) long-term healthcare needs of stroke survivors and informal carers, and (2) their experiences of primary care and community health services. The review will inform the development of a primary care model for stroke survivors and informal carers.

Methods and analysis We will systematically search 4 databases: MEDLINE, EMBASE, PsycINFO and CINAHL for published qualitative evidence on the needs and experiences of stroke survivors and informal carers of postacute care delivered by primary care and community health services. Additional searches of reference lists and citation indices will be conducted. The quality of articles will be assessed by 2 independent reviewers using a Critical Appraisal Skills Programme (CASP) checklist. Disagreements will be resolved through discussion or third party adjudication. Meta-ethnography will be used to synthesise the literature based on first-order, second-order and third-order constructs. We will construct a theoretical model of stroke survivors’ and informal carers’ experiences of primary care and community health services.

Ethics and dissemination The results of the systematic review will be disseminated via publication in a peer-reviewed journal and presented at a relevant conference. The study does not require ethical approval as no patient identifiable data will be used.

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Best practice in fall prevention: roles of informal caregivers, health care providers and the community

Falls are an important public health problem for older adults, resulting in significant morbidity and mortality, as well as healthcare costs. Evidence supports the assessment of older adults' fall risks and implementation of interventions to reduce these risks. Older adults are the key stakeholder in preventing falls, but need the support of their informal caregivers, healthcare providers, and community groups. This article addresses the roles of these additional stakeholders in providing and supporting best practices in fall prevention. Together these stakeholders can assist older adults in self-management of fall prevention, based on the preferences of the individual, local resources, and available programmes and healthcare services.

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Local authorities' use of carers grant: a report prepared for the Department of Health

This is the report of a study undertaken by the University of Leeds and commissioned by the Department of Health that aimed to get a better understanding of how local authorities in England spent their Carers' Grant allocations between 2005 and 2007 and how it enabled them to improve support for carers in their area. First introduced in April 1999, the Carers' Grant is provided to all councils with responsibility for social services in recognition of the support carers need for breaks and other services. [DH website abstract]

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Adult social care: summary of final report

Adult social care refers to the responsibilities of local social services authorities towards adults who need extra support. The legal framework for the provision of adult social care services dates back to 1948, and consists of a complex and confusing patchwork of legislation. A project to reform legal framework of adult social care law in order to address inconsistencies was announced in June 2008. This document summarises the main recommendations from the final report. Coverage includes: the structure of the reform; statutory principles; assessments; eligibility; carers' assessments and eligibility; provision of services; adult protection; ordinary residence and portability.

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Supported cognitive-behavioural self-help versus treatment-as-usual for depressed informal carers of stroke survivors (CEDArS): study protocol for a feasibility randomized controlled trial

Background: Increased life expectancy has resulted in a greater provision of informal care within the community for patients with chronic physical health conditions. Informal carers are at greater risk of poor mental health, with one in three informal carers of stroke survivors experiencing depression. However, currently no psychological treatments tailored to the unique needs of depressed informal carers of stroke survivors exist. Furthermore, informal carers of stroke survivors experience a number of barriers to attending traditional face-to-face psychological services, such as lack of time and the demands of the caring role. The increased flexibility associated with supported cognitive behavioral therapy self-help (CBTsh), such as the ability for support to be provided by telephone, email, or face-to-face, alongside shorter support sessions, may help overcome such barriers to access. CBTsh, tailored to depressed informal carers of stroke survivors may represent an effective and acceptable solution.

Methods/Design: This study is a Phase II (feasibility) randomized controlled trial (RCT) following guidance in the MRC Complex Interventions Research Methods Framework. We will randomize a sample of depressed informal carers of stroke survivors to receive CBT self-help supported by mental health paraprofessionals, or treatment-as-usual. Consistent with the objectives of assessing the feasibility of trial design and procedures for a potential larger scale trial we will measure the following outcomes: a) feasibility of patient recruitment (recruitment and refusal rates); (b) feasibility and acceptability of data collection procedures; (c) levels of attrition; (d) likely intervention effect size; (e) variability in number, length and frequency of support sessions estimated to bring about recovery; and (f) acceptability of the intervention. Additionally, we will collect data on the diagnosis of depression, symptoms of depression and anxiety, functional impairment, carer burden, quality of life, and stroke survivor mobility skill, self-care and functional ability, measured at four and six months post-randomization.

Discussion: This study will provide important information for the feasibility and design of a Phase III (effectiveness) trial in the future. If the intervention is identified to be feasible, effective, and acceptable, a written CBTsh intervention for informal carers of stroke survivors, supported by mental health paraprofessionals, could represent a cost-effective model of care.

Trial registration: Current Controlled Trials ISRCTN63590486.

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The nature and scope of stressful spousal caregiving relationships

The caregiving literature provides compelling evidence that caregiving burden and depressive symptoms are linked with stressful care relationships, however, relational difficulties around caregiving are seldom described in the literature. This article presents findings from content analysis of baseline interviews with 40 Alzheimer’s disease (AD) and Parkinson’s disease (PD) spousal caregivers enrolled in a home care skill-training trial who identified their care relationship as a source of care burden. Disappointment and sadness about the loss of the relationship; tension within the relationship; and care decision conflicts within the relationship were recurrent themes of relational stress in caregiving. These spousal caregivers had relationship quality scores below the mean and burden and depressive symptom scores above the means of other caregivers in the study. These findings provide support for developing dyadic interventions that help spouses manage relational losses, care-related tensions, and care decision-making conflicts.

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An evaluation of the needs and service usage of family carers of people with dementia

This study investigated, by way of interview (n=45), the needs of those caring for a person with dementia and their satisfaction with current services in the Caerphilly County Borough of South Wales. Carers reported having the most difficulty coping with the demands on their time and the emotional strain associated with caring. Carers requested more information regarding available services, the diagnosis of dementia and the legal and financial aspects of caring. They also mentioned the need for a night‐sitter service, a 24‐hour helpline, more support groups and more visits from social workers and community psychiatric nurses (CPNs). On the whole, the carers were satisfied with the services provided, although their use of these services was not extensive. However, issues around lack of support, quality and availability of homes and hospitals and poor communications were identified as areas of concern. The findings were welcomed by strategic planners and the information is being used as a basis for developing and improving specific carer support services.

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Dysphagia: the challenge of managing eating and drinking difficulties in children and adults who have learning disabilities

This review explores some of the key issues relevant to children and adults who have dysphagia, or eating, drinking and swallowing difficulties, and a learning disability. It explores the methods for attempting to identify this area of difficulty effectively, and reflects on some of the other issues that may affect management, such as carer support and training and use of appropriate communication strategies to support and enable participation from the client with learning disability.

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Bridging troubled waters: family caregivers, transitions and long term care

Families are the bedrock of long-term care, but policymakers have traditionally considered them “informal” caregivers, as they are not part of the formal paid caregiving workforce. As chronic and long-term care systems have become more complex and as more demanding tasks have been shifted to families, this view is no longer sustainable. The care transition process offers a critical opportunity to treat family caregivers as important care partners. Enhancing their involvement, training, and support will contribute to reducing unnecessary rehospitalizations and improving patient outcomes. The contributions and experiences of family caregivers should be considered in gathering information to shape policies and practice; training health care professionals; developing programs; and reforming financing.

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Young adult carers feel double the pressure at exam time

The article discusses the call of six leading charities for teaching professionals to take note of the huge number of young carers and young adult carers who are providing practical and emotional support to their sick or disabled family members and show how they are building carer-friendly communities. The charities, during Carers Week 2015, highlighted the lack of identification of young carers and young adult carers which leaves them without support.

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Using experience-based co-design (EBCD) to enhance support for carers in the chemotherapy outpatient setting

Developments in diagnostics and treatment  have contributed to increasing numbers of people becoming long term cancer survivors. However, these improvements are not always reflected in better patient experience...

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Managing a dual role: working carers in social services

The article addresses the issue of working carers in social services - employees who have caring responsibilities for adults outside work. Where employers fail to support carers, costs can be high. Ways of developing carer-friendly policies are considered. 

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Social Services and Well-being (Wales) Act: assessing and meeting needs

Information leaflet which summarises key points relation to the assessment and meeting care and support needs by local authorities under the Social Services and Well-being (Wales) Act. The leaflet covers assessing an individua'l's needs when the individual is a child or a carer; whether it is possible for a person can refuse a needs assessment; what happens after an assessment; and what to do if an individual does not have 'eligible needs'.

The Oxford Friends and Family Empowerment (OFAFE) service: support and education for those affected by friends or family with personality disorder

The Oxford Friends and Family Empowerment (OFAFE) service is a carer support service that originated in a collaboration between the Oxfordshire Complex Needs Service and the national mental health charity Rethink. OFAFE provides support and education for adults supporting an individual with a personality disorder. This paper describes the background and operation of the OFAFE service, along with the early stages of the development of a similar service for young carers, the Young Friends and Family Empowerment (YFAFE) service.

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Supporting families and carers of drug users: a review; summary

This research summary provides an overview of the findings from a review of the literature on the needs of, and services for, families of drug users. A literature search and review was conducted using standard bibliographic search procedures in order to: establish what is known about the support needs of families of drug users; establish what is known about effective ways of addressing those needs; examine whether, and how, family support groups/ services link with other services; examine whether involving families within the treatment or service offered to the drug user has beneficial effects upon the family and the drug user.

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The influence of social support on caregiver coping

Investigations into the act of proving care to a dementing family member typically approach the phenomenon from a stress/burden paradigm. Many studies have sought to highlight the relationship between of a range of dementia care factors (such as illness duration, patient symptoms/characteristics, service provision, etc.) and the experience of caregiver stress. Caregiving a spouse with dementing illness is complex and multidimensional (Gubrium, 1995) it is therefore not surprising that the vast majority of stressor-based approaches, though very revealing, have been largely equivocal in their findings. The relationship between the social support of family and friends and caregiver coping is no exception and therefore remains essentially unclear particularly in terms of its contribution in ameliorating stress (Thompson et al, 1993). Caregiver studies do however consistently highlight the pathogenic qualities of coping with an experience in which 'families are faced with often overwhelming and uncontrollable stress than can take a toll on their emotional health and well-being' (Zarit et al, 1998; Bourgeois et al, 1996). This article, emanating from a PhD study into caregiver coping (Upton, 2001), illuminates the study of caregiving from a different perspective. It highlights and describes how phenomenological exploration deepens our understanding of how and why spouse caregivers cope and uses the influence of social support as an exemplar of the value and need for such exploration both for its own sake and also to inform service providers. The results revealed a universal phenomenon of psycho-physical distancing by family and friends affecting all forty-six spouse caregivers included in this study. The implications of these finding are discussed along with what constituted social support for these carers. Other phenomenological insights are revealed, not least how the individual caregiver's relationship to time, space and their own identity shaped their caregiving experiences.

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Quality of life measures for carers for people with dementia: measurement issues, gaps in research and promising paths

Background: providing support to a family member with dementia often comes at a cost to the quality of life (QoL) of the carer (caregiver), giving rise to current and future unmet needs for health and social care and support themselves. These have important implications for costeffective health and social care support services and pathways. This article summarises the findings of a scoping review of the literature on QoL measures for carers of people with dementia that was commissioned by the Medical Research Council to address what is ‘state of the art’ in measurement and identification, any gaps in the evidence base, and challenges for further research.

Method: a scope of the literature using Medline and Psychlit (all years) as these are particularly relevant to health psychology was undertaken in March 2013, using combinations of the following keywords: quality of life, measure, scale, caregiver (including carer), chronic illness (the term long-term condition is generally captured under this phrase), dementia, cognitive impairment, Alzheimer’s disease. Results: there is a dearth of carer-reported QoL measures, in contrast to the existence of proxy scales for carers which are used to measure the patient’s/client’s QoL (prevalent in relation to dementia). Several methodological challenges were identified.

Conclusion: caring for people with dementia often has both negative and positive consequences which need inclusion in measures but these may vary by individual and over time. The lack of consensus about what to measure and how in QoL of carers of people with dementia does not help practitioners or service funders. Measures need to be appropriate for younger and older carers, type of carer and caring tasks, and be sensitive to cultural and sociodemographic differences.

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Burden and happiness in head and neck cancer carers: the role of supportive care needs

Purpose: Our study aimed to investigate the relationship between unmet supportive care needs and carer burden and happiness, in head and neck cancer (HNC).

Methods: Two hundred eighty-five HNC informal carers were sent a postal questionnaire between January and June 2014, which included the supportive care needs survey for partners and caregivers of cancer survivors (SCNS-P&C) and the CarerQol, which assesses burden and happiness. Multiple regression analysis was conducted to examine the association of (i) carer characteristics, (ii) carer situation, and (iii) unmet supportive care needs, with carer burden and happiness

Results: One hundred ninety-seven carers completed the questionnaire (response rate = 69 %), 180 of whom were included in the analysis. The majority were female (76 %), not in paid employment (68 %) and caring for their spouse (67 %). On average, carers reported relatively low levels of burden and relatively high levels of happiness. Carer factors explained 42 % of variance in levels of burden and 24 % of variance in levels of happiness. Healthcare service needs were associated with carer burden (β = .28, p = .04), while psychological needs (β = −.38, p = .028), health care service needs (β = −.30, p = .049), information needs (β = .29, p = .028), carer comorbidity (β = −.18, p = .030), and gender (β = −.16, p = .045) were associated with happiness.

Conclusions: Our results indicate that different aspects of carer characteristics and unmet needs are associated with carer burden and happiness. Efforts directed at reducing unmet healthcare service needs in particular are merited given their associations with both aspects of carer quality of life.

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Young Carers' Movement in Toronto

The article focuses on the Young Carers Program of Hospice Toronto, a non-profit group that provides volunteer-based, in-home hospice and palliative care services. Information on the key objectives of the program is provided. Both children and youth who assumes a caregiving role for a family member are supported by the program. A variety of weekly activities, workshops and special events are facilitated by the program throughout Toronto, Ontario.

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Inter-relationships between the economic and emotional consequences of colorectal cancer for patients and their families: a qualitative study

Background: While the evidence-base concerning the economic impact of cancer for patients and their families/carers has grown in recent years, there is little known about how emotional responses to cancer influence this economic impact. We investigated the economic costs of cancer in the context of patients’ emotions and how these both shaped the patient and family burden.

Methods: Health professionals from six hospitals invited patients diagnosed with colorectal cancer (ICD10 C18-C20) within the previous year to take part in the study. Semi-structured face-to-face interviews were conducted with patients and, where available, a family member. Interviews covered medical and non-medical costs incurred as a result of cancer and the impact of these on the lives of the patient and their family. Interviews were audio-recorded. Recordings were transcribed verbatim and these data were analysed qualitatively using thematic content analysis.

Results: Twenty-two patients with colorectal cancer (17 colon and 5 rectal; 14 women and 8 men) were interviewed; 6 were accompanied by a family member. Important cancer-related financial outlays included: travel and parking associated with hospital appointments; costs of procedures; increased household bills; and new clothing. Cancer impacted on employed individuals’ ability to work and depressed their income. The opportunity cost of informal care for carers/family members, especially immediately post-diagnosis, was a strong theme. All patients spoke of the emotional burden of colorectal cancer and described how this burden could lead to further costs for themselves and their families by limiting work and hindering their ability to efficiently manage their expenses. Some patients also spoke of how economic and emotional burdens could interact with each other. Support from employers, family/carers and the state/health services and patients’ own attitudes influenced this inter-relationship.

Conclusions: The economic impact of colorectal cancer on patients and their families is complex. This study suggests that the economic costs and the emotional impact of cancer are often related and can exacerbate each other, but that various factors can meditate this inter-relationship.

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Needs and care of older people living at home in Iceland

Background: The Icelandic old-age care system is universal and the official goal is to support older people live independently for as long as possible. The aim of this study is to analyse living conditions and use of formal and informal care of older people in Iceland. Methods: The results are based on the new study ICEOLD, a telephone survey which included questions on social network, health, activities of daily living, and received support from the community and/or from relatives, neighbours, and friends. Results: Almost half of the sample (47%) receives some kind of care, with 27% of them receiving only informal care, which is understood to mean that informal care is of great importance and families are the main providers of help. For hypothetical future long-term care, older people wish to be cared for in their homes, but those already in need of assistance prefer to be cared for in institutions. Discussion: Caring relatives are the main providers of support to older people in their homes and it is important to provide them with suitable formal support when the care responsibility increases. Conclusions: As the care system in Iceland is now under reconstruction, the important contribution of informal carers must be recognised and taken into account when planning the care of older people.

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Self-directed support

This audit report examines councils’ progress in implementing the self-directed support strategy in Scotland and their readiness for the Social Care (Self-directed Support) (Scotland) Act 2013. It focuses on councils because they have the lead role, working in partnership with users, carers, third and private sector providers, NHS boards and other organisations. The audit work was carried out between December 2013 and February 2014. It involved a review of a range of published information, case studies in four councils, and interviews with staff and representatives from range of public, private and third sector organisations. The report highlights that councils still have a substantial amount of work to do to fully implement self-directed support. Some have made slower progress than others and they will have to implement the cultural and practical changes more quickly over the next few years. Councils need effective leadership from senior managers and councillors and continued support from the Scottish Government.

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The national outcomes framework for people who need care and support and carers who need support, 2014-15: working document

The national outcomes framework for people who need care and support and carers who need support in Wales has been created to deliver on the actions set out in Sustainable Social Services for Wales: A Framework for Action, and the need to fulfil the duties set out in the Social Services and Well-being (Wales) Act. The framework is made up of a well-being statement and the outcome indicators to measure whether well-being is being achieved. The key objectives of the framework are: to describe the important well-being outcomes that people who need care and support and carers who need support should expect in order to lead fulfilled lives, giving people a greater voice and control over their lives and enable them to make informed decisions to ensure they achieve their personal well-being outcomes; to set national direction and promote the well-being of people who need care and their carers; to provide greater transparency on whether care and support services are improving well-being outcomes for people in Wales using consistent and comparable indicators. This will allow the sector to scrutinise its performance and will shine a spotlight on what needs to be done to improve people’s well-being rather than focussing on the processes involved in delivering social services.

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Transitions to informal care in Great Britain during the 1990s

Objectives: To estimate annual changes and trends in the population of informal carers and to investigate transitions to caregiving by age, gender, locus of care, and level of involvement.

Design: Longitudinal analysis of data from the British household panel survey, 1991 to 1998, an annual prospective survey of a nationally representative sample of more than 5000 private households in England, Scotland, and Wales.

Subjects: Over 9000 adults over 16 years interviewed personally in successive waves of the survey, including around 1300 informal carers each year.

Results: One third of co-resident carers and 40% of extra-resident carers start caregiving each year and similar proportions cease to provide care. Five year period rates are at least 75% higher than the one year prevalence estimates. Almost everyone is involved in caregiving at one time or another and over half are likely to provide 20 hours or more care per week at some point in their lives. Recent trends indicate that more adults are becoming heavily involved in providing longer episodes of care. Although the onset of caregiving peaks in late middle and early older age, above average incidences span three decades or more of adult life. Age variations in the start of caring relationships are driven by the changing demands for care within and between generations over the life course. There is no firm evidence that carers increase their involvement in caring activities over the first three years of a caring episode.

Conclusions: The population of carers is constantly changing as some people stop providing care and others take on a caring role or vary their level of involvement. Policy measures responsive to the diversity of caring roles, and geared around key transitions, are likely to be most effective in supporting carers through changing circumstances. Recognition and support for carers who are heavily involved in caring activities from the outset should be a priority.

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The carers strategy for Wales 2013

This strategy sets out the key actions the Welsh Government intends to take for the remainder of this Assembly Term, up to 2016. It provides a framework for agencies to work together to deliver services and support to carers. Five priority areas are explained: health and social care; identification, information and consultation; young carers and young adult carers; support and a life outside of the caring role; and carers and employment. The strategy contains 18 key actions, which will form the basis of a report to be published by the end of 2013.

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The demographic characteristics and economic activity patterns of carers over 50: evidence from the English Longitudinal Study of Ageing

Studies on informal care provision have often focused on the provision of care for persons with a long term physical or mental ill-health or disability, or problems related to old age. However, the provision of care and support more broadly, for example in the form of childcare for grandchildren, can also impact on various aspects of a carer's life, such as their employment (if under the state retirement age), lifetime earnings and, by extension, pension income in later life. This article uses data from Wave 3 of the English Longitudinal Study of Ageing (ELSA) to explore the demographic characteristics, caring patterns, health status and economic activity patterns of carers aged over 50 in England. The results suggest that the nature of care provision differs across age groups, and that caring can be quite a different experience for older men and women. This article also sheds light on the characteristics of ‘round-the-clock’ carers, a relatively under-researched group which makes up just over one fifth of all carers aged 50 and over.

This article uses data from Wave 3 of the English Longitudinal Study of Ageing (ELSA) to explore the demographic characteristics, caring patterns, health status and economic activity patterns of carers aged over 50 in England.

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Young and free

New measures to support young carers of people with mental problems could have wider implications, says Tim Turner.

Supporting mum

These photographs are just some of nearly 300 taken by young carers to describe their lives. Jo Aldridge and Darren Sharpe report.

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Experience of burden in carers of people with dementia on the margins of long-term care

Objectives: This study aimed to identify the factors determining carer burden in a group of carers supporting people with dementia (PwD) deemed to be at high risk of moving to long-term residential or nursing home care.

Design: National data collected as part of the European RightTimePlaceCare project were analysed. This included 81 dyads of community-dwelling people with dementia and their informal carers.

Methods: Structured face-to-face interviews were conducted in North West England between June 2011 and April 2012. Interviews collected data relating to the person with dementia (cognitive functioning, activities of daily living, neuropsychiatric symptoms and formal and informal dementia care resource use) and carers' level of burden (22-item Zarit Burden Index), hours spent caring and availability of additional informal support.

Results: Logistic regression analysis identified five factors associated with high carer burden: neuropsychiatric symptomatology in the PwD, intensive supervision of the PwD by the carer, being a female carer, being an adult–child carer and absence of informal carer support. Use of home care or day care services was unrelated to burden.

Conclusion: Support programmes focusing on challenging behaviours and risk management may be of benefit to carers. More individually tailored interventions for specific carer groups including female or younger carers may be warranted. The implementation of peer support networks could be beneficial to carers who lack additional family support. Copyright © 2015 John Wiley & Sons, Ltd.

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Caring for a person in advanced illness and suffering from breathlessness at home: threats and resources

Little is known about the factors that mediate the caregiving experience of informal carers at home, which could inform about ways of supporting them in their caregiving role. Our objective was to investigate the caring experience of carers for patients with an advanced progressive illness (chronic obstructive pulmonary disease [COPD], heart failure, cancer, or motor neuron diseases [MND]), who suffer from breathlessness.

A purposive sample of 15 carers was selected. They were recruited via the patients they cared for (who suffered from COPD, cancer, MND, or heart failure) from the hospital and the community. Data were collected through semistructured, in-depth interviews. All were tape-recorded and transcribed verbatim. The analysis used a Grounded Theory approach and NVivo software facilitated the management and analysis of the data.

Several key issues affected caring in a positive or a negative way. The threats to caring were uncertainty, carers' own health problems, an imploded world, negative reactions from outside, person loss, and acute exacerbations. Resources that carers drew on were acceptance, self-care, availability of support, feeling that caring is a shared responsibility with the patient, and “getting on with” caring in case of emergencies. Breathlessness was particularly challenging, and carers did not have any strategies to relieve the symptom. They were ill prepared for acute exacerbations.

Carers need to be included in opportunities for support provision in advanced illness. Negotiated involvement of a health professional could buffer the heavy responsibilities related to home care. They could provide problem-solving skills and build on the resources that carers draw on in response to what they experience as most threatening to their caring role.

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A descriptive profile of caregivers of older adults with MS and the assistance they provide

Purpose. To describe and compare spousal and non-spousal caregivers of older adults with multiple sclerosis (MS), the nature and extent of assistance they provide, and the challenges they experience in the course of their caregiving role.

Methods. This cross-sectional descriptive study uses data from telephone interviews with 302 caregivers of older adults with MS. Descriptive statistics, Chi-square and Wilcoxon tests were used to generate and compare caregiver profiles. A proportional odds model examined factors associated the provision of greater extent of care.

Results. Spousal and non-spousal caregivers differed in age, sex, location of residence, and employment status. The characteristics of the people with MS for whom they cared were very similar. Spousal caregivers assisted with more activities, although non-spousal caregivers provided equivalent caregiving time. Twenty percent of caregivers spent more than 3.5 h per day caregiving. Caregiving time was influenced by cognitive and ADL status of the person with MS, and the number of caregiving activities performed. Challenges reported by caregivers were similar.

Conclusions. Both spousal and non-spousal caregivers of older adults with MS provide substantial assistance, and experience many challenges. Rehabilitation professionals need to be aware of the diversity of caregivers and the assistance they provide to facilitate appropriate support and resources.

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Putting people first: a shared vision and commitment to the transformation of adult social care

Across Government, the shared ambition is to put people first through a radical reform of public services, enabling people to live their own lives as they wish, confident that services are of high quality, are safe and promote their own individual needs for independence, well-being and dignity. This ministerial concordat establishes the collaboration between central and local government, the sector's professional leadership, providers and the regulator.  It sets out the shared aims and values which will guide the transformation of adult social care, and recognises that the sector will work across shared agendas with users and carers to transform people’s experience of local support and services.

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Exploring the risk management strategies of informal carers of mental health service users

This paper presents the finding of an exploratory study examining the risk management strategies of informal carers of mental health service users. Thirteen carers from two cities were interviewed in depth using a semi-structured interview schedule. Participants had been informal carers between four and 20 years and supported users with formal diagnoses of schizophrenia, manic depression and depression. A grounded theory approach was followed to collect and examine data and to test the resulting models of risk management. Three models of risk management are discussed and relate to a wide range of risk posed and faced by the carers' users. The results of this study are compared with those of an earlier study into the risk management strategies of 22 service users with similarities and differences highlighted. 40 refs. [Abstract]

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Challenging behaviour: a guide for family carers on getting the right support for teenagers

This briefing paper provides information for family carers who are supporting a teenager or young adult with severe learning disabilities and behaviour described as challenging, who is approaching transition to adult services. It aims to help carers understand what expect from local services, to help identify what 'good' services look like, to help them ask for the support they and their family need and to help them work in partnership with the professionals. Short sections cover: what is 'challenging behaviour'; your rights; support with challenging behaviour; what good support looks like; working with professionals; planning ahead; choosing where to live in adulthood. Organisations that can provide further information and advice are listed at the end of the briefing.

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Living wages and the ‘making work pay’ strategy

Poverty among workers is a perennial problem. Recently there has been much interest in the idea of living wages. As mechanisms to increase wages above the ‘poverty line’, living wages present an alternative to New Labour’s ‘making work pay’ strategy; a combination of minimum wage regulation and means-tested, in-work relief. Through a comparison of living wages and the ‘making work pay’ strategy this paper critically examines both by focusing upon the aims of the two strategies, their ability to deliver higher incomes to workers and their families, and the assumptions upon which the two strategies are based. The paper demonstrates that while the ‘making work pay’ strategy is more sensitive to need than living wages, outside of wider changes in the social relations of capital and gender, the two strategies are similar in buttressing capitalism and institutionalizing stereotypes of women as dependants and carers.

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Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer)

Background: The ASCOT-Carer is a self-report instrument designed to measure social care-related quality of life (SCRQoL). This article presents the psychometric testing and validation of the ASCOT-Carer four response-level interview (INT4) in a sample of unpaid carers of adults who receive publicly funded social care services in England.

Methods: Unpaid carers were identified through a survey of users of publicly funded social care services in England. Three hundred and eighty-seven carers completed a face-to-face or telephone interview. Data on variables hypothesised to be related to SCRQoL (e.g. characteristics of the carer, cared-for person and care situation) and measures of carer experience, strain, health-related quality of life and overall QoL were collected. Relationships between these variables and overall SCRQoL score were evaluated through correlation, ANOVA and regression analysis to test the construct validity of the scale. Internal reliability was assessed using Cronbach’s alpha and feasibility by the number of missing responses.

Results: The construct validity was supported by statistically significant relationships between SCRQoL and scores on instruments of related constructs, as well as with characteristics of the carer and care recipient in univariate and multivariate analyses. A Cronbach’s alpha of 0.87 (seven items) indicates that the internal reliability of the instrument is satisfactory and a low number of missing responses (<1 %) indicates a high level of acceptance.

Conclusion: The results provide evidence to support the construct validity, factor structure, internal reliability and feasibility of the ASCOT-Carer INT4 as an instrument for measuring social care-related quality of life of unpaid carers who care for adults with a variety of long-term conditions, disability or problems related to old age.

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Exploring the other side of cancer care: the informal caregiver

Objectives: To identify the caregiver outcomes among relatives caring for patients with cancer and to examine the patient and family caregiver variables that predicted for caregiver burden and depression.

Methods: One hundred and thirty caregivers completed the Greek versions of the Burden Interview (BI), the Center of Epidemiology – Depression Scale (CES-D) and the Ways of Coping Questionnaire. Principal component analysis was performed to examine the underlying dimensions of caregiver outcome measures. One-way ANOVA and independent sample t-tests were used to test for differences in burden and depression in relation to demographic variables of interest. One-way ANOVA was used for examining differences in coping strategies.

Findings: One-way ANOVA showed that there are significant differences among the various educational levels (p<0.001) and the income (p<0.005) of the caregiver in terms of overall burden. 66.4% of caregivers had a depression above the usual cutoff point for depression. An independent samples t-test for possible gender differences, showed that there is a significant difference between males and females (p=0.29). In regression analysis it was found that only caregiver's income and patient's age are statistically significant in predicting burden and depression. When considering high-burdened caregivers results showed that there are significant differences in the use of coping strategies (p<0.001).

Conclusions:Caregivers reported high levels of burden and depression. These outcomes of caregiving are related to several variables, but the caregiver's income and patient's age are predictive. Intervention strategies are needed to the vulnerable caregivers to help reduce burden and depression associated with caregiving.

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Spinning off business activities for care giver support: The DISCOVER attempt

Demographic changes in Europe show an increased demand for quality care for family members, through innovative, broadly accessible solutions that have an overarching focus of improving the quality of life for carers through learning. DISCOVER platform is such a technology, based on existing eLearning systems and delivers digital skills training for carers, focusing in particular on opportunities for informal carers as a socially excluded group. DISCOVER business strategy provides a sustainable entity in order to deliver benefits to the carer, and cared-for communities in the future. An appropriate business model is required to support spinning off business activities for care giver support services, but allow the inclusion of those who may be disadvantaged or those who have a high need for support, but a limited ability to afford to pay for solutions.

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Impact on the individual: what do patients and carers gain, lose and expect from being involved in research?

Background: Study feasibility and deliverability can benefit from involving patients and carers in the research process, known as patient and public involvement (PPI). There is less evidence on the experiences of patients and carers themselves and we require more information across a range of studies, health conditions and research stages.

Aims: This study explored how patients and carers in eight diagnostic research specialties have been involved in research, their motivations and the impact involvement had on them.

Method: 143 patients and carers across the Clinical Research Network (CRN) responded to an online semi-structured questionnaire (developed using participatory methodology). Quantitative and qualitative data were analysed.

Results: A range of benefits were reported, including providing a life focus and an improved relationship with illness. Less positive experiences regarding time and money and lack of acknowledgement were also reported, along with suggestions for improvement.

Conclusions: PPI confers many benefits on patients and carers which could increase PPI recruitment if made explicit. More involvement in study recruitment and dissemination would increase the effectiveness of PPI input. Involving a more varied socioeconomic demographic and at an earlier stage is vital. Financial support for lower earners and greater feedback following involvement should also be explored.

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The Disability and Carers Service: oral evidence: Wednesday 19 October 2005: Mr Terry Moran and Ms Vivien Hopkin

Disability and Carers Service (DCS) is part of the Department for Work and Pensions. DCS helps disabled people and carers to lead independent lives by administering and delivering, disability benefits, providing advice on benefits, and supporting the Government's commitment to increasing the inclusion of disabled people in society.

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Occupational changes in caregivers for spouses with stroke and aphasia

Introduction: Stroke is a leading cause of disability worldwide. While health services focus on the needs of diagnosed persons, families provide extensive informal care with diverse effects on daily life and health. Understanding caregivers' experience is critical to support their health and sustained contributions. This exploratory study examined how caring for partners with stroke and aphasia impacts caregivers' activities, identifying possible differences according to race/ethnicity through the lens of occupation.

Method: Mixed methods identified the occupational impact of caring for a partner with stroke and aphasia. Twelve participants completed the Carer Communication Outcome After Stroke, Occupational Gaps Questionnaire, Activity Card Sort, and a semi-structured interview.

Findings: The impact of aphasia on caregivers varied greatly. The Occupational Gaps Questionnaire revealed gaps in cultural activities. On the Activity Card Sort, caregivers experienced occupational loss, primarily in low-demand leisure and social activities. Six themes emerged from the interviews: personal factors, finding new equilibrium, participation barriers, compensations for aphasia, uncertainty, and obligations. Trends differed somewhat by race/ethnicity.

Conclusion: Findings have implications for health professionals working with individuals with stroke and aphasia. The caregivers' experience deserves attention to support their quality of life and wellbeing, which can promote sustained assistance for their relatives with stroke.

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Including families and carers : an evaluation of the family liaison service on inpatient psychiatric wards in Somerset, UK

Purpose– National mental health policies in the UK have a common theme of seeking to develop working partnerships between people who use mental health services, their families and carers and professionals. In Somerset, following a staff training programme, a Family Liaison Service has been developed whereby systemically trained staff work alongside inpatient staff to hold family meetings as part of the assessment and admission process on all wards for working age adults and older people. This article aims to focus on this initiative.

Design/methodology/approach – The article considers the development of the Family Liaison Service and evaluates its progress based on audit data, feedback from families using the service, and a survey of staff experience. Issues raised in developing family inclusive services are discussed.

Findings – Evaluation of the service suggests that, although there is still progress to be made, considerable success has been achieved in embedding the service on inpatient units with a substantial increase in meetings held between staff and families. Feedback from families is positive and staff report increased confidence in engaging with families and carers.

Originality/value – This article describes a transferable model for the implementation of national policy to develop working partnerships with families and carers in mainstream mental health services.

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Involving carers in the teaching, learning and assessment of masters students

Involving patients and carers in teaching, learning and assessment focuses the students on person-centred care by providing the opportunity to listen to, and reflect on, the perspective of patient and/or carer and also allows the students the opportunity to work in partnership with them to effect meaningful change. This paper presents an example at Teesside University where two informal carers have been involved as partners in the programme team of The Master of Arts in Advancing Practice over the past four years. In year two of the programme, the student is required to work within their organisation and governance policies to identify, implement and evaluate a practice development change project. Involving carers at critical points throughout the year has enriched, supported and challenged the students' learning. Evaluation has highlighted the role that carers can play in bringing a new dimension to the students' learning experience. The authors believe that direct involvement of this kind has much potential for other programmes in improving health and social care education which, in turn, will improve health and social care services.

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Barriers to genuine consumer and carer participation from the perspectives of Australian systemic mental health advocates

Background: Consumer and carer participation in mental health service development and evaluation has widespread nominal support. However, genuine and consistent participation remains elusive due to systemic barriers.

Aims: This paper explores barriers to reform for mental health services from the perspectives of consumers and carers actively engaged in advocating for improvements in the mental health system.

Method: Qualitative research with two mental health systemic advocacy organisations analysed 17 strategic communication documents and nine interviews to examine barriers to reform and participation identified by consumer and carer advocates and staff.

Results: A number of individual-level barriers were described, however advocates gave more focus to systemic barriers, for which five themes emerged. These reflected lack of awareness, limited participation opportunities, slow progress for change, policy issues and mental health culture including stigma.

Conclusions: Findings highlight systemic barriers to participation for consumer and carer advocates as a whole and the influence of these barriers on the individual experiences of those engaged in advocacy and representation work. Participants also emphasised the need for leadership to overcome some of these obstacles and move towards genuine consumer and carer participation and reform. Findings are discussed in the context of power within mental health systems.

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Stressors and common mental disorder in informal carers – An analysis of the English Adult Psychiatric Morbidity Survey 2007

This study investigates potential explanations of the association between caring and common mental disorder, using the English Adult Psychiatric Morbidity Survey 2007. We examined whether carers are more exposed to other stressors additional to caring – such as domestic violence and debt – and if so whether this explains their elevated rates of mental disorder. We analysed differences between carers and non-carers in common mental disorders (CMD), suicidal thoughts, suicidal attempts, recent stressors, social support, and social participation. We used multivariate models to investigate whether differences between carers and non-carers in identifiable stressors and supports explained the association between caring and CMD, as measured by the revised Clinical Interview Schedule.

The prevalence of CMD (OR = 1.64 95% CI 1.37–1.97), suicidal thoughts in the last week (OR = 2.71 95% CI 1.31–5.62) and fatigue (OR = 1.33 95% CI 1.14–1.54) was increased in carers. However, caring remained independently associated with CMD (OR = 1.58 1.30–1.91) after adjustment for other stressors and social support. Thus caring itself is associated with increased risk of CMD that is not explained by other identified social stressors. Carers should be recognized as being at increased risk of CMD independent of the other life stressors they have to deal with. Interventions aimed at a direct reduction of the stressfulness of caring are indicated. However, carers also reported higher rates of debt problems and domestic violence and perceived social support was slightly lower in carers than in non-carers. So carers are also more likely to experience stressors other than caring and it is likely that they will need support not only aimed at their caring role, but also at other aspects of their lives.

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Integrating people with dementia and their carers into service design

Purpose – The purpose of this paper is to reflect upon the method of using a participatory action research (PAR) approach and offer some insight into the processes of integrated working with service users and carers. The Public Bodies (Joint Working) (Scotland) Bill, 2013 (The Scottish Government, 2013) is focused on integrated and partnership working within the systems of health and social care. The author begins with a person-centred approach and explore the value of placing service user engagement for successful integrated practice. Through these reflections on PAR, the author offers some new lessons about what integration means to practitioners at the front line of service delivery.

Design/methodology/approach – This paper offers insights from a practitioner-research project which the author conducted within the author ' s own practice. It is a reflection on the process of using PAR with five people with dementia and their carers in a research project on the use of music to increase wellbeing for both the person with dementia and their carer. PAR helps to gain service user views but supports service users and providers to work in an integrated way.

Findings – This paper offers insights from a practitioner-research project which the author conducted within the author ' s own practice. It is a reflection on the process of using PAR with five people with dementia and their carers in a research project on the use of music to increase wellbeing for both the person with dementia and their carer. PAR helps to gain service user views but supports service users and providers to work in an integrated way.

Originality/value – A person-centred approach to service user participation in the research process has valuable insights for the integration of service users in the design and delivery of health and social care. The insights offered here highlight the complex processes which make-up effective engagement with service users and carers. It offers concrete details on the challenges which practitioners may face when they work to integrate service users and carers into the planning process. It also highlights the benefits of shared problem-solving and control. Practitioners already play an invaluable role in providing integrated care. This paper serves a reminder of much of what we already know and do. It also asks us to reconsider the focus of integration as a person-centred process.

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Primary caregivers of cancer patients in the palliative phase: a path analysis of variables influencing their burden

Research has shown that several variables influence the burden of primary caregivers of cancer patients staying at home in the palliative phase, but the associations between these variables have hardly been explored. The aim of this study was to examine the associations of theory-driven variables with the caregivers’ burden by means of path analysis. The sample consisted of 96 caregivers of cancer patients in the palliative phase staying at home recruited from a hospital trust in Norway. The dimensions of burden from the Caregiver Reaction Assessment, namely self esteem, lack of family support, impact on finances, and impact on daily schedule, were used as the dependent variable. The following independent variables were tested in the models: the patients’ levels of pain, fatigue, and nausea; and the caregivers’ physical quality of life, anxiety and depression, and social support.

The Partial Least Squares approach to structural equation modelling was used for the path analysis. Model 1 shows the direct associations between the independent variables and the dependent variable, explaining 16% of the variance in caregiver burden. Model 1 supports the finding that only caregivers’ depression has a direct significant association with caregiver burden, and shows further that the effects of the other independent variables on burden are mediated through depression. In Model 2, anxiety and depression are mediating factors between three other independent variables and caregiver burden, and 12% of the variance is explained. Model 2 supports none of the independent variables as antecedents of burden. Testing of the models suggested that caregivers’ depression was the main factor associated with caregiver burden, but also an important mediator of indirect associations of indirect associations of caregivers’ anxiety and physical health.

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A structured training programme for caregivers of inpatients after stroke (TRACS) : a cluster randomised controlled trial and cost-effectiveness analysis

Background: Most patients who have had a stroke are dependent on informal caregivers for activities of daily living. The TRACS trial investigated a training programme for caregivers (the London Stroke Carers Training Course, LSCTC) on physical and psychological outcomes, including cost-effectiveness, for patients and caregivers after a disabling stroke.

Methods: We undertook a pragmatic, multicentre, cluster randomised controlled trial with a parallel cost-effectiveness analysis. Stroke units were eligible if four of five criteria used to define a stroke unit were met, a substantial number of patients on the unit had a diagnosis of stroke, staff were able to deliver the LSCTC, and most patients were discharged to a permanent place of residence. Stroke units were randomly assigned to either LSCTC or usual care (control group), stratified by geographical region and quality of care, and using blocks of size 2. Patients with a diagnosis of stroke, likely to return home with residual disability and with a caregiver providing support were eligible. The primary outcome for patients was self-reported extended activities of daily living at 6 months, measured with the Nottingham Extended Activities of Daily Living (NEADL) scale. The primary outcome for caregivers was self-reported burden at 6 months, measured with the caregivers burden scale (CBS). We combined patient and caregiver costs with primary outcomes and quality-adjusted life-years (QALYs) to assess cost-effectiveness. This trial is registered with controlled-trials.com, number ISRCTN 49208824.

Findings: We assessed 49 stroke units for eligibility, of which 36 were randomly assigned to either the intervention group or the control group. Between Feb 27, 2008, and Feb 9, 2010, 928 patient and caregiver dyads were registered, of which 450 were in the intervention group, and 478 in the control group. Patients' self-reported extended activities of daily living did not differ between groups at 6 months (adjusted mean NEADL score 27·4 in the intervention group versus 27·6 in the control group, difference –0·2 points [95% CI –3·0 to 2·5], p value=0·866, ICC=0·027). The caregiver burden scale did not differ between groups either (adjusted mean CBS 45·5 in the intervention group versus 45·0 in the control group, difference 0·5 points [95% CI –1·7 to 2·7], p value=0·660, ICC=0·013). Patient and caregiver costs were similar in both groups (length of the initial stroke admission and associated costs were £13 127 for the intervention group and £12 471 for the control group; adjusted mean difference £1243 [95% CI –1533 to 4019]; p value=0·380). Probabilities of cost-effectiveness based on QALYs were low.

Interpretation: In a large scale, robust evaluation, results from this study have shown no differences between the LSCTC and usual care on any of the assessed outcomes. The immediate period after stroke might not be the ideal time to deliver structured caregiver training.

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Care giving offspring to aging parents:: How it affects their marital relations, parenthood and mental health

The study examined the effect of direct and indirect stresses on the mental health of offspring caring for an aging parent. The study is based on Pearlin, Lieberman, Menaghan, and Mullan's (1981) Stress Development Model. The research examined 345 subjects, men and women aged 40-59 who filled a questionnaire sent by post within their workplace. The research findings show that the various stresses of the caregiver role are mutually connected and have a significant positive effect on the mental health of caregiving offspring. Another finding shows that the extended family support variable acts as a buffer on the caregiving burden on the adult child.

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Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

Background and objectives: Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Methods: A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.

Results: Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.

Conclusions: This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

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Valuing Carers 2011 - Calculating the value of carers' support

This paper updates the estimate of the value of carers’ support published by Carers UK in 2007 in Valuing carers – calculating the value of carers’ support.

It estimates the economic value of the contribution made by carers in the UK as a remarkable £119 billion per year – considerably more than the annual cost of all aspects of the NHS.

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Supporting carers of people diagnosed with schizophrenia: evaluating change in nursing practice following training

BACKGROUND: United Kingdom legislation and clinical standards for schizophrenia challenge nurses to re-examine the support that they provide to carers. Nurses are in a key position to provide this support but may lack the necessary skills to do so. The training programme evaluated in the present study aimed to address this problem.

STUDY AIM: To evaluate change in clinical practice brought about by post-registration training for mental health nurses in supporting carers of people diagnosed with schizophrenia.

DESIGN/METHODS: The study was undertaken in collaboration between the Universities of Dundee and Glasgow, and Tayside National Health Service (NHS) Trust (Scotland). Respondents were nine nurses who completed training and then delivered a planned programme of support to carers. Data on nursing practice were gathered through semi-structured interviews with nurses before training and after providing support. Following the support intervention, carers also commented on the nurses' practice.

FINDINGS: Eight of the nine nurses reported changes in practice in five key areas: They built collaborative relationships with carers, developed a carer focused approach to their practice, acknowledged and supported the carer role, and made progress in identifying carer needs and accessing resources to meet these needs. Nurses experienced difficulties supporting carers who had mental health problems or previous negative experiences of services. Those who lacked community experience also found it difficult to adjust to working in a community setting. Although clinical supervision helped them to work through these difficulties, they remain largely unresolved.

CONCLUSIONS: Findings from this study indicate that appropriate training may enable nurses to improve the support provided to carers of people diagnosed with schizophrenia. This study represents an important stage in determining the nature of support offered to carers by nurses. While developed to help nurses to meet clinical standards set for schizophrenia in the UK, findings may have clinical significance for nurses in other countries.

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Effects of stroke on informal carers

Informal carers have a pivotal role in caring for patients who have had a stroke. Research has shown that informal carers have unmet information, psychological and social needs. There is a lack of research about how informal carers in Northern Ireland manage the role of caring for a patient who has experienced stroke, and what kind of support they need and receive. This literature review explores the experiences of informal carers providing stroke care in the home. The issues highlighted in the article are relevant worldwide, because the incidence of stroke is increasing in developed and developing countries.

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The caregiving journey for family members of relatives with cancer: how do they cope?

Family caregivers need adequate support from healthcare professionals to complete the demands associated with caregiving with minimal impact on their own health and well-being. An optimal balance of provision of care between family and support services has not been achieved; therefore, this literature review investigates how family caregivers endure and cope with the challenges of caring for an adult relative with cancer. This review considered the characteristics of caregivers and their functioning, the external and internal supports that help them cope, the ongoing challenges as they journey along the caregiving trajectory, the personal costs of caregiving, and how caregivers cope with supporting their family members through to the end of their journeys. The literature provides an abundance of research on the numerous challenges encountered by families living with cancer; however, little research has been conducted on the coping strategies used by family caregivers at specific stages along the illness trajectory that either optimize or hinder personal recovery. Even less information is available on interventions nurses can introduce to ease the caregiving burden. Improving nurses' understanding of the stressors and unmet needs associated with caregiving is fundamental to the development of effective family-focused clinical interventions.

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A systematic review of networked technologies supporting carers of people with dementia

We conducted a systematic review of the effectiveness of networked ICT interventions in supporting carers of people with dementia. Five bibliographic databases were searched and a total of 1,456 abstracts were identified as potentially relevant. From these we identified 15 papers describing five interventions: ComputerLink, AlzOnline, Caring for Others and two studies from the REACH project (TLC and CTIS). The interventions reviewed were multifaceted with elements of networked peer support. Outcomes were inconsistent but suggested that the interventions had moderate effects on improving carer stress and depression. Treatment effects were found to vary with care-giver characteristics such as ethnic groups, formal support and baseline burden. Further evaluation is needed in robust trials with good follow-up. 

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New deal for carers: Equalities Task Force report

The Taskforce feels strongly that the recognition of carers role and contribution is a priority and essential to achieving equality for carers, and this is reflected in the recommendations. The group considered two potential approaches to strengthening this; extending protection to carers under legislation. This would not only provide an important underpinning to the other recommendations but also have a real and lasting impact for carers in the longer term. It would have two main positive effects; prevent discrimination against carers, which continues despite current legislation and it would respond directly to the lack of recognition which Carers UK research indicates is the top concern for carers. These issues are particularly relevant now due to both the Discrimination Law Review and the Coleman case currently before the European Court of Justice. These provide an ideal opportunity to make a bold commitment to carers rights. Second, to promote sector led improvement through the dissemination of good practice and peer support, with mechanisms to challenge poor performance where it exists. 

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The support of parents in old age by those born during 1945-1954 : a European perspective

In 2004 in Europe, more than two-thirds of those born during 1945–54 had a parent or parent-in-law alive, and the rates of co-residence with their ascendants ranged from less than four per cent in Sweden, Denmark and The Netherlands, to between 17 and 24 per cent in Italy, Spain and Greece. The proportions that had provided practical help to their parents during the previous 12 months had a north-south gradient, from approximately one-in-three in the northern countries to 15 per cent or less in the southern countries. In contrast, the proportions of the helpers that provided regular and almost daily help had an inverse pattern, being low in Sweden and Denmark and much higher in the south. Some of these differences may be attributable to variations among the countries in the interpretation of ‘help’. Help to elderly parents tends to be most associated with the gender of givers and receivers, the living arrangements, geographical proximity and needs of the parents, and the availability of adult children who can help. There is little evidence of a specific ‘baby-boomer generation’ effect on the probability of giving help.

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Informal care and labour force participation among middle-aged women in Spain

Informal care is today the form of support most commonly used in Spain by those who need help in order to carry out basic daily activities. The potential labour opportunity costs incurred by Spanish informal carers have not as yet been quantified. In this paper we use the Spanish subsample of the European Community Household Panel (1994–2001) to estimate an econometric model which we exploit to examine the effects of various types of informal care on labour market outcomes. Our results reveal the existence of non-negligible costs in terms of foregone employment for carers who live with the dependent person and/or provide more than 28 h of care/week. We also find that providing care for more than a year has negative effects on employment. Nonetheless, there seems to be no contemporaneous employment effects associated to either starting or ending an episode of care.

