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Satisfaction and caring

The following resources examine the satisfactions people derive from caring, or satisfaction with particular support.

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You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).
 

A cross-sectional study on spouse and parent differences in caregiving experiences of people living with schizophrenia in rural China

Background Conflicting evidence exists on whether parent or spouse caregivers experience better outcomes when caring for family members with schizophrenia. The current study aims to examine relative caregiving experiences and impacts of spouse and parent caregivers for people living with schizophrenia (PLS) in China. Methods A cross-sectional study was conducted in a sample of 264 community-dwelling primary family caregivers of PLS. Face-to-face interviews were conducted to collect information on family caregiving activities; negative caregiving impacts including objective and subjective burden, and caregiver psychological distress such as depression and anxiety; positive caregiving impacts including caregiving rewarding feelings, and family functioning for spouse and parent caregivers. Results Both types of caregivers report engaging in similar caregiving activities and report comparable levels of objective burden. However, parent caregivers report significantly higher subjective burden than spouse caregivers (b=7.94, 95%CI:2.08, 13.80, P<0.01), which is also reflected in significantly higher depression (b=3.88, 95%CI:1.35, 6.41, P<0.01) and anxiety (b=2.53, 95%CI: 0.22, 4.84, P<0.05), and lower family functioning (b=-1.71, 95%CI: -2.73, -0.49, P<0.01). Despite these differences, both groups of caregivers report comparable rewarding feelings about caregiving. Conclusions Our findings have implications for family caregivers globally, but especially for countries that adhere to Confucian cultural values and provide guidance for future family intervention programs. Such programs may do well to incorporate cultural values and beliefs in understanding caregiving and kinship family dynamics so as to support family caregivers, and in particular, the specific vulnerabilities of parent caregivers.

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Perceptions About Technologies That Help Community-Dwelling Older Adults Remain at Home: Qualitative Study

BACKGROUND: The population of Europe is aging rapidly. Most community-dwelling older adults (CDOAs) want to remain in their homes, particularly those experiencing functional decline. Politicians and academics repeatedly praise technological instruments for being the preferred solution for helping older adults with deteriorating health to remain at home. OBJECTIVE: This study aimed to understand the perceptions of CDOAs and their informal caregivers (ICs) and professional caregivers (PCs) about technologies that can help keep older adults at home. METHODS: This qualitative study used personal interviews, focus groups, and photo-elicitation interviews to better understand the perceptions of a convenience sample of 68 CDOAs, 21 ICs, and 32 PCs. RESULTS: A fraction of CDOAs did not perceive technological instruments to be a very useful means of helping them remain at home. However, the ICs and PCs were more positive. The CDOAs preferred and were more willing to adopt technologies related to their mobility and safety and those that would help slow down their cognitive decline. The ICs preferred technological aids that assist in the activities of daily living as well as safety-related technologies for detecting falls and helping to locate disoriented older adults. The PCs preferred integrated communication and information systems to improve collaboration between all stakeholders, housing equipped with technologies to manage complex care, high-performance ancillary equipment to transfer people with reduced mobility, and surveillance systems to ensure safety at home. CONCLUSIONS: Although our study reports that CDOAs have limited interest in innovative technologies to help them remain at home, their technological skills will undoubtedly improve in the future, as will those of ICs and PCs. Technological tools will play an increasingly important role in home health care. ©Henk Verloo, Thomas Kampel, Nicole Vidal, Filipa Pereira. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 04.06.2020.

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An evaluation study of caregiver perceptions of the Ontario's Health Links program

Introduction In 2012, the Ontario government launched Health Links (HL), which was designed to integrate care for patients with multimorbidity and complex needs who are high users of health services. This study evaluated perceptions of family and friend caregivers of patients enrolled in the HL program. Research questions included: What are (a) characteristics of caregivers of patients enrolled in HL (b) caregivers' perceptions of the program in relation to HL's guiding principles (patient and family-centred care, accessibility, coordination of services, and continuity of care and care provider) and (c) caregivers' perceptions of the impact of HL on themselves and their care recipient? Methods This study involved a survey and qualitative, semi-structured interviews. HL guiding principles (patient and family-centered care, accessibility, coordination of services, and continuity) guided the analysis. Results Twenty-seven surveys and 16 qualitative interviews were completed. Caregivers reported high levels of strain [Modified Caregiver Strain Index (MCSI) 15.5 (SD 7.03)], mild anxiety [Generalized Anxiety Disorder (GAD 7), 9.6 (SD 6.64)] and depression [Center for Epidemiological Studies Depression Scale (CES-D 10), 11.9 (SD 8.72)]. Regarding the guiding principles, most caregivers had a copy of the HL patient's care plan, although some caregivers noted that their needs were not included in the plan, nor were they asked for input. Caregivers found the program's home and phone visits accessible. Despite minimum wait times for community-based services, other access barriers persisted, (i.e., out-of-pocket costs). HL provided well-coordinated patient services, although some perceived that there was poor team communication. Caregiver perceptions varied on the quality of care provided. Provider continuity provided caregiver relief and patient support: A lack of continuity was related to changes in care coordinators and weekend staff and attrition. Conclusions Caregivers of HL patients appreciated patient- and family-centred, accessible, consistent, coordinated and team-based approaches in care. Providers and decision-makers are urged to ensure that programs aimed at high system users address these core concepts while addressing caregivers' needs.

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Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis: Relational commitment, caregiving burden, and prorelational behavioral tendencies

Background: Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis (MS) is important for continued care and support. Previous studies have examined relational satisfaction in terms of well-being and quality of life of informal caregivers. Based on the Rusbult investment model, we directly studied the relational satisfaction of spousal/partner informal caregivers of individuals with MS. In doing so, we investigated possible effects that commitment to relationship, caregiving burden, and prorelational behavioral tendencies might have on relational satisfaction. Methods: Nine hundred nine adult spousal/partner informal caregivers of people with MS completed measures of relational satisfaction (Kansas Marital Satisfaction Scale), commitment to relationship (15-item commitment measure), caregiving burden (Zarit Burden Interview), and prorelational behavioral tendencies (adapted Prosocial Tendencies Measure). Participants also provided demographic information (age, sex, duration and type of relationship [spouse, partner]). Results: Structural equation modeling highlighted commitment to the relationship as the strongest predictor of relational satisfaction. Caregiving burden was found to affect relational satisfaction directly and through commitment to relationship. Prorelational behavioral tendencies were found to affect less relational satisfaction. Conclusions: Commitment to relationship, namely, intent to persist, had the highest positive effect on satisfaction. Caregiving burden was found to have a two-way negative relationship to commitment to relationship. These findings suggest that specialists should enhance the intent-to-persist aspect of commitment because it seems to have an alleviating effect regarding caregiving burden (which itself negatively affects relational satisfaction). 

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Experiences of Caregivers Caring for a Family Member Who Is Using Hemodialysis

In this qualitative phenomenological study using a purposive sample, six caregivers of patients on hemodialysis were interviewed about their experiences of caring for a family member who uses hemodialysis. Six major themes and 12 subthemes were identified. Perceptions of caregivers are that caregiving is hard work and stressful; however, caregivers found the experience to be meaningful, even though the stress may interfere with their own health status. Study limitations include a small sample that may not represent the entirety of caregivers' perspectives. Implications for practice include developing informal and formal support systems and exercise programs that help this population manage the stress associated with caregiving for family members using hemodialysis.

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Health literacy and health communication training for underserved patients and informal family caregivers

Communication training effectiveness for health care providers has been well documented, however patient and caregiver training may present a prime opportunity to mitigate communication challenges that provider-only training cannot. The aim of this study is to describe the multi-step process of adapting a national, provider, health communication training program (COMFORT) for use with underserved patients and caregivers who (1) are not regular consumers within health care systems and/or (2) do not have ready access to providers. We examine three iterations of training feedback for implementation in future training. 

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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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Carers' experiences of involuntary admission under mental health legislation: systematic review and qualitative meta-synthesis

Background Carers are key providers of care and support to mental health patients and mental health policies consistently mandate carer involvement. Understanding carers' experiences of and views about assessment for involuntary admission and subsequent detention is crucial to efforts to improve policy and practice. Aims We aimed to synthesise qualitative evidence of carers' experiences of the assessment and detention of their family and friends under mental health legislation. Method We searched five bibliographic databases, reference lists and citations. Studies were included if they collected data using qualitative methods and the patients were aged 18 or older; reported on carer experiences of assessment or detention under mental health legislation anywhere in the world; and were published in peer-reviewed journals. We used meta-synthesis. Results The review included 23 papers. Themes were consistent across time and setting and related to the emotional impact of detention; the availability of support for carers; the extent to which carers felt involved in decision-making; relationships with patients and staff during detention; and the quality of care provided to patients. Carers often described conflicting feelings of relief coupled with distress and anxiety about how the patient might cope and respond. Carers also spoke about the need for timely and accessible information, supportive and trusting relationships with mental health professionals, and of involvement as partners in care. Conclusions Research is needed to explore whether and how health service and other interventions can improve the involvement and support of carers prior to, during and after the detention of family members and friends.

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Estranged relations: Coercion and care in narratives of supported decision-making in mental healthcare

Supported decision-making has become popular among policymakers and mental health advocates as a means of reducing coercion in mental healthcare. Nevertheless, users of psychiatric services often seem equivocal about the value of supported decision-making initiatives. In this paper we explore why such initiatives might be rejected or ignored by the would-be beneficiaries, and we reflect on broader implications for care and coercion. We take a critical medical humanities approach, particularly through the lens of entanglement. We analyse the narratives of 29 people diagnosed with mental illness, and 29 self-identified carers speaking of their experiences of an Australian mental healthcare system and of their views of supported decision-making. As a scaffolding for our critique we consider two supported decision-making instruments in the 2014 Victorian Mental Health Act: the advance statement and the nominated person. These instruments presuppose that patients and carers endorse a particular set of relationships between the agentic self and illness, as well as between patient, carer and the healthcare system. Our participant narratives instead conveyed 'entangled' relations, which we explore in three sections. In the first we show how ideas about fault and illness often coexisted, which corresponded with shifting views on the need for more versus less agency for patients. In the second section, we illustrate how family carers struggled to embody the supported decision-making ideal of the independent yet altruistic nominated person, and in the final section we suggest that both care and coercion were narrated as existing across informal/formal care divisions. We conclude by reflecting on how these dynamic relations complicate supported decision-making projects, and prompt a rethink of how care and coercion unfold in contemporary mental healthcare. 

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Carers’ experience of using assistive technology for dementia care at home: a qualitative study

OBJECTIVE: Assistive technology (AT) can help carers (family, friends and neighbours) and people with dementia to stay well and safely at home. There are important gaps in what we know about experience of using AT from the perspective of carers of persons with dementia. This study investigates carers' experience of using AT in supporting and caring for persons with dementia who live at home. DESIGN: Qualitative phenomenological study with semi-structured interviews to achieve data saturation and thematic analysis to identify key themes. SETTING: Community-based within the UK. PARTICIPANTS: Twenty-three (14 women, nine men) adult carers of persons with dementia who have used at least one AT device. RESULTS: All participants reported benefiting to varying degrees from using AT. There were five themes and 18 subthemes that highlighted reasons for using AT and use of AT over time. Providing care for a person with dementia, motivation for using AT, changes to roles and routines, carer knowledge and skills for using AT and social, environmental and ethical considerations were the main themes. This study showed that AT can provide reassurance and support for carers of persons with dementia but there are difficulties with acquiring and continued use of AT as dementia progresses. CONCLUSIONS: Carers consider AT as an adjunct to care they provided in caring for a person with dementia. Use of AT should be considered in the personal, social and environmental context of persons with dementia and their carers. Further research and policy interventions are needed to address best use of resources and guidance on data sharing and data protection while using AT.

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Care organising technologies and the post-phenomenology of care: An ethnographic case study

Care organising technologies are software applications that are intended primarily for informal carers, to help organise, document and coordinate caring work. These may be purchased privately or provided as part of state support. Take-up to date remains low. Based on empirical case studies of three such technologies and drawing on post-phenomenology and political science, we examined people's experience of caring when caring technologies find a way into their lives. Our findings show how care organising technologies have evolved in a political context that assumes informal support will supplement and sometimes substitute for state support. Technologies were largely designed to foreground the technical and organisational aspects of care such as planning meals, coordinating medication, and allocating and monitoring tasks among carers. For carers, the result was often a flattening of the landscape of care such that the socio-emotional work of caring was rendered invisible and relations between cared-for and caregiver were configured in narrow transactional terms. For a small number of carers, the focus on tasks was out of tune with their (often emotionally charged) experiences of care and led to active rejection of the technology. However, we also found examples of caregivers and the individuals they cared for using technologies adaptively to facilitate and embed existing care relationships. In these examples, the material/technical, socio-emotional and bodily aspects of caring were interwoven with the situated context of close, unique and evolving relationships. We conclude that the design and development of caring technologies would benefit by being informed by a broader orientation of caring as a relational practice. 

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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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Dying at home of cancer: Whose needs are being met? the experience of family carers and healthcare professionals (a multiperspective qualitative study)

Objectives Supporting patients to die in the place of their choosing is an important aspect of end of life care. Our study set out to answer the question: 'How does the home environment influence perceptions of quality of death, and the experience of caring for the dying at home, for family carers and healthcare professionals (HCPs)? Methods A qualitative approach, using multiperspective interviews with bereaved family carers (n=15) and a nominated HCP (n=13) ensured depth of insight gained into supporting a home death. The semistructured interviews were audio recorded, transcribed verbatim and analysed using Framework. Results We found that the home environment enabled normality, a sense of control and individualised care which family carers often perceived as contributing towards a good death. However, the home environment created challenges for both family carers and HCPs, due to the differing and at times conflicting needs of the dying person and their family carers. Conclusions We have shed light on the complexity of balancing the demands and the satisfaction of caring for someone dying at home. The ability to manage these conflicting needs influenced whether carers perceived the home setting as the best place for the person to have received care in their last days of life. 

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The relationship between the positive aspects of caring and the personal growth of caregivers of patients with advanced oncological illness Postraumattic growth and caregiver

Objective Examine the relationship between the positive aspects of care and the personal growth of caregivers of patients with advanced oncological illness. Methods This research was a quantitative study with a transversal design. One hundred (100) informal caregivers filled out self-applied questionnaire on resilience, aspects of care, emotional distress, spirituality, and posttraumatic growth. Descriptive statistics were applied to the data, later correlation, and regression, and comparative analyses were conducted. Results The participants were mainly women (86%) with an average care period of 12 months. The average age was 46.52 years. The highest scores were evidenced in positive aspects of caretaking, spirituality, personal growth, and distress, while the lowest score was seen in questions related to resilience. There was a negative inverse correlation among emotional distress, resilience, spirituality, and posttraumatic growth (p < .05) and a positive correlation among resilience, spirituality, posttraumatic growth, and the positive aspects of caretaking (p < .01). There were significant differences among the items related to emotional distress, resilience, and posttraumatic growth. The linear regression analysis showed that as resilience, spirituality, and the positive aspects of care increased, so did posttraumatic growth. Significant results To promote the perception of benefits among caregivers, resilience and the identification of meaning in the caregiving experience of patients with advanced oncological illness can be considered protective factors favoring adaptation and reducing negative moods.

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Effect of an innovative model of complexity care on family caregiver experience Qualitative study in family practice

Objective To investigate the experiences of family caregivers who participated in an innovative model of interprofessional team-based care specifically designed for elderly patients with complex care needs. Design Qualitative study. Setting Large academic family practice in Toronto, Ont. Participants Family caregivers of elderly patients who had attended the IMPACT (Interprofessional Model of Practice for Aging and Complex Treatments) clinic (N=13). Methods Individual semistructured interviews, which were conducted faceto-face, audiorecorded, transcribed verbatim, and analyzed using the constant comparative method. Main findings Family caregivers who attended the IMPACT clinic believed it enhanced caregiver experience and capacity. Caregivers experienced increased validation and engagement with the treatment team. Feelings of isolation were reduced, resulting in increased confidence and greater feelings of empowerment in their caregiver role. Conclusion White the needs and value of caregivers are increasingly acknowledged, health care teams continue to struggle with how to relate to and engage with family caregivers-how best to support them and work with them in the context of their family members' care. Interprofessional teams who adopt the IMPACT model-providing synchronous, real-time interventions that include the caregiver-can facilitate increased caregiver capacity, confidence, and empowerment.

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Patients, caregivers and health‐care professionals’ experience with an interdisciplinary intervention for people with multimorbidity in primary care: A qualitative study

Background Multimorbidity challenges the health‐care system and requires innovative approaches. In 2015, a 4‐month patient‐centred interdisciplinary pragmatic intervention was implemented in primary care with the aim of supporting self‐management for patients with multimorbidity.Objective To explore the perceptions and experiences of health‐care professionals, patients and their caregivers with a 4‐month patient‐centred interdisciplinary pragmatic intervention in primary care.Design A descriptive, qualitative study using semi‐structured interviews was conducted. Setting and participants A purposive sample of 30 participants was recruited from seven family medicine groups including patients, caregivers and health‐care professionals (HCPs). Interviews were analysed using Thorne's interpretive description approach. Results Findings were grouped into the benefits and challenges of participating in the intervention. The programme allowed patients to adopt realistic and adapted objectives; to customize interventions to the patient's reality; and to help patients gain confidence, improve their knowledge, skills and motivation to manage their condition. Interprofessional collaboration eased the exchange of information via team meetings and electronic medical records. Challenges were related to collaboration, communication, coordination of work and integration of newly relocated HCPs mainly due to part‐time assignments and staff turnover. HCPs part‐time schedules limited their availability and hindered patients’ follow‐up. Discussion and conclusion This intervention was useful and rewarding from the HCPs, patients and caregivers’ perspective. However, to ensure the success of this complex interdisciplinary intervention, implementers and managers should anticipate organizational barriers such as availability and time management of relocated HCPs.

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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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Care providers’ and patients’ attitudes toward using electronic-patient reported outcomes to support patients with traumatic brain injury: a qualitative study (PRiORiTy)

Objectives: To (a) identify residual symptoms and deficits resulting from a traumatic brain injury (TBI) and impact on patients’ and their families’ quality of life; (b) explore views and experience of care providers, researchers, patients, and carers of using PROMs; and (c) explore their attitudes toward reporting symptoms and impacts on an electronic platform. Methods: Qualitative semi-structured interviews with people with TBI and their carers; health-care professionals, researchers, and third sector staff members working with people with TBI. Results: Symptoms and long-term impacts of TBI included cognitive problems, difficulties functioning, anxiety, and depression. PROMs were seen as improving knowledge of residual symptoms and their impact post-TBI but not always accurately reflecting patients’ residual problems. Challenges to completing PROMs were cognitive impairment and lack of insight into condition. Perceived advantages of an electronic platform included easy data collection; flexibility; improving workflow; and the ability to send/ receive feedback and reminders easily. Suggested features of an electronic platform included simple layout, lay language, short questions, few items on the screen, and capability to send/receive feedback and additional information. Conclusion: There is a demand for reporting symptoms and their impact electronically, providing the layout is kept simple and feedback from clinicians is provided. 

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A Snapshot of Social Support Networks Among Parental Caregivers of Adults with Autism

This study provided a description of types and dimensions of informal and formal social support among aging parental caregivers of adult children diagnosed with autism spectrum disorder (ASD). Parents participated in a web-based survey regarding use of and satisfaction with social support services for parents or their adult children. Results indicated that many parents participated in autism support groups (27.5%), with psychiatric services (48.8%), counseling (40.6%), and financial assistance (39.7%) the most commonly used formal social supports. Emotional support (88.8%) and informational support (67.5%) were the most common informal social supports used. Professionals who are working with parental caregivers and their adult children diagnosed with ASD should be aware of available social support services to help them find needed services. 

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Informal caregivers’ views on the quality of healthcare services provided to older patients aged 80 or more in the hospital and 30 days after discharge

BACKGROUND: In the European Union (EU), informal caregivers provide 60 per cent of all care. Informal caregiving ranges from assistance with daily activities and provision of direct care to helping care recipients to navigate within complex healthcare and social services systems. While recent caregiver surveys document the impact of informal caregivers, systematic reviews show that they have unmet needs. Because of the political desire to reduce the length of hospital stays, older patients are discharged from the hospital 'quicker and sicker' than before. The transition between different levels of the healthcare system and the period after hospital discharge is critical for elderly patients. Caregivers' perspectives on the quality of older patients' care journeys between levels of the healthcare system may provide valuable information for healthcare providers and policymakers. This study aims to explore older patient's informal caregivers' views on healthcare quality in the hospital and in the first 30days after hospitalisation. METHOD: We conducted semi-structured individual interviews with 12 participants to explore and describe informal caregivers' subjective experiences of providing care to older relatives. The interviews were then transcribed and analysed thematically. RESULTS: The analysis yielded the overarching theme 'Informal caregivers - a health service alliance - quality contributor', which was divided into four main themes: 'Fast in, fast out', 'Scant information', 'Disclaimer of responsibility' and 'A struggle to secure professional care'. The healthcare system seemed to pay little attention to ensuring mutual understandings between those involved in discharge, treatment and coordination. The participants experienced that the healthcare providers' main focus was on the patients' diseases, although the health services are supposed to view patients holistically. CONCLUSION: Based on the information given by informal caregivers, health services must take into account each person's needs and preferences. To deliver quality healthcare, better coordination between inter-professional care teams and the persons they serve is necessary. Health professionals must strengthen the involvement of caregivers in transitions between care and healthcare. Future work should evaluate targeted strategies for formal caregivers to cooperate, support and empower family members as informal caregivers. 

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Carer experience of end-of-life service provision: a social network analysis

Objective To identify the position of formal service providers in the networks of those providing end-of-life care in the home from the perspective of the informal network. Methods Using third-generation social network analysis, this study examined the nature and strength of relationships of informal caring networks with formal service providers through individual carer interviews, focus groups of caring networks and outer network interviews. Results Service providers were usually highly valued for providing services, equipment, pain management and personalised care for the dying person plus support and advice to the principal carer about both caring tasks and negotiating the health system. However, formal service providers were positioned as marginal in the caring network. Analysis of the relative density of relationships within networks showed that whereas relationships among family and friends had similar density, relationships between service providers and family or friends were significantly lower. Conclusion The results supported the Circles of Care model and mirror the perspective of formal service providers identified in previous research. The research raises questions about how formal and informal networks might be better integrated to increase their effectiveness for supporting in-home care. 

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Brilliant renal care: A really positive study of patient, carer, and staff experiences within an Australian health service

Drawing on a positive organizational scholarship (POS) approach, this paper presents findings from the first of a two-part study exploring user experiences of brilliant renal care within the Regional Dialysis Centre in Blacktown (RDC-B). A world café method was used engaging patients, carers, and staff in conversations about brilliance. Practitioners led the study, seeking to validate their claims that the RDC-B is an exemplar of brilliant care. Pragmatics dominated the fieldwork. Researchers and practitioners collaborated throughout the study, including hosting two world cafés. Key findings from the study are that the RDC-B is completely patient and relationally-centred, with high-quality connections, dedicated and competent staff providing a complete, responsive, and personalized service that is also like being in a family. Drawing on POS, we suggest that relational-centred care requires at the very least high-quality connections and relational coordination to build and sustain the levels of positivity identified in the RDC-B. 

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Allowing Visitors Back in the Nursing Home During the COVID-19 Crisis: A Dutch National Study Into First Experiences and Impact on Well-Being

Objectives: To prevent and control COVID-19 infections, nursing homes across the world have taken very restrictive measures, including a ban for visitors. These restrictive measures have an enormous impact on residents' well-being and pose dilemmas for staff, although primary data are lacking. A Dutch guideline was developed to cautiously open nursing homes for visitors during the COVID-19 pandemic. This study reports the first findings on how the guideline was applied in the local context; the compliance to local protocols; and the impact on well-being of residents, their family caregivers, and staff. Design: A mixed-methods cross-sectional study was conducted. Setting and Participants: In total, 26 nursing homes were permitted to enlarge their possibilities for allowing visitors in their facility. These nursing homes were proportionally representative of the Netherlands as they were selected by their local Area Health Authority for participation. At each nursing home, a contact person was selected for participation in the current study. Methods: A mixed-methods cross-sectional study was conducted, consisting of questionnaire, telephone interviews, analyses of documentation (ie, local visiting protocols), and a WhatsApp group. Results: Variation in local protocols was observed, for example, related to the use of personal protective equipment, location, and supervision of visits. In general, experiences were very positive. All nursing homes recognized the added value of real and personal contact between residents and their loved ones and indicated a positive impact on well-being. Compliance with local guidelines was sufficient to good. No new COVID-19 infections were reported during this time. Conclusions and Implications: These results indicate the value of family visitation in nursing homes and positive impact of visits. Based on these results, the Dutch government has decided to allow all nursing homes in the Netherlands to cautiously open their homes using the guidelines. More research is needed on impact and long-term compliance.

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Exploring a new model of end-of-life care for older people that operates in the space between the life world and the healthcare system: a qualitative case study

BACKGROUND: Innovative service models to facilitate end-of-life care for older people may be required to enable and bolster networks of care. The aim of this study was to understand how and why a new charitably funded service model of end-of-life care impacts upon the lives of older people. METHODS: A multiple exploratory qualitative case study research strategy. Cases were three sites providing a new end-oflife service model for older people. The services were provided in community settings, primarily providing support in peoples own homes. Study participants included the older people receiving the end-of-life care service, their informal carers, staff providing care within the service and other stakeholders. Data collection included individual interviews with older people and informal carers at two time points, focus group interviews with staff and local stakeholders, nonparticipant observation of meetings, and a final cross-case deliberative panel discussion workshop. Framework analysis facilitated analysis within and across cases. RESULTS: Twenty-three service users and five informal carers participated in individual interviews across the cases. Two focus groups were held with an additional twelve participants, and 19 people attended the deliberative panel workshop. Important elements contributing to the experience and impacts of the service included organisation, where services felt they were 'outsiders,' the focus of the services and their flexible approach; and the impacts particularly in enriching relationships and improving mental health. CONCLUSION: These end-of-life care service models operated in a space between the healthcare system and the person's life world. This meant there could be ambiguity around their services, where they occupied a liminal, but important, space. These services are potentially important to older people, but should not be overly constrained or they may lose the very flexibility that enables them to have impact. 

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Design and Preliminary Testing of the Caregiver-Centered Communication Questionnaire (CCCQ)

The study objective was to develop and test a new survey instrument that measures caregiver-centered communication. We developed a questionnaire inspired by the National Cancer Institute framework on patient-centered communication, focusing on family caregiver communication for this tool. The questionnaire includes 5 subscales: exchange of information, relationship with team, emotions, managing care, and decision-making. The initial questionnaire was reviewed by domain experts for face validity and edited further to include 30 items. We administered the modified questionnaire to 115 family caregivers of patients with serious illness in various settings. Cronbach α for the entire scale was 0.97 and ranged from 0.82 to 0.93 for the 5 subscales. Participants found that the survey addressed important concepts and that items were in most cases easy to understand. This instrument provides a structured way to assess caregiver-centered communication, addressing a pressing need for tools that measure the extent to which communication is responsive to the needs and preferences of family caregivers. Further testing and refinement are needed to improve the ease of use and examine the reliability and validity of this measure.

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Caregivers of patients with hematological malignancies within home care: A phenomenological study

The role of caregivers in homecare settings is relevant to the patient’s wellbeing and quality of life. This phenomenon is well described in the literature for the oncological setting but not specifically for that of hematological malignancies. The aim of this study was to explore the experience of primary caregivers of patients with hematological malignancies within home care. We conducted a phenomenological study based on interviews with 17 primary caregivers of hematological patients. Analysis of the contents led to the identification of five main themes. Perhaps, the innovative aspects of this study can be summarized in three points: This service was demonstrated to fulfil the ethical aspects of providing the patient with a dignified accompaniment to the end of life. Secondly, the efficiency of the service and the benefit are directly dependent on the caregivers’ wellbeing, so knowledge of the dynamics and emotions involved can lead to the development and implementation of programs for hematological malignancies. Lastly, a collaborative caregivers–professionals relationship can improve a sense of accomplishment for all parties involved, lessening the family’s frustration related to not having done their best. Home care brings significant benefits for both the patient and the caregivers and fulfils the ethical obligation of providing the patient dignified end-of-life care. 

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Preventive care for physical activity and fruit and vegetable consumption: A survey of family carer expectations of health service delivery for people with a mental health condition

Background: Chronic disease is a leading cause of death globally, where inadequate fruit and vegetable consumption and inadequate physical activity are consistently implicated as key contributing risk factors for such diseases. People with a mental health condition are reported to experience a higher prevalence of such risks and experience an increased morbidity and mortality from resultant chronic disease. Despite guidelines identifying a need for services accessed by people with a mental health condition to provide care to address such health risk behaviours, sub-optimal care is frequently reported suggesting a need for innovative strategies to increase the provision of physical health care. An exploratory study was conducted to examine: 1) family carers' expectations of care provision regarding fruit and vegetable consumption and physical activity by health and community services for people with a mental health condition; 2) carer's own health risk behaviour status and perceptions of the influence of the health risk behaviours on mental health; and 3) possible associations of socio-demographic, clinical and attitudinal factors with carer expectations of care provision for fruit and vegetable consumption and physical activity. Methods: Family carers (n = 144) of a person with a mental health condition completed a cross-sectional survey. Participants were members of a mental health carer support organisation operating in New South Wales, Australia. Results: A high proportion of participants considered care for fruit and vegetable consumption and physical activity respectively should be provided by: Mental health hospitals (78.5, 82.7%); community mental health services (76.7, 85.9%); general practice (81.1, 79.2%); and non-government organisations (56.2, 65.4%). Most participants perceived adequate fruit and vegetable consumption (55.9%), and physical activity (71.3%) would have a very positive impact on mental health. Carers who perceived adequate fruit and vegetable consumption and physical activity would have a positive impact on mental health were more likely to expect care for such behaviours from some services. Conclusions: The majority of participants expected care for fruit and vegetable consumption and physical activity be provided by all services catering for people with a mental health condition, reinforcing the appropriateness for such services to provide physical health care for clients in a systematic manner. 

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Cygnus: a psychoeducational group for carers of people with a personality disorder

National Institute for Health and Care Excellence guidance suggests that carers of individuals with a diagnosis of borderline personality disorder experience high levels of psychological distress, yet few services in the UK offer specific support to this group of carers. This article will describe the development of a psychoeducational carers' group based on schema theory (Young et al, 2003), including the development of the role of carer experts-by-experience as group co-facilitators. Initial outcome data from the pilot suggest that carers are highly satisfied with the group and that it improves their knowledge, understanding and personal well-being.

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Voice‐Controlled Intelligent Personal Assistants to Support Aging in Place

BACKGROUND/OBJECTIVES: Many older adults wish to age in place, and voice‐controlled intelligent personal assistants (VIPAs; eg, Amazon Echo and Google Home) potentially could support unmet home needs. No prior studies have researched the real‐world use of VIPAs among older adults. We sought to explore how older adults and caregivers utilize VIPAs. DESIGN/MEASUREMENT: Retrospective review of all verified purchase reviews of the Amazon Echo posted on Amazon.com between January 2015 and January 2018, with filtering for health‐related older adult key words. Open‐ended reviews were qualitatively analyzed to identify relevant themes. RESULTS: On retrieval, there were 73 549 reviews; and with subsequent key word filtering, 125 total reviews were subsequently analyzed. Five major themes were identified: (1) entertainment ("For two very senior citizens...we have really had fun with Echo. She tells us jokes, answers questions, plays music.); (2) companionship ("A senior living alone...I now have Alex to talk to."); (3) home control; (4) reminders ("I needed something that would provide me with information I couldn't remember well, such as the date, day, or my schedule...I highly recommend for anyone with memory challenges"); and (5) emergency communication. Several felt it reduced burdening caregivers. "...You also feel guilt from fear of overburdening your caregivers. Alexa has alleviated much of this." Specifically, caregivers found that: "By making playlists of songs from her youth whoever is providing care, family or professional caregiver, can simply request the right song for the moment in order to sooth, redirect, or distract Mom." Alternatively, negative reviewers felt the VIPA misunderstood them or could not adequately respond to specific health questions. CONCLUSION: VIPAs are a low‐cost artificial intelligence that can support older adults in the home and potentially reduce caregiver burden. This study is the first to explore VIPA use among older adults, and further studies are needed to examine the direct benefits of VIPAs in supporting aging in place.

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Unmet needs of patients with cancer in their last year of life as described by caregivers in a developing world setting: a qualitative study

Background: Palliative care is in its infancy in most of the developing world. We set out to explore the lived experiences of families and caregivers of recently deceased cancer patients in Trinidad and Tobago and to determine the unmet needs of the patients and what recommendations could be derived to improve the current services. Methods: A phenomenological approach with purposeful sampling was used. Participants were referred by key health professionals. Face-to-face interviews were conducted. Interviews were transcribed verbatim, with analysis and data collection occurring concurrently. Thematic content analysis was used to determine common domains, themes and sub-themes. Results: Interviews were completed with 15 caregivers. All were spouses or children of the deceased. Ages of the deceased ranged from 43 to 93, the average being 65.5 years. The deceased experienced a variety of cancers including lung, colorectal and oesophageal. Unmet needs were identified under 4 domains of institutions, community, the family unit and the wider society. Institutional unmet needs were delayed diagnosis and treatment and poor inter-institution coordination. Medical and nursing care failed in the areas of health care providers' attitudes, pain management and communication. The family unit lacked physical and psychosocial support for the caregiver and financial aid for the family unit. Societal needs were for public education to address myths and cultural beliefs around cancer. Conclusion: There is need for systemic interventions to improve the care of those dying from cancer in Trinidad and Tobago. Stakeholders need to commit to palliative care as a public health priority, implementing education, planning services and mobilizing community resources. 

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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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Separation characterized by responsibility and guilt: Family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities

Aim and objectives: The aim of this study was to explore family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities. Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life. Design: A qualitative design with a phenomenological approach was adopted. Methods: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities. Results: The family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment. Conclusions: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust. 

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Predictors of Unmet Need among Informal Caregivers

Objectives: This study investigates the relationship of caregiver demographics, caregiving intensity, caregiver support use, and aspects of the caregiving situation to a self-reported measure of unmet need among U.S. informal caregivers of older adults living at home with various conditions.; Methods: Response data from 1,558 caregiver participants interviewed by telephone during the December 2016 baseline period of the Outcome Evaluation of the National Family Caregiver Support Program were used. Caregivers who responded "Definitely No" to the question "Are you receiving all the help you need?" were classified as reporting unmet need. Logistic regression was used to find significant factors associated with unmet need among the full sample and among caregivers tiered by three levels of burden.; Results: Unmet need was reported by 22% of the caregivers. In a fully adjusted model, unmet need was predicted by higher levels of caregiving intensity, non-White race of the caregiver, and the caregiver not feeling appreciated by their care recipient. Other predictors associated with unmet need were no use of caregiver educational services, fewer respite hours, not living in a rural area, and caregiver having an education past high school.; Discussion: Caregivers who do not feel appreciated by their care recipient and non-White caregivers should be identified as potential targets for intervention to address unmet need, especially if they are also reporting higher levels of caregiver burden. Understanding the factors associated with self-reported unmet need can assist caregiver support programs in measuring and addressing the needs of informal caregivers to support their continued caregiving.

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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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Predicting self-esteem in informal caregivers of people with dementia: Modifiable and non-modifiable factors

While informal caregivers often feel burdened by the care for a person with dementia, they can also experience positive consequences due to caregiving; caregiver gains. One of these, relatively overlooked, caregiver gains is heightened self-esteem. We assessed the predictive ability of non-modifiable (caregiver sociodemographic- and dementia related-) and modifiable (psychological-) factors for caregiver self-esteem). A cross-sectional study in which 201 caregivers, who spent at least eight hours a week on caring for a community-residing person with dementia, completed a semi-structured interview and five questionnaires. One two-block (1: non-modifiable-; 2: modifiable variables) hierarchic multiple regression analysis was used to assess which variables predicted self-esteem. None of the non-modifiable variables significantly predicted self-esteem. Regarding the modifiable variables, depression and relationship quality with the person with dementia significantly predicted self-esteem (adjusted R2 = .460, β = -.207, p = .015 and β = .632, p < .001 respectively). Caregivers who experience a better relationship quality with the person with dementia, and fewer depression symptoms, experience a higher level of self-esteem. Interventions focused on heightening self-esteem should strive to optimize these factors to enhance the lives of informal dementia caregivers.

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Perceptions of Family Caregivers of Home-Dwelling Persons with Dementia regarding Access to Information and Involvement in Decisions

This cross-sectional study explored factors affecting information about available health services, content of services provided, and involvement in decisions regarding services as perceived by the family caregivers of home-dwelling persons with dementia in Northern Norway. Altogether, 788 family caregivers were invited to participate in a survey, with a response rate of 54.6% (n = 430). The respondents reported modest levels of perceived information and involvement. Few of the expected predictors were associated with the outcomes. Ordinal logistic regression analyses revealed that primary school as the highest level of education and perception of caregiving as moderately or very demanding predicted lower scores on family caregivers' perceived level of information about available services, information on service content, and involvement in decisions. In addition, medium household income predicted lower scores on information about service content. The results may point to mechanisms that create inequalities in the processing of information and involvement in care decisions regarding care arrangements among different caregiver groups. Health authorities should investigate potential social inequalities in complementary health care for home-dwelling persons with dementia.

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'Living Together With Dementia': preliminary results of a training programme for family caregivers

The aim of this article was to present the preliminary results of a training programme for family caregivers of people with dementia at an early to moderate stage living at home - 'Living Together With Dementia'. In this randomised controlled trial, 27 family caregivers who met the inclusion criteria were recruited from the neurology outpatient consultation clinic of a hospital in the north of Portugal and randomised into two groups (control and experimental) between October 2015 and March 2016. The programme 'Living Together With Dementia' was applied to the participants of the experimental group. The strategies used, overload, difficulties and satisfaction of the caregivers were assessed at three different stages (at the beginning and end of the intervention, as well as at follow-up). For the data analysis, quantitative parametric measures were applied. The Health Ethical Commission of the Hospital Centre approved the study, and its protocol and Helsinki Declaration ethical principles were considered throughout the process. In the final assessment, an improvement in the overload and difficulties was confirmed, as was an increase in the caregivers' satisfaction level and an improvement in coping/problem-solving strategies. In the follow-up stage, the results tended to revert towards those of the initial assessment. The programme 'Living Together With Dementia' appeared to be a major contribution enabling family caregivers of people with dementia, although there is a need to develop an efficacy study using a more substantial sample. The programme contributed to a reduction in the overload and difficulties borne by the family caregivers of people with dementia at an early to moderate stage living at home and to increased caregiver satisfaction.

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"It's Like a Cyber-Security Blanket": The Utility of Remote Activity Monitoring in Family Dementia Care

Technologies have emerged that aim to help older persons with Alzheimer's disease and related dementias (ADRDs) remain at home while also supporting their caregiving family members. However, the usefulness of these innovations, particularly in home-based care contexts, remains underexplored. The current study evaluated the acceptability and utility of an in-home remote activity monitoring (RAM) system for 30 family caregivers of persons with ADRD via quantitative survey data collected over a 6-month period and qualitative survey and interview data collected for up to 18 months. A parallel convergent mixed methods design was employed. The integrated qualitative and quantitative data suggested that RAM technology offered ongoing monitoring and provided caregivers with a sense of security. Considerable customization was needed so that RAM was most appropriate for persons with ADRD. The findings have important clinical implications when considering how RAM can supplement, or potentially substitute for, ADRD family care.

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The importance of power, context and agency in improving patient experience through a patient and family centred care approach

Background: Research shows that the way that healthcare staff experience their job impacts on their individual performance, patient experience and outcomes as well as on the performance of organisations. This article builds on this literature by investigating, with multi-disciplinary clinical teams as well as patients and relatives, what factors help or hinder changes designed to improve patient experience. Methods: Qualitative research looking at patient- and family-centred care (PFCC) on two care pathways (stroke and hip fracture) was conducted in England and Wales. A realist approach combined with participatory action research was used to account for the complexity of organisational context and power relations. Multiple methods were used, including documentary analysis, participatory steering groups with staff and patient representatives, observations of the care pathways (n = 7), staff and patient and relative focus groups (n = 8), and hospital staff, patient and PFCC staff interviews (n = 47). Results: Findings highlight multiple factors that support and hinder good patient experiences. Within individual care, paternalistic values and a lack of shared decision-making and patient-centred care still exist. Supportive interdisciplinary teamwork is needed to address issues of hierarchy, power and authority amongst staff and managers. At the organisational level, key issues of waiting times, patient flow, organisational resources and timely discharge affect staff's time and capacity to deliver care. In addition, macro contextual factors, such as finance, policy, targets and measures, set particular limits for improvement projects. Conclusions: Given this context, improving patient experience needs to go well beyond small-scale projects at the micro and meso level to incorporate a more critical understanding of systems, the wider organisational context and how power operates at multiple levels to enable and constrain action. In order to more meaningfully understand and address the factors that can help or hinder activities to improve patient experiences, PFCC frameworks and methods need to account for how power inequities operate and require the adoption of more participatory co-produced and empowering approaches to involve patients, relatives, carers and staff in improving complex healthcare environments. 

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How do clients and (In)formal caregivers experience quality of home care? A qualitative approach

Aim: To explore and understand the views of clients and formal and informal caregivers about the experienced quality of home care for older people. Design: A descriptive qualitative study was conducted using individual interviews. Methods: Six home care clients, four formal and six informal caregivers were recruited from two Dutch home care organizations. Individual, semi‐structured interviews took place between April ‐ November 2018. The INDividually EXperienced QUAlity of Long‐term care framework was used to guide data collection and content analyses. Results: The analyses revealed several important attributes contributing to experienced quality of home care such as a preferred small number of caregivers, perceived sufficient time for care provision and a caring atmosphere facilitating open communication and humour. Participants indicated that care routines fitting with the care receiver's former way of living were important. A more 'close' personal care relationship related to trust, openness and empathy was preferred over a more 'detached' professional care relationship. Conclusion: This study identified a wide range of attributes related to experienced quality of care from the perspectives of clients and formal and informal caregivers in home care. Impact: Care providers are being challenged to structurally assess individual experienced quality of home care. This study underlines the importance of incorporating care preferences and experiences throughout the care process from a relationship‐centred care approach. Relevant care measures and outcomes should be determined to gain insight and further improve individual care provision.

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Family Caregivers' Experiences With Health Care Workers in the Care of Older Adults With Activity Limitations

Importance: Family and unpaid caregivers often play an active role in managing the care of older adults with activity limitations.; Objective: To examine caregivers' experiences with older adults' health care workers.; Design, Setting, and Participants: This survey study constitutes a secondary analysis of a sample of 1916 family and unpaid caregivers to 1203 community-living older adults with activity limitations who participated in the 2017 National Health and Aging Trends Study. Data analysis was performed January to August 2019.; Exposures: Caregiver sociodemographic characteristics, caregiving intensity, and frequency speaking with or emailing older adults' health care workers.; Main Outcomes and Measures: Caregiver-reported experiences when interacting with older adults' health care workers in the prior year, including being listened to, being asked about understanding of treatments, and being asked about help needed in managing older adults' care.; Results: Caregivers (mean [SE] age, 59.4 [0.5] years; 63.7% women) assisting community-living older adults with activity limitations reported that they never (56.3%), sometimes or rarely (33.0%), or often (10.7%) spoke with or emailed older adults' health care workers in the prior year. Most caregivers who interacted with older adults' health care workers reported being always (70.6%) or usually (18.2%) listened to and always (54.4%) or usually (17.7%) being asked about their understanding of older adults' treatments. Fewer caregivers reported being always (21.3%) or usually (6.9%) asked whether they needed help managing older adults' care, and nearly one-half (45.0%) were never asked. Caregivers who interacted with older adults' health care workers often (vs sometimes or rarely) were more likely to report being always or usually listened to (94.8% vs 86.9%; P = .004), being asked about understanding treatments (80.1% vs 69.5%; P = .02), and being asked about needing help (40.8% vs 24.1%; P < .001). No other exposures were consistently associated with caregiver experiences. Measures of caregiving intensity, including caring for an older adult with dementia, were not associated with being listened to or asked about understanding, but were associated with being asked about needed help. Although caregivers of persons with dementia were more likely than caregivers of persons without dementia to report always being asked about needed help (26.9% vs 19.0%), a high percentage in both groups were never asked (41.2% vs 46.5%) (P = .007).; Conclusions and Relevance: These findings reinforce the need for strategies to better support family and unpaid caregivers, who are the main source of assistance to older adults with physical and/or cognitive limitations.