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Family Caregivers, Their Needs, and Home-based Palliative Cancer Services

The focus of this four-stage, longitudinal, qualitative, and quantitative study was to explore, from the caregivers perspective, the impact of caring for a person with a diagnosis of terminal cancer, in order to improve the planning and coordination of home-based hospice services in Australia. Caregivers identified five primary-care needs relating to lack of information and ineffective communication with health professionals, inadequate emotional support, the need for assistance with physical care and household tasks, support for caregiver health and social wellbeing, and financial issues. The extent to which current service provision met each of these needs varied. The findings of this study suggest that if palliative care is to be shifted to the home environment, improvement in services concerned with providing support for family caregivers is essential if existing guidelines for palliative care provision are to be met.

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Principles and standards of citizen leadership by the Changing Lives user and carer forum including What is citizen leadership? a report by the user and carer panel of the 21st century social work review

The Scottish Government established the User and Carer Forum upon publication of Changing Lives, in order to provide an opportunity for service users and carers to directly influence and shape the development and implementation of the Changing Lives agenda. The Forum was particularly asked to follow up on the idea of Citizen Leadership and has developed a set of principles (with suggested standards and indicators to help demonstrate how these can apply) by which the leadership contribution of those who use services can be guided and supported. The Forum is made up of members from the User and Carer Panel that worked on the Review and new members from a wide range of backgrounds and experiences. Citizen Leadership is an activity that happens when citizens have power and influence and responsibility to make decisions. Citizen leadership happens when individuals have some control over their own services. It also happens when citizens take action for the benefit of other citizens.

Original document (pdf) on Scottish Government website.

Care and support: what's changing?

Information on what the changes introduced by the Care Act will mean for carers and the cared for. The resource provides an explanation of care and support in England and outlines key elements of the act, including: deferred payment agreements; needs and eligibility; support for carers; and cap on care costs.

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Carer participation: training for people with intellectual disabilities in a Chinese society

People with intellectual disabilities require training to improve independence, and carers are important partners in the process. Studies show that carers are able to motivate family members with intellectual disabilities to participate in training. In addition, family members may serve as cotrainers. To increase carers' participation, it is necessary to empower them with training techniques and develop strategies to relieve their stress. This article aims to explore the effects of carer support to enhance training quality of daily living skills for their family member with intellectual disabilities, through the use of care case studies, in the context of families living in Hong Kong. A model of multiple case studies is adopted. Three cases are analyzed to illustrate various modes of carer participation.

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Putting stroke outcomes into context - Assessment of variations in the processes of care

Background: Comparative studies of patient outcomes consistently find that variations cannot be explained by case mix alone, suggesting that differences in the process of care may contribute to variations in outcome. We sought to describe local medical and social services available to patients participating in a multinational study of stroke services and outcomes. Methods: Key informant interviews were conducted with service providers in participating centres. A semi-structured interview schedule was used to describe local models of clinical care, types of community care available and the role of the family in caring for patients. Results: Data were provided by 15 centres in 14 European states. Models of clinical care include multidisciplinary and ‘geographical’ stroke units, dedicated stroke beds, neurologist-led care and physician-led care. Nurse to patient ratios range from 1:3 to 1:15. Three patterns of rehabilitation provision emerge and estimates of acute physiotherapy range from 30 to 180 min/day. In almost all centres the patient's family is expected to assume responsibility for care after discharge but there are wide variations in the levels of community support available to informal carers. Conclusions: The extent to which the structures and processes of care vary across a sample of European centres highlights the need for caution in assuming that studies which control for patient characteristics thereby control for all relevant variables. There are also implications for the implementation of international gold standards of care. Future analyses will relate our findings to 3 month and 1 year outcomes and assess their impact.

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Care-giving as a Canadian-Vietnamese tradition: 'it's like eating, you just do it'

The objective of this study was to examine how Vietnamese family caregivers (FCGs) perceive, manage and experience end-of-life care-giving for seriously ill family members. Using an instrumental case study design, this longitudinal qualitative research employed the use of cultural brokers/language interpreters to help ensure that the research was conducted in a culturally-appropriate manner. Participants (n = 18) discussed their experiences of care-giving within the context of a traditional cultural framework, which was found to influence their motivations and approaches to care-giving, as well as their propensities towards the use of various supports and services. The study was carried out in southern Ontario, Canada, and participants were providing home-based care-giving in the community. Data were collected throughout 2010 and 2011. The ways in which care-giving was perceived and expressed are reflected in three themes: (i) Natural: identity and care work; (ii) Intentional: whole-person care; and (iii) Intensive: standards, struggle and the context of care. This research confirms the need for culturally-appropriate services and supports while illustrating that Vietnamese FCGs not only value, but are also likely to use healthcare and social services if they are language-accessible, built on trust and demonstrate respect for their values as individuals, regardless of culture.

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Aging together: sibling carers of adults with intellectual and developmental disabilities

Family care provision is the norm for adults with intellectual and developmental disabilities (I/DD), even as they and their support networks grow older. As families age together, the role of primary carer frequently transitions from the parent to a sibling, as aging parents die or become too frail to provide continued support. The purpose of this paper is to explore the transition in care from the perspective of a sibling who has replaced parents as the primary carer for an individual aging with I/DD. Data are drawn from semi-structured, in-depth interviews with a sample of adults over age 40, living in the United States, and caring for a sibling with I/DD (n = 15). Data were analyzed using a constant comparative qualitative approach. Results reveal themes impacting the adjustment to the role of primary carer, the extent to which aging transformed the content of care needs, the importance of planning, and the availability of supplementary support. Findings from this study underscore the need to develop long-term services and supports as well as educational resources that accommodate this population of carers as they age together with their sibling with I/DD.

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Improving caregiving competence, stress coping, and mental well-being in informal dementia carers

AIM: To study the effectiveness of Reitman Centre “Coaching, Advocacy, Respite, Education, Relationship, and Simulation” (CARERS) program, which uses problem-solving techniques and simulation to train informal dementia carers.

METHODS: Seventy-three carers for family members with dementia were included in the pilot study. Pre- and post-intervention data were collected from carers using validated measures of depression, mastery, role captivity and overload, caregiving competence and burden, and coping styles. To assess program effectiveness, mean differences for these measures were calculated. One-way ANOVA was used to determine if change in scores is dependent on the respective baseline scores. Clinical effects for measures were expressed as Cohen’s D values.

RESULTS: Data from 73 carers were analyzed. The majority of these participants were female (79.5%). A total of 69.9% were spouses and 30.1% were children of the care recipient. Participants had an overall mean age of 68.34 ± 12.01 years. About 31.5% of participating carers had a past history of psychiatric illness (e.g., depression), and 34.2% sustained strained relationships with their respective care recipients. Results from carers demonstrated improvement in carers’ self-perception of competence (1.26 ± 1.92, P < 0.0001), and significant reduction in emotion-focused coping (measured by the Coping Inventory of Stressful Situations, -2.37 ± 6.73, P < 0.01), Geriatric Depression scale (-0.67 ± 2.63, P < 0.05) and Pearlin’s overload scale (-0.55 ± 2.07, P < 0.05), upon completion of the Program. Secondly, it was found that carers with more compromised baseline scores benefited most from the intervention, as they experienced statistically significant improvement in the following constructs: competence, stress-coping style (less emotion-oriented), sense of mastery, burden, overload.

CONCLUSION: Study results supported the effectiveness of the CARERS Program in improving caregiving competence, stress coping ability and mental well-being in carers caring for family members with dementia.

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Supporting carers: an action guide for general practitioners and their teams

This resource is a collaboration between the Royal College of General Practitioners (RCGP) and The Princess Royal Trust for Carers. It has been developed with the help of Sheffield University and over twenty GP practices who have piloted and evaluated some of the resources

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In-patient psychiatric care for individuals with intellectual disabilities: the service users' and carers' perspectives

Background: Little is known about the experiences of individuals with intellectual disabilities and additional mental health problems who are admitted for inpatient psychiatric care. In the UK such care is delivered in both generic psychiatric and specialised treatment settings.

Aims: The present study explored service users' and carers' views on in-patient psychiatric treatment received across these two settings.

Method: Thirty service users and wherever possible their main carers were interviewed about their views on the psychiatric admission, treatment and discharge process. Data was gathered during semi-structured, one-to-one interviews.

Results: Both service users and carers identified positive and negative aspects of the psychiatric admission. For service users lack of control and information, support from staff, or conversely its absence emerged as key themes. For carers concerns about service users' vulnerability, negative staff attitudes and opportunities for involvement emerged as key themes. The accounts of both groups regarding generic psychiatric settings were predominantly negative. In contrast, specialized settings were frequently described as providing a pleasant environment, supportive and caring staff, good information sharing and satisfactory discharge arrangements.

Conclusions: Important areas for service improvements are highlighted. Implications in particular for generic settings are considered.

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Informal care and home-based palliative care: the health-related quality of life of carers

Health is an important factor in the capacity of family and friends (informal carers) to continue providing care for palliative care patients at home. This study investigates associations between the health-related quality of life (HRQOL) of current informal carers and characteristics of the carers and their caregiving situation, in a sample of Australian carers of palliative care patients. The cross-sectional study used the Short Form-36 Health Survey to measure HRQOL. It found carers to have better physical health and worse mental health than the general population. Of 178 carers, 35% reported their health to be worse than it was one year ago. Multiple regression analyses found that the HRQOL of carers whose health had deteriorated in the previous year was associated with the patient's care needs but not the carer's time input, unlike the carers reporting stable health. Clinicians caring for palliative care patients should be alert to the potential health impairments of informal carers and ensure that they are adequately supported in their caregiving role and have access to appropriate treatment and preventive health care.

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New networked technologies and carers of people with dementia: an interview study

Dementia is one of the greatest contemporary health and social care challenges, and novel approaches to the care of its sufferers are needed. New information and communication technologies (ICT) have the potential to assist those caring for people with dementia, through access to networked information and support, tracking and surveillance. This article reports the views about such new technologies of 34 carers of people with dementia. We also held a group discussion with nine carers for respondent validation. The carers' actual use of new ICT was limited, although they thought a gradual increase in the use of networked technology in dementia care was inevitable but would bypass some carers who saw themselves as too old. Carers expressed a general enthusiasm for the benefits of ICT, but usually not for themselves, and they identified several key challenges including: establishing an appropriate balance between, on the one hand, privacy and autonomy and, on the other: maximising safety; establishing responsibility for and ownership of the equipment and who bears the costs; the possibility that technological help would mean a loss of valued personal contact; and the possibility that technology would substitute for existing services rather than be complementary. For carers and dementia sufferers to be supported, the expanding use of these technologies should be accompanied by intensive debate of the associated issues.

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Draft national minimum eligibility threshold for adult care and support: a discussion document

The White Paper 'Caring for our future: reforming care and support' sets out plans to develop and test potential new assessment and eligibility models. From April 2015, subject to the passage of the Care Bill, a new national minimum threshold for eligibility will be specified, which will set a guarantee of the minimum needs which local authorities must meet in every area. This will be introduced through a provision in clause 13 of the Bill, which requires Secretary of State to make regulations to set out the “eligibility criteria” for all local authorities. The Draft Care and Support (Eligibility Criteria) Regulations set out this minimum threshold on what needs are eligible for care and support in local authorities across England, for people needing care and carers respectively. These are the needs which must be met, provided the person needing care is ordinarily resident in the local authority area, and the person needing care or the carer as appropriate wants the local authority to meet them. 

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Caring for people with eating disorders: factors associated with psychological distress and negative caregiving appraisals in carers of people with eating disorders

OBJECTIVES: Carers of people with eating disorders (ED) have high levels of distress, but little is known about the contributing factors. The aim of this study was to examine predictors of carers' distress and caregiving appraisals using a model of caregiving adapted from the previous literature.

DESIGN: A cross-sectional design was used.

METHODS: A sample of 115 individuals currently caring for someone with an ED participated in the study. Carers completed self-report assessments of psychological distress (GHQ-12; Goldberg & Williams, 1988), experience of caregiving (Szmukler et al., 1996), illness representations (IPQ-SCV; Barrowclough, Lobban, Hatton, & Quinn, 2001) and caregiving needs (CaNAM; Haigh & Treasure, 2003). Simple and multiple hierarchical regressions were conducted.

RESULTS: Approximately 36% (39/109) of carers had scores on the GHQ which indicated mental health difficulties, with 17% (19/109) experiencing high psychological distress. A negative experience of caregiving was associated with carers' distress. The dependency of the individual with the ED and stigma associated with the illness were most highly predictive of carers' distress. Shorter illness duration, higher levels of needs (lower levels of support) and perceptions of high illness consequences contributed to greater negative caregiving appraisals. The belief that the illness was attributable to the sufferers' personality was related to fewer positive appraisals.

CONCLUSIONS: Adjusting to the impact of a family member experiencing an ED is problematic, as suggested by the relationship between shorter illness duration and greater negative appraisals of caregiving. Interventions to help reduce dependency and alleviate stigma may help to decrease carers' distress.

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'Quite an awkward situation to be in': perceptions of patients, carers and health and social care professionals of the supportive cancer care in British military personnel stationed in Germany

Goals of work: This paper reports findings from a study which identified the nature and volume of supportive care received by British military services personnel and their dependents who experience cancer and are based in Germany. The objectives were to (1) identify any gaps in the provision of supportive care, (2) determine the potential for additional supportive care services (local or remote), and (3) identify any educational or development issues for DMWS personnel.

Materials and methods: Interviews and focus groups were conducted with people with cancer (n = 7), informal carers (n = 6), British health care professionals employed by British Forces in Germany (n = 8), German health care professionals (n = 3), senior military personnel (n = 6) and army support personnel (n = 5). Analysis of the data was thematic and focused on accounts of care related to core issue identified in the UK’s National Institute of Health and Clinical Excellence (NICE) guidelines (24).

Main results: The paper explores the difficulties which British military personnel experience in their cancer care. The shortfalls in best practice are discussed in the framework of NICE guidelines focusing on communication, information, psychosocial care and coordination of care/inter-agency working. Significant gaps in the supportive care service provision are apparent

Conclusions: The limited assessment and discussion of patients’ supportive care needs suggests key areas for service improvement for providers both within the British Military in Germany, and in the services provided by German organisations. These findings highlight issues that should be considered by those providing supportive care for marginalised patient groups, such as patients and carers from different cultures.

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Carers

A new initiative to support carers in the United States mirrors the national carers strategy in the UK. But there are important differences, such as the role of insurance in the provision of long term care. Looks at some recent research studies, in particular a study to understand how long-term care insurance for disabled older people can affect the lives of their working care givers.

What are the factors that facilitate or hinder resilience in older spousal dementia carers? a qualitative study

Objectives: Much is known about the factors making caring for a spouse with dementia burdensome. However, relatively little is known about factors that help some spouses become resilient. We define resilience as ‘the process of negotiating, managing and adapting to significant sources of stress or trauma’. We aimed to assess whether spousal dementia carers can achieve resilience and to highlight which assets and resources they draw on to facilitate or hinder resilience, using an ecological framework .

Method:Twenty in-depth qualitative interviews with spousal carers from two carer support groups and a care home in North West England.

Results: Eight participants were resilient and 12 were not. A resilient carer was characterised as someone who stays positive and actively maintained their relationship and loved one's former self. Resilient carers were knowledgeable and well supported by family but especially friends, with whom they shared this knowledge. They were more actively engaged with services such as respite care.

Conclusion: There is a need to move towards more ecological models of resilience. We propose that access to assets and resources is not always sufficient to facilitate resilience. Implications of these findings are discussed.

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Providing information for family carers of hospital patients experiencing dementia

Family carers of people with dementia may take on this role without understanding how it will evolve or how to obtain support. Hospitalisation of the person with dementia can not only compound carers’ concerns, but also provides an opportunity for their needs to be addressed. This project involved preparing hospital based nurses, so they could initiate a dialogue with family carers of patients diagnosed with dementia, developing a protocol to guide the nurses as they provided carers with a dementia information booklet, implementing this protocol during a 12-week trial period, and obtaining feedback from the nurses using a questionnaire. At least 21 booklets were distributed; 16 nurses provided feedback. Nurses viewed the practice change positively. Recommendations are to engage ward based champions to embed this strategy into nursing practice, keep the staff informed, and ensure that the booklet is kept in a location visible to the staff.

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Group support during caring and post-caring: the role of carers groups

This article discusses the findings about the role of face-to-face carers groups which emerged from a qualitative, interpretive study of 37 former carers' experiences in the UK. The study was informed by grounded theory and semi-structured in-depth interviews were used as the main method of data collection. The advantages and disadvantages of carers groups during caring and post-caring that were identified are presented. These include the nature of the support they provided for their members, their limitations and ways in which they can be developed in order to meet the needs of carers and former carers. The concepts of social integration and social support are used to supplement the interviewees' explanations of the beneficial effects of carers groups. Following the discussions, suggestions are made about further research into increasing the effectiveness of carers groups' in meeting the needs of those who are caring and their previously unrecognized role in meeting post-caring needs.

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Asian carers' experiences of medical and social care: the case of cerebral palsy

This paper discusses the experience of South Asian carers of a person with cerebral palsy. Previous research in this area has failed to explore carers' perceptions of causation or their views on the quality of service support. Qualitative interviews were carried out with twenty carers in two localities in the north of England with the aim of providing in‐depth contextualized data on their experiences over time, their attitudes towards cerebral palsy and their interactions with service provision. Results show that parents' views on causation differ markedly from explanations based on a medical, genetic model of cause. Parental attitudes towards cerebral palsy are shown to be influenced both by interactions with service professionals and by parents' ability to manage their situation. The absence of adequate material and emotional resources may foster a negative construction of disability by parents that, in turn, has detrimental effects on the individual with cerebral palsy. Parents' religious beliefs can act as a source of emotional support that helps them develop a constructive perspective on disability and deal with future uncertainty. We conclude that developments in service provision need to build on the perspectives of South Asian individuals and communities to respond effectively to their needs.

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Schools recognised for young carer support in new national awards

The article discusses the British Young Carers in School program which is designed to provide information, staff training, and other resources to schools to help them improve the support which they provide to students who have caregiving responsibilities. It notes the program is led by the nonprofit groups Carers Trust and The Children's Society and cites an award under the program received by Applemore College secondary school, Hampshire, England.

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Shared care in Sheffield

Reports on a support scheme in Sheffield for family carers over the age of 70, who care for a person with learning difficulties. The scheme won the carers category at this year's Community Care awards.

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Case management in primary palliative care is associated more strongly with organisational than with patient characteristics: results from a cross-sectional prospective study

Background: Case managers have been introduced in Dutch primary palliative care; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner and home care nurses. This study aims to describe support and investigate what characteristics of patients and the organizational setting are related to the number of contacts and to the number of times topics are discussed between the case manager and patients and/or informal carers.

Methods: Prospective study following cancer patients (n = 662) receiving support from a palliative care case manager in Dutch primary care, using registration forms filled out by the case manager after contact with the patient and/or informal carer. In backward linear regression, the association was studied between patient or organizational characteristics and the number of contacts and the number of times conversation topics were discussed.

Results: Organizational characteristics add more to explained variability in data than patient characteristics. Case managers provide support in a flexible manner with regard to the number, mode, persons present, and duration of contacts. Support covered all domains of palliative care, with most attention given to physical complaints, life expectancy and psychological aspects.

Conclusions: Support offered by the case managers is prompted by characteristics of the organization for which they work. This is contradictory to the idea of patient centered care highly valued in palliative care.

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Nurses' Perceptions of Their Relationships with Informal Carers in Institutional Respite Care for Older People

The purpose of this study was to describe nurses' experiences of their collaboration and relationships with family members in institutional respite care for the elderly. The family has a particularly important role in respite care, which is an extension of care provided at home. However no published studies were found on this subject. The data were collected through qualitative interviews (N=22). Content analysis of the nurses’ descriptions of their collaboration with family members yielded four main categories as follows: (1) conscious ignoring, (2) attempting to understand the family’s situation, (3) hinting at private family matters, and (4) being a friend. The results lend support to earlier findings which emphasize the complexity of relationships between nurses and family carers. A novel finding here is that these relationships may also develop into friendships. Greater emphasis must be placed on primary nursing so that the nurse and informal carer can build up a genuine relationship of trust. If periods of respite care are to help older people and their families to manage independently, it is imperative that nurses have the opportunity to visit their patients at home.

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Supporting family carers providing end-of-life home care: a qualitative study on the impact of a hospice at home service

Aims and objectives: To explore bereaved family carers' perceptions and experiences of a hospice at home service.

Background: The increasing demand for the development of home-based end-of-life services is not confined to the western world; such services are also emerging in resource-poor countries where palliative care services are developing with limited inpatient facilities. Despite this growing trend, studies show a variety of interrelated factors, with an emphasis on the availability of informal carers and their ability to cope, which can influence whether terminally ill patients actually remain at home. A hospice at home service was developed to meet patients' and families' needs by providing individually tailored resources.

Design: A qualitative study.

Methods: Data were collected by semi-structured, digitally recorded interviews from 20 family carers who had experienced the service. Interviews were transcribed verbatim and a thematic approach adopted for analysis.

Results: All participants reported a personal positive impact of the service. Family carers commented the service provided a valued presence, they felt in good hands and importantly it helped in supporting normal life.

Conclusions: The impact of an individualised, targeted, hospice at home service using dedicated, palliative care trained, staff, is perceived positively by family carers and importantly, supportive of those with additional caring or employment commitments.

Relevance to clinical practice: The emergence of hospice at home services has resulted in more options for patients and their families, when the increased amount of care a family member has to provide in these circumstances needs to be adequately supported, with the provision of a flexible service tailored to individual needs and delivered by appropriately trained staff.

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Working family carers in Portugal: between the duty and the burden of caring for old vulnerable people

This paper intends to reflect on some of the predominant traits of caring for older vulnerable people in Portugal, where the most common care model is a mix of informal home-based provision and support from the public and private sectors. We shall address some issues concerning the risks and limits of informal caretaking of older dependent people based on a case study of a woman who has to fulfil multiple roles, pushing her to the limit of her ability to cope. Evidence indicates that solutions to the challenges of caring for an ageing population, especially those in a vulnerable condition, require a consideration of material, social, cultural, and psychological measures. On the basis of the nature of the links between these areas, the quality of the care provided and the consequences for the working family carers, we can define standards of caring solutions for older people and hence derive policies for preventive and optimized interventions. Our final aim is to emphasize the importance of palliative care settings to improve the quality of life and minimize the suffering of both older people and their carers.

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Drawing the line: the boundaries of volunteering in the community care of older people

Volunteers can play important roles in the provision of support and care to frail or confused older people living in their own homes. There are conflicting expectations as to what these roles should be since there are unclear boundaries with those of paid care and with informal care. The present article explores some of these boundaries, drawing on material from a study of 14 volunteer schemes in England. The aim of the research was to explore the roles played by volunteers in the overall care division of labour. The main method used was that of semistructured interviews with organizers and volunteer coordinators of the schemes involved. The findings presented here relate to the limitations on the type of cases taken on, and to the boundaries with professional care, paid manual work and informal care. It concludes that the ways in which these boundaries are established and maintained depends not only on legal and policy constraints at the level of the state, but also on negotiation between organizations and individuals at a local level. The issues raised are of importance not only to research in the area, but to anyone planning similar schemes in the future.

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A Qualitative Investigation of Health Care Professionals', Patients' and Partners' Views on Psychosocial Issues and Related Interventions for Couples Coping with Cancer

Introduction: There is growing evidence that cancer affects couples as an interdependent system and that couple-based psychosocial interventions are efficacious in reducing distress and improving coping skills. However, adoption of a couples-focused approach into cancer care is limited. Previous research has shown that patients and partners hold differing views from health care professionals (HCPs) regarding their psychosocial needs, and HCPs from different disciplines also hold divergent views regarding couples’ psychosocial needs. This study aimed to explore the perspectives of HCPs and couples on the provision of couple-focused psychosocial care in routine cancer services.

Methods: A qualitative study using semi-structured interviews was undertaken with 20 HCPs (medical oncologists, nurses, psycho-oncology professionals) and 20 couples where one member had been diagnosed with cancer (breast, prostate, head/neck, bowel, multiple myeloma). Interviews were analysed using the framework approach.

Results: Three core themes were identified: “How Do Couples Cope with Cancer?” emphasised the positive and negative coping strategies used by couples, and highlighted that partners perceived a lack of engagement by HCPs. “What Is Couple-focused Psychosocial Care for People with Cancer?” described varying perspectives regarding the value of couple-focused psychosocial care and variation in the types of support couples need among HCPs and couples. Whereas most couples did not perceive a need for specialist couple-focused support and interventions, most HCPs felt couple-focused psychosocial care was necessary. “How Can Couple-Focused Psychosocial Care be Improved?” described couples’ view of a need for better provision of information, and the importance of their relationship with oncology clinicians. HCPs identified a lack of confidence in responding to the emotional needs of couples, and barriers to providing psychosocial care, including challenges identifying distress (through screening) and referring distressed individuals/couples for specialist assessment.

Conclusions: The three core themes revealed discrepancies about couple-focused psychosocial care between HCPs and couples, and HCPs from different professional backgrounds, and several barriers to the provision of psychosocial care for couples. Despite HCPs and couples acknowledging that a couple-focused approach to psycho-social support was potentially beneficial, the majority of couples did not feel they needed specific couple-focused interventions. These issues and recommendations for future research are discussed.

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Carers UK: why a social contract is needed

Carers UK is calling for a social contract for care following research it launched last month. Evidence from reports – the Carers, Employment and Services series – shows the need for a radical shake-up to the way we support carers.

Carers have greater risk of ill health and unemployment according to the latest comprehensive research for Carers UK. Sue Yeandle outlines what reforms are needed. 

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Home-based palliative care in Sydney, Australia: the carer's perspective on the provision of informal care

The provision of home-based palliative care requires a substantial unpaid contribution from family and friends (i.e. informal care). The present cross-sectional descriptive study, conducted between September 2003 and April 2004, describes this contribution and the impact it has on those providing informal care. The participants were 82 informal carers of patients registered with two community palliative care services in Sydney, Australia (40% of eligible carers). Carers were interviewed to assess the care recipient's care needs, the care provided by the informal carer and the health status of the carer (using the 36-Item Short Form Health Survey). A number of open-ended questions asked about the impact of providing care and the type of support that carers would find helpful. Most carers reported that care recipients required help with household tasks and many needed assistance with personal activities of daily living, taking medications and organisational tasks. In the majority of cases, the principal carer provided all or most of this help. Although, on average, the physical health of carers was similar to that of the Australian population, their mental health scores were lower. Many carers reported effects on social and family relationships, restrictions on their participation in work and leisure activities, and a range of emotional reactions to their caring situation. The support carers said they would like included information and advice, in-home respite, help with household tasks, and financial support. The present study supports the view that effective support for carers must recognise the pre-existing relationship between carer and recipient, and the differing needs of individual carers.

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Essence of care 2010: benchmarks for communication

The Essence of Care benchmarks are a tool to help healthcare practitioners take a patient-focused and structured approach to sharing and comparing practice. There are 12 benchmarks in total. This document outlines the benchmarks for communication, in order to support people and their carers to experience effective communication. It starts by listing the general indicators that apply to every factor: people’s experience; diversity and individual needs; effectiveness; consent and confidentiality; people, carer and community members’ participation; leadership; education and training; documentation; service delivery; safety; and safeguarding. It then lists the factors specific to communication, together with their supporting indicators. The factors are: interpersonal skills; opportunity for communication; assessment of communication needs; information sharing; resources to aid communication and understanding; identification and assessment of principle carer; empowerment to perform role; co-ordination of care; Empowerment to communicate needs; Valuing people’s and carers’ expertise and contribution; People’s and/or carers’ education needs.

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Perceptions of Giving Support and Depressive Symptoms in Late Life

Purpose of the Study: Research shows that parents benefit psychologically from generativity—giving and caring for the next generation—but older adults’ perceptions on giving support to their children are rarely if ever explored in these studies. The current study examines the association between the support that aging parents give to one of their middle-aged offspring, their perception of this support as rewarding or stressful, and their levels of depressive symptoms.

Design and Methods: The sample draws from The Family Exchanges Study and consisted of 337 older parents (mean age: 76) who were drawn from a larger study of middle-aged adults (i.e., target participants). Older parents reported tangible and nontangible forms of support given to the target middle-aged child and the extent to which they viewed providing such support as stressful and/or rewarding.

Results: We found significant interactions between tangible support and feelings of reward and between nontangible support and feelings of stress in explaining parental depressive symptoms. Parents who found giving support to be highly rewarding had lower levels of depressive symptoms when giving high amounts of tangible support. Conversely, parents who view giving support to be highly stressful had higher levels of depressive symptoms when they gave low amounts of nontangible support.

Implications: Findings suggest older parents’ perceptions of supporting their offspring may condition how generativity affects their mental health.

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Making decisions for people with dementia who lack capacity: qualitative study of family carers in the UK

Objective To identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers.

Design Qualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews.

Setting Community settings in London.

Participants 43 family carers of people with dementia in focus groups and 46 carers who had already made such decisions in individual interviews.

Results Family carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them. They highlighted the difficulties in making proxy decisions, especially against active resistance, and their altered role of patient manager while still a family member. Families devised strategies to gain agreement in order to ensure that the person with dementia retained dignity.

Conclusions The following strategies helped with implementation of decisions: introducing change slowly; organising legal changes for the carer as well as the patient; involving a professional to persuade the patient to accept services; and emphasising that services optimised, not impeded, independence. To access services, carers made patients’ general practice appointments, accompanied them to the surgery, pointed out symptoms, gained permission to receive confidential information, asked for referral to specialist services, and used professionals’ authority to gain patients’ agreement. End of life decisions were particularly difficult. They were helped by knowledge of the person with dementia’s previous views, clear prognostic information, and family support. Information sheets to help carers to overcome barriers to proxy decision making have been developed; their impact in practice has yet to be evaluated.

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Negotiating lay and professional roles in the care of children with complex health care needs

BACKGROUND: Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses).

AIMS OF THE PAPER: To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents.

DESIGN: Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community.

FINDINGS: From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur.

CONCLUSION: This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent-professional relationships that are characterized by conflict rather than partnership.

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Satisfaction with the care-managed support of older people: An empirical analysis

Modernising Social Services requires the use of satisfaction surveys in monitoring some key aspects of quality of provision, including user/carer perceptions and experiences of services and involvement of users/carers in assessment and review. Using data from the study Evaluating Community Care for Elderly People (ECCEP), of physically and/or mentally frail community-based older people in England and Wales receiving community care services, this investigation examines three crucial aspects of user satisfaction. The measures were: initial satisfaction with the assessment process and help provided by social services; also two measures obtained from a six month follow-up, namely satisfaction with service levels and with the experience of social services. Examination of overall satisfaction levels provided only a partial picture, due to their association with both user characteristics and the effect of life satisfaction. This association was therefore examined firstly by considering each characteristic separately and secondly by modelling the presence of each satisfaction measure in terms of those characteristics having a significant effect, using logistic regression. Arthritis, loneliness, problems keeping warm and an inner city location were all characteristics associated with reduced satisfaction, while most resource inputs, including social work involvement, were positively related to satisfaction. General life satisfaction was also associated with increased satisfaction levels. The role of life satisfaction as a predictor was further investigated through examining its dependence on case characteristics. While older users were more frequently satisfied with life, those with greater functional impairment and below average self-perceived health reported lower life satisfaction. Findings from this study highlight the complexity of interpreting satisfaction data and suggest that those responsible for designing and conducting surveys need to be aware of both the potential and pitfalls associated with using them as a means of assessing the quality of social services for older people.

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Informal stroke caregivers' self-appraised problem-solving abilities as a predictor of well-being and perceived social support

Aim.  To describe the relationship between self-appraised problem-solving abilities and psychological distress, burden and perceived social support in informal, family stroke caregivers.

Background.  Previous research suggests that self-appraised problem-solving abilities play a significant role in the well-being of family caregivers of patients with chronic illness. However, little is known about its role in caregivers of stroke survivors.

Design.  Prospective correlational study.

Methods.  One week before discharge, 103 family caregivers of survivors of a first stroke were assessed for their perceived problem-solving abilities, social support, anxiety, depression and physical well-being. At three months postdischarge, 85 of these caregivers (83% retention) were reassessed on the same measures. In addition, their levels of burden and perceived difficulties were also measured.

Results.  Using multiple regression, overall self-appraised problem-solving abilities and its subscale ‘confidence in problem-solving’ at one week before discharge were significant predictors of caregiver perceived social support (R2 = 29%) and perceived physical well-being (R2 = 42%) at three months postdischarge. Other relationships were non-significant.

Conclusions.  Caregivers’ perceived social support and physical well-being were significantly predicted by confidence in problem-solving.

Relevance to clinical practice.  This study is timely given the challenges facing health systems in Hong Kong to effectively manage chronic illness through family-centred care. The significant relationships between caregiver self-appraised problem-solving, perceived social support and well-being suggest that interventions maximising caregiver confidence in problem-solving might be valuable in supporting family caregivers of stroke survivors. Nurses working with families caring for stroke survivors both close to discharge and in the early transition stages back at home may be in an ideal position to offer this support.

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Between elderly parents and adult children : a new look at the intergenerational care provided by the 'sandwich generation'

The ‘sandwich generation’ has been conceptualised as those mid-life adults who simultaneously raise dependent children and care for frail elderly parents. Such a combination of dependants is in fact very unusual, and the more common situation is when adults in late mid-life or early old age have one or more surviving parents and adult but still partly dependent children. It can be hypothesised that for parents in this pivotal position, the demands from adult children and from elderly parents compete, with the result that those who provide help to one are less likely to provide help to the other. An alternative hypothesis, however, is that family solidarity has an important influence but is not universal, so that some pivotal-generation parents engage in intergenerational exchange in both directions, and there is a positive association between helping parents and helping children. To investigate this question, the paper presents an analysis of data from two broadly comparable national surveys, in Great Britain and the United States, on the care provided by women aged 55–69 years to their descendent and ascendent relatives. The results show that around one-third of the women reported providing help to members of both generations, and that around one-fifth provided support to neither. They broadly support the solidarity hypothesis, but provide some evidence that having three or more children is associated with a reduced likelihood of providing help to a parent.

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Caring for a relative with chronic fatigue syndrome : difficulties, cogntion and acceptance over time

The present study explored the difficulties experienced by carers of chronic fatigue syndrome (CFS) sufferers, their cognitions, and their efforts to accept the illness. Semi-structured interviews were conducted with 17 carers to study these issues, retrospectively, over three stages: before the diagnosis of CFS, shortly after the diagnosis, and at present. Surprisingly, the results suggested that carers, several of them absent from home during the day, felt that their lives were only minimally constrained by the illness. Nevertheless, all carers reported specific coping efforts to manage both the illness and their own distress, and indicated that they learned to accept the illness over time. However, acceptance appeared to be a form of resignation rather than a positive appreciation of the illness. In light of the uncertainties surrounding the origin of CFS and carers’ apparent confusion, the results obtained in the present study are significant in that they increase our understanding of CFS carers’ quality of life, their efforts to cope with the illness, and the physical and emotional help they may provide to the sufferer. Such information can be usefully employed in the increasing development of counselling interventions and instrumental support networks that involve both sufferers and their carers.

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Developing services for carers and families of people with mental illness

The aim of this document is to help local mental health services develop support services for carers of people with mental health problems. It contains guidance on developing and sustaining mental health carer support services and also includes a sample job description for carer support workers. The guidance should be read in conjunction with Standard Six (Caring for Carers) of the Mental Health National Service Framework (MHNSF) and guidance on implementation of the Carers and Disabled Children Act 2000.

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'After the stroke': patients' and carers' experiences of healthcare after stroke in Scotland

We report findings on patients with stroke and carers experiences of the healthcare system in Scotland after stroke. These findings emerged from data collected in a primary qualitative study exploring patients with stroke and carers perception of a Functional Electrical Stimulation (FES) Clinic. Rich data emerged in relation to healthcare after stroke as experienced by both patients and carers, highlighting important clinically relevant messages and constituting an important area for dissemination. Thirteen patients with stroke and nine carers consented to participate. Data were collected using face-to-face semi-structured interviews, undertaken in April and May 2007, and analysed using the framework of Interpretative Phenomenological Analysis (IPA). IPA aims to explore in depth the participants lived experiences of a specific phenomenon. An overarching theme of 'After the stroke' was identified. Within this, six sub-themes emerged entitled, (1) 'What is wrong?'; (2) 'Help came quickly'; (3) 'Something is still wrong'; (4) 'In the hospital'; (5) 'I'm taking them home' and (6) 'Back at home'. Interestingly, patients with stroke and carers recalled similar parts of the pathway through the healthcare system after stroke, resulting in the six chronological sub-themes. The data highlighted issues surrounding recognition of stroke symptoms by both participants and professionals; expeditious admission to hospital and stroke unit; consultation during the discharge planning process and access to support and community follow up. Despite the availability of clinical guidelines to direct the management of stroke, this study suggests that the experiences of patients with stroke and carers do not always concur with guideline recommendations. These results highlight that such recommendations do not always transfer into clinical practice. Both clinicians and service managers should consider these issues when delivering care to patients after stroke.

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START (STrAtegies for RelaTives) coping strategy for family carers of adults with dementia: qualitative study of participants’ views about the intervention

Objectives To analyse the experience of individual family carers of people with dementia who received a manual-based coping strategy programme (STrAtegies for RelaTives, START), demonstrated in a randomised-controlled trial to reduce affective symptoms.

Design A qualitative study using self-completed questionnaires exploring the experience of the START intervention. Two researchers transcribed, coded and analysed completed questionnaires thematically.

Setting Three mental health and one neurology dementia clinic in South East England.

Participants Participants were primary family carers of a patient diagnosed with dementia who provided support at least weekly to their relative. We invited those in the treatment group remaining in the START study at 2 years postrandomisation (n=132) to participate. 75 people, comprising a maximum variation sample, responded.

Primary and secondary outcome measures (1) Important aspects of the therapy. (2) Continued use of the intervention after the end of the therapy. (3) Unhelpful aspects of the therapy and suggestions for improvement. (4) Appropriate time for intervention delivery.

Results Carers identified several different components as important: relaxation techniques, education about dementia, strategies to help manage the behaviour of the person with dementia, contact with the therapist and changing unhelpful thoughts. Two-thirds of the participants reported that they continue to use the intervention's techniques at 2-year follow up. Few participants suggested changes to the intervention content, but some wanted more sessions and others wanted the involvement of more family members. Most were happy with receiving the intervention shortly after diagnosis, although some relatives of people with moderate dementia thought it should have been delivered at an earlier stage.

Conclusions Participants’ varied responses about which aspects of START were helpful suggest that a multicomponent intervention is suited to the differing circumstances of dementia carers, providing a range of potentially helpful strategies. The continued use of the strategies 2 years after receiving the intervention could be a mechanism for the intervention remaining effective.

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Self-esteem in carers of frail older people: resentment predicts anxiety and depression

Objectives: Anxiety and depression are major health problems for carers of frail older people. Positive reactions to caregiving have been shown to protect people against anxiety and depression. The aims of this study are to explore specific aspects of self-esteem, termed positive caregiving reactions, and examine its relationship with caregiving anxiety and depressive symptoms.

Method: A cross-sectional study of a cohort of carers (n = 119) of community-living people (≥70 years) identified empirically as frail completed postal questionnaires. Positive caregiver reactions were evaluated using the self-esteem subscale (seven items) of the Caregiver Reaction Assessment (CRA). Anxiety and depressive symptoms were measured using the Hospital Anxiety and Depression Scale.

Results: Anxiety and depressive symptoms were related significantly (p < 0.05) to six of the seven CRA self-esteem items. Caregiving resentment scores were relatively low, mean score (SD) 1.79 (0.91) on a 1–5 scale with higher scores indicating more resentment: yet regression analysis revealed that this factor was the only independent predictor of anxiety and depressive symptoms (r 2 = 0.093, p = 0.044 for anxiety, and r 2 = 0.121, p = 0.041 for depression).

Conclusion: The results of this study indicate that those carers who resent having to care for their frail older relative are susceptible to anxiety and depressive symptoms. This study supports the notion that there is a need for assessment of caregiving reactions in carers of frail older people.

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Scottish Household Survey analytical topic report: characteristics and experiences of unpaid carers in Scotland: research findings

The main findings of research that aimed to provide an indication of which types of carers may be in particular need of support, and examine the demographic characteristics of carers are reported. The report analysed responses to the Scottish Household Survey between 1999 and 2004.

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The relationships between depression and other outcomes of chronic illness caregiving

Background: Many caregivers with chronically ill relatives suffer from depression. However, the relationship of depression to other outcomes of chronic caregiving remains unclear. This study tested a hypothesized model which proposed that hours of care, stressful life events, social support, age and gender would predict caregivers' outcomes through perceived caregiver stress. Depression was expected to mediate the relationship between perceived stress and outcomes of chronic caregiving (physical function, self-esteem, and marital satisfaction).

Methods: The sample for this secondary data analysis consisted of 236 and 271 subjects from the Americans' Changing Lives, Wave 1, 1986, and Wave 2, 1989, data sets. Measures were constructed from the original study. Structural equation modeling was used to test the hypothesized model, and an exploratory structural modeling method, specification search, was used to develop a data-derived model. Cross-validation was used to verify the paths among variables.

Results: Hours of care, age, and gender predicted caregivers' outcomes directly or through perceived caregiver stress (p < .01). Depression mediated the relationship between perceived stress and psychological outcomes and explained 40% and 11% of the variance in self-esteem and marital satisfaction, respectively.

Conclusion: Depression predicted psychological outcomes. Whether depression predicts physical health outcomes needs to be further explored.

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Psychosis and schizophrenia in adults: QS80

This quality standard covers the treatment and management of psychosis and schizophrenia (including related psychotic disorders such as schizoaffective disorder, schizophreniform disorder and delusional disorder) in adults with onset before the age of 60 years in primary, secondary and community care. It does not cover adults with transient psychotic symptoms. The standard sets out key quality statements, providing quality measures for each of them and explaining what they mean for service providers, health and social care practitioners, and commissioners and for patients, service users and carers. The eight statements cover: referral to early intervention in psychosis services; cognitive behavioural therapy; family intervention; treatment with clozapine; supported employment programmes; assessing physical health; promoting healthy eating, physical activity and smoking cessation; carer-focused education and support.

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Combining Work and Care: The Reality of Policy Tensions for Carers

Without the contribution of informal carers of disabled, sick & older people, organised social care in England & Wales could not cope. However, carers can often experience financial hardship, poor health & social isolation, & may find it difficult to combine work & care. The government has developed policies to support carers in their caring role, while also introducing measures to assist carers to work, reflecting the emphasis on paid work as a driving force to reduce poverty. This article draws on empirical evidence to assess the effectiveness of financial & labour market support to encourage carers to work. The evidence sheds light on the tensions underlying current measures to help carers work & care. Tables, References. Adapted from the source document.

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The extent and limits of solidarity in Dutch health care

Solidarity and equal access are twin principles in the Dutch health care system: solidarity between the rich and poor and among people with high and low risks formally guarantees equal access to health care services. However, in the past few years government policies, guided by the ideology of market reform and free choice, have resulted in patterns of inequality that favour privately insured over sickness fund insured. In the meantime, the level of public support for the principles of solidarity and equal access is dropping. A significantly larger portion of the Dutch people now believes that it would be too costly to grant everyone the right to all medical treatments possible. An important reason for the decline of solidarity and equal accessibility is the scarcity of resources. The scarcity of resources and the waiting lists resulting from it will reduce the extent of the benefits package and the access to the care services of the health system. The better-off will have the resources to receive care services that are not part of the basic package. Moreover, the scarcity of resources will affect the readiness in society to provide informal care. Opposed to the compulsory macro solidarity of the health insurance system, informal care is based on a voluntary kind of solidarity in which personal choice plays an important role. Waiting lists and diminishing professional support weaken this readiness, as such support is a necessary condition for informal carers to keep caring for their relatives and friends. Because the informal care system is a necessary supplement to the formal system of care, the lack of help offered by the latter will in the end endanger the solidarity not only in informal care, but in the institutional care system as well.

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Specialist palliative care in dementia

In its latest report on palliative care, the health committee of the House of Commons recorded the Department of Health's admission that the lack of palliative care for patients without cancer was the greatest inequity of all.1 In the United Kingdom, people die in hospices almost solely from cancer, although it accounts for only 25% of all deaths.1 w1 Yet patients dying from dementia have been shown to have healthcare needs comparable to those of cancer patients.2 The palliative care approach provides appropriate control of symptoms, emphasises overall quality of life, takes a holistic approach, involves the patient and the family in decisions, and fosters good supportive communication between all concerned.w2 Hence, it equates to person centred care in dementia.w3 w4 Evidence suggests a palliative care approach in dementia is favoured by formal and informal carers.3 The wishes of patients themselves, however, are hardly known—although preliminary results show high rates of satisfaction [...]

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Recognised, valued and supported: next steps for the carers strategy: response to the call for views

In July 2010, the Department of Health published a call for views on the key priorities, supported wherever possible by evidence of good practice that will have the greatest impact on improving carers’ lives in the next four years. In total, 764 responses were received. This strategy document identifies the actions that the Government will take over the next four years to support its priorities to ensure the best possible outcomes for carers and those they support, including: supporting those with caring responsibilities to identify themselves as carers at an early stage, recognising the value of their contribution and involving them from the outset both in designing local care provision and in planning individual care packages; enabling those with caring responsibilities to fulfil their educational and employment potential; personalised support both for carers and those they support, enabling them to have a family and community life; and supporting carers to remain mentally and physically well.

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Global Perspective on Children's Unpaid Caregiving in the Family

This article provides the first cross-national review and synthesis of available statistical and research evidence from three developed countries, the UK, Australia and the USA, and from sub-Saharan Africa, on children who provide substantial, regular or significant unpaid care to other family members (‘young carers/caregivers’). It uses the issue of young carers as a window on the formulation and delivery of social policy in a global context. The article examines the extent of children’s informal caregiving in each country; how young carers differ from other children; and how children’s caring has been explained in research from both developed and developing countries. The article includes a review of the research, social policy and service developments for young carers in each country. National levels of awareness and policy response are characterized as ‘advanced’, ‘intermediate’, ‘preliminary’ or ‘emerging’. Explanations are provided for variations in national policy and practice drawing on themes from the globalization literature. Global opportunities and constraints to progress, particularly in Africa, are identified. The article suggests that children’s informal caring roles in both developed and developing nations can be located along a ‘caregiving continuum’ and that young carers, globally, have much in common irrespective of where they live or how developed are their national welfare systems. There is a need in all countries for young carers to be recognized, identified, analysed and supported as a distinct group of ‘vulnerable children’.

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Coffee, cakes and mutual support

Norwich: a ‘coffee morning’ initiative aimed to give people with dementia and carers the ordinary social opportunities they were missing. It has succeeded and also brought many further benefits, as Judith Farmer explains

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After a Long-Term Placement: Investigating Educational Achievement, Behaviour, and Transition to Independent Living

This study describes the transition towards independent living of 123 former fostered young people reared for long periods in a private French organisation, SOS Children’s Villages. Three generations of care leavers were analysed through a postal survey and interviews. Their narratives show typical pathways after leaving care. Two-thirds became independent without major problems by the age of 24–25. Analyses have shown that the absence of severe emotional and behavioural disorders, and diplomas obtained, improved their odds of becoming independent. Results suggest a vital need to implement appropriate therapeutic care during placement and to develop care leaver support well beyond the age of 18, in order to help them personally and academically and to ensure their successful transition to adulthood.

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Caring as worrying: the experience of spousal carers

Background.  With the emerging focus on home-based care, there is an increasing demand on spouses to look after their chronically ill partners at home. The theoretical aspects of caring have been much discussed in the literature, but the pragmatic aspects have received less attention. Carer stress has been explored, but little has been written about the meaning of caring to informal carers.

Aim.  The aim of this paper is to report one of the major themes that emerged from a study conducted between 1998 and 1999 to explicate the meaning of caring from the perspective of spousal carers for people with multiple sclerosis in order to shed light on and understand the challenges and demands these carers encountered.

Methodology.  An interpretive phenomenological approach was used to describe spousal carers’ experiences of caring for their partner. Ten spousal carers of people with multiple sclerosis participated. Data were collected through unstructured in-depth interviews and analysed by the method of hermeneutic analysis.

Findings.  This paper presents one of the major themes identified: ‘caring as worrying’. While the meaning of caring that emerged from this theme supports many of the philosophical understandings of caring as discussed in the literature, worrying as a care responsibility provides a further insight. Caring as worrying describes caring as a complex emotional relationship of responsibility in these participants. They worried about their partners, their relationships with their partners and their future. They also worried about their own health, institutional care, and lack of government support.

Conclusion.  Spousal carers’ worries have significant implications for health care professionals. The findings provide insight into the concerns and worries the carers of people with multiple sclerosis face when caring for their chronically ill partners at home.

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End of life care: why supporting family carers is vital

This film looks at the family support service for the families and carers of people who are at the end of their lives at Leicestershire and Rutland Hospice. Social workers work with other staff members to identify families who are in need of support. They can offer a sitting service to enable carers to have some time away from their caring responsibilities and bereavement support and counselling to those who have lost a loved one. In the film Benita, who looks after her mother, talks about the support she receives from a regular sitter. Trevor, a bereaved man, explains how he was initially reluctant to have counselling but came to find it helpful and supportive in dealing with his grief. This film was previously available under the title 'End of life care: supporting the carers', revised in 2014.

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Accessing mental health services for older people in rural South Australia

Mental healthcare for older people is primarily delivered in the community with informal carers, usually family providing much of this. Older people often require input from a range of services across sectors. In Australia, the different funding and governance structures of these services makes for a complex landscape for older people, their families and mental health workers to navigate. As many people now care into later life, the consequences of not getting the required support include the potential for increased carer burden and reduced capacity to fulfil caring tasks. To help address this, partnerships between carers and service providers are recommended. We were interested in exploring rural carers' experiences of accessing care from a range of services for older people with mental health problems with the view to identify what was currently working, as well as what could be changed to improve service access, coordination of care and positive experience of care.

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Palliative Care in chronic Kidney diSease: the PACKS study--quality of life, decision making, costs and impact on carers in people managed without dialysis

Background: The number of patients with advanced chronic kidney disease opting for conservative management rather than dialysis is unknown but likely to be growing as increasingly frail patients with advanced renal disease present to renal services. Conservative kidney management includes ongoing medical input and support from a multidisciplinary team. There is limited evidence concerning patient and carer experience of this choice. This study will explore quality of life, symptoms, cognition, frailty, performance decision making, costs and impact on carers in people with advanced chronic kidney disease managed without dialysis and is funded by the National Institute of Health Research in the UK.

Methods: In this prospective, multicentre, longitudinal study, patients will be recruited in the UK, by renal research nurses, once they have made the decision not to embark on dialysis. Carers will be asked to ‘opt-in’ with consent from patients. The approach includes longitudinal quantitative surveys of quality of life, symptoms, decision making and costs for patients and quality of life and costs for carers, with questionnaires administered quarterly over 12 months. Additionally, the decision making process will be explored via qualitative interviews with renal physicians/clinical nurse specialists.

Discussion: The study is designed to capture patient and carer profiles when conservative kidney management is implemented, and understand trajectories of care-receiving and care-giving with the aim of optimising palliative care for this population. It will explore the interactions that lead to clinical care decisions and the impact of these decisions on informal carers with the intention of improving clinical outcomes for patients and the experiences of care givers.

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Care Act: assessment and eligibility: supported self-assessment

A short guide providing the key points for practitioners to consider when recommending a supported self-assessment for an adult requiring care, or for their carers with support needs under the Care Act 2014. It looks at delivering a supported self-assessment and at how local authorities can ensure that the supported self-assessment is an accurate and complete reflection of an individuals needs and outcomes. It then covers what needs to be done after the supported self-assessment and assurance process has been completed. Lists the benefits and challenges of supported-assessment and provides a check-list of core duties. The guide should be read in conjunction with the Care and Support (Assessment) Regulations 2014 and Chapter 6 of the statutory guidance.

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Coping strategies of families in HIV/AIDS care: some exploratory data from two developmental contexts

Caring for a family member with HIV/AIDS presents multiple challenges that strain a family's physical, economic and emotional resources. Family carers provide physical care and financial support and deal with changes in family relationships and roles, often with little support from outside of the family. Carers in developing countries face even greater challenges, due to lack of medical and support services, poverty and widespread discrimination against those with HIV/AIDS. Little is known about how family carers cope with these challenges or about the ways that development impacts on the process of coping. The current study explored coping strategies used by family carers in two contexts, Kerala, India and Scotland, UK. As part of a larger study, 28 family carers of persons living with HIV/AIDS were interviewed −23 in Kerala and 5 in Scotland. A modified version of the Ways of Coping scale was used to assess coping strategies. Responses were compared on the total number of coping responses used as well as on selected subscales of the WOC. Differences were assessed using the Mann-Whitney U-test. The two cohorts differed significantly in terms of the coping strategies used. The carers from Scotland used a larger number of different coping strategies and scored higher on measures of problem focused coping, positive reappraisal, seeking social support, self-controlling and distancing/detachment. Respondents from Kerala scored higher on a measure of self-blame. Results are discussed in terms of the impact of community resources on coping strategies.

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Support in the community for people with dementia and their carers: a comparative outcome study of specialist mental health service interventions

Background: This study aimed to evaluate outcomes for carers receiving the Admiral Nurse Service, a specialist mental health nursing service for carers of people with dementia. In contrast to many community mental health teams, it works primarily with the caregiver, focuses exclusively on dementia and offers continuing involvement, throughout the caregiving career, including emotional support, provision of information and coordination of practical support.

Method: 104 carers of people with dementia who were interviewed as soon as possible after being referred to a number of Admiral Nurse (AN) services or conventional services in neighbouring areas, and who were re-interviewed eight months later, form the sample (43 AN; 61 comparison).

Results: There were no significant differences between groups, controlling for initial score, on the primary outcome measure at follow-up, the 28-item General Health Questionnaire (GHQ) or its sub-scales, apart from anxiety and insomnia, where outcome was better for the AN group (p = 0.038). Follow-up GHQ scores were associated with ratings of past and current relationship quality. There were no differences in survival in the community between the groups.

Conclusion: Both conventional and AN services are associated with lower distress scores over an eight-month period. Outcome for people with dementia (in terms of institutional placement) is no worse in the AN group, despite the carer focus. Some support is provided for a model of dementia-specialist service which engages with the caregiver and continues involvement for as long as is required, rather than simply carrying out an assessment and referring the person back to social services or primary care. Copyright © 2003 John Wiley & Sons, Ltd.

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Long-term effects of bereavement and caregiver intervention on dementia caregiver depressive symptoms

Purpose: The purpose of this study was to examine the joint effects of bereavement and caregiver intervention on caregiver depressive symptoms. 

Design and Methods: Alzheimer's caregivers from a randomized trial of an enhanced caregiver support intervention versus usual care who had experienced the death of their spouse (n = 254) were repeatedly assessed with the Geriatric Depression Scale prior to and following bereavement. Random effects regression growth curve analyses examined the effects of treatment group and bereavement while controlling for other variables.  

Results: The death of the care recipient led to reductions in depressive symptoms for both caregiving groups. Enhanced support intervention led to lower depressive symptoms compared with controls both before and after bereavement. Post-bereavement group differences were stronger for caregivers of spouses who did not previously experience a nursing home placement. These caregivers maintained these differences for more than 1 year after bereavement. Caregivers who received the enhanced support intervention were more likely to show long-term patterns of fewer depressive symptoms before and after bereavement, suggesting resilience, whereas control caregivers were more likely to show chronic depressive symptoms before and after the death of their spouse. 

Implications:  Caregiver intervention has the potential to alter the long-term course of the caregiving career. Such clinical strategies may also protect caregivers against chronic depressive symptoms that would otherwise persist long after caregiving ends.

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Effects of case management in community aged care on client and carer outcomes : a systematic review of randomized trials and comparative observational studies

Background: Case management has been applied in community aged care to meet frail older people’s holistic needs and promote cost-effectiveness. This systematic review aims to evaluate the effects of case management in community aged care on client and carer outcomes.

Methods: We searched Web of Science, Scopus, Medline, CINAHL (EBSCO) and PsycINFO (CSA) from inception to 2011 July. Inclusion criteria were: no restriction on date, English language, community-dwelling older people and/or carers, case management in community aged care, published in refereed journals, randomized control trials (RCTs) or comparative observational studies, examining client or carer outcomes. Quality of studies was assessed by using such indicators as quality control, randomization, comparability, follow-up rate, dropout, blinding assessors, and intention-to-treat analysis. Two reviewers independently screened potentially relevant studies, extracted information and assessed study quality. A narrative summary of findings were presented.

Results: Ten RCTs and five comparative observational studies were identified. One RCT was rated high quality. Client outcomes included mortality (7 studies), physical or cognitive functioning (6 studies), medical conditions (2 studies), behavioral problems (2 studies) , unmet service needs (3 studies), psychological health or well-being (7 studies) , and satisfaction with care (4 studies), while carer outcomes included stress or burden (6 studies), satisfaction with care (2 studies), psychological health or well-being (5 studies), and social consequences (such as social support and relationships with clients) (2 studies). Five of the seven studies reported that case management in community aged care interventions significantly improved psychological health or well-being in the intervention group, while all the three studies consistently reported fewer unmet service needs among the intervention participants. In contrast, available studies reported mixed results regarding client physical or cognitive functioning and carer stress or burden. There was also limited evidence indicating significant effects of the interventions on the other client and carer outcomes as described above.

Conclusions: Available evidence showed that case management in community aged care can improve client psychological health or well-being and unmet service needs. Future studies should investigate what specific components of case management are crucial in improving clients and their carers’ outcomes.

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Coping with and factors impacting upon the experience of lung cancer in patients and primary carers

There is a paucity of research exploring patients' and their informal carers' experience of coping with and factors impacting on the lung cancer experience. This study aims to explore how patients and their informal carers cope with a diagnosis of lung cancer and describe the key factors that mediate distress in this population in order that they may be better supported in the future. This was a qualitative study employing semi-structured interviews and framework analysis to elicit the experience of 37 patients with lung cancer and 23 primary carers regarding their coping with and factors influencing patient/carer distress. The findings illustrate that participants used both emotional- and problem-focused coping strategies, including accepting the reality of lung cancer, adopting a positive attitude/fighting spirit, denial, avoidance and distraction and information seeking. Maintaining normality was also important. Key factors that mediate the lung cancer experience were also identified including hope, social network, prior experience of cancer and other chronic illnesses, the competing coping strategies of patients and their primary carers, the unpredictable nature of patients' behaviour, changing symptomatology, the perceived attitudes of health professionals and the impact of perceived delays in diagnosis. This study provides important insights into how patients with lung cancer and their primary carers might be better supported.

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BME carers: challenging the myth;"they look after their own"; a good practice guide

This examination of the extent to which carers services in Wales are accessible to Black and Minority Ethnic (BME) carers is located within the overall 'Caring about Carers - a Strategy for Carers In Wales (Implementation Plan)', a project initiated by the Welsh Assembly Government. Supported also by the Welsh Assembly Government, and carried out within the auspices of AWEMA (All Wales Ethnic Minority Association) as a BME Carers project, this study sets out to explore the needs of BME carers in Wales and the extent to which they felt that their needs were being recognised and addressed by mainstream services.

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Who cares?

Research undertaken by the author of this article found that there is a lack of education for community nurses on the role of informal carers. She advocates such education is introduced so that health professionals are better able to support informal carers and suggests that the 'Carers Compass' developed by the Carers Impact Project at the King's Fund could serve as a conceptual guide for teaching purposes. 

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Good practice in European integration: Lessons from the AIDA Project

Introduction: Interest in the integration of health and social care services has grown in recent years amongst all Governments in Europe in light of the increasing numbers of older people and those affected by chronic illnesses. This poster offers a review of the “Album of 10 Good Practices of integration at European level” carried out within the Advancing Integration for a Dignified Ageing (AIDA)- Project (www.projectaida.eu/). This was funded by EU Progress Program with the purpose of highlighting common aspects of effectiveness. Methods: The AIDA Project Consortium developed a criteria for selection of good practices on the basis of most relevant conceptual frameworks on integrated health and social care for older people. 28 initiatives were selected by an Advisory Board (AB) composed by five international experts in the field. The provider/ coordinator of each selected initiative (or a lead academic with an interest in the project) has provided an overview of the project, the legal and social context in which it was set, enablers and barriers, and evaluation of impact. The case-studies were then analysed to highlight success factors and impact on users, service providers and overall health and social care systems. Results:description of the case-studies

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Falling in Parkinson's disease: the impact on informal caregivers

Purpose: The aim of this study was to explore the views and experiences of the informal caregivers of repeat fallers with Parkinson's disease. Method: Individuals were invited to participate in this study if they were the informal caregiver of a person with Parkinson's disease (PD) who had experienced more than one fall in the previous 12 months. Participants were interviewed about their experience of managing falls using a semi-structured interview schedule. Interview data were transcribed and analysed using thematic analysis. Results: Fourteen caregivers (11 female) participated in the study. All were marital partners of a repeat faller with Parkinson's disease. The average age of the participants was 69.9 years (44 - 79). Their partners had had PD for an average of 16.7 years. Six major themes emerged from the analysis of the interview data, four directly related to falls management (the falls; consequences of the falls for the person with PD; caregivers' experiences of falls; consequences of falls for the caregiver). The majority of caregivers were frightened about their spouse falling. They used a number of methods of getting their spouse up from the floor but often injured themselves as a consequence. Caregivers highlighted the high level of care they provided and the social and psychological impact of the condition on them. They received limited help in looking after their spouse and little information about falls or about the disease in general. Conclusion: Caregivers in this study felt unprepared for their role and expressed a need for more support and advice, especially about managing falls.

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Informal carers of cancer patients: what are their unmet psychological needs?

This paper considers the significant unmet psychosocial needs of the informal carers of cancer patients, drawing on data generated in a 3-year UK study (1997–2000) on the psychosocial needs of cancer patients and their main carers. While the needs of the carers of cancer patients are increasingly being recognised in healthcare policy documents, there is relatively little published literature on these needs. A ‘significant unmet need’ is defined here as a need deemed important by the carer, but which has not been met. A descriptive cross-sectional survey of carers was conducted and the responses of 195 carers relating to 48 psychosocial need items were analysed. A subset of these carers (n = 32) were interviewed. Forty-three per cent of carers had significant unmet needs. They were more likely to be those where the relationship to the patient was not that of a partner or spouse, more likely to have other caring responsibilities, and less likely to have friends or relations to call upon for help. Carers with unmet needs were also more likely to be in poor health themselves or to be caring for a patient who had reached the palliation-only phase in their cancer journey. The majority of carers expressed the importance of needs such as having good relationships with healthcare professionals and receiving honest information, but few expressed dissatisfaction with these aspects of need. Items of significant unmet need clustered around aspects of managing daily life, emotions, and also social identity for a sizeable minority of carers. These are the same areas of significant unmet need that concern patients. However, carers have more of these concerns, reflecting their comparative neglect. The paper also considers how these widespread concerns can be addressed.

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Confirmatory Factor Analysis and Invariance Testing of the Young Carer of Parents Inventory (YCOPI)

Objective: Research into youth caregiving in families where a parent experiences a significant medical condition has been hampered by a lack of contextually sensitive measures of the nature and breadth of young caregiving experiences. This study examined the factor structure and measurement invariance of such a measure called the Young Carer of Parents Inventory (YCOPI; Pakenham et al., 2006) using confirmatory factor analysis across 3 groups of youth. The YCOPI has 2 parts: YCOPI-A with 5 factors assessing caregiving experiences that are applicable to all caregiving contexts; YCOPI-B with 4 factors that tap dimensions related to youth caregiving in the context of parent illness. Design: Two samples (ages 9–20 years) were recruited: a community sample of 2,429 youth from which 2 groups were derived (“healthy” family [HF], n = 1760; parental illness [PI], n = 446), and a sample of 130 youth of a parent with multiple sclerosis). Results: With some modification, the YCOPI-A demonstrated a replicable factor structure across 3 groups, and exhibited only partial measurement invariance across the HF and PI groups. The impact of assuming full measurement invariance on latent mean differences appeared small, supporting use of the measure in research and applied settings when estimated using latent factors and controlling for measurement invariance. PI youth reported significantly higher scores than did HF youth on all YCOPI-A subscales. The YCOPI-B requires some modifications, and further development work is recommended. Conclusion: The factor structure that emerged and the addition of new items constitutes the YCOPI-Revised. Findings support the use of the YCOPI-Revised in research and applied settings. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

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Carers legislation: analysis of consultation responses

Report of the independent analysis of the responses to the Carers Legislation public consultation. The consultation sought views on a number of matters for carers and young carers. These included renaming carer assessments 'Carers Support Plans' and removal of the substantial and regular test as eligibility for assessment. Questions were included on support for carers, including information and advice and short breaks; carers/young carers involvement in the planning of services and identification of carer by public services. There were 165 responses from organisations and individuals and 1,422 generated by surveys distributed by two stakeholder organisations submitted to the Scottish Government. This report contains analysis of the views from the consultation responses.

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Caring but not coping

Cases of carers harming or killing those they care for are few. But such rare occurrences should not blind us to the frustrations and isolation that drive many carers to believe they can no longer cope, writes the author. [Journal abstract]

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Enhanced dementia practice for social workers

This online resource is primarily for Newly Qualified Social Workers, and existing social workers, who work in adult care and community care settings in Scotland. The main sections cover: understanding dementia; personal outcomes: valued relationships and community connections; working with carers; health and wellbeing; rights, support and protection; and supportive environments. Each section includes a mixture of personal stories, filmed drama, quotations, key facts, resource material and activities. The resource includes the personal testimonies of members of Scottish Dementia Working Group (SDWG) and National Dementia Carers Action Network (NDCAN). The resource is one a range of resources emerging from 'Promoting Excellence: a framework for all health and social services staff working with people with dementia, their families and carers' in Scotland.

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Screening cancer patients' families with the distress thermometer (DT): a validation study

Although family members of cancer patients are at great risk of experiencing psychological distress, clinical tools to assist with recognizing and intervening with appropriate psychosocial care are sparse. This study reports on the first validation of the distress thermometer (DT) as a screening instrument for symptoms of depression and anxiety in family members of cancer patients. The DT was administered with the Hospital Anxiety and Depression Scale (HADS) in a sample of 321 family members. Receiver operating characteristics (ROC) demonstrated that the DT has good diagnostic utility relative to the HADS (area under the curve= 0.88 relative to the HADS anxiety scale; 0.84 relative to the HADS depression scale, respectively). The ROC curves indicate that using a cut-off of 4/5 maximizes sensitivity (86.2% HADS anxiety scale; 88.2% HADS depression scale) and specificity (71.2% HADS anxiety scale; 67.6% HADS depression scale); however, the alternative lower cut-off of 3/4 increases sensitivity (94.1% for both scales) and hence reduces the risk of missing distressed family members (specificity is 62.9% for HADS anxiety scale; 59.1% for HADS depression scale). The results offer validation of the DT for screening family members of cancer patients and support its use for clinical assessment. Distress screening with DT for family members of cancer patients is a promising and efficient approach to integrating family members in the program of care and provides the first step toward meeting their unmet needs with referral for supportive services. Copyright © 2008 John Wiley & Sons, Ltd.

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Using postal questionnaires to identify carer depression prior to initial patient contact

AIMS AND METHOD To assess whether postal questionnaires, used as a local initiative, were useful in identifying carer depression allowing early support for community-dwelling carers of older adults with mental health needs. The Geriatric Depression Scale and a questionnaire collecting information on the carer’s circumstances were sent to carers of consecutive patients routinely referred to a community mental health team for older adults in south London. Rates of carer depression between postal questionnaire responders and non-responders were compared.

RESULTS The response rate to the postal questionnaires (33%) was similar to that observed in other postal studies; 42% of responders had depression compared with only 4.6% of non-responders.

CLINICAL IMPLICATIONS Pre-contact postal questionnaires may present a simple method of enhancing early detection of carer depression for minimal economic outlay.

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Gender differentials on the health consequences of care-giving to people with AIDS-related illness among older informal carers in two slums in Nairobi, Kenya

Informal caregivers, most often older people, provide valuable care and support for people ill due to AIDS, especially in poor-resource settings with inadequate health care systems and limited access to antiretroviral therapy. The negative health consequences associated with care-giving may vary depending on various factors that act to mediate the extent of the effects on the caregiver. This paper investigates the association between care-giving and poor health among older carers to people living with AIDS, and examines potential within-gender differences in reporting poor health. Data from 1429 men and women aged 50 years or older living in two slum areas of Nairobi are used to compare AIDS-caregivers with other caregivers and non-caregivers based on self-reported health using the World Health Organization disability assessment (WHODAS) score and the presence of a severe health problem. Women AIDS-caregivers reported higher disability scores for mobility and the lowest scores in self-care and life activities domains while men AIDS-caregivers reported higher scores in all domains (except interpersonal interaction) compared with other caregivers and non-caregivers. Multiple regression analysis is used to examine the association of providing care with health outcomes while controlling for other confounders. Consistently across all the health measures, no significant differences were observed between female AIDS-caregivers and female non-caregivers. Male AIDS-caregivers were however significantly more likely to report disability and having a severe health problem compared with male non-caregivers. This finding highlights a gendered variation in outcome and is possibly an indication of the differences in care-giving gender-role expectations and coping strategies. This study highlights the relatively neglected role of older men as caregivers and recommends comprehensive interventions to mitigate the impact of HIV and AIDS on caregivers that embrace men as well as women.

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A question of survival: who cares for carers?

This paper describes a young refugee's experience of unbearable emotional pain, and its impact on the professionals who work with her. It demonstrates the importance of adequate support for professionals working with refugees; and the difficulties for both individuals and organizations in tolerating the limitations of resources.

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Out of the shadows: attending to its message

This article explores the findings from a recent research project conducted by the Mental Health Foundation for the Alzheimer's Society. The project 'Out of the Shadows' draws out important messages for people with dementia and their carers about their preferences for care and support. The research involved a literature review, focus groups and one-to-one interviews. It investigated who they found out they had dementia, the assessment and diagnostic process, and how they coped after diagnosis.

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Informal care and support for carers in Sweden: patterns of service receipt among informal caregivers and care recipients

This study describes and analyses the kinds of support received by different categories of informal carers, and the kinds of help that care recipients receive in addition to that provided by various categories of carers. Data were collected in a Swedish county in 2000, by means of telephone interviews. The net sample consisted of 2,697 individuals 18–84 years old, and the response rate was 61%. The results showed that relatively few carers in any care category received any kind of support aimed directly at them as carers. The most widespread form of support received by providers of personal care was relief services. Those most likely to be receiving care from the public care system were people also receiving personal care from an informal caregiver. Nevertheless, the majority of those receiving personal care from an informal carer did not receive any help from the public care system or from voluntary organizations or for-profit agencies. These results indicate that social policy and social work need to clarify the aims of the services they provide. They also need to take the needs of both caregivers and recipients into account when discussing support systems.

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A participatory action research project evaluating a carers' representation group : Carers Against Stigma

I describe the development of a group in North London that aimed to increase the involvement of carers in the development and monitoring of mental health services across the borough. I enabled the carers to evaluate their experiences of the group using a participatory action research model. The evaluation was divided into two phases. Phase 1 focused on how the carers developed effective processes to facilitate the individuals in the group to represent not only their experiences but those of the collective. I describe how a critical incident facilitated this discussion and how the carers used the action research cycle to enable this change. Phase 2 enabled the group to reflect on their experiences of the group's impact upon them. The carers identified the following main themes of their experience of the group: shared experience of mental health stigma; empowerment and increased confidence; increased knowledge to enable them to care for themselves and their loved one more effectively, although this was tinged with a sense of frustration. In this process, I reflect on the vision that I had for Carers Against Stigma (CAS) as a user researcher and practitioner working with carers. I discuss the potential conflict that I faced as a practitioner and researcher initiating a carer‐led group. The theoretical implications of the individual service representative representing the views of the collective are discussed, and their needs for access and support to be involved in research and service evaluation are identified.

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The organisation of dementia care by families in Malta: the experiences of family caregivers

This paper discusses the experiences of dementia family caregivers in Malta. The study design was essentially exploratory as this is the first funded social research on dementia in the island of Malta. In-depth semi-structured interviews were conducted in October 2008 with 17 caregivers. Identification of caregivers was through their relatives’ attendance at a hospital based outpatient memory clinic. Interviews were recorded, transcribed and when required, phrases were translated from Maltese to English. A thematic analysis was guided by the questions; What are the experiences of family caregiving in Malta? And what impact does caregiving have for individual/family life? Three key findings are discussed, namely: the organization of family care in Malta; the use of formal services; and the dislocation of dementia caregiving experiences from wider community life. This paper raises questions about support mechanisms currently available in Malta while presenting cross-national learning opportunities to apply established knowledge to the Maltese context.

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Access to respite breaks for families who have a relative with intellectual disabilities: a national survey

Aims.  This paper reports the findings of a national study of the variations in the provision and correlates of respite breaks to families.

Background.  Internationally, respite breaks are a major support service to family carers, demand for which often exceeds supply for persons with an intellectual disability. Hence, the length of breaks available to families has to be rationed. Nurses are often involved in such decisions.

Method.  National data on the use of respite breaks by over 4000 families in a full calendar year (2008) were analysed to examine the variation within the Republic of Ireland on two indicators: namely the proportion of carers who had any access to breaks and the median number of days they had received.

Findings.  Striking differences across health service areas were found on both indicators of usage. These were not solely attributable to the availability of provision but also reflected variations in the criteria local services used to allocate places. However, those persons with more severe disabilities were given priority, whereas carer characteristics were not a major influence. Contact with social workers and community nurses also increased the likelihood of carers receiving respite breaks.

Conclusion.  Intra-country comparisons of service delivery should assist planners in creating more equitable access to respite breaks and the development of more explicit eligibility criteria for their use. Nurses are well placed to lead on this.

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Extended safety and support systems for people with dementia living at home

Purpose – The purpose of this paper is to highlight the complexity surrounding the implementation of advanced electronic tracking, communication and emergency response technologies, namely, an extended safety and support (ESS) system for people with dementia (pwd) living at home. Results are presented from a Swedish demonstration study (2011-2012) conducted in 24 municipalities.

Design/methodology/approach – It is a descriptive intervention study with a pre-post test design. Questionnaires were administered to pwd, carers and professionals at the outset and eight months later. ESS logging data were analyzed.

Findings – ESS usage rates varied widely. A total of 650 alerts were triggered, mainly when the pwd was outdoors. Activities were reduced amongst pwd, most likely due to a progression of their disease. Carers noted that pwd were more independent than previously on those occasions when they engaged in outdoor activities. Staff considered that nearly half of pwd could remain living at home due to the ESS, compared with a third amongst carers. In total, 50 per cent of carers felt it was justified to equip their relative with an ESS without their explicit consent, compared to one in eight staff.

Research limitations/implications – A limitation is the amount of missing data and high drop- out rates. Researchers should recruit pwd earlier in their illness trajectory. A mixed-methods approach to data collection is advisable.

Practical implications – Carers played a crucial role in the adoption of ESS. Staff training/supervision about assistive devices and services is recommended.

Social implications – Overall, use of ESS for pwd living at home was not an ethical problem.

Originality/value – The study included key stakeholder groups and a detailed ethical analysis was conducted.

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Training as a vehicle to empower carers in the community: more than a question of information sharing

Much confusion still surrounds the concept of empowerment and how it is to be translated into practice within the context of community care for service users and carers. A major limitation has been the tendency to treat empowerment as synonymous with participation in decision-making with little attention given to the ‘ecological’ model of empowerment where linkages have been found between community participation and measures of psychological empowerment. Training has been suggested as a means through which carers might become empowered, yet to date little empirical evidence has appeared within the literature to support this proposition. This study investigated whether attendance on a training programme to empower carers resulted in improvements in carers’ levels of perceived control, self-efficacy and self-esteem as partial measures of psychological empowerment. The findings demonstrated that whereas carers’ knowledge of services and participation increased as a result of the programme, no changes were found in measures of carer empowerment. The failure to consider how training needs to be designed in order to achieve changes in individual competence and self-agency are suggested as the most likely explanation for the lack of change observed in carers’ psychological empowerment. It is suggested that community care agencies should focus greater energies in determining how the policy objectives of empowerment are to be achieved through training, and in so doing make far more explicit the supposed linkages between training content, design, and its posited impact on individual behaviour or self-agency.

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Mental health of carers

This report presents the findings of a survey of the mental health of carers living in England. The survey was commissioned by the Department of Health and was carried out between March and July 2001. It is one of a series of surveys of different population groups which began in 1993. The sample for the survey was obtained from people who were identified as carers on the basis of questions included in the 2000 General Household Survey. This report describes the extent to which carers experience mental health problems, such as depression, anxiety and phobias, and identifies a number of factors which are associated with increased levels of such symptoms. It considers a range of factors, such as the socio-demographic characteristics of the carer themselves, their health, the characteristics of those they care for, and the support they receive in their caring role. The report also considers to what extent those carers with mental health problems receive treatment. The report includes a description of the survey methods used and aims to provide an overview of the main topics covered.

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Social support in the case of illness: intergenerational solidarity

Background: Social support received through different forms of help from members of one's social network is an important element of coping with illness. In the case of illness, family members are the main providers of support, both within the same generation, but also, and increasingly so, between generations. This informal social support is related to socio-economic conditions of individuals: it is more common in lower economic and educational groups. Members of the middle generation, who help both the young and the old, are the main support providers. Also, female gender is the most significant predictor of the care burden. Withdrawing role of the welfare state in the postmodern society means shifting more responsibilities for care from the formal to informal sector. The aim of our study was to look into the characteristics of intergenerational support in illness in Slovenia. Methods: A cross-sectional study on personal support networks of the residents of Slovenia, sample size 5013, data collection by computerassisted telephone interviews, respondents above 18 years of age. Multiple Classification Analysis (MCA) was used for data analysis to find out how much the dependent variable deviated from the mean as a result of a given respondent characteristic while controlling for the effects of all others. Results: The analysis showed the proportion of respondents’ social network that would provide support in the case of illness and could be defined as intergenerational network. Intergenerational ties represent about 35 % of the whole support netork in illness. The most frequent receivers are the youngest group of respondents (18–29), followed by the 60+ age group. Women receive more help than men, especially those who are widows, living alone or living in multigenerational households. Intergenerational support is more frequent among the less educated respondents. Discussion: Our results comply with the findings in the literature, and are indicating that the actual trends in the changing structure and composition of the family, combined with less support from institutional health- and social care, is increasing the care burden of the informal carers within families. Conclussions: Health and social care policy and practice need awarness of the contextual factors of health care outcomes, taking into consideration social support networks’ functions.

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Formal support for informal caregivers to older persons with dementia through the course of the disease : an exploratory, cross-sectional study

BACKGROUND: In European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (≥65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease.

METHODS: A mapping system was used in 2010-2011 to gather information about estimations of availability, utilization, and professional providers of support to informal caregivers caring for PwD. Data collected was representing each country as a whole.

RESULTS: There was high availability of counselling, caregiver support, and education from the diagnosis to the intermediate stage, with a decrease in the late to end of life stage. Utilization was low, although there was a small increase in the intermediate stage. Day care and respite care were highly available in the diagnosis to the intermediate stage, with a decrease in the late to end of life stage, but both types of care were utilized by few or no caregivers through any of the disease stages. Professionals specialized in dementia (Bachelor to Master's degree) provided counselling and education, whereas caregiver support for informal caregivers and day care, respite care, and respite care at home were provided by professionals with education ranging from upper secondary schooling to a Master's degree.

CONCLUSIONS: Counselling, caregiver support, and education were highly available in European countries from diagnosis to the intermediate stage of the dementia disease, decreasing in the late/end of life stages but were rarely utilized. Countries with care systems based on national guidelines for dementia care seem to be more aware of the importance of professionals specialized in dementia care when providing support to informal caregivers. Mapping the systems of support for informal caregivers of PwD is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making.

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Parent caregiving choices of middle-generation Blacks and Whites in the United States

Objective: This study compares how middle-generation caregivers and non-caregivers differ by race and explores racial differences in activities of daily living (ADL), instrumental activities of daily living (IADL), and financial assistance that middle-generation caregivers provide for their parents. Method: Using 2000 Health and Retirement Study data, racially stratified descriptive analyses and logistic regression models for ADL, IADL, and financial assistance are presented. Results: Parental need and race influence support, with similar patterns of Black and White ADL support, but racial differences in IADL and financial support. Having more children motivates Whites to increase IADL support and reduce financial support; more children decreases Blacks' IADL support. Sibling caregiver networks influence IADL and financial support in ways that vary by race. The number employed is a key determinant for Blacks for all support, but only influences White ADL support. Discussion: The findings of this article indicate the importance of sample stratification by race and that employment or other subsidies may aid the expansion of caregiving by middle-generation adults.

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Reality check: a participation toolkit for adults working with young people leaving care

Based on young people's own accounts, this DVD and toolkit gives care workers a valuable opportunity to reflect on and improve practice.

It provides activities for use within staff teams and with young people. The DVD features six young people who identify gaps in communication between themselves and social workers in leaving care and preparing for the real world. The accompanying training tools: - explore how social workers engage with young people - provide activities for use with staff teams and young people - promote youth participation in decision making. This toolkit is ideal for any care professionals working with young people leaving care.

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Remember the body: promoting physical health in dementia care

This article outlines the benefits and challenges associated with health promotion for people with dementia and their carers. It then provides an overview of the Manchester Supporting Health Dementia Programme (MSHDP) pilot, which ran from November 2009 to March 2012. The programme provided a health check service and also aimed to improve the availability of access to health improvement opportunities. A summary of the main outcomes from the independent evaluation are provided.

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Empowering carers to reconstruct their finances

This paper reports a welfare rights intervention for carers of dying people through seminars to help them organise family finances to deal with additional costs of the final illness, funeral costs and reconstruction of family finances after death. Seminars on financial affairs were provided to 103 carers and service users, and were evaluated by questionnaires. The seminars were very positively received by attenders, who felt better informed, but were not necessarily more confident in dealing with financial problems. The positive response was maintained for several months after the seminars. A number of features of the educational, business-like approach were potentially empowering, but this strategy needs to be part of a wider strategy of information-giving and support to meet the needs of carers for whom such an approach is not suitable.

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Aphasia blog talk: How does stroke and aphasia affect the carer and their relationship with the person with aphasia?

Background: Carers of stroke survivors with aphasia are at risk of experiencing negative bio-psychosocial consequences and reduced quality of life. So far, in aphasia studies, this has mainly been explored through qualitative interviews and questionnaires. Unsolicited first-person narratives in the form of blogs offer a novel and rich source of data to examine how stroke and aphasia affect the carer and their relationship with the person with aphasia.

Aims: This study explored how carers of people with aphasia perceive their roles and responsibilities; it also examined the consequences of carrying out these carer roles and duties, in terms of both the carer’s own well-being and their relationship with the person with aphasia; furthermore, it investigated facilitative factors in their adaptation to the carer role.

Methods & Procedures: Publically available blogs written by carers of aphasic stroke survivors, which included information on how stroke and aphasia affect the carer and their relationship with the person with aphasia, were analysed using the Framework Method.

Outcomes & Results: The search resulted in nine carer blogs. The number of posts per blog ranged from 13 to 241. For blogs containing over 90 posts, the first and last 30 relevant posts were collected and analysed. New roles and extra responsibilities identified by participants included having to act as therapists, nurses, counsellors, and administrators and carrying out tasks usually assigned to the other person in the relationship. The extra tasks and duties impacted on the carers’ quality of life and their relationship with the person with aphasia in negative ways, such as leading to physical and mental exhaustion, health issues, feeling lonely, and resentful of their circumstances; however, participants also identified positive changes such as new closeness, new appreciation of life, and pride in achievements. A variety of strategies emerged from the data that helped carers adjust to their new roles. Strategies included positive reframing, allocating time to oneself, and seeking support from family and friends. The activity of blogging was also mentioned as having beneficial effects on the carers’ well-being.

Conclusions: The study provides further evidence for the specific challenges faced by carers of people with stroke and aphasia; it thus confirms the importance of addressing carer related needs in intervention and considering psychosocial well-being for both the carer and the person with aphasia.

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Supporting carers : early interventions and better outcomes

Over the last two years we have been working together to take forward the National Carers' Strategy, published in 2008, in the context of more personalised support and sustained independence for carers and service users. This paper is the third in a sequence of short reviews designed to stimulate debate and improve the support for carers. At a time when we face many challenges around resources it is doubly important that we keep our sights firmly on the improved outcomes that can be secured through early intervention and preventative support. The review contains five key messages. They support the current policy advice on personalisation and eligibility for support. They highlight the good evidence that does exist, but also point to a need for a much stronger evidence base around which service users, carers, commissioners and providers can better judge how well we are doing. These aspects are all relevant to achievement of the aims of the national strategy for carers that we have signed up to. In summary, a stronger focus on better outcomes and value and the ability to evidence this through innovation, partnership with carers and by taking the opportunities locally to secure a strategic shift towards prevention and early intervention is needed

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'The web is not enough, it's a base'--an explorative study of what needs a web-based support system for young carers must meet

The aim of this study was to gain knowledge about the specific needs that a web-based support system for young carers (YCs) must meet. Twelve young people with experience of caring for and supporting a close friend, partner or relative with mental illness (MI) were interviewed about their life situation, support needs and opinions about a hypothetical web-based support system. The transcribed interviews were analysed using content analysis. The analysed data were organised into three themes relating to support needs, each including a number of sub-themes: knowledge – understanding MI, managing the mentally ill person and self-care; communication – shared experiences, advice and feedback, and befriending; and outside involvement – acute relief, structured help and health care commitments. Web-based support for YCs may be a suitable way to meet the need for knowledge and to meet some of the needs for communication. We have outlined a concept of a geographically anchored web support to meet the need for befriending, facilitate connections to health and social care, and increase understanding and interaction between the parties involved. Further research is needed to corroborate the results.

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End of life care strategy: promoting high quality care for all adults at the end of life: executive summary

The End of Life Care Strategy promotes high quality care for all adults approaching the end of life in England. Its aim is to provide people approaching the end of life with more choice about where they would like to live and die. It encompasses all adults with advanced, progressive illness and care given in all settings. It recommends a care pathway involving the following steps: identification of people approaching the end of life and initiating discussions about preferences for end of life care; care planning which includes assessing needs and preferences, agreeing a care plan to reflect these and reviewing these regularly; coordination of care; delivery of high quality services in all locations; management of the last days of life; care after death; and support for carers, both during a person’s illness and after their death. Ensuring that health and social care staff at all levels have the necessary knowledge, skills and attitudes related to care for the dying will be critical to the success of improving end of life care.

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Activity monitoring to support independent living in Dutch homecare support

Objective: Detecting changes in activity performance by persons living at home may provide to be a powerful tool to support them to live independently. To this end a new care arrangement had to be developed in which commercial available technology is used by a homecare organization and informal carers. The objective of this study is a) to organize the conditions needed to deliver care support to people living independently and b) to investigate the effectiveness thereof.

Main Content of paper: A commercial available technology was identified by which activities of seniors performed in their own home can be monitored. A combination ofInfra Red motion sensors is installed in the house by which data are collected. Data analysis results in information to healthcare professionals as an urgent alert (by voicemail) or as a non-urgent alert( through a web-interface). The communication infrastructure was organized on a 2417 basis. Careworkers of a homecare organization identified clients that could benefit of this supporting service. A care arrangement was agreed between the client and the care organization. In this the actual use of the infrastructure was specified. The conditions are first piloted on a small scale project; thereafter an implementation study is started. During this implementation study an increasing number of clients are supported by this arrangement. Also the number of formal and informal careworkers increased.

Results: During the project the conditions needed to implement this arrangement as a regular service to support independent living elderly are investigated. These comprised of establishing standard operation protocols at the technology and at the service level, protocols to introduce new clients and (informal) careworkers in using the infrastructure, protocols for data management as well as the financial conditions involved. Based on the effects obtained during the project the conditions needed to organize continuation of this service as part of routine procedures of a home-care organization are analyzed as well. A societal business case was developed. In this the following elements are described 1) the business model consisting of: a) indentification of the preferred user groups ( frail elderly living independently; informal carers, professional carers) b) the technical and organizational conditions c) the costs and revenues of service delivery, and 2) the societal case consisting of a) revenues at the care level, b) revenues at the wellbeing level. Taken together the societal business case was used as a negotiating paper used to organize the conditions required for the continuation of this service. At time of completion of this paper the negotiations are closed. It is concluded that the care organization is enabled to continue this service until the end of 2012.

Conclusions: The use of technology to support people living independently may be incorporate in a service arrangement to deliver care at a distance. Implementation research demonstrates the effectiveness thereof. Organizing structural conditions requires a change in the perception of both clients, careworkers and care organizations.

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Caring about carers: a strategy for carers in Wales: the third report: summary document

Package of measures aimed at local authorities and other agencies to provide more support to carers in Wales. Contents include: health and social care; information; support; young carers; carers and employment; quality assurance, monitoring and evaluation.

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What knowledge and skills do caregivers need?

Caregivers need certain knowledge and skills both to provide the best possible care and to protect their own well-being.

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Family caregiver self-identification: implications for healthcare and social services professionals

This article focuses on a phenomenon that health and social service professionals face: Many family caregivers do not self-identify. The consequences of this lack of self-definition and the implications for development of programs that serve caregivers are discussed. The Mount Sinai Medical Center Caregivers and Professionals Partnership is described as an example of a hospital-based program that has recognized this dilemma and worked toward reaching out to those who do self-define, as well as those who may not.

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A qualitative study of stroke patients' and carers' perceptions of the stroke family support organizer service

Objective: To investigate stroke patients’ and carers’ perceptions of the family support organizer (FSO) service in order to highlight its value for potential purchasers and to help shed light on findings from randomized controlled trials.

Design and subjects: Twenty semi-structured interviews were undertaken with a sub sample of stroke patients and their primary informal carers after completion of nine-month outcome assessments as part of a randomized controlled trial.

Setting: Community stroke services in North Nottinghamshire, UK.

Results: Interviewees who received the service reported that the presence of an FSO was valuable in many respects, including helping to claim benefits, as a source of information on stroke, and providing continuity between stroke services. Emotional support was only described by a few. Interviewees who did not receive the service described feelings of isolation and being let down by other stroke services after discharge. They also reported problems accessing information. Help needed to address the practical problems after stroke was commonly reported. For those who did not receive the FSO service, access to support appeared to be found through other channels.

Conclusion: The FSO service appeared to be an information service. In order to evaluate community stroke services, a mixture of qualitative and quantitative outcome measures are necessary.

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Different but the same? Exploring the experiences of young people caring for a parent with an alcohol or other drug issue

Although children of parents with an alcohol or other drug (AOD) issue appear to assume a range of caring responsibilities within their families they have, until recently, been excluded from the growing body of young-carer research, policy and practice. This is problematic, as this group may experience greater levels of social exclusion whilst experiencing similar negative impacts of care as their caring peers. This paper discusses the findings of an exploratory qualitative research project conducted in Canberra, Australia which attempted to further understand these young people's experiences and to consider how they might best be supported. The paper challenges the way that young caring has been conceptualised and suggests that unless a number of conceptual, structural and organisational changes are made, young people caring for a parent with an AOD issue may remain relatively unsupported.

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Young Carers: Mature Before Their Time

The article provides an overview on young carers the services they need within their community. It notes that young carers are individuals under 18 who provide primary care in their families due to parental addiction, disability, illness. Further, it states that parental absence due to divorce, desertion, or overseas military service can also serve as a ground for youth to become young carers. It mentions the negative impact of caregiving among young carers including the loss of childhood through having to provide care for other family members, poor social skills, and stress caused by conflicting needs and situations.

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Improving Life Satisfaction for the Elderly Living Independently in the Community: Care Recipients' Perspective of Volunteers

With an aging population who wish to remain living in the community, this article explores the experiences and benefits of receiving volunteer services from a home support program established to assist people with increasing needs to remain living independently. Face to face interviews explored how the services of informal carers (volunteers) provided through the program made a difference to the daily lives of 16 recipients. Improved life satisfaction was identified through the themes of being helped with daily activities, positive human contact, and fear of a poorer quality of life. It was found that addressing recipients' social, emotional, and mobility needs supported them to remain living at home.

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Supporting young carers: a qualitative review of young carer services in Canada

In Canada, a growing number of young people (i.e., young carers) provide an increasing level of unpaid care to family member(s) with a chronic illness, disability, mental health or substance use issue and/or problems related to old age. Despite young carers occupying a central role in public policy and social service programming in other countries, very little attention has been paid to these youth in Canada, with no dedicated policies acknowledging their care-work and only a handful of non-profit organisations struggling to support their needs. This article provides the first known qualitative review of existing young carer programmes in Canada, using interview data with staff at each operational site to: (1) review the range of services offered to young carers and, (2) document barriers to improving their scope and reach. Findings show that available support services are in a preliminary assistance–mitigation phase, with various constraints related to funding and reach that impede their movement to a model of prevention.

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Living with Parkinson's disease in the community: improving assessments and interventions

Understanding how long-term illness affects quality of life for patients and families is central to providing individualised, patient-focused care in the community, as Leire Ambrosio and colleagues explain

Parkinson's disease (PD) is a long-term condition that affects patients' and carers' quality of life. It is important to develop and implement new approaches that bring together health and psychosocial care for people living with chronic illnesses such as PD. The authors emphasise the role of primary care nurses in supporting patients and their informal carers, and outline how practitioners can focus care on patients' psychosocial as well as physical needs. The article includes a literature review of the process of living with PD and discusses the development and implementation of interventions based on assessments tailored to the individual needs of patients and their carers.

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Evaluation of DEM-DISC, customized e-advice on health and social support services for informal carers and case managers of people with dementia; a cluster randomized trial

Few personalized e-interventions are available for informal and professional caregivers of people with dementia. The DEMentia Digital Interactive Social Chart (DEM-DISC) is an ICT tool to support customized disease management in dementia. The aim of this study was to improve and evaluate DEM-DISC, its user-friendliness and usefulness and to investigate the future implementation.

A cluster randomized controlled trial (RCT) design was used with measurements at baseline, 6 and 12 months. A total of 73 informal caregivers of people with dementia, supported by 19 randomized case managers participated in the study. In the intervention group, both carers (n = 41) and case managers (n = 13) could access DEM-DISC during twelve months. The control group, 32 carers and 14 case managers, had no access to DEM-DISC. Semi-structured interviews were conducted with ten stakeholders.

Informal caregivers who used DEM-DISC for twelve months reported an increased sense of competence than controls. A subgroup of users who frequently accessed DEM-DISC reported more met needs after six months than controls. Overall informal caregivers and case managers judged DEM-DISC as easy to learn and user-friendly.

This study demonstrates that using DEM-DISC had a positive effect on the sense of competence and experienced (met) needs of informal carers. This shows the importance of user-friendly ICT solutions to assist carers in finding appropriate care services tailored to their specific situation and needs. For further implementation of DEM-DISC methods to keep the information updated is of great importance.

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User responses to assisted living technologies (ALTs) -- a review of the literature

This paper reports the findings of a literature review conducted to investigate user responses to assisted living technologies (ALTs), principally telehealth and telecare applications. A combination of search terms identified approximately 75 relevant publications, including reports of studies in the US, Australia, Europe and the UK. The documents were analysed to extract data relating to end-user needs, what attracts end users and informal carers to telehealth/telecare services, and what deters them from adopting these technologies. Some key challenges arising for the uptake and adoption of ALTs are then discussed, and significant user requirements emerging from the evidence are identified. The paper concludes with suggestions for the next steps to be taken to promote effective and appropriate use of ALTs.

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A critical consideration of the cash for care agenda and its implications for social services in Wales

This paper considers cash for care as reflected in direct payments and the more recent development of individual budgets in England. While the momentum to roll out individual budgets gathers pace in England, Wales has embarked on a more cautious approach in wishing to evaluate the impact of individual budgets on social services. The paper identifies some of the far reaching implications of cash for care in general and individual budgets in particular, for service users, carers ‐ both paid and informal ‐ and for the social work profession. The policy incoherence in relation to risk and safeguarding is highlighted. This paper supports the approach currently adopted by the Welsh Assembly Government in relation to the ‘rolling out’ of individual budgets. The Assembly's 10‐year strategy for social services focuses on the rights of citizens and the needs of communities. This paper argues that fulfilling that vision should not be wholly contingent upon an unproven extension into the field of individual budgets.

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The invisible contract: shifting care from the hospital to the home

The ageing population and associated burgeoning health care costs have resulted in a shift of care from institutional settings to home and communitybased care. As one example, rehabilitation-in-thehome (RITH) programs are becoming increasingly prevalent. These programs either substitute or supplement in-hospital treatment by providing multidisciplinary rehabilitation and support services in the client?s own home. This paper investigates the impact of RITH programs on informal carers. Semi-structured interviews carried out with caregivers and staff revealed a complex and contradictory interpretation of informal caring. Analysis of carers? interviews revealed: an assumption by themselves and others (including RITH staff) that they would provide care; the intimate, arduous and relentless work of caring; lack of consultation about discharge; lack of recognition and reimbursement; and low levels of program support for them as carers. Carers are integral to the successful rehabilitation of the client, but they occupy a marginal status within the program. An invisible contract consigns to them substantial care-work that was previously provided by the hospital. Informal carers in RITH programs can be seen as disenfranchised care contractors. This has implications for policy makers, program managers and researchers.

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The inter-relationship between formal and informal care: a study in France and Israel

This study examined whether formal care services delivered to frail older people's homes in France and Israel substitute for or complement informal support. The two countries have comparable family welfare systems but many historical, cultural and religious differences. Data for the respondents aged 75 or more years at the first wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) were analysed. Regressions were examined of three patterns of care from outside the household: informal support only, formal support only and both formal and informal care, with the predictor variables including whether informal help was provided by a family member living in the household. The results revealed that about one-half of the respondents received no help at all (France 51%, Israel 55%), about one-tenth received care from a household member (France 8%, Israel 10%), and one-third were helped by informal carers from outside the household (France 34%, Israel 33%). More French respondents (35%) received formal care services at home than Israelis (27%). Most predictors of the care patterns were similar in the two countries. The analysis showed that complementarity is a common outcome of the co-existence of formal and informal care, and that mixed provision occurs more frequently in situations of greater need. It is also shown that spouse care-givers had less formal home-care supports than either co-resident children or other family care-givers. Even so, spouses, children and other family care-givers all had considerable support from formal home-delivered care.