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An exploratory study of the experiences of being both a mental health professional and carer in mental health services in Norway

Introduction: Around 60% of carers of relatives with mental health problems report feeling unrecognised by professional health care and many report a lack of engagement, shared decision making and information sharing. There is a paucity of research examining these issues for carers who are also mental health professionals.; Aim: This was an exploratory study to (i) explore the extent of this role among health service staff, (ii) gather an indication of the issues faced by carers when interacting with the health system, and (iii) test the feasibility of conducting research.; Method: Mental health professionals in mental health services completed an online survey that assessed the frequency, content and satisfaction of the experiences of carers.; Results: The sample comprised 453 mental health professionals (74% female), 52% being carers. Half of carers reported having therapist contact and 25% were satisfied with the contact. Negative experiences were related to Information, Decision making and Continuity of care.; Discussion: There was a high frequency of mental health professionals who were carers. The majority were dissatisfied and this was primarily in relation to communication with services.; Implications For Practice: Improving information sharing through training of staff and identification of the system barriers is likely to enhance experiences for service users and families.

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Experience of family caregivers of hospitalized older people in Kolkata, India

In India, family caregivers (FCs) play a major role in providing care to their older kin during hospitalization. This article explores the challenges encountered by them while providing care in a public hospital. It draws upon empirical insights obtained through interviews with 54 FCs and field observations. The findings show that the hospital was not congenial for FCs and exposes the factors impeding their caregiving role. FC experience was found to be highly complex and fraught with multiple practical challenges during admission, in-hospital treatment, and at discharge. All these had repercussions on various aspects of their own life and well-being like poor health outcomes, financial stress, and social isolation. The article concludes that the needs, preferences, and challenges of the FCs need to be considered to make hospitals conducive for FCs of older people.

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A cross-sectional study of family caregiver burden and psychological distress linked to frailty and functional dependency of a relative with advanced dementia

Psychological health of caregivers of people with dementia is a major public concern. This study sought to determine the relationship between caregiver burden, psychological distress, frailty and functional dependency of a relative with advanced dementia. Persons with dementia and their caregivers (102 dyads) participated in this Portuguese community based cross-sectional study. Data were collected using the Clinical Dementia Rating Scale, a sociodemographic questionnaire, the Zarit Burden Interview, the Brief Symptoms Inventory and the Edmonton Frail Scale. Alzheimer's disease was the most common type of dementia among the recipients of care, who showed moderate (42.2%) to severe (52.9%) dementia. Among them 35.3% exhibited moderate and 45.1% severe frailty. Family caregivers reported moderate (76.5%) to severe burden (18.6%). Psychological distress was very high among family caregivers. Results show that people with dementia exhibited moderate (35.3%) or severe frailty (45.1%) and that a severe frailty was found in people with moderate dementia. A one-way ANOVA was conducted between the Global Severity Index and some sociodemographic variables. ANOVA reached p <.01 for employment status of the caregiver, assistance and professional support, and psychiatric history; and p = 0.01 for caregiver age and years of caregiving. Although caregivers reported benefit from the supportive approach offered by the multidisciplinary home care team, high levels of distress and associated burden were found, which might decrease their capacity to care for the person with dementia and their own health and well-being.

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Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis

Objective: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States.; Methods: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care.; Results: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice.; Conclusion: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.

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Cancer caregivers' experiences of prognosis in Australia: a qualitative interview study

Objectives: Forecasting survival in cancer is a particularly challenging facet of oncological work and can involve complex interactions with patients and their families. While there is considerable research on patient experiences of being provided with, or becoming aware of, their prognosis, there has been much less emphasis placed on the experiences of caregivers. The aim of this paper was to examine caregivers' experiences of prognosis.; Design: This study used semistructured interviews; transcripts were analysed thematically using the framework approach. These data are part of a larger research project focused on experiences of cancer survivorship.; Setting: Recruitment was from two metropolitan hospitals in Queensland, Australia.; Participants: 50 caregivers of patients living with cancer and receiving treatment at two metropolitan hospitals (32% male, 68% female) participated in this study.; Results: Four main themes were identified: (1) caregivers' uncertainty around the meaning and implications of prognosis, (2) caregivers' sense of exclusion in prognostic conversations, (3) the practice of situating prognosis within a context of hope and (4) the precarious balance between realism, optimism and strategic 'ignorance'.; Conclusions: Caregivers are in many respects the unseen third party of prognostic communication. Developing a better understanding of caregivers' perceptions of prognosis, including how this may be challenged, accepted or otherwise, is important in engaging caregivers in the process of communicating prognostic information. Facilitating greater participation by caregivers in prognostic conversations could potentially address evident complexities and even improve the experiences of all stakeholders in cancer care settings.

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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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Community Social Capital and Positive Caregiving Experiences Among Adult-Children Caregivers of Older Adults With Disabilities in Urban China

The present study aimed to examine the association between community social capital and positive caregiving experiences among adult-children caregivers of disabled older adults in urban China. Data for this study were derived from the 2016 wave of the Longitudinal Study on Family Caregivers for Frail Older Adults Aged 75 or Above in Shanghai. The final analysis featured 440 disabled older adult and adult-children caregiver dyads. Multiple indicators and multiple causes modeling was used to test the proposed model from a structural equation modeling perspective. Provision of support to others was significantly associated with self-affirmation. Citizenship activity was significantly associated with life enrichment. Support of units (i.e., employers) was significantly associated with self-affirmation and life enrichment. The findings support the integration of the stress process model and social capital theory and highlight the important role of community social capital in enhancing the subdimensions of positive caregiving experiences. Policy and intervention implications are discussed.

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Using sensor-based technology for safety and independence - the experiences of people with dementia and their families

Background: The majority of people with dementia prefer to live independently and safely in their own home cared for by their family members. Much effort has been invested in the development of technology, such as sensor-based networks. Many challenges remain, in particular gaining more knowledge about their experiences and perceived benefits. This study aimed to explore experiences, needs and benefits with using sensor-based technology for safety and independence in the homes of people with dementia and their family members.; Methods: This study is part of the TECH@HOME project, aiming to evaluate the effects of sensor-based technology on independence among people with dementia and caregiver stress among their family members. This study applied an inductive, qualitative approach with semi-structured interviews of people with dementia (n = 9) and family members (n = 21). The participants were interviewed between June and September 2018 after using the technology for at least 6 months. The interviews were analysed with manifest content analysis.; Results: Our findings highlighted that technology was considered as a precaution and a safety measure that could provide a sense of having control of the everyday life of the person with dementia. Understanding and acceptance of the technology were as important, together with the reliability of the technology. Ethical dilemmas related to the monitoring of the person with dementia in the home were also raised.; Conclusion: This study provides insights into how people with dementia and family members experience and benefit from using sensor-based technology in their own homes. The knowledge generated is essential for healthcare professionals and policymakers developing and implementing care and service systems including technology, as well as for the industry.

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Translation and Validation of the 10-Item FAMCARE Scale to Assess Satisfaction of Family Caregivers With Care Given to Cancer Patients

Context: Family satisfaction with care is an important quality indicator in palliative care.; Objectives: This study aimed to translate and validate the 10-item Family Satisfaction with End-of-Life Care (FAMCARE) tool.; Methods: Family caregivers of patients with advanced cancer were recruited. FAMCARE was translated from English to Chinese using a forward and backward translation process. Chinese-speaking caregivers were interviewed with the preliminary Chinese FAMCARE, and phrasing was edited to ensure clarity of the items. Subsequently, a baseline and follow-up survey in English and the finalized Chinese version were performed to assess psychometric properties. Cronbach's alpha (α) and intraclass correlation coefficient were used for internal consistency and test-retest reliability, respectively. Validity was assessed with Spearman's correlation coefficient (r). The Comprehensive Needs Assessment Tool-Caregiver (CNAT-C) and a one-item assessment by caregivers regarding "good-care" acted as a validity criterion. Pooled analysis of both languages and language-specific analyses were performed.; Results: There were 259 participants; 134 and 125 participants filled in the English and Chinese versions, respectively. Pooled analysis showed that the intraclass correlation coefficient of FAMCARE was 0.95; α was 0.91. There was a moderate positive correlation between the total FAMCARE scores and "good-care" (r = 0.54) and a moderate negative correlation between the total FAMCARE score and the CNAT-C "Healthcare Staff" domain (r = 0.41). There was a weak negative correlation between the total FAMCARE score and the CNAT-C domain of "family and social support" (r = -0.13). Language-specific analyses revealed similar results regarding FAMCARE's psychometric properties.; Conclusion: FAMCARE showed good reliability and validity.

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Telephone-based behavioral activation intervention for dementia family caregivers: Outcomes and mediation effect of a randomized controlled trial

Objectives: The study examined the effects of a telephone-administered psycho-education with behavioral activation intervention (TBA) for family caregivers of person's with Alzheimer's dementia to reduce levels of depressive symptoms and burden and to enhance relationship satisfaction with the care-recipient METHODS: A double-blinded randomized trial compared TBA with telephone-based psycho-education with general monitoring (TGM). Ninety-six dementia caregivers were randomized. Both conditions received four weekly psycho-education sessions led by a social worker. TBA participants then received eight bi-weekly behavioral activation practice sessions delivered by paraprofessionals. TGM participants received eight bi-weekly monitoring sessions by paraprofessionals.; Results: As compared to TGM, TBA participants reported significantly larger reductions in depressive symptoms and burden and larger improvement in relationship satisfaction. Self-efficacy for controlling upsetting thoughts was found to have a partial meditation effect between TBA and the reduction of depressive symptoms. Qualitative feedback suggested that TBA participants expressed unique gains in awareness and developing new ways of reappraising the caregiving situation.; Conclusion: TBA was an effective intervention to reduce depressive symptoms and burden as well as to enhance relationship satisfaction in dementia caregivers.; Practice Implications: The use of telephone and trained paraprofessionals can enhance the accessibility and sustainability of behavioral activation intervention for dementia family caregivers.

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Quality of Care for Huntington's Disease in the United States: Findings from a National Survey of Patients and Caregivers

Background: Little is known about the quality of care for people living with Huntington's disease (HD) in the United States. Objective: To document the current HD care experience and identify gaps in care provision in the United States. Methods: Web-based surveys for persons self-identifying as being affected by HD (PAHD, which included individuals with, or at risk for HD) or as caregivers/family members, were developed and refined with targeted input from focus groups comprised of caregivers and family members. The surveys were disseminated via social media and patient advocacy partners from April-May 2017. Results: Total valid responses numbered 797, including 585 caregiver/family respondents and 212 PAHD responses. Respondents reported care provision from HD specialty centers, primary care, movement disorder clinics, and other settings. One in five respondents reported that the person with HD was not currently receiving medical or community care. Respondents generally reported a good level of care, with HD specialists providing the highest rated healthcare experience. Caregiver/family respondents reported helping with a range of activities including budget/finances (60.5%), housekeeping (57.1%) and daily help (53.2%). Most respondents (97.9%) reported searching online, including general information about HD (86.4%), using HD social media channels (61.3%) and looking up clinical trials (59.8%). Respondents emphasized a need for support in financial planning and accessing care, and also for more HD education in the medical community. Conclusions: There is need for more support for HD patients and families. People desire more credible, accessible information. Improving resources available to patients and families should be a goal for HD organizations, along with measurement of patient outcomes. 

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Purpose in Life Among Family Care Partners Managing Dementia: Links to Caregiving Gains

Background and Objectives Purpose in life is associated with better health and has been found to minimize caregiving stress. Greater purpose may also promote caregiving gains (i.e. rewards or uplifts from providing care), yet the implications of purpose for positive aspects of the care role are largely unknown. The present study determined how perceptions of purpose in life among persons with dementia (PWDs) and their family caregivers are linked to caregiving gains. Research Design and Methods This cross-sectional study examined 153 co-resident family caregivers drawn from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Linear regressions were estimated to evaluate associations between caregivers' and PWDs' reports of their own purpose in life and caregivers' perceived caregiving gains, along with whether these associations vary by caregiver gender. Models controlled for caregivers' sociodemographic characteristics, relationship to the PWD, care tasks, role overload, negative caregiving relationship quality, and both care partners' chronic health conditions. Results Caregivers' higher purpose in life was significantly linked to greater caregiving gains. Beyond this association, PWDs' higher purpose in life was significantly associated with greater caregiving gains for women but not for men. Discussion and Implications Purpose in life is a psychological resource that contributes to positive caregiving outcomes. Interventions to improve caregiver well-being could benefit from strategies that strengthen and maintain feelings of purpose among caregivers and PWDs. 

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Psychometric Properties of a Spanish-Language Version of a Short-Form FAMCARE: Applications to Caregivers of Patients With Alzheimer's Disease and Related Dementias

Although family satisfaction is recognized as a critical indicator of quality care for persons with serious illness, Spanish-language measures are limited. The study aims were to develop a Spanish translation of the short-form Family Satisfaction With End-of-Life Care (FAMCARE), investigate its psychometric properties in Hispanic caregivers to patients with Alzheimer's disease and related dementias (ADRD; N = 317; 209 interviewed in Spanish), and add parameters to an existing item bank. Based on factor analyses, the measure was found to be essentially unidimensional. Reliabilities from a graded item response theory model were high; the average estimate was 0.93 for the total and Spanish-language subsample. Discrimination parameters were high, and the model fit adequate. This is the first study to examine the performance of the short-form FAMCARE measure among Hispanics and caregivers to patients with ADRD. The short-form measure can be recommended for Hispanics and caregivers to patients with ADRD. 

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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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Planning for the future: Exploring the experiences of older carers of adult children with a learning disability

Accessible summary: There are a large number of adults with learning disabilities who live with and are cared for by their parents.There is a need for interventions to support older carers with their caring role and to plan for a time when they can no longer continue caring.This research looked at a local support service in England that aimed to support carers over 55 who had an adult child with a learning disability living at home.Twelve carers were interviewed individually.The study highlights the unmet needs of older family carers and shows the value of support from a carer perspective.

Background: There are a significant number of adults with a learning disability who live with and are cared for by their parents. There is a pressing need for interventions to support older parent carers with their role and to plan for a time when they can no longer continue caring. This article reports on the experiences of older parent carers who have been in receipt of an intervention to support future planning, in a rural part of England, delivered to older carers of their adult children with learning disabilities. Methods: Semi‐structured carer interviews (n = 12) were conducted and analysed thematically. Results: Four themes were identified (a) emotional needs of carer, (b) future planning, (c) accessing other services and resources and (d) links to adult care services. Carers welcomed the flexibility of the intervention and its focus on support for them, relieving their sense of isolation. Conclusions: The research highlights the unmet needs of older family carers and shows the value of tailored support from a carer perspective. The findings have implications for national social care provision delivered to carers of adult children with learning disabilities in rural areas.

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Patients' perspectives of multidisciplinary home-based e-Health service delivery for motor neurone disease

Purpose: To explore the views of people with motor neurone disease (MND) on the barriers, facilitators and potential benefits of using home-based e-Health service delivery (telehealth) to access MND multidisciplinary clinic care. Methods: Twelve patients from three MND multidisciplinary clinics and an MND support association group completed a survey of information technology (IT) use and participated in interviews, to gather participants' experiences and perceptions of home-based telehealth for MND clinic care. Survey data were analyzed descriptively, with interview data analyzed using a stepwise inductive approach. Results: Surveys revealed that participants used IT to communicate with family and friends, but were less likely to use the phone, email or videoconferencing with health professionals. Two themes of participants' use of IT in MND care reflected their experiences of MND care; and personal preferences for modes of healthcare delivery. Participants were willing to use telehealth for MND care, with family members acting as patients' main support for telehealth participation. Nevertheless, participants preferred face-to-face contact with the MND clinic team in the initial and early stages of the disease. Conclusions: People living with MND may wish to participate in individual care planning to facilitate their access to a variety of e-Health service modalities. Additionally, individual care planning may allow healthcare professionals to deliver e-Health-based care, such as telehealth, to increase the scope of care provided. Research to ascertain the views of health professionals and family members as co-participants in service delivery via telehealth is needed to fully assess the potential contribution of e-Health. People living with MND face a range of barriers to attending specialized multidisciplinary care, including fatigue, caregiver availability and logistical challenges to travel. Patients have indicated willingness to use e-Health applications to improve their access to care. Use of telehealth could expand service delivery to people with MND living long distances from multidisciplinary clinics, and increase the patient-centred focus of care by tailoring care planning. By offering telehealth services routinely, MND multidisciplinary clinics could also improve the quality and timelines of services offered.

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Patient and caregiver experience with delayed discharge from a hospital setting: A scoping review

Background: Delayed hospital discharge occurs when patients are medically cleared but remain hospitalized because a suitable care setting is not available. Delayed discharge typically results in reduced levels of treatment, placing patients at risk of functional decline, falls and hospital‐related adverse events. Caregivers often take on an active role in hospital to mitigate these risks. Objective: This scoping review aimed to summarize the literature on patient and caregiver experiences with delayed hospital discharge. Search strategy: Seven electronic databases and grey literature were searched using keywords including alternate level of care, delayed discharge, patients, caregivers and experiences. Inclusion criteria: Included articles met the following criteria: (a) patient or caregiver population 18 years or older; (b) delayed discharge from a hospital setting; (c) included experiences with delayed discharge; (d) peer‐reviewed or grey literature; and (e) published between 1 January 1998 and 16 July 2018. Data extraction: Data were extracted from the seven included articles using Microsoft Excel 2016 to facilitate a thorough analysis and comparison. Main results: Study themes were grouped into five elements of the delayed discharge experience: (1) overall uncertainty; (2) impact of hospital staff and physical environment; (3) mental and physical deterioration; (4) lack of engagement in decision making and need for advocacy; and (5) initial disbelief sometimes followed by reluctant acceptance. Conclusion: This review provides a foundation to guide future research, policies and practices to improve patient and caregiver experiences with delayed hospital discharge, including enhanced communication with patients and families and programmes to reduce deconditioning.

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A Linguistic Model of Communication Types in Palliative Medicine: Effects of Multidrug-Resistant Organisms Colonization or Infection and Isolation Measures in End of Life on Family Caregivers' Knowledge, Attitude, and Practices

Background: This study examines communication profiles and associated attitudes toward health care professionals in interviews with family caregivers of hospitalized patients with confirmed multidrug-resistant organisms (e.g., methicillin-resistant Staphylococcus aureus or multiresistant gram-negative bacteria) diagnosis at the end of life. Objectives: This study aims to replicate and complement findings from a previous investigation using a different methodological framework. The benefits of linguistic research in medical contexts are highlighted. Design: Fifty interviews with family caregivers were analyzed linguistically. The considered parameters include lexical choices such as evaluative wording, metaphors, and specialized terminology, as well as higher level categories—turn-taking, sentence-length, and personal deixis. These characteristics serve to assess attitudes toward medical staff, hygiene measures, knowledge, and its transfer and general emotional states. Conclusions: Linguistic expertise adds benefits to the classical analysis of language data as used in social sciences. Family caregivers' linguistic and attitudinal profiles vary depending on whether their involvement in the overall situation is active or passive, and whether their relationship toward staff and hospital is cooperative or confrontative. Depending on the four possible combinations of those characteristics, different recommendations for communication strategies on the staff's side can be given. In all cases, clear and patient/family centeredness are considered beneficial.

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Health, well-being, and social support in older Australian lesbian and gay care-givers

Informal care-givers play an important role in society, and many of the people who provide this care are lesbian women and gay men. Being a care-giver is known to be associated with poorer health and well-being, and lesbian and gay care-givers report experiences of stigma and discrimination in the care-giving context. This study involved a survey of 230 lesbian women and 503 gay men aged 60 years and over living in Australia, of which 218 were care-givers. We compared care-givers to non-caregivers on a range of health and well-being measures, including psychological distress, positive mental health, physical health and social support. While we found no significant differences between these two groups, we further compared care-givers who were caring for an LGBTI person to those who were caring for a non-LGBTI person. Among the lesbian women, care-givers of an LGBTI person reported feeling less supported in their carer role and reported lower levels of social support more generally. They were also lower on positive mental health and physical health indicators. Among the gay men, care-givers of an LGBTI person also reported feeling less supported in their carer role, but there were no differences in reported levels of social support more generally or health and well-being compared to those caring for a non-LGBTI person. Overall, results from this study suggest that older lesbian and gay care-givers may be facing some challenges related to their well-being and feeling supported, especially if they are caring for another LGBTI person.

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Greek Adaptation of the Positive Aspects of Caregiving (PAC) Scale in Dementia Caregivers

Objectives: The aim of the present study is to validate the Positive Aspects of Caregiving (PAC) scale in Greek informal family caregivers of patients with dementia, in order to assess its psychometric properties. Methods: Two hundred and forty-seven dementia caregivers completed the Greek version of the PAC (G-PAC) scale in correlation with the following psychometric tools, the Beck Depression Scale, the Zarit Burden Interview (ZBI), the Beck Anxiety Inventory (BAI), the Quality of Life-AD (QoL-AD), the Perceived Stress Scale (PSS), and the Neuropsychiatric Inventory (NPI). Caregivers were included in the study after they had been initially informed of its purpose and completed the informed consent. Results: The Principal Component Analysis (PCA) extracted two factors for the G-PAC, which is also in agreement with the original version, which is Enriching Life and Affirming Self. Concurrent validity suggested significant correlations between G-PAC and behavioral and psychological symptoms of dementia and with perceived stress. In regard to the reliability measures, the results showed that the G-PAC scale has very good internal reliability and high levels of test-retest reliability. Conclusions: The scale is a both valid and reliable tool, and therefore it can be used to assess the positive aspects of caregiving in dementia caregivers. Clinical implications: The development of positive psychology measures in dementia care can be regarded as the cornerstone of the psychotherapeutic interventions addressed to caregivers, and therefore helping them to adapt better in their caregiving role.

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Factors Associated With Primary Family Caregivers' Perceptions on Quality of Family‐Centered Care in Mental Health Practice

Purpose: This study aimed to examine the quality of family‐centered care perceived by primary family caregivers and its influencing factors in mental healthcare practice. Design: A cross‐sectional, correlational study. Methods: A convenience sample of 121 mental health nurses and 164 primary family caregivers of patients with schizophrenia was recruited from acute psychiatric wards and chronic psychiatric rehabilitation wards in three psychiatric hospitals in Taiwan. Structured questionnaires for mental health nurses were designed to examine nurses' attitudes toward schizophrenia and the importance of families in nursing care. Primary family caregivers were assessed to determine their perceptions of quality of family‐centered care. At least one primary family caregiver of patients was matched to a nurse who took major responsibility for the patient during the hospitalization. Data were analyzed with descriptive statistics, Pearson's product‐moment correlations, independent t‐test, one‐way analysis of variance, and stepwise regression analyses. Results: Quality of family‐centered care perceived by primary family caregivers regarding the provision of general and specific information, as compared to enabling and partnership, coordinated and comprehensive care, and respectful and supportive care, was relatively inadequate. Younger and more educated primary family caregivers, having relatives with schizophrenia in acute wards, less supportive nurses' attitudes toward schizophrenia, and the importance of family in nursing care were correlated with poor primary family caregivers' perceptions of quality of family‐centered care. Nurses' supportive attitudes toward schizophrenia and chronic psychiatric rehabilitation wards where patients received care were key factors in determining better quality of family‐centered care. Conclusions: Findings provide a platform for the development of effective continuing education and training programs to equip mental health nurses with supportive attitudes toward mental illness and an integration of the family in nursing care, which will ultimately improve mental health care for families experiencing mental health problems. Clinical Relevance: Efforts in professional training to address stigma and encourage a family‐centered approach into recovery‐oriented practice for practicing mental healthcare providers, including mental health nurses, are recommended.

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Exploring positive aspects of caregiving in family caregivers of adult ICU survivors from ICU to four months post-ICU discharge

Background: Despite growing attention to the positive meaning from ICU survivorship, little is known about positive experience among family caregivers of ICU survivors.; Objectives: To explore positive aspects of caregiving in family caregivers from patients' ICU admission to 4-month post-ICU discharge.; Methods: A secondary analysis of data from 47 family caregivers of ICU patients who self-reported the measure, Positive Aspects of Caregiving (PAC, 11-item, score range 11-55).; Results: Family caregivers rated their experience as positive overall across the time points (mean 42.42-44.95). Trends of higher mean PAC scores were observed in caregivers who were older than 50 years of age, parent or sibling of patients, not working, had religious background or preference, and had no financial difficulty. Better social support and psychological responses were associated with PAC.; Conclusion: In our sample, family caregivers of ICU survivors rated their caregiving experience as positive during the ICU and post-ICU periods.

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Examining satisfaction of older adult patients and their caregivers following traumatic injury: a cross-sectional study of three level I trauma centres

Objective: To explore satisfaction of care received by older adult patients and their primary caregivers following traumatic injury.; Design: Prospective, cross-sectional study using the FAMCARE (Family Satisfaction with Advanced Cancer Care Scale) satisfaction surveys prior to discharge.; Setting: Three level I trauma centres in Colorado from November 2016 to December 2017.; Participants: Trauma patients ≥55 years old and their primary caregivers.; Outcome Measures: Overall mean (SD) satisfaction, satisfaction <80% vs ≥80%, and mean satisfaction by survey conceptual structures.; Results: Of the 319 patients and 336 caregivers included, the overall mean (SD) patient satisfaction was 81.7% (15.0%) and for caregivers was 83.6% (13.4%). The area with the highest mean for patient and caregiver satisfaction was psychosocial care (85.4% and 86.9%, respectively). Information giving was the lowest for patients (80.4%) and caregivers (80.9%). When individual items were examined, patients were significantly more satisfied with 'availability of nurses to answer questions' (84.5 (15.3) vs 87.4 (14.8), p=0.02) and significantly less satisfied with 'speed with which symptoms were treated' (80.6 (17.9) vs 84.0 (17.0), p=0.03) compared with caregivers. Patients with a history of smoking (least squares mean difference: -0.096 (-0.18 to -0.07), p<0.001) and hospital discharge destination to an outside facility of care (adjusted OR: 1.6 (1.0 to 2.4), p=0.048) were identified as independent predictors of lower overall satisfaction in generalised linear and logistic models, respectively.; Conclusions: Our data suggest that patients' medical history was driving both patient and caregiver satisfaction. Patient characteristics and expectations need to be considered when tailoring healthcare interventions.

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Early caregiving experiences and the impact on transition into adulthood and further life: a literature review

Internationally, there is a growing body of knowledge about young carers, but there is a lack of research about their experiences in later life and about how their caregiving responsibility influences their transition into adulthood and affects them in their future life. The aim of this literature review is to present the experiences of young adult carers in the phase of life in which many decisions are made for one's own life as an adult. In addition, the retrospective perspective of former caregivers will be described, too. Thirteen studies, published in English or German, were included after critical appraisal. Of these, six focused on the phase of transition and seven gave their attention to the retrospective. The analysis was performed explorative in line with the Grounded Theory Method. The findings of the literature review provide insights into the family situations at the time of caregiving and into the tasks of former young carers. They also impart the positive and negative effects. Former young carers assumed responsibilities they did not want to take over. They often took on the parental role. In retrospective, especially older female siblings felt that they had to change roles, often taking over the mother's role. In this role, they sometimes felt overwhelmed and left alone. Adult former carers feel mentally less healthy and insufficiently strengthened due to the long-term care or support they have given. But there are also positive effects pointed out by former young carers. Many of them are distinguished by outstanding social skills in adulthood. They feel well prepared for life through the care experiences and appreciate the practical skills they have learned. The results of this literature review show that the caring experiences influence the life of former young carers and determine their further life course.

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Dying in acute hospitals: voices of bereaved relatives

Background: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals. Methods: Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate). Results: The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support. Conclusions: This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative's priorities for EoLC in acute hospitals and can advance care providers', policy makers' and educationalists' priorities for service improvement.

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Determinants of Burden and Satisfaction in Informal Caregivers: Two Sides of the Same Coin? The CUIDAR-SE Study

The aim of this study conducted in Spain was to analyze and compare burden, severe burden, and satisfaction among informal caregivers in relation to health-related quality of life (HRQoL), type and duration of caregiving, perceived social support, and use of social and health care services. We performed multivariate analyses to identify variables associated with caregiver burden, severe burden, and satisfaction with caregiving, stratified by gender. The results showed that secondary or third-level education, performance of ungratifying tasks, negative coping with caregiving, and more years providing care were associated with greater burden. Variables with protective effect were better perceived health of the person being cared for, better caregiver HRQoL, and high perceived social support. Women were 75% more likely to experience severe burden compared with male caregivers. Burden was reduced by high perceived social support in the case of women and by high caregiver HRQoL in the case of men. The main determinant of caregiving satisfaction for both men and women was perceived social support (OR = 3.11 and OR = 6.64). This study shows the need for interventions that promote gender equality and social support as a means of relieving burden and severe burden and improving satisfaction in both male and female caregivers.

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Communal Orientation, Benefit-finding, and Coping among Young Carers

A substantial body of research documents the impact of informal care on adult caregivers' wellbeing, but little is known of the experiences of young carers who attend postsecondary schools in Canada. Despite the estimated 1.25 million young people ages 15–24 assuming caregiving roles in Canada, young carers are a hidden and largely unsupported demographic in Canada. To gain a better understanding of young caregiving in Canada, the current study explores the role of communal orientation, benefit-finding, life satisfaction, and family satisfaction among young student carers. Further, we examine the mediating role of diverse coping strategies to better understand how communal orientation may be associated with wellbeing. One hundred and thirty-seven participants were recruited from two Canadian universities, and data were collected through online surveys. Results showed that while communal orientation and the use of coping strategies were positively associated with benefit finding, communal orientation was negatively associated with life satisfaction and family satisfaction. Use of instrumental support mediated the association of communal orientation with benefit finding. The findings suggest a communal orientation may help young carers find benefit in the caregiving role by enhancing the use of instrumental support coping strategies. 

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Chinese American Family Caregivers' Perception of Program Use and Caregiver Stress

Caregiver programs provide specialized services and resources to reduce caregiver stress and improve family quality of life and health. Although there are resources and community services available, Chinese American family caregivers' perceptions on caregiver programs and how specific services help to viably reduce their stress has yet to be examined. An in-depth interview was conducted with four Chinese American family caregivers in exploring their caregiving experiences and program service use; two of the caregivers were spouses and two were adult children. Content analysis revealed that their value of familial piety, and their need to ameliorate caregiver stress fueled their interest in new interventions to improve their quality of life and health. Spousal caregivers and adult children caregivers disclosed different needs due to caregiving, and adult children caregivers were less resistant to new interventions. The results of this study fill the knowledge gap on Chinese American family caregivers' perception of caregiving in a cultural context as well as their needs. Suggestions for future research are to better understand the effectiveness of the specific services within caregiver programs that are effective in reducing caregiver stress among Chinese American family caregivers. 

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Caregiving for older adults requiring hemodialysis: A comparison study

This study examined differences in caregiving appraisal between primary family caregivers of disabled older adults receiving hemodialysis (PFCGs-wHD) and disabled older adults not receiving dialysis (PFCGs-woD). A total of 242 PFCGs -wHD and 335 PFCGs-woD were included in the analyses. We used adjustment by propensity score to control for bias by confounding factors. Caregiving appraisal was measured in terms of role strain, emotional exhaustion, and caregiving satisfaction. On the first task, PFCGs-wHD demonstrated significantly worse levels on all three appraisal indicators than did PFCGs-woD. On the second task, only higher emotional exhaustion was significantly mediated by higher role strain in PFCGs-wHD. Further, PFCGs-wHD status directly influenced lower caregiving satisfaction without mediation by higher role strain. Caregiving for disabled older adults receiving HD may be associated with significant challenges for caregivers. 

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Predictors of the personal benefits and positive aspects of informal caregiving

Objective: We investigated a) the number of reported benefits in an informal caregiving situation and b) the factors that predict the caregiver's (CG's) experience of benefits. Method: In this cross-sectional study, we computed univariate analyses and a multiple regression analysis using a benefit score as the dependent variable. Participants were 734 informal CGs who provide care for a person with chronic care needs in Germany. We examined the CG's self-reported physical complaints (GBB-24), subjective burden (CSI), depressive symptoms (PHQ-9), quality of life (CarerQoL), and benefits (BIZA-D). Results: Most of the CGs (87.1%) experienced benefits in at least one field. A higher experience of benefits was significantly associated with: more depressive symptoms (r = 0.10), higher burden (r = 0.17), longer duration of care (r = 0.07), longer daily care time (r = 0.21), more physical complaints (r = 0.15), and a good quality of the relationship between CG and CR (η = 0.13). In the multivariate regression analysis, a good relationship between the CG and CR (β =.157, P <.001), an increased amount of care time (β =.188, P <.001), and a higher level of burden (β =.167, P <.001) were associated with greater CG's benefits. Conclusion: CG benefits are a very important, often experienced, but less-explored construct in caregiving research. Benefits do not seem to be on the opposite end of the same continuum as negative aspects of caregiving. Benefits appear to be a nearly distinct dimension in informal care settings.

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266 Patient and Carers Experience of an Acute Care at Home Team: A Service Evaluation

Background The Aim of the Acute Care at Home Team is to provide acute care to over 65's in the patient's own home, providing assessment and treatment of acute conditions such as pneumonia, urinary sepsis and heart failure. It is a multidisciplinary team that works together to streamline services to enable a patient to stay safely in their own home. A full comprehensive geriatric assessment is carried out in all patients to help improve patient outcomes. The patients have full access to in patient services such as scans, and x-rays. All blood tests are treated as urgent to ensure the patient is in no way disadvantaged by being treated by acute care at home compared with hospital care. The aims and objectives are to explore patient and family experiences and identify any areas for improvement. Methods A service users and carers experience Questionnaire (N=31) was used to gain insight into how satisfied the patient or family were with the service and what the experience was like having the team come into their home. Results Patient satisfaction with this Acute Care at Home Team was reported at 100%. Patients were happy with the care they received, 100% of patients were happy with staff's knowledge of their condition and treatment plan. All of the respondents stated they would both recommend the service and use it again. The qualitative responses were in keeping with 100% satisfaction in that they were positive in nature. Conclusion This service evaluation has shown that patient and carer experience of this Acute Care at Home Team is a positive one, with 100% satisfaction levels. There are some small areas to be improved upon, however the results show this service is providing the over 65 population with a good experience of being treated at home as an alternative to hospital care when acutely unwell. 

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146 The Lived Experience of Carer Resilience Told by Carer Advocates

Background Established in 2013 this network of volunteer family carers is a national advocacy group that presents a vital opportunity for carers to use their voice to raise awareness of issues affecting families living with dementia in Ireland. The network is facilitated by a dementia specific service provider. These carer advocates wish to present on a piece of qualitative research they have recently conducted on the topic of carer resilience at the advanced stages of caring for a loved one with dementia. Methods There are 43 family carer advocates on the network, all of whom were invited to participate in this research. The piece of qualitative research conducted by the network with its members took the form of a questionnaire. The research sought to ascertain how informed and supported carers felt as their loved ones transitioned to long term residential care and the stage thereafter. This research did not discuss the level of professional care given to their loved one but what supports and services were offered to the carer at that time and how this affected their resilience. The aspect of caring for a loved one availing of hospice care naturally emerged during the research process and this topic was also explored in relation to carer resilience. Completed questionnaires were analysed to show findings and draw conclusions. Results The research gives insight into the lived experience of carer resilience told by carer advocates. The results show that carer advocates feel ill-informed and badly supported as their loved one transitions to or resided in long term residential care. The research also showed that carers feel more informed and supported if their loved one availed of hospice care rather than long term residential care. Conclusion Carers are not properly informed or supported when their loved one transitions to or resides in long term residential care and this negatively affects their resilience.

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119 The Perceptions of Older Patients and their Family or Caregivers Towards Physical Activity and Exercise in Hospital: A Qualitative Study

Background Between 30-60% of older people experience functional decline after hospitalisation which can be accelerated by inactivity in hospital. Family or caregivers can positively affect activity levels of hospitalised older people. We aimed to explore the perceptions of hospitalised older people and their family or caregivers towards physical activity and exercise during an admission to a Specialist Geriatric Ward in an acute hospital Methods A qualitative approach was taken, using semi-structured interviews with eleven patient participants and semi-structured focus groups with four family or caregivers. Thematic analysis was utilised to identify key themes. Results Three similar themes emerged from both groups: 1) personal feelings towards exercise or inactivity, 2) the role family/caregivers could play in facilitating exercise and 3) the role of hospital staff, which all impacted on participants' perceptions towards exercise in hospital. Personal influences including self-efficacy and appreciation of the importance of exercise resulted in more positive views towards activity. There was an acute awareness among some family of the dangers of inactivity. Uncertainty existed regarding the role family or caregivers have in increasing patient activity levels. Some patient participants believed family involvement may increase activity levels, while others thought it would compromise their independence. Both groups identified a need for more patient-specific information regarding activity in hospital. Both groups favoured hospital staff encouraging rather than restricting activity and felt that more doctors encouraging exercise would be helpful. The need for more opportunities for meaningful activity in hospital was highlighted. Conclusion Physical activity and exercise were perceived as important during hospital admission. Hospital staff should facilitate and enable increased opportunities for patient activity, and empower family or caregiver involvement in this where appropriate. 

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59 Male Family Carers' Perceptions of Formal Support Services, a Meta-ethnography

Background Family carers provide thousands of hours of unpaid work every year, a third of whom are men, however this group are generally under-represented in research. Comparative studies have shown that male carers experience their caring role differently to female counterparts. Social concepts related to masculinity can help to explain help-seeking behaviours of male carers, as well as their attitudes to accessing outside support. Compared to women carers, men have lower rates of uptake of formal support services. This aim of this review, therefore, was to examine accounts of male carers' experiences and perceptions of receiving formal support. Methods The study followed a meta-ethnography process starting with a systematic literature search of five electronic databases. The methodological quality of the included studies was evaluated using the McMaster checklist. Using NVivo 12 software, primary qualitative data was analysed and key themes were identified. Results were synthesised using Noblit and Hare's (1988) process of meta-ethnography, retaining direct quotes from the studies. Results Eighteen studies were included in the final paper. Three main themes were identified: 1) asserting control over the caring role 2) desire to excel in caring role and 3) coping without formal support. Conclusion For the most part, male carers expressed a desire to be competent in their caring role. Perceived loss of control within the caring relationship was a key factor when men had low trust and dissatisfaction with services. Support services that were collaborative, education-based and gender-sensitive were favoured by the men. To engage more male carers, service providers should acknowledge men's experience and capabilities as well as their wish to stay involved in decision-making around care for their family member. For men over the age of 85 male family carers outnumber females in Ireland (CSO 2016). It is important to understand male carers' experience to develop more inclusive supports and consequently increase service uptake

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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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Silent voices: Family caregivers' narratives of involvement in palliative care

Aim To explore how family caregivers experience involvement in palliative care. Design A qualitative design with a narrative approach was used. Methods Purposive sampling and narrative interviews were conducted. Eleven bereaved family caregivers for patients with cancer receiving palliative care were interviewed in Mid‐Norway between November 2016–May 2017. Results We identified four themes related to family caregivers' experiences of involvement in the early, middle, terminal and bereavement phases of palliative care: (a) limited involvement in the early phase; (b) emphasis on patient‐centred care in the middle phase; (c) lack of preparation for the dying phase; and (d) lack of systematic follow‐up after death. Family caregivers experienced low level of involvement throughout the palliative pathway. Conclusion The involvement of family caregivers in palliative care may not be proportional to their responsibilities. The needs of family caregivers should be addressed in nursing education to give nurses competence to support family caregivers in providing home‐based care.

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Non-spouse companions accompanying older adults to medical visits: a qualitative analysis

Background Medical Visit Companions (MVCs) are encouraged for older adults' routine medical encounters. Little data exist on the experiences and contributions of non-spouse companions for the growing population of older adults without a living spouse. Methods We conducted six focus groups with forty non-spouse MVCs identified through churches in Baltimore, Maryland. Thematic analysis was used to identify key issues before the visit, during the visit itself, after the visit, and in the overall companion experience. Results MVCs described their experiences positively but also highlighted many challenges related to the role that extended far beyond the visit itself. These included scheduling, transportation, communication, and coordination of care expectations. Conclusion Our increasingly complex healthcare system can be challenging for older adults to navigate successfully. The diverse nature of tasks performed by companions in this study highlight the many benefits of having a companion accompany older patients to medical visits. The positive experience of the companions studied and their willingness to continue their role in the future highlights the untapped potential for increased social facilitation to improve the quality of healthcare visits and achieve patient-centered care for all older patients.

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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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Enhancing the cancer caregiving experience: Building resilience through role adjustment and mutuality

Purpose: The purpose of this study was to explore the dyadic experience of caring for a family member with cancer. Particular attention was given to examine the relationship between dyadic perceptions of role adjustment and mutuality as facilitators in resilience for posttreatment cancer patients and family caregivers. Method: For this convergent parallel, mixed-methods study using grounded theory methodologies, 12 dyads were recruited from the National Institutes of Health Clinical Center in Bethesda, Maryland, USA. Qualitative data collection focused on social interactions between cancer patients and their family caregivers to better understand and describe how post-treatment patients and caregivers create mutuality in their relationships, how they describe the processes of role-adjustment, and how these processes facilitate dyadic resiliency. Quantitative data collected through electronic survey included the Family Caregiving Inventory (FCI) for Mutuality Scale, Neuro QoL Ability to Participate in Social Roles and Activities, and Satisfaction with Social Roles and Activities-Short Forms, and Mental Health Continuum-Short Form (MHC). Results: Eleven participants were spouses. Twenty-two self-reported as Caucasian. The sample ranged from 35 to 71 years of age (Caregiver M = 53.7, Patient M = 54.3). Most of the caregivers were female (n = 8; 66.7%) and most of the patients were male (n = 9; 75%). Qualitative interview data illuminated two primary psychosocial processes relating to resilience, role adjustment and mutuality, as key facilitators for transformation and growth within dyadic partnerships coping with the challenges of cancer treatment and cancer caregiving. The FCI-mutuality score for patients (M = 3.65 ± 0.47) and caregivers (M = 3.45 ± 0.42) reflected an average level of relationship quality. Relative to participation in, and satisfaction with social roles and activities, patients (M = 50.66 ± 7.70, M = 48.81 ± 6.64, respectively) and caregivers (M = 50.69 ± 8.6, M = 51.9 ± 8.75, respectively) reported scores that were similar to the US General Population (M = 50 ± 10). Conclusions: New patterns of role adjustment and mutuality can assist with making meaning and finding benefit, and these patterns contribute to dyadic resilience when moving through a cancer experience. There are few interventions that target the function of the dyad, yet the emergent model identified in this paper provides a direction for future dyadic research. By developing interventions at a dyadic level, providers have the potential to encourage dyadic resilience and sustain partnerships from cancer treatment into survivorship. 

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What do relatives value most in end-of-lie care for people with dementia?