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S09-05 Beyond family burden - the complexities of carer roles

In her talk, Sigrid Steffen will speak about the core aims of EUFAMI in respect to family members and carers. Sigrid will base a lot of her talk around her own personal experience as a carer of a son who was diagnosed with schizophrenia, and she will augment this with experiences of other members of EUFAMI from across Europe. She will elaborate on the stresses and strains under which family members (the carers) come under and will discuss the challenges which carers face on a daily basis. Her talk will also include a description of a typical 'journey' which carers and families travel in the execution of their caring role in an attempt to describe the various feelings and pressures they experience. Sigrid will also discuss what she understands to be the critical needs of carers and the level of support required. In particular Sigrid will concentrate on the stigma which families feel and experience during their lifetime, a aspect which is little understood and appreciated by the wider public. In conclusion, Sigrid will detail some of the work which EUFAMI has been and is involved with and which is related to the subject of her talk. 

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Children and Adolescents Providing Care to a Parent with Huntington's Disease: Disease Symptoms, Caregiving Tasks and Young Carer Well-Being

Background: Over 30,000 people in the U.S. have Huntington’s disease (HD), a disorder with numerous complicated, long-lasting and stigmatizing symptoms. Caregiving typically falls to the family, yet little is known about the caregiving experience of children and adolescents in the home.

Objective: Guided by the stress process model, this exploratory study sought to describe children and adolescents who care for a parent with HD and their caregiving experience, by detailing previously unknown relationships between caregiving, parent/child conflict, school problems, and psychological well-being of child/adolescent caregivers.

Methods: This cross-sectional study used semi-structured interviews with a purposive sample of 40 children and adolescents, aged 12–20, who care for a parent with HD. Data was analyzed using descriptive and correlational statistics. Measures included the Children’s’ Depression Inventory, The Conflict Behavior Questionnaire, and the Multidimensional Assessment of Caring Activities.

Results: Study participants have substantial caregiving responsibilities (>11), with half providing personal care to a parent. The majority experienced school problems and conflict with parents (60 and 92 % respectively). Caregiving tasks were associated with problems with school and conflict with the ill parent. Furthermore, parental symptoms were associated with poor psychological wellbeing, parental conflict, and school problems for the caregivers.

Conclusion: Children and adolescents are involved in numerous tasks and describe difficulties with their daily life and well-being. Results highlight the need for the development of support services for caregivers, as well best care practices for problematic HD symptoms. Study outcomes address minimizing the potential for negative caregiving experiences of these vulnerable caregivers.

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Change and Adaptation in Families with Young Carers

Using grounded theory methodology, members of nine families with 'young carers' were interviewed to explore their experiences of caring. A dynamic theory of change and adaptation emerged in relation to changes in who cares within families, in external support and in the attitudes of young carers towards caring. Adaptations included becoming used to the way life is, knowing how to care, balancing and trading off, rewarding care, and anticipating future adaptations. A model has been developed to offer an explanation of factors which influence young caring in families. These include family expectations about caring; who is available to care; the willingness and capability of young carers to help; and the degree of choice or obligation they experience. Formal and informal support services from outside the family, and environmental adaptations, can reduce the amount of family caregiving required, increase choice and contribute to balancing life for carers. 

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Seeking a balance between employment and the care of an ageing parent

Rationale:  A growing number of middle-aged people are engaged in informal care of their parents while employed. To provide support as employers, co-workers or staff, health care professionals need insight into the experiences of people managing these responsibilities.

Aim:  To elucidate the experience of providing informal care to an ageing parent while managing the responsibilities of a working life. Methods:  Narrative interviews were performed with 11 persons with experience of the phenomenon. Transcribed interviews were analysed with phenomenological hermeneutics. Ethics:  Informed consent was given prior to the interviews. The study was approved by a research ethics committee.

Findings:  Providing informal care to an ageing parent while also pursuing a working life implies seeking balance: a balance between providing support to the parent’s needs and one’s responsibilities at work. Being employed supports this balance as it provides both fulfilment and refuge. Being capable of managing both roles grants a sense of satisfaction, supporting one’s sense of balance in life. The balance can be supported by sharing the responsibility of caring for the ageing parent with others.

Study limitations:  Despite perceived saturation and an effort to provide for the possibility to consider internal consistency, the findings should be considered as a contribution to the understanding of the phenomenon, as experienced by individuals in their life world.

Conclusions:  It is essential to recognise the impact that providing care for an ageing parent may have on the lives of a growing number of people, particularly if they have employment responsibilities. Acknowledgement by others supports one’s ability to attain balance; as co-workers and managers, we can acknowledge the efforts of an informal caregiver and as health care staff recognise the valuable contribution made by people in mid-life who provide informal care for their ageing parents.

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What patients and carers want to know: an exploration of information and resource needs in adult mental health services

Objective: The objectives of this study were to: (i) obtain baseline data on the extent of carer involvement across a representative sample of hospital and community patients within an integrated area health service; and (ii) examine perspectives on discharge planning and community care among patients and their carers to identify information and resources they consider important.

Method: Over a 4-month period, inpatients before discharge and patients accessing community mental health services participated in face-to-face interviews. Information was collected about carer involvement and, with the patient's consent, the identified carer was sent a similar survey to determine demographics and information needs. This resulted in a representative sample of patients and carers accessing inpatient and community settings acrossa metropolitan mental health service. Support needs and carerburden were also assessed but are not reported here.

Results: A total of 407 interviews were completed, 207 in inpatient settings and 200 in the community. An inpatient response rate of 70% and a community response rate of 75% was achieved. Across both settings, 67% of patients identified a carer and a carer response rate of 28% was then obtained. We found carers and patients have different priorities regarding the information they want and information is often not provided to carers. Furthermore, patients were more confident in their ability to manage their mental health in the community than carers.

Conclusions: This study yielded important baseline data about the number of patients who have a carer. We were also able to determine that routine clinical information provided to patients and carers is inadequate from their perspective. It is anticipated that this initiative will assist ongoing service planning and improve partnerships with patients and their carers.

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Cohort study of informal carers of first-time stroke survivors: profile of health and social changes in the first year of caregiving

Informal carers underpin community care policies. An initial cohort of 105 informal live-in carers of new stroke patients from the South Coast of England was followed up before discharge, six weeks after discharge and 15 months after stroke with face-to-face interviews assessing physical and psychological health, and social wellbeing. The carer cohort was compared to a cohort of 50 matched non-carers over the same time period. Carer distress was common (37–54%), started early on in the care-giving experience and continued until 15 months after stroke. Carers were 2.5 times as likely as non-carers to have significant psychological distress. Presence of early distress predicted 90% of those significantly distressed 15 months after stroke. Female carers were likely to develop distress earlier than male carers and in anticipation of the care-giving situation. Male carers developed similar levels of distress but only once the care-giving situation became reality. Further research is needed to establish ways to screen for psychological distress early after onset of caregiving, to find ways to tailor proven support interventions to the individual carer, and to evaluate the effect of early detection and support provision on later carer distress.

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Heart of the matter

The Public Health White Paper fails to mention supporting carers' health. Looks at the importance of protecting carers health and the need to provide carers with adequate breaks.

Assistance of family carers for patients with COPD using nebulisers at home: a qualitative study

Objective For many patients with chronic conditions, such as chronic obstructive pulmonary disease (COPD), the assistance of family carers with medicines is vital for optimal treatment outcomes. The aim of this study was to identify the assistance carers provide to patients with COPD using nebuliser-delivered therapy at home, and the problems experienced that may impact on the safety and effectiveness of therapy and contribute to carer burden.

Methods A cross-sectional, qualitative descriptive study was conducted with participants recruited from primary and intermediate care. Home interviews were conducted with 14 carers who assisted a family member with COPD using a nebuliser. Qualitative procedures enabled analysis of nebuliser-related activities and problems experienced by carers.

Results The carer sample included 10 female and 4 male carers, with a mean age of 61 years: 11 spouses and 3 daughters. They had assisted patients with use of their nebuliser and associated medications for, on average, 4.5 years. Assistance ranged from taking full responsibility for nebuliser use to providing help with particular aspects only when required. Nebuliser-related activities included assembling and setting up equipment, mixing medicines, operating the device, dismantling and cleaning equipment. Difficulties were described with all aspects of care. Carers reported concerns about medication side effects and the lack of information provided.

Conclusions The study revealed the vital role of carers in enabling effective therapy. The wide-ranging responsibilities assumed by carers and problems experienced relate to all aspects of COPD management with nebulisers, and have a potential impact on treatment outcomes and carer burden. A systematic approach to addressing carers’ needs and prioritising support would be anticipated to have positive consequences for patients, carers and health services.

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Bipolar disorder in adults: QS95

This NICE quality standard covers recognition, assessment and management of bipolar disorder in adults (18 years and older) in primary and secondary care. It outlines eight quality statements designed to improve patient safety, patient experience and clinical effectiveness. The eight quality statements are: referral for specialist mental health assessment; personalised care plan; involving carers in care planning; psychological interventions; maintaining plasma lithium levels; valproate; assessing physical health; and supported employment programmes. Each quality statement is accompanied by clear quality measures. The standard aims to improve outcomes in: mortality rate, suicide rate, quality of life for people with severe mental illness, quality of life for carers, employment rates, and service user experience of mental health services.

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People not processes: the future of personalisation and independent living

This report summarises findings from two seminars which aimed to bring together a range of perspectives on personalisation and its future. Participants included service users, carers, social care practitioners (including a personal assistant, support worker and a care home manager) and policy makers. The report looks at what personalisation meant those attending and presents some key characteristics. It then gives brief examples of how service users, carers and practitioners have experienced personalisation; identifies barriers to accessing personalised services; and provides examples of good services and hopes for the future. The agendas for the two seminars are included as appendices. The report is available in pdf and online format. The online report features videos of presentations made at the seminars, including video accounts of individual stories demonstrating how flexible approaches to service delivery are more empowering for the person receiving those services.

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Partners in care? Views and experiences of carers from a cohort study of the early implementation of the Mental Health (Care & Treatment) (Scotland) Act 2003

Carers are seen as legitimate stakeholders in wider policy processes and increasingly as ‘co-producers’ and key providers of care. Mental health carers, however, especially those caring for relatives subject to compulsory care and treatment, often feel overlooked and marginalised, caring in complex circumstances with little or no professional support. The Mental Health (Care & Treatment) (Scotland) Act 2003 (MHCT Act) implemented in 2005 aspired to change this for the better. This article focuses specifically on findings from seven focus groups and 10 individual interviews with 33 carers from three Health Board areas and the State Hospital in Scotland. Interviews were conducted at two stages during 2007 and 2008 as part of a wider study. Participating carers were supporting relatives who were under different compulsory measures and so had experience of new procedures under the MHCT Act. The data were gathered as part of a cohort study exploring service users’, carers’ and professionals’ early experiences of the Act’s implementation. A topic guide was used to explore the impact of compulsion on carers; the ‘Named Person’ role; Mental Health Tribunals; the principles underpinning the MHCT Act; and suggestions for improving the law. The study found that new provisions, in particular the Named Person role and Mental Health Tribunals, had resulted in positive change. However, many carers still felt isolated and unsupported. They remained critical of the lack of consultation and involvement at both individual and collective levels. Few were aware of their right to a carer’s assessment and many were sceptical that this would make any difference. Acknowledging the study’s limitations, we discuss the implications for practice in light of broader policy agendas of personalisation, recovery, recognition for carers and promotion of more community-based mental health services.

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Service barriers of Chinese family caregivers in Canada

Family caregiving is a stressful process, especially when the complexity of being an immigrant or ethnic minority is added. This paper examined service barriers experienced by Chinese immigrant family caregivers in Canada and the predictors of different types of barriers. Principle component analysis was performed with the barriers reported loading onto cultural barriers, administrative problems, circumstantial challenges, perceived negative quality of services, and personal attitudes. Multiple regression analysis was used to identify the role of the culture-related factors in predicting service barriers, controlling for socio-demographic status of the caregivers'. The results show that financial factors significantly predicted the number and types of barriers reported by the caregivers. Culture-related factors were significant in predicting the total number of access barriers and the different types of barriers experienced by the family caregivers. The findings indicate the importance of culturally sensitive support for family caregivers in order to reduce the access barriers.

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Service utilisation by carers of people with dementia in rural Victoria

Aim: To explore the use of community and dementia-specific services by informal carers caring for someone with dementia in a rural setting.

Methods: Carers of people with dementia were recruited through a variety of rural community services and invited to complete a survey related to the utilisation of community services.

Results: A total of 39 carers completed surveys. Despite 84% reporting use of the Aged Care Assessment Service and 61% reporting provision of printed information on the services available, less than half of the carers utilised commonly available support services. Only 46% received financial compensation for their carer role.

Conclusions: Rural carers of care recipients with behavioural and psychological symptoms of dementia underutilise community services. Services that may assist with carer stress and depression and services that provide advice on the management of distressing behavioural and psychological symptoms of dementia were utilised by less than half of the carers surveyed.

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Intention and use of long-term care facilities and home support services by Chinese-Canadian family caregivers

One common myth about ethno-cultural minority family caregivers is that they do not use formal services. This study examined the intention of using home support and long-term care facilities by a random sample of 339 Chinese-Canadian family caregivers, using a modified version of the Andersen-Newman service utilization model. Filial piety, caregiving burden, care receivers, and health conditions are the common predictors identified. Filial obligation is most likely manifested through facilitating the care receivers to make use of the services needed, particularly for caregivers who reported a high level of caregiving burden.

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Participants' experiences of hospital-based peer support groups for stroke patients and carers

Purpose: The aim was to examine stroke patients’, carers’ and volunteer supporters’ experiences of peer support groups during hospital rehabilitation. Methods: Semi-structured interviews and questionnaires were analysed by inductive thematic analysis. Participants also answered a standardised Therapeutic Factors Inventory (TFI). Results: Five superordinate themes emerged for patients, carers and volunteer supporters. Three themes related to group processes; ‘practical issues’ (five subthemes), ‘staff presence’, ‘similarity-difference’, and comparison with other group members. ‘Value of peers’ (five subthemes) described beneficial outcomes. The ‘similarity-difference’ theme and four subthemes under ‘value of peers’ were related to items from the TFI which drew agreement from most participants. The supporters had some unique themes; two were concerned with group organisation, one was the experience of ‘being helpful to others’ and one described the experiences of training. As well as its links with themes, agreement with TFI items revealed experiences that did not emerge as themes; feeling secure, expressing emotions and increased independence. Conclusions: Participation in the group was experienced as beneficial by participants. Benefits included helpful information, advice, making new connections and increased awareness of stroke. Participants identified important group processes such as upward and downward comparison. Responses to the TFI suggested that attendance brought therapeutic gains.

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AmI and Deployment Considerations in AAL Services Provision for Elderly Independent Living: The MonAMI Project

The MonAMI project aims to investigate the feasibility of the deployment of open platforms for Ambient Assisted Living (AAL) services provision based on Ambient Intelligence (AmI) and to test user acceptance and the usability of the services. Services were designed to provide support in the areas of environmental control, security, well-being and leisure. These services were installed and evaluated in a Spanish geriatric residence. The participants included elderly persons with disabilities, nursing home care givers and informal carers. The concept of the open platform proved to be satisfactory for the provision of the services in a context aware framework. Furthermore, the usability of the technology was viewed positively and the overall results indicate that this system has the potential to prolong independent living at home for elderly people with disabilities. Deployment was proven successful and awareness of open-platform AAL service delivery was raised in local communities throughout Europe.

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Hip fracture patients' cognitive state affects family members' experiences - a diary study of the hip fracture recovery

Background: Many patients with hip fractures suffer from dementia disease, which has shown to affect the outcome of recovery strongly, as well as care and treatment. As most hip fracture patients are discharged home early after surgery, caregiving often falls on family members – spouses, daughters, sons, or even neighbours become informal carers.

Aim: To explore how hip fracture patients’ cognitive state affect family members’ experiences during the recovery period.

Methods: Eleven diaries written by family members’ of hip fracture patients were analysed by means of qualitative content analysis.

Findings: The analysis generated two main categories with four categories. The first main category was; ‘Being a family member of a cognitively impaired patient’ with the categories ‘Dissatisfaction with lack of support’ and ‘Emotional distress due to the patient’s suffering’. The second main category was ‘Being a family member of a cognitively intact patient’ with the categories ‘Satisfaction with a relative’s successful recovery’ and ‘Strain due to their caring responsibilities’. Being a family member of a patient with cognitive impairment and a hip fracture meant being solely responsible for protecting the interests of the patient; in regard to care, rehabilitation and resources. The family members were also burdened with feelings of powerlessness and sadness due to the patients’ suffering. On the contrary, family members of cognitively intact hip fracture patients had positive experiences. The family members expressed pleasure from seeing their close ones make progress. However, when the healing process was delayed this led to strain on the family members.

Conclusions: The findings suggest the hip fracture patient’s cognitive state is more decisive than the hip fracture itself for the family members’ experiences.

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Shadow Times: The Temporal and Spatial Frameworks and Experiences of Caring and Working

In this article we explore temporal and spatial frameworks for analysing the experience of combining caring for children with participation in paid work. We highlight the pressure to undertake paid employment routinely, which places particular strains upon people who are most likely to have to combine caring and working. The authors assert that mothers continue to have the main responsibility for the organization, if not the conduct, of caring work (Sevenhuijsen, 1998). Traditional assumptions about the seeming relationship between femininity and caring remain relatively intact, despite major shifts in family formation, women’s participation in the labour market and debates about the changing role of men (Cancian and Oliker, 1999; Lister, 1997). Drawing upon the work of Adam (2000) on timescapes we develop the notion of caringscapes as a means by which the processes of combining caring and working may be theorized and also incorporated into UK government policy related to caring (whether directly or indirectly). We draw attention to the inadequacy of public policy that does not incorporate an awareness of the demands of the everyday across the lifecourse, of which a spatial-temporal component should be fundamental. The authors propose a caringscape perspective as a basis for both future research and policy developments and conclude that an enhanced recognition of the fluidity and praxis of caring and gender is necessary to support the evolving roles of parents, especially mothers who combine caring and working.

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Great expectations: a systematic review of the literature on the role of family carers in severe mental illness, and their relationships and engagement with professionals

As community care has become embedded in the UK as in much of the western world more responsibility for psychosocial care has been placed on family carers. A systematic review of the literature about the role of family carers supporting a relative with severe mental illness and their relationships and engagement with professionals was carried out. The review aimed to find out what professionals expected of family carers and what family carers expected of themselves. Themes were identified: the distinct and personal nature of family caring, potentially effective family caring, barriers to effective caring and ways to overcome barriers. There were expectations that family carers were obligated to help support effective care, but that the rights to enable carers to fulfil these obligations were not consistently upheld. Barriers to upholding rights include: types of service provision, professional attitudes to communication and engagement with carers, and carer ability to cope. Recommendations for practice included: service provision aimed at including carers, more empathic communication by professionals, and a covenant between mental health services and people who depend on them. The idea of a covenant requires more discussion and research is needed into what is expected of family carers.

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Adjusting to the caregiving role: the importance of coping and support

Background: Although informal end-of-life care is associated with significant physical and psychological morbidity for caregivers, few interventions have been developed to meet these needs. This study aimed to identify existing coping and support mechanisms among informal cancer caregivers in order to inform intervention development.

Method: One-to-one semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home palliative care patients.

Results: Caregivers’ existing coping strategies included distraction, mental stimulation, emotional release, looking for the positive aspects of caregiving, and disengaging from stressful thoughts. The majority of the participants described the importance of support and understanding from family and friends.

Conclusions: The data suggests that feasible and acceptable interventions will be those that are targeted to caregivers to assist them in optimising existing coping strategies and support from family and friends.

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Supporting family carers in the UK: overview of issues and challenges

Support for family carers is currently a policy priority in both health and social care. However, despite the launch of the Carers' National Strategy there is a need for further innovation if services are to be optimally effective. This article identifies a number of issues and challenges for the future if family carers are to receive the type and level of support they need. It highlights the need to think more clearly about the intended outcomes of services supporting carers and about the range and type of interventions that should be provided if such outcomes are to be achieved.

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Silent, invisible and unacknowledged: experiences of young caregivers of single parents diagnosed with multiple sclerosis

The study's rationale: Most people diagnosed with multiple sclerosis (MS) choose to live at home without known consequences for their children.

Aims and objectives: To study the personal experience of being a young caregiver of a chronically ill parent diagnosed with MS.

Methodological design and justification: Phenomenology was the methodological approach of the study since it gives an inside information of the lived experience.

Ethical issues and approval: The study was approved by the National Bioethics Committee and reported to the Data Protection Authority.

Research methods: We explored in 21 interviews the lived experience of 11 young caregivers who had cared for single chronically ill parents, diagnosed with MS.

Results: The participants felt silent, invisible and unacknowledged as caregivers and received limited professional assistance. They were left to provide their parents with intimate physical and emotional care and support that was demanding, embarrassing and quite difficult while feeling unsupported, excluded and abandoned. Their caring responsibilities lead to severe restrictions in life as their parents' disease progressed and they lived without a true childhood; left to manage far too many responsibilities completely on their own and at a young age. At the time of the interviews, most of the participants had left their post as primary caregivers. They were learning to let go of the emotional pain, some of them with a welcomed partner. Most of them were experiencing a healthy transition and personal growth, existentially moving from feeling abandoned towards feeling independent. However, some of them were still hurting.

Study limitations: In choosing participants for the study a sampling bias may have occurred.

Conclusions: Health professionals are urged to provide information, support and guidance for young carers in a culturally sensitive way and to take on the leading role of helping and empowering children and adolescents in similar situations.

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Effectiveness of educational programs on reducing the burden of caregivers of elderly individuals with dementia: a systematic review

OBJECTIVE: This study's objective was to analyze the effectiveness of educational and support programs for caregivers on reducing their burden. 
METHOD: The method used was a systematic review. The following were searched; MEDLINE, LILACS, Embase, Cochrane, Web of Science, SciELO and CINAHL. 
RESULTS: Seven randomized clinical studies were included. These studies compared an educational program with standard care delivery, assessing the burden of caregivers through the Zarit Burden Interview. After the analysis of sensitivity, four studies were grouped in the meta-analysis showing a statistically significant reduction in caregiver burden among the participants of educational and support programs. 
CONCLUSION: The evidence obtained in this study suggests that educational and support programs have a positive impact on the reduction of caregiver burden when compared to standard care. Therefore, the inclusion of these programs in institutions providing care to the elderly is effective and should be encouraged. These programs should also share non-pharmacological management strategies for the behavioral and psychological symptoms of dementia.

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Providing Informal Care in Terminal Illness: An Analysis of Preferences for Support Using a Discrete Choice Experiment

Background: The trend for terminally ill patients to receive much of their end-of-life care at home necessitates the design of services to facilitate this. Care at home also requires that informal care be provided by family members and friends. This study investigated informal carers’ preferences for support services to aid the development of end-of-life health care services. Methods: This cross-sectional study used 2 discrete choice experiments to ascertain the preferences of carers supporting patients with different levels of care need, determined by the assistance needed with personal care and labeled High Care (HC) and Low Care (LC). The sample included 168 informal carers of people receiving palliative care at home from 2 palliative care services in Sydney, Australia. Data were collected in face-to-face interviews; carers chose between 2 hypothetical plans of support services and their current services. Data were analyzed with generalized multinomial logit models that were used to calculate the impact of each attribute on the probability of a carer choosing a service plan. Results: Preferred support included nursing services; the probability of choosing a plan increased significantly if it included nurse home visits and phone advice (P < 0.001). HC carers also wanted doctor home visits, home respite, and help with personal care (P < 0.05), and LC carers wanted help with household tasks, transport, and a case coordinator (P < 0.001). On average, both groups of carers preferred their current services, but this varied with characteristics of the carer and the caregiving situation. Conclusions:The most valued services are those that support carers in their caregiving role; however, supportive care preferences vary with the different circumstances of patients and carers.

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Positive and Negative Interactions With Health Professionals

Background: Empathic and informative interactions with health professionals are important for the well-being of people with cancer. However, there is a dearth of research examining the construction and experience of interactions with health professionals from the perspective of informal cancer carers.

Objective: The aim of this study was to explore how cancer carers subjectively position their experiences of interactions with health professionals, in particular, their construction of experiences as positive or negative, and the perceived consequences of such interactions. Positioning theory is used to examine how the sociomedical construction of health professionals shapes carers' experiences of interactions with them.

Method: Semistructured interviews were carried out with 53 informal cancer carers across a range of cancer types and stages, analyzed using thematic decomposition.

Results: Carers positioned positive interactions as those involving health professionals who were warm and genuine, accessible and approachable, and who made carers feel accepted and comfortable. In the case of allied health professionals, the provision of a space for carers' cathartic release was also constructed positively. Negative interactions were positioned as those involving poor communication and a lack of empathy, poor or absent information provision, and absence of guidance about additional support.

Conclusions: Positive experiences with health professionals were positioned by carers as leading to feelings of empowerment, value, and recognition, and negative interactions as leading to distress, anger, frustration, and feelings of isolation.

Implications for Practice: It is important for health professionals to be supportive of carers' needs, to communicate in an empathic manner, to be approachable and accessible, and to recognize carers needs and concerns.

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Improving support for older people looking after someone with advanced cancer

This briefing paper is about the findings and recommendations from a research project conducted at the University of Nottingham, with funding awarded by Macmillan Cancer Support. The project was set up to study the experiences and main support needs of older carers* looking after someone with advanced cancer and to facilitate the active involvement of carers in the research process.

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What's in a name? The implications of diagnosis for people with learning difficulties and their family carers

Diagnosis plays a significant role in the shaping of individual identities and the quality of life for people with learning difficulties and their family carers. Diagnostic labels are constitutive of peoples' lives, in that they bring forth pathology, create problemsaturated stories and construct careers as patients and cases. Disabled identities of people with learning difficulties remain largely ‘embodied’ and within the definitional control of professionals. Whilst the acquisition of a learning difficulty label can open doors to resources, it can also lead to disrespectful and dehumanising treatment, and the severe restriction of opportunities. This paper argues that a social constructionist perspective can offer a way of thinking about diagnosis that challenges the so called ‘facts' and ‘truths' that underpin and support it. Working in partnership with people with learning difficulties in relation to diagnosis requires professionals to relinquish power by resisting the ‘temptations of certainty’ associated with diagnostic practices.

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Informal carers and wound management: an integrative literature review

Objective:The consequences of informal care giving have been well documented in recent decades, and in many fields of illness and chronic disease, the role of informal carers has been recognised and investigated. Informal caregivers in the field of wound management and prevention have been largely unnoticed, despite the chronic nature of many wounds, the enduring nature of treatments and the impact on the physical and social environment; factors likely to have a significant impact on family and friends. The aim of this study was to consider what published evidence is available regarding the experience and role of informal caregivers in wound management or prevention.

Method: An integrated literature review was completed in October 2014 searching ESBCOhost database, Wound Management Association websites, and reviewing reference lists of accessed papers.

Results: A number of challenges were noted in accessing information about informal carers in relation to wound management and prevention. Most of these arose from the scarcity of studies for which informal carers was the primary focus. The available evidence suggests that informal carers have a role in wound management and prevention and that their involvement is likely to represent a noteworthy economic contribution to the wound management health-care team. Wound management was also determined to yield physical and psychological impacts for the carer. There was limited evidence of structured information, support or training for informal carers, which was flagged by carers as an area of need.

Conclusion: General conclusions about the burdensome experience and the valuable role of carers were the main interpretations possible from the evidence. More research which purposively and comprehensively examines the experience and role of informal caregivers is required. This knowledge would provide a foundation upon which interventions and support for informal carers and patients can be generated, which could further serve to enhance wound healing and the prevention of skin damage.

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The formal support experiences of family carers of people with an intellectual disability who also display challenging behaviour and/or mental health issues : What do carers say?

This article reports the findings of a literature review of research that has explored the support experiences of family carers of a person with an intellectual disability who displays challenging behaviour and/or has a mental health problem. The purpose of this review is to provide an overview of the reported experiences of family carers from recent research studies, about their own support. Having discussed the search strategy, definitions of challenging behaviour and mental health/illness are presented. Evidence concerning the needs of carers and the extent to which they are met is explored, and the need for consistency and good communication are highlighted. Conclusions are drawn and recommendations made for the development of future research and practice. 

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The craft of care: family care of relatives with advanced dementia

Family caregiving is attracting more attention from policy makers and service providers, but managing a chronic condition in the home is a very complex activity that usually remains invisible to health care professionals. The study's purpose was to identify strategies family caregivers used in the home to care for their relatives who have dementia. The author collected data from interviews with 18 caregivers and two health care professionals, and from participant observation in caregivers' support groups and homes. The author used constant comparison analysis and describes the Craft of Care, a category that emerged during qualitative analysis. Caregivers craft care by creating ruses in care, a language to communicate, and spaces and devices for caregiving. They sustain the humanity of the patient in the midst of a condition that tends to destroy it.

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Carers strategy: second national action plan 2014 - 2016

Summarises the Government's progress in supporting carers since the publication of Recognised, valued and supported: next steps for the Carers Strategy' in 2010. It provides an overview of evidence gathered over the last few years and explains the main achievements in recognising and supporting carers during that time. It focuses specifically on progress in four priority areas: early identification and recognition of carers; realising and releasing potential and enabling carers to fulfil their educational and employment potential; providing support to enable carers to have a family and community life alongside caring; and supporting carers to stay mentally and physically well. The report also identifies key actions for the Government for the next 2 years. Examples of initiatives and good practice are included throughout.

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Supporting informal caregivers of people with advanced cancer: a literature review

Informal carers are people who provide care without a specific professional role. They provide diverse caregiving supports including disease-related problems, side effects of treatment and psychosocial impacts. This paper reports on a comprehensive review of caregiving literature, focusing specifically on cancer caregivers. The paper presents five observations drawn from the literature in order to make recommendations about how caregivers of people with advanced cancer can best be supported. The observations are: 1) caregivers are a heterogeneous group; 2) they have unique needs that differ to the patient; 3) their role includes more than attending to physical caregiving tasks; 4) they may feel unable to take a break from the role and 5) they need their own support which may be beneficial to their capacity to continue in the caregiving role. Recommendations for how health professionals can assist in supporting caregivers in their role are discussed.

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The use of Talking Mats to support people with dementia and their carers to make decisions together

Policy guidelines insist that people with dementia should be involved in decisions about key life choices and transitions. However, as dementia affects both cognitive and communication difficulties, it becomes increasingly difficult to do this, and innovative and effective ways to support people with dementia and their carers to interact with each other are needed. This project, funded by Joseph Rowntree Foundation, examined if Talking Mats, a low-tech communication framework, could support family carers and people with dementia to discuss issues around daily living with each other. The fieldwork phase took place from September 2008 to May 2009. Eighteen couples (person with dementia and their family carer) from Scotland and the North of England were involved. The couples were visited in their own homes and asked to discuss together four topics (Personal Care; Getting Around; Housework; Activities) under two different conditions: (i) using the Talking Mats framework and (ii) using their usual communication methods (UCMs). After the interviews, each participant was asked separately to complete a short questionnaire (Involvement Measure), which included five questions to evaluate how involved s/he felt in each type of discussion and a final question to measure satisfaction with the overall discussion. The findings show that both people with dementia and their carers feel more involved in discussions about how they are managing their daily living when using the Talking Mats framework, compared with their UCM. They also feel more satisfied with the outcome of those discussions. The use of Talking Mats could result in increased well-being and positive adjustment to accepting increasing levels of care for people with dementia. In addition, it could improve the relationship between the person with dementia and family carers, if all involved feel that the views of the person with dementia and the family carer have truly been acknowledged.

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Clinical update. The management of nausea and vomiting in advanced cancer

Nausea and vomiting represent a significant problem in patients with advanced cancer which not only affects their quality of life but also the lives of informal carers. The application of nursing assessment tools, underpinned by a thorough knowledge regarding the physiology and aetiology of nausea arid vomiting in this group of patients enables nurses to plan and provide effective interventions, in collaboration with other members of the multidisciplinary team. This article describes the physiological basis of nausea and vomiting. Epidemiological data informs the subsequent discussion, which focuses on assessment in terms of identifying the problem and its cause(s), setting goals with the patient and his/her carers, planning appropriate nursing interventions to support medical interventions and evaluating clinical outcomes. Pharmacological and non-pharmacological interventions for nausea and vomiting are discussed.

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Scottish Household Survey analytical topic report: characteristics and experiences of unpaid carers in Scotland

This report discusses the characteristics and experiences of unpaid carers and those in receipt of unpaid care in Scotland, by analysing the Scottish Household Survey from 1999 to 2004. The aim of the report is to provide a clear picture of unpaid carers and identify those groups of carers who are in particular need of support in order to inform the development of Scottish Executive policy on carers.

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Primrose: an Alzheimer’s Society branch on wheels

James Feeney, Dawn John and Christina Maciejewski describe the work of the Alzheimer’s Society Cardiff Carers’ Bus

The Cardiff Carers’ Information Support and Wellbeing bus, also known as Primrose, was launched in April 2007. It is designed to be an Alzheimer’s Society ‘branch on wheels’, and to support carers of people with dementia in a holistic way. The Primrose bus visits 16 different sites each month, including leisure centres, church grounds, shopping centre car parks, and community centres, and aims to break down the barriers which lead to service non-use. The front of the bus offers a cosy place for carers to sit, have a cup of tea, and chat on a one to one basis. They can also access a wide range of books and leaflets giving details on local services. The rear of the bus has been converted into a complementary therapy treatment space where reflexology, Indian head massage and other treatments are carried out by qualified professionals. The article describes the benefits of offering these complementary therapies and the positive feedback from service users.

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A systematic review of instruments related to family caregivers of palliative care patients

Support for family caregivers is a core function of palliative care. However, there is a lack of consistency in the way needs are assessed, few longitudinal studies to examine the impact of caregiving, and a dearth of evidence-based interventions. In order to help redress this situation, identification of suitable instruments to examine the caregiving experience and the effectiveness of interventions is required. A systematic literature review was undertaken incorporating representatives of the European Association for Palliative Care’s International Palliative Care Family Caregiver Research Collaboration and Family Carer Taskforce. The aim of the review was to identify articles that described the use of instruments administered to family caregivers of palliative care patients (pre and post-bereavement). Fourteen of the 62 instruments targeted satisfaction with service delivery and less than half were developed specifically for the palliative care context. In approximately 25% of articles psychometric data were not reported. Where psychometric results were reported, validity data were reported in less than half (42%) of these cases. While a considerable variety of instruments have been administered to family caregivers, the validity of some of these requires further consideration. We recommend that others be judicious before developing new instruments for this population.

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Family caregivers' distress levels related to quality of life, burden, and preparedness

Objective: Family caregivers (FCGs) caring for loved ones with lung cancer are at risk for psychological distress and impaired quality of life (QOL). This study explores the relationship between FCGs' distress, per the distress thermometer (DT) and FCGs' QOL, burden, and preparedness. The purpose is to identify types of problems unique to FCGs in cancer care.

Methods: Family caregivers of patients diagnosed with non-small cell lung cancer were recruited from an adult outpatient setting at a comprehensive cancer center. Questionnaires included demographic information, City of Hope QOL Scale-Family Version, Caregiver Burden Scale, FCG preparedness, and DT. Baseline data were utilized for this analysis.

Results: Of the FCGs (N = 163), 68% were spouses, 64% female, and 34% worked full-time. FCG age ranged from 21 to 88 years with a mean of 57 years. FCGs cared for patients with non-small cell lung cancer stage I–III (44%) and stage IV (56%). Psychological distress (DT mean = 4.40) was moderate. DT scores were highly correlated with seven of the eight explanatory variables. Secondary principal components analysis of the explanatory variables combined correlated variables into three constructs identified as self-care component, FCG role component, and FCG stress component. Simultaneous multiple regression of distress onto the three components showed they accounted for 49% of the variance in distress.

Conclusion: This exploration of FCGs' concerns associated with elevated distress scores, as measured by the DT, helped identify three component problem areas. These areas warrant further psychosocial assessment and intervention to support FCGs as they care for the patient with cancer. Copyright © 2014 John Wiley & Sons, Ltd.

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Primary carers: identifying and providing support to carers in primary care

This report presents a series of recommendations for Government and Strategic Health Authorities, Primary Care Trusts, GPs and Primary Health Care Teams, with the aim of improving the way primary care services identify and support carers. The recommendations are based on conclusions which emerged from a nine-month primary care project for The Princess Royal Trust for Carers. The project aimed to find the most effective ways within primary care to identify carers and encourage them to use the services available. The project findings are the results of a mapping exercise of 36 existing and completed primary care support initiatives across The Princess Royal Trust for Carers network in England and Northern Ireland and a survey of carers conducted through a postal questionnaire sent to carers, as well as four focus group discussions with carers. The mapping exercise and survey have also enabled a review of good practice in the work of identifying and supporting carers in primary care and a further review of examples of best practice.

The results of the research will be used to inform the development of a number of The Trust’s carer support demonstration projects in primary care. A Good Practice Guide will also be produced to act as a toolkit for primary care project work by Carers’ Centres within The Trust’s network. This report covers the following: • Context of the project: carers and the caring relationship, legislation and guidance to provide support to carers and the role of primary care. • Summary results of the mapping of primary care projects in The Princess Royal Trust for Carers network.• Analysis of a survey of carers and related extracts from focus group discussions from four areas where there is an existing primary care project. • Review of good practice in identifying and supporting carers. • Recommendations in the form of checklists for GPs and Primary Health Care Teams, for Primary Care Trusts and for the Government and Strategic Health Authorities

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Effect of stroke on family carers and family relationships

The effects of stroke on families are considerable. Family members may struggle to adapt to a care-giving role, and relationships between stroke survivors and those closest to them are often altered by the illness. This article provides an overview of the effects of stroke on family dynamics and identifies interventions to support stroke survivors and their families during this difficult time.

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Who's going to care?

This chapter explores the provision of care and considers possible future developments and the challenges around provision. We begin with a discussion of human resources, posing the question of whether the UK can satisfy the growing demand for carers, both informal and professional. We specifically examine the different types of carer: the self-carer, informal carers and professionals – social carers, nurses, and doctors, and the implications for health and social care policy and consider the implications for these carer roles in society. We also look at current policy on care in the UK. 

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Reconsidering the term 'carer': a critique of the universal adoption of the term 'carer'

This critique of the term ‘carer’ argues that, although developed as a result of well-intentioned and socially-engaged research, it fails the people with whom it is most concerned, that is ‘carers’ and those who are cared for. The paper considers the historical and political development of the term ‘carer’ before examining research in various ‘carer’-related settings in the United Kingdom, namely mental health, physical and intellectual impairment, cancer and palliative care and older adulthood and dementia. The article concludes that the term ‘carer’ is ineffective and that its continued use should be reconsidered. This conclusion is based on the consistent failure of the term ‘carer’ as a recognisable and valid description of the relationship between ‘carers’ and those for whom they care. Furthermore, use of the term may imply burden and therefore devalue the individual who is cared for and in this way polarises two individuals who would otherwise work together. Consequently, this commentary suggests that descriptions of the caring relationship that focus on the relationship from which it arose would be both more acceptable and useful to those it concerns. Furthermore, a more accessible term may increase uptake of support services currently aimed at ‘carers’, therefore inadvertently meeting the original aims of the term, that is, to increase support for ‘carers’.

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MonAMI: Mainstream on Ambient Intelligence. E-inclusion Living Scaled Field Trial Experience in Spain

The MonAMI project was aimed to investigate the feasibility of the deployment of open platforms for Ambient Asssited Living (AAL) services provision and to test user acceptance and the usability of the services. The services were designed to give support in the areas of environmental control, security, and leisure. The participants included elderly persons with disabilities, care staff and informal carers. The concept of the open platform proved to be satisfactory for the provision of the services. The usability of the technology was viewed positively and the overall result indicates that this system has the potential to prolong independent living at home for elderly people with disabilities.

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The impact of information and communication technology on family carers of older people and professionals in Sweden

Government policy in Sweden, as in other developed countries, pays increasing attention as to how best to support the family carers of older people. New and innovative means of support, such as information and communication technology, are emerging. This paper explores the perceived benefits of, and barriers to, information technology as a means of supporting family carers of older people. Following a brief overview of the care-giving literature, with particular reference to the Swedish context, interview and questionnaire data collected from 34 families who took part in the Swedish ACTION project are used to explore the role of user-friendly information and communication technology to inform and enable family carers of older people to exercise choice, to care more effectively and to work in partnership with professionals. Interview data from two groups of professionals that utilised ACTION are also examined to throw light on its potential benefits for both carers and professionals. Consideration is given to the barriers to using information technology, and to identifying those carers most likely to benefit. Areas for further development are the need for practitioners' education and a wider range of programmes to address carers' diverse needs. Clearly, lessons learned from the Swedish project have wider relevance, given that new forms of support are being developed in most technically advanced countries.

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The Choices Method: helping people take control of their mental health

Helping people to understand what mental illness is and means to people who are affected by it can be difficult, but a set of resources has been developed by a person with bipolar disorder to help address the problem. The 'Choices Method' consists of a series of boards covering a range of mental health conditions which are designed to promote a free exchange of feelings and information between those experiencing mental illness and those supporting them. The method has been independently tested by a UK university and has been found to improve learning and knowledge retention as opposed to other methods. Future projects include the development of a board game for young carers which targets bullying and a board game for people with dementia which charts a day in the life of a person with dementia and those who care for them.

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On-line information and registration with services : patterns of support for carers in England

Purpose – The paper aims to ascertain how local authorities and other services are responding to central government strategies to make support for family carers a priority.

Design/methodology/approach – A web-based audit of local authority public information for carers was undertaken (n=50). The sample covered different parts of England and different local authority types.

Findings – A small minority of local authority web sites mention that they operated Carers’ Registers. Overall local authorities offer different resources to carers, ranging from discounts in the local area to access to emergency card registration. Some use online information as a communication channel. Overall local authority online information for carers seems to be variable in quality, accessibility and purpose. We conclude that growth in the collection of information by primary care services in England risks duplicating some of the functions of, and problems with, local authority activities. Local commissioning should minimise confusion and make optimal use of carers’ information. Carers should not have to navigate confusing, variable, parallel systems and outreach is needed for those who do not use electronic media, such as some older carers.

Research limitations/implications – This was a small-scale study nested within a larger project. It is possible that the web sites we interrogated were atypical, although we did take steps to prevent this.

Originality/value – The study's strength lies in its originality of approach undertaking a specific audit of material that is publicly available and reflecting on a subject that has not previously been explored in the context of information for carers.

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Support for the families and carers of drug users: a review of the literature

This report seeks to review research and evaluation evidence with qualitative consultations to elicit views and experiences of service providers and users. It sseks to identify key principles and elements of effective practice possibly leading to models of service The approach adopts current work on treatment services and support for the families and carers of drug users follows this model.

Original report on Scottish Government website.

The role of dementia training programmes in reducing care-giver burden

Family care-givers play a vital role in the support of people with dementia. In addition to opportunity costs, care-giving has been linked to a wide range of negative outcomes, including psychological disturbance, physical health problems, relationship changes and social activity restrictions (Donaldson et al, 1997). Carers identify access to information and training as an essential requirement in their struggle to continue in the care-giving role (Blackwell et al, 1992). To what extent are these training needs currently met? Despite an undoubted demand, few training initiatives exist for informal carers, or indeed for formal home care staff, a deficiency which has prompted a European Union project to develop a training package for family carers of elderly people with dementia (O'Donovan et al, 1997; Turner & Street, 1999).

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Social Services and Well-being (Wales) Act 2014: part 3 code of practice (assessing the needs of individuals)

This code provides guidance to the Part 3 of the Social Services and Well-being (Wales) Act 2014, setting out a process for assessing the needs of an individual for care and support, or support in the case of a carer; a process of assessment that will apply to all people – children, adults and carers; and a process of review and re-assessment that will apply to assessments. Underpinning the changes introduced by the Act is the need for more effective arrangements that are used and understood by all practitioners in their work with individuals and to ensure that practitioners work with people to identify what matters to them, and identify their strengths and capabilities is central to the system.

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Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work

Informal caregivers are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well-being; on the other, helping others as a meaningful activity might increase their subjective well-being. Happiness ratings (as an indicator of subjective well-being) of persons whose involvement in informal caregiving, voluntary work and paid work ranged from none to full time were analysed using multivariate regression models, which also took into account levels of physical disability and socio-economic characteristics (age, sex, household composition, education level). The sample consisted of 336 informal caregivers and 1765 noncaregivers in the Dutch population. In line with the subjective well-being assumption, the results suggest that caregivers are happier than noncaregivers when they provide care for <6 hours a week; and in line with the burden assumption, the results show that providing care for more than 11 hours a week is associated with lower levels of happiness. Other results contradicted the burden assumption that combining caregiving with paid or voluntary work is associated with more time burden and less happiness. The result that combining caregiving with paid employment or volunteering is related to higher rates of happiness confirms the subjective well-being assumption. It is concluded that these cross-sectional results open ways to longitudinal research that can inform governments in the development of policies to support informal caregivers.

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Family care-givers: the role of the healthcare assistant

This second article on family care-givers will focus on how healthcare assistants (HCAs) can support such care-givers within a variety of care settings, including GP practices, healthcare centres, hospital departments, hospital wards and in the care-giver's own home. Suggestions for training of HCAs who are likely to work with family care-givers will be proposed.

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Electronic tracking for people with dementia who get lost outside the home: a study of the experience of familial carers

Purpose: The study aimed to elicit a description of GPS (global positioning system) tracking use in the care of people with dementia in domestic settings and to generate hypotheses about impact.

Procedures: Users were recruited through a commercial provider. Qualitative interviews with 10 carers were completed to generate an in-depth description of how the devices were used and the perceived impact. A questionnaire was administered to ascertain sample characteristics.

Findings: Most carers preferred to use tracking as a back-up to other strategies of management, particularly supervision by a carer and locked doors. In cases where the carers perceived the risk of harm from getting lost to be low, tracking was used to preserve the independence of the person with dementia. The carers reported that tracking gave them reassurance and also enhanced the sense of independence both for themselves and for the person with dementia. The poor reliability of the device was identified as a substantial limitation.

Conclusion: Larger studies are needed to assess the safety and clinical value of GPS tracking. These should explore the views of people with dementia. Assessment tools are needed to assess suitability. Occupational therapy can play a pivotal role in this process of intervention design, assessment and evaluation.

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Carers

Explores the importance of the Children Bill for both young carers and young adult carers in England and Wales. Scope of the Children Bill; Number of children and young people under 18 that are young carers, according to the 2001 census data; Reason many of the young adult carers preferred to seek support and information from the person who ran the young carers service when they are involved.

Self-efficacy and health-related quality of life in family carers of people with dementia: a systematic review

Objectives: This review aims to explore the role of self-efficacy (SE) in the health-related quality of life (QoL) of family carers of people with dementia.

Methods: A systematic review of literature identified a range of qualitative and quantitative studies. Search terms related to caring, SE, and dementia. Narrative synthesis was adopted to synthesise the findings.

Results: Twenty-two studies met the full inclusion criteria, these included 17 quantitative, four qualitative, and one mixed-method study. A model describing the role of task/domain-specific SE beliefs in family carer health-related QoL was constructed. This model was informed by review findings and discussed in the context of existing conceptual models of carer adaptation and empirical research. Review findings offer support for the application of the SE theory to caring and for the two-factor view of carer appraisals and well-being. Findings do not support the independence of the negative and positive pathways. The review was valuable in highlighting methodological challenges confronting this area of research, particularly the conceptualisation and measurement issues surrounding both SE and health-related QoL.

Conclusions: The model might have theoretical implications in guiding future research and advancing theoretical models of caring. It might also have clinical implications in facilitating the development of carer support services aimed at improving SE. The review highlights the need for future research, particularly longitudinal research, and further exploration of domain/task-specific SE beliefs, the influence of carer characteristics, and other mediating/moderating variables.

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Between disruption and continuity: challenges in maintaining the 'biographical we' when caring for a partner with a severe, chronic illness

Chronic obstructive pulmonary disease (COPD) is a progressive illness that changes the lives of patients and their spouses dramatically. The aim of this paper is to show how spouses of COPD patients integrate their tasks as informal carers with their role as spouses and the tensions and challenges involved in this. The study draws on qualitative interviews with spouses of COPD patients, recruited from the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. The spouses described their great efforts to re-establish normality and continuity in their everyday lives. Accomplishing this was a delicate process because they faced several dilemmas in this work. They balanced the need to sustain the independence and integrity of both parties against the need to ensure safety and deal with the progression of the illness. We propose ‘biographical we’ as a concept that can highlight the great effort spouses put into establishing a sense of continuity in their lives. In times when healthcare policy involves mobilising informal caregiving resources, an awareness of the complexity of caregiving relationships is crucial when developing appropriate support for informal carers.

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A systematic review of social support interventions for caregivers of people with dementia: Are they doing what they promise?

Objective: Social support interventions for caregivers of persons with dementia (PwD) are important because informal carers often rely on their social networks for support. This systematic review synthesises findings from research on social support interventions, and examines their methodological quality and effectiveness on caregiver social support and well-being variables.

Methods: A systematic literature search utilised five databases. Papers were selected when the primary aim of the intervention was to improve social support. Quality of papers was assessed by the Level of Evidence grade and the criteria list from the Cochrane Back Review Group.

Results: 39 papers were identified and classified into 4 social support intervention categories: befriending and peer support, family support and social network interventions, support groups, and remote interventions using the internet or telephone. Content, intensity, uptake, effectiveness and quality of interventions varied widely. In general, the level of evidence was low. Most studies measured effect on well-being variables, while few examined social support outcomes. Multi-component social support interventions were most effective. Evidence suggested, also a caregiver benefit from remote interventions. Generally, results were inconsistent; some papers demonstrated beneficial results, while others demonstrated no improvement on social support and well-being variables. Social support outcomes were more positively evaluated when qualitative outcome measures rather than quantitative measures were used.

Conclusions: Although multi-component social support interventionsmay improve caregiver well-being, there is insufficient evidence to conclude whether a change in social support is the underlying mediating factor. The inclusion, validation and operationalization of caregiver social support measures deserve more attention.

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Clinical digest. Profiling of young carers could lead to better support from health professionals

Caring for a chronically ill relative takes a physical and mental toll on young carers, suggests a study in Austria.

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The role of district nursing: perspectives of cancer patients and their carers before and after hospital discharge

The role of the district nurse (DN) is difficult to define. Knowledge about the perspectives of patients with cancer, and their informal carers, on the roles of DNs and community services is lacking. The aim of this study is to identify the roles of DNs and community services as perceived by patients with cancer and their carers before and after hospital discharge. Seventy-one pre- and post-discharge conversational interviews were conducted with cancer patients and carers, and analysed thematically. Some interviewees lacked knowledge about services, were confused about differential roles and/or held stereotypical views. Some failed to disclose needs to services, received insufficient support or experienced unnecessary and inconvenient visits. Patients with few or no physical care needs were surprised to receive DN visits. Those receiving personal care from agency carers expressed dissatisfaction. Cancer patients and carers may benefit from post-discharge/ongoing assessment by DNs. However, effectiveness could be inhibited by limited disclosure caused by confusion, stereotyping, negative experiences and ideas that other patients have greater needs. Information might diminish these factors but, first, services need to clarify their roles. Organization and delivery of personal care services varies locally and DNs provide personal care during terminal illness. Community services should perform intra- and interservice clarification before publicizing differential roles to cancer patients and carers. This might facilitate disclosure of need to DNs. Patient and carer needs for information on service roles, and patients’ preferred roles in self-care are under-researched.

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Going home to get on with life: Patients and carers experiences of being discharged from hospital following a stroke

Purpose. In this paper we aim to develop the understanding of what constitutes a ‘good’ or ‘poor’ experience in relation to the transition from hospital to home following a stroke.

Method. Semi-structured interviews were carried out with 20 people and 13 carers within one month of being discharged from hospital following a stroke. Interviews covered views of mobility recovery and support from therapy and services. Interviews were transcribed verbatim, coded and analysed in depth in order to explore the discharge process.

Results. Participants described models of recovery, which involved a sense of momentum and getting on with their life. Discharge was successful if: (i) This sense of momentum was maintained, (ii) they felt supported, and (iii) they felt informed about what was happening. Discharge was seen as difficult when: (a) Momentum was perceived to be lost, (b) people did not feel supported, or (c) they felt in the dark about the plans or their recovery.

Conclusions. The discharge experience could be improved by healthcare professionals understanding and exploring patients' individual models of recovery. This would allow professionals to: (a) Access patients concerns, (b) develop programmes addressing these, (c) correct misinterpretations, (d) keep people fully informed, and (e) share and validate the experience, to reduce their sense of isolation.

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Perception and significance of an assistive technology intervention the perspectives of relatives of persons with dementia

Purpose: The aim of this study was to examine relatives’ perception of an assistive technology intervention aimed at persons with dementia (PwDs) and their relatives, and to examine whether, and how, experiences of the intervention process differed between relatives valuing the intervention to be of high, and relatives perceiving it to be of low significance. Method: A total of 47 relatives of PwDs within the Swedish Technology and Dementia project were interviewed telephonically using a modified version of the Patient perspective on Care and Rehabilitation process instrument. A total of 46 participants were divided into two groups depending on whether they valued the intervention to be of great significance (GS group; N = 33) or of some/no significance (SNS group; N = 13). Results: Several aspects of the intervention were perceived as highly important, e.g. being shown consideration and respect, and having somewhere to turn. The results indicate that relatives in the GS group perceived certain aspects of the intervention process as highly fulfilled to a larger extent than did relatives in the SNS group. Conclusions: This study illustrates how process evaluations can be used to increase the understanding and to identify improvement aspects of interventions.

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Homeward Bound: Co-Designing the Pathway from Hospital to Home for Older People

Introduction and practice change: This project utilisied co-production methodology to enable health and social care practitioners, older people and their informal carers to work together to codesign an integrated care pathway from hospital to home. Aim and theory of change: The project aimed to improve the experience of older people transitioning from hospital to home. To achieve this aim the group co-designed a two-pronged service intervention: i. an admissions coordinator; and ii. discharge at home. Timeline: This has been a 20-month project, initiated in July 2013. Stage one involved an eightmonth scoping period, during which practitioners across Scotland contributed to the development of a resource that gives an overview of existing pathways (http://content.iriss.org.uk/hospitaltohome/). Stage two was spent integrating the experiences of older people, informal carers and health and social care practitioners from Tayside over a period of six months. The final stage was spent embedding the co-designed interventions in practice locally. Innovation, Impact and Outcomes: The Design Council’s Double Diamond Methodology was used to inform a co-production approach supported by service design methodology and tools. This was achieved by running creative and innovative monthly workshops supporting health and social care practitioners to work alongside older people and informal carers.

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The redefinition of the familialist home care model in France: the complex formalization of care through cash payment

This article investigates the impact of policy measures on the organisation of home-based care for older people in France, by examining the balance between formal and informal care and the redefinition of the initial familialist model. It focuses on the specific cash for care scheme (the Allocation personnalisée d’autonomie – Personalised allowance for autonomy) which is at the core of the French home-based care policy. The author argues that in a redefined context of ‘welfare mix’, the French public strategy for supporting home-based care in France is articulated around two major objectives, which can appear contradictory. It aims to formalise a professional care sector, with respect to the employment policy while allowing the development of new forms of informal care, which cannot be considered to be formal employment. The data collection is two-fold. Firstly, a detailed analysis was made of different policy documents and public reports, together with a systematic review of existing studies. Secondly, statistical analysis on home-based care resources were collected, which was not easy, as home-care services for older people in France are part of a larger sector of activity, ‘personal services’ (services à la personne). The article exposes three main findings. First, it highlights the complexity of the formalisation process related to the introduction of the French care allowance and demonstrates that formalisation, which facilitates the recognition of care as work, does not necessarily mean professionalisation. Second, it outlines the diversity of the resources available: heterogeneous professional care, semi-formal forms of care work with the possibility to employ a relative and informal family care. Finally, the analysis outlines the importance of the regulation of cash payments on the reshaping of formal and informal care and comments on its impact on the redefinition of informal caring activities.

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Supporting carers: A learning resource for community nurses

In 2013, as part of the Queen's Nursing Institute (QNI) Carers Project, the QNI asked the 4M Learning Network to test the need for a learning resource to enable community nurses to support carers' health and wellbeing needs. In order to measure the learning needs of community nurses, the QNI undertook a literature review (Laing and Sprung, 2013). The 4M team commenced with desk research and extensive consultation using an online survey and workshops across England. The outcomes of this consultation informed the development of an open-access online learning resource for community nurses, with modules covering different aspects of the nurses' role in relation to carers, as well as a comprehensive resource directory and e-workbook. This resource was launched in March 2014.

In response to the enthusiasm and positive feedback from the community nurses, two learning resources were launched in March 2015 for practice nurses and school nurses. An accompanying resource directory mobile application is currently being development and is due to be released in summer 2015. It should be noted that throughout the article, the term carers refers to informal carers, i.e. family or friends caring for a person at home; it does not refer to an employed care assistant or helper.

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Between worlds: the experiences and needs of former family carers

While the financial, physical and psycho-social burden for caregivers is recorded, less is known about the post-caring experience. The purpose of this qualitative descriptive study was to explore the experiences and needs of Irish former family carers in the post-caring/care transitions period. Former family carers were defined as family members who provided physical and/or social care to a family member with an illness or disability in the home for at least 6 months prior to nursing home/hospice placement or death. A total of 40 family carers were recruited from members of or known to voluntary care groups/associations in Ireland. Fourteen participants took part in a focus group discussion and 26 participated in one-to-one, semi-structured interviews, all of which were undertaken in 2010. The focus group discussion focused on gaining a broad understanding of the participants' post-caring experiences and the emergent themes formed the basis for the development of a semi-structured interview guide. Data from the focus group were analysed inductively using Creswell's qualitative analysis framework, while template analysis was the method of analysis for the 26 individual interviews. For the participants in this study, post-caring was a transition that comprised three, interrelated, non-linear, iterative themes that were represented as ‘loss of the caring world’, ‘living in loss’ and ‘moving on’ and symbolised as being ‘between worlds’. Transition was a complex interplay of emotions overlaid with economic and social concerns that had implications for their sense of health and well-being. This exploratory study begins to address the dearth of data on post-caring/care experiences, but further research is needed to inform support interventions to enable former family carers to ‘move on’.

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Choice of where and how you live: how families can create new solutions to a familiar problem

The White Paper Valuing People said the aim for people with learning disability should be choice of where and how you live. This is rarely the experience to date. A publication has been written for family carers, social workers and others who want to find out more about the various housing and support options for people with learning disabilities. It explains the choices, how to go about getting housing and what support people can find. Six individuals and their families allowed us to describe their different ways of creating housing and support arrangements. It was prepared by Nigel King and Sarah West of Housing Options for the Mencap City Foundation.

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Nursing support and caregiver strain

Objective. To examine the possible association between satisfaction with nursing support and the risk of caregiver strain in informal carers in four Basic Health Areas in Barcelona from 2001 to 2002. Method. An observational, descriptive, cross-sectional study was performed. Subjects were 65 informal carers of both sexes of individuals aged 65 years or older with chronic or terminal diseases, or dementia. Carer-related variables were: age, gender, family relationship with the patient, degree of burden, risk of abandonment, and satisfaction with nursing support. Patient-related variables were: age, gender, type the disease, and degree of dependency. To evaluate the degree of burden in the informal carer, the Zarit scale was used. Results. The mean age of informal carers was 60 years, and most were women (56; 86%). Informal carers had a mean score of 61.20 points on the Zarit scale (SD = 16.50; 95% confidence interval, 57.11-65.29). There were 42 (65%) informal carers at risk of caregiver strain (65%). No statistically significant differences were found between satisfaction of the informal carer and the risk of caregiver strain. Conclusions. The profile of the informal carer corresponds to women with a high level of satisfaction with nursing support and a high risk of caregiver strain.

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Is cancer care dependent on informal carers?

Over the past half century, medical care has become less institutionalised, more autonomous, equitable and less costly. This has led to a shift from hospital-based delivery to community care. This paper examines the experiences of Canberra-based carers following this shift using interview data from a longitudinal qualitative study of 32 informal carers of a spouse with cancer. Cancer patients experienced poorly coordinated care. When carers observed the effects of errors and miscommunication on patients, they felt compelled to coordinate patient care. Interview data suggest that informal carers of cancer patients are relied upon to manage patient care at home and in hospitals, but are not supported in undertaking this responsibility. This implies that carers should be a far more central focus in cancer care reform strategies.

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All in the same boat

Hampshire: Alzheimer Cafe UK – a new approach to support for people with dementia and their carers – has been launched in Hampshire. Kandy Redwood explains.

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Statutory guidance to accompany the Social Care (Self-directed Support) (Scotland) Act 2013

Statutory guidance on social care assessment for adults, children, young carers and adult carers in Scotland which explains who those duties are affected by the introduction of the Social Care (Self-directed Support) (Scotland) Act 2013. It provides guidance on each stage of the person's pathway through support, including: the provision of information, support and advocacy; assessment and eligibility criteria; the duty to provide choice; support planning; and the role of the NHS and combined budgets.

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How do proxies' perceptions of patients' pain, anxiety, and depression change during the bereavement period?

The retrospective approach in palliative care research provides valuable insight into death and dying, and the effectiveness of palliative care. The method involves collecting information from proxies (usually significant others) after the patient's death. This exploratory study investigates whether proxies' accounts differ during bereavement, and provides possible explanations for why discrepancies might occur. Thirteen bereaved family members were interviewed, at three to five months and seven to nine months after the patient's death, about the patient's pain, anxiety, and depression, using semi-structured interviews and the symptom rating scale from the Views of Informal Carers-Evaluation of Services (VOICES) interview. Analysis of VOICES ratings over time indicated consistency for anxiety, while pain and depression ratings were variable and, in many cases, less severe and less frequent with the passage of time. Qualitative analysis of proxies' interview transcripts revealed a number of categories and themes that could be explained within the psychological and palliative care literature. The findings suggest that timing is an important consideration when gathering information from proxies retrospectively.

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Rural dementia carers: formal and informal sources of support

Primary carers provide much of the day-to-day care for community-dwelling people living with dementia (PWD). Maintaining that contribution will require a more in-depth understanding of the primary carer role and the support needs that flow from that role. This study explored patterns of formal and informal support utilisation by people caring for a PWD in a rural-regional context. In-depth semi-structured interviews were conducted with 18 rural primary carers of a PWD and thematically analysed. Participant primary carers' almost total commitment to, and absorption in their role and their assumption of ultimate responsibility for the PWD's wellbeing meant that external social context, such as rurality, became less relevant. Carer networks effectively contracted to those key individuals who were central to supporting them in their caring task. External sources of support were tightly managed with strong boundaries around the provision of direct care to the PWD largely excluding all but professional providers. Primary carers are generally categorised along with other family and friends as informal care. However, in assuming primary responsible for the care and wellbeing for the PWD they effectively become the key care provider, suggesting that it would be productive in both research and practice to treat primary carers as key members of a care partnership alongside professional carers, rather than as adjuncts to formal care and/or another client.

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Development of a position document for home care - wound care

Introduction and description of care: The management of non-healing wounds in Europe has gone through a dramatic shift in the location of service delivery from hospital towards home care settings. As a consequence more wounds with complex pathological pictures due to untreated patient co-morbidities are treated at home. There are no guidelines available covering the subject of home-care wound-management from a clinical perspective as well as no recommendations of minimal requirement of providing best care and supporting the empowerment of informal carers and patients with non-healing wounds in the home-care setting. Methods and aim: Based on literature reviews in combination with expert opinions from across sectors and areas of expertise a document was elaborated to give an overview of the main current approaches to the organisation of wound care within home-care settings, to identify possible barriers, challenges and opportunities for providing modern, cost-efficient, interdisciplinary wound care. The document has been developed in an intersectoral collaboration across European countries and organisations between the Tissue Viability Society (UK), Initiative Chronische Wunden (Germany), HomeCare Europe and EWMA. Thus, the focus is interdisciplinary and not tied to a specific health care system. Conclusion and discussion: Describing recommendations and raising a debate of how to manage non-healing wounds at home is of crucial importance for healthcare professionals, - providers, companies and policy makers as there is a tendency in home care of going towards employment of non-registered nurses. The document underlines the importance, scope, and level of the appropriate skills and gives recommendations for the interdisciplinary set-up required for wound care in the home-care setting.

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'Pick and mix': supporting carers to have a break

The short break services provided by Heritage Care to help both people with learning disabilities and their carers is presented. The article explains how the introduction of personal budgets (including Individualised Service Funds) has enabled the organisation to develop more customised and flexible services. The organisation provides both residential and outreach services.

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Carers are not always seeking out the support they may need

'Hidden carers' refers to informal carers who may not recognise themselves as carers and so do not, or struggle to, access support. This may apply to carers of people with long-term conditions, such as heart disease, whose role involves more emotional work than practical tasks.

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Barriers to community support for the dementia carer: a qualitative study

Objectives: To understand how carers of dementia sufferers gain access to community support and to determine potential barriers for carers.

Design: Qualitative study using semi-structured interviews of carers after an Aged Care Assessment Team intervention.

Setting: Australian metropolitan Aged Care Assessment Team.

Subjects: 24 live-in carers of dementia sufferers.

Main outcome measures: Carers' subjective experience of sources of stress in their care of the dementia sufferer focusing on interactions with the general practitioner and formal community support agencies.

Results: Most carers suffered high levels of stress, mainly due to behaviour disturbances and care needs of the dementia sufferers. Problems with health care agencies were also reported by a majority of the carers to be contributors to their distress. General practitioners were perceived to have referred dementia sufferers late for community care, despite the carer having experienced difficulties for a considerable time period. Carers also complained that too little information was provided about the diagnosis of dementia, how to deal with problem behaviours and how to access support services before and after the assessment procedure.

Conclusions: Problems with the interaction between the carer and the general practitioner appear to be important in delaying access to appropriate support and information. Earlier recognition of carers' problems, the provision of better education and earlier access to support services may lessen the degree of stress experienced by carers. Copyright © 2000 John Wiley & Sons, Ltd.

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Supporting rural carers : understanding the role of the voluntary sector

Findings from a small scale evaluation of one local voluntary sector carers' organisation in the north of England are used to discuss the commissioning of carers support services in rural areas. The issues raised match closely those identified in the new national strategy for carers both in terms of analysis of need and suggested responses. Respite in order to facilitate 'time out' and personalisation of services through a dedicated support officer emerge as the most important elements of service delivery from the carers' perspective. However, the evidence suggests that current provision is still too limited and that much remains to be done to support carers in their role more effectively. [Abstract]

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A comparative study of stress and unmet needs in carers of South Asian and white adults with learning disabilities

People with learning disabilities have high dependency needs and high prevalence of physical, psychological and social morbidities. Some studies have shown that South Asian and white populations have a similar prevalence of learning disabilities and related psychological morbidity (McGrother et al, 2002), although other studies have shown an increased prevalence of severe levels of learning disabilities in the South Asian population (Emerson et al, 1997). The aim of this study was to compare stress levels and unmet service needs in informal carers of South Asian and white adults with learning disabilities.A sample of 742 informal carers was selected from the Leicestershire Learning Disability Register. Data on carers' and subjects' demographic details, stress levels and unmet service needs were analysed and compared using chi‐square tests and logistic regression analyses. Substantial differences were observed between the two groups. Carers of South Asian adults with learning disabilities reported significantly higher levels of care provision and unmet needs. Major stress was reported in 23% of carers. This was more common in carers with poor health, in those caring for younger adults, carers of adults with psychological symptoms, and in those with an expressed need for moral support or respite care.Stress is common among informal carers of adults with learning disabilities and inequalities, in reported care given and unmet needs, exist between carers of South Asian and white adults. Practitioners need to be aware of factors associated with stress when assessing carers in this population.

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Caregiver Assessment of Support Need, Reaction to Care, and Assessment of Depression

The aims of this study were to: (a) identify New Zealand informal carers' support needs; (b) assess caregivers' depression; and (c) assess positive and negative aspects of caregiving. A sample of 287 carers from throughout New Zealand was recruited by advertisements in carer support organizations literature, in 2008. Data were collected using Centre for Epidemiologic Short Depression scale (CES-D10), Caregivers Reaction Assessment scale (CRA), and open-ended questions. Carer burden was significant (p ≤ .01) in the 60 to 69 age group. The relationship between CRA and CES-D10 in carers in the 50 to 59, 60 to 69 carer age groups; and 0 to 29, 60 to 69, 70 to 79, and 80 plus care recipient age groups were also significant. Mean burden was highest in the 50 to 59 age group (77/120) with depression mean highest in the 30 to 39 age group (14/30). Carers commonly discussed the adverse effects of caregiving on identity, lifestyle, health, and financial situation. Lack of information, poor respite care, and combining work with care were major frustrations. If the government wishes to successfully pursue initiatives allowing people to remain at home, more resources are needed to adequately support carers.

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Living with dementia: a systematic review of the influence of relationship factors

Introduction: Many people with dementia are enabled to live at home by the support of a close family member, who takes on the role of a carer. Considerable research has investigated the impact of caring for a person who has dementia. In early research, there was a tendency to overlook the experiences of the person with dementia and, in particular, the relationship between the two persons. This has now been corrected by a growing body of research on the relationships between people with dementia and the family members who care for them.

Method: Peer-reviewed publications on the influence of relationship factors in dementia caregiving were reviewed.

Results: The impact of dementia on the quality of relationships is examined, together with the impact of relationship quality on the experience of living with dementia. The different forms that relationships can take in the context of dementia are considered, and an integrative theoretical framework is proposed.

Discussion: A neglect of direct evidence from the person with dementia is identified, and possible ways of combating this are considered. Clinical implications are drawn with regard to supporting the carer, the person with dementia, and their relationship.

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Caring together: the carers strategy for Scotland 2010-2015

The Scottish Government and COSLA are determined to ensure that carers are supported to manage their caring responsibilities with confidence and in good health, and to have a life of their own outside of caring. We are pleased to have worked together with a range of interests, including Health Boards, the national carer organisations and carers in developing this strategy. It will build on the support already in place and take forward the recommendations of the landmark report, Care 21: The Future of Unpaid Care in Scotland. We recognise carers as equal partners in the delivery of care in Scotland and fully acknowledge carers’ expertise, knowledge and the quality of care they give. With appropriate support, especially support delivered early to prevent crisis, caring need not have an adverse impact on carers. Caring Together sets out 10 key actions to improve support to carers over the next five years. The focus is on improved identification of carers, assessment, information and advice, health and wellbeing, carer support, participation and partnership. In support of this agenda, the Scottish Government is pleased to announce an investment of a further £1 million in 2010-11 to voluntary sector organisations to provide more innovative short breaks provision in Scotland. The strategy sits within a wider context and reform agenda, with carers at the heart of this agenda. In order to achieve lasting change both for carers and the people they care for, we need to drive forward a range of policy developments, such as action to tackle health inequalities and household income. We need to do more to shift resources from institutional care to care at home, including support for carers. The Reshaping Care for Older People Strategic Delivery Plan, which is in preparation, will articulate the extent of the shift in resources within the system.

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Spousal experiences of coping with and adapting to caregiving for a partner who has a stroke: a meta-synthesis of qualitative research

Purpose: This meta-synthesis was conducted to explore qualitative spousal accounts of coping and adaptation to caregiving when their partner experienced a stroke. Method: Electronic databases were searched systematically and inclusion and exclusion criteria were applied. The meta-synthesis was conducted using guidance from Sandelowski and Barroso to extract salient data relating to coping and adaptation. Results: Twelve papers were identified for inclusion and seven themes resultant themes were extracted: Seeking information; Searching for own space and well-being; Suffering in silence; Putting one’s own needs aside; Adapting to a changed role; Social support and Hope and Optimism: instilling a positive focus. Conclusions: The findings suggested spouses adopt a range of adaptive coping strategies although several barriers to these were also identified and discussed in relation to a number of clinical implications. The limitations of this meta-synthesis were discussed, together with recommendations for future research.

Implications for Rehabilitation: 

  • Respite care for partner-carers is important for their well-being and there is a need to improve the availability and quality of such provision.
  • It is important to provide stroke-related information and training in practical care tasks, preferably before their partner is discharged home from hospital, in order to avoid leaving spouses feeling vulnerable and unprepared.

  • The positive adapting mechanisms identified within this review can be drawn on by clinicians to inform their interactions with stroke spousal carers and to advise them in strategies which have helped their counterparts.

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Supporting older people and carers

As a major provider of services to older people, Age UK is interested in what research tells us is known to work. In this book we've asked experts to write jargon-free summaries of the latest evidence they have of the most effective practice. We hope it will inform and further the debate about how services can enhance the lives of older people today. In his foreword Lord Filkin says, 'The key question is how to make these years as healthy, happy and meaningful as possible and improve the quality of later life whenever we can. This sounds a heroic, even utopian, ambition but this excellent Age UK publication makes crucial points about how to realise this vision. It tells us that service designers and providers should listen to what older people say they want and value, and co-design services with them, rather than doing things to them. We should also need to recognise the huge diversity among older people, and make the best use of the evidence of what works best.' 'Services for Older People - What Works' is a valuable and accessible guide to current best practice in the care and support of older people. It makes essential reading for service providers, commissioners, and others who fund or deliver services for older people.

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Caregiver burden : A clinical review

Importance  Caregiver burden may result from providing care for patients with chronic illness. It can occur in any of the 43.5 million individuals providing support to midlife and older adults. Caregiver burden is frequently overlooked by clinicians.

Objectives  To outline the epidemiology of caregiver burden; to provide strategies to diagnose, assess, and intervene for caregiver burden in clinical practice; and to evaluate evidence on interventions intended to avert or mitigate caregiver burden and related caregiver distress.

Evidence  Cohort studies examining the relation between demographic and social risk factors and adverse outcomes of caregiver burden were reviewed. Review of recent meta-analyses to summarize the effectiveness of caregiver burden interventions were identified by searching Ovid MEDLINE, AgeLine, and the Cochrane Library.

Results  Risk factors for caregiver burden include female sex, low educational attainment, residence with the care recipient, higher number of hours spent caregiving, depression, social isolation, financial stress, and lack of choice in being a caregiver. Practical assessment strategies for caregiver burden exist to evaluate caregivers, their care recipients, and the care recipient’s overall caregiving needs. A variety of psychosocial and pharmacological interventions have shown mild to modest efficacy in mitigating caregiver burden and associated manifestations of caregiver distress in high-quality meta-analyses. Psychosocial interventions include support groups or psychoeducational interventions for caregivers of dementia patients (effect size, 0.09-0.23). Pharmacologic interventions include use of anticholinergics or antipsychotic medications for dementia or dementia-related behaviors in the care recipient (effect size, 0.18-0.27). Many studies showed improvements in caregiver burden–associated symptoms (eg, mood, coping, self-efficacy) even when caregiver burden itself was minimally improved.

Conclusions and Relevance  Physicians have a responsibility to recognize caregiver burden. Caregiver assessment and intervention should be tailored to the individual circumstances and contexts in which caregiver burden occurs.

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A comparison of carers needs for service users cared for both in and out of area

Purpose – This paper describes an ongoing process of engagement with carers of people with intellectual disabilities currently being monitored by an out of area service for both carers of people placed both in area and out of area within a local Mental Health Learning Disabilities team in South London.

Design/methodology/approach – Using a series of consultation events, carers were asked to participate in a free dialogue which focussed on everyday issues for carers. This included financial implications of caring, knowledge of care pathways/systems in care, carer's needs and expectations and the support they currently receive.

Findings – This paper highlighted a number of issues and concerns that carers face in their daily lives when supporting one or more people. These include lack of recognition, financial difficulties, lack of training and support.

Originality/value – This project offered a valuable insight into current carer perceptions and will help develop further discussion and promote greater engagement by services and mutual understanding with this often neglected group.

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Caring for Carers: Recognising, Valuing and Supporting the Caring Role

The article focuses on a strategy meant for providing support for carers across Northern Ireland. The strategy quotes census figures indicating that there are more than 185,000 unpaid carers in Northern Ireland, equating to about 11 percent of the population. Carers need some help and support to enable them to continue in their caring role. The strategy include the identification of those acting in a caring role, information for carers, support services, the special needs of young carers and training and employment.

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The use of telecare for people with chronic obstructive pulmonary disease: implications for management

Aim  To evaluate the telecare service offered by Home Care teams to patients with chronic obstructive pulmonary disease (COPD).

Background  The use of telecare aims to support older people in remaining independent at home, reducing hospital admissions and improving the quality of life for older people and their informal carers. In the redesign of managed care for people with COPD using telecare, an evaluation of the implementation process is necessary.

Method  A focus group with Home Care teams and social care staff was conducted. Six case studies identified by nursing staff were used to examine key issues relating to telecare implementation.

Findings  The experience and expectation in telecare, the usability of equipment, and changes in practice can impact on COPD care. Case studies highlight that the rapid access to care, an increased sense of personal safety and security, and the continuity of care are perceived as benefits. However, the equipment was perceived as not ‘user friendly’ and bulky.

Conclusion  It is important that any service redesign to include telecare is evaluated and targeted at its specific role.

Implications for nursing management  Partnership working has to be negotiated, and leadership roles include addressing tensions and motivation within the team.

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Bite-size guides to patient and public participation: guide 2: governance for participation

This guide sets out key principles to ensure that patient, carer and public voices are included in governance frameworks for commissioning and service development in the NHS and health care services. It also includes practical steps to put these principles in place and contains links to supporting material. The guide is based on a review of research, best practice reports and the views of stakeholders. It aims to support clinical commissioning groups and others to plan and deliver good patient and public participation. One of four guides developed by NHS England with their partners.

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To work or to care? Working women's decision-making

Recent changes in older people's public care services in Nordic countries in particular in Finland and Sweden are based on implicit expectations that family members will increase their involvement in care. In Nordic countries, the care of small children has been acknowledged to be a social matter that concerns gender equality and the work life participation of both men and women, while the situation of working carers of older people is much less acknowledged. This study addressed the question of how Finnish working women who give care to their older parents argue for and against their decisions of working and caring and the meaning of work and care in these decisions. Majority of the interviewees emphasised the importance of work and refuted the idea of leaving work for care. The decision not to leave work for care was justified with worker identity, commitment to work, having no innate skills to be a carer, availability of support services and other carers and financial necessity. On the other hand, a few interviewees brought forward their willingness to leave work which was justified by constructing care as meaningful and valuable activity as opposed to meaningless paid employment, and with the intensification of work, and with ageing. Lengthy argumentation and several discursive tools indicate that women anticipated moral blame for the decision of giving work primacy over care, but also for leaving work. Thus, working carers balance between contrasting expectations to care and to work.

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Internet interventions can meet the emotional needs of patients and carers managing long-term conditions

Experiencing and managing a long-term condition places heavy emotional demands on a patient or carer. We conducted disease-specific focus groups for patients or carers. We recruited adults with diabetes, heart disease or hepatitis C, parents of children with asthma or diabetes, and carers of people with Alzheimer's disease. Participants had sole access to a PC and were asked to use three Internet interventions, each for 30 min. We conducted 10 disease-specific focus groups in three areas of the UK, involving a total of 40 participants. Three main themes emerged from the data: dealing with negative emotions, boosting positive emotions and social support. Designers of Internet interventions should consider users’ emotional needs and how to meet these needs with every section or facility within an intervention.

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Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia : pragmatic randomised controlled trial

Objective To assess whether a manual based coping strategy compared with treatment as usual reduces depression and anxiety symptoms in carers of family members with dementia. Design Randomised, parallel group, superiority trial. Setting Three mental health community services and one neurological outpatient dementia service in London and Essex, UK. Participants 260 carers of family members with dementia.

Intervention A manual based coping intervention comprising eight sessions and delivered by supervised psychology graduates to carers of family members with dementia. The programme consisted of psychoeducation about dementia, carers’ stress, and where to get emotional support; understanding behaviours of the family member being cared for, and behavioural management techniques; changing unhelpful thoughts; promoting acceptance; assertive communication; relaxation; planning for the future; increasing pleasant activities; and maintaining skills learnt. Carers practised these techniques at home, using the manual and relaxation CDs.

Main outcome measures Affective symptoms (hospital anxiety and depression total score) at four and eight months. Secondary outcomes were depression and anxiety caseness on the hospital anxiety and depression scale; quality of life of both the carer (health status questionnaire, mental health) and the recipient of care (quality of life-Alzheimer’s disease); and potentially abusive behaviour by the carer towards the recipient of care (modified conflict tactics scale).

Results 260 carers were recruited; 173 were randomised to the intervention and 87 to treatment as usual. Mean total scores on the hospital anxiety and depression scale were lower in the intervention group than in the treatment as usual group over the eight month evaluation period: adjusted difference in means −1.80 points (95% confidence interval −3.29 to −0.31; P=0.02) and absolute difference in means −2.0 points. Carers in the intervention group were less likely to have case level depression (odds ratio 0.24, 95% confidence interval 0.07 to 0.76) and there was a non-significant trend towards reduced case level anxiety (0.30, 0.08 to 1.05). Carers’ quality of life was higher in the intervention group (difference in means 4.09, 95% confidence interval 0.34 to 7.83) but not for the recipient of care (difference in means 0.59, −0.72 to 1.89). Carers in the intervention group reported less abusive behaviour towards the recipient of care compared with those in the treatment as usual group (odds ratio 0.47, 95% confidence interval 0.18 to 1.23), although this was not significant.

Conclusions A manual based coping strategy was effective in reducing affective symptoms and case level depression in carers of family members with dementia. The carers’ quality of life also improved. Trial registration Current Controlled Trials ISCTRN70017938.

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Understanding social support for patients with cancer

This article considers some of the dimensions of social support that can impact on the quality of life of people with cancer, their carers and their family. The article concentrates on emotional support, information support and tangible support.

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The burden of informal care for Alzheimer's Disease: carer perceptions from an empirical study in England, Italy and Sweden

Dementia of the Alzheimer type and related disorders greatly impact not only on the lives of sufferers but also on their unpaid informal carers, who usually are spouses or children. Carers are more likely to suffer from stress, take prescribed medication and visit their physicians compared with non-carers (Burns and Rabins, 2000). Social isolation that can occur in caregiving may mean that carers may only come to the attention of formal support services when a crisis occurs and informal care arrangements break down (Wenger, 1994). Increasing our understanding of the burden on informal care, and how this is affected by the use of support services, may contribute to the future development of services. As part of a European project (Sassi and McDaid, 1999), an empirical study was undertaken to measure aspects of the burden borne by informal carers of people with probable Alzheimer's disease living in the community in England, Italy and Sweden. Qualitative data on the caring experience and its economic impact were [...]

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The oral health of people with intellectual disability participating in the UK Special Olympics

Background  Research on the dental health of people with intellectual disability has consistently reported more untreated dental disease, more extractions and fewer fillings than in the general population. This paper describes the oral health of participants at the 2005 Glasgow Special Olympics (SO), relating this to the general population studied in the 1998 UK Adult Dental Health Survey (ADHS) and to participants' age and region of residence.

Methods  Consenting SO participants were offered oral examinations which followed the standardized SO protocol plus an innovative soft tissue examination. Urgency of any treatment required was noted and reported to participants and carers. Three measures of good dental health – having 21 or more natural teeth, absence of fillings and having no obvious untreated decay – were compared across age groups, regions and with the general population. Logistic regression was used to control for age differences between regions.

Results  In total, 1021 oral examinations were completed. Older SO participants were more likely to have fewer than 21 teeth and to have fillings, untreated decay, gum inflammation and heavy plaque levels. In all, 28% of SO participants had 21 or more teeth, no fillings and no obvious decay. Those from the north, midlands and south regions of England had significantly more chance of good dental health so defined compared with participants from Scotland [ORs 1.67 (1.09, 2.67), 1.69 (1.12, 2.54), 1.99 (1.26, 3.16), respectively]. Compared with the general population surveyed in the 1998 ADHS study, SO participants were more likely to be free from fillings and obvious untreated decay, but fewer had 21 or more natural teeth among older age groups. Nine per cent were found to have soft tissue problems, and one in four of these required follow-up. Gum inflammation was common. Overall, 5% of participants were judged to require urgent treatment for dental or soft tissue problems and 40% to require non-urgent treatment. This rose to 9% and 66% respectively among those aged 35 years and over.

Discussion  The low prevalence of untreated decay and fillings among SO participants compared with the general population may be due to their being well supported by family and carers. The study identifies the vulnerability of the older participants to dental problems, and this may indicate greater difficulty maintaining surveillance as individuals age or informal carers become less able or available. Regional variations are similar to those found in the general population. The implications for the organization of care for this group are discussed.

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Personalised health and care 2020: using data and technology to transform outcomes for patients and citizens: a framework for action

A framework developed aimed to support staff, patients and citizens to make better use of data and technology and use it to transform outcomes for patients and carers. The framework considers what progress the health and care system has already made and what can be learnt from other industries and the wider economy. The proposals aim to help citizens, care professionals an carers to access to data, information and knowledge they need to make the right health and care choices; make the quality of care transparent; support care professionals to make the best use of technology; support innovation; and assure best value for taxpayers. It draws on evidence from a range of sources, including voluntary organsiations, patient organisations, and directly from service users.

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Comparing and contrasting the role of family carers and nurses in the domestic health care of frail older people

Care in the community has been constructed on the basis of professional support for carers who, as a result of community care policy that has released highly dependent people from residential care and long-stay wards, are carrying out a wide range of tasks, including complex health care activities. The present paper examines the health care activities currently undertaken by family carers and the way in which they work with, and are supported by, professional nurses in the home. It compares and contrasts the approaches of both groups to care-giving for this client group. The authors conclude by making some suggestions for improving the way in which family carers and nurses work together in the home.

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Messages for integration from working with carers

Purpose – The purpose of this paper is to explore the role of carers as coordinators of care in their own right. It outlines how statutory and voluntary agencies can work together to support carers in this role, yet also help them work towards personal outcomes to sustain their own quality of life. It also proposes that approaches to working with carers can reveal lessons for integration.

Design/methodology/approach – The research analysed data from focus groups and document analysis to examine how carers and professionals experienced two different approaches to engaging with carers: the Midlothian carer ' s assessment and VOCAL ' s outcomes focused approach. From this, several themes emerged which are relevant to the current debate on integration.

Findings – Carers were found to be key co-ordinators of care who play a role in the integration of services. Approaches to working with carers can better enable personal outcomes, and integrate carers as equal partners. In addition, improved integration between services can also improve outcomes for carers.

Research limitations/implications – Approaches to working with carers should be carer and outcome focused, and partnership working can mean that carers feel more empowered and included. This helps to achieve personal outcomes, as well as enhance integrated working between other services. However, differentiation between services might, in places, contribute to better outcomes for people.

Originality/value – This paper shifts the focus of integration to look the role of carers as equal partners, and also illustrates how statutory and voluntary services can work better together, while preserving their distinct identities.

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General practitioners and carers: a questionnaire survey of attitudes, awareness of issues, barriers and enablers to provision of services

Background: Approximately one in ten of the UK population are unpaid carers supporting a family member or friend who could not manage without their help, saving the UK economy an estimated £87 billion. This role is known to sometimes have a negative impact on carers and to require support both informally and from statutory services. General practice is a first point of contact for carers but research investigating general practitioners' (GPs') attitudes towards carers and awareness of issues facing carers is rare. This study therefore aimed to identify GPs' attitudes, awareness of issues, and perceptions of the barriers and enablers to provision of services.

Methods: Using a self-completion questionnaire distributed at a series of workshops, this study investigates GPs' attitudes to carers; awareness and knowledge of carers' issues; services offered in general practice and barriers to supporting carers.

Results: Seventy eight out of a total of 95 GPs (82% response rate) from a variety of areas in England completed the questionnaires. The GPs identified time, resources and lack of knowledge as barriers, but only 9% agreed with the statement that there is little support they can offer carers. However, nine in ten GPs (89%) feel they have insufficient training here and approximately half of them (47%) lack confidence that they are meeting carers' needs. Confidence in identifying carers is also low (45%). Issues that GPs would look out for amongst carers include emotional and physical health problems and financial and isolation difficulties. GPs specifically highlighted educational and isolation issues for young carers. Few services were described that targeted carers.

Conclusions: GPs recognise that they have an important role to play in supporting carers but would like training and support. Further investigation is needed both to determine how best to train and facilitate GPs and general practice teams in their role in supporting carers and to identify what carers need and want from general practice. Identifying carers' leads or carers' champions amongst practice staff is possibly one way forward. Given the proposed greater commissioning role for primary care, greater understanding here is particularly important.

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Development and validation of an instrument to measure the burden experienced by community health volunteers

Aims and objectives: To develop and validate a scale to measure the burden experienced by community health volunteers.

Background: Research demonstrates the burden experienced by informal carers is substantial. There is no available information about the burden placed on community health volunteers, nor is there a scale developed for the purpose of measuring their burden.

Design: An instrument development and psychometric analysis study was undertaken.

Methods: Exploratory principal component factor analysis was applied to investigate the internal structure of the new scale.

Results: The initial item pool derived from literature review and experts resulted in 44 items linked to volunteer burden. The final scale includes 20 items with a content validity index of 0·86 and Cronbach's alpha for test (0·82) and retest (0·77). The reliability coefficient of the test–retest results was 0·63 [95%-confidence interval = (0·44, 0·77)]. Principal component analysis identified five underlying factors: Factor 1 items are related to personal and family matters; factor 2 items are related to administrative issues; factor 3 items concern the community support; factor 4 items are related to organisational matters; and factor 5 items concern issues of adequate health promotion delivery.

Conclusion: The 20 item instrument designed to measure the burden on community health volunteers in Taiwan showed good internal consistency, content validity and construct validity. The findings infer that the scale may be an effective measure of the burden experienced by community health volunteers. Further testing of this scale within other countries that make use of community health volunteers is required to confirm the results.

Relevance to clinical practice: As volunteers play an important role in supporting the work of community health nurses, the new scale provides a means for nurses to assess volunteers' level of burden and develop interventions as required.

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Give me a break! Informal caregiver attitudes towards respite care

Background/objective: Because informal health care is now recognized to be indispensable to health care systems, different forms of respite care have been developed and publicly funded that supposedly alleviate caregivers’ perceived burdens and help prolong the care giving task. Nonetheless, the use of respite care services is low even among substantially strained caregivers. To throw light on this low usage, this paper explores the associations between attitudes towards respite care, characteristics of the care giving situation, and the need and use of respite care.

Method: The survey, administered to a sample of 273 informal caregivers, addressed caregiver, care recipient, and care giving situation characteristics, as well as the familiarity and use of respite care services. It also included a sub-set of 12 statements eliciting attitudes towards respite care from an earlier study [Van Exel NJA, De Graaf G, Brouwer WBF. Care for a break? An investigation of informal caregivers’ attitudes toward respite care using Q-methodology. Health Policy 2007;83(2/3):332–42]. Associations between variables were measured using univariate statistics and multinomial logistic regression.

Results: We found three caregiver attitudes, distributed fairly equally in the sample, that are apparently associated with caregiver educational level, employment status, health and happiness, as well as care recipient gender, duration and intensity of care giving, relationship, co-residence, need for surveillance, and subjective burden and process utility of care giving. However, the relation between attitude and familiarity with and use of respite care services is ambiguous.

Conclusions: Although further exploration is needed of the mix of Q-methodology and survey analysis, the overall results indicate that a considerable portion of the caregiver population needs but does not readily ask for support or respite care. This finding has important policy implications in the context of an ageing population.

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Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach

Background: This paper synthesises research evidence about the effectiveness of services intended to support and sustain people with dementia to live at home, including supporting carers. The review was commissioned to support an inspection regime and identifies the current state of scientific knowledge regarding appropriate and effective services in relation to a set of key outcomes derived from Scottish policy, inspection practice and standards. However, emphases on care at home and reduction in the use of institutional long term care are common to many international policy contexts and welfare regimes.

Methods: Systematic searches of relevant electronic bibliographic databases crossing medical, psychological and social scientific literatures (CINAHL, IngentaConnect, Medline, ProQuest, PsychINFO and Web of Science) in November 2012 were followed by structured review and full-text evaluation processes, the latter using methodology-appropriate quality assessment criteria drawing on established protocols.

Results: Of 131 publications evaluated, 56 were assessed to be of ‘high’ quality, 62 of ‘medium’ quality and 13 of ‘low’ quality. Evaluations identified weaknesses in many published accounts of research, including lack of methodological detail and failure to evidence conclusions. Thematic analysis revealed multiple gaps in the evidence base, including in relation to take-up and use of self-directed support by people with dementia, use of rapid response teams and other multidisciplinary approaches, use of technology to support community-dwelling people with dementia, and support for people without access to unpaid or informal support.

Conclusions: In many areas, policy and practice developments are proceeding on a limited evidence base. Key issues affecting substantial numbers of existing studies include: poorly designed and overly narrowly focused studies; variability and uncertainty in outcome measurement; lack of focus on the perspectives of people with dementia and supporters; and failure to understanding the complexities of living with dementia, and of the kinds of multifactorial interventions needed to provide holistic and effective support. Weaknesses in the evidence base present challenges both to practitioners looking for guidance on how best to design and deliver evidence-based services to support people living with dementia in the community and their carers and to those charged with the inspection of services.

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Self-help groups as mutual support: what do carers value?

The literature suggests that the United Kingdom, in common with Europe, North America, Canada and Scandinavia, has seen significant growth in single-issue self-help/mutual aid groups concerned with health and social care issues since the 1970s, but there is only ad hoc academic and policy interest in such groups in the United Kingdom. This article presents findings from a doctoral study with two self-help/mutual aid groups for carers in South-East England. The data are drawn from semistructured interviews with 15 active members which explored reasons for joining, benefits derived from membership, and perceived differences between support gained by membership and their relationship with professionals. Most group members had prior experience of voluntary work/activity, which influenced their decision to join, often prompted by a failure of the ‘usual’ support network of family/friends to cope or adjust to the carer's needs. Members reported personal gains of empathy, emotional information, experiential knowledge and practical information, based on a core value of reciprocity through peer support. It is this latter benefit that sets apart membership of self-help groups from groups supported by professionals who may not appreciate the scope and breadth of carers’ responsibilities, or of the importance of their relationship with the person for whom they care. In this way, self-help groups offered additional, but not alternative, ‘space’ that enabled members to transcend their traditional role as a ‘carer’. It is concluded that self-help/mutual aid groups, based on reciprocal peer support, offer a valuable type of resource in the community that is not replicable in professional–client relations. The findings have contemporary relevance given the raft of new policies which value the experiential knowledge built by both individual and collectives of carers.

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The state of social care in England 2004-05

Social care services support children and families in the community through a wide range of social work, child protection, early years, fostering and adoption and other services. Older people, people with learning difficulties, those with mental ill health and disabled people are supported by social work, home. Social care services aim to safeguard and support people of all ages to make the most of their opportunities.  People who use social care services, whatever their age, tell us they want to live independently, work, have friends, have a good education, be part of a family and to have choice and control in their lives. Many people use services because they are required to. Whatever the circumstances, people should be treated with dignity. In England, 1.7 million people use social care services delivered by 25,000 providers in the private, public and voluntary sectors. Around 1.6 million people work in social care, alongside an estimated five million unpaid carers. 

Professional backup

Alan Simpson explains how nurses can learn to support carers of people with mental health problems. 2 refs. [Introduction]

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Supporting distant psycho-educational activities with a bio-feedback device

Caregivers of patients with dementia mainly face the problems such as psychological pressure in a daily basis, lack of knowledge and/or training about caring the patients and lack of knowledge about the consequences of dementia in patients’ behavior. These issues reveal the demand both for the support and the training for caregivers. Following this direction, we developed a web based platform to provide distant support for caregivers who are not able to participate in face to face sessions. This platform integrates services (i.e. teleconferencing, content management, learning management) and tools, such as a bio-feedback device for stress awareness to support distance learning and psychological support of the caregivers. This paper presents this platform, along with preliminary encouraging results concerning its usability and its usefulness not only for the caregivers but also for the psychologists who are training and supporting them. 

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Family care-giving and decisions about entry to care : a rural perspective

The aim of this qualitative study was to explore rural family carers' experiences of the nursing home placement of an older relative. The study was undertaken in a large Health and Social Care Trust in Northern Ireland using a grounded theory approach. Purposive sampling was used to initiate data collection and thereafter theoretical sampling was employed. Semi-structured interviews were conducted with 29 relatives of nursing home residents and the resultant data were recorded, transcribed and analysed using constant comparisons. The software package, QSR NVivo, was used to facilitate data management and retrieval. Older people had deep attachments to their homes and entry to care was a last resort. Rural family carers had close relationships with health- and social-care practitioners and felt supported in the decision-making process. The choice of home was a foregone conclusion for carers who had a strong sense of familiarity with the nursing homes in their area. This familiarity was influenced by the relatively rural communities in which respondents resided and by an efficient ‘grapevine’, which seemed to thrive in these small communities. This familiarity, in turn, influenced the choice of nursing home, timing of the placement and responses of family carers. The findings indicate that issues such as rurality and familiarity warrant a more detailed exploration in future research on entry to care.

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How pharmacists can support carers

This article describes the range of medication-related activities that are undertaken by carers together with some examples of the types of problems that they experience. This background may assist pharmacists in developing services to support carers in their medicines management roles and thus contribute to government policy as outlined in its strategy for carers. 

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Respite care for people with dementia: the range of models for getting a break

Hilary Arksey and Claire Bamford report on the first stage of a two-year national study of respite care and short breaks for people with dementia and their carers

The authors report on the first stage of a two-year national study of respite care and short breaks for people with dementia and their carers, in which they identified the range of service models available in the UK. Models identified included: day care, host family day care, social events, interest and activity groups, home based support (including sitting services), adult placement schemes, specialist respite facilities, respite beds, short breaks and holidays.

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Making it clear and relevant: patients and carers add value to studies through research document reviews

Purpose – The National Institute of Health Research MHRN established the Feasibility and Support to Timely recruitment for Research (FAST-R) service in 2011, to provide rapid patient and carer feedback on research documents, prior to ethical review. The aims were to improve the feasibility of studies, to speed up regulatory processes and enhance study set up and completion. The purpose of this paper is to explore whether and how the FAST-R service benefits the review process.

Design/methodology/approach – An independent evaluator analysed the comments made by FAST-R members on 85 studies over the past 3.5 years. The evaluation team reflected on the nature of these comments and the implications for future practice.

Findings – The FAST-R members’ comments fell into seven categories relating to: the quality of the information, the informed consent process, care and protection of participants, practical arrangements for participants, data protection and confidentiality, recruitment and research design. Based on the evaluation team’s experience of research document review, some of these comments were similar to those made by ethics committees. In other cases, the FAST-R Panel provided a different kind of input by identifying concerns specific to service users and carers.

Practical implications – Patient/carer involvement in reviewing research documents brings added benefits to existing processes because their views are informed by their knowledge and experience. They are able to question assumptions and highlight concerns that people lacking their perspective might otherwise miss. These findings suggest that patient/carer involvement should form an integral part of ethical review, and that the FAST-R model might be usefully applied to other areas of health and social care research.

Originality/value – This original work adds value to the practice of patient and public involvement in research.

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Rethinking social care and support : what can England learn from other countries?

This Viewpoint, written by Caroline Glendinning at the University of York and David Bell at the University of Stirling, draws on the experiences of other countries to argue that social care is a collective, welfare state responsibility rather than an individual, private responsibility.