Background: End-of-life care for older people with dementia is often sub-optimal. Understanding the experiences of the relatives involved in the care of the person with dementia may help to improve care practice. Aims: To investigate relatives' experiences with end-of-life care for people with dementia, comparing the nursing home and home setting. Methods: In-depth interviews were conducted with 32 individuals who were bereaved of someone with dementia. Thematic analysis was performed to identify main themes from the data. Findings: Experiences translated into four themes: acknowledging human dignity; being recognised as an important caregiver; (not) talking about death and dying and making decisions together. A lack of person-centered care was mainly evident in nursing homes. Relatives took on a more prominent role in the care of the older person with dementia when the relative was cared for in a home setting and this involvement in the care of the older person was something that the relatives valued. Surrogate decision-making induced similar challenges in both settings. Conclusion: It is important that healthcare professionals inform and support relatives to help them make decision about end-of-life care and preferences. Nursing homes should learn to offer the same standard of person-centred care as a home care setting, and ensure that relatives are still involved in the care of the person with dementia.

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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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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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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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Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: A qualitative study of caregivers' and professionals' experiences in Swedish hospitals

Objectives Informal caregivers of patients with chronic obstructive pulmonary disease (COPD) experience a heavy caregiver burden, but few studies have explored what support they need. The aim of this study was to describe perceptions of healthcare support to informal caregivers, both from the family caregiver's and the staff's perspective. Design A qualitative interview study involving semi-structured interviews and analysed with content analysis. Participants In total, 54 participated: 36 informal caregivers of patients with severe (stage 3-4) COPD and 17 healthcare staff. Results Two main themes emerged from the analysis: (1) Ambiguity impedes provision of support. Both caregivers and staff experienced ambiguity. The informal caregivers needed emotional, practical and informational support but talked about unclear expectations, while the staff described an uncertainty about their duties regarding the families. There were no routines to unburden the families. Moreover, language and cultural barriers hampered their efforts. (2) Knowledgeable and perceptive communication is key to support. Both caregivers and staff described positive experiences of dialogue. The dialogue may facilitate means to caregiver support and was a support in itself. Conclusions Our findings suggest that strategies and routines for caregiver support, including communication skills among the staff, should be developed, to move toward the family perspective advocated in palliative- and nursing family care. 

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Informal carers' experience of assistive technology use in dementia care at home: A systematic review

Background: Dementia is a health and care priority globally. Caring for persons with dementia is a challenge and can lead to negative psychological, physiological and financial consequences for informal carers. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology devices such as electronic medication dispensers, robotic devices trackers and motion detectors. However, little is known about carers' experience and the impact of these technologies on them. This review aims to investigate the outcomes and experience of carers of persons with dementia, who live at home and use assistive technology. Methods: A systematic search in seven databases and manual searches were carried out using pre-defined inclusion and exclusion criteria to identify studies on carers of persons with dementia involving the use of assistive technology. The search identified 56 publications with quantitative, qualitative and mixed-method designs. Results: The studies reported positive and negative findings and focused on a wide variety of assistive technology devices. There were large differences in the uses of assistive technology, outcome measures used and the quality of studies. Knowledge and acceptance, competence to use and ethical issues when using assistive technology were themes that emerged from the studies. Carers generally appreciated using assistive technology and their experience of use varied. Conclusions: The intention of this systematic review is to list and classify the various types of assistive technology used by carers of persons with dementia and explores the positive and negative aspects, knowledge, acceptance and ethical issues in the use of assistive technology by carers of persons with dementia. We recommend the use of a standard and person-centred system of classifying and naming assistive technology devices and systems and for future research efforts in assistive technology to incorporate a family/carer centred model. Systematic review registration: PROSPERO - CRD42017082268.

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Usability evaluation of an eHealth intervention for family carers of individuals affected by psychosis: A mixed-method study

Background: Existing research suggests that eHealth interventions targeting family carers of individuals with long-term illness offer a promising approach to care delivery. In particular, digital psychoeducational interventions with interactive psychosocial support are well-received with high rates of satisfaction and acceptability. However, development of such interventions for psychosis carers is lacking. We developed a multi-component eHealth intervention specifically for carers of individuals affected by psychosis, called COPe-support (Carers fOr People with Psychosis e-support). Objective: Using mixed methods to evaluate usability, system heuristics and perceived acceptability, we conducted a usability study to establish the suitability of the intervention prototype for the target user group. Methods: Twenty-three carers were recruited to the study and participated in a think-aloud test or a remote online trial of the intervention. Qualitative feedback, post-use System Usability Scale (SUS) scores, and real-world usage data collected from the tests were analysed. These were also supplemented with heuristic evaluation data provided by an independent eLearning technology expert. Results: Participants evaluated the intervention content as useful and helpful, and indicated that the system had satisfactory usability with a mean SUS score of 73%, above the usability quality benchmark threshold. Study results identified some minor usability issues, which were corroborated with the eLearning expert’s heuristic evaluation findings. We used these results to refine the COPe-support intervention. Conclusions: The usability study with end-users and service providers identified real-life usage and usability issues. The study results helped us refine COPe-support and its delivery strategy before its launch as part of a large-scale clinical trial. 

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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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Day Care for People with Dementia: A Qualitative Study Comparing Experiences from Norway and Scotland

Potential benefits from day care attendance are reported in the literature for both people with dementia and caregivers, although the evidence-base is limited. The study aimed to explore and compare experiences of day care services for people with dementia as described by day care attendees and their caregivers in Norway and Scotland. Whereas day care receives prominence in Norway’s national dementia plan, Scotland does not highlight day care in its national dementia strategy. A qualitative cross-national comparative study was undertaken. Semi-structured interviews were conducted with 17 people with dementia and 17 caregivers in Norway, and 19 people with dementia and 15 caregivers in Scotland. Data were analyzed thematically and comparatively to explore the experiences and outcomes of the participants. Findings indicate positive outcomes from day care for both people with dementia and caregivers. Satisfaction with services related to meaningful activities, getting out of the home, strengthening social connections and careful staff facilitation to create a positive and welcoming atmosphere. There were strong similarities in the content of services and experiences reported in the two countries. Some minor differences were noted, with caregiver support being an area of notable divergence in experiences. Specialist day care for people with dementia seems to provide important support and positive outcomes for people with dementia, and respite and reassurance for their caregivers. More research is needed to further explore the effect of day care designed for people with dementia both on the attendees and their caregivers. 

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Influence of Positive and Negative Dimensions of Dementia Caregiving on Caregiver Well-Being and Satisfaction With Life: Findings From the IDEAL Study

Objective: The aim of this study was to identify the potential impact of positive and negative dimensions of caregiving on caregiver well-being and satisfaction with life (SwL). Methods: This study used time-point one data from the Improving the experience of Dementia and Enhancing Active Life (also known as IDEAL)cohort study that involved 1,283 informal caregivers of people in the mild-to-moderate stages of dementia recruited from 29 sites within Great Britain. Multivariate linear regression modeling was used to investigate the associations between positive dimensions of caregiving (measured by caregiving competence and perceptions of positive aspects of caregiving), negative dimensions of caregiving (measured by caregiving stress and role captivity), and caregiver well-being and SwL. Results: Lower well-being was associated with low caregiving competence (–13.77; 95% confidence interval [CI]:–16.67, –10.87), perceiving fewer positive aspects of caregiving (–7.67; 95% CI:–10.26, –5.07), high caregiving stress (–24.45; 95% CI:–26.94, –21.96), and high role captivity (–15.61; 95% CI:–18.33, –12.89). Lower SwL was associated with low caregiving competence (–4.61; 95% CI:–5.57, –3.66), perceiving fewer positive aspects of caregiving (–3.09; 95% CI:–3.94, –2.25), high caregiving stress (–7.88; 95% CI:–8.71, –7.06), and high role captivity (–6.41; 95% CI:–7.27, –5.54). When these four measures were combined within the same model, only positive aspects of caregiving and caregiving stress retained independent associations with well-being and SwL. Conclusion: Both positive and negative dimensions of caregiving were associated with caregiver well-being and SwL. Psychological therapies and interventions need to consider not only the negative aspects of caregiving but also positive caregiving experiences and their implications for caregiver well-being and SwL. 

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The Experiences of Family Caregivers at the End of Life: Suffering, Compassion Satisfaction and Support of Health Care Professionals: Experiences of Caregivers at the End of Life

A death with dignity is influenced by the quality of care offered to patients. The objective of this study was to identify, through the firsthand experiences and insights of family caregivers, the key elements related to the care offered to patients with a terminal illness at the end of life. This multicenter qualitative study was based on the paradigm of hermeneutic phenomenology. Participants were relatives of patients with terminal illness who had been identified as primary caregivers. Five discussion groups and 41 in-depth interviews were organized with a total of 81 participants. The content of the interviews was analyzed based on the methods developed by Giorgi (J Phenom Psychol 1997;28(2):235-260). The results indicate the existence of 3 dimensions: the caregiver's suffering, compassion satisfaction with the care provided, and the support of health care professionals. Understanding the experiences of family members providing end-of-life care allows improved care and provides dignity in death. Health and social systems must provide comprehensive assistance covering the different aspects of needed care. Health professionals occupy a privileged position in the care of these patients and their families.

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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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Insights into the system of care of the elderly with mental disorders from the perspective of informal caregivers in Lithuania

Background: Changes in the demographics and respective growth of life expectancy and social needs make informal caregiving crucial component of comprehensive health and social care network, which substantially contributes to the health and well-being of the elderly. The purpose of this paper is to understand the system of care of elderly patients with mental disorders from the perspective of informal caregivers in Lithuania. Methods: We conducted five semi-structured focus group discussions with 31 informal caregivers attending to elderly patients with mental disorders. The data were audiotaped and transcribed verbatim. A thematic analysis was subsequently performed. Results: Five thematic categories were established: (1) the current state of care-receivers: Representation of the complexity of patients' physical and mental condition. (2) The current state of caregivers: Lack of formal caregivers' integration as a team; inadequate formal involvement of informal caregivers. (3) Basic care needs: The reflection of the group needs relating directly to the patient, care organisation and the caretaker. (4) The (non-) Readiness of the existing system to respond to the needs for care: Long-term care reliance on institutional services, lack of distinction between acute/immediate care and nursing, lack of integration between the medical sector and the social care sector. (5) Potential trends for further improvement of long-term care for the elderly with mental disorders. Conclusions: Strengthening of the care network for elderly patients with mental disorders should cover more than a personalised and comprehensive assessment of the needs of patients and their caregivers. Comprehensive approaches, such as formalization of informal caregivers' role in the patient care management and planning, a more extensive range of available services and programs supported by diverse sources of funding, systemic developments and better integration of health and social care systems are essential for making the system of care more balanced. 

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Involving carers in risk assessment: a study of a structured dialogue between mental health nurses and carers

Background: Involving carers is a key priority in mental health services. Carers report the sharing of service users’ safety information by mental health nurses is problematic and seldom takes place. Aims: The impact of an intervention on consensus between nurses and carers on perceptions of risk was investigated. Methods: Carer–nurse risk consensus scores were measured pre- and post-introduction of a structured dialogue (paired t-test/ANOVA). Carer experience with involvement was surveyed pre-test (n = 60) and compared with the post-test intervention group (n = 32) (chi-square tests of linear-by-linear association). Results: Consensus and perceptions regarding type and severity of risk did not change significantly for carers or nurses after engaging in a structured dialogue. Statistically significant differences were found with carers reporting higher levels of satisfaction with services in four out of six areas surveyed. Conclusions: Findings provide support for increasing carer contribution to discussions regarding risk. Further work to embed carer involvement in clinical practice is warranted. 

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A Formative Evaluation of Patient and Family Caregiver Perspectives on Early Palliative Care in Chronic Obstructive Pulmonary Disease across Disease Severity

Rationale: Little direction exists on how to integrate early palliative care in chronic obstructive pulmonary disease (COPD).Objectives: We sought to identify patient and family caregiver early palliative care needs across stages of COPD severity. Methods: As part of the Medical Research Council Framework developmental phase for intervention development, we conducted a formative evaluation of patients with moderate to very severe COPD (forced expiratory volume in 1 s [FEV1]/FVC < 70% and FEV1 < 80%-predicted) and their family caregivers. Validated surveys on quality of life, anxiety and depressive symptoms, and social isolation quantified symptom severity. Semi-structured interviews were analyzed for major themes on early palliative care and needs in patients and family caregivers and across COPD severity stages. Results: Patients (n = 10) were a mean (±SD) age of 60.4 (±7.5) years, 50% African American, and 70% male, with 30% having moderate COPD, 30% severe COPD, and 40% very severe COPD. Family caregivers (n = 10) were a mean age of 58.3 (±8.7) years, 40% African American, and 10% male. Overall, 30% (n = 6) of participants had poor quality of life, 45% (n = 9) had moderate-severe anxiety symptoms, 25% (n = 5) had moderate-severe depressive symptoms, and 40% (n = 8) reported social isolation. Only 30% had heard of palliative care, and most participants had misconceptions that palliative care was end-of-life care. All participants responded positively to a standardized description of early palliative care and were receptive to its integration as early as moderate stage. Five broad themes of early palliative care needs emerged: 1) coping with COPD; 2) emotional symptoms; 3) respiratory symptoms; 4) illness understanding; and 5) prognostic awareness. Coping with COPD and emotional symptoms were commonly shared early palliative care needs. Patients with very severe COPD and their family caregivers prioritized illness understanding and prognostic awareness compared with those with moderate-severe COPD. Conclusions: Patients with moderate to very severe COPD and their family caregivers found early palliative care acceptable and felt it should be integrated before end-stage. Of the five broad themes of early palliative care needs, coping with COPD and emotional symptoms were the highest priority, followed by respiratory symptoms, illness understanding, and prognostic awareness.

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How Should End-of-Life Advance Care Planning Discussions Be Implemented According to Patients and Informal Carers? A Qualitative Review of Reviews

Context: The goal of advance care planning (ACP) is to help ensure that the care people receive during periods of serious illness is consistent with their preferences and values. There is a lack of clear understanding about how patients and their informal carers feel ACP discussions should be implemented. Objectives: The objective of this study was to synthesize literature reviews pertaining to patients' and informal carers' perspectives on ACP discussions. Methods: This is a systematic review of reviews. Results: We identified 55 literature reviews published between 2007 and 2018. ACP discussions were facilitated by a diverse range of formats and tools, all of which were acceptable to patients and carers. Patients and carers preferred health professionals to initiate discussions, with the relationships they had with the professionals being particularly important. There were mixed feelings about the best timing, with many people preferring to defer discussions until they perceived them to be clinically relevant. ACP was felt to bring benefits including a greater sense of peace and less worry, but it could also be disruptive and distressing. Patients and carers perceived many benefits from ACP discussions, but these may differ from the dominant narratives about ACP in health policy and may move away from the narratives of RCTs and standardization in research and practice. Conclusion: Researchers and clinicians may need to adjust their approaches as current practices are not aligned enough with patients' and carers' preferences. Future research may need to test implementation strategies of ACP interventions to elucidate how benefits from standardization and flexibility might both be realized. 

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Using Video Feedback at Home in Dementia Care: A Feasibility Study

Video feedback at home (VFH) aims to improve the well-being of informal caregivers and persons with dementia by training the caregiver to communicate successfully. This feasibility study had 2 aims: (1) to investigate possible effects regarding VFH, caregiver self-efficacy and the burden experienced, and the frequency of challenging behavior in persons with dementia, and (2) to perform a process evaluation of barriers and facilitators regarding the use of VFH. The respondents were caregivers of home-dwelling persons with dementia participating in VHF (N = 10), a group of caregivers who declined participating in VFH (N = 18), stakeholders (N = 6), and field experts (N = 55). The assessments performed were Positive and Negative Affect Scales, Cohen-Mansfield Agitation Inventory, Sense of Competence Scale, semistructured interviews, and questionnaires. Results demonstrated that caregivers were satisfied with VFH and that various (sub)scores on questionnaires improved. Caregivers mentioned a reluctance toward being filmed and both caregivers and referrers were unfamiliar with VFH. Recommendations have been made for health-care professionals and researchers to overcome these barriers.

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Validation of an instrument to assess informal caregivers' perceptions about the delivery of patient-centred care to people with intellectual disabilities in residential settings

BACKGROUND: Validated instruments are needed to assess the delivery of patient-centred care (PCC) to people with intellectual disabilities (PWIDs) needing 24-h care in residential settings. Eight dimensions of PCC have been identified: taking patients' preferences into account; access to care; emotional support; physical comfort; information and education; involvement of family and friends; coordination of care; and continuity and secure transition. Objective of this study is to validate an instrument to assess these eight PCC dimensions among informal caregivers of PWIDs in residential settings (institutional settings as well as group homes in the community). The original 24-item instrument was developed and validated among professionals providing care to PWIDs. METHODS: This study was conducted in a disability care centre in the Netherlands. All informal caregivers of PWIDs living in institutional settings or group homes in the community in need of 24-h care were invited to participate (n = 941). The response rate was 31% (n = 289). We tested the instrument using structural equation modelling, and examined its validity and reliability. RESULTS: Confirmatory factor analyses revealed good indices of fit and overall internal consistency, as represented by Cronbach's alpha values. All eight dimensions of PCC were related positively to satisfaction with care (all p ≤ 0.001). As expected, informal caregivers were less critical of PCC and its underlying dimensions, except for information and education, than were professionals working in the same disability care centre. CONCLUSIONS: The psychometric properties of the 24-item PCC instrument for informal caregivers (PCC-IC) were satisfactory, indicating that the PCC-IC is valid and reliable for the assessment of the eight dimensions of PCC among informal caregivers of PWIDs in residential settings.

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Time to move? Factors associated with burden of care among informal caregivers of cognitively impaired older people facing housing decisions: Secondary analysis of a cluster randomized trial

Background: Making health-related decisions about loved ones with cognitive impairment may contribute to caregiver burden of care. We sought to explore factors associated with burden of care among informal caregivers who had made housing decisions on behalf of a cognitively impaired older person. Methods: We conducted a secondary analysis within a cluster randomized trial (cRT) conducted in 16 publicly-funded home care service points across the Province of Quebec. The cRT assessed the impact of training home care teams in interprofessional shared decision making (IP-SDM). We assessed burden of care with the Zarit Burden Interview (ZBI) scale. We adapted Pallett's framework to inform our data analysis. This framework posits that factors influencing burden of care among caregivers fall within four domains: (a) characteristics of the caregiver, (b) characteristics of the cognitively impaired older person, (c) characteristics of the relationship between the caregiver and the cognitively impaired older person, and (d) the caregiver's perception of their social support resources. We computed the ZBI score and performed multilevel linear regression modelling. Results: Among 296 caregivers included in the dataset, the mean ZBI score was 29.8 (SD = 17.5) out of 88. The typical participant was 62.6 years old (SD = 11.7), female (74.7%), and caring for a mother or father (61.2%). Using multivariate analysis, factors significantly associated with caregiver burden mapped onto: caregiver characteristics (caregivers with higher burden were female, experienced higher decision regret and decisional conflict, preferred that their loved one move into the caregiver's home, into a private nursing home or a mixed private-public nursing home, and had made the decision more recently); relationship characteristics (spouses and children experienced higher burden); and caregiver's perception of social support resources (caregivers who perceived that a joint decision making process had occurred had higher burden). Conclusion: In line with the proposed framework used, we found that caregiver characteristics, relationship characteristics and caregiver's perception of social support resources were associated with burden of care. Our results will help design interventions to prevent and/or reduce caregivers' burden of care. Trial registration: NCT02244359. Date of registration: September 18, 2014. 

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The experiences of older caregivers of cancer patients following hospital discharge

Purpose: This study addressed the experiences of older caregivers of cancer patients in the 2 weeks following a hospital discharge. It sought to understand the challenges they face in providing supportive care to patients at home. Methods: Qualitative descriptive interviews with a narrative approach were conducted with each caregiver at 1 and 2 weeks following the patient’s discharge from the hospital. A thematic analysis approach was used to identify the themes that emerged from the caregiver interviews. Results: Caregivers were primarily Caucasian (77%), were mostly 68 years of age or older (62%), and were primarily caring for a spouse (69%). Three key themes emerged from the qualitative analysis: caregiver and patient wellness are connected, caregivers’ struggle with control issues, and challenges in communication with health professionals. Conclusions: These findings highlight psychosocial changes that caregivers experience over the 2-week time period following hospital discharge. Implications include the need to identify interventions to better prepare caregivers for the post-discharge period.

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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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Informal caregivers' judgements on sharing care with home care professionals from an intersectional perspective: the influence of personal and situational characteristics

The European policy emphasis on providing informal care at home causes caregivers and home care professionals having more contact with each other, which makes it important for them to find satisfying ways to share care. Findings from the literature show that sharing care between caregivers and professionals can be improved. This study therefore examines to what degree and why caregivers' judgements on sharing care with home care professionals vary. To improve our understanding of social inequities in caregiving experiences, the study adopts an intersectional perspective. We investigate how personal and situational characteristics attached to care judgements are interwoven. Using data of the Netherlands Institute for Social Research, we conducted bivariate and multivariate linear regression analysis (N = 292). We combined four survey questions into a 1-4 scale on 'caregiver judgement' (α = 0.69) and used caregivers' personal (such as gender and health status) and situational characteristics (such as the care recipient's impairment and type of care) as determinants to discern whether these are related to the caregivers' judgement. Using a multiplicative approach, we also examined the relationship between mutually constituting factors of the caregivers' judgement. Adjusted for all characteristics, caregivers who provide care to a parent or child with a mental impairment and those aged between 45 and 64 years or with a paid job providing care to someone with a mental impairment are likely to judge sharing care more negatively. Also, men providing care with help from other caregivers and caregivers providing care because they like to do so who provide domestic help seem more likely to be less satisfied about sharing care. This knowledge is vital for professionals providing home care, because it clarifies differences in caregivers' experiences and hence induce knowledge how to pay special attention to those who may experience less satisfaction while sharing care.

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Informal carers' experience and outcomes of assistive technology use in dementia care in the community: a systematic review protocol

Background: Dementia is one of the greatest health and care priorities globally. Caring for persons with dementia is a challenge and often leads to negative psychological, physiological and financial consequences for informal carers (family members or friends). Many informal carers experience moderate to severe levels of burden. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology (AT) devices such as electronic medication dispensers, robotic devices and motion detectors. However, little is known about informal carers’ experience and the impact of these technologies on them. This review aims to investigate the outcomes and experience of carers of persons with dementia, who live at home and use AT. Method: MEDLINE, Embase, CINAHL, AMED, ALOIS, PsycINFO, Trial registries and OpenGrey databases will be searched for studies of any design that have investigated carer experience and/or outcomes of AT use for persons with dementia living at home. Manual searches from reference lists of relevant papers will also be undertaken. Outcomes of interest are carers’ self-reported outcomes (which include perceived burden, quality of life and wellbeing) and carer experiences (such as usefulness, benefits and disadvantages of AT and impact on caregiver/care receiver relationship). Two independent reviewers will screen identified papers with pre-defined eligibility criteria and extract data using a bespoke extraction form. Discrepancies will be resolved in discussion with a third reviewer. A synthesis of eligible studies and summary will be provided. Discussion: A systematic review of quantitative, qualitative and mixed methods evidence of informal carers’ experience of AT use in dementia in the community will be carried out. It is anticipated that this will highlight (1) investigations on impact of AT use on carers, (2) outcome measures and experience questionnaires that have been used and (3) the types of studies carried out so far on this topic. The results from the review will be presented in a summary matrix of common types (e.g. mobile phones, alarms) and uses (e.g. communication, safety, personal care) of AT in dementia care and also identify AT that is not usually available through government or health system funding

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Care Stress Experienced by Caregivers of Elderly Individuals With Disabilities and the Coping Strategies Utilized: A Survey Study in the City of Nanjing, China

The objectives of this study were to (1) analyze the circumstances of caregivers of elderly individuals with disabilities; (2) present their levels of care stress; (3) examine family, market, and government factors that help reduce this care stress; and (4) identify the most effective method of alleviating stress for these individuals. Face-to-face interviews were conducted using standardized questionnaires. Caregivers experienced a moderate level of stress, which increased with time. Spouse caregivers experienced highest care stress, with psychological stress being greatest. All caregiver groups received different levels of care assistance from family, market, and government. Most received support from family, few paid for professional care market services, and most were unsatisfied with government care services. Stress was associated differently with care time, care assistance, and sociodemographic characteristics. Spouse caregivers, psychological counseling, and quality of public care services require further attention, with an integrated care system required to help alleviate care stress among caregivers.

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The experience of patients and family caregivers during hospital-at-home in France

Background: Public health policies tend to generalize the use of Hospital-At-Home (HAH) to answer the growing will of patients to be treated or to die at home. HAH is a model of care that provides acute-level services in the patient's home with the interventions of variety of health care professionals. Relatives participate also in the interventions by helping for sick patients at home, but we lack data on the care of patients and caregivers in HAH. The aim of this study was to make an inventory of the experiences of patients and family caregivers in HAH. Methods: The research was qualitative using nineteen semi-directed interviews from nine patients and ten caregivers of one care unit of Greater Paris University Hospitals' HAH, and the grounded theory was used to analyze the transcripts. Caregivers were also asked, after the interview, to fill in the Zarit Burden Inventory. Results: HAH remained mostly unknown for patients and caregivers before the admission proposition and the outlook of being admitted in HAH was perceived as positive, for both of them. Caregivers had a versatile role throughout HAH, leading to situations of suffering, but also had sources of support. The return home was considered satisfactory by both caregivers and patients, related to the quality of care and increased morale despite HAH's organizational constraints. We noted an impact of HAH on the relationship between the patient and the caregiver(s), but caused by multiple factors: the fact that the care takes places at home, its consequences but also the disease itself. Conclusion: HAH strongly involved the patient's caregiver(s) all along the process. HAH's development necessitates to associate both patients and caregivers and to take into account their needs at every step. This study highlights the need to better assess the ability of the caregiver to cope with his or her relative in HAH with acute and subacute care at home. 

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Satisfaction with Care in Late Stage Parkinson's Disease

In late stage Parkinson's disease (PD) (i.e., Hoehn and Yahr (HY) stages IV-V), both motor and nonmotor symptoms (NMS) are pronounced, and the patients become increasingly dependent on help in their daily life. Consequently, there is an increasing demand on health-care and social care resources for these patients and support for their informal caregivers. The aim of this study was to assess satisfaction with care in late stage PD patients and to identify factors associated with satisfaction with care. Moreover, to assess their informal caregivers' satisfaction with support and to identify factors associated with caregivers' satisfaction with support. Factors potentially associated with satisfaction with care/support were assessed in 107 late stage PD patients and their informal caregivers (n=76) and entered into multivariable logistic regression analyses. Fifty-eight (59%) of the patients and 45 (59%) of the informal caregivers reported satisfaction with their overall care/support. Patients satisfied with their care reported higher independence in activities of daily living (ADL) (Katz ADL index; P=0.044), less depressive symptoms (Geriatric Depression Scale, GDS-30; P=0.005), and higher individual quality of life (QoL) (Schedule for the Evaluation of Individual Quality of Life Questionnaire, SEIQoL-Q; P=0.036). Multivariable logistic regression analyses identified depressive symptoms (P=0.015) and independence in ADL (P=0.025) as independently associated with satisfaction with care. For informal caregivers, the analyses identified patients' HY stage (P=0.005) and caregivers' QoL (Alzheimer's Carers Quality of Life Inventory, ACQLI; P=0.012) as independently associated with satisfaction with caregiver support. The results indicate that an effective both pharmacological and nonpharmacological PD therapy is important, to adequately treat motor and NMS (e.g., depressive symptoms) in order to improve depressive symptoms and patient independence in ADL. This may benefit not only the patients, but also their informal caregivers.

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Perceptions of family caregivers on the implementation of the cordial older family nursing model: A qualitative study

Objectives: This study aims to understand the perceptions of family members as caregivers on the implementation of the cordial older family nursing model.; Method: This study used a qualitative phenomenological study with an in-depth interview. A total of 18 Participants were selected using a purposive sampling technique. The data from the participants was acquired through semi-structured interviews. Subsequently, the data were analyzed using the Colaizzi method. This study has obtained approval from the research ethics committee.; Results: This study highlighted five focal themes, include (1) expressed emotions among caregivers, (2) caregivers of the older persons, (3) the impact of the cordial older family nursing model, (4) caregivers' expression of gratitude toward the older persons, and (5) barriers to providing nursing through the cordial older family nursing model.; Conclusion: Family caregivers have some issues concerning how to provide care to older persons in wide-ranging activities. Post implementation of the cordial older family nursing model revealed that family caregivers showed positive values and attitudes such as emotional expression, types and means of care, and appreciation of the older persons.;

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Improving access to a multi-component intervention for caregivers and people with dementia

Due to the increasing social and economic costs of dementia, there are urgent calls to develop accessible and sustainable care for people with dementia and their caregivers. Multi-component non-pharmacological interventions (NPIs) appear effective in improving or maintaining daily functioning and well-being, but are typically labour-intensive for health care professionals, thus hindering access. The current study aimed to explore the feasibility and acceptability of a novel approach to widen access to NPI by involving caregivers to present part of the intervention and with staff from local support organizations instructed to train the caregivers. Trainers and caregivers were shown to comply with training instructions and the direct intervention costs were low. Feedback from trainers and caregivers was positive and well-being ratings from people with dementia and caregivers remained stable over time and caregivers’ sense of competence improved. The findings suggest that involving caregivers and trained non-professionals to provide the intervention is feasible and acceptable and could be a cost-effective solution to improve access to care.

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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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Feasibility of e-Pain Reporter: A Digital Pain Management Tool for Informal Caregivers in Home Hospice

Informal hospice caregivers often have difficulty managing patient pain at home. We developed a digital application, e-Pain Reporter, for informal caregivers to record and providers to monitor patient pain and pain management. The purpose of this study was (1) to assess the feasibility of informal caregivers using the e-Pain Reporter for 9 days in home hospice by investigating recruitment and retention and caregiver satisfaction with and frequency of use of the e-Pain Reporter and (2) describe patient pain characteristics and caregiver's barriers to painmanagement and self-efficacy in providing patient care in the home. One-group pre-post design was used. Patient-caregiver dyads were recruited from 1 hospice agency. Caregivers were asked to report all patient pain and pain management using the e-Pain Reporter. Feasibility of the e-Pain Reporter was assessed by the average number of times caregivers recorded breakthrough and daily pain and caregiver satisfaction with the app. The 27-item Barriers Questionnaire II and 21-itemCaregiver Self-efficacy Scale were administered at baseline. Fourteen dyads enrolled, 2 patients died, and 12 dyads completed the study. Mean number of pain reports over 9 days was 10.5. Caregivers reported high overall satisfaction with the e-Pain Reporter. Barriers scores were moderately high, suggesting erroneous beliefs and misconceptions about pain reporting and use of analgesics, but self-efficacy in managing pain was also high (93% confidence). Findings suggest that the e-Pain Reporter is a feasible method to report and monitor caregiver management of pain at home. Caregiver high barriers and high overconfidence suggest the need for an educational component to the e-Pain Reporter to address misconceptions about pain and pain management.

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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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Dyadic Support and Affect in Patient-Caregiver Dyads Following Hematopoietic Stem-Cell Transplantation: A Diary Study

Objective: Cancer and its treatment are highly stressful events that may significantly affect the daily emotional well-being of patients and their informal caregivers. Patient- and caregiver-reported received and provided support may contribute to both dyad members' fluctuation in daily affect, but few studies have examined these associations from a dyadic perspective so far. The current study examined predictions derived from 3 theories on patterns of relations between subjectively assessed dyadic provided and received support and daily affect within dyad members: (a) invisible support theory, (b) the suggestion that providing support may be better than receiving it, and (c) beneficial supportive equity. Method: Actor-partner interdependence models were tested using 28-day diary data from 200 patient-caregiver dyads. Diary assessments started on the first day following patients' discharge from the hospital, that is, about 3 weeks following patients' hematopoietic stem ceil transplantation (HSCT). Results: Daily invisible support was not related to more positive indicators of patients' or caregivers' daily affect. For patients' affect, findings generally supported the hypothesis of psychological benefits of support provision over receipt, in both concurrent and lagged analyses. For caregivers, visible received support from patients and supportive equity (i.e., both provided and received support relatively high), both concurrently and lagged, were related with better emotional state. Conclusions: The findings highlight the costs, benefits, and complexities of daily support transactions in dyads following HSCT, thus indicating the practical implications of the study: the importance of screening for support needs and abilities in both patients and caregivers.

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Patient and caregiver preferences for the potential benefits and risks of a seizure forecasting device: A best–worst scaling

Background: Epilepsy is the 4th most common neurological disorder and is characterized by recurrent, unpredictable seizures. The ability to forecast seizures is a significant unmet need and would have a transformative effect on the lives of people living with epilepsy. In an effort to address this need, the Epilepsy Foundation has committed effort and resources to promote the development of seizure forecasting devices (SFD). Objective: To promote user-centered design of future SFD, we sought to quantify patient and caregiver preferences for the potential benefits and risks of SFD. Methods: A community-centered approach was used to develop a survey incorporating a novel best–worst scaling (BWS) to assess preferences for SFD. A main-effect orthogonal array was used to design and generate 18 "prototypes" that systematically varied across six attributes: seizure forecasting probability, seizure forecasting range, inaccuracy of forecasting, amount of time required to use the device, how the device is worn, and cost. The dependent variable was the attributes that respondents selected the best and worst in each profile, and a choice model was estimated using conditional logistic regression, which was also stratified and compared across patients and caregivers. Respondents also indicated that they would accept each of the prototype SFDs if it were real. These acceptance data and net monetary benefits (relative to the least preferred SFD) were explored. Results: There were 633 eligible respondents; 493 (78%) completed at least one task. Responses indicated that 346 (68%) had epilepsy, and 147 (29%) were primary caregivers or family members of someone with epilepsy. The data show that short forecasting range is the most favored among experimental attributes, followed by mid forecasting range and notification of high chance of seizure. Having the device implanted is the least favorable attribute. Stated preferences differed between patients and caregivers (p < 0.001) for range of forecasting and inaccuracy of device. Caregivers preferred any range of forecasting, regardless of length, more than patients. Patients cared less about inaccuracy of the device compared to caregivers. The groups also differ in impact of fear of having seizures (versus actually having seizures) (p = 0.034) and on device acceptance. The acceptance of devices ranged from 42.3% to 95%, with caregivers being more likely to use a device (p < 0.05) for the majority of device profiles. Acceptance of devices varied with net monetary benefit of the best device being $717.44 more per month relative to the least preferred device. Conclusion: Our finding extends previous calls for seizure forecasting devices by demonstrating the value that they might provide to patients and caregivers affected by epilepsy and the feature that might be most and least desirable. In addition to guiding device development, the data can help inform regulatory decisions makers.

  • The epilepsy community desires a seizure forecasting device that can accurately gauge the likelihood of a seizure
  • It is crucial to incorporate the patient voice in the development of seizure forecasting devices.
  • Preferences for and willingness to use a forecasting device differ between patients and caregivers.
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Family Caregivers' Satisfaction With Specialized End-of-life Care Provided at Home: Assessment of the Psychometric Characteristics of the Icelandic Version of the Family Assessment of Treatment at the End of Life Questionnaire

Several studies have highlighted the significant role of families in end-of-life care. Carers' well-being may depend on how they experience the care and support provided to their loved ones. This study was conducted to investigate family caregivers' assessment of specialized end-of-life care in a sample of 119 close family members in Iceland. The response rate was 58.8% (n = 70). Furthermore, the aim was to assess the psychometric characteristics of the Icelandic version of Family Assessment of Treatment at the End of Life (FATE). Descriptive statistics were used to describe the characteristics of the data. Results indicate that good communication and understanding of all parties concerned are the foundation for family caregivers' satisfaction with end-of-life care. Participants were generally satisfied with the care provided, whereas some important aspects of care were rated as excellent. Evaluation of management of symptoms reported in this study should be given specific attention in future studies considering its unsatisfactory outcomes. Nurses need to be aware of the impact that physical suffering of the patient might have on the family caregivers. The Icelandic version of the Family Assessment of Treatment at the End of Life instrument is a psychometrically sound instrument useful for measuring caregivers' satisfaction with service provided at the end of life, although modifications would improve the instrument for use on this population.

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The Significance of Person-Centered Care for Satisfaction With Care and Well-Being Among Informal Caregivers of Persons With Severe Intellectual Disability

Person‐centered care (PCC) delivery and co‐creation of care (establishing productive patient‐professional interaction) are expected to lead to better patient outcomes. Given the prominent role of informal caregivers in care delivery processes to persons with intellectual disabilities (PWID), they are expected to benefit from person‐centered care (PCC) and co‐creation of care as well. This study aims to identify the relationship between PCC, co‐creation of care and outcomes among informal caregivers of PWID. A cross‐sectional survey was conducted in 2015 among informal caregivers of PWID (45.8% parents, 44.1% siblings, 10.1% other family member). All PWID were living in residential homes of a long‐term care organization in the Eastern part of the Netherlands. For every PWID, the most important informal caregiver was invited to participate. Nine hundred and forty‐one invitations were sent out and 289 of them responded (31% response rate). Mean age of informal caregivers was 61.80 (SD 11.21; range 23–90) years old. About half of the respondents (55%) were female and 23% were single. Most of the respondents (83%) were providing informal care for more than 10 years and 29% provided informal care for 8 hours per week or more. Correlation analyses indicated that PCC and co‐creation of care were positively related to informal caregivers' satisfaction with care and their own well‐being. Regression analyses showed that PCC is associated with satisfaction with care (β = 0.60, p < 0.001) and well‐being (β = 0.22, p < 0.01) while controlling for background characteristics. Relational co‐creation was also positively associated with satisfaction with care (β = 0.15, p < 0.01) and well‐being (β = 0.20, p < 0.01). This study provided the first empirical evidence that PCC and co‐creation of care matter for satisfaction with care and the well‐being of informal caregivers of PWID.

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Rehabilitation environments: Service users' perspective

Background: Design of rehabilitation environments is usually "expert" driven with little consideration given to the perceptions of service users, especially patients and informal carers. There is a need to engage with consumers of services to gain their insights into what design aspects are required to facilitate optimum physical activity, social interaction and psychological responses when they are attempting to overcome their limitations and regain function. Research design: Qualitative exploratory study. Method: Interviews were conducted with patients (n = 54) and informal carers (n = 23), and focus groups with rehabilitation staff (n = 90), from the three metropolitan South Australia rehabilitation health services, comprising different building and environmental configurations. Thematic analysis was assisted by the use of NVivo 11 qualitative software, with pooled data from all interviews and focus groups undergoing open, axial and finally selective coding. Results: Four major themes were identified as follows: (a) choice can be an Illusion in a rehabilitation ward; (b) access to outside areas is a priority and affects well‐being; (c) socialization can be facilitated by the environment; and (d) ward configuration should align with the model of care. Discussion and Conclusion: Participants who encountered the most restrictive environments accepted their situation until probed to consider alternatives; those who enjoyed the most choice and access to facilities showed the greatest enthusiasm for these affordances. Future architectural designers should therefore consider the perceptions of a wide range of consumers with varying experiences to ensure they understand the complex requirements of patients and that the ward design facilitates the optimum rehabilitation model of care.

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Motivations for being informal carers of people living with dementia: a systematic review of qualitative literature

Background: Informal, often family carers play a vital role in supporting people living with dementia in the community. With ageing populations, the part played by these carers is increasing making it important that we understand what motivates them to take on the role. This systematic review aimed to identify and synthesise qualitative literature describing what motivates people to care for someone with dementia.; Methods: The review followed the Centre for Reviews and Dissemination (CRD) guidelines. Six electronic databases were searched from their first records until August 2018. Synthesis was narrative.; Results: Twenty-six studies fitting the inclusion criteria were identified. Carers described multiple, inter-related motives for caring for someone with dementia. Caring was generally described as a reflection of long-standing family relationships between carers and the care recipients, whether by blood or marriage. Commonly offered motivations included love, reciprocity, filial piety, duty and obligation.; Conclusions: Perhaps the most striking finding was the similarity in these motivations irrespective of gender or relationship with the care recipient. Family relationship and shared history underlay most motivations. Future research should include more longitudinal studies incorporating within study comparisons between different demographic groups to give greater confidence in identifying similarities and differences between demographic groups.

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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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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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Experiences of family caregivers in green care farms and other nursing home environments for people with dementia: a qualitative study

Having a match between a nursing home and the preferences of people with dementia is beneficial for their well-being. It is suggested that innovative types of nursing homes such as small-scale living facilities and green care farms create a better match between their care environment and their residents. However whether this is also reflected into the experiences of informal caregivers is not known. Therefore, this study explores what their positive and negative experiences are with regard to green care farms, other small-scale living facilities, and traditional nursing homes.

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Connecting Caregivers to Support: Lessons Learned From the VA Caregiver Support Program

Development and evaluation of supportive caregiver interventions has become a national priority. This study's aim was to evaluate how caregivers participating in the Department of Veterans Affairs (VA) Caregiver Support Program (CSP) use and value supportive services. Qualitative semi-structured interviews ( N = 50 caregivers) were the core of a mixed-methods design, and surveys ( N = 160) were supplemental. Caregivers who had used CSP services valued emotional, functional, and health care navigational support, calling support groups and the program coordinator their "lifeline." However, many described a lack of connection with the program-not knowing about or successfully engaging in program services-and needed more information about available resources. Caregivers in rural areas or caring for individuals with specific diseases reported needing tailored services to meet their unique needs. Policy makers and practitioners should proactively promote supportive services for caregivers. Future research should explore strategies for reducing barriers to accessing tailored support to meet the needs of a diverse caregiver population.

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Systematic review of patient and caregivers’ satisfaction with telehealth videoconferencing as a mode of service delivery in managing patients’ health

Telehealth is an alternative method of delivering health care to people required to travel long distances for routine health care. The aim of this systematic review was to examine whether patients and their caregivers living in rural and remote areas are satisfied with telehealth videoconferencing as a mode of service delivery in managing their health. A protocol was registered with PROSPERO international prospective register of systematic reviews (#CRD42017083597) and conducted in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. A systematic search of Ovid Medline, Embase, CINAHL, ProQuest Health Research Premium Collection, Joanna Briggs Institute and the Cochrane Library was conducted. Studies of people living in rural and remote areas who attended outpatient appointments for a health condition via videoconference were included if the studies measured patient and/or caregivers’ satisfaction with telehealth. Data on satisfaction was extracted and descriptively synthesised. Methodological quality of the included studies was assessed using a modified version of the McMaster Critical Review Forms for Quantitative or Qualitative Studies. Thirty-six studies of varying study design and quality met the inclusion criteria. The outcomes of satisfaction with telehealth were categorised into system experience, information sharing, consumer focus and overall satisfaction. There were high levels of satisfaction across all these dimensions. Despite these positive findings, the current evidence base lacks clarity in terms of how satisfaction is defined and measured. People living in rural and remote areas are generally satisfied with telehealth as a mode of service delivery as it may improve access to health care and avoid the inconvenience of travel.

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Physical and mental health of Chinese grandparents caring for grandchildren and great-grandparents

The increasing worldwide prevalence and intensity of grandparenting has attracted an attention to its health implications for caregivers against the backdrop of population aging. Thanks to prolonged life expectancy and reduced infant mortality, extended families that comprise four generations, co-residential or not, are no longer rare in China. The current study examines health consequences when Chinese grandparents provide care to not only grandchildren but also their own elderly parents or parents-in-law (i.e., great-grandparents). Drawing on data from the 2011–2013 China Health and Retirement Longitudinal Study (CHARLS), mental health was captured by levels of life satisfaction and depressive symptoms, and physical health was measured by levels of high sensitivity C-reactive protein (CRP), hypertension, high-risk pulse rate, and diabetes. Overall grandparents who cared for grandchildren only had better mental and physical health, compared with non-caregivers. There was some evidence that the 'sandwich' grandparents who cared for both grandchildren and great-grandparents reported greater life satisfaction, fewer depressive symptoms, and reduced hypertension compared with non-caregivers. The health advantage of caregiving was most pronounced in urban grandfathers whose caregiving conformed to the norm of filial piety and who did so most likely to seek emotional reward instead of an intergenerational time-for-money exchange. In contrast, rural grandmothers were the most vulnerable group and their health disadvantage seemed to arise from caring for great-grandparents. These findings highlight the importance of rural-urban context and gender role in studying the health effects of intergenerational caregiving on Chinese grandparents. • About 30% of the Chinese elderly are grandparents in four-generation families. • The majority of them care for grandchildren, great-grandparents, or both. • Urban grandfathers enjoy health benefits from intergenerational caregiving. • Rural grandmothers suffer health risks from intergenerational caregiving.