Other key points include: 

  • social care arrangements in many other countries are equal and universal: everyone is eligible regardless of wealth, and people with similar levels of disability receive care no matter where they live;

  • local government, English and UK government relationships and responsibilities need to change in order to reform social care arrangements.

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National care standards: hospice care

Outlines the national care standards for hospice care in Scotland. Contents: before using the support service, standards one to four; having confidence in your service, standards five to ten; getting the most out of life standards eleven to nineteen.

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Integration of adult health and social care in Scotland: consultation analysis report

In May 2012, the Scottish Government launched a public consultation to inform recommendations for legislation to support the integration of adult health and social care in Scotland. This report presents the views expressed by respondents to the consultation proposals. Scottish Ministers’ proposals for integration of adult health and social care, as described in the consultation document, are based on four key principles: health and social care services should be firmly integrated around the needs of individuals, their carers and other family members; there should be strong and consistent clinical and care professional leadership in the planning and provision of services; the providers of services should be held to account jointly and effectively for delivering improved outcomes; and services should be underpinned by flexible, sustainable financial mechanisms that give priority to the needs of the people they serve, rather than the organisations through which they are delivered. 

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Gender, caring and employment in Britain

Employment and social policies continue to be based upon a gender template that assumes women, especially mothers, are or should be natural carers. Invariably, policies that seek to promote women's entry to paid work do so by facilitating their management and conduct of caring work, thus reinforcing the gender template. In addition, contemporary debates around concepts of citizenship emphasise the obligation to paid employment but fail to tackle the gendered division of caring activities and organisation of care. Enhanced access to childcare merely recreates the gender template by promoting low paid jobs for women as paid carers who are predominantly providing care services for other women. The provision of unpaid paternity leave is unlikely to challenge the strong association between femininity, mothering and care work.

In this article we explore notions of caring, home and employment. It is argued that ambivalence exists amongst policy makers, employers, and society more generally, towards the gendered nature of caring and the implications of this for women, and men who wish to care, who are in paid employment. These are old issues and the authors consider why change in social and public policies is so slow. The authors argue that a consideration of gender and equality principles, currently largely absent from welfare and employment policies, and debates on notions of citizenship, should form the basis for the development of future strategies to support parents and children.

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‘It made me realise that I am lucky for what I got’: British young carers encountering the realities of their African peers

Despite a growing number of studies comparing the experiences of young carers in the global North and South, little has been done to explore young carers' representations of their global peers. In this paper we examine the reflections of British young carers after having visited an exhibition displaying photos and stories articulating the caregiving experiences of young carers in Zimbabwe and Kenya. We do this to explore the role of safe and transformative social spaces in facilitating positive identity constructions. We draw on the essays and workshop material of 19 British young carers as well as 8 follow-up interviews. A thematic network analysis of the data reveals that British young carers, upon being confronted with the experiences of African young carers, saw their African peers as more marginalised, with heavier duties and with less state support. Their responses echoed victimising representations of Africa as poor and ‘underdeveloped’. However, the exhibition material was balanced and also highlighted the strengths and agency of African young carers, which provided some of the British young carers with opportunities to reassess their own circumstances in a more positive way. We conclude that creating social spaces for young carers to reflect on self and others can contribute towards the development of positive young carer identities and resilience.

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Caring for family members with chronic physical illness: a critical review of caregiver literature

This article reviews 19 studies (1987–2004) on quality of life for family caregivers helping those with chronic physical illness. Here we explore the concepts of and instruments used to measure caregivers' quality of life. We were particularly interested in understanding stress-related variables and documenting factors influencing quality of life based on family stress theory. Findings show that various positive and negative terms equated with quality of life were used to measure them. Results indicate that stress-related variables as possible predictors influencing caregivers' quality of life include: patient and caregiver characteristics, stressors, stress appraisal, stress coping methods, and social support. Our recommendations touch upon applying theory for intervention, developing measurement, making operable the concepts for measuring, and the need for longitudinal and comprehensive study.

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The same as you? Partnership in practice agreements 2004-2007: national overview and next steps

One of the 29 recommendations of the 'The same as you?' review was that local authorities and health boards should draw up Partnership in Practice agreements (PiPs). The aim of this national overview report is to provide feedback on the key messages that emerge from a review of all of the 2004-2007 PiPs, taking account of additional evidence from other sources. Key themes identified are: health promotion and improving access to health, Local Area Coordination, carers, short breaks or respite, autism spectrum disorders, Direct Payments, day services, further education and employment, supported living and vulnerable adults. This report aims to highlight positive developments that can be shared to support improvement across Scotland, and to inform the next round of plans for 2007-2010.

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Burden on caregivers of people with schizophrenia: comparison between Germany and Britain

Background Burden on the relatives of patients with schizophrenia may be influenced not only by patient and caregiver characteristics, but also by differences in mental health service provision.

Aims To analyse whether family burden is affected by national differences in the provision of mental health services.

Method Patients with schizophrenia and their key relatives were examined in Germany (n=333) and Britain (n=170). Differences in family burden in both countries were analysed with regression models controlling for patient and caregiver characteristics.

Results Family burden was associated with patients’symptoms, male gender, unemployment and marital status, as well as caregivers’coping abilities, patient contact and being a patient’s parent. However, even when these attributes were controlled for, British caregivers reported more burden than German caregivers.

Conclusions National differences in family burden may be related to different healthcare systems in Germany and Britain. Support for patients with schizophrenia may be shifted from the professional to the informal healthcare sector more in Britain than in Germany.

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Communication changes and SLP services according to significant others of persons with aphasia

Background: Significant others are important to persons with aphasia. For several reasons they should be involved in speech-language pathology (SLP) services, including acquiring facilitating communicative strategies and receiving support. In order to further adapt SLP services there is a need to know the perceptions and views of the significant others. Little is known about how they perceive changes in communication as well as received SLP services and in what way they want to be involved in these services.

Aims: The study aimed to investigate which communicative changes significant others of persons with aphasia had experienced after a stroke event and to what extent these changes were experienced. A further aim was to describe the significant others' experiences of SLP services and their motivation to participate in these services. Finally, the significant others' experiences were compared in terms of sex, age, type of relationship, time since stroke onset, and type and severity of aphasia.

Methods & Procedures: An 80-item study-specific questionnaire was answered by 173 significant others of persons with aphasia living throughout Sweden (response rate 69%). Of these, 33% were male and 67% female. Mean age was 64.2 years (range 33–87 years) and 85.5% of the participants were a cohabiting partner to a person with aphasia.

Outcomes & Results: A total of 64% of participants perceived their conversations as being less stimulating and enjoyable compared with conversations before stroke onset. Aphasia was considered a substantial or very substantial problem by 64%. The participants took on an increased communicative responsibility, and 70% had changed their communicative behaviour in order to facilitate conversations. A total of 75% (n = 130) had met with the SLP of the person with aphasia. Of those, 63% perceived their own support from SLP services to be adequate; 87% considered language ability training as the most important SLP service. Type and severity of aphasia were especially related to the communicative experiences of the participants and their motivation to be involved in SLP services.

Conclusions: The substantial decrease from pre- to post-stroke regarding enjoyment and meaningfulness of conversations suggests the need to further improve SLP services in order to help the people in question communicate at an optimal level. We suggest that clinicians should put more emphasis on explaining the benefits and availability of different kinds of aphasia rehabilitation services, such as functional communication training and communication partner training in addition to language ability training.

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Prevalence, disability and need in adults with severe learning disability

Evidence from a variety of sources suggests that there has been an increase of around 1% per annum in the prevalence of learning disability (LD) in adults over the last 35 years, due mainly to increases in survival. This trend is likely to continue for at least another ten years. Ninety‐six percent of adults notified to the Leicestershire LD register have an estimated IQ below 50 or need supervision every day to remain safe. Three‐quarters have additional significant disabilities including behaviour problems, psychological symptoms, physical dependencies or epilepsy. In one quarter the behaviour problem poses a major challenge to the achievement of an ordinary life. Two‐thirds indicate a need for help from one or other specialist. Informal carers are actively providing care for nearly half the adults, but a quarter are not content with care‐giving. Carers Report 40% more limiting health problems than their counterparts in the general population, in particular depression in women and cardiovascular problems in men. The specific areas of unmet need among carers Reporting depression are for financial help, long‐term social support and medical advice. Resource allocation for this client group needs to be reviewed in the light of substantial and unrecognised increases in prevalence which are continuing to occur, and the need for long‐term support.

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Commissioning better outcomes for carers : and knowing if you have : a local needs and response audit support tool

We have been working together to take forward The National Carers’ Strategy, published in 2008 alongside the promotion of more personalised support and sustained independence. This paper is the fourth in a sequence of short reviews designed to stimulate debate and improve support for carers. It links closely to Commissioning for Carers [2009]. The focus of this paper is to help us all to tackle the following question: How will you, carers, and people more generally know if you have improved outcomes for people who give and receive care and support? It is a question not easily answered. This paper outlines an audit approach that we believe may help. It is a resource to be drawn upon alongside others; for example, those on the IDeA website. We also explore the potential of Outcomes Based Accountability models. We can also see some advantages in the use of model carer feedback resource materials, as a way of improving the systematic collection of information on outcomes. The paper points to the importance of Total Place and the need to link what we do to Joint Strategic Needs Assessments4 and wider partnership working. We have also made links to the current performance assessment framework in the Care Quality Commission’s Commissioner Assessment Guide5 . This framework will be changing from next year and we hope this paper will be seen as a contribution to its development.

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Dyadic relationship scale: A measure of the impact of the provision and receipt of family care

Purpose: This study evaluated the psychometric properties of the Dyadic Relationship Scale (DRS), which measures negative and positive dyadic interactions from the perspective of both the patient and the family caregiver. An important aspect of evaluating the DRS was that it be statistically sound and meaningful for both members of the dyad. Design and Methods: The study used a cross-sectional design. Survey packages were mailed to home health care patients and their family caregivers. The unit of analysis was the dyad, and exploratory and confirmatory factor analyses were conducted. We examined the reliability, discriminant, and concurrent validities of the instrument. Results: The data supported a two-factor DRS that included negative dyadic strain (patient α =.84; caregiver α =.89) and positive dyadic interaction (patient α =.86; caregiver α =.85). The analysis supported the DRS's construct, discriminant, and concurrent validity, as well as its reliability for both patients and family caregivers. Implications: Using the DRS to measure the impact of family care on positive and negative interactions inclusive of patients and caregivers can assist in identifying areas of difficulty and guide interventions to improve outcomes for both members of the dyad.

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Experiences and health care needs of older people with End Stage Renal Disease managed without dialysis in Thailand during the last year of life

BACKGROUND: There is a growing population of older patients with End Stage Renal Disease (ESRD) managed without dialysis in Thailand, and services have yet to be developed to specifically respond to the needs of this group. As a consequence this population are likely to have unmet needs with respect to health care and suffer from symptoms that could be better managed.

OBJECTIVE: This qualitative study explored experiences and health care needs during the last year of life among older people with ESRD, managed without dialysis, from the perspective of bereaved carers.

METHODS: A retrospective post-bereavement approach was adopted to collect qualitative interview data. Purposive sampling was used to select 12 bereaved relatives of older patients with ESRD, managed without dialysis, who had died in the previous 5-10 months. Semi-structured interviews were conducted. Data were digitally recorded, transcribed and analysed through framework analysis.

RESULTS: Four main themes were identified: symptom experiences, impacts of being managed without dialysis, symptom management, and health care needs and utilisation of services.

CONCLUSIONS: Findings confirmed patients' needs were not being met and identified the need to develop approaches to symptom management at home, health education, and psychological and spiritual support at the end of life.

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The coexistence of well- and ill-being in persons with multiple sclerosis, their caregivers and health professionals

BACKGROUND: Studies on emotional distress and health-related quality of life (HRQOL) broadened the traditional bio-medical focus in MS research, but little attention was paid to general well-being indicators.

OBJECTIVE: To investigate for the first time both ill-being and well-being dimensions in persons with MS (PwMSs), caregivers and health professionals, in relation to both health and life in general.

METHODS: A multi-center study assessed participants' depression (Beck Depression Inventory-II), HRQOL (Short Form-36), psychological well-being (Psychological Well-Being Scales), optimal experience (Flow Questionnaire), life satisfaction (Satisfaction with Life Scale), hedonic balance (Positive Affect and Negative Affect Schedule). Demographic and clinical information was also gathered.

RESULTS: Overall, 71 PwMSs, 71 caregivers and 26 professionals were enrolled (N=168). Compared to healthy populations, PwMSs reported higher depression, lower HRQOL and lower general well-being; caregivers presented higher depression and lower general well-being; professionals reported the best ill- and well-being profiles. However, after controlling for demographic differences in age and education, hierarchical regressions highlighted that, though PwMSs reported higher depression and lower HRQOL than caregivers and professionals, their general well-being substantially leveled off.

CONCLUSIONS: Well-being coexists with ill-being. It can counterbalance the negative effects of disease or caregiving, and its measurement could complement and support medical intervention. Copyright © 2013 Elsevier B.V. All rights reserved.

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Voices from the shadows: stories from people living with dementia

This training resource uses series of monologues from people with dementia and their carers to promote discussion and increase awareness of the problems they face. The monologues are brought to life by the actors Godfrey Jackman and Pam Lyne, using the words of the writers or speakers. A CD-ROM includes a set of facilitators' notes based on the Alzheimer's Society's interpretation of the films and their relevance to the support of people with dementia and their carers.

Freedom and Imperative Mutual Care Between Older Spouses With Physical Disabilities

This article explores mutual caregiving between older spouses aging with physical disabilities. Nine older couples, where both partners had lived long lives with physical disabilities, were interviewed as dyads about mutual caregiving. The couples not only had access to different kinds and degrees of formal support but also provided mutual care to each other in a variety of ways. Interview coding using grounded theory led to two overarching categories from which motivation for mutual caregiving could be understood. These categories were Mutual care as freedom and Mutual care as imperative. The results extend understanding about how older couples with disabilities attached meaning to their mutual caregiving, and why mutual care was sometimes preferable, despite the availability of other sources of help and despite practical difficulties of providing this help. These findings suggest that health care professionals need to be sensitive to the dynamics of the couple relationship and carefully explore the couple’s preferences for how formal support can best be provided in ways that honor and sustain the integrity of the couple relationship.

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Caring for adults in the EU: work-life balance and challenges for EU law

Unpaid carers of adults, as a group, have, until recently, been largely neglected by the EU. While a number of provisions of EU law – including anti-discrimination measures and protections for part time workers – may benefit (some) carers of adults in the workplace, the existing package of work–life balance regulation falls well short of a coherent approach to addressing the needs of this group. Growing concern about a crisis in social care across member states, linked to an ageing demographic, has recently focussed attention on inadequacies in the formal care sector; on the vital economic contribution of unpaid care; and on a projected rise in the need for care coupled with a decline in the availability of informal care as the population ages and family structures change. It has prompted interest both in the need to develop the formal care sector, with the opportunities this may present to create employment, and in the need to support ‘informal’ carers in the workplace. This paper explores the various policy drivers for EU regulation to support informal carers in the workplace and consider the potential difficulties in establishing a coherent legal response.

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An introduction to the mental health of older people: understanding later stage dementia

This learning object focuses primarily on the later stages of dementia and on managing the more significant or prominent challenges - and symptoms - associated with this level of dementia. The material aims to reflect, where possible, the experiences of people with dementia and their family carers. Many of the examples given are located in a care home setting although the issues are also very relevant to supporting a person with dementia in the community.

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Telecare to 2012: an action plan for Scotland

This Action Plan has been developed by the national Telecare Programme Board and builds directly upon the 2008-10 Telecare Strategy. It provides continuing strategic direction and support for Local Partnerships and other key stakeholders in the development and implementation of their telecare programmes. Compared with most other countries, Scotland is currently performing well in the development and implementation of telehealth and telecare services for its citizens. Around 19% of those aged 65 and over use community alarm systems, 3.5% enjoy more sophisticated social care packages and 1% benefit from a bespoke telehealth package. The next phase of development should focus primarily on actions which expand telecare as a mainstreamed service and integrate it with other provision and processes. 

Emotional and Tangible Reciprocity in Middle- and Older-Aged Carers of Adults With Intellectual Disabilities

Reciprocal benefits may exist in relationships between carers and their adult sons/daughters with intellectual disabilities, but the topic has not been widely studied. The present study investigated whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8). Bivariate correlations and hierarchical regression analyses assessed the relationship between tangible and emotional reciprocity and carer quality of life variables (physical and mental health, depressive symptomatology, life satisfaction) and carers' desire for an alternative residential situation of their son/daughter. Overall, more tangible and emotional support was given than received from their adult children. However, despite varying levels of intellectual disability and functional impairments of their care recipient, carers did report receiving considerable support. Relative disadvantage (i.e., giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health but also reduced desire for seeking an alternative residential situation for the person for whom they are caring. These relationships were attenuated after covariance analyses. Emotional reciprocity was not associated with any of the outcome measures. The results suggest that perceptions of reciprocity are relevant in caregiving for intellectual disability and may be an underappreciated asset in coping with caregiving.

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PEACEanywhere - Implementing the vision for integrated health and social care

Introduction: The ultimate Vision for Assisted Living is the provision of integrated health and social care, thus allowing health and social care professionals and carers to work in harmony to maximise the people's quality of life. PEACEanywhere one of the Projects under the auspices of the Technology Strategy Board Assisted Living Innovation Platform (ALIP2) sought to progress the vision towards implementation. The recently completed PEACEanywhere project built upon the outputs of the ALIP1 PEACE Project which by progressively incorporating functions proven in other domains aimed to provide a more seamless experience for Customer, Clinician and Social Care professionals and Informal carers alike when moving between the Telehealth, Telecare and Social and Community Care domains (which in England are administratively separated) to allow them to work in harmony to maximize the quality of life of older people.

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myShoes - the future of experiential dementia training?

Purpose – The purpose of this paper is to discuss the use of virtual reality (VR) for experiential learning in dementia training. People have different perceptions and understanding of what it is like to live with dementia, particularly those that are new to dementia care, whether in a professional capacity, or as a friend or family member. Arguably the most powerful way in which to enhance understanding is to give people a glimpse of what living with dementia might be like.

Design/methodology/approach – The myShoes project aimed to create a resource that would augment a virtual environment and expose the user to an experience that gives them a sense of what living with dementia might be like. The resource was created using the latest VR and game development software. A sample group of students from a mixed range of health professions tested the resource providing in depth feedback on its immediate impact and ideas for further development.

Findings – Notwithstanding the limited sample on which the simulation has been tested, carefully designing the activities and constructing a learning space that allows for reflection on being placed temporarily in another person’s shoes, appears to have enabled students to think beyond ‘treatment, to considering how the person might feel and altering their approach accordingly.

Research limitations/implications – This is a pilot study. More research using VR as a training resource is planned.

Practical implications – The study will support educational training, particularly that which uses virtual reality for clinicians and carers.

Social implications – The adoption of a VR approach to training formal and informal carers has potential to enhance empathy and improve holistic care of people with dementia.

Originality/value – The myShoes project adopts a novel approach to simulating the effects of dementia for training purposes.

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It's everybody's business: care and support for the 21st century

The Right Care, Right Deal coalition combines three of the UK's largest charities working with older people, their families and carers (Counsel and Care, Carers UK and Help the Aged) to urge the Government to renew its vision for the future of social care in England. (See Related Link for the consultation document: The case for change: why England needs a new care and support system, 2008). This campaign document outlines the main issues needed to be tackled in order for there to be 'a new, personalised and better funded deal for social care, fit for the 21st Century'. The stories of six people who receive care and support form the basis of the report.

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Engage toolkit: supporting black and minority ethnic family carers

This resource aims to provide practitioners working with children and families affected by ill health and disability with information, resources and links to help develop and implement best policy and practice for services to identify and support black and minority ethnic young carers and their families.

This site was originally funded by the Department of Health in order to provide an understanding of the needs of black and minority ethnic family carers and best practice support.

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Supporting family caregivers at the end of life: they don't know what they don't know

Even for patients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains patients at the end of life. The amorphous relationship between physicians and the families of patients at the end of life presents both challenges and opportunities for which physicians may be unprepared. Families play important roles in the practical and emotional aspects of patient care and in decision making at the end of life. At the same time, family members may carry significant burdens as a result of their work. Through the perspectives of the wife, daughter, and home care nurse of a patient who died from pancreatic cancer, we illustrate the range of family caregiver experiences and suggest potentially helpful physician interventions. We describe 5 burdens of family caregiving (time and logistics, physical tasks, financial costs, emotional burdens and mental health risks, and physical health risks) and review the responsibilities of physicians to family caregivers. Based on available evidence, we identify 5 areas of opportunity for physicians to be of service to family members caring for patients at the end of life, including promoting excellent communication with family, encouraging appropriate advance care planning and decision making, supporting home care, demonstrating empathy for family emotions and relationships, and attending to family grief and bereavement. In caring well for family caregivers at the end of life, physicians may not only improve the experiences of patients and family but also find greater sustenance and meaning in their own work.

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Government response to the House of Commons Health Committee Report on Social Care (Fourteenth Report of Session 2010-12)

On 8 February 2012, the House of Commons Health Committee published Social Care: Fourteenth Report of Session 2010–12 (HC 1583–II). The report followed an inquiry by the Health Committee on transforming care and support. This accompanying document to the Care and Support White Paper responds to each recommendation and conclusion of the Committees report. These are grouped by theme, setting out the actions being taken forward. Main themes covered are Integration; the Dilnot Commission; Quality; Personalisation; and Supporting Carers. The Committee’s conclusions and recommendations are also listed as an appendix.

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Mental capacity and deprivation of liberty: a consultation paper

This consultation paper considers how the law should regulate deprivations of liberty involving people who lack capacity to consent to their care and treatment arrangements. Article 5 of the European Convention on Human Rights guarantees the right to personal liberty and provides that no-one should be deprived of their liberty in an arbitrary fashion.

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The needs of carers of people with multiple sclerosis: a literature review

People with multiple sclerosis depend heavily upon their families and other informal carers as they receive limited support from health-care professionals or health-care services, Adopting the carer role results in a life-changing experience, which may bring rewards and challenges to the carer. This paper reviews the research addressing the experiences of carers of people with multiple sclerosis published between 2002 and 2007 building upon an earlier review. The literature suggests that carers have needs across various domains and that spouses/partners have particular needs. Much of the evidence has limited generalizibility although the geographical spread of the evidence indicates considerable consistency of need. The review describes ongoing carer needs which require supportive care and provides the basis for the development and testing of carer interventions for use by health-care, professionals.

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Huntington disease: families' experiences of healthcare services

Aim.  This paper is a report of a study of the perceptions of family caregivers regarding the availability and adequacy of health and social care services for their family member with Huntington disease, and to compare findings from these reports in United Kingdom and United States of America samples.

Background.  Huntington disease is an inherited neurodegenerative condition. Family members often take responsibility for care of relatives with long-term conditions. Studies have demonstrated there are both positive and negative outcomes for carers.

Methods.  During 2006 and 2007, respondents from the United Kingdom (n = 108) and the United States (n = 119) who were caring for a relative affected with Huntington disease completed the Community Health Care Services Scale to identify areas of concern and the extent to which specific issues bothered carers. Data were analysed using statistical tests including chi-square, t-tests and factor analysis. Results were compared between carers in the two cohorts.

Results.  Three main factors were derived: ‘community resources’, ‘individualized care’ and ‘knowledge of Huntington disease’. Carers had concerns about the knowledge of healthcare professionals providing care and thought that there were insufficient services to support them and the affected person. There were different challenges for carers when the affected person had a long-term neurodegenerative condition because these carers were also likely to have responsibilities for earning and caring for children.

Conclusion.  Comprehensive facilities and resources are needed to support families affected by long-term complex conditions. Healthcare professionals need to be aware of the health needs of carers as well as those of the affected person.

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Efficacy and experiences of telephone counselling for informal carers of people with dementia

Background: Informal carers of people with dementia can suffer from depressive symptoms, emotional distress and other physiological, social and financial consequences.

Objectives: This review focuses on three main objectives: To: 1) produce a quantitative review of the efficacy of telephone counselling for informal carers of people with dementia; 2) synthesize qualitative studies to explore carers’ experiences of receiving telephone counselling and counsellors’ experiences of conducting telephone counselling; and 3) integrate 1) and 2) to identify aspects of the intervention that are valued and work well, and those interventional components that should be improved or redesigned.

Search methods: The Cochrane Dementia and Cognitive Improvement Group's Specialized Register, The Cochrane Library, MEDLINE, MEDLINE in Process, EMBASE, CINAHL, PSYNDEX, PsycINFO, Web of Science, DIMDI databases, Springer database, Science direct and trial registers were searched on 3 May 2011 and updated on 25 February 2013. A Forward Citation search was conducted for included studies in Web of Science and Google Scholar. We used the Related Articles service of PubMed for included studies, contacted experts and hand-searched abstracts of five congresses.

Selection criteria: Randomised controlled trials (RCTs) or cross-over trials that compared telephone counselling for informal carers of people with dementia against no treatment, usual care or friendly calls for chatting were included evaluation of efficacy. Qualitative studies with qualitative methods of data collection and analysis were also included to address experiences with telephone counselling.

Data collection and analysis: Two authors independently screened articles for inclusion criteria, extracted data and assessed the quantitative trials with the Cochrane 'Risk of bias' tool and the qualitative studies with the Critical Appraisal Skills Program (CASP) tool. The authors conducted meta-analyses, but reported some results in narrative form due to clinical heterogeneity. The authors synthesised the qualitative data and integrated quantitative RCT data with the qualitative data.

Main results: Nine RCTs and two qualitative studies were included. Six studies investigated telephone counselling without additional intervention, one study combined telephone counselling with video sessions, and two studies combined it with video sessions and a workbook. All quantitative studies had a high risk of bias in terms of blinding of participants and outcome assessment. Most studies provided no information about random sequence generation and allocation concealment. The quality of the qualitative studies ('thin descriptions') was assessed as moderate. Meta-analyses indicated a reduction of depressive symptoms for telephone counselling without additional intervention (three trials, 163 participants: standardised mean different (SMD) 0.32, 95% confidence interval (CI) 0.01 to 0.63, P value 0.04; moderate quality evidence). The estimated effects on other outcomes (burden, distress, anxiety, quality of life, self-efficacy, satisfaction and social support) were uncertain and differences could not be excluded (burden: four trials, 165 participants: SMD 0.45, 95% CI -0.01 to 0.90, P value 0.05; moderate quality evidence; support: two trials, 67 participants: SMD 0.25, 95% CI -0.24 to 0.73, P value 0.32; low quality evidence). None of the quantitative studies included reported adverse effects or harm due to telephone counselling. Three analytical themes (barriers and facilitators for successful implementation of telephone counselling, counsellor's emotional attitude and content of telephone counselling) and 16 descriptive themes that present the carers’ needs for telephone counselling were identified in the thematic synthesis. Integration of quantitative and qualitative data shows potential for improvement. For example, no RCT reported that the counsellor provided 24-hour availability or that there was debriefing of the counsellor. Also, the qualitative studies covered a limited range of ways of performing telephone counselling.

Authors' conclusions: There is evidence that telephone counselling can reduce depressive symptoms for carers of people with dementia and that telephone counselling meets important needs of the carer. This result needs to be confirmed in future studies that evaluate efficacy through robust RCTs and the experience aspect through qualitative studies with rich data.

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Spousal Caregiving and Financial Strain Among Middle-Aged and Older Adults

We examine whether spousal caregivers face difficulties in meeting their basic household expenses compared to nonspousal caregivers and whether social support mechanisms ameliorate any financial strain from caregiving responsibilities. We use data for caregivers aged 45 and over drawn from a nationally representative, cross-sectional Canadian Community Health Survey-Healthy Aging (N = 5,067). Spousal caregiving is associated with a 35% increase in the likelihood of experiencing difficulties in meeting basic expenses compared to other types of caregiving. Each of social support mechanisms (affectionate, emotional/informational, and positive social interaction), singularly and combined, lessens financial strain from caregiving. Our findings suggest that spousal caregivers are particularly vulnerable because they have fewer resources to draw on for support and perform much more intensive care. Our results highlight the importance of developing appropriate policies and programs to support caregivers.

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A review of the NHS hospitals complaints system: putting patients back in the picture

There were more than 162,000 complaints about NHS care in 2012/13. Following the Francis report into Mid Staffordshire NHS Foundation Trust which highlighted that complaints are a warning sign of problems in a hospital, the Prime Minister and Secretary of State for Health, Jeremy Hunt commissioned a review to consider the handling of concerns and complaints in NHS hospital care in England. The review was co-chaired by Ann Clwyd MP for Cynon Valley and Professor Tricia Hart, Chief Executive, South Tees Hospitals NHS Foundation Trust.. The review received 2,500 responses, most of which described problems with the quality of treatment or care in NHS hospitals; but some were from people who had not complained, because they felt the process was too confusing or they feared for their future care. This report looks at how complaints about care in NHS hospitals made by patients, their carers and representatives are listened to and acted on by hospitals.

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Risk factors for burn-out in caregivers of stroke patients, and possibilities for intervention

OBJECTIVE: To identify which caregivers of stroke patients living at home experience the highest levels of strain and are at risk of burn-out, and to investigate how support for caregivers of stroke patients could best be organized, and when this support should be offered.

DESIGN AND SETTING: Caregivers of stroke patients were recruited in four regions of the Netherlands. A total of 212 caregivers were interviewed. Multiple stepwise regression analysis was performed to determine the effects of patient and caregiver characteristics, resources, coping strategies and duration of the caregiver role on caregiver strain, mental well-being and vitality.

SUBJECTS: The majority of the caregivers were female spouses. Their mean age was 64 years, and their socioeconomic status middle class. Stroke had occurred about 3.5 years ago on average.

MAIN OUTCOME MEASURES: The following main outcome measures were used: the Caregiver Strain Index, and two scales of the Short Form-36 to measure caregivers' mental well-being and vitality.

RESULTS: Severe cognitive, behavioural and emotional changes in the patient constitute the main risk factors for caregiver burn-out. Women, younger caregivers and caregivers in poor physical health were also identified as risk groups. Caregivers with high perceived self-efficacy, satisfied with social support, and frequently using the coping strategy confronting, experience less strain, higher mental well-being and greater vitality. Duration of the caregiver role does not influence caregivers' strain, mental well-being or vitality.

CONCLUSIONS: Women, younger caregivers, caregivers in poor physical health, and caregivers of patients with severe changes are at risk of burn-out. Support programmes should focus on self-efficacy, social support, and the coping strategy confronting. No specific moment could be identified at which support programmes should be offered.

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Social capital in a lower socioeconomic palliative care population: a qualitative investigation of individual, community and civic networks and relations

Background: Lower socioeconomic populations live and die in contexts that render them vulnerable to poorer health and wellbeing. Contexts of care at the end of life are overwhelmingly determined by the capacity and nature of formal and informal networks and relations to support care. To date, studies exploring the nature of networks and relations of support in lower socioeconomic populations at the end of life are absent. This qualitative study sought to identify the nature of individual, community and civic networks and relations that defined the contexts of care for this group.

Methods: Semi-structured qualitative interviews were conducted with 16 patients and 6 informal carers who identified that they had social and economic needs and were from a lower socioeconomic area. A social capital questionnaire identifying individual, community and civic networks and relations formed the interview guide. Interviews were audio-taped, transcribed and analysed using framework analysis.

Results: Participants identified that individual and community networks and relations of support were mainly inadequate to meet care needs. Specifically, data revealed: (1) individual (informal caregivers) networks and relations were small and fragile due to the nature of conflict and crisis; (2) community trust and engagement was limited and shifted by illness and caregiving; (3) and formal care services were inconsistent and provided limited practical support. Some transitions in community relations for support were noted. Levels of civic and government engagement and support were overall positive and enabled access to welfare resources.

Conclusion: Networks and relations of support are essential for ensuring quality end of life care is achieved. Lower socioeconomic groups are at a distinct disadvantage where these networks and relations are limited, as they lack the resources necessary to augment these gaps. Understanding of the nature of assets and limitations, in networks and relations of support, is necessary to inform interventions to improve end of life care for lower socioeconomic populations.

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Anxiety and depressive symptoms in caregivers of multiple sclerosis patients: The role of information processing speed impairment

Background: Multiple sclerosis (MS) patients have high rates of complications and disability, including cognitive impairment, that often, impact on caregivers' emotional health. Clarification may help identify improved supportive strategies for both caregivers and patients.

Objective: We aimed to analyse whether MS domain-specific cognitive impairment can influence the severity of psychiatric symptoms of MS caregivers.

Methods: Patients with definite MS (n = 63) and their corresponding caregivers (n = 63) were recruited. In addition, 59 matched controls were enrolled for establishing normative cognitive data. Each patient underwent a complete neuropsychological testing for cognitive impairment and thorough clinical assessment, including data of disability status (EDSS), affective and emotional symptoms (depression, anxiety, anger) and fatigue. Psychiatric symptoms of the caregivers were assessed with the Beck Anxiety Inventory (BAI) and the Beck Depression Inventory (BDI).

Results: In logistic regression analyses, even after controlling for other MS-related symptoms, cognitive deficits, namely impairment on Symbol Digit Modalities Test (OR = 8.03, 95% CI = 1.27–25.33, p = 0.027) and on the Paced Auditory Serial Addition Test (OR = 6.86, 95% CI = 1.07–21.97, p = 0.042), were significant and independent predictors of more severe caregivers' depressive symptoms.

Conclusions: Information processing speed impairment is independently associated with more severe depressive symptoms of caregivers of MS patients, thereby reflecting a further deterioration of family setting.

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Effective engagement in social work education

This good practice guide is based on research conducted in 2008, and commissioned to explore the extent of service user and carer involvement in the Higher and Further Education sectors in west and southeast Scotland. Through this guide it is hoped that good practice can be shared and lessons learned. This guide is a tool to support the effective engagement of people who use services and carers in social work education. It is evidence-based and applicable to educators working in the social care field and beyond including health, early years and childcare. The purpose of the guide is to progress the involvement of people who use services and carers in all aspects of social work education by demonstrating the range of opportunities for involvement and explaining the key elements of good practice.

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Valuing people: a New Strategy for Learning Disability for the 21st Century; a White Paper presented to Parliament by the Secretary of State for Health by command of Her Majesty March 2001

Describes the government's strategy for improving the life chances of people with learning disabilities. Covers issues such as improving service provision for children with learning disabilities; improving choice and control for people with learning disabilities; supporting carers; improving health care for people with learning disabilities; providing housing, employment and fulfilling lives; and assuring quality in services.

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Stress, distress and mucosal immunity in carers of a partner with fronto-temporal dementia

Objectives: This study investigates the psychological and physiological impact of caring for a partner with fronto-temporal dementia (FTD). Carers were expected to exhibit greater stress and poorer psychological well-being in comparison with non-carers, and suppressed mucosal immunity.

Method: Twenty-five carers and 36 non-carers completed standardised psychological assessments of perceived stress, psychological well-being, coping and social support. Levels of mucosal immunity were assessed in saliva samples collected over the 3 days of the study, alongside daily assessments of stress, arousal and mood.

Results: Informal carers as a group reported greater stress and poorer psychological well-being, but there was considerable variation, with some carers reporting better psychological functioning than non-carers. Immune levels were not suppressed in carers compared with non-carers; counter to hypothesis, there was a positive correlation between immunity and poorer psychological well-being.

Conclusions: This research suggests that caring for a partner with FTD increases distress and carers might benefit from psychological intervention. However, the variation in psychological well-being requires explanation. Furthermore, this first examination of mucosal immunity employing participants experiencing enduring stress suggests that, in contrast to previous research, enduring stress does not lead to suppression of mucosal immunity and may actually enhance it.

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Time spent on health related activities associated with chronic illness: a scoping literature review

Background: The management of health care, particularly for people with chronic conditions, combines the activities of health professionals, patients, informal carers and social networks that support them. Understanding the non-professional roles in health management requires information about the health related activities (HRA) that are undertaken by patients and informal carers. This understanding allows management planning that incorporates the capacity of patients and informal carers, as well as identifying the particular skills, knowledge and technical support that are necessary. This review was undertaken to identify how much time people with chronic illness and their informal carers spend on HRA.

Methods: Literature searches of three electronic databases (CINAHL, Medline, and PubMed) and two journals (Time and Society, Sociology of Health and Illness) were carried out in 2011 using the following search terms (and derivatives): chronic illness AND time AND consumer OR carer. The search was aimed at finding studies of time spent on HRA. A scoping literature review method was utilised.

Results: Twenty-two peer reviewed articles published between 1990 and 2010 were included for review. The review identified limited but specific studies about time use by people with a chronic illness and/or their carers. While illness work was seen as demanding, few studies combined inquiry about both defined tasks and defined time use. It also identified methodological issues such as consistency of definition and data collection methods, which remain unresolved.

Conclusions: While HRA are seen as demanding by people doing them, few studies have measured actual time taken to carry out a comprehensive range of HRA. The results of this review suggest that both patients with chronic illness and informal carers may be spending 2 hours a day or more on HRA. Illnesses such as diabetes may be associated with higher time use. More empirical research is needed to understand the time demands of self-management, particularly for those affected by chronic illness.

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Social Services and Well-being (Wales) Act 2014

Act outlining the reform of social services law in Wales which became law on 1 May 2014. Key aspects include making about improving the well-being outcomes for people who need care and support and carers who need support; to make provision about co-operation and partnership by public authorities with a view to improving the well-being of people; to make provision about complaints relating to social care and palliative care; and for connected purposes. Sections of the Act cover: needs assessment; charging and financial assessment; looked after and accommodated children; safeguarding; social services functions; co-operation and partnership; complaints representations and advocacy services.

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Support to family carers of patients with frontotemporal dementia

OBJECTIVES: To examine the provision of support to patients with frontotemporal dementia (FTD) and their family carers compared with patients with early onset Alzheimer's dementia (AD) and their carers, and the carers' satisfaction with the support. METHOD: Data came from 60 dyads of patients with dementia and their principal family carers, 23 subjects with frontotemporal dementia and their 23 carers, and 37 subjects with early onset Alzheimer's disease and their 37 carers. RESULTS: Patients with a frontotemporal dementia diagnosis were significantly more frequently offered stays in nursing homes (p = 0.04). Carers of patients with frontotemporal dementia were significantly less satisfied with the provision of information about the disease compared with carers of early onset Alzheimer's disease patients (p = 0.05) and were significantly less satisfied with counseling and follow-up advice (p = 0.05). CONCLUSION: Changes of personality in patients with frontotemporal dementia may be the major reason why they were offered more stays in institutions. These family carers tend to be less satisfied with the provision of support they received from the specialist health service compared to carers of Alzheimer's disease patients, and are in need of more, and other forms of support.

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Challenging behaviour and learning disabilities: independent living

People with severe learning disabilities sometimes use behaviour that is said to be challenging, in order to communicate. This film illustrates that, with good support, people with challenging behaviour and severe learning disabilities can be enabled to enjoy independent, fulfilling lives. It explains why some people display challenging behaviour, and it shows how consistent, personalised support can reduce or prevent it. We see how vital it is to support family carers properly, and why people with challenging behaviour should not be excluded from services. The film shows how services and families can work together to improve the lives of people with behaviour that challenges.

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Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study

Objectives To understand the perspectives of people with severe chronic obstructive pulmonary disease (COPD) as their illness progresses, and of their informal and professional carers, to inform provision of care for people living and dying with COPD.

Design Up to four serial qualitative interviews were conducted with each patient and nominated carer over 18 months. Interviews were transcribed and analysed both thematically and as narratives.

Participants 21 patients, and 13 informal carers (a family member, friend, or neighbour) and 18 professional carers (a key health or social care professional) nominated by the patients.

Setting Primary and secondary care in Lothian, Tayside, and Forth Valley, Scotland, during 2007-9.

Results Eleven patients died during the study period. Our final dataset comprised 92 interviews (23 conducted with patient and informal carer together). Severe symptoms that caused major disruption to normal life were described, often in terms implying acceptance of the situation as a “way of life” rather than an “illness.” Patients and their informal carers adapted to and accepted the debilitating symptoms of a lifelong condition. Professional carers' familiarity with the patients' condition, typically over many years, and prognostic uncertainty contributed to the difficulty of recognising and actively managing end stage disease. Overall, patients told a “chaos narrative” of their illness that was indistinguishable from their life story, with no clear beginning and an unanticipated end described in terms comparable with attitudes to death in a normal elderly population.

Conclusions Our findings challenge current assumptions underpinning provision of end of life care for people with COPD. The policy focus on identifying a time point for transition to palliative care has little resonance for people with COPD or their clinicians and is counter productive if it distracts from early phased introduction of supportive care. Careful assessment of possible supportive and palliative care needs should be triggered at key disease milestones along a lifetime journey with COPD, in particular after hospital admission for an exacerbation.

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Debates in the House of Commons

The article discusses issues being debated in Great Britain's House of Commons in July 2010. Health Minister Paul Burstow observes that young carers of parents or siblings needed an integrated support programme from schools, social services and community groups. Education Minister Michael Gove stated that the number of teachers under the Teach First Programme will be doubled to 1,140 a year. Chris Leslie of Lab/Co-op, Nottingham East, asked that funding for mental health services for deprived children in Nottingham be maintained.

On the shoulders of children...young carers

There are about 32,000 young carers in the UK. Rebecca Coombes hears how a school nurse is helping one of them to cope.

Patient and carer needs following a cancer-related hospital admission: the importance of referral to the district nursing service

Background. Despite 30 years of research attention, discharge planning and district nurse (DN) referral remain problematic and few cancer-related publications exist. With shorter hospitalizations, discharged cancer patients and their carers may experience unmet needs for assessment, information and support. Although DN referral might enable patient/carer needs to be met, the DN role lacks clarity.

Aim. To investigate the needs of people with cancer, and their lay carers during discharge from hospital to home, and identify the role of DNs in meeting these needs.

Method. In this qualitative study, 71 pre- and postdischarge interviews were performed with cancer patients and (where possible) their carers. Predischarge interviews focused on expectations and postdischarge interviews on experiences of discharge and aftercare. Interview tapes were transcribed and analysed thematically.

Results. Interviewees anticipated few aftercare needs during predischarge interviews but described met and unmet needs during postdischarge interviews. Unmet needs of those referred and not referred to the district nursing service were similar. Patients and carers had unmet needs for psychological support related to nutrition. Carers, especially those not resident with and not related to patients, had informational needs. Even very elderly, ill and isolated patients felt that other people had greater needs than their own and many thought that DNs only performed physical tasks.

Conclusion. All cancer patients discharged from hospital might be referred to a DN for ongoing assessment of needs. However, to ensure optimal results, the DN role needs to be clarified and public perceptions altered. Further research on psychological aspects of nutrition and the needs of carers not resident with/not related to patients is necessary.

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Mental Health Act 1983: code of practice

This code of practice provides guidance to mental health professionals and other practitioners on how they should carry out their duties under the Mental Health Act. As well as providing guidance for professionals, the revised code of practice also guides patients, their families and carers on their rights. Chapters are grouped into seven areas: Using the Act; Protecting patient's rights and autonomy; Assessment, transport and admission to hospital; Additional considerations for the needs of specific patients; Care, support and treatment in hospital; Leaving hospital; and additional information for professional with specific responsibilities under the Act. Subjects covered in individual chapters include: the nearest relative; independent mental health advocates; mental capacity and deprivation of liberty; detention in hospital; police community treatment orders; guardianship; after care; and care programme approach. The code of practice will come into force on 1 April 2015, depending on Parliamentary approval.

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Caring for our future: reforming care and support: equality analysis

This document sets out how the Department of Health has met the Public Sector Equality Duty during policy development, in line with the five chapters of the White Paper. The chapters are: I am supported to maintain my independence for as long as possible; I understand how care and support works, and what my entitlements and responsibilities are; I am happy with the quality of my care and support; I know that the person giving me care and support will treat me with dignity and respect; and I am in control of my care and support. The analysis draws on available evidence, including the findings from the 'Caring for our future'  engagement and consultation with the care and support community. The final chapters summarises the main likely impacts of the reform of the care and support system on key equality groups (age, carers, disability, gender, race, religion, rural communities, sexual orientation and transgender, socio-economic status) and outlines the next steps for reform.

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Tools to measure quality of life and carer burden in informal carers of heart failure patients: A narrative review

Background: Heart failure is a complex cardiac syndrome prevalent in an older population. Caring for heart failure patients through the disease trajectory presents physical and emotional challenges for informal carers. Carers have to deal with clinically unstable patients, the responsibility of managing and titrating medication according to symptoms and frequent admissions to acute care. These challenges compound the demands on caregivers’ physical and psychosocial well-being. Alongside the negative impact of being a carer, positive aspects have also been demonstrated; carers describe feelings of shared responsibility of caring with professional carers and the reward of supporting a loved one, which creates a new role in their relationship.

Aim: This review explores the dimensions that impact caregiver burden and quality of life in carers of patients with heart failure and highlights both the negative and positive aspects of being an informal carer for heart failure patients.

Design: This review followed the processes recommended for a narrative review. Studies identified were selected systematically following the PRISMA guidelines.

Data sources: Searches were conducted using the Medical Subject Headings (MeSH) and keywords of the following search engines: MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, Applied Social Sciences Index and Abstracts (ASSIA), PsycINFO and Cochrane for literature published until January 2012.

Results: Quality assessment of the studies was conducted using quality indicators, and the studies included in this review were categorised as fair or good according to the criteria. Of the 1008 studies initially identified, 16 studies met the inclusion criteria. A thematic synthesis was undertaken, and the following themes were identified

  • Perceived carer control;

  • Mental and emotional well-being;

  • Types and impact of caregiving tasks;

  • Impact of patients’ physical condition;

  • Impact of age/gender/demographic factors;

  • Positive aspects of caregiving.

Conclusions: This review highlights evidence that informal carers supporting patients with heart failure face many challenges impacting their physical and mental well-being. The studies described provide an insight into the individual dimensions that make a carer particularly vulnerable, namely, younger carers, female carers and carers with existing physical and emotional health issues. Additionally, there are external influences that increase risk of burden, including New York Heart Association Score status of the patient, if the patient has had recurrent emergency admissions or has recently been discharged home and the level of social support available to the carer. A further finding from conducting this review is that there are still limited measures of the positive aspects of caregiving.

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Recording measurement of personal outcomes: part 3 personal outcome guidance: (Issued under the National Assessment and Eligibility Tool)

This guidance provides a framework for recording and measuring progress against personal outcomes for individuals during the care and support process. It applies to individuals who are eligible for a care and support plan and carers eligible for a support plan under the Social Services and Well-being (Wales) Act 2014. These personal outcomes should link to the 24 national wellbeing outcomes. This guidance provides information on defining, recording and measuring personal outcomes; information on measuring progress; and dealing with different interpretations of scoring and measuring. Examples of tools to measure progress against personal outcomes are included.

Original document (pdf) on socialcare.wales website.

Burden weighs heavily

A carer is in danger of collapsing under the weight of responsibility. This article looks at how social workers were able to provide her with the support to help her carry on.

A systematic review of the effectiveness of psychosocial interventions for carers of people with dementia

Historically, there have been many attempts to develop interventions to support the carers of people with dementia. To date the evidence of effectiveness has been limited. However, the success of psychosocial interventions for carers of people with schizophrenia has suggested the possibility of utilizing this approach. A systematic review was undertaken to assess the evidence of effectiveness for psychosocial interventions with carers of people with dementia. Thirty controlled trials that evaluated a psychosocial approach were identified. The overall methodological quality of these studies was poor, particularly with regard to sample size, and methods of random allocation. Individualized interventions that utilized problem solving and behaviour management demonstrated the best evidence of effectiveness. This approach is also closest to the effective model of psychosocial interventions currently in use with other severe and enduring illnesses. This suggests that there is scope for developing interventions, based more specifically on this model, for supporting the carers of people with dementia.

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Exploring coping strategies of carers looking after people with intellectual disabilities and dementia

Purpose – Carers play a vital role in looking after people with intellectual disabilities (ID). Caring role can be stressful and challenging in nature. Carers use various coping strategies to deal with stressors. The purpose of this paper is to explore coping strategies of carers looking after people with ID and dementia.

Design/methodology/approach – Qualitative methodology was used to explore coping strategies. Focus groups and face-to-face interviews were carried out. These interviews were transcribed and analysed using thematic analysis.

Findings – Nine interviews with carers (six paid carers and three family carers) and two focus groups with nursing staff looking after people with ID were carried out. Three key themes of “Narrative”, “Strategy toolbox” and “Compartmentalisation” emerged from analysis. Narrative and strategy took box were further subthemed. Carers had narratives about them and the person they look after. These “narratives” helped them to deal with day to day stressors. They also carried a “strategy toolbox”, which they used when they were in stressful situations. Compartmentalisation helped them to separate their personal life from work life as a carer.

Originality/value – Understanding carers’ coping strategies is important when planning services to help carers who play an important role in our society. Professionals can support carers to understand and improve their existing coping skills and help them to thrive in their role as carers.

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Family voices: life for family carers of people with intellectual disabilities in Ireland

Background: Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers.

Materials and Method: This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis.

Results: Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability of appropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support.

Conclusions: Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities to develop and be part of the community; and carers being shown respect, listened to and involved in decisions.