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Caregiver Reward and Burden: Differing Constructs in Family Members Providing Care for Medically Ill Homebound Older Adults

Objective: This study examined the relationship between caregiver burden and reward and how each relates to factors, such as depression, within the caregiving dyad.; Method: A total of 101 older adults and their primary family caregivers were recruited upon enrolling in home health care services. Patients were assessed for sociodemographic information, depression, disability, pain, and caregiver support at baseline and at 8 weeks. Caregivers were assessed at baseline for sociodemographic information, depression, caregiver burden, caregiver reward, and caregiving tasks they provide.; Results: Burden and reward were significantly inversely correlated, but differentially associated with distinct patient and caregiver variables. Patients whose caregivers reported higher baseline levels of caregiver reward were more likely to have lower depression scores at follow-up.; Discussion: Given that different aspects of patients and caregivers influence reward and burden, assessing caregivers for both burden and reward may better target caregiver interventions at the individual and family levels, particularly for older adult depression.

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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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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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Positive and negative impacts of schizophrenia on family caregivers: a systematic review and qualitative meta-summary

Purpose: Schizophrenia places a heavy burden on the individual with the disorder, as well as on his or her family; this burden continues over the long course of the disease. This study aimed to provide an overview of the positive and negative impacts of schizophrenia on family caregivers.; Methods: From April to June 2017, two investigators conducted a systematic review and meta-summary of studies obtained from five electronic databases and the footnotes and citations of eligible studies. Qualitative studies that explored the experiences of family caregivers of individuals with schizophrenia were included. Study findings published between 1993 and 2017 were extracted and synthesised using narrative and summative approaches.; Results: After the removal of duplicates, independent reviewers screened 864 records. Subsequently, 46 full-text articles were assessed for eligibility and 23 papers were included in the synthesis. Negative impacts identified were traumatic experiences, loss of expectation of life and health, lack of personal and social resources, uncertainty and unpredictability, family disruption, conflict in interpersonal relationships, difficulty in understanding, and stigma and heredity. Meanwhile, the positive impacts identified were family solidarity, admiration, affirmation, affection, compassion, learning knowledge and skills, self-confidence, personal growth, and appreciation.; Conclusions: Analysis of the studies suggested that family members of individuals with schizophrenia face a series of traumatic situations during the course of the illness. Their subsequent experiences can be conceptualised as a continuous circle of caregiving, in which the positive impacts can be centrally positioned within the negative impacts.

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When chemotherapy fails: Emotionally charged experiences faced by family caregivers of patients with advanced cancer

Objective: To explore family caregivers' emotional experiences while caring for patients with advanced cancer and navigating distressing information, awareness of dying, and difficult decisions. Methods: Qualitative descriptive study of semi-structured interviews with 92 bereaved caregivers of patients with advanced cancer. Interviews explored caregivers' experiences as patients transitioned out of active cancer treatment and neared the end of life. Results:  Included in caregivers' characterization of this transition time were three particularly emotionally charged experiences. The first occurred when caregivers felt jolted into awareness that patients were dying.They were startled to realize that patients would die sooner than expected; some expressed frustration that they had not been adequately warned. In the second, caregivers felt conflicted when involved in decisions that pitted patients' preferences against what caregivers felt patients needed, resulting in ambivalence, guilt, and grief. Thirdly, caregivers who felt they did their best for patients expressed fulfillment and gratitude. Conclusion: Caregivers of patients with advanced cancer face unique, emotionally charged experiences that can lead to distress and affect care at the end of life. Practice Implications: Awareness of these situations may help oncology teams to provide sufficient guidance and support, partner with caregivers to clarify patients' needs, and deliver higher quality care. 

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Palliative care for patients with motor neurone disease and their bereaved carers: a qualitative study

Background: Internationally, it is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers. However the optimal role of generalist and specialist palliative care, and how it integrates with specialist neurology services, is not fully established. Using a qualitative approach we sought to examine end of life care for people with MND in Northern Ireland, and the role of specialist and generalist palliative care. Methods: Qualitative study involving a convenience sample of 13 bereaved carers recruited using the Northern Ireland MND Register. Data collection consisted of semi-structured interviews with the bereaved carers of patients who had died 3–24 months previously with a diagnosis of MND. Data were analysed using thematic analysis. Results: Findings illuminated variations in relation to the levels of holistic care provided to this cohort of patients. Unmanaged respiratory and psychological symptoms caused perceived distress amongst patients. Participants' experiences additionally highlighted reluctance amongst patients with MND to engage with services such as specialist palliative care. Conversely, for those who received input from specialist palliative care services carers portrayed these services to be of great benefit to the patient. Conclusions: Patients with MND in Northern Ireland may have many unmet holistic care needs. Key areas that require particular focus in terms of service development include neuromuscular respiratory physiotherapy and psychological services for patients. Future research must explore an optimal model of holistic care delivery for patients with MND and how this can be effectively integrated to best meet this patient cohorts palliative care needs.

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Family caregiver satisfaction with inpatient rehabilitation care

Introduction: Informal family caregivers play an increasingly important role in healthcare. Despite their role in ongoing management and coordination of care, caregiver satisfaction with the healthcare services care recipients receive has been understudied. We sought to assess what influences caregiver satisfaction with inpatient care provided to their care recipient among caregivers of veterans with traumatic brain injury (TBI) and polytrauma.; Methods: Data from the Family and Caregiver Experience Survey, a national survey of caregivers of veterans with TBI and polytrauma, was used to explore factors associated with caregiver satisfaction with the care his/her care recipient received while an inpatient at a US Department of Veterans Affairs (VA) Polytrauma Rehabilitation Center. Caregiver and care recipient demographic and injury factors and potential addressable factors including social support, caregiver training received, and caregiver perceptions of being valued by the VA were evaluated for their associations with caregivers' satisfaction with their care recipients' healthcare.; Results: The majority of the 524 caregivers reported being mostly or very satisfied with their care recipient's inpatient care (75%, n = 393). Higher satisfaction with inpatient care was significantly associated with greater caregiver social support, receipt of training from the VA, and perceptions of being valued by the VA, both on univariate analysis and after controlling for care recipient TBI severity and caregiver's relationship to the care recipient.; Conclusions: Results suggest that supporting a strong social network for caregivers, providing caregiver training, and employing practices that communicate that family caregiving is valued by providers and healthcare organizations are promising avenues for improving caregiver satisfaction.

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My husband is not ill; he has memory loss - caregivers´ perspectives on health care services for persons with dementia

Background: To explore informal caregivers' perspectives and perceived needs related to health care services/activities for older adults with dementia, in order to understand barriers and facilitators to participation. The study represents a first step, and explores challenges to overcome, in order to design new activities and services adapted to older adults with dementia.; Methods: We used a qualitative approach where eight caregivers of people with a dementia diagnosis were included. We recruited participants from a counselling service centre, for home dwelling people with dementia and their families, in a Norwegian municipality. We transcribed data from two focus group interviews and completed analyses by use of Systematic Text Condensation method.; Results: The findings indicate that current health care services for people with dementia do not meet the needs of either the people with dementia or their caregivers. The few activities/services offered are characterised by passivity and lack of individual and personalised care. Existing health care services and new activities should consider each individual's resources, interests, and physical function to ensure that both people with dementia and their caregivers want to accept support.; Conclusions: To develop health care services and activities for people with dementia, participation and involvement from both people with dementia and their caregivers is necessary. People with dementia are more than their diagnosis. Future health care providers have to widen their focus and consider the individual person with dementia.

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"Death Lay Here on the Sofa": Reflections of Young Adults on Their Experience as Caregivers of Parents Who Died of Cancer at Home

The prevalence of terminally ill patients, who die at home, is increasing. The aim of this study was to address the meaning of being young adults, who were the caregivers of their dying parents. In-depth, semistructured interviews were conducted with 14 Israeli Jewish young adults, who had been the primary caregivers for parents who had cancer and eventually died at home. Three themes emerged: (a) "I was Chosen and was led into that situation": modes of taking on and performing the role of a caregiver, (b) "My life was on hold": the experience of performing the caregiving role, and (c) "I underwent . . . the real school of life": caring for the dying parent as an imprint on self-development. Participants integrated compassionate caring into their identity, reflecting an empowering encounter of young carers with their dying parents as a process of growth in the face of harsh, stressful experiences. 

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Impact of medical assistance in dying (MAiD) on family caregivers

Medical assistance in dying (MAiD) is a globally polarising topic which often sparks debate surrounding the ethical and moral dilemmas that arise with a life-ending intervention. To gain a better understanding of this intervention, it is important to explore the experience of those most intimately affected by MAiD. Family caregivers of those with a terminal illness are the backbone of the healthcare and support team, often providing a substantial amount of informal care while at the same time coping with their own distress and anticipatory grief. However, we know the least about how MAiD impacts the psychosocial well-being of these same individuals. The aim of this article is to explore the experience of MAiD from the family caregiver perspective, namely their beliefs and opinions about the intervention, how the process of MAiD impacts them, how the intervention shapes their view of their loved one's quality of death, and the psychosocial outcomes after the passing of their loved one. Beyond the literature, challenges within both the clinical and research realms will be discussed and future directions will be offered. While MAiD is currently legal in only a small number of countries, a better understanding of the impact of MAiD will help inform policy and legislation as they are developed in other jurisdictions. Further, this article aims to inform future research and clinical interventions in order to better understand and support those seeking MAiD and their families.

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Six-Month Effectiveness of Remote Activity Monitoring for Persons Living With Dementia and Their Family Caregivers: An Experimental Mixed Methods Study

Background and Objectives This study aimed to evaluate if and how remote activity monitoring (RAM) improves caregiver outcomes for family members providing care for persons living with Alzheimer's disease or a related dementia (ADRD). Research Design and Methods We conducted an embedded experimental mixed methods study of 132 persons living with ADRD and their family caregivers (n = 64 randomly assigned to RAM treatment condition). In addition to baseline and 6-month quantitative survey data on context of care, primary objective stressors, resources, self-efficacy/competence, and distress collected from caregivers, 6-month RAM review checklists contained open-ended, qualitative information on perceived acceptability of the technology. Results The RAM system did not exert statistically significant effects on caregiving outcomes over a 6-month period. However, qualitative analyses identified several potential moderators of RAM technology effectiveness that were subsequently tested in post-hoc repeated measures analyses of variance. Caregivers who utilized RAM technology and cared for relatives with: (a) less severe cognitive impairment; and (b) difficulty navigating around the home were more likely to indicate statistically significant increases in competence and self-efficacy, respectively. Discussion and Implications We found that the early months spent calibrating and modifying RAM are potentially challenging for families, which may prevent this technology from improving caregiving outcomes during initial months of use. Remote activity monitoring may work optimally for caregivers of persons living with ADRD in specific situations (e.g. earlier stages of dementia; wandering risk), which suggests the need for appropriate needs assessments that can better target such innovations.

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How Is End-of-Life Care With and Without Dementia Associated With Informal Caregivers' Outcomes?

Background: Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving.; Objective: To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers' burden of care and positive experiences and explain differences in outcomes.; Design: Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cross-sectional survey and analyzed using analysis of variance and multivariable regression analyses.; Measurements: The Self-Perceived Pressure from Informal Care Scale and the Positive Experiences Scale were administered to assess caregiver burden and positive experiences with providing care.; Results: Dementia care, both at EOL and not at EOL, was associated with the most caregiver burden relative to regular care. Dementia care not at EOL was associated with the fewest positive experiences, and EOL care not in dementia with the most positive experiences. Only the differences in burden of care could be explained by variables related to stressors based on Pearlin stress-coping model.; Conclusions: Informal caregivers of people with dementia are at risk not only of high caregiver burden but also of missing out on positive experiences associated with caregiving at EOL. Future research should examine how dementia-related factors reduce positive caregiving experiences, in order to make palliative care a positive reality for those providing informal care to community-dwelling persons with dementia.

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Experience of companionship among family caregivers of persons with dementia: A qualitative study

We examined how caregivers experienced the influence of dementia on their relationships with afflicted family members. Family caregivers (n = 15; 11 women and four men; age 39–92 years) of people with dementia participated in semi-structured interviews. The data were analyzed according to Kvale and Brinkman. The analysis identified one overarching theme, experiences of companionship, and four subthemes, namely experiences of loss and loneliness; role change; communication alteration; and caring considerations and coping resources. The caregivers described their companionship with the family member, including warm feelings of reciprocity, as well as contradictory feelings, such as feelings of being burdened. They expressed a desire to continue caring for their relative and emphasized the positive aspects of their relationship. Knowledge about dementia, together with a good relationship with their ill family member, facilitated the caring role. These results highlight the importance of receiving information about dementia-related challenges and the implications of being a caregiver.

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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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Quality of life and burden of informal caregivers providing care for patients with low function agility in the home environment

Background. Providing care to patients with low function agility in the home environment becomes a burden and leads to the worsening of the informal caregiver's quality of life. Objectives. Aim of the research was to assess the quality of life of informal caregivers in the context of their burden linked to the care provided to chronically ill patients with low function agility in the home environment. Material and methods. Research was conducted in five public healthcare facilities, from September 2016 until February 2017, and included 138 informal caregivers. The WHOQoL-AGE scale was used to assess caregivers' quality of life, and the COPE Index was employed to assessed caregivers' burden. Results. According to WHOQoL-AGE, the average value of caregivers' quality of life was 70.14 points. Caregivers' burden according to the COPE Index Negative Impact of Care subscale was: M = 11.80; Positive Value of Care subscale: M = 13.71; and in Quality of Support subscale: M = 12.46. Statistical importance was at p ≤ 0.01 for WHOQoL-AGE scale, and the burden according to the COPE Index. Conclusions. Informal caregivers' quality of life according to the WHOQoL-AGE scale corresponds significantly with caregivers' burden according to the COPE-Index, in all of the analysed domains. Along with the increase of the negative influence of the care, general quality of life with all its subscales, as well as satisfaction, decreases. Caregivers' quality of life increases along with the increase of the satisfaction connected to the provided care, and with receiving support from informal and formal healthcare.

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Psychological outcomes of eCare technologies use for informal carers: A scoping study

Background The use of eCare technologies could address some of the challenges related to demographic changes and decreased care potential. However, little is known about eCare technologies' potential in relation to the psychological outcomes for informal carers. Research aim This study aims to provide an overview of the psychological outcomes of eCare technologies use for informal carers. Methodology A scoping study was done, where peer reviewed papers, written in English, investigating the use of eCare technologies in informal care and their psychological outcomes on informal carers, were included. Non-scientific studies, and studies which focused on psychological counselling or training through the Internet or phone, were excluded. The data search was conducted in Academic search complete, Scopus, ProQuest and Science Direct databases, from 12 October 2017 to 17 October 2017 and included 16 studies published since 2013. Results Six psychological outcomes were identified (peace of mind, reassurance, anxiety, depression, stress and burden). Out of those psychological outcomes, positive outcomes of eCare technologies use for informal carers were counted 37 times and negative outcomes only eight, suggesting a positive prevalent pattern of eCare technologies use for informal carers. Conclusion The outlined interplay between the positive and negative psychological outcomes suggest that the use of eCare technologies in informal care warrants further research, for instance whether the eCare technologies actually fulfil older people and informal carers' needs. 

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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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Perspectives of carers of people with intellectual disability accessing general practice: “I’d travel to the ends of the earth for the right person”⁣

Background: Informal carers often play an integral role in the lives of people with intellectual disability (ID) residing in the community. In this study, we explored the extent to which carers of people with ID believe that the health care needs of the person they care for are being accommodated by general practice. Method: Semi-structured interviews were conducted with 25 informal carers to people with ID living in Australia. Results: Carers of people with ID report that they experience considerable barriers to accessing general practice care on behalf of the people they care for. Conclusions: Given the ever-increasing number of people with ID now living in the community and their vulnerability to health problems, it is imperative that future research focuses on the development of strategies to overcome the barriers identified in this study. 

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Family-led rehabilitation in India (ATTEND)—Findings from the process evaluation of a randomized controlled trial

Background: Training family carers to provide evidence-based rehabilitation to stroke patients could address the recognized deficiency of access to stroke rehabilitation in low-resource settings. However, our randomized controlled trial in India (ATTEND) found that this model of care was not superior to usual care alone. Aims: This process evaluation aimed to better understand trial outcomes through assessing trial implementation and exploring patients’, carers’, and providers’ perspectives. Methods: Our mixed methods study included process, healthcare use data and patient demographics from all sites; observations and semi-structured interviews with participants (22 patients, 22 carers, and 28 health providers) from six sampled sites. Results: Intervention fidelity and adherence to the trial protocol was high across the 14 sites; however, early supported discharge (an intervention component) was not implemented. Within both randomized groups, some form of rehabilitation was widely accessed. ATTEND stroke coordinators provided counseling and perceived that sustaining patients’ motivation to continue with rehabilitation in the face of significant emotional and financial stress as a key challenge. The intervention was perceived as an acceptable community-based package with education as an important component in raising the poor awareness of stroke. Many participants viewed family-led rehabilitation as a necessary model of care for poor and rural populations who could not access rehabilitation. Conclusion: Difficulty in sustaining patient and carer motivation for rehabilitation without ongoing support, and greater than anticipated access to routine rehabilitation may explain the lack of benefit in the trial. Nonetheless, family-led rehabilitation was seen as a concept worthy of further development.

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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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A qualitative study of older informal carers’ experiences and perceptions of their caring role

Background and aims: Unpaid family carers, or caregivers as they are also known, often play a vital role in supporting others with illness or disability living in the community. Overall numbers of carers are growing but numbers of older carers are increasing particularly rapidly as populations age worldwide. However, little research has focused on this important older group. This qualitative study therefore investigated older carers’ experiences and their perceptions of their role. Methods: Five digitally recorded focus groups with carers from Greater London were undertaken. Recordings were transcribed and analysed thematically. Findings: Forty-four carers aged 70–87 years participated. Most were female and two-thirds were spouses or partners. Overall, the carers thought their experiences were similar to those of younger adult carers and included both satisfying and challenging facets. However, they thought that some of the more negative aspects of the role were more difficult for older carers. Their own declining physical and emotional health and strength were seen as making it harder to access support and maintain social contacts. Loneliness both outside and within relationships featured prominently and was perceived as especially significant for housebound carers and when caring for someone with dementia. Many of these older carers also worried about the future when they might no longer be able to be a carer due to their own ill-health or death. Conclusions: Older carers find their role challenging and future investigations should focus on identifying means of reducing their isolation and supporting them with planning for the future. 

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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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Qualitative, exploratory pilot study to investigate how people living with posterior cortical atrophy, their carers and clinicians experience tests used to assess vision

Objectives To investigate the experiences and views of people living with posterior cortical atrophy (PCA), their family carers and healthcare professionals of vision assessment tests. Design A qualitative investigation using video recordings of vision assessments, semistructured interviews and audio recordings of a focus group. Interviews and focus group used broad, open questions around the topic to prompt and guide discussion. Video and audio recordings were transcribed, manually coded and analysed using framework analysis. Setting University College, London's Queen Square neurology centre provided the venues for all stages of the research. Participants Participants living with PCA were one male and two females (age range 67-78 years). Health professional participants were a neurologist (male), two ophthalmologists (male) and an optometrist (female). Primary and secondary outcomes (1) Experiences and attitudes of people living with PCA and health professionals to vision assessment tests, (2) views of health professionals and people living with PCA of whether some tests are more effective at discriminating between cortical vision problems and vision problems related to optical or ocular causes. Results Patients were able to engage with and complete a number of tests. Their partners played a vital role in the process. Participants reported that simple, short tests were more effective than more subjective tests. Examples of tests that appeared to be more problematic for the patient participants were the Amsler Grid and visual field analysis. Conclusions Although limited in scope and execution, the project suggests that some vision assessment tests are likely to support health professionals to discriminate between cortical and optical/ocular causes of visual impairment. It supports existing evidence that there are vision assessments that people with dementia can engage with and complete. We identify areas of importance for future research and make tentative suggestions for clinical practice. 

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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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Carer perspectives of people diagnosed with borderline personality disorder: A scoping review of emergency care responses

Background: Caring for a person with borderline personality disorder remains largely stigmatised and misunderstood. When a crisis arises, carers often seek help with the person they care for in emergency care settings such as the emergency department. The aim of this review was to explore, locate and compile the literature regarding the perspectives of family carers for a person with borderline personality disorder in an emergency care setting with a focus on nursing practices. This review advances understandings of carer perspectives in emergency care settings. Methods: The Joanna Briggs Institute (2015) [1], methodology for scoping reviews guided this review. A search of Emcare, Medline and Ovid Nursing was performed during April 2018, to identify literature where carer views and perspectives on engaging with emergency care services were reported. A grey literature search was also conducted. A total of ten articles and reports were included in this review. Consultation with a carer support group precipitated this review, which assisted in the formulation of the research questions. Results: Papers found via the study focused on health professional responses, rather than on nursing practice. Findings indicate that carers often perceive emergency departments as the only option for emergency care in a crisis. Carers require information about how to effectively manage a crisis with their loved one more effectively. Conclusion: This scoping review identified that carers are often not consulted or engaged with by health professionals. Carers often perceive that nurses and health professionals have a lack understanding about the consumer's conceptualisation of distress and the nature of BPD, which becomes a barrier to effective crisis support and management. The literature often reported that a trusting and collaborative relationship between carers, nurses and health professionals demonstrated improved outcomes for the carer and consumer. 

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Borderline personality disorder: Carers need compassion and collaboration when seeking emergency care for their loved one

Borderline Personality Disorder (BPD) is a common mental illness impacting around 1 to 4% of the Australian population (National Health and Medical Research Council (NHMRC) 2012). Perspectives of family carers for people diagnosed with borderline personality disorder: A scoping review on the emergency care responses of nurses and other health professionals, Australasian Emergency Care. Managing people with mental health presentations in emergency departments: A service exploration of the issues surrounding responsiveness from a mental health care consumer and carer perspective, 

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Trajectories of caregiver burden in families of adult cystic fibrosis patients

Objectives: Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. Methods: This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time. Results: Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time. Significance of results: Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.

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Caregiver experience, health‐related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross‐sectional study

Aims and objectives This study set out to describe caregiver experience, health‐related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis and to explore factors associated with caregivers’ health‐related quality of life and life satisfaction. Background Knowledge about factors related to caregivers’ health‐related quality of life and life satisfaction is important for identification of those at risk for ill health and for development of support and care. Design A cross‐sectional study.MethodsForty‐nine informal caregivers and 49 patients were included. Standardised and study‐specific questionnaires were used for data collection on caregiver experience (Caregiver Reaction Assessment), health‐related quality of life (EuroQol Visual Analogue Scale, SF‐36), life satisfaction (Life Satisfaction Checklist) and caregiver‐ and patient‐related factors. Associations were explored by regression analyses. Results Both positive and negative caregiver experience were reported, and health‐related quality of life and life satisfaction were below national reference values. Positive experience was associated with better and negative with worse mental health‐related quality of life. Factors related to informal caregivers (sex, age, living conditions) and patients (anxiety and/or depression) were related to caregivers’ health‐related quality and life satisfaction. Conclusion The results indicate the need to consider the individual caregiver's experience when planning services, care and support. It is important to adopt person‐centred care, not only for patients but also for their informal caregivers, as factors related to both parties were associated with the informal caregivers’ health‐related quality of life and life satisfaction. Relevance to clinical practice Our study suggests that promoting positive experience and providing services and support to reduce negative aspects of caregiving might be important strategies for healthcare personnel to improve informal caregivers’ health.

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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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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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Family Caregivers' Experiences of Within-Hospital Handoffs for Older Adults in Acute Care

Family caregivers' experiences during within-hospital handoffs between acute care units are not well understood. Qualitative description methodology was employed to describe family caregivers' experiences during their loved ones' handoffs. Semistructured interviews were conducted with 10 caregivers of hospitalized older adults. Three themes emerged: Lack of care coordination, Muddling through handoffs alone, and Wariness toward the care delivery system. Findings can help clinicians shape their interactions with caregivers to maximize their involvement in post–hospital care.

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Strain and Satisfaction in Caregivers of Veterans With Type 2 Diabetes

Purpose The purpose of this study was to identify predictors of informal caregiver strain and satisfaction associated with caring for veterans with type 2 diabetes (T2DM). Methods This study is a secondary analysis of data from 2 prior studies of caregiving in the Veterans Health Administration. The original studies used a telephone survey to examine veteran and caregiver (CG) characteristics associated with caregivers’ responses to caregiving. The data reported here include 202 veterans with T2DM and 202 caregivers. Linear regression models were generated alternatively using forward and backward selection of veteran and caregiver characteristics. Results Higher caregiver strain was associated with the CG providing activities of daily living assistance, CG receiving less help from friends and relatives and use of unpaid help, CG use of coping strategies, and CG depression scores. Predictors of CG satisfaction included better relationship quality with the veteran and receipt of social support. Conclusions The important role of family and friends in supporting patients with T2DM is widely accepted. Clinicians may engage the caregiver when there is inadequate self-care by the patient. However, less attention has been focused on the effect of caregiving on the caregiver. Greater attention needs to be focused on in-depth exploration of family needs to design and test effective interventions to meet these needs.

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Factors related to sense of competence in family caregivers of people living with dementia in the community: a narrative synthesis

Objectives: Sense of competence defines a caregiver's feeling of being capable to manage the caregiving task and is an important clinical concept in the caregiving literature. The aim of this review was to identify the factors, both positive and negative, associated with a caregiver's perception of their sense of competence.; Design: A systematic review of the literature was conducted, retrieving both quantitative and qualitative papers from databases PsycINFO, CINAHL, EMBASE, and Medline. A quality assessment was conducted using the STROBE and CASP checklists, and the quality rating informed the inclusion of papers ensuring the evidence was robust. Narrative synthesis was employed to synthesize the findings and to generate an updated conceptual model of sense of competence.; Results: Seventeen papers were included in the review, all of which were moderate to high quality. These included 13 quantitative, three mixed-methods and one qualitative study. Factors associated with sense of competence included: behavioral and psychological symptoms of dementia (BPSD), caregiver depression, gratitude, and the ability to find meaning in caregiving.; Conclusions: The results of this review demonstrate that both positive and negative aspects of caring are associated with caregiver sense of competence. Positive and negative aspects of caregiving act in tandem to influence caregiver perception of their competence. The proposed model of sense of competence aims to guide future research and clinical interventions aimed at improving this domain but requires further testing, as due to the observational nature of the include papers, the direction of causality could not be inferred.

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Development and validation of the Measure of Supporting Co-occupation for family caregivers

Introduction It is important to understand the experiences of elderly people with dementia and their family caregivers. Moreover, the maintenance of family caregivers’ satisfaction with co-occupation is important to ensure that they intend to continue providing care. This study developed and validated the Measure of Supporting Co-occupation, which assesses co-occupation involving elderly people with dementia and their family caregivers. Method This study used a cross-sectional design and questionnaire survey. Participants were recruited from 21 institutions. Descriptive statistics were calculated for the following domains: ‘evocation of the story of co-occupation’, ‘intention to continue co-occupation’ and ‘preferred co-occupation’. The construct validity and reliability of the ‘intention to continue co-occupation’ domain were examined using exploratory factor analysis, confirmatory factor analysis and Cronbach’s alpha. The criterion-related validity of the ‘intention to continue co-occupation’ was examined by means of correlations with other scales. Results There were 115 pairs of participants. Good criterion-related validity and internal consistency were confirmed for the ‘intention to continue co-occupation’ domain. However, confirmatory factor analysis showed insufficient model fitness. Conclusion The ‘intention to continue co-occupation’ domain is not ready for clinical application due to insufficient model fitness, it is necessary to revise the Measure of Supporting Co-occupation.

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Exploring the quality of the dying and death experience in the Emergency Department: An integrative literature review

Aim The aim of this integrative literature review was to explore the quality of the dying and death experience in the Emergency Department from the perspective of staff and carers. Background Death in the Emergency Department is common. Understanding the quality of the death and dying experience of patients and their family members is crucial to building knowledge and improving care. Design Systematic integrative literature review reported following the PRISMA guidelines. Data sources Pubmed, Cumulative Index to Nursing and Allied Health Literature, Magonline (internurse), and the Cochrane library. Articles used were published in English during 1990- 2017. Review method Appraisal and thematic analysis. Results Sixteen articles are included. Eight themes emerged from the literature: care in the Emergency Department is about living not dying, staff perceive that death is a failure, staff feel underprepared to care for the dying patient and family in this environment, there is limited time for safe standards of care, staff stress and distress, staff use of distancing behaviours, the care of the dying role is devolved from medics to nurses at the end of life, and patients and staff perceive that the Emergency Department is not the preferred place of death Conclusion There are areas of concern about end of life care in the Emergency Department. To improve practice and to ensure that a good death occurs, further research is needed. There is a need to understand more about the experience of caregivers when a relative or friend dies in the Emergency Department.

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Changes in caregiving appraisal among family caregivers of persons with dementia: A longitudinal study over 12 months

Aim: The main purpose of this study was to identify changes in both caregiver burden and positive caregiving appraisal over time, as well as factors affecting these variables. Methods: This analysis included 41 in‐home family caregivers who had completed questionnaires at baseline, 6 months, and 12 months. We assessed various caregiver and care recipient characteristics, caregivers' positive appraisal of caregiving, caregiver burden, desire to continue caregiving, severity of care recipients' cognitive impairment, and behavioural and psychological symptoms of dementia. Results: We observed no significant differences in caregiver burden, positive caregiving appraisal, or behavioural and psychological symptoms of dementia across the three measurement times. However, we did find differences in the desire to continue caregiving and in the personal strain and role strain dimensions of caregiver burden. Conclusion: Overall, our study suggests that caregiving service providers should consider support that focuses on improving the subjective caregiving appraisals of caregivers.

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Evaluation of family caregiver satisfaction with a mental health inpatient service

Objective: To evaluate the satisfaction of family caregivers with a mental health inpatient service in Brazil.; Methods: This was a cross-sectional study with a quantitative approach. A sample of 80 caretaking family members answered the abbreviated version of the Brazilian Mental Health Services' Family Satisfaction scale (SATIS-BR) and a sociodemographic questionnaire. Categorical variables were expressed as frequencies and percentages and quantitative variables as means and standard deviations. Interactions among variables and indexes of the scale were analyzed using the Student's t test, Pearson correlation coefficient and analysis of variance.; Results: The results showed a high mean overall satisfaction score when considering the categorization of the items of the scale, with higher satisfaction indexes in the 'Treatment results' subscale and lower ones in the 'Reception and competence of staff' and 'Privacy and confidentiality' subscales. In the comparison of the samples studied, greater scores were observed in general satisfaction and in factors in the medical residency care model than in the attending psychiatrist model. There were no significant differences in terms of family member satisfaction in relation to sociodemographic variables.; Conclusion: Family member satisfaction was high. The need for improvement in aspects related to the infrastructure of services was evident. This paper underlines the importance of continuous and regular evaluations of the services provided, focusing on the satisfaction of users and family members in order to better understand the factors that contribute towards the quality of care provided.

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The consensual universe of family caregivers and their standing in the care services: a social representation study

Objective: The study's aim has been to analyze the relatives' representations of patients under palliative care. Methods: It is a descriptive research with a qualitative approach, which is based on the Serge Moscovici's Social Representation Theory. Results: The research's results showed that death is described as a final physiological stage, in other words, a technically well-ordered process of nature and the only certainty that we have in life. Moreover, death can be understood as an incomprehensive mystery, an unacceptable absurd or can be treated as a taboo or a social representation of a personal universe. Conclusion: Although a patient can be cured through standard treatment, he needs either special or palliative care.

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Caregivers satisfaction with intensive care unit services in tertiary care hospital

Background: Caregivers play a vital role in intensive care unit (ICU) because critically ill patients cannot make their own decisions due to their illness. Measuring family satisfaction on quality of ICU care is essential. Hence, the current paper aimed to measure the family caregiver satisfaction in ICU care in tertiary care hospital. Methods: The study adopted descriptive research design conducted from July 2016 to January 2017 at ICU in Emergency and Trauma Care center. A total number of 60 consented caregivers were recruited. An Internationally validated Family satisfaction survey questionnaire (FS) was used. Continuous variables of the data were described by mean standard deviation and categorical variables by frequency (%). Normality of the continuous variables was checked by Shapiro–Wilk test. Kruskal–Wallis test was used to compare the average FS score between the groups. Results: Results showed that caregiver age was ranged between 25 and 66 years with mean age 40 (±19). Among the caregivers, 75% were male and 25% were female of which 75% were married and remaining were unmarried. Around half of the caregivers (48.3) were educated up to primary or secondary and 26.7% had higher secondary education level. About 46.7% involved in manual laborers and 36.7% were working in the private sector. Family members had taken primary caregiving role without prior experience (81.7%) at ICU. Almost 95% of the caregivers were highly satisfied with ICU care and only 5% were not satisfied. Conclusion: Majority of caregivers are satisfied with ICU care. However, adequate measures need to be taken to ensure the complete satisfaction among caregivers at ICU.

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Exploring family members' experiences of the Assessment and Treatment Unit supporting their relative

Background Learning disability services must include the people who use them (individuals and their families/carers) in service commissioning, planning and delivery (Department of Health 2012. Transforming care: A national response to Winterbourne View Hospital. Department of Health review: Final report). One group of important stakeholders in learning disability services are the family members and carers of people with a learning disability. The aim of this study was to explore how family members experienced their involvement with one Assessment and Treatment Unit, with a view to shaping future service developments. Materials and Methods Qualitative methods were employed to explore family members' lived experiences. Four participants, all parents of service users, took part in semi-structured interviews. Interview transcripts were analysed using thematic analysis. Results Analysis elicited four master themes under which subordinate themes clustered. The master themes were as follows: “Admission as traumatic, a relief, or both,” “Negotiating a new role,” “Valued features of the unit” and “Negative experiences.”. Conclusions The findings have implications for learning disability services and future research. Findings are discussed with relevance to strengths, limitations, wider literature and policies driving learning disability services. 

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Empowerment of family caregivers of adults and elderly persons: A concept analysis

Aim This concept analysis defined and described the components of empowerment of family caregivers who care for adults and the elderly. Methods Rodgers evolutionary method of concept analysis was used. Data sources included Pub Med, CINAHL, Scopus, and Igaku Chuo Zasshi. Thirty articles published between 1995 and 2015 focusing on the empowerment of family caregivers providing care to adults and the elderly were selected. Result The analysis reveals 6 attributes, 5 antecedents, and 5 consequences. In addition, the results reveal structured aspects of family caregivers, care receivers, and other people surrounding them, and their relationships. Empowerment of adults' and elders' family caregivers may be defined as "positive control of one's mind and body, cultivating a positive attitude, proactively attempting to understand one's role as a caregiver to improve caregiving capabilities, focusing on others as well as oneself, supporting the independence of the care receiver, and creating constructive relationships with other people surrounding them." Conclusion The components of empowerment clarified in this research can be used for the measurement of and interventions aimed at improving empowerment among family caregivers. Furthermore, clarifying the definition of empowerment among family caregivers enables researchers to better distinguish empowerment from similar concepts in the future. 

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The Challenges, Emotions, Coping, and Gains of Family Caregivers Caring for Patients With Advanced Cancer in Singapore: A Qualitative Study

Background: Caring for a family member with advanced cancer at home is demanding as the ill family member is likely to have complex physical and emotional needs. There is a paucity of studies on the experience of home family caregivers of people with advanced cancer in the Asian region. Objective: The aim of this study was to describe the experiences of family caregivers caring for a person with advanced cancer at home in Singapore. Methods: This was a qualitative study; data were collected by semistructured interviews and analyzed using content analysis. A purposive sample of 19 family caregivers who were taking care of a family member with advanced cancer were recruited from home hospice care services in Singapore. Results: Most of the caregivers were female (n = 14), ranging in age from 21 to 64 years (mean, 46.4 [SD, 10.5] years). Four themes were generated from the data: (1) caregiving challenges, (2) negative emotions, (3) ways of coping, and (4) positive gains of caregiving. Conclusions: This study generated insights into the challenges, emotions, and coping of Asian family caregivers caring for patients with advanced cancer. Such understanding could help in developing appropriate intervention for caregivers to reduce their burden and stress. Implications for Practice: Caregivers require knowledge on resolving family conflicts and about communicating and enhancing closeness with the ill family member. Support from healthcare professionals is essential even if caregivers have support from family members and friends; nurses can make conscious efforts to show concern for caregivers as well as for patients.

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Protocol for a meta-integration: investigating positive aspects of caregiving in dementia

INTRODUCTION: The current work describes the protocol for a meta-integration investigating the positive aspects of providing care to someone living with dementia. We aim to understand the position of positive aspects in the caregiver experience as well as identify how positive aspects are commonly conceptualised, investigated and measured in literature. METHODS AND ANALYSIS: Meta-integration is a method of investigation that synthesises findings from meta-analysis or systematic review of quantitative studies and meta-synthesis of qualitative studies, to provide a coherent and holistic account of a phenomenon. As a relatively new method, terminology and methodological approaches are varied. The current work describes the process of conducting an advanced convergent meta-integration, including protocol for systematic search, inclusion/exclusion screening phases, intramethod analysis synthesis and intermethod synthesis on quantitative, qualitative and mixed methods research pertaining to the positive aspects of providing care to someone living with dementia. ETHICS AND DISSEMINATION: There are no ethics or safety concerns about dissemination, which includes plans for a conference presentation and publication. 

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The family caregiver experience – examining the positive and negative aspects of compassion satisfaction and compassion fatigue as caregiving outcomes

Objectives: Caregiving results in both positive and negative outcomes for caregivers. The purpose of this study was to examine compassion fatigue and compassion satisfaction in family caregivers. Methods: Using a cross sectional descriptive survey design with a convenience sample, 168 family caregivers of individuals with chronic illness completed a web-based survey. Measures included a demographic questionnaire, Caregiver Burden Interview, Brief COPE inventory and Professional Quality of Life (ProQOL). Results: The majority of participants (71%) reported high levels of caregiver burden, moderate to low levels of the compassion fatigue concepts of burnout (59.5%) and secondary traumatic stress (STS) (50%), and moderate levels of compassion satisfaction (82.7%). Regression analyses showed that caregiver burden, time caregiving, coping, social support, and caregiving demands explained a total variance of 57.1%, F(11,119) = 14.398, p < .00 in burnout and a total variance of 56%, F(11, 119) = 13.64, p < .00 in STS. Specifically, behavioural disengagement is a predicator that may indicate early compassion fatigue. Conclusion: Findings suggest that despite high caregiver burden and moderate compassion fatigue, family caregivers are able to provide care and find satisfaction in the role. This study supports the use of compassion fatigue and compassion satisfaction as alternative or additional outcomes to consider in future research.

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Subjective wellbeing amongst informal caregivers of people with wounds: A cross-sectional survey

Objective: The present study investigated subjective wellbeing amongst informal caregivers of people with wounds. Although under-investigated in the wound care literature, prior research indicates that informal caregiving results in a series of poorer outcomes for the caregiver. Methods: A convenience sample of 57 caregivers (16 male, 41 female, 19-84 years old), was recruited from public outpatient facilities. Participants completed measures of caregiving satisfaction, and subjective wellbeing, in addition to characteristics about themselves and the care provided. Results: The informal caregivers of people with wounds scored significantly lower on a measure of subjective wellbeing than the Australian population to a large effect (d = 1.11). Negative associations were identified between sleep and subjective wellbeing, while positive associations were found between caregiving satisfaction, and relationship quality with subjective wellbeing. Discussion: Caregivers displayed lower subjective wellbeing than the general population. Subjective wellbeing was related to sleep, satisfaction, and relationship quality. Future research should compare outcomes of the caregivers of people with different forms of wounds, and should determine if correlating stressors and mediators are causal to wellbeing.

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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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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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Older Adult Spouses with Multiple Chronic Conditions: Challenges, Rewards, and Coping Strategies

There is a paucity of research exploring how spouses to older adults with multiple chronic conditions make meaning of their caregiving experience. For this study, we asked: What is the experience of spousal caregivers to persons with multiple chronic conditions? We applied Thorne's interpretive description approach, interviewing 18 spouses who provided a rich description of their caregiving experience; interviews were transcribed verbatim and thematically analysed. Themes were categorized according to challenges encountered, rewards gleaned, and sustaining strategies employed by participants in caregiving to their spouse with multiple chronic conditions. Unique findings relate to the challenges inherent in decision-making within the context of multiple chronic conditions. This article begins to address the gap in the literature regarding the caregiving experience within the context of multiple chronic conditions.

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Exploring Informal Caregivers’ Views on Their Perceived Burden

The problem of overburdening is increasing among informal caregivers. Some attention has been paid to relationship factors, positive effects of caregiving, and coping strategies in relation to caregivers’ perceived burdens, as these factors might make valuable contributions. The aim of this study was to thoroughly explore the views, experiences, and interpretations of informal caregivers with regard to these factors, who lived in the southernmost part of the Netherlands. In this qualitative case study design, 26 informal caregivers were interviewed using a semistructured questionnaire. The respondents indicated that having a good relationship with the care recipient, experiencing positive effects of providing care, and using coping strategies reduced their burden. In the future, longitudinal research is warranted to determine the actual contribution of these factors.

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The roles of unmet needs and formal support in the caregiving satisfaction and caregiving burden of family caregivers for persons with dementia

Background: A growing number of studies are emphasizing the importance of positive and negative appraisals of caregiving and the utilization of social resources to buffer the negative effects of caring for persons with dementia. By assessing the roles of unmet needs and formal support, this study tested a hypothesized model for Korean family caregivers’ satisfaction and burden in providing care for persons with dementia. Methods: The stress process model and a two-factor model were used as the conceptual framework for this study. Data for 320 family caregivers from a large cross-sectional survey, the Seoul Dementia Management study, were analyzed using structural equation modeling. In the hypothesized model, the exogenous variables were patient symptoms, including cognitive impairment, behavioral problems, and dependency on others to help with activities of daily living and with instrumental activities of daily living. The endogenous variables were the caregiver's perception of the unmet needs of the patient, formal support, caregiving satisfaction, and caregiving burden. Results: The adjusted model explained the mediating effect of unmet needs on the relationship between patient symptoms or formal support and caregiving satisfaction. Formal support also had a mediating effect on the relationship between patient symptoms and unmet needs. Patient symptoms and caregiving satisfaction had a significant direct effect on caregiving burden. Conclusion: The level of unmet needs of persons with dementia and their family caregivers must be considered in the development of support programs focused on improving caregiving satisfaction.

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Communication training interventions for family and professional carers of people living with dementia: a systematic review of effectiveness, acceptability and conceptual basis

Objectives: To update previous reviews and provide a more detailed overview of the effectiveness, acceptability and conceptual basis of communication training-interventions for carers of people living with dementia. Method: We searched CINAHL Plus, MEDLINE and PsycINFO using a specific search and extraction protocol, and PRISMA guidelines. Two authors conducted searches and extracted studies that reported effectiveness, efficacy or acceptability data regarding a communication training-intervention for carers of people living with dementia. Risk of bias was assessed using the Cochrane Collaboration guidelines. Quality of qualitative studies was also systematically assessed. Results: Searches identified 450 studies (after de-duplication). Thirty-eight studies were identified for inclusion in the review. Twenty-two studies focused on professional carers; 16 studies focused mainly on family carers. Training-interventions were found to improve communication and knowledge. Overall training-interventions were not found to significantly improve behaviour that challenges and caregiver burden. Acceptability levels were high overall, but satisfaction ratings were found to be higher for family carers than professional carers. Although many interventions were not supported by a clear conceptual framework, person-centred care was the most common framework described. Conclusion: This review indicated that training-interventions were effective in improving carer knowledge and communication skills. Effective interventions involved active participation by carers and were generally skills based (including practicing skills and discussion). However, improvements to quality of life and psychological wellbeing of carers and people living with dementia may require more targeted interventions.

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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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"Something that happens at home and stays at home": An exploration of the lived experience of young carers in Western Australia

There are approximately 350,000 young carers in Australia, yet their experience is not well understood. Young carers face adversities and disenfranchisement by being a young person in a caring role, and the role can affect other areas of their lives. We explored the lived experiences of young carers, aged 14-25 years (N = 13), from Western Australia through in-depth semi-structured interviews. A phenomenological approach was adopted. A thematic analysis of the transcribed interview data revealed four key themes. "Lessons from the experience" articulates the perceived benefits of the role and the themes: "navigating competing demands," "desire for normalcy" and "lost in the system" capture the struggles and complexities associated with being a young carer. Although there are challenges to being a young carer, it is something that young carers report can be beneficial and something that is done for those they love.

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Trajectories of positive aspects of caregiving among family caregivers of stroke-survivors: the differential impact of stroke-survivor disability

Objective To delineate positive aspects of caregiving trajectories among family caregivers of stroke-survivors and determine the impact of stroke-survivor disability, a time-varying factor, on the delineated trajectories. Methods In a longitudinal study, family caregivers of 173 stroke-survivors in Singapore were administered the Positive Aspects of Caregiving scale (PAC scale) thrice (baseline/3 months/6 months). Group-based trajectory modeling delineated positive aspects of caregiving trajectories and identified the impact of stroke-survivor disability on the trajectories. Results Two distinct positive aspects of caregiving trajectories, Persistently Low and Persistently High were delineated. Increase in stroke-survivor disability was associated with a significant downward shift (reduction in positive aspects of caregiving) of the Persistently Low trajectory and a significant upward shift (increase in positive aspects of caregiving) of the Persistently High trajectory. Older caregivers were more likely to follow the Persistently High trajectory. Conclusions Care professionals should be mindful of the heterogeneity in the longitudinal pattern of positive feelings resulting from care provision among family caregivers of stroke-survivors, and the differential impact of stroke-survivor disability on the pattern of positive feelings. Younger caregivers as well as family caregivers who have low positive feelings at the start of their caregiver journey and experience worsening functional disability of their care recipient (stroke-survivor) require greater attention and support.

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Factors moderating the mutual impact of benefit finding between Chinese patients with cancer and their family caregivers: A cross‐sectional study

Objective With growing recognitions of the significance of benefit finding (BF) in cancer practice, research has increased to explore factors that may influence BF in the cancer context. Few studies have focused explicitly on factors influencing BF from the dyadic perspective of cancer patient (CP)‐family caregiver (FC) dyads. The objectives of the study were to examine BF relationship between CPs and FCs and to investigate factors that may modify the BF relationships between CPs and FCs. Methods Participants consisted of 772 dyads of CPs and FCs. Three types of variables were collected as potential modifying factors, including CP‐related variables, FC‐related variables, and psychological‐related variables. Descriptive statistics, T test, Pearson correlations, and subgroup analysis were applied to conduct the data analysis. Results Cancer patients and FCs experienced similar moderate to high BF ranging from 65% to 81%, with the exception of acceptance, in that CPs had higher levels of acceptance than did FCs (P < .05). Various factors modifying the BF relationships between CPs and FCs were identified, including dyads' gender, marital status, education level, employment status, level of being informed about the disease, and cancer type and treatment, anxiety, depression, and self‐efficacy. Conclusions Study findings call attention to the BF, as well as related factors, from the dyadic perspective of CP‐FC dyads. Health care professionals need to include FCs of the CPs in their care and provide them with support, to encourage the CP‐FC dyads to share their experience and improve BF together, and to develop a dyadic‐based intervention program to help enhancing dyads BF.

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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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Benefits and burdens: family caregivers' experiences of assistive technology (AT) in everyday life with persons with young-onset dementia (YOD)

Background: People with dementia and their family caregivers may benefit from assistive technology (AT), but knowledge is scarce about family carers’ (FC) experiences and involvement in the use of AT in everyday life. Aim: To examine the FC roles and experiences with AT as means of supporting people with young onset-dementia (YOD). Method: Qualitative interview study with follow-up design. Repeated semi-structured interviews were conducted with 13 FC of people with YOD, participating in an ongoing intervention study investigating the families’ use and experiences of AT in everyday life. Results: Six main themes emerged: (1) timely information about AT; (2) waiting times; (3) AT incorporated into everyday living; (4) AT experienced as a relief and burden; (5) appraisal of AT qualities and (6) the committed caregiver. Conclusions: The study found benefits for the FC, especially with simply designed AT, but also several barriers for successful use. A committed caregiver is vital throughout the process. Users will need professional advice and support, and occupational therapists may have a significant role in the process. Interventions implementing AT must be based on analysis of the needs of the person with YOD and the carers: their capabilities, preferences, embodied habits, and coping strategies.

Implications for Rehabilitation

  • Committed family carers (FC) play an important, often decisive, role in providing support for the person with young-onset dementia (YOD, onset <65 years) to use and benefit from the AT.
  • The simpler the AT, the better. The AT should be introduced at “the right time”, before the cognitive and adaptive reduction is too great. The “window” for implementation may be short.
  • AT has potential to ease caregiving and give relief for FC. However, many barriers, difficulties and problems must be attended to.
  • A system for individualized support over time is necessary for implementing AT for this group.
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Positive emotions in caring for a spouse: a literature review

This article aimed at identifying the positive emotions connected to spouse caregiving and the advantages for spouse carers. Theoretically, the article is based on the concept of emotion and the assumptions of positive psychology. Data search is conducted via electronic literature databases and the analysis method is partly theory‐driven and partly inductive content classification. Our analyses discover and clarify the concepts associated with positive emotions in caring, such as the gains of caregiving, benefit‐finding, finding meaning, personal growth, post‐traumatic growth and resilience. We also utilise a conceptual framework to describe positive emotions in caregiving, and the identified advantages of positive emotions in spouse caregiving include distress buffering, mediation in coping with stress, increased quality of life and well‐being, and finding a sense of purpose. Finally, spouse care is seen in this article as a challenging life situation which at best can support personal growth, if the processing of both positive and negative emotions is included in daily life. Hence, the service and support system should be developed further by utilising the findings of positive psychology as well as studies of personal growth.

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In sickness and in health: The strains and gains of caring for a chronically ill or disabled spouse

Objectives To examine the subjective experiences of spousal carers, focusing on positive, negative, and relational aspects of this role. Methods Mixed-methods exploratory study involving questionnaires (N equals 40) and in-depth interviews (N equals 8) with spousal carers in the southwest of England. Results Participants used a combination of negative and positive terms to describe their experiences, with the cared-for spouse's mental acuity, behavior towards the carer, and amount of care required, impacting on carers' subjective experience. Women were more likely to report neglecting their own health because of being a carer (p equals 0.02). The marital relationship itself was highly significant, and many carers took special measures to maintain and develop their marital bonds. Carers adapted to their roles in various ways, with those finding acceptance of their situation and accessing support appearing to cope best with the demands of the role. Discussion This study, though based on a small and geographically restricted sample, offers insight into the positive, negative, and relational experiences of spousal carers. Support that encourages carers to engage in health-promoting activities, and ideally provides opportunities for both partners to be involved in such activities together, may be particularly beneficial. 

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Exploring partners' perspectives on participation in heart failure home care: a mixed-method design

Aim. To describe the partners' perspectives on participation in the care for patients with heart failure receiving home care. Background. Partners are often involved in care of patients with heart failure and have an important role in improving patients' well-being and self-care. Partners have described both negative and positive experiences of involvement, but knowledge of how partners of patients with heart failure view participation in care when the patient receives home care is lacking. Design. A convergent parallel mixed-method design was used, including data from interviews and questionnaires. Methods. A purposeful sample of 15 partners was used. Data collection lasted between February 2010 - December 2011. Interviews were analysed with content analysis and data from questionnaires (participation, caregiving, health-related quality of life, depressive symptoms) were analysed statistically. Finally, results were merged, interpreted and labelled as comparable and convergent or as being inconsistent. Results. Partners were satisfied with most aspects of participation, information and contact. Qualitative findings revealed four different aspects of participation: adapting to the caring needs and illness trajectory, coping with caregiving demands, interacting with healthcare providers and need for knowledge to comprehend the health situation. Results showed confirmatory results that were convergent and expanded knowledge that gave a broader understanding of partner participation in this context. Conclusion. The results revealed different levels of partner participation. Heart failure home care included good opportunities for both participation and contact during home visits, necessary to meet partners' ongoing need for information to comprehend the situation. 

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Changes in Families' Caregiving Experiences through Involvement as Participants then Facilitators in a Family Peer-Education Program for Mental Disorders in Japan

A family peer-education program for mental disorders was developed in Japan, similar to existing programs in the United States and Hong Kong. Families that serve as facilitators in such programs may enhance their caregiving processes and, thereby, their well-being. This study's aim was to describe how families' caregiving experiences change, beginning with the onset of a family member's mental illness, through their involvement in a family group or peer-education program as participants then facilitators. Thus, this study was conducted in a family peer-education program for mental disorders in Japan. Group interviews were conducted with 27 facilitators from seven program sites about their experiences before, during, and after becoming facilitators. Interview data were coded and categorized into five stages of caregiving processes: (1) withdrawing and suppressing negative experiences with difficulty and regret (2) finding comfort through being listened to about negative experiences (3) supporting participants' sharing as facilitators (4) understanding and affirming oneself through repeated sharing of experiences and (5) finding value and social roles in one's experiences. The third, fourth, and fifth stages were experienced by the facilitators. The value that the facilitators placed on their caregiving experiences changed from negative to positive, which participants regarded as helpful and supportive. We conclude that serving as facilitators may improve families' caregiving processes.

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A systematic review on the factors associated with positive experiences in carers of someone with cancer

The aim of this review was to identify the factors associated with positive experiences in non‐professional carers of someone with a cancer diagnosis. A systematic search of the following electronic databases was undertaken: Cochrane Library, CINAHL, PsycINFO, SocINDEX and Medline. Literature was searched using terms relating to cancer, caring and positive experiences. Additional records were identified through a manual search of relevant reference lists. The search included studies published in English from 1990 to June 2015. Two raters were involved in data extraction, quality appraisal, coding, synthesis and analysis. Evolutionary concept analysis was used as a guiding framework in order to focus on attributes associated with positive experiences. Fifty‐two articles were included in this review. Analysis identified four overarching attributes: “gender,” “personal resources,” “finding meaning” and “social context.” Despite the challenges associated with caring, this combination of internal and external factors enabled some carers to report positive experiences related to caring. This knowledge may be clinically helpful when designing supportive interventions. Strengths and limitations of these claims are discussed.

Systematic review registration number: CRD42014014129.

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Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients

Background: This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey. Methods: During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient’s admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions. Results: FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for “bodily pain”, FCs’ quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80–83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3). Conclusions: This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs’ satisfaction with SIPC seemed to be high. A current multicenter study evaluates these findings longitudinally in a large cohort of FCs.

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Validity and Reliability of the Positive Aspects of Caregiving (PAC) Scale and Development of Its Shorter Version (S-PAC) Among Family Caregivers of Older Adults

Purpose of the Study: To (a) assess the validity and reliability of the 9-item Positive Aspects of Caregiving (PAC) scale among a national sample of caregivers for older adults with functional limitations, (b) develop a shorter version (short-PAC [S-PAC] scale) and assess its psychometric properties, and (c) investigate both scales’ measurement equivalence/invariance (ME/I) across language of administration (Chinese/English/Malay). Design and Methods: Scale/item measurement property assessment, confirmatory factor analysis (CFA), testing the “original” 2-factor model (6 items: first factor; 3 items: second factor), and exploratory FA (EFA) of the 9-item PAC scale was done. Consequently, alternate CFA models were tested. The S-PAC was developed and subjected to CFA. For both scales, convergent (correlation with caregiver esteem) and divergent (correlation with caregiver depressive symptoms) validity, and language ME/I was assessed. Results: For the 9-item PAC scale, the “original” 2-factor CFA model had a poor fit; its EFA and scale/item measurement properties supported a single factor. Among alternate CFA models, a bi-factor model (all nine items: first factor [overall PAC]; six items: second factor [self-affirmation]; three items: third factor [outlook-on-life]) had the best fit. The bi-factor CFA model also had a good fit for the S-PAC scale, developed after eliminating 2 items from the 9-item PAC scale. Both scales demonstrated convergent and divergent validity, and partial ME/I across language of administration. Implications: Both the 9-item PAC and 7-item S-PAC scales can be used to assess positive feelings resulting from care provision among family caregivers of older adults with functional limitations.

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The caregiver burden in male romantic partners of women with non-metastatic breast cancer: The protective role of couple satisfaction

We examined the evolution of the subjective burden of romantic partners caring for women with non-metastatic breast cancer and investigated the moderating role of couple satisfaction on caring stress. Forty-seven partners filled out questionnaires 3 and 12 months after surgery. Using a stress process model, we examined caring stressors and moderating factors (couple satisfaction, coping and social support) as predictors of subjective burden. Results showed that subjective burden decreases over time and that the couple satisfaction largely explains it above and beyond other influential variables. Partners dissatisfied with their couple relationship are especially vulnerable to the stress of caregiving.

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Is socially integrated community day care for people with dementia associated with higher user satisfaction and a higher job satisfaction of staff compared to nursing home-based day care?

Objectives: To investigate whether community-based (CO) day care with carer support according to the proven effective Meeting Centres Support Programme model is associated with higher satisfaction of people with dementia (PwD) and their informal caregivers (CG) and with a higher job satisfaction among care staff compared to traditional nursing home-based (NH) day care.  Method: Data were collected in 11 NH day care centres and 11 CO day care centres. User satisfaction of PwD and CG was evaluated in the 11 NH day care centres ( n PwD = 41, n CG = 39) and 11 CO day care centres ( n PwD = 28, n CG = 36) with a survey after six months of participation. Job satisfaction was measured only in the six NH day care centres that recently transformed to CO day care, with two standard questionnaires before ( n STAFF = 35), and six months after the transition ( n STAFF = 35). Results: PwD were more positive about the communication and listening skills of staff and the atmosphere and activities at the CO day care centre. Also, CG valued the communication with, and expertise of, staff in CO day care higher, and were more satisfied with the received emotional, social and practical support. After the transition, satisfaction of staff with the work pace increased, but satisfaction with learning opportunities decreased. Conclusion: PwD and CG were more satisfied about the communication with the staff and the received support in CO day care than in NH day care. Overall job satisfaction was not higher, except satisfaction about work pace.

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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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Caregiving and Perceived Generativity: A Positive and Protective Aspect of Providing Care?

Objectives : Although a sizable body of research supports negative psychological consequences of caregiving, less is known about potential psychological benefits. This study aimed to examine whether caregiving was associated with enhanced generativity, or feeling like one makes important contributions to others. An additional aim was to examine the buffering potential of perceived generativity on adverse health outcomes associated with caregiving. Methods : Analyses utilized a subsample of participants (n = 3,815, ages 30–84 years) from the second wave of the National Survey of Midlife Development in the United States (MIDUS). Results : Regression analyses adjusting for sociodemographic factors indicated greater negative affect and depression (p .001) and lower levels of positive affect (p <.01), but higher self-perceptions of generativity (p < .001), in caregivers compared with non-caregivers. This association remained after adjusting for varying caregiving intensities and negative psychological outcomes. Additionally, generativity interacted with depression and negative affect (p values < .05) to lessen the likelihood of health-related cutbacks in work/household productivity among caregivers. Conclusions : Results suggest that greater feelings of generativity may be a positive aspect of caregiving that might help mitigate some of the adverse health and well-being consequences of care. Clinical Implications : Self-perceptions of generativity may help alleviate caregiver burden and explain why some caregivers fare better than others.

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A longitudinal view of factors that influence the emotional well-being of family caregivers to individuals with heart failure

Objectives: Caring for community-residing patients with heart failure can affect caregivers’ emotional wellbeing. However, few studies have examined caregivers’ well-being longitudinally, or identified factors associated with positive and negative outcomes. The objective of this longitudinal cohort study was to examine changes in caregivers’ well-being over time, and to identify patient and caregiver factors associated with positive and negative outcomes. Method: Fifty caregiver/heart failure patient dyads were recruited from an acute care facility and followed in the community. All participants completed surveys at hospital admission and 3, 6 and 12 months later. Caregivers completed assessments of depression symptoms and positive affect and standardized measures to capture assistance provided, mastery, personal gain, social support, participation restriction, and patients’ behavioral and psychological symptoms. From patients, we collected demographic characteristics and health-related quality of life. Individual Growth Curve modelling was used to analyze the data. Results: Caregivers’ negative and positive emotions remained stable over time. Depression symptoms were associated with higher participation restriction in caregivers. Positive affect was associated with more personal gain and more social support. Patients’ health-related quality of life and their behavioral and psychological symptoms were not significantly associated with caregivers’ emotional outcomes. Conclusion: Interventions should be offered based on caregivers’ needs rather than patients’ health outcomes, and should focus on fostering caregivers’ feelings of personal gain, assisting them with securing social support, and engaging in valued activities.

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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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The SICAM-trial: evaluating the effect of spouses' involvement through case management in older patients' fast-track programmes during and after total hip replacement

Aim: The aim of this study was to evaluate the effect of spouses' involvement in older patients' care trajectories, using case management as intervention in total hip replacement through fast‐track programmes.

Background: Patients need their spouses to be involved in their fast‐track programmes and this involvement is often associated with improvements in patient outcomes. However, the effect of spouses' involvement in older patients' fast‐track programmes has not yet been investigated.

Design: A two‐group quasi‐experimental design with pre‐test and repeated post‐test measures was conducted in an orthopaedic ward of a Danish Regional Hospital from February 2014–June 2015. Spouse–patient dyads were initially recruited for the control group (n = 14), receiving usual care; dyads for the intervention group (n = 15) were recruited afterwards, receiving case management intervention elements before, during and after admission.

Methods: Face‐to‐face interviews on questionnaires were conducted with spouses and patients at baseline, 2 weeks and 3 months after discharge, measuring spouses' caregiver satisfaction, difficulties and level of anxiety and patients' functional and nutritional status, pain and level of depression.

Results: The results showed that there were no differences between the groups with regard to any of the outcome measures. However, statistically significant improvements were found in the patient groups on functional status, pain and depression and in the groups of spouses on caregiver satisfaction.

Conclusion: The case management intervention seemed to have an effect in patient and spousal groups; however, this improvement could also have been caused by the effect of fast‐track treatment.

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The Burden and Benefits of Caregiving: A Latent Class Analysis

Background and Objectives: Informal caregiving to older adults is a key part of the U.S. long-term care system. Caregivers' experiences consist of burden and benefits, but traditional analytic approaches typically consider dimensions independently, or cannot account for burden and benefit levels and combinations that co-occur. This study explores how benefits and burden simultaneously shape experiences of caregiving to older adults, and factors associated with experience types.; Research Design and Methods: 2015 National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC) data were linked to obtain reports from caregivers and recipients. Latent class and regression analysis were conducted on a nationally representative sample of U.S. informal caregivers to older persons.; Results: Five distinguishable caregiving experiences types and their population prevalence were identified. Subjective burden and benefits level and combination uniquely characterize each group. Primary stressors (recipient depression, medical diagnoses), primary appraisal (activities of daily living, instrumental activities of daily living, medical task assistance, hours caregiving), and background/contextual factors (caregiver age, race, relationship to recipient, mental health, coresidence, long-term caregiving) are associated with experience types.; Discussion and Implications: Findings highlight caregivers' experience multiplicity and ambivalence, and identify groups that may benefit most from support services. In cases where it is not possible to reduce burden, assistance programs may focus on increasing the benefits perceptions.

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Caregiver Self-Esteem as a Predictor of Patient Relationship Satisfaction: A Longitudinal Study

Objective: Longitudinal assessment of patient-caregiver relationships will determine whether caregiver self-esteem determines patient relationship satisfaction at end of life.; Background: Research on close relationships and caregiving supports the idea that informal caregivers' self-esteem may influence their relationships with their terminally ill loved ones. However, this connection has not yet been investigated longitudinally, nor has it been applied specifically to care recipients' relationship satisfaction.; Methods: A sample of 24 caregivers and 24 patients in a hospice home care program were recruited. Multiple patient and caregiver interviews were used to conduct a longitudinal study to measure fluctuations in patient health, changes in patient and caregiver relationship satisfaction, and self-esteem over a three-month period.; Results: An interaction between caregiver self-esteem and patient relationship satisfaction demonstrated the role that self-esteem plays between caregivers and patients enrolled in hospice care. Specifically, for patients with caregivers with low self-esteem, patient relationship satisfaction significantly decreased as the patient's physical health decreased, whereas for patients whose caregivers had high self-esteem, patient relationship satisfaction marginally increased during poorer physical health.; Discussion: High self-esteem may allow caregivers to overcome feelings of burden and maladaptive anticipatory grief to remain satisfied in their relationship with the patient. Caregiver self-esteem appears to play a role in fostering patient relationship satisfaction at the end of life.

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The relation between personality, informal caregiving, life satisfaction and health-related quality of life: evidence of a longitudinal study

Purpose: Personality characteristics of the caregiver might play a role in the relation between informal caregiving and health-related quality of life as well as life satisfaction. However, a limited body of research has examined this relation. This study aimed to examine the role personality characteristics of the caregiver might play in the relation between informal caregiving and well-being outcomes using a longitudinal approach.; Methods: Data were derived from the large Panel 'Labour Market and Social Security.' This is an annual household survey, which is conducted by order of the Institute for Employment Research covering persons and households registered as residents of Germany. The SF-12 was used to capture health-related quality of life (covering physical and mental health). A short version of the Big Five Inventory (BFI-K) was used to quantify personality factors. Life satisfaction was measured by a single-item measure. Concentrating on these factors, we used data from the third (2008/2009), sixth (2012), and ninth wave (2015). 34,548 observations were used in fixed effects regressions.; Results: Adjusting for various potential confounders, linear fixed effects regressions showed that the onset of informal caregiving reduced life satisfaction (β = - .14, p < .01), but not physical and mental health. The relation between informal caregiving and life satisfaction was significantly moderated by agreeableness (p < .01).; Conclusions: Findings of the present study emphasized that agreeableness moderates the relationship between informal caregiving and life satisfaction. Measuring personality characteristics of the informal caregiver is important for tailoring interventional strategies in order to increase the benefit of these programs.

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Shared decision-making and providing information among newly diagnosed patients with hematological malignancies and their informal caregivers: Not "one-size-fits-all"

Objective: To optimize personalized medicine for patients with hematological malignancies (HM), we find that knowledge on patient preferences with regard to information provision and shared decision-making (SDM) is of the utmost importance. The aim of this study was to investigate the SDM preference and the satisfaction with and need for information among newly diagnosed HM patients and their informal caregivers, in relation to sociodemographic and clinical factors, cognitive coping style, and health related quality of life.; Methods: Newly diagnosed patients and their caregivers were asked to complete the Hematology Information Needs Questionnaire, the Information Satisfaction Questionnaire, and the Threatening Medical Situations Inventory. Medical records were consulted to retrieve sociodemographic and clinical factors and comorbidity by means of the ACE-27.; Results: Questionnaires were completed by 138 patients and 95 caregivers. Shared decision-making was preferred by the majority of patients (75%) and caregivers (88%), especially patients treated with curative intent (OR = 2.7, P = .041), and patients (OR = 1.2, P < .001) and caregivers (OR = 1.2, P = .001) with a higher monitoring cognitive coping style (MCCS). Among patients, total need for information was related to MCCS (P = .012), and need for specific information was related to MCCS and several clinical factors. Importantly, dissatisfaction with the information they received was reported by a third of the patients and caregivers, especially patients who wanted SDM (χ2  = 7.3, P = .007), and patients with a higher MCCS (OR = 0.94, P = .038).; Conclusion: The majority of HM patients want to be involved in SDM, but the received information is not sufficient. Patient-tailored information is urgently needed, to improve SDM.

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Psychological well-being over time among informal caregivers caring for persons with dementia living at home

Objectives: To investigate informal caregivers' psychological well-being and predicted increase in psychological well-being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors.; Method: A cohort study at baseline and 3 months' follow-up in eight European countries. Caregivers included (n = 1223) were caring for PwDs aged ≥ 65 years at home. Data on caregivers, PwDs and FC were collected using standardized instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed.; Results: Factors associated with caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD, few neuropsychiatric symptoms and depressive symptoms for the PwD. At follow-up, caregivers with increased psychological well-being experienced of quality of care (QoC) higher and were more often using dementia specific service. Predicting factors for caregivers' increased psychological well-being were less caregiver burden, positive experience of caregiving, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiatric symptoms. Furthermore, higher QoC predicted increased caregivers' psychological well-being.; Conclusion: Informal caregiving for PwDs living at home is a complex task. Our study shows that caregivers' psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neuropsychiatric symptoms that might affect caregivers' psychological well-being, and provide proper care and treatment for caregivers and PwDs.

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Home as a place of caring and wellbeing? A qualitative study of informal carers and caring networks lived experiences of providing in-home end-of-life care

Although the burden of caring is well described, the value of home as a potential place of wellbeing and support for informal caring networks when providing end-of-life care is not well recognised. Interviews and focus groups with 127 primary carers and members of informal care networks revealed their collaborative stories about caring for a dying person at home. Four themes emerged from the data: home as a place of comfort and belonging; places of social connection and collaborative caring; places of connection to nature and the non-human; places of achievement and triumph. When support is available, nurturing carer wellbeing may be best achieved at home.

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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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Existing But Not Living: Experiences of Long-Term Caregivers of Individuals With Unipolar Depression

The shift in care from long-term hospitalization of individuals with mental illness to the community places a greater onus of responsibility on informal caregivers. The purpose of the current study was to explore the lived experiences of long-term caregivers of individuals with unipolar depression. A qualitative phenomenological methodology was used and two sets of semi-structured interviews were conducted with nine informal caregivers. Data were transcribed following Giorgi's phenomenological method. The following three themes were identified: Flooded by Emotions, Personal Growth and Satisfaction, and Psychosocial Effects and Challenges. Caregivers described adapting by adjusting their behavior to avoid conflict with care recipients. These adjustments had a detrimental effect on their well-being, where they described that they were "existing but not living." These findings highlight the need for ongoing support, which should be tailored to the unique needs and concerns of individuals who are providing long-term care to individuals with depression.

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Unravelling positive aspects of caregiving in dementia: An integrative review of research literature

Background: Family caregiving is the crucial informal care resource to lessen the burdens associated with dementia. Research in this field has focused on reducing the caregiver's burden, but little attention has been given to promoting the positive aspects of caregiving. Objectives: To conduct a systematic critical review of research on the nature of positive aspects of caregiving, and the factors predicting this phenomenon among family caregivers of dementia patients, with the ultimate purpose of gaining insights to explain how and why it emerges. Review methods: A systematic search of the literature was undertaken in the databases OvidMedline, CINAHL, PsycINFO, Web of Science and Scopus, using the keywords ‘care* AND Alzheimer OR dementia AND ‘positive aspect' OR ‘positive experience' OR ‘positive perceptions' OR reward OR gain OR ‘satisfaction with care*' OR ‘care* satisfaction' OR benefit OR uplift OR meaning OR enjoyment OR pleasure OR growth OR hope OR gratification. The Critical Appraisal Skills Programme checklists for qualitative and cohort studies were used to evaluate data quality. Narrative data synthesis was undertaken using the five-stage Whittermore and Knafl method. Results: A total of 3862 articles were identified, of which 41 were included in this review. The key findings are that positive aspects of caregiving among family caregivers of dementia patients form a multi-dimensional construct which covers four key domains: a sense of personal accomplishment and gratification, feelings of mutuality in a dyadic relationship, an increase of family cohesion and functionality, and a sense of personal growth and purpose in life. By integrating the findings about the nature and conditions predicting positive aspects of caregiving, the presence of three conditions was identified as promoting the emergence of such qualities i) personal and social affirmation of role fulfilment, ii) effective cognitive emotional regulation and iii) contexts which favour finding meaning in the caregiving process. Conclusion: The findings of this review provide insight into catalysing the paradigm shift from ‘reducing stress' to ‘optimising positive experience' in developing caregiving support services for dementia, and may guide future empirical study to explain this unique dimension of caregiving experience. 

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Moderating role of positive aspects of caregiving in the relationship between depression in persons with Alzheimer's disease and caregiver burden

Improving caregivers’ positive perception of their role may be important in reducing their subjective burden when caring for Alzheimer’s disease (AD) patients with depression. The purpose of present study was to explore the moderating role of the positive aspects of caregiving (PAC) on the subjective burden on family caregivers when managing depressive behaviors. We conducted a cross-sectional study including 200 pairs of patients with mild AD and their caregivers from three communities and two hospitals in Taiyuan, China in October 2014. The latent variable interaction model based on a two stage least squares (2SLS) regression was fitted. A significant moderating effect of the PAC was found on the relationship between depression in patients with AD and the caregiver burden they cause. Caregivers dealing with patients with low levels of depression but with high levels of the PAC had significantly lower levels of caregiver burden compared to those caregivers with the low levels of PAC. Continuously detecting the patient's mental state combined with caregivers having an optimistic attitude towards life may improve the quality of life for both patients and caregivers. 

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Informal caregiving transitions, subjective well-being and depressed mood: Findings from the English Longitudinal Study of Ageing

Objectives: To prospectively investigate the impact of transitions in informal caregiving on emotional well-being over two years in a large population study of older people. Methods: Information on provision of unpaid care in 2004/2005 and 2006/2007 was available for 6571 participants in the English Longitudinal Study of Ageing. Three well-being domains were also assessed on each occasion: life satisfaction (measured with the Satisfaction with Life Scale); quality of life (assessed with the CASP-19 scale); and depression symptoms (measured using the Centers for Epidemiologic Studies Depression Scale). Multivariable analyses of the impact on well-being of two-year caregiving transitions (caregiving entry and caregiving exit, or continued caring) were conducted separately for spousal/child carers and carers of other family/non-relatives. Results: Compared to non-caregiving, entry into spousal/child caregiving was associated with decline in quality of life (B= −1.60,p< .01) whereas entry into caregiving involving other kin relations increased life satisfaction (B= 1.02,p< .01) and lowered depression symptoms (B= −0.26,p< .05). Contrary to expectations, caregiving exit was related to increased depression in both spousal/child (B= 0.44,p< .01) and non-spousal/child (B= 0.25,p< .05) carers. Continued spousal/child caregiving was also related to decline in quality of life (B= −1.24,p< .05). Other associations were suggestive but non-significant. Conclusion:The emotional impact of different caregiving transitions in later life differs across kin relationships; notably, spousal and child carers' well-being was consistently compromised at every stage of their caregiving career over the two-year study period. 

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Australian family carer responses when a loved one receives a diagnosis of Motor Neurone Disease—“Our life has changed forever”

While the experiences of family members supporting a person with a terminal illness are well documented, less is known about the needs of carers of people with neurological diseases, in particular, Motor Neurone Disease (MND). This paper describes the qualitative data from a large Australian survey of family carers of people with MND, to ascertain their experiences of receiving the diagnosis. The aim of the study was to describe the experiences of family carers of people with MND in receiving the diagnosis in order to inform and improve ways in which the diagnosis is communicated. Anonymous postal surveys were sent to people with MND in Australia and their family carers respectively. The perceived ability/skills of neurologists was assessed using a five‐point scale from excellent to poor. Attributes of communication of bad news was measured by the SPIKES protocol. Each survey question invited further written responses. Eight hundred and sixty‐four questionnaires were posted to people with MND and their family carers, with assistance from MND associations. One hundred and ninety‐six family carers submitted responses, of which 171 (88%) were patient‐carer dyads. Analyses were conducted on 190 family carers. Five themes emerged from reading and re‐reading written responses: frustrations with the diagnosis; giving information; family carer observations of the neurologist; the setting; and what would have made the diagnosis easier? The delivery of the diagnosis is a pivotal event in the MND trajectory. Satisfaction for patients and their family carers is related to the neurologists showing empathy and responding appropriately to their emotions, exhibiting knowledge and providing longer consultations. Neurologists may benefit from education and training in communication skills to adequately respond to patients’ and families’ emotions and development of best practice protocols. 

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Measuring Family Members’ Satisfaction with End-of-Life Care in Long-Term Care: Adaptation of the CANHELP Lite Questionnaire

Rationale. Improving end-of-life care (EOLC) in long-term care (LTC) homes requires quality measurement tools that assess families’ satisfaction with care. This research adapted and pilot-tested an EOLC satisfaction measure (Canadian Health Care Evaluation Project (CANHELP) Lite Questionnaire) for use in LTC to measure families’ perceptions of the EOLC experience and to be self-administered. Methods and Results. Phase 1. A literature review identified key domains of satisfaction with EOLC in LTC, and original survey items were assessed for inclusiveness and relevance. Items were modified, and one item was added. Phase 2. The revised questionnaire was administered to 118 LTC family members and cognitive interviews were conducted. Further modifications were made including reformatting to be self-administered. Phase 3. The new instrument was pilot-tested with 134 family members. Importance ratings indicated good content and face validity. Cronbach’s alpha coefficients (range: .88–.94) indicated internal consistency. Conclusion. This research adapted and pilot-tested the CANHELP for use in LTC. This paper introduces the new, valid, internally consistent, self-administered tool (CANHELP Lite Family Caregiver LTC) that can be used to measure families’ perceptions of and satisfaction with EOLC. Future research should further validate the instrument and test its usefulness for quality improvement and care planning. 

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Physician Behavior toward Death Pronouncement in Palliative Care Units

Background: There are few studies on bereaved caregiver's perceptions of physician behavior toward death pronouncement. Although previous research indicates that most caregivers are satisfied with physician behavior toward death pronouncement at home hospices, bereaved caregiver's perceptions of death pronouncement in palliative care units (PCUs) have not been investigated. Objective: The aim was to examine bereaved caregiver's perceptions of physician behavior toward death pronouncement in PCUs. Design and Methods: This was a cross-sectional questionnaire survey of bereaved caregivers who had lost a family member in a PCU. Measures were based on a previous study to assess bereaved caregiver's evaluations of physician behavior toward death pronouncement. Results: Of 861 questionnaires sent to bereaved caregivers, 480 responses were analyzed. Overall, 86% of bereaved caregivers were satisfied with physician behavior toward death pronouncement. Logistic regression analysis revealed three predictors of caregiver satisfaction: "Polite behavior" (odds ratio [OR]: 0.12; 95% confidence intervals [CI]: 0.03-0.46; p < 0.01), "Physician introduced himself/herself to family" (OR: 0.3; 95% CI: 0.1-0.8; p = 0.02) and "Physician confirmed death automatically or routinely" (OR: 11.6; 95% CI: 4.7-28.4; p < 0.01). Caregivers whose family member's death was confirmed by the primarily responsible physician were significantly more satisfied than those whose family member's death was confirmed by an unfamiliar physician. Conclusions: Most caregivers who lost family members in PCUs were satisfied by the physician's behavior toward death pronouncement. Politeness was one of the most important factors associated with caregiver satisfaction. 

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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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‘If it weren't for me…’: perspectives of family carers of older people receiving professional care

Background: In the Scandinavian countries and elsewhere, family care is important as a complement for older people in the professional care system. Better understanding of this role could lead to better cooperation between professionals and family carers and better use of family carers as a resource in care for older people. Aim: The aim of this study was to explore experiences of the role of family carers of older people in need of services and therefore to increase our understanding of this role. Method: The study was designed as a qualitative interview study. In 2014 and 2015, we conducted semistructured interviews with a varied sample of 16 family carers of older people in both urban and rural locations in Norway. Interviews were transcribed and analysed thematically. Findings: The way the caregiving role was enacted varied greatly between the family carers in this study, but they all conveyed mixed feelings regarding their role. They saw caring for their relative both as a duty and a strain, as well as a choice and a meaningful task. One reason for their engagement was perceived deficiencies in professional care services. Family carers thus felt they made a difference to the older person's well‐being and health, and more so if this role was acknowledged by professional caregivers. Conclusions: This study suggests that in spite of or perhaps even because of feelings of obligation and strain, family care is experienced as highly meaningful. However, it seems important that family carers receive explicit appreciation from professional health or care staff. 

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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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The impact of location on satisfaction with dementia services amongst people with dementia and their informal carers: a comparative evaluation of a community-based and a clinic-based memory service

Background: The development of effective medication for the treatment of Alzheimer's disease led to an expansion in the use of memory clinics ther clinic-based services for the delivery and monitoring of the drugs. In contrast, there is an increased emphasis on providing home and community based service delivery for a range of illnesses including dementia.

Methods: This paper reports the findings of an evaluation study comparing a clinic-based and a community service. A convenience sample of 10 service users and carer dyads took part in in-depth qualitative interviews. Service users were diagnosed with mild to moderate dementia of Alzheimer's type. Interviews were recorded, transcribed and subsequently analyzed using template analysis.

Results: Service users and carers were satisfied with both services, with determinants of satisfaction differing between the two services. Issues relating to the location and spatial design of services, comfort, familiarity, communication with staff, and ease of use are highlighted as important determinants of satisfaction amongst service users and their carers.

Conclusion: This study has implications for person-centred care practices in service delivery and for the future design of mental health services for people with dementia.

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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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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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Patients' and carers' perceptions of factors influencing recovery after cardiac surgery

Stress and anxiety experienced by patients following myocardial infarction are well documented. Moreover, partners feel distress when they realize that they must assume responsibility for day-to-day care once the period of hospitalization is over. However, despite the trend towards early hospital discharge and the role which carers appear to be expected to undertake during the recovery of patients who have had cardiac surgery, few studies have been undertaken with this group outside the United States of America. This omission was filled by a descriptive survey with 60 patients and carers following cardiac surgery. Data were obtained during early recovery (1 week after hospital discharge) and 6 weeks later. The results indicated that carers assumed a heavy burden once the patient had left hospital and were less satisfied with the timing of discharge than the patients. Information provided by nurses was consistently rated more highly than information provided by doctors or physiotherapists but there was scope for increasing input with both groups. High levels of satisfaction with the information provided by health professionals were associated with lower scores on the Hospital Anxiety and Depression Scale. More qualitative, in-depth studies to explore the precise needs of patients and their carers are needed to ensure that in future both groups are better prepared.

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Using cost-effectiveness analysis to compare Hospital at Home and in-patient interventions, part 1

 An economic analysis was conducted as an integral part of a comparison of the effectiveness and suitability of Hospital at Home (HaH) and in-patient interventions. The sample comprised of 109 adult primary total joint replacement patients and 21 of their coresident informal carers.

• The paper is presented in two parts. Part 1 includes the background and rationale for the study and the findings from the comparison of the effectiveness of the two interventions using multiple data collection sources.

• Data were collected using questionnaires, audit and semi-structured interviews.

• Hospital at Home was found to be significantly more effective in terms of patient satisfaction and reduced joint stiffness and as least as effective as in-patient care in relation to levels of joint pain, joint disability and incidence of postoperative complications. In addition informal carers reported 107 positive comments compared with 36 negative comments related to HaH care and all except one of the 21 carers would choose HaH again in preference to in-patient care.

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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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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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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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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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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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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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Wellbeing among people with dementia and their next of kin over a period of 3 years

Little is known about the dyadic experience over time of people with dementia and their next of kin. The aim of this study was to investigate the state of mind of people with dementia, their next of kin’s experience of burden and satisfaction, and factors associated with these experiences over a 3-year period. The sample consisted of 32 people with dementia living at home with family caregivers in the south of Sweden. Data were collected during the period 2004–2007 and consisted of patients self reports (GDS), dementia nurse assessment (MMSE, Berger and ADL) and next-of-kin assessment (patient’s state of mind and care provision). Data also consisted of next-of-kin’s self reports concerning health, burden and satisfaction. The result showed that patients’ state of mind was mainly positive at baseline but a deterioration was seen over time in the patient’s mood and cognitive functioning together with an increase in ADL-dependency and suspected depression. Dependency in personal ADL entailed a higher risk of being in a negative state of mind. For next of kin the experience of burden increased while satisfaction decreased over the 3 years. The inter-relationship between the patients’ mood and the caregiver’s satisfaction and burden seems to get stronger over time. At baseline caregiver burden was mainly related to the next of kins’ general health and to patient behaviours that were difficult to handle. During the progression of the disease caregiver satisfaction becomes increasingly related to patient state of mind and dependency. There is, however, a need for more research focusing on the specific inter-relational aspects as previous studies have mainly focused on either the situation for the person with dementia or on the caregiver.

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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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Training in communication skills for informal carers of people suffering from dementia: a cluster randomised clinical trial comparing a therapist led workshop and a booklet

This study evaluates whether a short training workshop in communication techniques is more effective than an information booklet for improving communication skills in informal carers of people suffering from dementia. 30 informal carers were allocated to the workshop sessions and 15 to the booklet. Outcome measures included awareness of communication strategies; perceived frequency of communication breakdown at home, and the associated level of distress; general stress; and consumer satisfaction. At six week follow-up, the workshop group demonstrated a significantly greater awareness of communication strategies then the booklet-only group. Both groups reported some reduction in the frequency of communication problems at home, and a reduction in the associated level of distress. Satisfaction with the workshop indicated that training was helpful but depended on the stage of illness of the partner.

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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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An investigation of family carers' needs following stroke survivors' discharge from acute hospital care in Australia

Purpose. To expand understanding of informal stroke care-giving, validated tools previously used in Hong Kong and in the UK were used with Australian stroke carers to assess their stroke-related knowledge, perceived needs, satisfaction with services received and sense of burden after stroke patients' discharge home from acute hospital care.

Methods. Record audit and telephone interviews with two cohorts of 32 carers recruited in Sydney and Brisbane 1 and 3 months post-hospital discharge, using validated scales and open questions in May–July 2006.

Results. Female carers, those with prior care-giving responsibility, and those interviewed at three compared to one month post-discharge reported greatest needs and burden from the care-giving role; needs alone significantly predicted burden. Getting information and being prepared for life after discharge were central concerns. Some felt this was accomplished, but inadequate information giving and communication mismatches were apparent.

Conclusions. Service providers need to develop partnership working with stroke families and provide a network of services and inputs that cut across conventional boundaries between health and social care, public, private and voluntary organisations, with care plans that deliver what they delineate. Stroke care-givers have common issues across countries and healthcare systems; collaborative research-based service development is advocated.

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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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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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Components of coordinated care: a new instrument to assess caregivers' and care recipients' experiences with networks of dementia care

This article reports on the development of an instrument to measure dementia patients' and their families' experiences with care provision. Using the responses of 267 care recipient/caregiver dyads, exploratory factor analysis was used to extract an underlying structure of the dyads' assessments of their experiences with dementia networks of care. The results suggested that from the perspective of the care recipient and caregiver, it is the individuals who they interact with in their care journey that define and shape the evaluation of their experiences. In the early stages of dementia, the family physician plays a central role in helping dyads understand the disease and the networks of care that are available to them; in later stages of the disease, it is the activities of the health care worker who is central to the dyad's lived experiences of the care they are receiving. The third important construct linked to the period when a care recipient and caregiver dyad was increasingly aware that dementia services may be needed and the process of assessment and placement was underway. Having information about what resources are available and how they can be accessed, and being able to complete assessments and placements in a timely fashion, was central to their assessment of care networks.

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Bringing Young Carers Out of the Shadows

The article discusses the difficulties experienced by young carers and how to develop and strengthen their caregiver skills and experience. It says that young carers are children, adolescents, and younger members of the family below the age of 25 who has become the primary caregiver of the family and takes adult responsibilities in managing the family due to parental absence. It says that due to their young age, most young carers experience psychological and physical stress in their lives, social isolation from their peers, and educational delays. However, many young carers also see positive outcomes of their role like heightened sense of self-worth, satisfaction from caregiving tasks, and belief that they are more mature.