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Supporting South Asian carers and those they care for : the role of the primary health care team

Background: Demographic and socioeconomic changes have increased policy interest in informal carers. However, despite the multicultural nature of British society, most research in this field has been in majority communities. Aim: To explore the role of the primary health care team (PHCT) in supporting carers from British South Asian communities. Design of study: Qualitative study. Setting: Four South Asian communities in Leicestershire and West Yorkshire. Method: Focus groups and in-depth interviews were used to assess male and female carers, supported by a literature review. Results: Failure to recognise carers’ needs, gaps in service provision, and communication and language issues compromised carers’ ability to care. While some carers were positive about the PHCT role, the main weaknesses concerned poor consultation, PHCT attitudes towards carers, and access to appropriate services. Conclusion: South Asian carers’ experiences largely parallel those of others, but there are some issues that are distinct, namely, language and communication barriers, culturally inappropriate services, and implicit or explicit racism. The multi-ethnic nature of Great Britain requires that professional practice enhances the ability of minority ethnic communities to provide informal care. The findings underline the important role of the PHCT in ensuring that carers’ needs are taken seriously and that appropriate services reach them. Keywords: ethnic groups; cultural diversity; carers; primary health care team.

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Caring for children with learning disabilities: an exploratory study of parental strain and coping

Despite recurring concerns about the role and appropriate support of informal carers, little is known about the parental experience of caring for children with learning disabilities in Ireland. This study describes and analyses the nature and consequences of care and coping among parents of children (<16) with learning disabilities living in the Greater Dublin area. Participants ( n = 32) completed the Caregiver Strain Questionnaire and an adapted version of the Carers Questionnaire which assessed: care tasks/behavioural difficulties; caregiver attitudes; service provision; and coping strategies. Qualitative analysis examined factors affecting carers' ability to cope. Participants showed high levels of objective and subjective caregiver strain and most were receiving inadequate support. However, parents employed a range of strategies to help them cope more effectively. The qualitative data highlighted the difficulties and rewards of caregiving and the inadequacies of current service provision.

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Giving care to people with symptoms of AIDS in sub-Saharan Africa

In rural sub-Saharan Africa, most care for patients with AIDS is provided at home by relatives. Caring for those with AIDS is assumed to be a substantial burden, but little is known from the perspectives of those who provide the care. In this paper we use interviews with caregivers, supplemented with survey data from a larger study in rural Malawi, to investigate this issue. We focus on the caregivers’ diagnoses of the illness of their patients, the type and duration of the care they provided, the support they received from relatives and other members of the community, and the extent to which caregiving was experienced as an emotional, physical, and financial burden. Although none of the caregivers knew of a formal diagnosis and few explicitly named their relative's disease as AIDS, most appeared to suspect it. They described the illness using the typical symptoms of AIDS as they are locally understood and sometimes related the illness to their patient's sexual history. The care, typically given by close female relatives of the patient, was limited to the care that would be given to anyone who was seriously ill. What was striking, however, was the compassion of the caregivers and the attempts they made to provide the best care possible in their circumstances. For most caregivers, kin and members of the community provided social, moral, and physical support, as well as modest financial assistance. Caregiving was physically and emotionally demanding and confined the caregivers to their home, but most caregivers did not consider caregiving a problem primarily because the patients were close relatives. The financial impact of caregiving was typically modest because the caregivers had very little income and few possessions to sell.

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Uncovering an invisible network of direct caregivers at the end of life: A population study

Background: Most palliative care research about caregivers relies on reports from spouses or adult children. Some recent clinical reports have noted the assistance provided by other family members and friends.

Aim: This population study aims to define the people who actually provide care at the end of life.

Setting/participants: A South Australian study conducted an annual randomized health population survey (n=23,706) over a 7 year period. A sample was obtained of self-identifying people who had someone close to them die and ‘expected’ death in the last 5 years (n=7915). Data were standardised to population norms for gender, 10-year age group, socioeconomic status, and region of residence.

Results: People of all ages indicated they provided ‘hands on’ care at the end of life. Extended family members (not first degree relatives) and friends accounted for more than half (n=1133/2028; 55.9%) of identified hands-on caregivers. These people came from the entire age range of the adult community. The period of time for which care was provided was shorter for this group of caregivers. People with extended family or friends providing care, were much more likely to be supported to die at home compared to having a spousal carer.

Conclusion: This substantial network of caregivers who are mainly invisible to the health team provide the majority of care. Hospice and palliative care services need to create specific ways of identifying and engaging this cohort in order to ensure they are receiving adequate support in the role. Relying on ‘next-of-kin’ status in research will not identify them.

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Carers and the NHS

The huge role of unpaid family carers is outlined in this essay, together with examples of good practices by NHS organisations to support their needs. The authors point out that with declining NHS resources there will be even more reliance on family carers. 

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Hidden Child Workers: Young Carers in Zimbabwe

Drawing on an interview-based case study of young people caring for dependent adult members of their households in Harare, this paper connects the experiences of young carers in Zimbabwe to global forces—namely the HIV/AIDS pandemic and economic liberalisation. It is argued, firstly, that care-giving by young people is a largely hidden and unappreciated aspect of national economies which is growing as an outcome of conservative macroeconomic policies and the HIV/AIDS explosion. Secondly, that young people have a right to recognition of their work as work. Thirdly, while acknowledging that conceptualising childhood is problematic, there needs to be less emphasis on northern myths of childhood as a time of play and innocence and more attention on defending children's rights to work as well as to be supported in their work under appropriate circumstances. The articulation between global processes and the localised experiences of individual children as providers of care within the home contributes to efforts to re-introduce social reproduction as an important (but often missing) aspect of debates around globalisation. In addition, this article adds to the growing literature on the geographies of childhood while tackling the imbalance within that literature, whereby working young people and those of the global South are relatively neglected. Suggestions are offered in the conclusions for policy recommendations to recognise and support young carers in Africa, while calling for further research.

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Supporting frail older people and their family carers at home using information and communication technology: cost analysis

AIM:This paper describes a cost analysis of a home-based support service for frail older people and their family carers in two municipalities in West Sweden and using information and communication technology.

BACKGROUND: A key challenge facing nurse managers across Europe is an increasingly aged population, combined with reduced numbers of young adults of working age. New solutions are needed to provide quality, cost-effective community care services to frail older people and their family carers.

METHODS: A case study methodology involving five families was used, and included a detailed cost description of the technology-based service compared with usual services. Cost data were collected in June 2002. This work formed part of a larger project exploring the impact of a technology-based service known as, Assisting Carers using Telematics Interventions to meet Older Persons' Needs (ACTION). In addition to cost data, information was gathered on the quality of life of frail older people and their family carers, and the job satisfaction and work methods of nurses and other practitioners based in the community. The cost analysis comprised a description of the family and their caring situation, the perceived benefits of the telematic based support service and an assessment of its impact on the use of other care services. These analyses were carried out with the help of needs assessors who were known to the families, and nurses working in the ACTION call centre. All results were validated by the five participating families.

RESULTS: Cost savings were achieved in all cases, and the benefits to older people and their carers were also considerable. As a result of the cost analysis and overall evaluation data, ACTION has been implemented as a mainstream service in the municipalities involved.

CONCLUSION: Researchers, nurses, other practitioners and community care managers can work together with frail older people and their family carers to develop quality, cost-effective support services that reduce demands on staff whilst providing benefits to users.

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Caring for the carers

Estimates suggest there are 5.7 million carers in the UK, carrying out unpaid work valued at a massive 34 billion. The role is undefined and rarely chosen voluntarily. The carers and Disabled Children Act, which came into force in April 2001, gives carer the right to an assessment and local authorities the power to make payments and provide services direct to carers. The carers' Resource is an independent charitable company offering a direct point of contact for carers and professionals seeking information, advice, support, referral, representation and advocacy. 2 refs. [Summary]

How to stay afloat

Researcher Elinor Nicholas describes how support for carers could be improved even where resources are limited.

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A stress process model of family caregiver service utilization: factors associated with respite and counseling service use

This study examines whether caregivers' differential utilization of respite and counseling support services is associated with different situational stress processes. A multinomial regression analysis was conducted to compare respite users, counseling users, and those who used neither service, using data collected on a statewide random sample of 1,643 California caregivers providing assistance to individuals aged 50 or older. Compared with caregivers who used neither service, respite service users were more likely to have demanding care situations giving rise to physical symptoms of stress, and were more likely to use community services for the care recipient to augment their care. In contrast, counseling service users were more likely to be managing the meaning of their care situation by seeking out information about services and talking with a confidant about their situation, while coping with both emotional and physical symptoms of stress. Tailoring caregiver interventions to meet the support needs and coping strategies stemming from diverse caregiving situations and caregiver characteristics may increase the likelihood that those interventions will be effective in alleviating or preventing deleterious secondary stress frequently experienced by family caregivers.

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Parents and partners: lay carers' perceptions of their role in the treatment and care of adults with cystic fibrosis

Background.  Cystic fibrosis (CF) is the most common autosomal recessive genetic disease in Caucasian people, traditionally conceptualized as a condition whereby sufferers died in childhood. However, the current median survival age of 30 and a predicted median survival age of 40 for those born with the disease over the last decade ensure that families members will assist hospital staff with treatment and care well into most patients' adulthood.

Aims.  This study explores the perceptions and experiences of lay care-giving amongst parents and partners of adults with CF who were being treated at a specialist CF centre in England.

Methods.  Thirty-one relatives of adults with CF were interviewed in their own homes using an interview topic guide. All interviews were audiotape recorded and transcribed verbatim. Analysis of data was assisted by ATLAS-ti, a software package for qualitative research.

Findings.  Two main themes surrounding lay carers' role in treatment and care were identified. Firstly, the notion of lay carers giving ‘expert’ care, both in hospital and at home was recognized. Parents' expertise was greater than that of partners until the patient required intensive hospital interventions, when partner expertise increased. Secondly, the degree of lay carers' felt inclusion in the hospital consultation appeared to depend on the nature of their relationship with the patient and the patients' health state.

Conclusion.  Lay carers are routinely performing tasks for adults with CF that were once the remit of trained nurses. Families need higher levels of nursing and social support when certain treatments are used at home. Attention needs to be directed to how lay carers of adult patients can be included in hospital consultations.

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Evaluating automated goals for home care support

Purpose – The purpose of this paper is to evaluate an approach to automating goals for supporting home care, with a view to understanding user experience when defining such goals and hence identifying improvements that could be made to the approach.

Design/methodology/approach – The study was designed to answer the key research question of whether users can understand, formulate and relate to automated goals for home care. In order to do this, a fictional text-based scenario was used about a couple with care needs. This helped to explore the feasibility, acceptability and usability of goals to manage care at home. Face-to-face qualitative interviews were undertaken with ten participants with a background in social care: four social care professionals; one health care professional; one formal carer; one informal carer; and three end users.

Findings – Overall, participants were positive about being able to control the MATCH (Mobilising Advanced Technologies for Care at Home) system through the use of goals. The results from the participant interviews will be used to help guide potential improvements to the home care system. The main issue that emerged from the study is that it would be valuable to think in terms of outcomes as a higher level than goals. A second consideration is that it would be desirable to adopt terminology that can be understood by all stakeholders.

Research limitations/implications – The study has demonstrated that automated goals for home care have a useful role to play and can be successfully used by end users and carers. Although the range of participants in the study was limited, it has allowed confidence to be built in the approach and has identified useful pointers for future development.

Practical implications – With the evaluation and validation of the goal-based approach, it has encouraged the developers to make automated goals more widely available in future deployment of the home care system.

Social implications – The use of automated goals to support home care has been shown to be acceptable to end users and carers. This will allow future home care systems to offer more personal and better customised services to those receiving telecare.

Originality/value – The study provides a unique evaluation of the use of automated goals to support home care. Previous use of goals in the literature has been for highly technical applications, so their application to home care is novel and speculative. The study has demonstrated that the approach is viable, useful, and usable by end users and carers.

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Brief psychotherapy in Alzheimer's disease: randomised controlled trial

Although there is good evidence that interventions for carers of people with Alzheimer's disease can reduce stress, no systematic studies have investigated psychotherapeutic intervention for patients themselves. This may be important in the earlier stages of Alzheimer's disease, where insight is often preserved.

The aim was to assess, in a randomised controlled trial, whether psychotherapeutic intervention could benefit cognitive function, affective symptoms and global well-being.

Individuals were randomised to receive six sessions of psychodynamic interpersonal therapy or treatment as usual; cognitive function, activities of daily living, a global measure of change, and carer stress and coping were assessed prior to and after the intervention.

No improvement was found on the majority of outcome measures. There was a suggestion that therapy had improved the carers' reactions to some of the symptoms.

There is no evidence to support the widespread introduction of brief psychotherapeutic approaches for those with Alzheimer's disease. However, the technique was acceptable and helpful individually.

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Evaluation of the Scottish recovery indicator pilot in five health board areas

Report of evaluation of the Scottish Recovery Indicator (SRI) pilot in five health board areas of Scotland. SRI is a practice development tool for assessing whether mental health services are meeting service-users' needs for equality, social inclusion and recovery.

Original document from the Scottish Government website.

Accounts of disruptions to sexuality following cancer: the perspective of informal carers who are partners of a person with cancer

There is a growing body of research showing that cancer impacts upon the sexuality of informal carers in a couple relationship with a person with cancer. However, this research is primarily focused on partners of a person with gynaecological or breast cancer, within a framework where the physiological effects of cancer on sexual performance are the focus. We conducted semi-structured interviews with 20 informal carers in a couple relationship with a person with cancer, across a range of cancer types. The aim was to explore accounts of changes to sexuality and intimacy post-cancer, in the context of discursive constructions of sexuality and the caring role. Our findings show that partners’ sexual experiences were shaped by absence of desire in the person with cancer; the stress and exhaustion associated with caring tasks; the repositioning of the person with cancer as childlike or as an asexual ‘sick patient’; and the belief that there were expectations about ‘acceptable’ sexual conduct in the context of cancer caring. Carers accepted the diminishment of their sexual relationship, but expressed feelings of disappointment, anger and sadness about this loss. It is concluded that it is vital that support services are developed, so that couples may develop new sexual strategies, and cope more effectively with potential disruptions to their sexual and intimate relationship.

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A critical analysis of health promotion and 'empowerment' in the context of palliative family care-giving

Traditionally viewed as in opposition to palliative care, newer ideas about ‘health-promoting palliative care’ increasingly infuse the practices and philosophies of healthcare professionals, often invoking ideals of empowerment and participation in care and decision-making. The general tendency is to assume that empowerment, participation, and self-care are universally beneficial for and welcomed by all individuals. But does this assumption hold for everyone, and do we fully understand the implications of health-promoting palliative care for family caregivers in particular? In this study, we draw on existing literature to highlight potential challenges arising from the application of ‘family empowerment’ strategies in palliative home-care nursing practice. In particular, there is a risk that empowerment may be operationalized as transferring technical and medical-care tasks to family caregivers at home. Yet, for some family caregivers, a sense of security and support, as well as trust in professionals, may be equally if not more important than empowerment. Relational and role concerns may also at times take precedence over a desire for empowerment. The potential implications of ‘family empowerment’ are explored in this regard. ‘Family empowerment’ approaches need to be accompanied by a strong understanding of how to best support individual palliative family caregivers.

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Unlocking diagnosis: the key to improving the lives of people with dementia

A diagnosis of dementia gives a person access to treatment and support services and allows them to plan for their future. Yet it is still common for a person with dementia to live with the condition and never be given a formal diagnosis. The aim of this inquiry was investigate why this is the case, particularly exploring barriers to diagnosis and differences in the rates of diagnosis across the UK. The call for evidence ran between December 2011 and March 2012 and received more than 1,100 pieces of evidence from people with dementia, carers, family members, health professionals, and other organisations and individuals. The inquiry found there were barriers throughout the process of diagnosis, from people having poor understanding of dementia so not visiting a doctor, through issues faced by GPs and memory specialists, to problems with the quality of support offered immediately following diagnosis. In particular, the inquiry heard a large volume of evidence on problems in the following areas: public education; primary care; Variability of memory services; Post-diagnosis support.

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Gender, poverty and social exclusion

Throughout the 20th century women were more vulnerable to poverty than men which continues into the 21st century. These gender differences are explored in a chapter on gender, poverty and social exclusion in a volume giving the results of the millennium Poverty and Social Exclusion (PSE) Survey. Social exclusion exists where one or more of the social sub-systems is not functioning adequately - the economic, social and family and community systems. Women's poverty is linked to caring and domestic work and is related to the control of financial resources in marriage and the family, they are increasingly dependent on their own earnings, generally lower than men's. The disproportionate care of elderly people has more impact on women. The PSE Survey did not explore the views of all members of a household, a significant limitation in this context. The remaining two sections examine gender and poverty, and gender and social exclusion through the lifecourse. The first investigates the lack of socially perceived [...]

Implementing the Carers (Equal Opportunities) Act 2004

This guide is designed primarily for the social care managers and practitioners responsible for the implementation of the Carers (Equal Opportunities) Act 2004. The essential steps and many of the practice points throughout the guide will be useful to those responsible for strategic planning and commissioning. Practitioners also nneed the support of senior and line managers and an appropriate framework to enable them to help carers. (Previously published as SCIE Practice Guide no. 5).

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Transitions into informal caregiving and out of paid employment of women in their 50s

Data from the Australian Longitudinal Study on Women's Health were used to study the order of events leading to informal caregiving and changes in labour force participation in mid-aged women, taking into account health and socioeconomic status. This analysis included 9857 women who responded to the third (2001) and fourth (2004) surveys and provided data for the caring and employment variables used. Caring was defined as providing care for an ill, frail or disabled person at least 7 h/wk. Between 2001 and 2004, the proportion of women caring increased from 12 to 14%. Paid employment participation decreased from 67 to 62% in 2004. Logistic regression model results show that taking up caring between 2001 and 2004 was not statistically significantly associated with employment status in 2001. Among women who took up caring, however, hours spent in paid employment in 2001 was negatively associated with hours spent caring in 2004. Amongst women working in 2001, taking up caring between 2001 and 2004 was associated with reduced participation in paid employment.

In conclusion, among mid-aged women, transitions into caregiving were irrespective of time spent in paid employment, but were followed by a decrease in labour force participation. Policies could aim to support continuing labour force participation during caregiving by creating flexible working arrangements; re-employment programs could support women who quit work in getting back to paid employment after a period of caregiving.

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Burden of care in amyotrophic lateral sclerosis

Objectives: Amyotrophic lateral sclerosis (ALS) is a fatal disease with unique demands on patients and carers. Patients and methods: The total burden of care and burden components in 37 ALS carers were measured using validated questionnaires. Furthermore, influencing factors (functional impairment of the patient, additional carers, participation in support groups) were assessed. Results: The mean total burden of care for ALS was low compared with dementia, mixed neuropsychiatric and internal diseases, but was correlated with functional impairment (P = 0.003). The main burden components were 'personal and social restrictionsfland ’physical and emotional problems‘. Problem behaviour of the patients was low in general, but was higher in carers participating in support groups (P = 0.002). Carers supported by additional carers had higher strain. Conclusion: The low burden of ALS carers may be caused by the low incidence of problem behaviour in ALS patients. However, if problem behaviour exists, carers participate more often in support groups, indicating the need for assistance. The burden of care increases with the functional impairment. Support for the carers has to start sooner.

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Carers

The article discusses the legislative statement issued by Deputy Minister for Social Services, Gwenda Thomas on the Carers Legislative Competence Order in the Welsh Assembly on December 9, 2008. Thomas said there were still key areas that were not being consistently addressed across Wales including young carers who wants recognition and support where possible. But Thomas clarified that young carers should not have the responsibility that was inappropriate to their age or capacity. Thomas also proposed to include all ages in the definition of carers.

The Government response to the consultation on revised statutory guidance to implement the Strategy for Adults with Autism in England

1. This document is a summary of the responses received during the consultation on revised statutory guidance to implement the Strategy for Adults with Autism in England. It highlights the key themes and common issues from the consultation responses and sets out the Government’s response that has shaped the statutory guidance. 2 Autism is a lifelong condition that influences how people interpret the world and interact with others. It is estimated that more than 500,000 people in England are on the autism spectrum, which includes people with high functioning autism and Asperger Syndrome. Autism is something that people and their families live with permanently so gaining the right support at the right time can make a significant difference to people’s lives. 3. The statutory guidance updates the original guidance, taking into account progress made since 2010 and changes in line with recent legislation such as the Care Act 2014 and the Children and Families Act 2014

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National minimum information standards for all adults in Scotland for assessment, shared care and support plan, review and carers assessment and support: consultation on the compendium of standards

Comments are invited on the National Minimum Standards for Assessment. This compendium sets out the national minimum information standards for all adults, covering Assessment, Shared Care and Support Plans and Review. It also includes national minimum information standards for the identification of needs and support for Carers (‘Carers Assessment’). It builds on and supersedes the National Minimum Information Standards for Single Shared Assessment issued in August 2006 (CCD3/2006). There are two distinct types of standards used throughout the document: information standards which describe the subject matter that must be included without specifying exactly how it should be done or recorded, and data standards which specify the content at a more prescriptive level and include details on format and codes to be used for each of these standards.

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Unpaid carers' access to and use of primary care services

General medical practitioners (GPs) and members of the primary care team have a pivotal role in supporting unpaid carers in their caring role and helping them to maintain their own health and well-being. This paper investigates the difference that caregiving makes to individuals’ access to and use of GP and primary care services. It is based on longitudinal analysis of carers’ contacts with GPs, and a review of the literature including evaluations of measures to improve primary-care-based support for carers. Men increase their consultation rates with GPs when taking on a caring role. In contrast, women who look after someone in the same household and carry heavy caring responsibilities have relatively less contact with GPs than expected. According to the literature, carers report a range of difficulties accessing primary health care. A five-fold typology is described covering barriers arising from: professional responses to the carers’ role; the way services are organized and delivered; language or culturally held beliefs and practices; carer or care recipient characteristics; and unmet information needs. Various measures to improve carers’ access to primary care have been introduced to overcome these barriers, but robust evidence of cost and utility is required to judge their acceptability and effectiveness for both carers and GPs. Although good practice guides, quality standards and evaluation tools are available to help improve primary care support for carers, further investigation of carers’ help-seeking for health care, and the factors involved, is required to underpin the prospects for developing a genuine partnership between unpaid carers and health professionals.

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"Carers behind bars": the hidden world of caring in English prisons

Taking as its starting point the establishment of the Standing Commission on Carers in 2007 and the launch of the National Strategy for Carers in 2008, this article explores who carers are and how demographic changes are likely to impact on carer numbers. It deduces that the need for care is likely to rise significantly in the near future and as such carer numbers will grow. It argues that future policy must take this, and the importance of carers themselves being supported, into account. The article's main focus is on a carer community that has remained largely hidden, that is, imprisoned people who are caring for other prisoners. The extent and nature of the rapidly increasing prison community is discussed with particular attention being drawn to prisoners' health. The high prevalence of poor health in prison is attributed to a complex combination of circumstances. Research (particularly co-author Julia Tabreham's PhD study 'Prisoners' Experience of Healthcare in England) is used to demonstrate that prisone [...]

Chapter 2: THE SUPPORT OF CARERS AND THEIR ORGANIZATIONS IN SOME NORTHERN AND WESTERN EUROPEAN COUNTRIES

Chapter 2 of the book "Key Policy Issues in Long-Term Care" is presented. It explores the support of carers and the carers' organizations in certain countries in northern and western Europe. It looks into the carers' support that is given in the said countries and views the development of the new policy initiatives carers in the Netherlands. It is stated that carers' organization plays an important role in the formation of carers' policy.

Personalisation and carers: whose rights? Whose benefits?

Increasing numbers of developed welfare states now operate cash-for-care schemes in which service users are offered cash payments in place of traditional social services. Such schemes raise concerns about the extent to which they include and support carers. This paper aims to explore some of these issues through an analysis of a cash-for-care initiative piloted in England in 2005–07: the Individual Budgets (IBs) pilot projects. The paper reports the findings of an evaluation of the impact and outcomes of IBs for carers through analyses of qualitative interviews with IB lead officers, carers' lead officers and carers of IB holders; and analyses of structured outcome interviews with carers of IB holders and carers of people in receipt of conventional social care services. The evaluation found that, despite their primary aim of increasing choice and control for the service user, IBs had a positive impact on carers of IB holders. The findings are important in that they have implications for the widespread roll-out of Personal Budgets in England and may also provide wider valuable lessons nationally and internationally about the tensions between policies to support carers and policies aimed at promoting choice and control by disabled and older people.

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The impact of informal care for patients with Pompe disease: An application of the CarerQol instrument

BACKGROUND: Patients with Pompe disease, a rare progressive neuromuscular disorder, receive a considerable amount of informal care. In this study, we examined the impact of providing informal care to patients with Pompe disease.

METHODS: Caregivers were administered various instruments, which measured the (impact of) informal care in the context of Pompe disease. Patients' quality of life and use of a wheelchair and respiratory support were used to investigate the impact of disease severity on the burden and well-being of caregivers.

RESULTS: Of all Dutch patients with Pompe disease, 88 indicated to receive informal care, of which 67 (76%; 67 caregivers) participated in this study. On average, caregivers provided 17.7 hours of informal care per week. Higher disease burden was associated with more hours of informal care. Caregivers experienced burden due to caregiving. Half of the informal caregivers reported mental health problems and problems with daily activities due to providing informal care. Physical health problems occurred in 40% of informal caregivers. Caregiver burden was higher for patients with a lower quality of life and for wheelchair dependent patients. Burden was not associated with respiratory support. Caregivers reported deriving personal fulfillment from caregiving and, on average, would become unhappier if someone else were to take over their care activities.

CONCLUSIONS: The provision of informal care causes burden to caregivers. However, caregivers also value caring for their loved ones themselves. The study may help physicians and policy makers to design measures to support informal caregivers.

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Why Do Patients and Caregivers Seek Answers From the Internet and Online Lung Specialists? A Qualitative Study

Background: Since its launch in 2003, the Dutch Lung Cancer Information Center’s (DLIC) website has become increasingly popular. The most popular page of the website is the section “Ask the Physician”, where visitors can ask an online lung specialist questions anonymously and receive an answer quickly. Most questions were not only asked by lung cancer patients but also by their informal caregivers. Most questions concerned specific information about lung cancer.

Objective: Our goal was to explore the reasons why lung cancer patients and caregivers search the Internet for information and ask online lung specialists questions on the DLIC’s interactive page, “Ask the Physician”, rather than consulting with their own specialist.

Methods: This research consisted of a qualitative study with semistructured telephone interviews about medical information-seeking behavior (eg, information needs, reasons for querying online specialists). The sample comprised 5 lung cancer patients and 20 caregivers who posed a question on the interactive page of the DLIC website.

Results: Respondents used the Internet and the DLIC website to look for lung cancer–related information (general/specific to their personal situation) and to cope with cancer. They tried to achieve a better understanding of the information given by their own specialist and wanted to be prepared for the treatment trajectory and disease course. This mode of information supply helped them cope and gave them emotional support. The interactive webpage was also used as a second opinion. The absence of face-to-face contact made respondents feel freer to ask for any kind of information. By being able to pose a question instantly and receiving a relatively quick reply from the online specialist to urgent questions, respondents felt an easing of their anxiety as they did not have to wait until the next consultation with their own specialist.

Conclusions: The DLIC website with its interactive page is a valuable complementary mode of information supply and supportive care for lung cancer patients and caregivers.

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Elevated depressive symptoms among caregiving grandparents.(living with chronic illness)

Objective: To determine whether caregiving grandparents are at an increased risk for depressive symptoms.

Data Source: National sample (n=10,293) of grandparents aged 53–63 years in 1994, and their spouse/partners, who took part in the Health and Retirement Study (HRS).

Study Design: Grandparents were surveyed in 1994 and resurveyed every two years thereafter, through 2000. Over that period, 977 had a grandchild move in or out of their home. These grandparents served as their own controls to assess the impact of having a grandchild in the home.

Data Extraction: Depressive symptoms were measured using an abbreviated form of the Center for Epidemiologic Studies—Depression (CES-D) scale, scored 1–8, with a score ≥4 associated with depression “caseness.”

Principal Findings: At the time of the 1994 interview, 8.2 percent of grandparents had a grandchild in their home. However, there was substantial variation across demographic groups (e.g., 29.4 percent of single nonwhite grandmothers, but only 2.0 percent of single white grandfathers had a grandchild in residence). The impact of having a grandchild in the home varied by grandparent demographic group, with single grandparents and those without coresident adult children experiencing the greatest probability of elevation in depressive symptoms when a grandchild was in residence. For example, single nonwhite grandmothers experienced an 8 percentage point increase in the probability of having a CES-D score ≥4 when a grandchild was in their home, compared to when a grandchild was not in their home, controlling for changes in health care, income, and household composition over time (95 percent CI=0.1 to 15.0 percentage points).

Conclusions: Grandparents have a greater probability of elevated depressive symptoms when a grandchild is in their home, versus when a grandchild is not in their home. Single women of color bear a disproportionate burden of the depression associated with caring for grandchildren. Since an increasing number of grandparents function as a de facto safety net keeping their grandchildren out of formal foster care, identifying strategies to support the health and well-being of caregiving grandparents is an emerging priority.

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Effectiveness of web-based versus folder support interventions for young informal carers of persons with mental illness: A randomized controlled trial

Objective: Compare the impact of two interventions, a web-based support and a folder support, for young persons who care for people who suffer from mental illness.

Methods: This study was a randomized control trial, following the CONSORT statements, which compared the impact of two interventions. Primary outcome variable was stress, and secondary outcome variables were caring situation, general self-efficacy, well-being, health, and quality of life of young informal carers (N = 241). Data were collected in June 2010 to April 2011, with self-assessment questionnaires, comparing the two interventions and also to detect changes.

Results: The stress levels were high in both groups at baseline, but decreased in the folder group. The folder group had improvement in their caring situation (also different from the web group), general self-efficacy, well-being, and quality of life. The web group showed increase in well-being.

Conclusion: Young informal carers who take on the responsibility for people close to them; suffer consequences on their own health. They live in a life-situation characterized by high stress and low well-being. This signals a need for support.

Practice implications: The non-significant differences show that each intervention can be effective, and that it depends upon the individual's preferences. This highlights the importance of adopting person-centered approach, in which young persons can themselves choose support strategy.

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Caring for a relative with delusional beliefs: a qualitative exploration

Background: In recent years, there has been a gradual shift towards the study of individual symptom presentations in psychosis, this is particularly found in studies of delusional beliefs. However, the literature remains sparse on informal caregiver experiences of individual symptoms.

Aim: The study sought to investigate carer experiences of supporting a relative with delusional beliefs, which involve family members.

Methods: Semi-structured interviews were undertaken with five caregivers and subject to interpretative phenomenological analysis.

Results: Interviews yielded six superordinate themes highlighting issues concerning a carer's exposure to symptoms of illness; lack of understanding about their relatives' delusional beliefs; concerns over coming to harm from their relative: efforts made by the carer to conceal their relative's delusional beliefs and their consequences; fractured relationships, and a long process of learning how to best cope.

Conclusion: Caring for a relative with psychosis who experiences delusional beliefs about the carer and family members can be challenging. The results underscore the importance of providing a programme of support to meet the varied needs of informal carers with an explicit aim of assisting carers in their day-to-day problem solving. It should also help to address issues carers may have about causality, including beliefs about self-blame, and identifying effective coping strategies.

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National bereavement survey (VOICES) 2011: England

The National Bereavement Survey (VOICES) was commissioned by the Department of Health to follow up on a commitment made in the End of Life Care Strategy. This Statistical Bulletin describes the methods and summarises the key results of the first VOICES survey. The survey participants were 22,292 bereaved relatives of individuals whose death was registered from November 2010 to June 2011. Key findings are presented on the following themes: quality of care; dignity and respect; coordination of care; relief of pain and suffering; care and support for the patient; decision making; preferences and choice; support for relatives, friends and carers; and quality of care for people with dementia. The overall quality of care across all services in the last 3 months of life was rated by 12% of respondents as outstanding, 30% as excellent, 33% as good, 14% as fair, and 10% as poor.Being shown dignity and respect by staff was highest in hospices (87 per cent ‘all the time’ for hospice doctors and 80 per cent for hospice nurses) and lowest in hospitals (57 per cent ‘all the time’ for hospital doctors and 48 per cent for hospital nurses). For those who expressed a preference, the majority preferred to die at home (71 per cent), although the most commonly recorded place of death was a hospital (53 per cent).

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The good doctor: the carer's perspective

Carers are family members, friends, and neighbours who perform medical tasks and personal care, manage housekeeping and financial affairs, and provide emotional support to people who are ill, disabled, or elderly. From a carer's perspective, the primary requisite for a good doctor is competence. Assuming equal technical skills and knowledge, the difference between ‘good’ and ‘bad’ doctors comes down to attitudes and behaviour-communication. An important aspect of communication is what doctors say to carers, and how they interpret what carers say to them. Body language-stances, gestures and expression-communicates as well. Good doctors are surrounded by courteous, helpful and efficient assistants. Doctors can make two types of errors in dealing with carers. Type 1 errors occur when doctors exclude the carer from decision making and information. Type 2 errors occur when doctors speak only to the carer and ignore the patient. Good doctors, patients and carers confront the existential meaning of illness together.

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The Perseverance Time of Informal Carers of Dementia Patients: Validation of a New Measure to Initiate Transition of Care at Home to Nursing Home Care

Background: Health care systems aim to involve as much informal care as possible and dementia patients prefer to stay home as long as they can. In this context, perseverance time (Pt)—the period that the informal carer indicates to be able to maintain current care if the situation remains stable—is an important concept. Objective: The aim of this study was to introduce the concept Pt and validate it in a sample of informal carers of dementia patients living at home. Methods: Data were collected from 223 informal carers of dementia patients. Convergent validity was assessed by looking at associations of Pt with validated instruments for measuring subjective burden (CSI, CarerQol-7D, and SRB) and happiness (CarerQol-VAS). Content validity was evaluated by performing multivariate correlations between Pt and characteristics of dementia patients, informal carers, and care situations. The Medical Ethics Committee of Utrecht MC advised positively about the study protocol. Results: Correlation coefficients between Pt and the measures of burden CSI, SRB, and CarerQol-VAS were −0.46, −0.63, and 0.23 (p < 0.01), respectively. Health of dementia patient, informal carer living apart from the patient, and male gender of caregiver were positively associated with Pt; need for supervision, intensity of informal care provision, and reductions in working hours and hobbies in order to be able to provide care were negatively associated. Conclusions: Pt is helpful in monitoring need for support and planning the transition of care from home to nursing home. This study provides a first indication of its validity, but replication is necessary.

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System-wide information about family carers of adults with intellectual/developmental disabilities: scoping review of the literature

Family carers play an important role supporting individuals with intellectual and developmental disabilities (I/DD) into adulthood. Funders of services often desire this ongoing involvement by family members yet they rarely collect data about family carers. As policy makers and planners are increasingly recognizing the need for information related to indicators of system performance, a scoping review was conducted to identify system-wide information needed about family carers of adults with I/DD that would help improve the quality of service provided. A final review of 87 research articles was organized in terms of service use, service need, and permanency planning by family carers of adults with I/DD. Service use and need were associated with the presence of challenging behaviors among individuals with I/DD as well as carer demographics and health status. In addition, carers' subjective view of how well they think they can provide for their child in the future was an important determining factor of service need. Permanency planning was associated with child level of functioning as well as parent income, social support, and compound caregiving demands. Studies highlighted the importance of measuring family carers' mental and physical health and their perceptions of the adequacy of services received. Considered also were methodological limitations, highlighting considerations for future system monitoring. Methodological limitations of studies reviewed include reliance on cross-sectional data, samples consisting of families already receiving at least some services, and little information about the process of seeking and obtaining services. Areas to target in future system monitoring include information on who needs services, what services are needed, families' perceptions of the caregiving experience and families' experiences waiting for services over time. Understanding the experiences of family carers as seekers of formal services can help inform policy and practice.

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Responding to the needs of carers of people with schizophrenia

As more people with a serious mental illness such as schizophrenia live in the community, often with their own families, carers need increasing support. Reports on a small research study which found a link between carers' knowledge of the condition and their ability to manage problems, and between their sense of satisfaction with services and their communications with the mental health team.

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Learning while caring

In this article the author discusses the learning and support needs of older women who, because they cared for elderly relatives, found it difficult to attend classes. She contends that there exists a gap in awareness and equal opportunities provision. In an in-depth investigation of the Government's new Access to Learning Fund (ALF) in relation to part-time students, the author found some considerable discrepancies. While carers in general receive less favourable treatment than disabled learners, the focus is firmly on those with childcare responsibilities, while grannycarers have a very low profile. Even more crucially, Faculty of Continuing Education (FCE) students at Birkbeck College are very unlikely to be following the minimum 60 credit course, which would render them eligible to apply for the ALF in the first place! These findings led the author to turn to the hidden grannycarers themselves, asking them exactly how they wished this glaring gap in their educational provision to be filled. This article presents the results of the author's research which aims to ascertain how Birkbeck, and also the Government, can support carers.

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End of life care in sub-Saharan Africa: a systematic review of the qualitative literature

Background: End of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research. It seeks to identify areas of existing research; describe findings specifically relevant to the African context; and, identify areas lacking evidence.

Methods: Relevant literature was identified through eight electronic databases: AMED, British Nursing Index & Archive, CINAHL, EMBASE, IBSS, MEDLINE, PsycINFO, and the Social Sciences Citation Index; and hand searches. Inclusion criteria were: published qualitative or mixed-method studies in sub-Saharan Africa, about EoL care. Study quality was assessed using a standard grading scale. Relevant data including findings and practice recommendations were extracted and compared in tabular format.

Results: Of the 407 articles initially identified, 51 were included in the qualitative synthesis. Nineteen came from South Africa and the majority (38) focused on HIV/AIDS. Nine dealt with multiple or unspecified conditions and four were about cancer. Study respondents included health professionals, informal carers, patients, community members and bereaved relatives. Informal carers were typically women, the elderly and children, providing total care in the home, and lacking support from professionals or the extended family. Twenty studies focused on home-based care, describing how programmes function in practice and what is needed to make them effective. Patients and carers were reported to prefer institutional care but this needs to be understood in context. Studies focusing on culture discussed good and bad death, culture-specific approaches to symptoms and illness, and the bereavement process.

Conclusions: The data support or complement the findings from quantitative research. The review prompts a reconsideration of the assumption that in Africa the extended family care for the sick, and that people prefer home-based care. The review identifies areas relevant for a research agenda on socio-cultural issues at the EoL in sub-Saharan Africa.

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The quality standards for health and social care: supporting good governance and best practice in the HPSS

This document sets out the quality standards that the Department considers people should expect from Health and Personal Social Services (HPSS) in Northern Ireland. The standards have been developed around the five themes of: Corporate Leadership and Accountability of Organisations; Safe and Effective Care; Accessible, Flexible and Responsive Services; Promoting, Protecting and Improving Health and Social Well-being; and Effective Communication and Information. After discussing the values and principles underpinning the standards and the format of the standards, each of the five themes are discussed in more detail. It is intended that the Regulation and Quality Improvement Authority (RQIA), in conjunction with the HPSS, service users and carers, will agree how the standards will be interpreted to assess service quality. The standards will be regularly reviewed and updated. 

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Fit to care? A comparison of informal caregivers of first -generation black Caribbeans and white dependants with advanced progressive disease in the UK

The present survey aimed to describe and compare the main needs and problems experienced by informal caregivers of Black Caribbean and White native-born patients in their last year of life. Out of the 106 Black Caribbean and 110 White patients identified as dying during the survey period, 50 interviews per ethnic group were conducted, a response rate of 47% and 45%. Out of these, 31 respondents representing Black Caribbean and 28 representing White dependants said that they bore the brunt of caregiving. Compared with those who cared for White dependants, those who cared for Black Caribbean dependants were more likely to be women (84% versus 46%, χ2 = 9.21, 1 d.f., asymptotic P = 0.002) and younger than 55 years of age (73% versus 37%, χ2 = 7.60, 1 d.f., asymptotic P = 0.006). The personal-care tasks which caregivers assisted their dependants with were similar, as were the informal resources they drew on. Many caregivers reported restrictions in their daily lives; this was more pronounced for those who cared for Black Caribbean dependants (χ2 = 6.40, 2 d.f., asymptotic P = 0.041, exact P = 0.039). Research is required to provide a qualitative narrative of the meaning caregivers from different communities ascribe to caring, and the formal and informal resources which they need to support them.

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Enhancing partnerships with relatives in care settings

Aim The aims of this project were to implement guidance that sought to involve carers of older people in decision-making processes, and to promote practice development through work-based learning.

Method Data were collected and analysed to examine how carer involvement was being managed on the wards. The data were then fed back to staff in each area and meetings were held to discuss which aspects of carer involvement were priorities for them. These were then matched with the four markers of satisfactory involvement identified in a previous study (Walker et al 1999).

Results Several strategies were implemented to enhance carer involvement, including life story work, written communication books and a newsletter. Early feedback from the project highlighted benefits for staff and relatives, which included greater confidence in negotiating care and closer relationships between relatives and staff.

Conclusion If carer involvement in care is to become a reality, staff need support and encouragement to develop meaningful relationships with relatives and to value their expert opinions.

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Older carers and dementia

Support for carers now has a higher profile following the introduction of the Carers' Act (2004). In this article, Gary Kitchen reports on a successful review his organisation, Get Heard, carried out of a support service to carers of people with dementia in Cheshire, and demonstrates how vital these services are.

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Carers and co-production: enabling expertise through experience?

Purpose– The purpose of this paper is to provide a brief overview of the literature to date which has focused on co-production within mental healthcare in the UK, including service user and carer involvement and collaboration.

Design/methodology/approach – The paper presents key outcomes from studies which have explicitly attempted to introduce co-produced care in addition to specific tools designed to encourage co-production within mental health services. The paper debates the cultural and ideological shift required for staff, service users and family members to undertake co-produced care and outlines challenges ahead with respect to service redesign and new roles in practice.

Findings – Informal carers (family and friends) are recognised as a fundamental resource for mental health service provision, as well as a rich source of expertise through experience, yet their views are rarely solicited by mental health professionals or taken into account during decision making. This issue is considered alongside new policy recommendations which advocate the development of co-produced services and care.

Research limitations/implications – Despite the launch of a number of initiatives designed to build on peer experience and support, there has been a lack of attention on the differing dynamic which remains evident between healthcare professionals and people using mental health services. Co-production sheds a light on the blurring of roles, trust and shared endeavour (Slay and Stephens, 2013) but, despite an increase in peer recovery workers across England, there has been little research or service development designed to focus explicitly on this particular dynamic.

Practical implications – Despite these challenges, coproduction in mental healthcare represents a real opportunity for the skills and experience of family members to be taken into account and could provide a mechanism to achieve the “triangle of care” with input, recognition and respect given to all (service users, carers, professionals) whose lives are touched by mental distress. However, lack of attention in relation to carer perspectives, expertise and potential involvement could undermine the potential for coproduction to act as a vehicle to encourage person-centred care which accounts for social in addition to clinical factors.

Social implications – The families of people with severe and enduring mental illness assume a major responsibility for the provision of care and support to their relatives over extended time periods (Rose et al., 2004). Involving carers in discussions about care planning could help to provide a wider picture about the impact of mental health difficulties, beyond symptom reduction. The “co-production of care” reflects a desire to work meaningfully and fully with service users and carers. However, to date, little work has been undertaken in order to coproduce services through the “triangle of care” with carers bringing their own skills, resources and expertise.

Originality/value – This paper debates the current involvement of carers across mental healthcare and debates whether co-production could be a vehicle to utilise carer expertise, enhance quality and satisfaction with mental healthcare. The critique of current work highlights the danger of increasing expectations on service providers to undertake work aligned to key initiatives (shared decision-making, person-centred care, co-production), that have common underpinning principles but, in the absence of practical guidance, could be addressed in isolation rather than as an integrated approach within a “triangle of care”.

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Who cares for caregivers? Evidence-based approaches to family support

Currently, more than one in 10 Americans are caregivers, and projections suggest exponential increases in caregiving in the years ahead. Not only is the population growing older, but the spike, in particular, created by the aging of some 78 million baby boomers portends far greater demand. Families continue to represent the lion’s share of caregivers and their caregiving efforts are substantial in every sense of the word. 

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Reaching out or missing out : approaches to outreach with family carers in social care organisations

Outreach is advocated as a way of improving the uptake of services among underserved populations and of filling the gaps between mainstream services and the populations they are intended to support. Despite the policy emphasis on providing better help for family carers, research consistently shows that many of those providing unpaid care to a family member or friend report difficulties in finding out about the assistance to which they are entitled. This article presents results from a concurrent mixed-methods study, which aimed to describe different ways of working with family carers in adult social care departments and to collect the views of a range of stakeholders about the advantages and disadvantages of the approaches that were identified. A total of 86 semi-structured face-to-face interviews were undertaken with a purposive sample of funders, carers' workers, representatives of voluntary organisations and family carers based in four contrasting localities. An email survey was sent to all local councils in England with social care responsibilities and resulted in a 53% response rate. Data collection took place in 2012, with a small number of interviews being completed in 2011. Our approach to data analysis combined methodological, data and theoretical triangulation. The findings presented here mainly draw on the interview data to highlight the different models of outreach that we identified. The article highlights important differences between outreach and the provision of information. It concludes that organisations providing support for carers need to consider the advantages and disadvantages of different models of outreach as they develop carers' support and the extent to which different models might be more effective than others in reaching particular types of carer.

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Older carers of adults with a learning disability confront the future: Issues and preferences in planning

The Valuing People White Paper (Department of Health, 2001) requires services to secure a plan for all service-users with learning disabilities living with older carers and promises them and their families more choice and control over how and where they live. This paper examines the views of the older carers (aged over seventy) of sixty-two adults with a learning disability about planning for the future. Fifty-six took part in interviews in their own homes and six completed a questionnaire. All carers were white and recruited from one local authority in response to the requirements of the White Paper. Findings indicate that a significant proportion (thirty-four—55 per cent) is either not ready or is unwilling to make future plans. Barriers to planning include a perceived lack of need due to the existence of two carers, a lack of awareness of timescales involved in securing housing, difficulties in letting go, a lack of confidence in available housing options, and the existence of mutually supportive relationships. The findings show a need for a proactive approach to information and support provision to enable these families to work through a process of making plans for the future. This is essential to prevent the need for emergency placements in response to crisis and in turn to ensure that adults with learning disabilities have genuine choice and involvement in how and where they live.

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Social work education case study: Bucks New University

Service users, carers and academics describe participation in the social work degree at Bucks New University. It looks at the different ways that users and carers are involved in the course, the importance of the university providing appropriate training and support, the benefits students get from contact with users and carers and what users and carers gain from the experience. The video will be of interest to social worker educators, students on social work courses, people working more broadly in co-production/participation and service users and carers.

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Young carers take their message to the top of the NHS

Teenage carers met nurses, doctors, political and NHS leaders at London Zoo to highlight the health and social care needs of an estimated 166,000 young carers in England.

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Informal Carers and Their Support

The importance of informal carers has only been partially recognised in the UK. A brief examination of recent policy such as the UK Carers Act will highlight the need for further action in this area. The conceptual debate about ‘what is caring’ is summarised: does it involve physical activities only? Are emotional elements also involved? The significance of the informal caregiver's role is discussed. Informal caregiving can bring rewards, but it often has to coincide with other equally demanding roles including employment. Moreover, psychological distress is common among informal carers generally, and the likelihood of poor psychological well-being is greater in carers of people with dementia compared with relatives of older people without dementia. The need to ‘care for carers’ is discussed. Many interventions aimed at caregivers are inadequate, and the optimum type of intervention may vary depending on the needs of the individual carer. Wider social and demographic changes may jeopardise the informal caring network, as it currently exists. Should our ‘invisible’ carers become unwilling, or unable, to sustain their caring role then the consequences could be bleak.

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Informal care in farming families in Northern Ireland: some considerations for social work

This paper is the result of a study of the dynamics of care-giving within farming families in Northern Ireland. It is argued that whilst much is known about informal care, existing knowledge is largely urban based and quantitative, and therefore limited. Following in-depth interviews with 'farm wives' it is concluded that for these women care-giving patterns are dependent on a particular set of cultural expectations and norms. Within farming families there is much resistance to becoming involved with formal social services. Outside help with the care of one's elderly relatives is often seen as an admission of failure, as there is a pride in being able to look after one's family members. Users of social services, which still evoke associations with the Poor Law, are highly stigmatized. It is claimed that for these women the concept of 'carer' has no bearing on their lives and is not something to which they can relate. The paper challenges the depiction of caring as a one-sided difficult relationship where the person being cared for is a passive recipient. It is suggested that caring is not necessarily oppressive but may be rewarding and positive. It concludes that if social workers are to support and facilitate informal care they must be aware of and fully understand the diversity of care provision and the different contexts in which care is undertaken. If intervention is to take place then it must be sensitive to the deeply embedded ideas and perceptions that exist within farming families.

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A lifeline for carers in rural communities

Scottish Highlands: Elizabeth Jones reports on a three-year project providing support to carers of people with dementia in remote, scattered communities in the Highlands of Scotland.

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A new deal for carers

Care services minister Ivan Lewis has promised a consultation to update the 1999 strategy for carers. Mark Hunter considers the priority areas for action. [Introduction]

Determinants of the caregiver's appraisal in the context of caregiving

This article seeks to examine the factors affecting the caregiver's appraisal of caring for a mentally ill relative. Two hundred and ten caregivers attending to a family member with chronic mental illness in India were interviewed for the study. the results of path analysis indicate burden experienced in the context of caregiving, patient's illness characteristics, and kinship support to be the most significant factors contributing to the caregiver's appraisal of the caregiving experience. The implications of the findings are summarised.