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Experiences of hospital care reported by bereaved relatives of patients after a stroke: a retrospective survey using the VOICES questionnaire

Aim. This paper is a report of a study conducted to explore the determinants of satisfaction with health and social care services in the last 3 months and 3 days of life as reported by bereaved relatives of those who died from a stroke in an institutional setting.

Background. There is limited research about how best to meet the needs of those who die from stroke. A thorough understanding of the determinants of satisfaction with end of life care is crucial for effective service provision to increase awareness of the needs of dying patients.

Methods. During a six-month period in 2003, a population-based survey of bereaved relatives of patients after stroke was conducted using a stroke-specific version of the Views of Informal Carers Evaluation of Services postal questionnaire (183 informants, response rate 37%). The sub-sample included those informants who reported that the deceased person had died in an institutional setting (91%, = 165). The analysis was divided into two phases: univariate (Pearson chi-square test) and multivariate phase (logistic regression).

Results. Logistic regressions showed that discussing any worries about the treatment of the deceased person and feeling that the doctors and nurses knew enough about their condition were predictors of satisfaction with doctors and nurses in the last 3 months of life. Meeting the personal care needs of the deceased person, being involved in decisions and feeling that the deceased person died in the right place were predictors of satisfaction with care in the last 3 days of life.

Conclusion. End of life care needs to address the individual needs of patients who die from stroke and those close to them. This study shows that individualised end of life care increases satisfaction and, although the data reported in this paper reflect care in 2003, there is no more recent evidence that contradicts this important overall finding.

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Quality of relationships between care recipients and their primary caregivers and its effect on caregivers' burden and satisfaction in Israel

Research on the impact of quality of relationships between primary caregivers and their care recipients on burden and satisfaction with caregiving is still rare. The sample included 335 dyads of primary caregivers and care recipients who were cognitively intact. Face-to-face interviews were conducted at the respondents' homes using structured questionnaires. No significant correlation between caregiving burden and caregiving satisfaction was found. Quality of relationship was the most significant variable in explaining both caregiving burden and caregiving satisfaction, yet different sets of additional variables were found to explain each of the outcomes. Interventions should address quality of relationships in order to reduce burden and increase caregiving satisfaction.

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Evaluation of effectiveness and satisfaction outcomes of a mental health screening and referral clinical pathway for community nursing care

The study aimed to explore the effectiveness of a mental health screening and referral clinical pathway for generalist community nursing care of war veterans and war widow(er)s in Australia on outcomes of client self-reported mental health, quality of life, and client and carer satisfaction. The pathway was developed by literature review and consultation, then trialled and evaluated. Validated screening tools were embedded within the pathway to support generalist nurses' mental health decision making. Pre- and post-measures were applied. Clients on whom the pathway was trialled were invited to complete an evaluation survey questionnaire, as were their informal carers. Most clients and carers who responded to these questionnaires were highly satisfied or satisfied with care provided through application of the pathway. This study adds understanding about one way that community nurses might identify people with mental health difficulties. The trialled pathway, which was modified and refined following the study, is now available on the Internet as an evidence-based resource for community nurses in Australia to guide practice and maximize holistic care for war veterans and war widow(er)s where that care is funded by Department of Veterans' Affairs.

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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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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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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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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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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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Satisfaction levels with a community night nursing service

AIM: To compare the satisfaction levels of patients and carers with a community night nursing service. METHOD: Thirty seven patients and 23 carers completed satisfaction postal questionnaires. Respondents were further subdivided into acute, chronic and terminally ill patients and their carers. RESULTS: Satisfaction levels with the service were generally high, although respondents from the terminally ill group showed the lowest levels of satisfaction overall. The Kruskal-Wallis test showed that results between the groups were not significantly different. (Chi-square (x two) text= 3.52; df= two; P= 0.712). CONCLUSION: Although the results demonstrated positive levels of satisfaction with the community night nursing service, there were some respondents who indicated a low level of satisfaction. This could be explained by patients' and carers' lack of autonomy and inadequate provision of psychological care. 

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A scale to measure satisfaction of bereaved family receiving inpatient palliative care

Although satisfaction is an important outcome of medical care, there are no validated tools to quantify family satisfaction with hospital-based palliative care. In this nationwide postal survey, an instrument to measure informal carer satisfaction with an inpatient palliative care service was validated. A 60-item questionnaire was mailed to 1344 bereaved people who had lost their family members at 50 palliative care units in Japan, and 850 responses were analysed (response rate=64%). The reliability, construct validity, and convergent validity of the scale were examined after the responses were randomly divided into two groups: a training set used in the development phase (n=500) and a testing set used in the validation phase (n=350). The number of scale items was reduced from 50 to 34 through psychometric techniques in the development phase. In the testing sample, the overall Cronbach's coefficient alpha for the final 34-item scale was 0.98. A factor analysis revealed that the scale consisted of seven subcategories: Nursing Care, Facility, Information, Availability, Family Care, Cost, and Symptom Palliation. The total score of the scale was significantly correlated with the degree of global satisfaction of the bereaved (Spearman's r=0.78). In conclusion, this 34-item scale, the Satisfaction Scale for Family Members Receiving Inpatient Palliative Care (Sat-Fam-IPC), has acceptable psychometric properties and would be a useful tool to measure carer satisfaction with an inpatient palliative care service.

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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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Cash for care in the French welfare state: a skilful compromise?

The French system of social care policy for dependent older people is an allowance known as the Prestation Specifique Dependance (PSD) from January 1997 to December 2001 and subsequently the Allocation Personalisee a l'Automie (APA) from January 2002 for services or to pay a member of the family. The chapter covers demographic factors underlying this policy development with statistical tables, and the two principal stages of French social care policy, examining the impact of these on carers who may be either formal (paid) or informal (unpaid). The development in France of a policy relating to frail older people has been very slow with the political debate comprising four main issues - compulsory or optional insurance, funding and management, the relationship of the different welfare sectors and the relationship between the family, the market and the state. The development of the PSD and its characteristics and take-up rates are explored. The policy was much delayed provoking intense dissatisfaction from [...]

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The nature of caregiving in children of a parent with multiple sclerosis from multiple sources and the associations between caregiving activities and youth adjustment overtime

This study explored youth caregiving for a parent with multiple sclerosis (MS) from multiple perspectives, and examined associations between caregiving and child negative (behavioural emotional difficulties, somatisation) and positive (life satisfaction, positive affect, prosocial behaviour) adjustment outcomes overtime. A total of 88 families participated; 85 parents with MS, 55 partners and 130 children completed questionnaires at Time 1. Child caregiving was assessed by the Youth Activities of Caregiving Scale (YACS). Child and parent questionnaire data were collected at Time 1 and child data were collected 12 months later (Time 2). Factor analysis of the child and parent YACS data replicated the four factors (instrumental, social-emotional, personal-intimate, domestic-household care), all of which were psychometrically sound. The YACS factors were related to parental illness and caregiving context variables that reflected increased caregiving demands. The Time 1 instrumental and social-emotional care domains were associated with poorer Time 2 adjustment, whereas personal-intimate was related to better adjustment and domestic-household care was unrelated to adjustment. Children and their parents exhibited highest agreement on personal-intimate, instrumental and total caregiving, and least on domestic-household and social-emotional care. Findings delineate the key dimensions of young caregiving in MS and the differential links between caregiving activities and youth adjustment.

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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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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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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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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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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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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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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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Service use and needs of people with motor neurone disease and their carers in Scotland

A national study of patients with motor neurone disease (MND) and their carers was conducted in Scotland in late 1996. A questionnaire covering areas such as: use of medical, social and voluntary services; use of or waiting for specialised equipment; satisfaction with provided services; and standard demographic data was used in face-to-face interviews conducted by the four Scottish Motor Neurone Disease Association care advisers. The care advisers also assessed the respondent’s level of impairment, using a standard instrument: the Amyotrophic Lateral Sclerosis Severity Scale (ALSSS). The data was analysed using SPSS-PC. In total 153 people participated (response rate 92%), and as expected with this patient group the study recruited more men (57%) than women. Sixty per cent of the sample was severely disabled as measured on the ALSSS. Health services did not meet the needs of respondents in 19% of the cases and social services failed to do so according to 24% of respondents. Eighty per cent of patients with MND had an identified carer. Nearly four out of 10 of these carers had their sleep disturbed regularly, and nearly a quarter of them would have liked to have more help. In addition, differences were found in service provision between the East and West of Scotland, and consequently differences in respondent’s perceptions about the extent to which needs were met. As found in similar studies, the formal health and social care sectors in conjunction with voluntary organisations are only partially managing the trajectory of patients with a rare progressive degenerative disease.

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Patient and carer input and the NHS: a vital tool in improving care

In every other industry, 'the customer is king' - so why should health care be any different? With reference to the Department of Health's newly published legislation, Real Accountability Guidance on the NHS duty to report on consultation, the author examines the importance of patient and carer input into NHS services. 

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The Business of Caring: Women's Self-Employment and the Marketization of Care

Our goal in this article is to contribute to a differentiated analysis of paid caring work by considering whether and how women's experiences of such work is shaped by their employment status (for example, self-employed versus employee) and the nature of care provided (direct or indirect). Self-employed care workers have not been widely studied compared with other types of care workers, such as employees providing domestic or childcare in private firms or private homes. Yet their experiences may be quite distinct. Existing research suggests that self-employed workers earn less than employees and are often excluded from employment protection. Nonetheless, they often report greater autonomy and job satisfaction in their day-to-day work. Understanding more about the experiences of self-employed caregivers is thus important for enriching existing theory, research and policy on the marketization of care. Addressing this gap, our article explores the working conditions, pay and levels of satisfaction of care workers who are self-employed. We draw on interviews from a small-scale study of Canadian women engaged in providing direct care (for example, childcare) and indirect care (for example, cleaning).

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Disability and carers service customer service survey 2008

This reports on the Disability and Carers (DCS) Customer Service Survey 2008. Results showed that overall satisfaction with the DCS continues to be high and that there have been some signs of improvement since the previous year. The report suggests a number of aspects of the service that should be focused on. Contents include: overall customer attitudes; delivering the customer promise / vision statement; making contact with the Disability and Carers Service; the claims process; strategic priorities for contact; areas for improvement; Disability and Carers Service priority customer groups; carers allowance; receiving DLA while in work or training.

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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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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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Outcomes of social care for adults: developing a preference-weighted measure

The aim of this study was to develop a measure of social care outcome, an equivalent to the quality-adjusted life year (QALY) in health, which could be used in a range of circumstances.

The project drew on previous and parallel work developing the Adult Social Care Outcome Toolkit and the national Adult Social Care Survey. We developed and tested an instrument designed to reflect service users' social care-related quality of life (SCRQoL) and tested it with 30 service users from a variety of user groups and 300 older home care service users. In parallel, we explored discrete choice experiment (DCE) and best-worst scaling (BWS) approaches to preference elicitation with 300 members of the general population, and cognitively tested these with service users. We also cognitively tested a computer-aided time trade-off (TTO) exercise using SCRQoL attributes with members of the general population. In the second phase, using the finalised instruments, BWS interviews were conducted with 500 members of the general population, TTO interviews with a follow-up sample of 126 of these respondents, and BWS interviews with 458 people using equipment services.

The final measure had eight domains: personal cleanliness and comfort, accommodation cleanliness and comfort, food and drink, safety, social participation and involvement, occupation, control over daily life and dignity. In addition to measuring current SCRQoL, the instrument includes questions used to establish service users' views of their 'expected' SCRQoL in the absence of services. The difference between a person's current and 'expected' SCRQoL provides an indicator of service impact.

There was good evidence for the validity of the descriptive system and the validity of the current, expected and SCRQoL gain scales. The DCE and BWS approaches yielded similar results and, once introductions made clear, were understood by service users. BWS was used for the main stages, as it had technical and cognitive advantages. The computer-aided approach to TTO worked well, and respondents found questions acceptable and understandable. There were no substantive differences in the preferences of service users and the general population. The key domain was control over daily life, with the lowest and highest levels strongly estimated in all models. After allowing for observable heterogeneity, service users' preferences appeared to be more closely associated with their own SCRQoL than with those of the general population. The consistency of the results with the results of a previous study allowed the final model to be based on the preferences of 1000 members of the general population. A formula based on the relationship between TTO and BWS values was estimated for a social care QALY, with '0' equivalent to 'being dead' and '1' being the 'ideal' SCRQoL state. Members of the population experienced significantly higher SCRQoL than service users.

Although further work is needed, particularly to develop an equivalent measure for informal carers and to explore the links with health QALYs, the measure has considerable potential. A number of methodological advances were achieved, including the first application of TTO in a social care context and use of BWS to establish service user preferences.

The National Institute for Health Research Health Technology Assessment programme.

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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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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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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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Difficulties, coping strategies, satisfaction and burden in informal Portuguese caregivers

Aims and objectives: To characterise the main difficulties, coping strategies, sources of satisfaction and levels of burden disclosed by informal caregivers of older people who are dependent due to physical and mental causes, in the Portuguese context and to compare the impact between caregivers for older people with physical dependence and caregivers for older people with mental dependence.

Background: Caring for a dependent older person is a complex process that puts two people in interaction, each with their own traits and their own histories of private life. When performing this role, the care provider needs to know how to deal with difficulties through a range of coping strategies. The outcome of this relationship may result in burden as a result of the volume of care, the complexity of care or the caregiver's inability to provide needed care. Caring for a family member can also be a source of satisfaction thanks to the pleasure of giving back and/or providing well-being.

Design: This is a quantitative, analytical and correlational study.

Methods: This study was conducted among two distinct groups–caregivers of older people without dementia (physical impairment) and caregivers of patients with dementia (impairment of a predominantly cognitive nature). Data were collected by administering a previously defined questionnaire that sought to gather various sorts of information (sociodemographic, clinical and environmental) and that included certain specific instruments, such as dependency ratio, cognitive assessment tests, an index of difficulties, a satisfaction index, an index of coping strategies and a burden scale.

Results: The sample consisted in 184 caregivers over 40 years of age, of which, 101 cared for dependent people without cognitive impairment and 83 cared for people with dementia. Most caregivers were women (87%), most were married (78·8%), with a low level of education (33·7% did not complete primary school and only 7·1% had any postsecondary education). Most were spouses or daughters (75·5%). The caregivers of older patients with dementia had lower levels of satisfaction, with a mean difference of 12·95 percentage points, p < 0·001. It appears that caring for older people with dementia implies a greater burden, with a mean difference of 15·4 percentage points, p < 0·001. There is a strong correlation between difficulties and burden (r = 0·89, p < 0·001) and between the effectiveness of coping strategies and satisfaction (r = 0·92, p < 0·001).

Conclusions: This study suggests that caregivers of older people with dementia are more vulnerable due to their higher levels of burden, which are associated with higher levels of difficulties and reduced sources of satisfaction.

Relevance to clinical practice: These data are essential for the management and implementation of health programmes that can reduce the vulnerability of caregivers. Programmes should address caregivers' difficulties and burden as a way to promote satisfaction with providing care.

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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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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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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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A qualitative evaluation of the impact of palliative care day services: the experiences of patients, informal carers, day unit managers and volunteer staff

Objectives: To explore the experiences of people involved in UK palliative care day services (PCDS) and identify the important outcomes of this service. Methods: Focus groups were carried out separately with patients, informal carers and volunteers from four purposively selected palliative care day units and with day unit managers from 11 units. Results: Patients benefited from both the support of PCDS professionals and social support of fellow PCDS patients, which contributed to a perceived improvement in their quality of life. Carers appreciated both the respite and support from PCDS, but acknowledged that they still had a poor quality of life. The challenges facing PCDS include the difficulties of discharging patients and the future role of volunteers. Discussion: PCDS improved patients' perceived quality of life and future evaluations on patient outcomes could use concepts such as self-esteem, selfworth and confidence. Future service provision could explore the possibility of a mixed service using both the traditional and appointment-based system.

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Participation in socially-productive activities, reciprocity and wellbeing in later life : baseline results in England

This paper examines whether participation in social activities is associated with higher levels of wellbeing among post-retirement age people in England, and, if so, whether these relationships are explained by the reciprocal nature of these activities. Cross-sectional analysis of relationships between social activities (including paid work, caring and volunteering) and wellbeing (quality of life, life satisfaction and depression) was conducted among participants of one wave of the English Longitudinal Study of Ageing (ELSA) who were of state pension age or older. Participants in paid or voluntary work generally had more favourable wellbeing than those who did not participate in these activities. Caring was not associated with wellbeing, although female carers were less likely to be depressed than non-carers. Carers, volunteers and those in paid work who felt adequately rewarded for their activities had better wellbeing than those who were not participating in those activities, while those who did not feel rewarded did not differ from non-participants. These results point to the need to increase the rewards that older people receive from their productive activities, particularly in relation to caring work.

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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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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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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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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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Charting carer satisfaction: the hospital experience

Reports on an evaluation of the efforts of the Royal United Hospital (RUH) Bath to improve the support offered to people with dementia and their family carers. The intervention included the recruitment of three part-time dementia coordinators, a seven-day older adult mental health liaison service with nurses and a psychiatrist, additional staff training and an increased emphasis on arts and music in the wards. An evaluation survey, carried out by RICE (The Research Institute for the Care of Older People), then explored the carers' experiences of the quality of care of the person with dementia received from admission to discharge while an inpatient at the hospital. Overall 181 carers completed the survey from a sample across five wards (22 of these were in the pre-implementation group). The main areas carers were impressed with were: the caring attitude of staff, the general care received and flexible visiting times. The main areas carers were displeased with were staffing levels, staff having limited time, lack of communication, wanting to speak to a doctor more and the need for better planning and discharge. It is noted that only a small number of the surveys could be collected before the intervention began, but the surveys did indicate an improvement in care. (Original abstract)

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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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Burden and quality of life in caregivers of persons with multiple sclerosis

Multiple sclerosis (MS) is the second most common cause of disability among nervous system diseases. This disease causes reduced quality of life of patients and those caring for them. Quality of life (QoL) measures consist of at least three broad domains: physical, mental and social. In the field of medicine, researchers have often used the concept of health-related quality of life, which specifically focuses on the impact of an illness and/or treatment on patients’ perception of their status of health and on subjective well-being or satisfaction with life. Subjective factors of QoL in MS patients include perception of symptoms, level of fitness, self-image, satisfaction with family life, work, the economic situation, interaction with other people, social support and life in general. Objective factors include the clinical picture of disease, social status, social and living conditions and the number and intensity of social contacts. While many generic and specific questionnaires have been developed to assess QoL in patients with MS, including general fatigue, there is a lack of specific questionnaires assessing QoL of caregivers.

In this paper, a review of selected studies on QoL and caregiver burden in MS and a summary of the most popular questionnaires measuring burden and QoL are presented. Special attention is paid to the first questionnaire specific for QoL of carers of persons with MS, CAREQOL-MS by Benito-León et al.

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Research to support the Duty to Review the Implementation of the Mental Health (Wales) Measure 2010...part 3 final report: assessments of former users of secondary mental health services

This study provides qualitative evidence on the views of service users, their carers and practitioners on the implementation of Part 3 of the Mental Health (Wales) Measure 2010. This part of the Measure is concerned with assessments of former users of secondary mental health services and enables individuals, who have previously been in receipt of secondary mental health services, to refer themselves directly back to secondary services for assessment. This allows assessments to take place without individuals necessarily needing to go to their GP or elsewhere for a referral, therefore improving access. The report draws upon the interviews conducted with service users, carers and practitioners. Findings under each of the specific review questions are presented in turn, covering: discharge period; access to information about entitlement to assessment; the experience of reassessment; the experience of self-referral; and satisfaction with outcomes.

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Pilot investigation of the effectiveness of respite care for carers of an adult with mental illness

Informal carers of an adult with mental illness have asked that respite care be an integral component of mental health service provision. The present study involved a pilot investigation of the effectiveness of accessing respite care for carers of individuals with a mental illness. It was hypothesised that compared to carers who have not accessed respite care, carers who access respite care would report lower burden and distress, higher life satisfaction and better health after their use of respite care. The study used a respite care group and comparison group of respite care non-users with a pre- and post-respite assessment, and 3-month follow-up design. Participants were 20 carers recruited through carer organisations; 10 carers who accessed respite and 10 carers who had never accessed respite. As expected, the respite care group reported a decrease in burden, but unexpectedly also reported an increase in stress, whereas the comparison group did not change over time. Further research is needed to explore the potential benefits and possible risks associated with different types of respite care using large samples within randomised controlled trials in order to inform respite care policy and service planning.

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The eCare Client Impact Survey (eCCIS) - Developing a new Tool for assessing Client Impacts of Telehealthcare

Telehealthcare is an increasingly popular option for health and social care organisations providing care to people in their own homes, principally providing the means to improve both the quality and efficiency of care services. However, the evidence-base for the impacts of telehealthcare in terms of general quality of life , well-being and satisfaction for older people and informal carers remains patchy. We argue that the impacts of telehealthcare lie in certain specific areas not sufficiently covered by existing measures. As a consequence, important knowledge about client impacts of telehealthcare is missing, with negative consequences for related decision processes. We present work conducted within the CommonWell and INDEPENDENT projects on developing an instrument that addresses these shortcomings and allows for a better assessment of the impacts of telehealthcare systems on end users and family carers. The proposed eCare Client Impact Survey (eCCIS) instrument covers ten domains: self-assessed impacts (positive and negative); impacts on the carer (burden, anxiety, ability to care, reassurance, time and resources spent caring); usefulness of the system; management of health status and care; usability of the system; fit with everyday life; satisfaction with telehealthcare staff; service valuation, willingness-to-pay; and overall satisfaction. The instrument was first tested in the evaluation of the CommonWell and INDEPENDENT pilots with about 1200 respondents. We present some of the results obtained by applying this instrument, and describe the future work that should be done to refine and validate it. 

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Coping as a caregiver: A question of strain and its consequences on life satisfaction and health-related quality of life

A majority of us will at some point in our lives take care of family members, relatives and friends in need of assistance. How will this affect us? Strain related to life satisfaction (LS) and health related quality of life (HRQoL) among caregivers aged 60 years and older has not been previously studied.

Objectives: The main objective was to describe characteristics of non-caregivers (n = 2233) and caregivers (n = 369). Further objectives were to examine differences in HRQoL and LS between caregivers and non-caregivers, and between caregivers stratified by level of strain.

Methods: We analyzed the differences in socio-demographics, social participation, locus of control and symptoms between groups. HRQoL was assessed by Short Form Health Survey (SF-12/PCS and MCS). LS was measured by the Life Satisfaction Index-A (LSI-A).

Results: Caregivers were younger, had more years of formal education, more often cohabiting and relied less on powerful others than non-caregivers. One hundred and thirty-three (36%) caregivers reported high strain. In a three-group comparison including non-caregivers and caregivers stratified for strain, high strain was associated with lower SF12-PCS, SF12-MCS and LSI-A (0.014, <0.001 and <0.001, respectively).

Conclusion: High strain affects caregivers’ HRQoL and LS in a negative way.

Practice: It is important for the health care sector to consider the possibility that symptoms in a person acting as a caregiver can be related to high perceived strain.

Implications: A general policy program aiming to identify caregivers and their needs for support is much needed.

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Carers' perceptions of community occupational therapy: short report

This paper reports on the experience of informal carers whose family members have received occupational therapy. The qualitative study focused on one city. Semi-structured interviews were carried out with six carers and the interviews were analysed using thematic analysis. The carers were generally satisfied with the occupational therapy that the care recipient received. The carers felt involved in the occupational therapy, although some had a lengthy wait for this. There were limited examples to demonstrate that carers received support in their own right during assessment and intervention. These findings highlighted the need for a timely occupational therapy service and the potential need to expand occupational therapists' role with carers. 

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Feelings of rewards among family caregivers during ongoing palliative care

Palliative family caregivers appear to experience the rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. The present study aimed at describing feelings of reward among family caregivers during ongoing palliative care. A further aim was to compare the experience of rewards in relation to sex and age.

Methods: The sample consisted of 125 family caregivers and took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were employed to describe characteristics of the participants and the level of rewards. A Mann–Whitney U test was used to compare differences between groups of different sex and age.

Results: Palliative family caregivers reported general high levels of reward. The greatest source of rewards involved feelings of being helpful to patients. This was closely followed by giving something to patients that brought them happiness and being there for them. The smallest sources of rewards were related to personal growth, self-satisfaction, and personal meaning. There was also an association between rewards and age but not between men and women.

Significance of results: Family caregivers experienced the rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of reward seem to be about handling a situation in a satisfying way, feeling competent and confident to take care of the patient and thereby feeling proud. Support could preferably be designed to improve a family caregiver's ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources.

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Reducing emotional distress in people caring for patients receiving specialist palliative care - Randomised trial

Background: Caring for relatives with advanced cancer may cause psychological and physical ill health.

Aims: To evaluate the effectiveness of increased support for distressed, informal carers of patients receiving palliative care.

Method: The sample was composed of 271 informal carers who scored over 5 on the 28-item General Health Questionnaire (GHQ–28). The intervention comprised six weekly visits by a trained advisor. Primary outcome was carer distress (GHQ–28) at 4-week, 9-week and 12-week follow-up. Secondary outcomes were carer strain and quality of life, satisfaction with care, and bereavement outcome.

Results: Scores on the GHQ–28 fell below the threshold of 5/6 in a third of participants in each trial arm at any follow-up point. Mean scores in the intervention group were lower at all time points but these differences were not significant. No difference was observed in secondary outcomes. Carers receiving the intervention reported qualitative benefit.

Conclusions: The intervention might have been too brief, and ongoing help might have had accruing benefits. Alternatively, informal carers of patients with cancer may already receive considerable input and the advisor’s help gave little additional advantage; or caring for a dying relative is extremely stressful and no amount of support is going to make it much better.

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Evaluation of a resilience-based intervention for children of parents with mental illness

Objective: The purpose of the present study was to evaluate the effectiveness of a group psychosocial intervention for children (aged 12–18) of a parent with mental illness (copmi).

Method: A treatment and waitlist-control design study with pre- and post-treatment, and 8 week follow up, was carried out. The treatment (n = 27) and control (n=17) groups were compared on three groups of dependent variables: intervention targets (mental health literacy, connectedness, coping strategies), adjustment (depression, life satisfaction, prosocial behaviour, emotional/behavioural difficulties), and caregiving experiences.

Results: Group comparisons failed to show statistically significant intervention effects, but reliable clinical change analyses suggested that compared to the control group, more intervention participants had clinically significant improvements in mental health literacy, depression, and life satisfaction. These treatment gains were maintained 8 weeks after treatment. Participant satisfaction data supported these treatment gains.

Conclusions: Given study limitations and the modest support for intervention effectiveness it is important that this and other similar interventions should continue to be revised and undergo rigorous evaluation.

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The association between caregiving satisfaction, difficulties and coping among older family caregivers

Aims and objectives.  The aim was to study the association between gender, extent and content of care, satisfaction, coping and difficulties in the caregiving situation among older (75+) caregivers and to identify clusters of caregivers. The aim was also to explore psychometrically two instruments assessing satisfaction and difficulties in family caregivers.

Background.  Caregiving is a complicated phenomenon. Much of the research has focused on negative aspects, such as the burden, stress and emotional strain. Caregiving is known to affect health negatively for the caregivers. Little is known about satisfaction and motivation in voluntary work, such as informal caregiving, especially among older persons.

Design and methods.  Cross-sectional. The sample for this study consisted of 171 informal caregivers aged 75 and over, identified from an age-stratified sample in a postal survey among older people in the southern part of Sweden.

Results.  Male caregivers proved to be more satisfied than female caregivers; caregiving had seemingly widened their horizon and had helped them to grow as persons. Based on satisfaction scores, those satisfied had a higher proportion of male caregivers and a significantly higher amount of caregiving hours per week. They used other coping strategies than the respondents in the other cluster, i.e. less satisfied in using more problem-solving strategies.

Conclusions.  The instruments tested were appropriate for work in clinical and research settings, although the internal dropout indicates that a shorter version would be more useful. Those who found satisfaction in care used more problem-focused coping strategies and were more often men than women. From a salutogenic point of view, this may give important knowledge about factors that can promote health. The findings indicate that women deserve extra attention as informal caregivers as they did not find caregiving as rewarding as the men did. This may in turn make them less protected against the negative consequences of caregiving.

Relevance to clinical practice.  Reinforcing the health-promoting qualities in caregivers who are not feeling well, with women as a particularly vulnerable group, may restrict unnecessary suffering for both the caregiver and the person cared for.

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Informal carers of mentally infirm elderly in Lancashire

Objectives: To investigate the determinants of satisfaction in caregiving and to compare satisfaction in care-giving amongst carers of demented and non-demented mentally infirm elders; and, assess carer attitudes and concerns, and their implications on care in the community.; Design: Cross-sectional study of informal carers of the elderly referred to a psychogeriatric service, using a questionnaire investigating carer satisfaction (CASI), care-recipient dependency needs, carer burden (CADI), carer concerns and attitudes in relation to caregiving, and the 28-item GHQ.; Setting: Lancashire communities of Fleetwood, Thornton-Cleveleys, Poulton-Le-Fylde, and Over-Wyre.; Results: Carers achieved significant degrees of satisfaction in their role as care-givers; there was no significant difference in the degree of satisfaction gained by carers of the demented and non-demented. The mean CASI score, for carers of the demented and non-demented was 23(5.5) and 24.4 (5.7) respectively (mean difference -2.9; CI -4.6, 0.1; p=0.058). Dissatisfaction in care giving was determined by total burden (CADI) scores, and younger carer age. Emotional distress in carers was weakly inversely correlated with CASI scores (r=-0.21, p=0.042). Concerns expressed by carers, included desire for information on care recipient disability (39.5%) and fear of nursing/residential home placements (43%). Most carers had a generally positive attitude to care giving, in spite of significant degrees of burden to which they were subjected. Conclusions: Carer-related factors, particularly younger age, rather than dependency factors, were determinant of care giving satisfaction. Greater involvement of older persons in care giving should be encouraged, with younger persons assisting if care giving becomes overbearing. Carers require education on care-recipient disabilities and the benefits of care in formal care institutions.

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Research to support the Duty to Review the Implementation of the Mental Health (Wales) Measure 2010...part 1 final report: local primary mental health support services

Opinion Research Services (ORS) was commissioned by Welsh Government in June 2013 to undertake qualitative research to support the Duty to Review the Mental Health (Wales) Measure 2010.

1.2 Information and data are gathered by Welsh Government from a range of sources to inform the Review including this study, regular submissions from health board/local authority services, health board primary care satisfaction surveys and third sector surveys. Welsh Government is responsible for coordinating all inputs to the Review and for final reporting to Welsh Ministers.

1.3 This study by ORS provides qualitative evidence on the views of service users, their carers and practitioners on the implementation of Parts 1 to 4 of the Measure. The findings are presented in four separate reports; one for each part of the Measure and an overall summary report in Welsh and English versions.

1.4 An interim report1 published in 2014 presents the background and methodology for this study in some detail which are not repeated in the final reports. This report presents findings from qualitative interviews conducted between July 2014 and April 2015 involving participants with direct experience of Part 1 of the Measure.

1.5 The Mental Health (Wales) Measure 2010 introduced a number of changes relating to the assessment of and treatment of people with mental health problems in Wales, the essential requirements of which are set out in four parts: Part 1: Local Primary Mental Health Support Services Part 2: Coordination of and Care and Treatment Planning for Secondary Mental Health Users Part 3: Assessments of Former Users of Secondary Mental Health Services Part 4: Mental Health Advocacy

Original report (pdf) on the Welsh Government website.

How caring for a parent affects the psychosocial development of the young

Aim To investigate the impact of caring for a parent on the psychosocial development of the young person. Methods A total of 20 young carers and 20 non-caregiving peers, aged 11-18 years, were compared on self-report measures of life satisfaction, self-esteem, and behavioural strengths and difficulties. Parental reports on their child's behaviour were obtained and measured. Results Young carers reported lower life satisfaction and self-esteem compared with non-caregiving peers, and their parents rated them as having more difficulties with peer relationships and more emotional symptoms. There was no evidence of more pro-social behaviour on the part of young carers. Conclusions Caregiving has a negative effect on young people overall; improved support of and more research around young carers are required.

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Hospital versus home care for the acutely mentally ill? Preferences of caregivers who have experienced both forms of service

Objective: Demonstration studies of community treatment as an alternative to hospitalization have reported high degrees of satisfaction by family carers. We aimed to determine the extent of carer preference for hospital versus community treatment for acute mental illness in a routine setting where carers had experienced both service types.

Method: Patients who had contact with both a hospital inpatient service and a Crisis Assessment and Treatment (CAT) team within the previous 5 years were identified. Seventy-seven family carers of these patients completed a questionnaire which identified their preference for services, and psychological and demographic variables likely to be predictive of their choice.

Results: Only half the carers preferred a CAT service to treat their relative in the event of a future relapse. Psychological variables were better predictors of choice than were demographic variables.

Conclusions: The proportion of caregivers who prefer community treatment for acute psychosis may be smaller than previously thought. The lower carer satisfaction found here may be associated with the short-term interventions of Victoria's CAT teams, the severity of acute relapses and the duration of the patient's mental health problem.

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Estimating the costs of informal care for people with Alzheimer's disease: methodological and practical challenges

In Alzheimer's disease and related disorders estimates of informal care costs have been neglected and when included in cost of illness studies, valuations have been highly variable. This illustrates the need to standardise the methodology not only for valuing formal, but also informal care costs. Methods used for valuing informal care are identified, together with theoretical and practical challenges in measurement. In particular the measurement of time and it's associated satisfaction or utility is complex and valuations of time need to consider aspects of the caregiving experience which influence the marginal valuation of the time spent caring. Argues that more empirical work is required to elicit information on both the positive and negative satisfaction associated with caregiving and to incorporate this into valuations of the costs related to informal care.

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A support group for caregivers of patients with frontotemporal dementia

Several recent articles have pointed out that caregivers of patients with frontotemporal dementia (FTD) need counselling and support. To date, however, no support groups have been provided other than those available to caregivers of patients with Alzheimer's disease (AD). At our outpatient unit for cognitive disorders we initiated a specific support group for caregivers of patients with FTD. This pilot project had four objectives: 1) to provide information, advice and support to caregivers, 2) to learn more about the specific problems and needs of family carers of patients with FTD and to explore the differences to caregiver burden in AD, 3) to encourage mutual support and development of coping strategies, 4) to evaluate the intervention using a questionnaire completed by the caregiver. Eight spouse caregivers of patients diagnosed with frontotemporal dementia (FTD) participated in special support groups. Seven weekly sessions of 90 minutes' duration were held. To evaluate the program participants were asked to complete a questionnaire about their satisfaction with the support group immediately after the final session. Six months after the intervention they received a questionnaire by mail gathering information on coping efficacy. It became obvious that many problems faced by caregivers of patients with FTD are different from those encountered in AD. During group meetings participants were encouraged to express their own needs and to deal with painful emotions, including aggression, anger, mourning and guilt. Caregivers felt relieved by sharing their problems with others. They were able to learn from each other and to share coping strategies. The group also helped to establish new social relations contacts and even friendships. The participants rated the program as useful and said that benefits were sustained even six months after termination. We conclude from these initial observations that caregiver support groups are a useful component in the management of patients with FTD. Such groups should be tailored to the specific problems and needs of these caregivers. To maintain benefits, self-help groups are recommended even in the absence of professional input.

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Survey nonresponse among informal caregivers: effects on the presence and magnitude of associations with caregiver burden and satisfaction

Background: Informal caregiving is becoming more relevant with current trends such as population ageing. However, little is known about nonconsent and nonresponse bias in caregiving research. We investigated nonconsent and nonresponse bias in a sample of informal caregivers who participated in the LifeLines Cohort Study, and were invited for participation in an additional caregiving study.

Methods: We compared socio-demographic characteristics, caregiver health, caregiving situation, and caregiver outcomes of nonconsent and consent caregivers, and nonresponse and response caregivers, on LifeLines data, by using Chi-square tests, Independent Sample T-tests, and Mann-Whitney tests. Furthermore, we examined the influence of nonconsent and nonresponse on the presence and magnitude of the associations between caregiver characteristics and two commonly used caregiving outcomes (caregiver burden and satisfaction). We conducted multinomial logistic regression analyses, including interaction terms with nonconsent and nonresponse.

Results: Within a subcohort of 8443 caregivers, aged >18 years, 5095 caregivers (60 %) gave consent for participation in the caregiving study. Within the subgroup of 2002 caregivers who received the questionnaire, 965 (48 %) responded. Caregivers who were highly involved in caregiving (i.e. high time investment, high caregiver burden), gave more commonly consent to participate, and responded more often to the questionnaire. Nonconsent and nonresponse influenced the associations between caregiver characteristics and caregiver burden for only a few characteristics, mainly indicating the level of caregiving involvement (e.g. time investment, caregiving duration). Especially for caregiver burden, these indicators were stronger for consent and response caregivers than for nonconsent and nonresponse caregivers.

Conclusions: Our findings are important for caregiving research, as they emphasized that participation might not be evenly distributed among caregivers, and that the possibility of nonconsent and nonresponse bias should be considered.

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A longitudinal study of home care clients and their informal carers

The objective of the longitudinal study was to monitor physical and cognitive changes in a population of 330 older people being supported at home by health services. The participants were 75 years and older and classified as having moderate-to-high needs. A total of 210 primary informal carers were recruited to determine their specific needs and how they coped as dependency levels of their care-recipients changed. Data were collected using six different tools. Two questionnaires were mailed out to participating carers. Assessments of care recipients were carried out at three sampling points over the study period. The clients showed a significant increase in physical dependency and an overall increase in cognitive impairment over time. Only 32% of carers lived with care recipients, and changes in dependency, cognitive changes, lack of respite and performing activities of daily living were all major stressors for informal carers. The needs of informal carers are reported and discussed in the context of recommendations of the Commission on the Future of Health Care in Canada.

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Multimedia computer-assisted instruction for carers on exercise for older people: development and testing

Aim.  This paper is a report of a study conducted to develop a multimedia computer-assisted instruction for informal carers and test its content validity, user difficulty and user satisfaction.

Background.  Healthy ageing is an increasingly important public health target globally. Changes in technology offer the opportunity for e-health promotion as a means of educating populations and healthcare staff to meet public health targets.

Methods.  Computer-assisted instruction was developed and tested systematically in four phases during 2008, and these are outlined. Phase 1 consisted of topic and content identification using a literature review. Phase 2 comprised refinement of the content using an academic panel of experts. Phase 3 was the production of computer-assisted instruction comprising problem clarification, algorithm designing with reference to a cognitive theory of multimedia learning and program coding. Phase 4 consisted of testing for content validity, and writing a computer-assisted instruction manual and testing it for user difficulty and satisfaction.

Results.  The data from each phase informed the development and refinement of the computer-assisted instruction. Content validity was confirmed and ‘test’ users reported few difficulties in its use and high satisfaction.

Conclusion.  This e-health promotion initiative is an example of how computer-assisted instruction may be developed to teach carers of older people.

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Family carers' accounts of general practice contacts for their relatives with early signs of dementia

The role of families in supporting people with dementia is widely acknowledged in literature and UK government policy. The role of general practice in ensuring early and effective support for people living with mental health problems including dementia is also enshrined in UK policy. As part of a larger study, a total of 122 carers were asked to rate predefined aspects of the primary care response. For some responses they were also asked to provide a reason for their rating. The purpose of this study was to examine carers' accounts of contacts with general practitioners (GPs) and general practice teams when they were first approached with concerns about their relative. Findings suggest that, on average, carers rate the service as being at least ‘good'. However, their accounts describe a wide variety of experiences and demonstrate that expressed satisfaction does not necessarily reflect a satisfactory service. Both practitioner-related and carer-related issues were cited as reasons for their ratings. Implications for practice and research are discussed.

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Illness careers and continuity of care in mental health services: a qualitative study of service users and carers

Continuity of care is considered by patients and clinicians as an essential feature of good quality care in long-term disorders, yet there is general agreement that it is a complex concept and the lack of clarity in its conceptualisation and operationalisation has been linked to a deficit of user involvement. In this paper we utilise the concept of the ‘patient career’ to frame patient accounts of their experiences of the mental health care system. We aimed to capture the experiences and views of users and carers focusing on the meanings associated with particular (dis)continuities and transitional episodes that occurred over their illness career. As part of a large longitudinal study of continuity of care in mental health a sub-sample of 31 users was selected together with 14 of their carers. Qualitative interviews framed around the service user's illness career explored general experiences of relationship with services, care, continuity and transition from both user and carer perspectives. Five key themes emerged: relational (dis)continuity; depersonalised transitions; invisibility and crisis; communicative gaps and social vulnerability. One of the important findings was the fragility of continuity and its relationship to levels of satisfaction. Supportive, long-term relationships could be quickly undermined by a range of factors and satisfaction levels were often closely related to moments of transition where these relationships were vulnerable. Examples of continuity and well managed transitions highlighted the importance of professionals personalising transitions and situating them in the context of the daily life of service users. Further research is required to identify how best to negotiate these key points of transition in the future.

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Caring for carers of people with stroke: developing a complex intervention following the Medical Research Council framework

Objective: To develop an intervention, using the first three phases of the Medical Research Council (MRC) framework for complex interventions, to facilitate coping skills in new carers of stroke patients.

Methods: In the preclinical (theoretical) phase, a theoretically based framework for a small group course for carers of people with stroke was developed. The intervention was grounded in a cognitive behavioural model and included carers' needs identified from a literature review. Phase I (modelling phase) comprised a qualitative study involving one-to-one semi-structured interviews with a purposive sample of informal carers of people with stroke. Following this, the intervention was modified. In phase II (exploratory phase), the modified intervention was delivered by a clinical psychologist and stroke nurse practitioner to five carers. Following postcourse interviews the course was further refined and delivered to seven new carers who subsequently completed a satisfaction questionnaire.

Results: Carers' needs identified from the literature included information provision; managing emotions; social support; health maintenance; and practical problem solving. Consultation with existing carers confirmed these as important issues with a strong emphasis on finding niches of control in life, becoming an expert carer, and dealing with emotional upheaval. Participants reported feeling more optimistic and empowered subsequent to the course.

Conclusions: The MRC framework provided a useful methodology for the development of a complex intervention. The course aimed to assist carers to regain control over aspects of their lives and manage their emotions. It was feasible to run and acceptable to carers; however a randomized controlled trial (RCT) is required to evaluate its effectiveness.

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Caring for a person with dementia: Exploring relationships between perceived burden, depression, coping and well‐being

This study was concerned with identifying the impact of variables such as gender, length of time caring, coping style, depression and perception of caregiving burden on the physical and psychological well‐being of carers of persons with dementia. Forty‐two carers aged between 21 and 88years from Blue Care's Homecare Dementia Service and Cairns Aged Care Health Service participated in the study. A cross‐sectional survey research design was used, with participants providing information on the Satisfaction with Life Scale, the Center for Epidemiologic Studies Depression Scale, the COPE, Short Form (SF)‐12 and the Zarit Caregiver Burden Scale. Perceived burden accounted for 41.7% of the variance in satisfaction with life as a subjective measure of well‐being. There were no significant differences between male and female carers. Satisfaction with life was not found to decrease with length of time caring for the dementia sufferer. There were no significant findings in regard to coping style or physical health of carers. The well-being of carers can be enhanced through strategies which lead to a reduced perception of burden, with respite services providing tangible relief from burden.

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Satisfaction with respite care: a pilot study

Satisfaction with respite care may be bound up with a variety of factors. The interaction of social support with ratings of a carer's satisfaction with respite care has not been explored in published work. The present authors postulated that social support, both during caring and during periods of relief from caring whilst in receipt of respite care, would be associated with greater satisfaction with respite care. They embarked upon a pilot study of carers who were looking after dependants with dementia, a particularly demanding form of care. Previously validated scales were used for determining levels of social support, and for assessing possible confounding factors such as carer depression or strain. One hundred and forty carers were contacted, but only 26 completed the questionnaires. In terms of perceived benefit to the carer, satisfaction was high (rating scale = 1–7, mean = 5.8, mode = 7) and correlated significantly with the numbers of people in the social support network (r = 0.57, P = 0.002), albeit not with any of the four measured types of support which they may have provided. Carer satisfaction was not significantly correlated with carer strain nor depression scores. Regression analysis demonstrated that 17% of the variance in this satisfaction score was accounted for by the numbers in the social support network. Other factors did not significantly explain the observed variation.