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Consultation on draft social care procurement Scotland guidance: summary paper service user and carer involvement

Concern has been expressed about how some local authorities have been buying (procuring) care and support services from voluntary and private sector providers. Service users and carers have said that they have not been happy about the amount of information they have received and how their views have been taken into account. The Scottish Government decided that it would be helpful to address some of the issues by preparing Guidance which details each step of the social care procurement process. This can be referred to by service users and carers, local authorities and service providers. The Joint Improvement Team (JIT) and Scottish Procurement Directorate (SPD) have been leading the work with a national Reference Group. 

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Caregiving for Parents and In-Laws: Commonalities and Differences

This study examined support, stress, and well-being between adults who provide care for an aging and disabled parent and those who care for an aging and disabled parent-in-law. The study utilized a sample of individuals caring for a parent (n = 77), individuals caring for an in-law (n = 26) and a comparison group of noncaregivers (n = 1,939) from the Midlife Development in the United States study. In-law caregivers provided more financial assistance but adult child caregivers provided more emotional support and unpaid work. Adult child caregivers reported poorer mental health and family strain; in-law caregivers reported more spouse support and less family strain.

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Attitudes and support needs of Black Caribbean, South Asian and White British carers of people with dementia in the UK

Family carers are the most important source of dementia care, especially among ethnic minority populations, who are less likely to access health or social services. The evidence base on the carer experience in these communities is profoundly limited.

To explore the caregiving attitudes, experiences and needs of family carers of people with dementia from the three largest ethnic groups in the UK.

A qualitative study, using a grounded theory approach. In-depth individual interviews were conducted with 32 carers of people with dementia (10 Black Caribbean, 10 south Asian, 12 White British).

Carers were identified as holding a ‘traditional’ or ‘non-traditional’ caregiver ideology, according to whether they conceptualised caregiving as natural, expected and virtuous. This informed feelings of fulfilment, strain, carers' fears and attitudes towards formal services. The majority of the south Asian, half of the Black Caribbean and a minority of the White British participants were found to possess a traditional ideology.

The findings suggest that specific cultural attitudes towards the caregiving role have important implications for how carers can best be supported.

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Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: A qualitative study

Background: Current end-of-life care policy and guidance recognises the important contribution of family carers, recommending that their needs should be assessed to support them in their caring role. How regular carer assessment is to be achieved is unclear, particularly because there is no evidence-based tool for directly assessing carers’ support needs that is suitable for use in end-of-life home care practice.

Aims: To obtain carers’ perspectives of key aspects of support needed during provision of end-of-life care at home and to develop a carer support needs assessment tool suitable for use in everyday practice.

Design: Qualitative using focus groups and telephone interviews. Thematic analysis uses a framework approach.

Setting/participants: 75 adult bereaved carers who were family members/friends of patients referred to five Hospice at Home services in the UK.

Results: Carers’ needs fell into two distinct groupings of key support areas or ‘domains’: support to enable them to provide care for their relative and more direct personal support for themselves. Many aspects of supportive input were common across domains, for example, anticipatory information, explanations or being included in the care process. Therefore, the tool was designed as a screening measure, to identify support needs requiring further detailed assessment.

Conclusions: The Carer Support Needs Assessment Tool (CSNAT) is an evidence-based direct measure of carers’ support needs in 14 domains. It is short but comprehensive in approach and thus suitable for both end-of-life care research and practice. Further work has been undertaken to test its psychometric properties.

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Keeping carers healthy: the role of community nurses and colleagues

Carers form a substantial proportion of the patients seen by primary care professionals, but their health needs are often overlooked. By recognizing and addressing the needs of the carer as well as the patient, primary care staff (including practice, community and district nurses) can protect the physical and mental health of both. Staff can start by developing simple systems for identifying and recording both patients who are carers, and patients who have carers. Primary health professionals may be able to identify specific opportunities for checking on carers’ health, e.g. at general health checks or clinics for older people or those with chronic diseases. Community nurses should ensure that they use their home visits to keep an eye on the health of the carer as well as the patient. Much of this input can be integrated into the everyday activities and priorities of the primary care team.

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The effectiveness of paid services in supporting unpaid carers' employment in England

This paper explores the effectiveness of paid services in supporting unpaid carers’ employment in England. There is currently a new emphasis in England on ‘replacement care’, or paid services for the cared-for person, as a means of supporting working carers. The international evidence on the effectiveness of paid services as a means of supporting carers’ employment is inconclusive and does not relate specifically to England. The study reported here explores this issue using the 2009/10 Personal Social Services Survey of Adult Carers in England. The study finds a positive association between carers’ employment and receipt of paid services by the cared-for person, controlling for covariates. It therefore gives support to the hypothesis that services for the cared-for person are effective in supporting carers’ employment. Use of home care and a personal assistant are associated on their own with the employment of both men and women carers, while use of day care and meals-on-wheels are associated specifically with women's employment. Use of short-term breaks are associated with carers’ employment when combined with other services. The paper supports the emphasis in English social policy on paid services as a means of supporting working carers, but questions the use of the term ‘replacement care’ and the emphasis on ‘the market’.

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Telecare in practice: a telecare initiative focusing on carers of older people based on ACTION

There is a continual need to support and assist carers who play a central role in providing informal care for a relative. This approach to care provision must have a strong foundation based on liaison between the family carers, professional carers and the older or disabled person who is the focus of care. Services that enable effective communication using videoconferencing, interactive communication, tailored Web based programs and other specific resources configured for the needs of the individual can help carers carry out their role effectively. The initiative described in this paper uses a combination of telematic focused interventions to meet the needs of carers and provides an in-depth overview of the ACTION telecare project.

The ACTION (Assisting Carers using Telematic Interventions to meet Older persons’ Needs) project was set up and funded because of the need to develop supportive methods for carers and older people. The initiative was designed to improve autonomy and maintain independence and quality of life for people in their own homes and therefore reduce the need for institutional care. This has an economic as well as a social dimension. The project has demonstrated that with the involvement of users at all levels it can fulfil this need. The role of the ACTION project was to develop a cost-effective telecare system for the provision of education, information and support and has been demonstrated with successful results.

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Daily life for young adults who care for a person with mental illness: a qualitative study

This study describes the daily life and management strategies of young informal carers of family members or friends with mental illness. Twelve young adults (three men and nine women; 16–25 years old) in Sweden were voluntarily recruited between February and May 2008. Data collected through eight individual semi-structured interviews and one focus group interview were analysed using qualitative content analysis. The findings revealed nine subthemes that were further grouped into three main themes: showing concernproviding support and using management strategies. Participants lived in constant readiness for something unexpected to happen to the person they cared for, and their role in the relationship could change quickly from family member or friend to guardian or supervisor. Supporting a friend was considered as large a personal responsibility as supporting a family member. Their management strategies were based on individual capacities and their ability to step aside should the situation become too demanding. These young informal carers need support in caring for the mentally ill. As the internet becomes increasingly fundamental to daily life, support could be provided most effectively through person-centred web sites.

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Care coordination assisted by technology for multiethnic caregivers of persons with dementia : a pilot clinical demonstration project on caregiver burden and depression

We evaluated a care-coordination project assisted by a screen-phone to support and educate caregivers. A total of 113 caregivers of home-dwelling veterans with dementia were recruited to the study: 72 were white, 32 were African American and nine were Hispanic. Caregivers were assessed for burden, depression, coping, quality of life, knowledge and satisfaction. None of the outcome measures changed significantly after twelve months. Forty care-recipient and caregiver dyads responded to the twelve-month telephone satisfaction survey. The respondents were more satisfied with the care-coordination (90 per cent) aspect of the programme than the education (77 per cent) or the monitoring (50 per cent). The pilot project suggests that care coordination aided by screen-phones may be a useful model for caregiver support in a managed-care setting. A systematic study is now required. 1 fig. 2 tables 20 refs. 

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Caring attitudes

Up to one and a half million people in Britain are involved in caring for a relative or friend with mental illness or dementia. Recent government policy has emphasised the needs of this particular group of carers, but effective support can be implemented only if managers and practitioners know what works.

Looks at the findings from a review of mental health carer support and the effectiveness of the services on offer. The review was carried out by the Social Policy Research Unit (SPRU) at the University of York.

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A pilot study of how information and communication technology may contribute to health promotion among elderly spousal carers in Norway

The objective of this pilot Norwegian intervention study was to explore whether use of information and communication technology (ICT) by informal carers of frail elderly people living at home would enable them to gain more knowledge about chronic illness, caring and coping, establish an informal support network and reduce stress and related mental health problems. Potential participants were close relatives of an elderly person with a diagnosis of a chronic illness dwelling in the same household who wished to continue caring for their relative at home, were 60 years of age or older, had been caring for less than 2 years, were a computer novice and had Norwegian as their first language. Nineteen elderly spousal carers participated in the study from two municipalities in eastern Norway. The project commenced in January 2004 and consisted of a multimethod evaluation model. Outcomes measured included carers’ social contacts (measured by the Family and Friendship Contacts scale); burden of care (measured by the Relative Stress scale); and knowledge about chronic disease and caring, stress and mental health and use of ICT (examined via a composite carer questionnaire). These quantitative data were collected immediately prior to the study and at 12 months. Qualitative data were also collected via focus group interviews with participant carers at 7 months. At follow-up, quantitative measures did not reveal any reduction in carer stress or mental health problems. However, carers reported extensive use of the ICT service, more social contacts and increased support and less need for information about chronic illness and caring. Contact with and support from other carers with similar experiences was particularly valued by participants. The intervention also enhanced contacts with family and friends outside the carer network. Thus, it can be seen that ICT has the potential to contribute to health promotion among elderly spousal carers.

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The Day-to-Day Co-Production of Ageing in Place

We report findings from a study that set out to explore the experience of older people living with assisted living technologies and care services. We find that successful ‘ageing in place’ is socially and collaboratively accomplished – ‘co-produced’ – day-to-day by the efforts of older people, and their formal and informal networks of carers (e.g. family, friends, neighbours). First, we reveal how ‘bricolage’ allows care recipients and family members to customise assisted living technologies to individual needs. We argue that making customisation easier through better design must be part of making assisted living technologies ‘work’. Second, we draw attention to the importance of formal and informal carers establishing and maintaining mutual awareness of the older person’s circumstances day-to-day so they can act in a concerted and coordinated way when problems arise. Unfortunately, neither the design of most current assisted living technologies, nor the ways care services are typically configured, acknowledges these realities of ageing in place. We conclude that rather than more ‘advanced’ technologies, the success of ageing in place programmes will depend on effortful alignments in the technical, organisational and social configuration of support.

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Personalisation and the carers agenda

Social care is rising up the government’s political agenda. When care minister Ivan Lewis responded to this year’s hard-hitting State of Social Care report from the Commission for Social Care Inspection (CSCI) with a review of eligibility criteria, he was announcing a policy shift with implications far beyond social care.

The CSCI’s report said that the current care system is a postcode lottery, and that the rather ironically titled Fair Access to Care Services (FACS) “is used as a crude tool to limit demand and leading to overwhelmingly poor quality life experiences for those who are deemed ineligible”.

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Facilities for carers of in-patients in forensic psychiatric services in England and Wales

A postal survey of forensic psychiatric facilities in England and Wales was undertaken to obtain information about the services provided for carers of in-patients within these services.

Forensic psychiatric services vary in the support and facilities provided for carers. Many do not comply with current legislation for carers. Most units informed carers of their rights to have an assessment, but only a minority provided facilities for carers from Black and minority ethnic backgrounds.

Forensic psychiatric services should meet standards for the involvement and support of carers in mental health settings, and comply with legislation for carers.

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Children caring for their “caregivers”: exploring the caring arrangements in households affected by AIDS in Western Kenya

Reflecting dominant understandings of childhood, many researchers describe orphans as an emotional and financial cost to the households in which they live. This has created a representation of orphans as a burden, not only to their fostering household, but also to society. This article seeks to challenge this representation by exploring children's contributions to their fostering households. Drawing on research from Bondo District in Kenya, this article brings together the views of 36 guardians and 69 orphaned children between the ages of 11 and 17, who articulated their circumstances through photography and drawing. Nearly 300 photos and drawings were selected by the children and subsequently described in writing. An additional 44 in-depth interviews and three focus group discussions were conducted to explore findings further. The data suggest that many fostering households benefit tremendously from absorbing orphaned children. All orphans were found to contribute to their fostering household's income and provide valuable care or support to ageing, ailing or young members of their households. The article concludes that caution should be exercised in using the term “caregiver” to describe foster parents due to the reciprocity, and indeed at times a reversal, of caring responsibilities.

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Mobile dementia counselling: An instrument to support informal carers in rural; areas in Germany

Studies show that comprehensive and accessible counselling for people with dementia and their informal carers can improve the informal care setting in many ways. For example, a need-oriented and early use of counselling is fundamental for using professional care services. However, many informal carers do not use counselling due to various reasons such as an information deficit and a lack of (regional) accessibility of counselling. The Rhine-Erft district, a rural area in Germany, improved its network of dementia care services by establishing a mobile gerontopsychiatric counselling with special focus on dementia. A specially equipped “counselling bus” offers free counselling at several public places in towns and villages of the district at least once a month. The main objectives of the counselling service are to give informal carers an individual and neutral overview about local care services and to raise awareness for people suffering from dementia. Using a multi-method approach, the concept “mobile dementia counselling” was evaluated with the aim to determine how mobile dementia counselling has to be designed and implemented to meet the needs of informal carers. The results show first, that mobile dementia counselling is a low-threshold and successful way to reach informal carers and to inform them about different aspects of dementia care. Second, it contributes to the improvement of their caring situation and helps to reduce the burden of care. Third, it also improves the cooperation and communication of local stakeholders regarding dementia care. Based on these and other data from the evaluation, recommendations for an effective and successful implementation of a mobile dementia counselling service will be derived.

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Supporting carers in paid employment: developing a needs-led approach

This paper presents some of the key findings from a study about supporting carers in employment. It describes the qualitative experiences of family carers for older people who are in paid employment, paying particular attention to their views on assessment and service provision. The perspectives of other key stakeholders, including staff from statutory and independent sector agencies, are also considered. Support for carers in employment is one of the five priority action areas underpinning the National Strategy for Carers (DoH, 1999). However, the findings from this study reveal that carers in employment have a limited profile at strategic level and their specific needs are rarely addressed in mainstream health and social care planning processes. The findings also suggest that assessment and care management practices are failing to support carers in relation to their employment aspirations. The effectiveness of health and social care assessments in identifying and exploring the needs of carers in employment is limited and very few separate carer assessments are completed. Carers' first‐hand experiences of service provision are described. Deficits in current services are identified and examples of good practice are highlighted. The paper concludes by outlining the implications for policy and practice. It is suggested that flexible support, underpinned by partnerships between employers and staff from statutory and independent sector agencies, is the key to supporting carers in employment.

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Making school nurses 'carer aware'

The article reports on a Public Health England (PHE) scheme aimed at identifying and supporting the wellbeing of young carers in England through the help of school nurses and other public health nurses. The scheme was honoured at inaugural awards of the Academy of National Health Service (NHS) Fabulous Stuff. According to PHE lead nurse Wendy Nicholson, many carers do not speak up because they fear that they would be removed from their family homes.

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Is caring a health hazard? The mental health and vitality of carers of a person with a disability in Australia

OBJECTIVE: To compare the mental health and vitality of people caring for a family member with a disability with those of the general population. Second, to identify factors experienced by carers that put them at risk of poor mental health and vitality.

DESIGN: Cross-sectional design where logistic and multiple regression analyses were used to compare rates of mental health problems and vitality between carers and the general population while controlling for demographic characteristics. In addition, logistic and multiple regression using data from the survey of carers were used to identify risk factors for poor mental health and vitality that were particular to caregiving.

PARTICIPANTS AND SETTING: A randomly selected representative survey of 1002 carers from the Australian Centrelink administrative database (June 2006) who received government payments to care for a person with a disability or severe medical condition, or a person who was frail aged. A sample of 10,223 non-carers was drawn from the fourth wave of the Household, Income and Labour Dynamics in Australia Survey, a nationally representative household panel survey (August 2004 to February 2005).

MAIN OUTCOME MEASURES: Mental health and vitality as measured by the Medical Outcomes Study 36-item Short-Form Health Survey.

RESULTS: Compared with the general population, carers were at significantly greater risk of having a mental health problem and lower levels of vitality, even after controlling for demographic characteristics. For carers, the risk factors for poor mental health and lower levels of vitality were caring for a person with a disability with higher care needs, experiencing greater levels of financial stress, lower levels of support and worse family functioning.

CONCLUSION: Carers are at greater risk of mental health problems and lower energy levels than the general population.

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Shaping the future of care together: equality impact assessment

This assessment looks at the likely equality impact of possible reforms to the care and support system on people according to age, ethnicity, gender, race, religion and belief, and sexuality. It takes the issues of funding, increased personalisation, innovation, joined-up services and better provision of information on how the system works and what service users and carers are entitled to as proposed in the green paper 'Shaping the future of care together' and forecasts potential outcomes for the groups mentioned above.

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Carer mentoring: A mixed methods investigation of a carer mentoring service

Background: Worldwide with ageing populations, the numbers of informal carers are likely to increase. Although being a carer is often satisfying, it can be challenging and require support. Volunteer-provided carer mentoring services where carers are supported by volunteer mentors are one such intervention. However, little is known about the impact of mentoring, carers’ experiences or the mechanisms by which these schemes may work. Previous quantitative findings have been inconsistent suggesting a different, mixed methods approach using qualitative and quantitative methods may be valuable.

Objectives: Objectives were to explore two main questions: whether mentoring had a significant positive effect on carer mentees in terms of mental health, quality of life and confidence in caring and to explore how carers experience and perceive the process and benefits of mentoring. In addition, the study aimed to suggest possible mechanisms to understand how mentoring may benefit carers.

Methods and setting: Mixed methods (quantitative questionnaires and depth interviews) investigated an established mentoring service provided by volunteer mentors. During the study period, 28 carers received mentoring. Of these, 25 carers completed structured questionnaires both before and after mentoring, to determine whether mentoring had an impact on carer wellbeing and confidence in caring. Depth interviews were also undertaken with 11 purposively sampled carers to explore how carers experience and perceive the process and benefits of mentoring.

Results: Statistically significant improvements in carer anxiety (p < 0.001), depression (p < 0.001), quality of life (p = 0.02) and confidence in caring (p < 0.05 on all dimensions except one) were found. Depth interviews revealed that carers were very positive about mentoring and highlighted many benefits. Findings suggested emotional support, information provision, problem solving facilitation and gaining new perspectives may be mechanisms by which mentoring achieves positive outcomes. Mentor personal characteristics, experiences and training are possible facilitators of the process.

Conclusions: Carer mentoring services can be a valuable form of carer support that falls somewhere between formal and informal support. Adopting mixed methods permitted greater understanding of how mentoring may benefit carers and has implications for mentor recruitment and training. The fact that mentoring can be provided by volunteer mentors makes it an attractive, potentially cost-effective means of supporting carers.

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When Harry met Barry, and other stories: a partner's influence on relationships in back pain care

This study forms part of a longitudinal investigation of pain, disability and health care use in primary care low back pain consulters. Sixteen purposively sampled patients and their health care professionals were interviewed about experiences with back pain and their therapeutic relationships. This case study draws on the accounts of one patient, his wife, and three health care professionals and explores the role of the informal carer in back pain care. The interview with the patient and his wife highlights the dynamics of a co-constructed narrative of back pain. The joint narrative is fundamentally supportive of the patient's condition, yet his wife's preference for a proactive approach to health care is undermined by the patient's unquestioning respect for health professionals. In addition, the patient's limited expression—of his suffering and his feelings regarding care received—results in less beneficial care where opportunities remain unfulfilled and problems unresolved. His wife's role as narrator of his pain provokes different reactions from health professionals and these are discussed. Analysis reveals a positive and mediating role for informal carers within the provision of health care. However, the construction of the patient's limited expression in opposition to his wife as an ‘expert carer’ raises issues around these roles in the therapeutic encounter that require further exploration. To use supportive relationships effectively there is a need to better understand the interplay between the patient and carer roles, how these roles are negotiated in the health care consultation, and the possible contradictions that this poses.

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Supportive practice with carers of people with substance misuse problems

While there is increased recognition of the role of family carers in supporting adults with social care needs, some groups of carers are overlooked or hidden from professional view. Carers of people with substance misuse problems may be among this group since they are at risk of feeling guilty and stigmatised; targeting and eligibility criteria may concentrate professionals’ activities on people with high levels of need for practical support and there may be complex family dynamics where the role of carer does not fit traditional models. This article draws on a study of carers’ workers (professionals whose role entailed a specific remit to work with carers, such as carers support workers) and family carers undertaken in four areas of England. A total of 86 interviews were conducted (late 2011–2012), of which, just over a quarter (26%) involved some discussion of substance misuse. The findings were analysed thematically. The findings from the study were later reported to a focus group of practitioners and carers with experience of drug-and-alcohol support for validation in 2014. Key themes in relation to social work practice with carers of people with alcohol and other drug problems were those of insecure funding of voluntary sector carer services; balancing generic support for family carers and specific support for certain groups of carers; and feelings among carers that the drug-and-alcohol problems experienced by the person they were supporting contributed to them feeling excluded from general carers’ support. The article concludes that drug and alcohol social workers should be alert to the implications of the Care Act 2014 and its provision for carers, and that carers’ workers should be confident in being able to refer carers to appropriate support in either general or specific settings or raise this as an unmet need if such provision is not adequate locally. Social work trainers and educators should ensure they are working within evidence-based interventions to enhance professional capacity and capability.

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Carer satisfaction with end-of-life in Powys, Wales: a cross-sectional survey

A cross-sectional postal survey of bereaved carers was conducted in order to examine levels of satisfaction with services provided for people in their last year of life in the rural county of Powys, Wales, UK. A self-complete questionnaire, using a modified version of the Views of Informal Carers – Evaluation of Services instrument was sent to all bereaved carers of all those people dying of cancer in Powys between 1 April 1999 and 30 June 2001. Eight hundred and five (out of a possible of 815 people) were contacted and 407 agreed to receive the questionnaire. Out of these 407 individuals, 301 (74% of those who agreed to receive a questionnaire and 37% of the 815 contacted) returned a completed questionnaire. A single reminder letter was sent to non-responders. It was found that the majority of those who received help from district nurses or practice nurses (90%) said that they were excellent or good. However, nearly 40% of respondents reported needing more nursing help. More help was also needed from social care services. For 103 out of the 301 respondents, it was known that the deceased person wanted to die at home; only 44 did so. Only one-fifth of respondents had the opportunity to talk to someone from health and social services after their bereavement; a large majority (four-fifths) found this helpful. One-tenth of respondents reported untreated pain at home; however, there was evidence for an increasing proportion of those treated having received good pain relief. Although there are high levels of satisfaction with care and services received by Powys residents, deficits exist in relation to: symptom control, nursing help, assistance from social services with transport and bathing, communication, and bereavement support.

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The role of carers and families in reablement

The film introduces Jill Hunter who was recently discharged from hospital with limited mobility, following major surgery. Jill lives alone and was determined to return to her independent lifestyle. To enable this, Central Bedfordshire adult social care services commissioned their reablement team to work with Jill. We hear from two community reablement workers about the incredible transition people like Jill can make from initially requiring intensive support to being completely independent. We also hear how crucially important it is for families to ‘buy into' the reablement ethos and contribute to its success. In turn, Emily Holzhausen (Carers UK) describes how reablement teams must respect and involve families, recognising their role as part of the whole support circle.

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Social Services and Well-being (Wales) Act 2014: part 2 code of practice (general functions)

This code of practice sets out the requirements for local authorities in relation to the provisions contained in Part 2 of the Social Services and Well-being (Wales) Act 2014. These cover the general functions of a local authority, including assessment of the needs of a population for social care and other services such as those that promote well-being, and the promotion of social enterprises, co-operatives, user-led services and the third sector. In addition, this part covers how persons exercising functions under the Act should ensure they meet their duties to promote the well-being of people who need care and support and carers who need support, how local authorities must provide a range of preventative services, and how local authorities should discharge their duties in relation to the provision of a service for providing people with information and advice relating to care and support; and assistance in accessing care and support.

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Current and future concerns of older parents of sons and daughters with intellectual disabilities

Increasingly greater numbers of older parents are providing care at home for their sons and daughters with intellectual disabilities. As attention needs to be paid to the supports needed by such families to assist them with their caregiving activities, it is prudent to identify the types of supports that will be needed when the parents are no longer able to provide care. Working with a cohort of older parent carers in Prince Edward Island, Canada, the authors undertook to examine older carer concerns and planning issues. Using both qualitative and quantitative methods to explore the key issues that older parents of sons and daughters with intellectual disabilities are currently facing and their preferences for care in the future, the authors initiated a population-case-finding process, undertook pilot interviews with a sample, and then used the resultant qualitative data to form the quantitative component of the study. Of 132 identified families in the province, 10 parents voluntarily participated in pilot interviews, and 33 parents agreed to complete in-depth interviews. Analysis of qualitative data resulted in the following five themes: (1) worry about the future care of son or daughter; (2) concern about services funding; (3) having housing and care options; (4) lack of provider understanding of carer's needs; and (5) helping son or daughter become a productive and active member of society. Key issues identified through quantitative analysis included interactions with the government, the need for respite care, and meeting social and emotional needs. Preferred types of housing and care options included “small option homes” and services that provide care to both older parents and their sons and daughters. The authors' results emphasize the necessity of adequate supports being made available to older parents who wish to support their sons and daughters with intellectual disabilities at home and to ensure that desired supports are available in the future when they are no longer able to provide care.

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Experiences of rural male caregivers of older adults with their informal support networks

More male caregivers are assuming primary caregiving roles for older adults with chronic health conditions. One of the main sources of support for many caregivers is the assistance that is provided by members of their informal support network. Little is known about the relationship between male caregivers and their informal support networks. This qualitative study examines the experience of male caregivers with their informal support networks, specifically looking at two phenomena: (1) Perceptions of the male caregivers about the willingness of their informal support networks to provide caregiving assistance and (2) Willingness of the male caregivers to ask their informal support networks for assistance. Twenty male caregivers were recruited across a rural Midwestern state. Each male caregiver engaged in two interviews that lasted between 60 and 120 minutes. Seven themes emerged from the data about the male caregivers experience with their informal support networks. Results from this study have implications for geriatric health professionals who work with male caregivers to obtain the necessary amount of caregiving assistance.

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Delivering the Bamford vision: the response of the Northern Ireland Executive to the Bamford Review of Mental Health and Learning Disability: action plan 2012-2015

An action plan for the implementation of the recommendations set out in the Bamford Review of Mental Health and Learning Disability, an independent review of legislation, policy and service provision, concluded in August 2007. Broadly the review called for: continued emphasis on promotion of positive mental health; reform of mental health legislation; a continued shift from hospital to community-based services; development of a number of specialist services, to include children and young people, older people, those with addiction problems and those in the criminal justice system; and an adequate trained workforce to deliver these services. The plan sets out in detail key actions aimed at: promoting positive health, wellbeing and early intervention; supporting people to lead independent lives; supporting carers and families; providing better services to meet individual needs; and developing structures and a legislative framework.

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Dementia Awareness Campaign

The website of a national campaign to improve public understanding of dementia. The campaign will run throughout March 2010 though TV, radio, press and online advertising feature real-people with dementia. The adverts target 40-60 year olds, and encourage people to find out about the many simple ways to help someone living with dementia. The campaign is part of measures to implement the National Dementia Strategy. The website provides links to help people support someone living with dementia, including advice for caring for someone with dementia;  communicating well with someone with dementia; carers talking about their experiences of caring for someone with dementia. Links to services for carers, including respite care and mental health services are also provided.

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Why do families relinquish care? An investigation of the factors that lead to relinquishment into out-of-home respite care

BACKGROUND: Families/carers relinquishing the care of family members with a disability into the care of out-of-home respite facilities is an under-researched area in the disability field. With this in mind, the aim of this study was to explore the factors that lead to families relinquishing care, the potential early indicators that families are considering relinquishment; the factors that may prevent relinquishment and the outcomes for families/carers after relinquishment occurs. METHOD: Thirty-two client files (of individuals for whom families have relinquished their care in a defined 12-month period) were reviewed for information around their relinquishment into out-of-home respite care facilities for an extended stay. Staff members involved with these families (a total of 17) were also interviewed to provide more information. RESULTS: A thematic analysis of the results found that the factors that led to relinquishment could be categorised into: (1) characteristics inherent to the individual with intellectual disability; (2) characteristics inherent to the family/carer; and (3) characteristics associated with the support context that the carer/family is currently experiencing. It was also found that families'/carers' experienced positive outcomes after relinquishment had occurred; however, feelings of guilt and mourning were initially felt. CONCLUSIONS: Extra supports (e.g. increased respite care, planning for movement of the family member into out-of-home permanent accommodation and case management) and positive interventions such as parent training were highlighted as potential strategies to achieve more lasting benefits from short-stay out-of-home respite care.

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Experiences of using a memory aid to structure and support daily activities in a small-scale group accommodation for people with dementia

Background: Use of technology to structure and support the daily activities of the residents in a small-scale group accommodation (SSGA) for dementia is a new innovation in the Netherlands. This paper presents the process of development of this new way of structuring activities and the findings of a pilot study looking at the experiences of using this device in people with dementia.

Method: A qualitative method was chosen, data were collected using individual interviews with the residents (n = 6), focus groups interviews with informal carers (n = 5) and members of staff (n = 6). Data were analysed using Ritchie & Spencer’s framework (1994).

Findings: Three main themes emerged: issues regarding the implementation, needs for further development and the learning experiences acquired during the development. The majority of the residents were happy with the use and function of the memory aid. However, the occurrence of installation errors, limited ease of use and a lack of knowledge regarding the function and use of the memory aid were issues that prevented a successful implementation. Findings highlighted shared views about ways of improving through adaptation of the software program and additional technological applications; internet connectivity, improving its accessibility by using a remote control and adding videos and photos.

Conclusion: Lessons are learned about the use and transferability of this innovation in people with dementia and other vulnerable target groups including those with learning disabilities as well as its limitation and the needs for further development.

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Together for Mental Health delivery plan: 2016-19: consultation document

A consultation on the delivery plan of the Welsh Government’s strategy to improve mental health and well-being, for the period 2016-19. The strategy consists of five chapters and is underpinned by 18 outcomes which are set out in this document. Strategy outcomes and delivery plan priority areas have been mapped against the goals of the Well-being of Future Generations (Wales) Act (2015). The priority areas identified in the delivery plan are: all children have the best possible start in life, enabled by giving parents / care-givers the support they need; all children and young people are more resilient and better able to tackle poor mental well-being when it occurs; children and young people experiencing mental health problems get better sooner; people at working age are more resilient and better able to tackle poor mental well-being when it occurs; people with mental health problems, their families and carers are treated with dignity and respect; services meet the needs of the diverse population of Wales; People with a mental health problem have access to appropriate, evidence based and timely services; People of all ages experience sustained improvement to their mental health and well-being through access to positive life chances; Wales is a ‘Dementia Friendly Nation’;The quality of life for older people is improved, particularly through addressing loneliness and isolation. 

Original document on the Welsh Government website.

Family support for stroke: a randomised controlled trial

BACKGROUND: Attention is currently focused on family care of stroke survivors, but the effectiveness of support services is unclear. We did a single-blind, randomised, controlled trial to assess the impact of family support on stroke patients and their carers.

METHODS: Patients with acute stroke admitted to hospitals in Oxford, UK, were assigned family support or normal care within 6 weeks of stroke. After 6 months, we assessed, for carers, knowledge about stroke, Frenchay activities index, general health questionnaire-28 scores, caregiver strain index, Dartmouth co-op charts, short form 36 (SF-36), and satisfaction scores, and, for patients, knowledge about stroke and use of services, Barthel index, Rivermead mobility index, Frenchay activities index, London handicap scale, hospital anxiety and depression scales, Dartmouth co-op charts, and satisfaction.

FINDINGS: 323 patients and 267 carers were followed up. Carers in the intervention group had significantly better Frenchay activities indices (p=0.03), SF-36 scores (energy p=0.02, mental health p=0.004, pain p=0.03, physical function p=0.025, and general health perception p=0.02), quality of life on the Dartmouth co-op chart (p=0.01), and satisfaction with understanding of stroke (82 vs 71%, p=0.04) than those in the control group. Patients' knowledge about stroke, disability, handicap, quality of life, and satisfaction with services and understanding of stroke did not differ between groups. Fewer patients in the intervention group than in the control group saw a physiotherapist after discharge (44 vs 56%, p=0.04), but use of other services was similar.

INTERPRETATION: Family support significantly increased social activities and improved quality of life for carers, with no significant effects on patients.

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Knowledge generation about care-giving in the UK: a critical review of research paradigms

While discourse about care and caring is well developed in the UK, the nature of knowledge generation about care and the research paradigms that underpin it have been subjected to limited critical reflection and analysis. An overarching synthesis of evidence – intended to promote debate and facilitate new understandings – identifies two largely separate bodies of carer-related research. The first body of work – referred to as Gathering and Evaluating – provides evidence of the extent of care-giving, who provides care to whom and with what impact; it also focuses on evaluating policy and service efficacy. This type of research tends to dominate public perception about caring, influences the type and extent of policy and support for carers and attracts funding from policy and health-related sources. However, it also tends to be conceptually and theoretically narrow, has limited engagement with carers' perspectives and adopts an atomistic purview on the care-giving landscape. The second body of work – Conceptualising and Theorising – explores the conceptual and experiential nature of care and aims to extend thinking and theory about caring. It is concerned with promoting understanding of care as an integral part of human relationships, embedded in the life course, and a product of interdependence and reciprocity. This work conceptualises care as both an activity and a disposition and foregrounds the development of an ‘ethic of care’, thereby providing a perspective within which to recognise both the challenges care-giving may present and the significance of care as a normative activity. It tends to be funded from social science sources and, while strong in capturing carers' experiences, has limited policy and service-related purchase. Much could be gained for citizens, carers and families, and the generation of knowledge advanced, if the two bodies of research were integrated to a greater degree.

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Informal caring for stroke survivors: Meta-ethnographic review of qualitative literature

Stroke is a very common cause of adult disability often leaving stroke survivors dependent on others. Much of this support comes from informal carers. Research has demonstrated the importance of these carers to survivors’ recovery but also suggests that caregiving has adverse consequences. Meta-ethnography was applied to review qualitative research looking at informal stroke carers’ experiences and responses to caring. Electronic databases from 2006 to 2009 were searched and after application of inclusion and exclusion criteria, seven studies were reviewed.

The experience of caring for stroke survivors centres around change and loss overlaid with uncertainty. Change includes changes in roles and relationships. Losses include former relationships, autonomy and taken-for-granted futures. These challenge carers’ perception of their identity.

Carers respond cognitively and practically and attempts to reconstruct their lives may lead to acceptance and adjustment. This process is one of biographical disruption for carers but can result in personal growth.

If carers and stroke survivors are to be supported, acknowledging specific issues including role and relationship changes and perceptions of reduced autonomy may be more valuable than attempting to reduce carer burden or strain. Clinicians frequently only see families over short periods and may therefore have little understanding of the major, long-term disruptive impact of caregiving. If professionals working with families of stroke survivors are made aware of this and of the necessity for carers to come to terms with their changed roles and identities, they will be better equipped to understand and respond to carers’ practical and emotional needs.

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A grounded theory longitudinal study of carers’ experiences of caring for people with dementia

Introduction: Increasingly the provision of care for older people with dementia has shifted from institutions to the community. This has resulted in an increase in burden and a reduction in autonomy for those who care for these individuals.

Aims: This study sought to identify, describe and explore the changes in the carers’ experiences of looking after a relative living with dementia, and the effects of caring on the carers’ autonomy and health over time.

Research Methods: A longitudinal, grounded theory approach in three phases was used. In-depth interviews were conducted with six spouses at the beginning, at six months and at eighteen months. A constant comparative analysis of taped and transcribed interviews was used.

Findings: Four categories emerged: My Life Changed, Commitment, Responsibility and Duty, and Support. The core category My Life Changed was identified as representing the beginning of the caregiving journey; and the learning from experience that occurred as a consequence of that journey, offering a new perspective on the experience of carers. Commitment refers to a deepened and sustained element; Responsibility and Duty increases over time and finally Support refers to the fluctuating nature of help provided by formal and informal sources. All participants experienced changes in the caregiving journey; the degree and nature of necessary adaptations varied.

Conclusions: A Theory of Caring emerged, but what changes were experienced did not appear to conform to any fixed pattern. All carers learned by experience to manage their situations. For all carers their autonomy and health was challenged.

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Family stories of end-of-life cancer care when unable to fulfill a loved one's wish to die at home

Control over place of death is deemed important, not only in providing a “good death,” but also in offering person-centered palliative care. Despite the wish to die at home being endorsed by many, few achieve it. The present study aimed to explore the reasons why this wish is not fulfilled by examining the stories of ten individuals who lost a loved one to cancer.

We adopted a narrative approach, with stories synthesized to create one metastory depicting plot similarities and differences.

Stories were divided into four chapters: (1) the cancer diagnosis, (2) the terminal stage and advancement of death, (3) death itself, and (4) reflections on the whole experience. Additionally, several reasons for cessation of home care were uncovered, including the need to consider children's welfare, exhaustion, and admission of the loved one by professionals due to a medical emergency. Some participants described adverse effects as a result of being unable to continue to support their loved one's wish to remain at home.

Reflections upon the accounts are provided with a discussion around potential clinical implications.

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Paradoxes in the Care of Older People in the Community: Walking a Tightrope

The expansion of the older population suggests that there will be significant numbers in need of care and support in their own home environment. Yet, little is known about the kind of situations professionals are faced with and how they intervene in the living environment of older people. Qualitative data were collected over a period of 1.5 years from a multi-disciplinary community-based geriatric team in the Netherlands, and participant observations carried out. Forty-two cases discussed within the team meetings were analysed. Results demonstrate that providing care to older people is a dynamic process and revolves around various paradoxes as experienced by professionals. This is illustrated by presenting three paradoxes that emerged within the data: respecting autonomy versus preserving safety; the care needs of the care recipients versus the capacity of their informal carers to cope; and holding a formal orientation versus a tailored orientation on tasks. Providing care in the home environment of older people requires from professionals a continuous anticipation of (un)expected evolutions in situations of their care recipients. In order to optimally support older people professionals need ‘professional discretion’. They must be supported to systematically reflect on and legitimize their intervention strategies.

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Does availability of informal care within the household impact hospitalisation?

This study assesses the effect of having informal support available at home on inpatient care use in Switzerland. The main contributions are to consider the availability of care regardless of its source, measured by multiple-adult living arrangements, and to examine this effect by type of inpatient care and source of potential support. A two-part model with region and time fixed effects is estimated to determine the impact of informal care availability on the likelihood of hospitalisation and length of stay, conditional on hospitalisation. The analysis is conducted on a sample of individuals aged 18+ from four waves of the Swiss Household Panel survey (2004–2007). Overall, availability of informal care has no impact on the likelihood of hospitalisation but does significantly reduce length of stay by 1.9 days. Available support has no effect on the shortest stays (up to 10 days), but has a significant impact on acute care stays up to 30 days and longer stays. Additionally, the effect does not significantly vary whether the source of informal support is a spouse only, a spouse and other adults, or other adults only. These results indicate that social changes leading to an expansion in the proportion of one-person households may increase future inpatient care use.

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Burdens of Family Caregiving at the End of Life

A patient's ability to be cared for and to die at home is heavily dependent upon the efforts of family caregivers. Considerable stresses are associated with such caregiving, including physical, psychosocial and financial burdens. Research has shown that unmet needs and dissatisfaction with care can lead to negative outcomes for caregivers. While many family caregivers also report caregiving as life-enriching, some report that they would prefer alternatives to care at home, primarily because of these associated burdens. Little is known about which interventions are most effective to support family caregivers ministering palliative care at home. Well-designed studies to test promising interventions are needed, followed by studies of the best ways to implement the most effective interventions. Clinically effective practice support tools in palliative home care are warranted to identify family caregiver needs and to ensure that patients and their family caregivers have a choice about where care is provided.

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A structured multicomponent group programme for carers of people with acquired brain injury: effects on perceived criticism, strain, and psychological distress

OBJECTIVES: The purpose of this study was to examine whether a brief structured multicomponent group programme for carers of people with acquired brain injury (ABI) was effective in reducing carer distress, strain, and critical comments between carer and person with an ABI compared to a waiting list control condition. DESIGN: Waiting list controlled study. Pre- and post-test design with outcomes measured at induction, at the end of the intervention, and at the 3-month follow-up.

METHODS: One hundred and thirteen carers took part in the study: 75 carers in the intervention group and 38 in the waiting list control group (2:1 ratio). All participants completed assessments of caregiver strain (Caregiver Strain Index), perceived criticism towards and from the person with an ABI (Perceived Criticism Scale), and psychological distress (Hospital Anxiety and Depression Scale). The person with an ABI was also assessed on the Functional Independence Measure/Functional Assessment Measure.

RESULTS: Using an intention to treat analysis, there were significant effects of group (intervention vs. waiting list control) at the 3-month follow-up on carers' perceptions of stress and strain resulting from caring, and perceptions of criticism received by the carer from the person with an ABI. A subsequent per-protocol analysis showed an additional reduction at 3 months in levels of criticism expressed towards the person with an ABI by the carer. There was no significant effect of the intervention on psychological distress.

CONCLUSIONS: The structured multicomponent carers programme showed beneficial effects in terms of reducing carer strain and in the reduction of elements of perceived criticism at the 3-month follow-up; however, it did not significantly affect psychological distress in carers, suggesting the need for additional support for this group of carers.

STATEMENT OF CONTRIBUTION: What is already known on this subject? A number of studies have suggested that carers of people with acquired brain injury (ABI) experience greater levels of carer burden and mental health difficulties than carers of other patient groups. Previous interventional studies on ABI are few, and such studies have diverged in the extent to which they have been oriented towards education, psychological support, or management of behavioural difficulties, making results somewhat difficult to apply in community health settings with this potential client group. What does this study add? We develop, describe, and evaluate a brief structured multicomponent carers' training and support programme for carers of people with ABI. Not all outcomes were affected positively by the intervention. While the intervention successfully reduced carer strain and critical comments, distress did not significantly reduce compared to people in a waiting list control group. Carers who were spouses/partners and carers who were parents exhibited comparable levels of strain, distress, and perceived criticism. Younger carers reported significantly higher levels of distress and carer strain at induction to the programme. The positive effects of the programme were maintained for at least 3 months, suggesting that it may have initial validity for improving some of the negative aspects of the carer experience.

© 2015 The British Psychological Society.

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Caring for carers: recognising, valuing and supporting the caring role

This strategy has been developed around six key areas of concern, which were identified during a period of consultation with carers. These include the identification of those acting in a caring role, information for carers, support services, the special needs of young carers, training and employment.  It is estimated that there are over 185,000 unpaid carers in Northern Ireland. Their contribution to health and social care cannot be overstated. This strategy sets out a vision of what needs to be done to provide those carers with the practical support they want and need to allow them to continue caring and, at the same time, to have as much access as possible to the same opportunities that the rest of us enjoy.

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Use of Alzheimer family support group by community-residing caregivers

This paper describes the author’s experience as a new co-facilitator for an Alzheimer’s Disease Family Support Group and reviews the preliminary phase of group practice and the dynamics of the beginning phase of co-facilitating the Alzheimer’s Family Support Group. The paper reviews the needs that Alzheimer Support Group would meet, purpose of the group, agency and sponsorship support for Alzheimer Support Group, recruitment, group composition, group timing and structure, leadership of group, orientation of group members, content of group meetings, group sessions, and anticipated obstacles, and concludes with the importance of empowerment-oriented social workers who share the message that change is possible with others who are struggling, while working side-by-side with them to achieve changes and provide a new beginning – a new path for caregivers – a path of self discovery. As Alzheimer’s disease progresses caregivers and loved ones of people with the disease are often challenged on a daily basis – emotionally, mentally, and physically. Being with other people in similar situations encourages group members to share information, exchange coping skills, give and receive mutual support, vent their frustrations and share their success stories. Caregiving for a person with cognitive impairments can be a very diffi cult task, but knowing that you are ‘all in the same boat’ provides the life preserver to the caregiver – giving nourishment to the soul.

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Children in exclusion zone

The author argues that funding for young carers' support should be ring-fenced to avoid that possibility that British councils may use the budget to fend off the next budgetary crisis. He describes young carers as children who take on responsibility for their families, acting as main carers for their disabled or chronically ill parents and siblings. The government has funded initiatives to support young carers. However, he notes that government aims to transfer this funding to local authorities.

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Caregiver's burden, depression and support as predictors of post-stroke depression: a cross-sectional survey

To examine the effects of caregiver's burden, depression, and support on post-stroke depression (PSD), cross-sectional data were obtained from an epidemiologic survey of 225 stroke survivors and their caregivers living in Seoul, Korea. Multivariate analyses showed that, taking the clinical status of patients into account, caregiver's burden, depression and support were related to higher PSD. Perceived burden exerts adverse effects on PSD through its influence on the depression in caregivers. Hence, the care of stroke survivors that incorporates the care of caregivers is likely to reduce the risk of post-stroke depression in patients.

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Informal primary carers of stroke survivors living at home-challenges, satisfactions and coping: a systematic review of qualitative studies

Purpose. To summarize qualitative studies from the last decade that focus on experiences of caring for stroke survivors and to describe challenges, satisfactions and coping strategies.

Methods. A systematic review of qualitative studies identified from English language medicine, nursing and psychology databases from 1996–2006 was undertaken.

Results. Seventeen qualitative studies fitting the inclusion and exclusion criteria, mostly from the USA, were identified. All used carer interviews. These studies corroborate the quantitative research, commonly describing difficulties including emotional responses, uncertainty and associated information and training needs. However, compared with quantitative research, qualitative studies provide a more detailed, complete picture of carers' experiences and identify additional areas including role and relationship changes, positive outcomes and coping strategies.

Conclusions. Qualitative studies add significantly to our understanding of carers' experiences. Caring for stroke survivors is often challenging but focusing on the difficulties and not drawing attention to successful management strategies and satisfaction reported by carers, limits understanding and reduces the chances of providing appropriate support. Future qualitative research should consider the implications of the timing of collection more carefully and should move away from simple content or thematic analysis which tends to emphasize similarities amongst carers and should now focus on understanding carer diversity. Acknowledging this diversity should maximize the chances of providing appropriate support.

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Palliative care in dementia: caring at home to the end

In this second of two articles reporting on her research, Jenny Henderson argues that adequate support should be given to carers who wish to care for a person with end-stage dementia at home

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Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources

Background: Approximately 10% of the UK population have an unpaid caring role for a family member or friend. Many of these carers make a significant contribution to supporting patients at the end of life. Carers can experience poor physical and psychosocial wellbeing, yet they remain largely unsupported by health and social care services. Despite initiatives for general practices to identify carers and their needs, many remain unidentified. Neither are carers self-identifying and requesting support. This study set out to explore the barriers to, and consider strategies for, identifying carers in primary care.

Methods: We integrated findings from three data sources – a review of the caregiving literature; a workshop with researchers who have undertaken research with those caring at the end of life, and focus groups with carers and health professionals.

Results: Three categories of barrier emerged. 1) Taking on the care of another person is often a gradual process, carers did not immediately identify with being a ‘carer’ – preferring to think of themselves in relational terms to the patient e.g. spouse, sibling, son or daughter. Often it was health and social care professionals who encouraged carers to consider themselves as an unpaid carer. 2) As the cared-for person’s condition deteriorated, the caring role often became all-encompassing so that carers were managing competing demands, and felt unable to look after their own needs as well as those of the cared-for person. 3) There was ambiguity about the legitimacy of carer needs and about the role of the primary health care team in supporting carers, from both the perspective of the carers and the health professionals. GPs were thought to be reactive rather than proactive which discouraged carers from asking for help.

Conclusions: The needs of carers have to be legitimised to ensure primary care staff are proactive in their approach and carers are empowered to utilise the support available. Strategies to identify carers have to be sensitive to the complex dynamics of a caring relationship as well as the primary care context. Identification is a key factor in improving support for carers themselves and to enable them to support the patient.

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Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy

The purpose of this guidance is to secure the implementation of the Adult Autism Strategy “Fulfilling and Rewarding Lives: The Strategy for Adults with Autism in England” 2010 as updated by Think Autism (2014) by giving guidance to Local Authorities, NHS Foundation Trusts and NHS bodies. The guidance focuses on the areas which section 2 of the Autism Act 20097 requires to be addressed, in each case identifying what Local Authorities, Foundation Trusts and NHS bodies are already under a duty to do under legislation, what they are expected to do under other existing guidance, and what they should do under this guidance. Local Authorities, NHS bodies and Foundation Trusts should already be doing much of what is expected of them in complying with this guidance as they should have followed the 2010 statutory guidance (which this guidance builds on and replaces). 

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An outcomes focus in carer assessment and review: value and challenge

A focus on outcomes and a desire to improve assessment and support to carers are central to government policy, crystallized in the 2000 Carers and Disabled Children Act. This paper explores the benefits and challenges of implementing an outcomes approach to carer assessment and review, highlighted by a research and development project, undertaken in partnership with one local authority. The project developed and tested research‐based practice tools which aimed to promote carer‐centred practice, together with clarity in communication and recording of outcomes intended and achieved. Findings indicated that practice could be enhanced with the help of a clear conceptual framework and tools, flexibly and sensitively used to assist discussion and decision‐making with carers about outcomes. Information about outcomes, aggregated from individual records, was perceived as potentially useful for informing service development. Some significant obstacles and challenges also emerged; not least, the subtle but significant culture shift required, and the additional time needed to effectively identify and address outcomes with carers. A number of factors were highlighted as important in introducing such an approach: collaboration with, and between, all stakeholders; training and support for practitioners to include practice in recording outcomes, and opportunities for continuing discussion and reflection during implementation.

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