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Assessing palliative care needs: views of patients, informal carers and healthcare professionals

Aim.  This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers.

Background.  Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need.

Method.  Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework.

Findings.  Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases.

Conclusion.  All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.

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Patients' and carers' experiences of UK memory services

Objective: The objective of this study is to test the validity of an accreditation programme for memory services in the UK by investigating whether different levels of accreditation status (excellent compared with accredited) are reflected in patients' and carers' reported satisfaction. Method: A comparison of survey data from patient and carer feedback questionnaires collected from services as part of the accreditation process. Results: Five hundred and eighty-three patient questionnaires and 663 carer questionnaires were returned from 41 services. Patients and carers who attended memory services which were later ‘accredited as excellent’, were more likely than those who had visited ‘accredited’ services to have: been given written information about a variety of topics; been asked for feedback about using the memory service; and had found it easier to get to their appointments. Carers attending services accredited as excellent were more likely to have been offered an assessment of their needs. Conclusion: Patients and carers had very good experiences of memory services overall whether they had standard or excellent accreditation. However, ‘excellent’ services were consistently better on a number of factors. This provides further support that the accreditation process is an important indicator of the quality of memory services. Copyright 2015 John Wiley & Sons, Ltd.

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The impact of caring for adults with intellectual disability on the quality of life of parents

Background Because of an increase in life expectancy and de-institutionalisation, many adults with intellectual disability (ID) live with and are cared for by their parents throughout their adult lives. Because of caring demands, the quality of life (QOL) of parents may be affected. The study explored the impact of caring for an adult with ID on the QOL of parents. Methods Participants were 12 parents who were the full-time carers of an adult with ID. Participants were interviewed about the effect of caring on their QOL. Interviews were analysed thematically. Results Caring had a positive impact on QOL by enabling participants to develop relationships and receive support, participate in leisure activities, achieve a sense of personal satisfaction and enable a more positive appraisal of their lives. Caring had a negative impact on participants' QOL by restricting their relationships, leisure activities and employment opportunities. Caring was also associated with financial insecurity, frustrations at the service system and fear of what the future held for their offspring. Conclusions  Caring for an adult with ID had both positive and negative effects on parents' QOL. Improving services and service delivery, including the provision of residential services and respite, would address many of the issues that were reported to have a negative impact on parents' QOL.

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Resilience in children of parents with mental illness: Relations between mental health literacy, social connectedness and coping, and both adjustment and caregiving

This study investigated the relationships between resilience factors (mental health literacy, social connectedness, coping strategies) frequently targeted in interventions, and both adjustment (depressive symptomatology, life satisfaction, prosocial behaviour, emotional/behavioural difficulties) and caregiving outcomes in children (12 - 17 years) of a parent with mental illness. Forty-four participants completed questionnaires. Correlations showed weak support for the predicted beneficial associations of mental health literacy with caregiving and adjustment, stronger support for the beneficial relationships between social connectedness and adjustment, and strong support for the adverse links of disengagement and involuntary coping strategies with adjustment and caregiving. Findings suggest that some resilience factors have a differential impact on adjustment and caregiving, and support the focus of interventions on modifying resilience factors.

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Literature review: use of respite by carers of people with dementia

Respite care is a cornerstone service for the home management of people with dementia. It is used by carers to mitigate the stress related to the demands of caring by allowing time for them to rest and do things for themselves, thus maintaining the caring relationship at home and perhaps forestalling long-term placement in a residential aged care facility. Despite numerous anecdotal reports in support of respite care, its uptake by carers of people with dementia remains relatively low. The aim of this paper was to examine the factors that constitute the use of respite by carers of people with dementia by reviewing quantitative and qualitative research predominantly from the years 1990 to 2012. Seventy-six international studies of different types of respite care were included for this review and their methods were critically appraised. The key topics identified were in relation to information access, the barriers to carers realising need for and seeking respite, satisfaction with respite services including the outcomes for carers and people with dementia, the characteristics of an effective respite service and the role of health workers in providing appropriate respite care. Finally, limitations with considering the literature as a whole were highlighted and recommendations made for future research.

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Multicenter randomized controlled trial of an outreach nursing support program for recently discharged stroke patients

Background and Purpose— Many stroke patients and informal carers experience a decreased quality of life after discharge home and are dissatisfied with the care received. We assessed the effectiveness of an outreach nursing care program.

Methods— In a multicenter trial, 536 stroke patients were randomized at discharge to standard care (n=273) or standard care plus outreach care (n=263). The outreach care consisted of 3 telephone calls and 1 home visit within 5 months after discharge by 1 of 13 stroke nurses. Patients were masked for the trial objectives. Six months after discharge, they assessed the 2 primary outcomes: quality of life (Short Form 36 [SF-36]) and dissatisfaction with care. Secondary measures of outcome were disability, handicap, depression, anxiety, and use of health care services and secondary prevention drugs. Informal carers assessed strain, and social support. Analysis was by intention to treat.

Results— Twelve patients died before follow-up, 38 declined outcome assessment, and 486 completed the primary outcome assessments. Outreach care patients had better scores on the SF-36 domain “Role Emotional” than controls (mean difference 7.9 [95% confidence limit, 0.1 to 15.7]). No statistically significant differences were found on the other primary outcome measures. For secondary outcomes, no statistically significant differences were found, except that intervention patients used fewer rehabilitation services (relative risk, 0.66 [0.44 to 1.00]) and had lower anxiety scores (median difference 1 [0.19 to 2.79]).

Conclusions— This outreach nursing stroke care was not effective in improving quality of life and dissatisfaction with care of recently discharged patients.

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An evaluation of the impact of voluntary sector family support workers on the quality of life of carers of schizophrenia sufferers

An evaluation was conducted of voluntary sector family support workers (FSWs) working with families of schizophrenia sufferers. FSWs completed a diary schedule and interviews were conducted with 15 co-professionals from the FSWs' multi-disciplinary teams and 62 carers from FSWs' caseloads. Carers' problems were assessed using the burden component of the Social and Behavioural Assessment Schedule and the Lancashire Quality of Life Profile. Carers were asked about the type of support received and their satisfaction. The findings revealed the considerable pressures of caring and highlighted the value perceived by both carers and coprofessionals of the FSW as a counselling, listening, information and advocacy resource. The diary study revealed that FSWs spend 40% of their time providing emotional and/or practical support. The impact of this was suggested by the superior ratings of quality of life and lower burden scores among carers with whom the FSW had longer-term involvement.

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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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Are the needs of carers being met?

This paper reports on interviews with 30 carers of working age in north-west England. Respondents revealed a general dissatisfaction with government initiatives and policy. The findings suggest that in the main either the policy, or its implementation at grassroots level, or both have little impact. 

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The Effects of Incidence of Care Needs in Households on Employment, Subjective Health, and Life Satisfaction among Middle-aged Family Members

In this study, based on longitudinal data, we investigate whether Japanese middle-aged men and women become less likely to have a job and whether their sense of well-being decreases when they have a family member who needs care. We find a consistent negative impact of having a family member who needs care on employment, but no impact on subjective health and life satisfaction. Further, the differences-in-differences (DID) estimation, based on both unmatched and matched data, shows that the Long-Term Care Insurance (LTCI) introduced in 2000 did not mitigate the adverse impact on the probability of being employed.

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Gender differences in the construction and experience of cancer care: The consequences of the gendered positioning of carers

The experience and construction of caring in 50 informal cancer carers, 35 women and 15 men, was examined using a critical realist approach and a mixed method design. Women reported higher rates of depression, anxiety, unmet needs and burden of care than men. No gender differences were found in time spent care-giving, suggesting that gendered roles are implicated in distress and coping. Semi-structured interviews with 13 carers were used to identify gender differences in caring, analysed using positioning theory. Women described being positioned as all encompassing expert carers, expected to be competent at decision-making, a range of physical caring tasks, and provision of emotional support for the person with cancer. The consequences of this positioning were over-responsibility and self-sacrifice, physical costs and overwhelming emotions, which were self-silenced. In contrast, men carers positioned caring as a competency task which they had mastered, and which provided them with satisfaction, with the emotions of the person with cancer, or their own emotions, being negative aspects of caring. It is concluded that cancer caring is tied to gendered constructions and expectations, with considerable implications for psychological well-being and coping, and for carer support services, which need to take gender issues on board.

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Informal caregiving transitions, subjective well-being and depressed mood: Findings from the English Longitudinal Study of Ageing

Objectives: To prospectively investigate the impact of transitions in informal caregiving on emotional well-being over two years in a large population study of older people.

Methods: Information on provision of unpaid care in 2004/2005 and 2006/2007 was available for 6571 participants in the English Longitudinal Study of Ageing. Three well-being domains were also assessed on each occasion: life satisfaction (measured with the Satisfaction with Life Scale); quality of life (assessed with the CASP-19 scale); and depression symptoms (measured using the Centers for Epidemiologic Studies Depression Scale). Multivariable analyses of the impact on well-being of two-year caregiving transitions (caregiving entry and caregiving exit, or continued caring) were conducted separately for spousal/child carers and carers of other family/non-relatives.

Results: Compared to non-caregiving, entry into spousal/child caregiving was associated with decline in quality of life (B = −1.60, p < .01) whereas entry into caregiving involving other kin relations increased life satisfaction (B = 1.02, p < .01) and lowered depression symptoms (B = −0.26, p < .05). Contrary to expectations, caregiving exit was related to increased depression in both spousal/child (B = 0.44, p < .01) and non-spousal/child (B = 0.25, p < .05) carers. Continued spousal/child caregiving was also related to decline in quality of life (B = −1.24, p < .05). Other associations were suggestive but non-significant.

Conclusion: The emotional impact of different caregiving transitions in later life differs across kin relationships; notably, spousal and child carers' well-being was consistently compromised at every stage of their caregiving career over the two-year study period.

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Absolutely fabulous-But are we? Carers' perspectives on satisfaction with a palliative homecare service

People with terminal diagnoses are increasingly encouraged to stay at home for the trajectory of their illness. Consequently, relatives and friends are progressively undertaking the informal carer role more frequently in conjunction with formal palliative care teams. Although there is international literature on the efficacy of and satisfaction with publicly funded palliative homecare, to date, there is scant literature reporting satisfaction with privately funded palliative homecare especially in Australia. Survey and focus group methods were used to explore carers’ levels of satisfaction with a private Australian palliative homecare service and to uncover unmet carer needs. There were 300 (41.7%) responses to the survey. Three focus groups were conducted, separately comprising current carers, past carers and palliative homecare staff. While there was a high level of satisfaction with the service generally, carers identified a lack of knowledge about aspects of the illness and treatment course. A desire to have time with nursing staff independent of the patient, including continued contact after the death of the patient, was also expressed. Themes relating to service delivery concerned lack of continuity of attending nursing staff and a perceived inadequate number of service visits. These findings were similar to results reported in the literature for publicly funded services. Therefore interventions used in the public sector to meet carer needs are likely to be successful if applied in the private sector.

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Expectations to and evaluation of a palliative home-care team as seen by patients and carers

OBJECTIVES: Although the number of palliative home-care teams is increasing, knowledge of what patients and principal informal carers expect from a home-care team is sparse. We aimed to elucidate this as well as evaluate a home-care team.

PATIENTS AND METHODS: Individual semi-structured interviews with nine patients and six carers before receiving home care and 2-4 weeks after. In total, 26 interviews were conducted. Interviews were analysed with Template Analysis. Peer debriefing was performed.

MAIN RESULTS: Patients and carers expected the team members to have specialised knowledge in palliative care and to improve their sense of security being at home. They also expected respite for carers and activities for patients. They evaluated the team positively but missed respite for carers and 24-h on-call service.

CONCLUSIONS: Patients and carers found the home-care team essential to their sense of security being at home. Primary health care professionals must receive any necessary training outside patients' homes. Offering respite for carers and 24-h on-call service would be an improvement.

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Evaluating the efficacy of psycho-social interventions for informal carers of cancer patients: a systematic review of the research literature

Recognition that informal cancer carers experience unmet needs and psychological distress has led to the development of a range of psycho-social interventions. The efficacy of such interventions is examined through a systematic review of the research literature, following National Health and Medical Research Council and Cochrane Collaboration guidelines. Of 13 level II randomised controlled trials (RCTs), only eight showed significant differences across groups, with moderate effect size. This included improvement in caregiver experience or appraisal of caregiving following psycho-education (two studies); improved sexual satisfaction, dyadic coping, relationship quality and communication, or reduced psychological distress, following couple counselling (4); reduced distress following family grief therapy (1); and reduction in distress in bereavement following home palliative care (1). Level III and IV studies were also reviewed, reporting positive effects of psycho-education (5), problem solving (3), an arts intervention (1) and a support group (1). However, methodological concerns limit the generalisability of findings of level III and IV studies. It is concluded that interventions should target those most in need of support; recognise specific needs of carers across cancer type and stage, gender and relationship context; be theory based; and evaluations should utilise RCT designs with outcome measures appropriate to the specific aims of the intervention, rather than global measures of distress.

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Emotional reactions and practical problems of the caregivers of hemodialysed patients

BACKGROUND: The international literature consistently shows that the psychosocial outcomes of the informal carers (caregivers) of chronically ill patients are influenced by factors such as personality traits and perceived social support, but few studies have investigated these variables in the caregivers of hemodialysed patients, and the reciprocal experience of chronicity.; METHODS: Fifty hemodialysed patients and their principal caregivers were recruited. They were administered specific questionnaires to evaluate their emotional stability and anxious/depressive reactions, the perceived burden related to the patients' condition, the quality of their family relationships and knowledge of the disease, and the degree of satisfaction with their lives. The study design was correlational and comparative. The data were analysed using Student's t test and Pearson's correlation.; RESULTS: The patients were significantly more anxious and depressed than their caregivers, and had a more negative perception of their family relationships; they also had significantly higher neuroticism scores. Although the caregivers showed good emotional stability and a relatively low level of perceived burden, they stated that their daily lives were not very interesting and involved few social contacts. Twenty-five percent of them declared that they had financial problems; twelve percent also said they had to face problems of disease-related stigma and embarrassment.  CONCLUSIONS: The results suggest that emotional stability is an important psychological determinant of perceived distress among the caregivers of hemodialysed patients. Assessing this personality trait and the reciprocal experience of chronicity in patients and caregivers may help nephrology teams identify subjects at major psychological risk, and to select the appropriate psychological support.

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The emotional costs of caring incurred by men and women in the British labour market

This study investigates whether men and women in caring occupations experience more negative job-related feelings at the end of the day compared to the rest of the working population. The data are from Wave Nine of the British Household Panel Survey (1999) where respondents were asked whether, at the end of the working day, they tended to keep worrying or have trouble unwinding, and the extent to which work left them feeling exhausted or “used up.” Their responses to these questions were used to develop ordinal dependent variables. Control variables in the models include: number of children, age, hours worked per week, managerial responsibilities and job satisfaction, all of which have been shown in previous research to be significantly related to “job burnout.” The results are that those in caring occupations are more likely to feel worried, tense, drained and exhausted at the end of the working day. Women in particular appear to pay a high emotional cost for working in caring occupations. Men do not emerge unscathed, but report significantly lower levels of worry and exhaustion at the end of the day than do women.

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How are the carers being cared for? A review of the literature

The purpose of our study was to identify the information and support needed by carers of the terminally ill or those receiving palliative care. Carers, in this instance, are family members, friends or neighbours. A review of the literature was sponsored by Help the Hospices’ four-year project, Care for the Carers of the Terminally Ill, funded by the Tubney Charitable Trust. The review was conducted in August 2006 and the content analysis was completed in October that year.

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Caregiver Bereavement Outcome: Relationship With Hospice at Home, Satisfaction With Care, and Home Death

This study used a randomized controlled trial design to investigate the impact of hospice at home (HAH) on caregiver bereavement outcome. Secondary analyses considered the association between bereavement, place of death, and carers' assessment of support. Ninety-six informal carers of patients referred to HAH were surveyed six weeks post-bereavement about the quality of terminal care. Carers next completed measures of their own bereavement response and general health six months post-bereavement. There was no evidence that HAH had an impact on bereavement outcome. In contrast, perceptions of inadequate terminal support and high symptom severity were associated with worse carer bereavement response. However, it remains unclear whether carers' retrospective ratings constitute an accurate account of symptoms and care. Home deaths were associated with both better bereavement response and better physical health post-bereavement than were inpatient deaths. Further research is needed to investigate the implications of death at home for the carer.

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Carer satisfaction with telephone consultations in a community intellectual disability unit

This paper reports on a survey of carer satisfaction with telephone consultations with doctors in a community service for people with intellectual disability (also known as learning disability in the UK health services). A 10-item anonymized carer satisfaction questionnaire was sent out following telephone consultations over a 4 week period with questions about suitability, effectiveness, efficiency and appropriateness of telephone consultations. Out of 13 questionnaires sent, 11 were returned. There was a high level of satisfaction with accessibility, effectiveness and suitability. Similar numbers felt that telephone consultations were an efficient use of time. However more than one-third of carers said they would have preferred a face-to-face consultation with the doctor. Telephone consultations, although routine practice in psychiatry, need further research to establish them as a viable alternative to face-to-face consultations.

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Improving the interface between informal carers and formal health and social services: A qualitative study

Reports about the impact of caring vary widely, but a consistent finding is that the role is influenced (for better or worse) by how formal services respond to, and work with informal carers and of course the cared for person. We aimed to explore the connection between informal and formal cares and identify how a positive connection or interface might be developed and maintained. We undertook a qualitative descriptive study with focus groups and individual interviews with informal carers, formal care service providers and representatives from carer advocacy groups. Content analysis was used to identify key factors impacting on the interface between informal and formal carers and propose specific recommendations for service development. Community setting including urban and rural areas of New Zealand. Seventy participants (the majority informal carers) took part in 13 focus groups and 22 individual interviews. Four key themes were derived: Quality of care for the care recipient; Knowledge exchange (valuing carer perspectives); One size does not fit all (creating flexible services); and A constant struggle (reducing the burden services add). An optimum interface to address these key areas was proposed. Conclusion: In addition to ensuring quality care for the care recipient, specific structures and processes to support a more positive interface appear warranted if informal carers and services are to work well together. An approach recognising the caring context and carer expertise may decrease the additional burden services contribute, and reduce conflicting information and resultant confusion and/or frustration many carers experience.

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The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire

Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them 'rewarding'. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.

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Carers' experiences of involvement in care planning: a qualitative exploration of the facilitators and barriers to engagement with mental health services

Background: Formal recognition and involvement of carers in mental health services has been the focus of recent policy and practice initiatives as well as being supported by carers themselves. However, carers still report feeling marginalised and distanced from services. A prominent theme is that that they are not listened to and their concerns are not taken seriously. Compared to service user views, the reasons underpinning carers’ dissatisfaction with care-planning procedures have been relatively neglected in the research literature, despite the substantial and significant contribution that they make to mental health services. The aim of the study was to explore carers’ experiences of the care planning process for people with severe mental illness.

Methods: Qualitative interviews and focus groups were undertaken with carers. Data were combined and analysed using framework analysis.

Results: Whilst identifying a shared desire for involvement and confirming a potential role for carers within services, our data highlighted that many carers perceive a lack of involvement in care planning and a lack of recognition and appreciation of their role from health professionals. Barriers to involvement included structural barriers, such as the timing and location of meetings, cultural barriers relating to power imbalances within the system and specific barriers relating to confidentiality.

Conclusions: This qualitative study led by a researcher who was a carer herself has developed the understanding of the potential role of carers within the care planning process within mental health services, along with the facilitators and barriers to achieving optimal involvement.

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How does a cancer education program impact on people with cancer and their family and friends?

Background. In this article, we report on the effects of patient education for people with cancer in comparison to family and friends. Methods. Data are from 666 participants with cancer and 324 family and friends who completed preprogram and postprogram questionnaires. Results. Results show high levels of participant satisfaction and positive changes in measures such as illness perceptions and emotional functioning. In many cases, the pattern of change was different for people with cancer compared to family and friends. Conclusions. This education program may be useful for helping people with cancer cope with the disease, with some distinct benefits for family and friends.

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Monetising the provision of informal long-term care by elderly people: estimates for European out-of-home caregivers based on the well-being valuation method

Providing informal care can be both a burden and a source of satisfaction. To understand the welfare effect on caregivers, we need an estimate of the ‘shadow value’ of informal care, an imputed value for the non-market activity. We use data from the 2006–2007 Survey of Health Ageing and Retirement in Europe which offers the needed details on 29,471 individuals in Austria, Belgium, the Czech Republic, Denmark, France, Germany, Italy, the Netherlands, Poland, Spain, Sweden and Switzerland. Of these, 9768 are unpaid non-co-resident caregivers. To estimate net costs, we follow the subjective well-being valuation method, modelling respondents' life satisfaction as a product of informal care provision, income and personal characteristics, then expressing the relation between satisfaction and care as a monetary amount. We estimate a positive net effect of providing mode rate amounts of informal care, equivalent to €93 for an hour of care/week provided by a caregiver at the median income. The net effect appears to turn negative for greater high care burdens (over 30 hours/week). Interestingly, the effects of differences in care situation are at least an order of magnitude larger. We find that carers providing personal care are significantly more satisfied than those primarily giving help with housework, a difference equivalent to €811 a year at the median income. The article makes two unique contributions to knowledge. The first is its quantifying a net benefit to moderately time-intensive out-of-home caregivers. The second is its clear demonstration of the importance of heterogeneity of care burden on different subgroups. Care-giving context and specific activities matter greatly, pointing to the need for further work on targeting interventions at those caregivers most in need of them.

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Measuring satisfaction with social care amongst older service users: Issues from the literature

Issues of quality and accountability in social care for older people are of increasing importance. A key factor in determining quality is the extent to which older people themselves are satisfied with both the assessment of their needs and the services provided. The 1997 White Paper, Modernising Social Services, stated that local authorities will need to establish authority-wide objectives and performance measures to improve the quality and efficiency of services. In measuring quality, the White Paper stipulated that social service departments would need to design and administer satisfaction surveys as one means of capturing user and carer perceptions and experiences of services. This paper attempts to highlight some of the main issues to be considered when designing and conducting such surveys with older users of community care services. Through a review of the British and North American literature on older people's satisfaction with services, current approaches to measuring satisfaction are outlined and the relationship between the characteristics and circumstances of older people and their responses to satisfaction questions is examined. The paper concludes by offering some solutions to overcoming current problems by drawing conclusions about quality from survey findings, so that older people's opinions about the services they receive can begin to be assessed in a more meaningful way.

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Dying, death and bereavement: a qualitative study of the views of carers of people with heart failure in the UK

Background: This paper explores carers' views of dying, death and bereavement for family members who had recently died with heart failure adding to a growing literature on end of life experiences for people with conditions other than cancer.

Methods: Twenty interviews were conducted with bereaved carers of older people with heart failure (HF) who had been participating in a longitudinal study. Carers were approached in writing 3 months after the death. Interviews were transcribed verbatim and analysed thematically with the assistance of NUD*IST.

Results: Findings were grouped into three time periods: prior to death; the death itself and bereavement. Most carers found discussions about end of life with their family member prior to death difficult. Dissatisfaction with the manner of the death was focused around hospital care, particularly what they believed to be futile treatments. In contrast deaths in the home were considered 'good'. Carers adopted a range of coping strategies to deal with grief including 'using their faith' and 'busying themselves' with practicalities. There was some satisfaction with services accessed during the bereavement period although only a small number had taken up counselling.

Discussion: Our findings suggest that an absence of discussion about end of life care wishes with family members or health professionals is a barrier to advance care planning. Carers' perceptions about prioritising making the dying person comfortable can be in conflict with doctors' decisions to treat. Whilst carers report a range of strategies adopted in response to bereavement there is a need for continued support for vulnerable carers after the death of the person with HF.

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Informal carers' experiences and needs when supporting patients through chemotherapy: a mixed method study

Informal carers provide important emotional support to patients having chemotherapy and assistance in monitoring and managing side-effects. If they are inadequately supported in this, patient and carer morbidity may result. This study explored needs of informal carers supporting patients with cancer having chemotherapy. The study used a mixed methods approach. Carers of colorectal or lymphoma cancer patients at one comprehensive cancer centre participated. Questionnaire data informed semi-structured interviews conducted with a subsample of respondents. Interviews were analysed using Framework analysis. Questionnaire data were analysed descriptively. Fifty-nine informal carers were invited to participate; 48 returned the questionnaire (response rate 81%) and 13 were interviewed. Informal carers' needs for information about chemotherapy and its side-effects were largely met although a third felt completely or somewhat unprepared to deal with particular symptoms experienced by patients at home. Many carers had unmet needs regarding financial support and their own needs as carers. Assertiveness was important to many caring roles, but it appeared difficult for informal carers to adopt when they were unsupported in this and their role was unrecognised by health professionals. Future research should develop interventions to systematically prepare carers for their carer role, improve carer involvement and ultimately improve patient outcomes.

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Meeting the needs of patients' families in intensive care units

A review of articles published between 2000 and 2013, retrieved from several databases, was conducted to identify research findings regarding nursing interventions intended to meet the needs of the family members of patients in the intensive care unit. The dimensions of need identified were support, comfort, reassurance, information and closeness, with reassurance, information and closeness being the most important. Overall, the needs of patients’ family members were unmet. The results of studies revealed that providing families with proactive communication strategies and information via brochures or leaflets, developing education programmes and establishing family-centred care may be effective in increasing family members’ satisfaction, improving their understanding of the patient’s condition and decreasing anxiety and depression, and post-traumatic stress disorder. Consequently, nurses should promote comprehensive family-centred care by using the best evidence to meet families’ needs. However, more experimental studies are required to determine the effectiveness of specific interventions.

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People with dementia living alone: what are their needs and what kind of support are they receiving?

Background: In the U.K. about 141,460 people with dementia (PWD) live alone. They are at risk of social isolation and inadequate social and medical supervision. The aims of this study were to identify the needs of PWD living alone and to compare the needs of PWD living alone versus those living with others. It was predicted that PWD living alone would have significantly more unmet needs than those living with others.; Methods: 152 PWD were interviewed about their cognitive status and quality of life (QoL); and 128 informal carers were interviewed about the PWD's QoL, social networks, behavioral and psychological symptoms (BPSD), functional status, and services used. For 24 PWD no carer was available. Carers were also interviewed about their own symptoms of depression, anxiety, burden, and satisfaction. Researchers rated PWD's needs. One-third of the PWD (50) were living alone.; Results: PWD living alone had significantly more unmet needs (M = 3.9, s.d. 3.1) than those living with others (M = 2.0, s.d. 2.0) (U = 1578, p < 0.01) particularly in the areas of looking after home (χ2 = 17.23, p < 0.001), food (χ2 = 13.91, p < 0.002), self-care (χ2 = 10.23, p < 0.002) and accidental self-harm (χ2 = 16.51, p < 0.001). The most frequent unmet needs were daytime activities (27, 54.0%), company (26, 52.0%), psychological distress (22, 44.0%), eyesight/hearing (16, 32.0%), and accidental self-harm (16, 32.0%). Conclusion: PWD living alone are a vulnerable group who are at increased risk for unmet social, environmental, psychological and medical needs. This study illustrates the need to identify these individuals and to make provisions among social service agencies to monitor their well-being regularly and provide a higher level of support when needs are identified.

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Assessing multiple sclerosis patients' and carers' views of respite care

Background: People with multiple sclerosis (MS) often require full-time care, which may be provided by informal carers. Respite becomes a vital part of carers' lives allowing temporary relief. Little attention in the literature is given to the people who experience respite care. Aim: The aim of this study was to assess the views of respite care by MS patients and their carers. Method: A cross sectional survey was conducted in Northern Ireland, one questionnaire for patients and another for carers. The lists of two long stay respite units provided the sample for the study, from these 96 patients and 96 carers were approached. A total of 70 patients (73%) and 28 carers (29%) responded. Results: Seventy-one percent of patients used respite care to give their carers a break; 64% of carers used respite to relieve stress. More than half, 64% of patients, enjoyed respite; 6% were angry about requiring respite; 57% of carers felt guilty about using respite. Overall, 81% of patients were satisfied with respite. Almost all carers (96%) stated that respite allowed them to continue caring. Conclusions: Both patients and carers felt respite was a positive and necessary form of care. The study did highlight that activities or outings for patients in respite would be welcomed.

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Patient and carer satisfaction with 'hospital at home': quantitative and qualitative results from a randomised controlled trial

BACKGROUND: 'Hospital At Home' schemes are set to increase in the United Kingdom (UK) in response to the NHS Plan. To date, little detailed work has been done on the acceptability of these schemes to patients and their carers. AIM: To compare Hospital at Home patient and carer satisfaction with hospital care. DESIGN OF STUDY: Pragmatic randomised controlled trial. SETTING: Consecutive patients assessed as suitablefor the Leicester Hospital at Home scheme were randomised to Hospital at Home or one of three acute hospitals in the city. METHOD: Patient satisfaction was assessed two weeks after randomisation, or at discharge if later using a six-item questionnaire. Patients' and carers' views of the services were assessed by semistructured interviews. RESULTS: One hundred and two patients were randomised to Hospital at Home and 97 to hospital. Forty-eight (47%) patients in the Hospital at Home arm and 35 (36%) in the hospital arm completed the satisfaction questionnaire, representing 96% and 85% of those eligible, respectively. Total scores were significantly higher in the Hospital at Home (median = 15) than in the hospital group (median = 12). (P<0.001, Mann-Whitney U-test.) Responses to all six questions favoured Hospital at Home, with all but one of these differences being statistically significant. In the Hospital at Homegroup, 24 patients and 18 of their carers were interviewed; in the hospital group 18 patients and seven of their carers were interviewed. Themes emerging from these interviews were that patients appreciated the more personal care and better communication offered by Hospital at Home and placed great value on staying at home, which was seen to be therapeutic. Patients largely felt safe in Hospital at Home, although some would have felt safer in hospital. Some patients and carers felt that better medical care would have been provided in hospital. Carers felt that the workload imposed by Hospital at Home was no greater than by hospital admission and that the relief from care duties at home would be counterbalanced by the added strain of hospital visiting. CONCLUSIONS: Patient satisfaction was greater with Hospital at Home than with hospital. Reasons included a more personal style of care and a feeling that staying at home was therapeutic. Carers did not feel that Hospital at Home imposed an extra workload.

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Early intervention in psychosis: client and carer perspectives

AIM: To evaluate service users' and carers' views on the early intervention in psychosis service in relation to best-practice guidelines. METHOD: Both groups were sent a questionnaire on their experiences of care provided. RESULTS: The majority responded positively to many items, indicating they thought the team met best-practice guidance. Areas where guidelines were most closely adhered to were: helpfulness of initial contact for carers; service users' improved understanding of problems and ability to cope with difficulties; and satisfaction with amount and location of contact among both groups. Areas for further improvement included: promoting awareness and access to early intervention services; service-user involvement with care plans and promoting optimism for carers. CONCLUSION: Raising awareness, early detection of psychosis and accessing help quickly remain the greatest challenges. Establishing a health promotion strategy in all early intervention teams is crucial. Further training may be necessary for [...]

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A pilot investigation of a brief, needs-led caregiver focused intervention in psychosis

Caregivers play an important role in the treatment and recovery of people with psychosis but they have different needs from service users and can experience significant distress as part of their role. Responding to caregiver needs is not readily identified as being the primary responsibility of clinical services that have limited resources. A small pilot study sought to evaluate the effect and acceptability of providing a brief, needs-led intervention to long-term caregivers of service users with psychosis. A two or three session, interactive and structured intervention, adapted from family work with psychosis, focused on facilitated carer access to reliable information about psychosis, goal setting and adaptive problem-solving. Measures of affect, coping and care-giving impact were completed at baseline and post-intervention. Data for the first four caregivers who attended individual sessions are presented. Post-intervention scores indicate reductions in levels of carer distress and depressive symptoms. Caregivers reported high levels of acceptability and satisfaction. Further studies are required to evaluate the impact of such interventions on a larger number and wider range of caregivers.

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An evaluation of the domiciliary occupational therapy service in palliative cancer care in a community trust: a patient and carers perspective

In the past 20 years there has been considerable growth in the provision of palliative care services. The shift in emphasis from hospice and hospital care to the development of community services has been significant. This enables people to be cared for at home and is in keeping with Government agenda. While this may be beneficial for the patient and fit in with the wishes of the family, it is likely to put heavy demands on the coping resources of individual carers. The views of service users are of paramount importance when discussing service evaluation and patient, family and carer empowerment. This research presents the findings of an evaluation of the domiciliary occupational therapy service provided for patients in the palliative stage of cancer care in North and West Belfast from the perspective of the patients and carers. For the purpose of this study, the palliative stage of cancer care is defined as the point from which the patient is no longer responsive to curative treatment, until death. A sample of 30 patients and their primary informal carers were selected using purposive sampling. A structured interview was carried out with both the patients and their carers to obtain views. Results suggest that although both patients and their carers value the service provided and report high levels of satisfaction, there are gaps identified in service provision and a lack of clear information among patients and their carers about the role of the occupational therapist and the range of services they can provide. There is a need to build upon the good work being done by domiciliary occupational therapists in the area of palliative cancer care and increase education and resources to ensure that a patient-centred, holistic, approach to care is used, addressing both the needs of the patient and their carers.

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Predictors of satisfaction with life in family carers: Evidence from the third European quality of life survey

This research aimed to identify predictors of satisfaction with life in family carers. Evidence from the literature and from the Third European Quality of Life Survey (years 2011–2012) led to the construction of a model which was tested through linear regression analysis. The results corroborate findings from previous studies identified in the literature, showing that married and employed carers with higher education, those with fewer difficulties making ends meet with their household income and those who are healthier have higher levels of satisfaction with life. Carers that participate in physical and social activities and have larger informal social support networks also have higher levels of satisfaction with life. Those reporting difficulties finding time to see a doctor for their own health due to their caregiving role and those experiencing difficulties in accessing formal long-term care have lower satisfaction with life. Policies aiming at balancing care and other activities, such as work, respite and activities in other life spheres, may have an important influence on informal carers’ quality of life

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Psychiatric out-patient clinics for older adults : highly regarded by users and carers, but irreplaceable?

AIMS AND METHOD: The aim of this study was to explore older users' and carers' views of attending out-patient clinics for older adults. A questionnaire was designed to be distributed to all patients attending out-patient clinics for a period of 1 month in January 2007. RESULTS: The response rate for returning the completed questionnaire was 71 per cent, and 95 per cent of these respondents were satisfied with their overall experience of attending out-patient clinics. Although satisfaction levels were high with every aspect of out-patient clinics, 49 per cent preferred the hypothetical option of being seen at home. CLINICAL IMPLICATIONS: The role of psychiatric out-patient departments for older adults merits further research, comparing cost and user/carer acceptability with home or general practitioner surgery-based treatment.

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Alzheimer's disease in real life - the dementia carer's survey

Background: Informal care from relatives provides the foundation of care for people with Alzheimer's disease (AD). It is important to understand the conditions under which carers perform their, often neglected, task. The dementia carer's survey aimed to identify carers' needs, differences between countries with regard to dementia care and the level of satisfaction of carers with utilised services.

Methods: The survey was conducted through Alzheimer Europe's member organisations in France, Germany, Poland, Spain and UK (Scotland). The survey was in the form of a questionnaire, and topics addressed included: demographics of carers and people with AD; time spent caring; disclosure of diagnosis; symptoms prompting diagnosis; diagnostic process; current and most distressing symptoms; carers' information requirements; evaluation of services.

Results: Each country had ∼200 responders. Time spent caring increases with disease severity, and 50% of carers of people with late-stage dementia spent more than 10 h/day caring. Activities of daily living and behaviour were cited as the most problematic symptoms, reported by 68% and 50% of carers, respectively. Provision of information on all aspects of AD was felt to be inadequate, with key services such as home support not available to the majority of carers. Only 17% of carers considered the level of care for the elderly in their country as good.

Conclusions: Further development of services and information provision are required to help carers in their everyday caring, including coping with problematic symptoms influencing areas such as activities of daily living and behaviour. Copyright © 2008 John Wiley & Sons, Ltd.

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Evaluation of a multiprofessional community stroke team: a randomized controlled trial

Objectives: There is inconclusive evidence of the effectiveness of stroke rehabilitation by a community stroke team. The aim was to evaluate a specialist multiprofessional team in a community setting.

Design: Randomized controlled trial.

Setting: Community.

Participants: Stroke patients and their informal carers who were referred to receive rehabilitation from a community stroke team.

Outcome measures: Barthel Index, Extended Activities of Daily Living Scale (EADL), General Health Questionnaire (GHQ-12) by patient and carer, Carer Strain Index (CSI), Euroquol, knowledge of stroke and satisfaction with services six months after recruitment.

Results: There were no significant differences between patients who received rehabilitation from community stroke team (n = 189) and those who received routine care (n = 232) in their independence in activities of daily living, mood, quality of life or knowledge of stroke. The patients in the community stroke team group were significantly more satisfied with the emotional support they had received (p < 0.01). There were no significant differences between the groups in satisfaction with practical help or overall satisfaction. Carers of patients in the community stroke team were under significantly less strain than carers in the routine care group (p < 0.04). Carers of patients in the community stroke team group were significantly more satisfied with their knowledge of stroke (p < 0.01) and were more satisfied overall (p < 0.01).

Conclusions: The patients treated by the community stroke team were more satisfied with the emotional support they received and had equivalent outcomes in terms of independence in activities of daily living and mood. Their carers were under less strain and were more satisfied with their knowledge of stroke recovery, the emotional support they received and overall satisfaction with services. The results support the provision of rehabilitation by a community-based specialist multiprofessional team.

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Carers of older adults' satisfaction with public mental health service clinicians: a qualitative study

Aims and objectives: The purpose of our paper was to explore primary caregivers' experience of the way public mental health nurses and other mental health clinicians responded to them as primary carers of older adults with mental illness.

Background: As populations age, the prevalence of mental illness in older adults will increase and the burden of care placed on family carers will intensify. While family carers are essential to the well-being and quality of life of older adults with mental illness, they frequently experience marginalisation from clinicians.

Design: An interpretative phenomenological analysis approach was used to inform data collection and analysis.

Method: Individual, semistructured, audio-recorded qualitative interviews were conducted with a purposive sample of 30 primary carers.

Results: Two themes were abstracted from the data highlighting carers' contrasting satisfaction with, and delivery of culturally competent care by, clinicians. A third theme, strategies for enhancing carers' experience of care, incorporated carers' suggestions about ways to strengthen their experience of caring.

Conclusion: Although some primary carers had favourable experiences with clinicians, most were dissatisfied and this, in turn, clouded their overall experience of caring.

Relevance to clinical practice: Our findings have implications for the provision of education, ongoing support for, and building the cultural competence of, clinicians about working with carers. They also highlight the need for a change in organisational and practice culture to encompass mutual respect and partnership with carers within the context of the providing person-centred care for carers and older adults with mental illness.

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A Questionnaire to Assess Carers' Experience of Stroke Rehabilitation

PURPOSE: To establish the validity and reliability of a questionnaire measuring the experience of informal carers of patients with stroke through acute and rehabilitation hospital treatment.

METHOD: The settings were 6 stroke units in the United Kingdom. Participants were relatives of patients with stroke. The Stroke Carer Experience Questionnaire (SCEQ) asks about specific elements of care and was constructed using qualitative analyses. Convergent and discriminant validity were assessed by correlations with other questionnaires and variables. Criterion validity was examined by correlations with indices derived from qualitative data. Temporal stability was assessed by correlation with a repeated administration. The performance of the questionnaire was compared with that of the Carer Hospital Satisfaction Questionnaire (Carer HospSat).

RESULTS: Seventy-two (49%) of 147 questionnaires were returned. Test-retest reliability, assessed by a questionnaire mailed 7 days after the first completion, was 0.77. The correlation with the Carer HospSat was 0.57, indicating convergent validity. The SCEQ did not correlate with demographic variables or functional ability, which indicated discriminant validity. Significant correlations with indices derived from carers' qualitative descriptions evidenced criterion validity. The SCEQ detected specific negative experiences among carers with high global satisfaction scores on the Carer HospSat. In general, the SCEQ items were not strongly intercorrelated; only 6% of the intercorrelations were strong to moderate (30.6).

CONCLUSIONS: The SCEQ is preferable to existing questionnaires for carers of patients with stroke, because it has established validity and reliability and assesses service characteristics important to carers. It also identifies experiences in services that elude global satisfaction ratings. It is a promising instrument for identifying service strengths and unmet needs.

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Patient and carer perspectives: a man with inoperable lung cancer

Patient and family perspectives are vital in conceptualising quality of life in the dying (1). The principles of a 'good death' have been established (2,3), and multidimensional frameworks exist for understanding and evaluating end-of-life care (4). However, care often falls short of the ideal, or is offered late. To examine why, we set out to understand the holistic needs of 40 patients dying from lung cancer or cardiac failure and their carers, and to explore to what degree these needs were identified and addressed by service providers (5). We chose qualitative methods as they can best explore such personal and sensitive issues as death and dying (6), and undertook serial interviews for up to one year with patients, their informal carers, and the professional carers identified by the patient as being most involved. Palliative care research calls for innovative patient- and carer-centred qualitative methods to complement quantitative findings (7). Interviews with one patient with lung cancer presented an especially graphic althoughn not atypical account, and these interviews are presented here. Case studies can stimulate the imagination, provoke, and perhaps disturb (8). Medicine retains an educational focus on the individual patient. We follow this tradition by presenting multifaceted data around one person.

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A questionnaire to measure satisfaction with community services for informal carers of stroke patients: construction and initial piloting

Stroke affects 120 000 people each year in the UK and is the most common cause of adult-onset disability. Most stroke patients are cared for at home by informal carers. Support for these carers is provided by the community services, but although single-item measures have shown that there is a relatively high level of dissatisfaction with those services, there is no specific satisfaction measurement instrument. The present study aimed to construct and initially validate a questionnaire to measure carers’ satisfaction with community services for clinical and research purposes. Qualitative interviews with a purposive sample of informal carers of stroke patients identified via stroke unit discharge records gave information about content, context and language. Together with information from the carers’ literature, this formed the basis of the questionnaire. A self-completion questionnaire proved unacceptable to carers with a very poor response rate (20%). Face-to-face interviews were more acceptable, with the questionnaire taking approximately 10 minutes to administer. All carers approached agreed to take part and only three carers dropped out from follow up, all because of reasons not related to the study. Initial validity and reliability testing with a sample of 44 carers identified through stroke groups and general practice showed good correlation with a single-item satisfaction measure (RHO = 0.797), test–retest reliability (RHO = 0.885) and inter-rater reliability (RHO = 0.868), and a high degree of internal consistency (Cronbach's alpha = 0.859). Further validation with larger and more diverse groups of informal carers is needed before the questionnaire can be considered to be a robust and reliable tool. Factor analysis revealed seven factors: information about community support and involving the carer; amount, appropriateness and coordination of services; information about stroke; speed of change and concern about the carer; listening to the carer and being heard; problem management; and confidence in and accuracy of information. These factors have marked similarities to those found in the field of patient satisfaction with community services.

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Caregiving-related needs analysis: a proposed model reflecting current research and socio-political developments

The present authors have developed a model for assessing caregiving-related problems and needs, the Economic, Social, Psychological and Educational Requirements Table (ESPERT). The model was based on an analysis of the international literature concerning caregiving-related problems, and current specific European and Italian legislation, as well as the authors’ own research results (which also permitted them to design a specific instrument for the general assessment of caregivers). This paper describes the socio-psychological and socio-political background prompting the development of the model, the general instrument for the assessment of caregivers and an example of its use in a sample of caregivers of cancer patients. In the example study, 80 caregivers of cancer patients were asked to complete questionnaires evaluating their state and trait anxiety, depressive symptoms, personality traits, and specifically, their neuroticism or emotional instability, caregiving strain and the degree of satisfaction with their lives. In addition to the specific information obtained about this group of caregivers, the present results show that the completion of the ESPERT makes it possible to identify the proportion of subjects at economic, social and emotional risk, and to decide rapidly what kind of resources/interventions can be implemented, bearing in mind the most balanced cost–benefit ratio.

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Effect of combined support for people with dementia and carers versus regular day care on behaviour and mood of persons with dementia: results from a multi-centre implementation study

Background: A previous study in Amsterdam showed that combined family support in the Meeting Centres Support Programme, in which dementia patients and their carers are both supported by one professional staff member, is more effective in influencing behaviour problems and mood of dementia patients living in the community than non-integrated support, such as day care only.

Objective: A multi-centre implementation study tests if similar effects are achieved in other regions of The Netherlands.

Methods: A pretest–posttest control group design was applied. 112 dementia patients who visited psychogeriatric day care in eight community centres across the country and in three nursing homes, and their carers participated in the study. The patients in the experimental group (n = 89) received support from the Meeting Centres Support Programme together with their carers, while the control group (n = 23) received day care only. Behaviour problems (agressive behaviour, inactivity, non-social behaviour) and mood (dissatisfaction, depressive behaviour) were assessed using standardized observation scales. Quality of life was assessed by interviewing the patients.

Results: After 7 months the Meeting Centres Support Programme, compared to regular day care, showed a moderately positive effect on the degree of total behaviour problems (effect size = 0.52), especially on inactivity (effect size = 0.37) and non-social behaviour (effect size = 0.60), a large effect on depressive behaviour (effect size = 0.92) and a moderate effect on self-esteem (effect size = 0.43).

Conclusions: The Meeting Centres Support Programme proves to be more effective than regular day care in influencing behaviour problems, especially inactivity and non-social behaviour, and depressed mood. Participation in the programme also seems to have a positive effect on self-esteem, an important aspect of quality of life. These findings surpass the results of the Amsterdam study and confirm the surplus value of the combined family support in the Meeting Centres Support Programme as compared to regular day care for people with mild to severe dementia. Copyright © 2004 John Wiley & Sons, Ltd.

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CareThere

SAN FRANCISCO and MOUNTAIN VIEW, Calif., Sept 12 /PRNewswire/ --

CareThere, a company dedicated to improving the lives of caregivers of the elderly, disabled and chronically ill and BlueLight.com(TM), an independent e-commerce company formed by Kmart and other investors, today announced a strategic partnership with both on and off-line components. Under this agreement, CareThere and BlueLight.com will partner to leverage the Internet and provide caregivers with comprehensive knowledge and a wide array of e-commerce solutions through BlueLight.com's online shopping destination (www.bluelight.com) and by providing caregivers with BlueLight.com's Totally Free Internet Service. This partnership is the country's first web-based alliance for caregivers with ties to a national brick-and-mortar retailer.

Under the agreement, CareThere will become BlueLight.com's exclusive partner for caregiving. BlueLight.com's Totally Free Internet Service will be promoted as the preferred ISP of CareThere, allowing the caregiving company's members free access to the Internet and the wealth of products, information and services available on both the CareThere and BlueLight.com sites. As part of this outreach effort, BlueLight.com will develop a co-branded web registration page designed especially to help meet the needs of the millions of caregivers across the U.S. Currently, BlueLight.com has more than four million subscribers to its ISP -- this number is expected to reach six million by year-end making BlueLight.com the second largest branded Internet service in the country.

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Relations between social support, appraisal and coping and both positive and negative outcomes in young carers

This study examined a stress/coping model of adjustment in early caregiving. It was hypothesized that better adjustment would be related to higher social support and approach coping, and lower stress appraisals and avoidant coping. One hundred young carers aged 10-25 years completed questionnaires. Predictors included choice in caregiving, social support, stress appraisal and coping. Dependent variables were global distress and positive outcomes (life satisfaction, positive affect, benefits). Correlations supported all hypothesized relations between the stress/coping predictors and adjustment outcomes. Regression analyses showed social support as the strongest predictor of adjustment, whereas coping and choice in caregiving emerged as weaker predictors and stress appraisal was unrelated to adjustment. The stress/coping framework and findings have the potential to inform interventions designed to promote well-being in young carers. Copyright © 2007 SAGE Publications Ltd.

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The caregiving relationship and quality of life among partners of stroke survivors: A cross-sectional study

Background: Since the majority of stroke survivors return home following their stroke, families play a pivotal role in their care. Few studies have addressed both positive and negative aspects of this role or the broader construct of health-related quality of life (HRQL). Furthermore, little consideration has been given to the context of care in terms of relationship quality, and reciprocity. The present study examined the relationships between caregiver quality of life (HRQL), caregiver role, relationship satisfaction, balance and reciprocity in caregivers of partners who had experienced a stroke. Specific hypotheses were made based on equity theory in social relations. Methods: Fifty-six partner caregivers completed a postal survey that included measures of HRQL (SF-36), caregiver role (negative and positive aspects), relationship satisfaction, reciprocity and balance. Data were also collected on the care recipients' quality of life (Stroke Specific Quality of Life scale). Results: Compared to a normative sample, caregivers' HRQL was lower for all SF-36 domains. Care recipient and caregiver age, care recipient quality of life and caregiver role (negative) significantly predicted physical component summary scores on the SF-36, while care recipient quality of life and caregiver role (negative) significantly correlated with mental component summary scores. Relationship satisfaction and intrinsic rewards of caregiving were found to be important predictors of positive aspects of the caregiver role. Caregivers who viewed their relationship as less balanced in terms of give and take had significantly greater caregiver burden than those who viewed their relationship as more equitable. Conclusions:The study highlights the importance of taking a broader approach to examining partner caregiving in the context of stroke, in terms of the caregiving relationship and their influence on the health and well-being of caregivers.

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Impact of home based long term care on informal carers

Background: Well coordinated and integrated home based care is an efficient and cost effective model for providing long term care. There is, however, emerging evidence to suggest that family members pay a price for taking on long term care responsibilities at home.; Objective: This article draws on published literature to provide an overview of the health, economic, and social issues faced by informal carers. The objective is to contribute to the knowledge base of clinicians about the impact of chronic disease and disability on families taking on the care responsibility in a home environment, thereby informing the delivery of best practice.; Discussion: In 2006, there were approximately 632,694 primary carers aged 15 years or more in Australia. These carers collectively have the lowest level of wellbeing scored by any group, and compared to the general population have a significantly higher level of depression, were more likely to experience physical pain, and more likely to experience financial stress. Failure by clinicians to recognise the burden on informal carers may result in long term adverse outcomes for this group that may outweigh the benefits of managing people with disability and chronic illness in the community.

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Satisfaction with services among people with progressive neurological illnesses and their carers in Australia

The current study investigated the types of support networks and services accessed by people with progressive neurological illness, as well as the assessment of the usefulness of these services. The participants were 25 people with multiple sclerosis, 15 people with motor neurone disease, 23 people with Parkinson's disease, and six people with Huntington's disease. Twenty-eight professionals who worked with people with these illnesses and 41 carers of people with these illnesses also were interviewed. The results demonstrate that all of the groups of respondents indicated a strong need for basic services (e.g. home help), as well as specialized services (e.g. support groups). These two services also were identified as the most useful services by all of the groups of respondents. The similarities and differences between the groups, as well as the patients and carers, are examined. These findings demonstrate the importance of providing basic services for people with progressive neurological illnesses.

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An emotive subject: insights from social, voluntary and healthcare professionals into the feelings of family carers for people with mental health problems

Caring for people with mental health problems can generate a whole range of positive and negative emotions, including fear, disbelief, guilt and chaos as well as a sense of purpose, pride and achievement. This paper explores the emotions of family carers from the perspectives of social, voluntary and healthcare professionals. Sixty-five participants were interviewed, the sample included directors, managers and senior staff from social, voluntary and healthcare organisations. Participants were encouraged to talk in detail about their understanding of the emotions of family carers. Findings highlight a rich understanding of the broad spectrum of carer emotions and the huge emotional adjustments that are often involved. Diagnosis was seen to be imbued with negative emotions, such as fear, anger and denial. However, feelings of hopelessness and desolation were often counterbalanced by feelings of hope, satisfaction and the emotional rewards of caring for a loved one. Participants noted a clear lack of emotional support for family carers, with accompanying feelings of marginalisation, particularly during transitions and especially involving young carers as well as ethnic minorities. By way of contrast, carer support groups were suggested by professionals to be a holistic, effective and economical way of meeting carers’ emotional needs. This paper explores the challenge of family carer emotions from the perspective of managers and practitioners and draws out implications for research, policy and practice.

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Job satisfaction and quality of life among home care workers: a comparison of home care workers who are and who are not informal carers

Background: Job satisfaction and quality of life among home care workers who serve simultaneously as informal carers for their own family members have seldom been explored. This study examined how this dual role influences job satisfaction and quality of life by comparing these dual carers with home care workers who do not provide informal care. The study also explored whether the factors related to job satisfaction and quality of life between these two groups were different.

Method: Standardized self-administered questionnaires (Job Satisfaction Survey, the World Health Organization Quality of Life (WHOQOL) scales and various social demographic questions) were administered to the two groups of home care workers in Taiwan from March to April 2009. A total of 1,641 home care workers working in 119 non-government organizations sponsored by 23 local authorities completed and returned the questionnaires.

Results: The two groups did not differ in individual characteristics, work characteristics or job satisfaction. Analysis results indicate that the lowest mean scores for all home care workers were the domains of promotion and pay within their job satisfaction and the domain of environment within their quality of life.

Conclusions: Multiple regression analysis revealed a significant effect of unpaid caregiving in terms of quality of life but not in terms of job satisfaction. Moreover, job satisfaction and quality of life among home care workers were significantly determined by both their work conditions (e.g. travelling time, salary and length of work experience) and personal variables (e.g. age, family income and family support).

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Components of the difficulties, satisfactions and management strategies of carers of older people: a principal component analysis of CADI-CASI-CAMI

Objectives: To perform a psychometric evaluation of the Carers Assessment of Difficulties Index, Carers Assessment of Satisfactions Index and the Carers Assessment of Managing Index (CADI-CASI-CAMI).

Method: Data was collected in three European countries from informal carers of older people (n = 295) via a common protocol. Carers completed: (a) a questionnaire containing items on demographics and caregiving characteristics and (b) the CADI-CASI-CAMI indices. Principal component analysis of the CADI-CASI-CAMI indices was followed by internal consistency analysis of emergent components. Scales derived by summing items loading on the components were analysed for their association with the demographic and caregiving characteristic variables.

Results: CADI produced six internally consistent and interpretable components, CASI five and CAMI seven. Subscales derived from the components were significantly associated with the demographic and caregiving characteristic variables, providing initial support for construct validity.

Conclusion: The CADI-CASI-CAMI indices are recommended as an assessment tool for in-depth work with family carers of older people and as a research tool for large-scale studies of family care.

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Current perceptions of respite care: experiences of family and informal carers of people with a learning disability

Access to regular, high-quality respite care has a beneficial impact on a carer’s ability to fulfil their caring role, but provision varies widely. The current study aims to report family and informal carers’ perceptions of respite care services offered to them by their local authority. A mixed method, triangulated design, yielded both quantitative and qualitative data. Members of a parent/carer federation were sent a questionnaire which included a section on ‘respite care’; 151 of 647 responded. Two focus groups were held with 15 carers who had previously completed the questionnaire. The majority of carers reported that their respite needs were not being met. Unmet needs were hampered by the lack of information regarding criteria for access to respite. Discrepancies were evident between professionals and carers on a shared definition of respite care. Carers were unsure of exactly which activities constituted respite care and for whom the service was being provided.

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Is NHS Direct meeting the needs of mental health callers?

Background: NHS Direct is a new service that offers 24-hour advice from trained nurses. The National Service Framework for Mental Health and the National Strategy for Carers both mention NHS Direct as an important source of support for people with mental health problems. Aims: This paper reports findings from an evaluation of the Department of Health's NHS Direct mental health initiative. This initiative was established to ensure that NHS Direct can meet the needs of callers with mental health problems by offering additional training to all staff and improving the database of mental health services. Method: The findings reported here are based on routine computer data provided by 12 out of 17 NHS Direct sites, 552 data forms completed by nurse advisers from the 17 sites, and 111 questionnaires administered over the telephone with callers to the 17 sites. Results: Mental health calls accounted for 3% of NHS Direct's workload, although these calls were often longer and more complex than other calls. The majority of callers to the service were in touch with other services for their mental health problems (59%), typically their GP. Most callers had 'moderate' mental health problems, as indicated by the Global Assessment of Functioning Scale. Generally callers were satisfied with the service they received, although satisfaction was lower in some areas than previous studies of NHS Direct. Conclusions: Improvements could be made in the mechanisms for referring callers on to other services, and training to increase nurse advisers' knowledge of mental health problems.

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End-of-Life Care in Italian Hospitals: Quality of and Satisfaction With Care From the Caregivers' Point of View—Results from the Italian Survey of the Dying of Cancer

Context: A number of studies have highlighted the poor quality of end-of-life (EOL) care provided in hospital settings, leading to a reduction in the quality of EOL care and increase in patient and caregiver dissatisfaction levels.

Objectives: The aims of this study were the evaluation of the prevalence of major symptoms, treatment, outcomes, information, and care provided to dying cancer patients in Italian hospitals; and an analysis of clinical and socio-demographic factors associated with caregiver satisfaction with the health care provided.

Methods: This is a mortality follow-back survey of 2,000 cancer deaths representative of the country. Caregivers were interviewed about patients' experiences by using a tailored version of the View of Informal Carers—Evaluation of Services questionnaire.

Results: Valid interviews were obtained for 84% (n=364) of the cancer patients who died in hospital. Most Italian cancer patients dying in hospital suffered from a number of untreated or poorly treated symptoms, and only a few reported an acceptable control over physical suffering. Moreover, only two-thirds of patients and one-third of caregivers received basic information on therapies and care. About one-third of the caregivers expressed dissatisfaction with the health care received. The probability of being satisfied was more likely for caregivers of patients living in the north of Italy; caregivers of patients who had not experienced or were only slightly distressed by fatigue; and caregivers who were generally satisfied with hospital facilities and when the health care professionals had provided appropriate information to both patients and caregivers.

Conclusion: This study revealed poor quality of EOL care in Italian hospitals, with almost one-third of the caregivers expressing their clear dissatisfaction. A national policy is, therefore, urgently called for to improve the quality of EOL care in Italian hospitals.

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Relatives in end-of-life care - part 1: a systematic review of the literature the five last years, January 1999-February 2004

Aim. To review systematically research conducted during the past five years focusing on the relatives' situation and needs in end-of-life care. Background and aim. That relatives make a large contribution in the care of the dying is well-known. In this situation, relatives often have to solve many new practical problems in the care as well as dealing with the sorrow of both themselves and the dying person. In recent years, palliative care has been developed in many countries and many new studies have been carried out. Methods. A systematic search of the literature was performed in the CINAHL and Medline databases. Of the 94 papers analysed, there were 59 qualitative and 35 quantitative studies with differing designs. The studies were carried out in 11 countries and were published in 34 different journals. Results. The results were categorized in two main themes with several subthemes: (1) being a close relative – the situation: (i) exposed position – new responsibility, (ii) balance between burden and capacity and (iii) positive values; (2) being a close relative – needs: (i) good patient care, (ii) being present, (iii) knowing and communicating and (iv) support from and trusting relationship with the professional. The relative's feelings of security and trust in the professional were found to be of great importance. 

Conclusion.  More than twice as many studies had a descriptive/explorative design, which is of importance in the assessment of evidence. However, different studies complement one another and in summary, it can be said that analytic evidence is unequivocal: good patient care, communication, information and the attitude of the professional are of decisive importance regarding relatives' situation. These results are also in accord with earlier review studies.

Relevance to clinical practice.  Staff members have a great deal of responsibility for assuring that the patient feels as good as possible, facilitating relatives’ involvement based on the family's wishes and limiting the stress and difficulties experienced by the family. The results showed that the relative's satisfaction could depend on the attitude of the professional as well as on good communication, good listening and good information. This can also be viewed as a prerequisite for the professional to get to know the family and to provide ‘care in the light’.

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Does the organisational model of dementia case management make a difference in satisfaction with case management and caregiver burden? An evaluation study

Background: In the Netherlands, various organisational models of dementia case management exist. In this study the following four models are distinguished, based on differences in the availability of the service and in the case management function: Model 1: the case management service is available from first dementia symptoms + is always a separate specialist function; Model 2: the case management service is only available after a formal dementia diagnosis + is always a separate specialist function; Model 3: the case management service is available from first dementia symptoms + is often a combined function; Model 4: the case management service is only available after a formal dementia diagnosis + is often a combined function. The objectives of this study are to give insight into whether satisfaction with dementia case management and the development of caregiver burden depend on the organisational model.; Methods: A survey was carried out in regional dementia care networks in the Netherlands among 554 informal carers for people with dementia at the start of case management (response of 85 %), and one year later. Descriptive statistics and multilevel models were used to analyse the data. 

Results: The satisfaction with the case manager was high in general (an average of 8.0 within a possible range of 1 to 10), although the caregiver burden did not decrease in the first year after starting with case management. No differences were found between the four organisational models regarding the development of caregiver burden. However, statistically significant differences (p < 0.05) were found regarding satisfaction: informal carers in the organisational model where case management is only available after formal diagnosis of dementia and is often a combined function had on average the lowest satisfaction scores. Nevertheless, the satisfaction of informal carers within all organisational models was high (ranging from 7.51 to 8.40 within a range of 1 to 10).

Conclusions: Organisational features of case management seem to make little or no difference to the development in caregiver burden and the satisfaction of informal carers. Future research is needed to explore whether the individual characteristics of the case managers themselves are associated with case management outcomes

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Stressors and life goals of caregivers of individuals with disabilities

Caregivers of individuals with disabilities can experience stress as they manage care giving responsibilities while they attempt to balance family, work, and the satisfaction of their personal goals. In this pilot study, 31 caregivers of individuals with a variety of disabilities completed a quantitative-qualitative survey. A statistically significant relationship was found between the age and severity of disability of the family member receiving care, the length of time care had been provided, the educational level and the relationship of the caregiver to the family member and reported feelings of optimism, humbleness, quality of family relationships, financial concerns, loss of control, and hope. When life goals were probed, the most common reported were achieving financial stability, having a strong, healthy family, and experiencing happiness. The implications for supporting caregivers and their families are discussed. [Journal abstract]

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Using the Senses Framework to achieve relationship-centred dementia care services

This article describes the development of a new service for people with dementia and their carers in a large post-industrial city in the north of England, UK. The service arose in response to the perceived inadequacies of existing respite care provision and has proved very successful in meeting the needs of people with dementia and their family carers, and in providing high levels of job satisfaction for staff. The success of the initiative can be understood using the Senses Framework and relationship-centred care as an analytic lens to identify key attributes of the service. The article also discusses implications for the development of support services more generally.

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Family care for immigrants with dementia: the perspectives of female family carers living in the Netherlands

BACKGROUND: The prevalence of dementia is increasing among non-western immigrants. It is known that family care is provided relatively often among immigrant groups. Until now, however, relatively little was known about how relatives of people with dementia in the immigrant communities perceive family care. This study therefore focuses on describing the perspectives of female Turkish, Moroccan and Surinamese Creole family carers in the Netherlands about providing family care to a close relative with dementia.

METHODS: Forty-one individual interviews and six focus group interviews (n=28) were held with female Turkish, Moroccan and Surinamese Creole family carers who are looking after a close relative with dementia. A qualitative analysis of the interviews has been carried out, supported by the software MaxQda.

RESULTS: Related to their cultural and religious backgrounds, female family carers with Turkish, Moroccan or Surinamese Creole origins see family care as a task that they should carry out with respect and love. They feel that family care is superior to professional care and that it is principally a task for women. If men do have a role in family care, then it generally covers non-physical aspects. Despite the fact that the family carers interviewed listed aspects that make caring for a close relative with dementia difficult, they do say that they get a great deal of satisfaction from providing this care. In Turkish and Moroccan families in particular this type of care leads to more recognition and appreciation of the daughter or daughter-in-law who is giving it.

CONCLUSION: Family carers of Turkish, Moroccan or Surinamese Creole origin derive a great deal of satisfaction from giving family care to a relative with dementia. This fulfilment largely outweighs the burden of care. Professional support or information for these family carers can be improved by also focusing on the positive aspects of providing family care instead of an exclusive focus on reducing the burden.

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Leisure satisfaction and psychiatric morbidity among informal carers of people with spinal cord injury

Study design: Cross sectional survey. Objective: To examine the nature and prevalence of common mental disorders among informal carers of people with Spinal Cord Injury (SCI) and the association with their leisure satisfaction. Setting: Christian Medical College, Vellore, Tamilnadu, India.

Methods: A cross-sectional survey of informal carers of people SCI at the Department of Physical Medicine and Rehabilitation. Fifty-three informal carers of people with SCI were interviewed using the Revised Clinical Interview Schedule to assess psychiatric morbidity, and using the Leisure Satisfaction Scale to measure leisure and contentment. Data on carers with psychiatric morbidity were compared to those without common mental disorders using univariate and multivariate statistics.

Results: Study reported a high morbidity (53%), with most consistent diagnoses of depression and anxiety. Carers who were spouses, women, currently married and those with lower education had greater psychiatric morbidity and lesser leisure satisfaction, even after adjusting for age and education using logistic/linear regression. Age, occupation, residence, socioeconomic status, type and duration of SCI were not associated with either morbidity or leisure satisfaction.

Conclusion: Many carers of people with SCI suffer from psychiatric morbidity and also have low scores on leisure satisfaction.

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Is socially integrated community day care for people with dementia associated with higher user satisfaction and a higher job satisfaction of staff compared to nursing home-based day care?

Objectives: To investigate whether community-based (CO) day care with carer support according to the proven effective Meeting Centres Support Programme model is associated with higher satisfaction of people with dementia (PwD) and their informal caregivers (CG) and with a higher job satisfaction among care staff compared to traditional nursing home-based (NH) day care.

Method: Data were collected in 11 NH day care centres and 11 CO day care centres. User satisfaction of PwD and CG was evaluated in the 11 NH day care centres (nPwD = 41, nCG = 39) and 11 CO day care centres (nPwD = 28, nCG = 36) with a survey after six months of participation. Job satisfaction was measured only in the six NH day care centres that recently transformed to CO day care, with two standard questionnaires before (nSTAFF = 35), and six months after the transition (nSTAFF = 35).

Results: PwD were more positive about the communication and listening skills of staff and the atmosphere and activities at the CO day care centre. Also, CG valued the communication with, and expertise of, staff in CO day care higher, and were more satisfied with the received emotional, social and practical support. After the transition, satisfaction of staff with the work pace increased, but satisfaction with learning opportunities decreased.

Conclusion: PwD and CG were more satisfied about the communication with the staff and the received support in CO day care than in NH day care. Overall job satisfaction was not higher, except satisfaction about work pace.

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Primary caregivers' satisfaction with clinicians' response to them as informal carers of young people with first-episode psychosis: a qualitative study

Aim.  To explore first-time primary caregivers’ experience of the way mental health nurses and other mental health clinicians respond to them as carers of young people with first-episode psychosis.

Background.  Caregivers have a key role in supporting family members/relatives with mental illness, but their contribution is undervalued frequently by mental health nurses and other mental health clinicians.

Design.  Qualitative interpretative phenomenological analysis.

Method.  A qualitative interpretative design was undertaken, using semi-structured, audio-recorded interviews. Twenty primary caregivers were recruited through Orygen Youth Health, a first-episode psychosis centre in Melbourne. Interpretative phenomenological analysis was used to identify themes in the data.

Results.  Two competing themes were identified in the data, highlighting caregivers’ contrasting experience with mental health nurses and other mental health clinicians. First, most clinical staff were approachable and supportive. Second, several carers felt their contribution was undervalued by some clinical staff. This was as a consequence of being excluded from clinical deliberations because of clinical staffs’ concerns and young people’s requests about maintaining confidentiality regarding treatment, as well as carers feeling their role was not taken seriously by clinical staff.

Conclusion.  First-time primary carers have positive and negative experiences with first-episode psychosis mental health nurses and other clinicians, and these competing events are interrelated. Experiences are affected directly by the manner they are treated by clinical staff and this may, in turn, affect carers’ commitment to caring, the way they engage with clinical staff on subsequent occasions and towards the first-episode psychosis service generally.

Relevance to clinical practice.  Greater appreciation is needed of the contribution, experience and difficulties caregivers encounter in their role and in engaging with mental health nurses and other clinicians. Additional training is required for clinical staff in family interventions and to familiarise them with legislation and mental health policies relating to carers.

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Experiencing dementia: evaluation of Into Dementia

Background: Most persons with dementia in the Netherlands live at home, where they are cared for by informal carers such as family members or friends, who offer this care unpaid. Their care-task poses a high burden on these informal carers, increasing the risk of health problems and social isolation. Many informal carers indicate they want more information on the behaviour of those they care for.

Aim: To develop and evaluate Into D’mentia, a simulation set in a living kitchen in which visitors experience a day in the life of someone with dementia. During this ‘day’, modern techniques such as sensors and projections, simulate the limitations of having dementia. This intervention is evaluated on usefulness and user friendliness, and on its effect on empathy, attitudes towards dementia, coping, carer burden, person-centered care capabilities and care satisfaction.

Research: Nine informal carers and 23 care professionals took part in the research into the Into D’mentia simulation. Before and after their visit, they filled in several questionnaires, with, among others, their opinion on the usefulness and user friendliness of this experience.

Results: Participants found Into D’mentia a highly useful and user friendly development. They indicated that the simulation offered good insight in the life of someone with dementia, and that they could offer better care thanks to this experience. Participants also indicated that they often thought back on their experiences in the simulation, in order to better understand the behaviour of people with dementia.

Conclusion: Into D’mentia offers a unique, accessible way to experience the limitations dementia has on daily life. Users indicate that it is a useful and user friendly innovation. Into D’mentia appears to be a suitable method to support informal and professional caregivers.

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The influence on carer wellbeing of motivations to care for older people and the relationship with the care recipient

This paper reports an analysis of the relative influence of work-related, care-related and personal factors on carer outcomes among 204 working female carers. To examine the importance of personal factors, the ‘Motivations in Elder Care Scale’ (MECS) and the ‘Relationships in Elder Care Scale’ (RECS) were developed. In a qualitative pilot study, interviews with working-age carers were drawn on to form the items for inclusion. The MECS included items for external pressures to care, e.g. guilt, the older person's expectation of care, and perceived disapproval of others, and for internal desires to adopt the caring role, e.g. carer's resistance to other forms of care, living up to one's principles and caring nature. Psychometric tests revealed that two subscales had greater reliability, the EXMECS (extrinsic motivations to care) and the INMECS (intrinsic motivations). The RECS included both positive items, e.g. respect, admiration for the older person, and lack of generational differences, and negative relationship items, e.g. struggle for power, and older person's resistance to caring efforts, and had good reliability. Measures of carer stress and carer satisfaction were included as outcome variables. Multiple regression analyses showed that the RECS and the MECS were the most significant predictors of carer outcomes. Greater extrinsic motivations to care and poorer quality of the relationship with the older person were the most significant predictors of carer stress. Better relationship quality and greater intrinsic motivations to care were the most significant predictors of carer satisfaction.

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User and carer involvement in mental health services: from rhetoric to science

User or carer involvement is often seen as intrinsically worth while; but if such involvement is a good thing in itself, it would not matter whether changes resulted from it. However, most people argue for user or carer involvement because they think some useful change will follow as a consequence. Being involved can benefit users or carers both personally (for example, by empowering them or increasing their social contacts) and practically (for example, by enabling them to earn money or learn new skills). Improvements can be made to services as a result of involvement, leading to better relationships between users or carers and staff, and perhaps increased job satisfaction among those working in the service. Targeting services to users' needs may improve the cost-effectiveness of those services.

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Care Direct: an intergrated route to help for older people

Reports on an evaluation of Care Direct, a service launched by the Department of Health piloted in six areas offering information and support to people over 60 and their carers principally through a telephone help-line service. A survey of 600 callers was carried out during 2002. The analysis focuses on the characteristics of users and callers experience of using the service. Concludes that the experience of the first year has been positive, with the service meeting its targets in terms of range and volume of activity, and achieving satisfaction with callers. Highlights future challenges for the service including: whether the service is sufficiently focused on enabling; how well it has succeeded at co-ordinating across services; and improving public awareness and access.

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Determinants of satisfaction with care and emotional distress among informal carers of demented and non-demented elderly patients

Little research has been carried out into determinants of both carer satisfaction in the caregiving role and how these compare with determinants of emotional distress among carers. Principal informal caregivers to 91 patients with dementing or non-dementing disorders were identified from consecutive referrals to community psychiatric nurses in an old age psychiatry service. Clinical, demographic, service and carer satisfaction variables were recorded. Emotional distress in carers was measured with the 28 item General Health Questionnaire. Dissatisfaction with caregiving was weakly correlated with emotional distress (r=0.21, p=0.042). Multiple linear regression revealed two variables which were associated with greater dissatisfaction with the caregiving role, the carers' overall rating of the degree of difficulty in the caregiving role (p<0.001) and younger age of the carer (p=0.014). Emotional distress was independently associated with the degree of difficulty in the caregiving situation (p<0.001) and inversely with the dependency of the patient on the care (p=0.038). The caregiver's assessment of the difficulty in caregiving was associated with both carer dissatisfaction and emotional distress in the caregiving role. While emotional distress was associated with the perception that the patient could do more for themselves, carer dissatisfaction was associated with younger age of the carer. There were competing demands on younger carers, particularly work. Copyright © 2000 John Wiley & Sons, Ltd.

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Pilot study of an exercise intervention suitable for older heart failure patients with left ventricular systolic dysfunction

Background: Most studies of exercise training for heart failure have been conducted on relatively young patients with little comorbidity. Such programmes are unsuitable for the majority of older frail heart failure patients.

Aims: To test the acceptability and tolerability of an outpatient exercise programme in older heart failure patients with comorbid disease.

Methods: 17 patients aged 70 years and over with left ventricular systolic dysfunction attended twice weekly group exercise classes for 12 weeks, focussing on endurance exercise and everyday functional tasks. Outcome measures were proportion of sessions attended; adverse events and reasons for non-attendance; six-minute walk, accelerometry, hospital depression and anxiety score, Guyatt quality of life scale, carer strain and satisfaction scores.

Results: 83% of sessions were attended; 80% of subjects attended at least 80% of allocated sessions. One adverse incident occurred in 324 person-sessions. Encouraging improvements were seen in six minute walk test (+ 19 m, p = 0.14) and in Functional Limitation Profile score (− 82 points, p = 0.02). 50% of informal carers attended at least one session. No increase in carer strain was noted.

Conclusions: Twice-weekly group exercise focussing on aerobic endurance and everyday functional tasks was acceptable and well-tolerated in this patient group.

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Dying at home: evaluation of a hospice rapid-response service

Various studies suggest that there is a preference among patients, professionals and the public for death to occur at home (Dunlop et al, 1989; Townsend et al, 1990; Hinton, 1994). Data indicates that some patients are denied the opportunity to exercise choice in the place of death. In areas where palliative rapid-response teams have been available more people have been able to die at home. This article presents the findings of an evaluation of a hospice rapid-response service in the Highlands of Scotland, which was designed to respond to the needs of people in crisis facing death. The study was designed to produce a rigorous and comprehensive description of a newly–operational service at the pilot stage. It reflects not only the views of the professionals involved but also focuses on the views of informal carers. Seventeen patients were referred to the rapid-response service in its first year of operation between April 1998 and March 1999. The service has shown some success in enabling patients to die at home and satisfaction with the service is high among professionals and lay carers.

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Health-related quality of life among informal caregivers assisting people with multiple sclerosis

Objective: To identify factors affecting the health-related quality of life (HRQOL) of informal caregivers assisting people with (multiple sclerosis) MS who have greater functional impairment.

Methods: Data were collected in a national survey of 530 people who provided informal care to people with MS. Multiple linear regression models analyzed these data.

Results: Poorer overall health for the person with MS, stronger agreement by caregivers that care giving was burdensome or emotionally draining, and the caregiver's need for mental health counseling in the past 12 months were associated with lower mental dimensions of HRQOL for the informal caregiver. Greater caregiver satisfaction with the access the person with MS had to MS-focused care was associated with higher mental dimensions of HRQOL among caregivers.

Conclusions: Increasing access to MS-focused care could improve not only the health of people with MS, but also improve the mental dimensions of caregiver HRQOL. Our findings highlight the importance of addressing the mental health needs of informal caregivers assisting people with MS.

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Identifying needs, burden, and distress of carers of people with Frontotemporal dementia compared to Alzheimer's disease

The literature on carers of people with Frontotemporal dementia (FTD) is negligible compared to the vast literature on carers of people with Alzheimer’s disease (AD), and little research has compared the two groups. Research has mainly focused on identifying the behavioural characteristics of people with FTD or AD. The impact of these behaviours on the psychological well-being of carers of people with FTD is relatively unexplored. This study investigated the needs, burden, and extent of depression and anxiety in carers of people with FTD (n = 30) compared to carers of people with AD (n = 30). Findings indicated that needs of carers of people with FTD were significantly higher than those of the carers of people with AD. The elevated needs were related to the younger onset of FTD, financial dissatisfaction, typical FTD characteristics, and access to appropriate services, information and support. Results also suggested that female carers were more likely to report a greater severity and impact of disruptive symptoms associated with FTD. No significant differences were found between the two groups on carers’ levels of burden, depression or anxiety. In order to address the needs of carers of people with FTD, we recommend specific educational and support programs, raising community awareness and understanding, and tailoring existing domiciliary services and activities for people with FTD.

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Building on the benefits: assessing satisfaction and well-being in elder care

One hundred interviews were conducted with primary caregivers, with 63 held in the home of the caregiver and the remainder conducted in a location convenient to the caregiver. Each participant completed the Caregiver Well-Being Scale (CWB), the Caregiving Uplifts Scale (CUPL), the Caregiving Satisfaction Scale (CSS), and the Center for Epidemiologic Studies Depression Scale (CES-D). Scores on the CWB, the CUPL, and the CSS were significantly higher for caregivers for elders with a primarily physical (e.g., heart disease) rather than a primarily cognitive impairment (e.g., dementia); indicating greater perceived caregiver benefits based on type of care recipient impairment. Little evidence of depressive symptoms was found in either group of caregivers. These findings advance previous research by indicating that caregivers experience satisfaction in their role and the potential for personal fulfillment even when faced with challenging circumstances. The validation of positive experiences and the impact that positive appraisals have on levels of depression are discussed.

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Older carers in the UK: who cares?

Long-term care in the UK relies heavily on informal and unpaid carers. Statistical data regarding the number of carers in the 2001 Census compared with the 2011 Census identify an increase of around 600 000 carers. It is also significant that many of these carers are themselves in their late middle age. The reasons for taking on the caring role are varied, but there are significant potential physical, mental and financial issues associated with taking on the caring role. Positive benefits in terms of support provision for the carer do exist, but support services across the UK are variable. This article outlines the problems that may be faced by carers and provides directions for future developments and research into how this situation might be improved.

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Caregiver perceptions of accomplishment from assisting people with multiple sclerosis

Objectives: Identify factors of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving assistance that are associated with perceptions of caregiver accomplishment. Methods: National data were collected in a telephone interview survey of 530 informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with perceptions of caregiver accomplishment among 442 of these informal caregivers (caregivers providing all data in their survey responses needed for the regression model). Results: We found that age of the person with MS and duration of caregiving measured by the number of hours per week the caregiver assisted the person with MS were significantly linked to positive perceptions of accomplishment. Conversely, the caregiver’s perception that assisting the person with MS was emotionally draining, a spousal relationship, and caregiver education levels were significantly associated with negative perceptions of accomplishment. Conclusions: Health professionals treating people with MS and their caregivers should be sensitive to the impact caregiving has on the emotional needs of caregivers and to the unique support needs of spousal caregivers. Health practitioners also should be sensitive to the variety of benefit-finding themes expressed by caregivers to facilitate the caregivers’ efforts to discover gains in their experiences assisting people with MS, such as perceptions that caregiving provides a sense of accomplishment.

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Supported housing for people with Down's syndrome

There has been limited research on the attitudes of family carers and the part they play in helping people with a learning disability choose accommodation. A postal questionnaire was sent to family carers of people with Down's Syndrome, to identify their attitudes to supported living, their experience of the application process, and the support they provided to residents. It was found that main family carers of people with Down's Syndrome in supported living were generally satisfied with the housing and support provided, particularly with respect to activities of daily living. There was less satisfaction with the help received with managing finance and employment. There had been a mean of 2 years delay between application and securing accommodation. The large number of people providing care at home who wished their family-member to move into supported living suggests that there is a large unmet need for this type of accommodation. Almost all family carers continued to provide support after participants moved into supported living, particularly with more complex tasks such as financial management, and with responding to crises and ill-health. This indicates that people with a learning disability in supported living who do not have active contact with their family may be vulnerable financially and less likely than others to receive help at times of crisis. The proportion of residents in supported living who experience such problems will increase as family carers die or otherwise become too infirm to continue to provide support.

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An exploration looking at the impact of domiciliary and day hospital delivery of stroke rehabilitation on informal carers

Objectives: To explore the impact of two methods of post-hospital stroke rehabilitation on both carers' perceptions of the health services offered and their quality of life.

Setting: East Dorset Health Authority.

Subjects: Forty-six informal carers were recruited from a sample of 106, initially identified from stroke patients participating in a larger randomized controlled trial.

Design: Qualitative methods.

Methods: Semi-structured interviews were used at baseline and six months to explore carers' perception of a good therapy, the advantages and disadvantages of the different services and their fulfilment with the services. In-depth thematic analysis was carried out to explore the impact of the two different methods of service delivery on carers' quality of life.

Results: Day hospitals provided carers with respite opportunities, whilst domiciliary stroke teams provided carers with better educational opportunities to be involved in therapy. No qualitative difference was found in the impact that the different services had on carers' quality of life, which were influenced by factors such as the degree of disruption that caring had on their lives, the loss of a shared life and the availability of social support. Ultimately, carers saw the services as providing benefit for survivors and not themselves.

Conclusions: Domiciliary stroke teams provided informal stroke carers with skills that could help improve postdischarge stroke rehabilitation amongst stroke survivors. Informal carers also benefited from the respite elements of day hospital. A mixed model using both domiciliary care and day hospital care, could provide carers with the benefits of education, convenience and respite.

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Predicting mental health outcomes in female working carers: a longitudinal analysis

This study investigated the factors contributing to psychological distress and positive affect over time in female working carers of older people. Questionnaires (including measures of work-related, care-related, interpersonal and psychological aspects of working and caring) were distributed to 275 female working carers in the UK, the majority of whom were working as nurses in the National Health Service. In cross-sectional analyses, higher work stress and work demands predicted higher psychological distress among respondents. Better carer health, lower external pressures to care and higher work satisfaction predicted greater positive affect. The combined effects of greater work stress and work demands also predicted higher levels of psychological distress at follow-up (after one year), whereas younger age and lower work stress predicted greater positive affect over time. We conclude that more stressful and demanding work roles appear detrimental to carers’ mental health, while lower stress occupational roles may be beneficial, providing satisfaction and fulfilment outside of the caring role. Older female carers may be especially at risk of psychological distress, possibly due in part to increasing health problems of their own.

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Changes in sexuality and intimacy after the diagnosis and treatment of cancer: the experience of partners in a sexual relationship with a person with cancer

Changes in sexuality and intimacy after cancer were examined using open-ended questionnaire responses with 156 informal carers who were partners of a person with cancer. Interviews were conducted with 20 participants to examine changes in depth. Seventy-six percent of partners of a person with "nonreproductive" cancer types and 84% of partners caring for a person with cancer involving "reproductive" sites reported an impact on their sexual relationship. Cessation or decreased frequency of sex and intimacy was reported by 59% of the women and 79% of the men. Renegotiation of sexuality and intimacy after cancer was reported by only 19% of the women and 14% of the men. Reasons for changes to sexuality after cancer were the impact of cancer treatments, exhaustion due to caring, and repositioning of the person with cancer as a patient, not a sexual partner. Changes to sexuality were associated with reports of self-blame, rejection, sadness, anger, and lack of sexual fulfillment. Positive consequences of changes included accepting the changed sexual relationship and having increased closeness and intimacy. These findings reinforce the need to acknowledge the sexual needs of partners as well as people with cancer, by healthcare professionals working in cancer and palliative care.

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The value of informal care: a further investigation of the feasibility of contingent valuation in informal caregivers

Including informal care in economic evaluations is increasingly advocated but problematic. We investigated three well-known concerns regarding contingent valuation (CV): (1) the item non-response of CV values, (2) the sensitivity of CV values to the individual circumstances of caring, and (3) the choice of valuation method by comparing willingness-to-pay (WTP) and willingness-to-accept (WTA) values for a hypothetical marginal change in hours of informal care currently provided.

The study sample consisted of 1453 caregivers and 787 care recipients. Of the caregivers, 603 caregivers (41.5%) provided both WTP and WTA values, 983 (67.7%) provided at least one. Determinants of non-response were dependent on the valuation method; primary determinants were education and satisfaction with amount of informal care provided. Caregivers' mean WTP (WTA) for reducing (increasing) informal care by 1 h was €9.13 (10.52). Care recipients' mean WTA (WTP) for reducing (increasing) informal care by 1 h was €8.88 (€6.85). Values were associated with a variety of characteristics of the caregiving situation; explanatory variables differed between WTP and WTA valuations. The differences between WTP and WTA valuations were small.

Based on sensitivity CV appears to be a useful method to value informal care for use in economic evalations, non-response, however, remains a matter of concern. Copyright © 2009 John Wiley & Sons, Ltd.

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Barriers to access and minority ethnic carers' satisfaction with social care services in the community: a systematic review of qualitative and quantitative literature

As populations age, the numbers of carers overall and numbers of carers from minority ethnic groups in particular are rising. Evidence suggests that carers from all sections of the community and particularly carers from minority groups often fail to access care services. This may relate to barriers in accessing services and service dissatisfaction. The aim of this systematic review was to identify and summarise minority ethnic carers' perceptions of barriers to accessing community social care services and their satisfaction with these services if accessed. The following databases were searched from their start until July 2013: Social Care Online, Social Policy and Research, Scopus, PsychINFO, HMIC, ASSIA, MEDLINE, Embase, CINAHL Plus and AMED. Thirteen studies met the inclusion criteria. Most investigated either barriers to access or satisfaction levels, although three explored both. Only 4 studies investigated minority ethnic carers' satisfaction with social care, although 12 studies reported perceived barriers to accessing services. Few studies compared minority ethnic carers' perceptions with majority ethnic groups, making it difficult to identify issues specific to minority groups. Most barriers described were potentially relevant to all carers, irrespective of ethnic group. They included attitudinal barriers such as not wanting to involve outsiders or not seeing the need for services and practical barriers such as low awareness of services and service availability. Issues specific to minority ethnic groups included language barriers and concerns about services' cultural or religious appropriateness. Studies investigating satisfaction with services reported a mixture of satisfaction and dissatisfaction. Barriers common to all groups should not be underestimated and a better understanding of the relationship between perceived barriers to accessing services and dissatisfaction with services is needed before the experiences of all carers can be improved.

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Caregiving and Family Support Interventions: Crossing Networks of Aging and Developmental Disabilities

This scoping review addressed the following questions: (a) What types of caregiver interventions are being done in both aging and developmental disability research? (b) How are these interventions similar and different? (c) What kinds of outcomes do these interventions have? (d) What innovative approaches are these interventions using? and (e) What can each field (developmental disabilities and gerontology) learn from the other based on this