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Carers needs

The following resources examine carers' needs for support in caring.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

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).
 

People with learning disabilities and/or autism and their carers getting older: Confronting a Looming Crisis

Increased longevity means that an increasing proportion of people living with a learning disability are aged 45 and over and are transitioning into older age/retirement. It also means that ageing family members are increasingly playing an extended caregiving role into later life. A small scale study was carried out in the New Forest, Hampshire during 2018-19. Twenty-one older carers (5 were male) were interviewed about their experiences of caring for their older adult family members with learning disabilities and/or autism. The average age of the carers was 75 though 20% of the sample were over 80 years old.

Key findings:

Older carers are struggling to continue to care for their loved ones. Four main themes described their struggles:

1. Transition to retirement was felt to be a misnomer in the face of continuing responsibilities and duties to care and/or manage care. Little respite was available to take a break, take stock, or just do the things that most other ‘retired people’ do.

2. The Care Act 2014, despite its laudable goals, is yet to be applied sufficiently well to make a difference to the lives of people with learning disabilities and/or autism or their carers who took part in this study.

3. Challenges with social service provision including lack of continuity of social worker input, variable and declining levels of expertise, and pejorative attitudes towards carers appears to be worsening. That said, carers are understanding of the pressures on health and social care and are willing to work with them to improve the situation.

4. Carers’ fears for the future as they contemplate who will care for their loved one once they are no longer able to care for them.

There is a need for age-appropriate housing, weekend activities for people with learning disabilities, and respite for carers. Transformational change which includes trust-building and co-production between health and social services and carers is  needed to improve relationships between the parties. Meaningful partnerships between social workers and carers will reduce the problem of the frequent need of carers to urge social services to provide adequate care and support. Information on options for people with learning disabilities transitioning into old age as well as practical support will help reduce the risk of crisis situations happening when older carers can no longer care. 

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The invisible workforce during the COVID-19 pandemic: Family carers at the frontline [version 1; peer review: 2 approved]

This is an open letter to acknowledge the essential and increasingly challenging role unpaid family carers are playing in the COVID-19 pandemic. The letter is written by members of the CAREWELL team, a HRB-funded project that aims to promote health and self-care behaviours among working family carers. Family carers provide care to family and friends in the community who need support due to old-age, disability and chronic illness. In many cases, family carers are supporting those who are considered most at risk in this pandemic meaning carers must reduce their own risk of infection in order to protect their dependent family members. The temporary reduction of some home care services, as well as school and creche closures, means that family carers are providing increased levels of care with little or no support. At a time when both worlds of work and care have been dramatically transformed, we wish to shed light on those who are currently balancing paid employment with a family caregiving role. We argue that there is much to be learned from the recent work restrictions that could benefit employees, including working family carers, beyond this pandemic. We also wish to build on the potential positives of a transformed society and encourage policy makers and employers to focus on what is currently being implemented, and to identify which measures could be used to create a bedrock of policies and practices that would offer robust and effective support to family carers. It is hoped that family carers will receive greater recognition for the significant role they play in society, providing essential care and alleviating the strain on health and social care systems, both during and post the COVID-19 pandemic.

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Caring and Coping with Dementia during COVID-19

Research Aim: This aim of this research is to explore how the experiences and needs of people with dementia and carers have changed throughout the COVID-19 pandemic and to understand how these needs can be appropriately addressed. Summary: This report presents the findings of national research undertaken by The Alzheimer Society of Ireland (ASI) between 8th and 26th June 2020, which explored how people with dementia and their carers are coping during COVID-19 and to understand their challenges and needs. This report follows on from a national survey carried out at the start of April 2020, when dementia services ceased operating and COVID-19 restrictions were imposed.

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Caregivers’ failure to thrive: A case for health and continuing care systems transformation

Excluding family caregivers and their goals from healthcare thinking and system design has contributed to their “failure to thrive.” Family caregivers are diverse, with dynamic, enduring, and variable life course care trajectories that are largely ignored. Using a co-design approach, caregivers prioritized their goals across seven life domains in an on-line survey. Physical, mental, and emotional health goals were top priorities across all ages. However, care-related goals were not caregivers’ highest priority. Goals related to financial well-being, social connections, employment, education, and care were variable across ages. Our findings suggest that transforming health and continuing care systems begins with recognizing variability of caregivers’ goals across their life courses. Adopting a co-design approach with family caregivers may serve as a model to develop a collaborative health and continuing care system. One that recognizes and supports family caregivers to achieve their goals, so that they not only survive but thrive.

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COVID-19 and the impact of the Closure of day services on People with intellectual disabilities

In mid-March Disability day services closed to people with intellectual disabilities with a small number of exceptions. In May and early June, Inclusion Ireland surveyed the people who use these services and their families on the impact the closure of service has had on them and the supports they have received in this time. In total, 291 family members answered our survey and 55 people with intellectual disabilities responded to an easy-to-read version of our survey giving a total response of 346. Peoples engagement with their service over the Covid period has been variable with some people reporting regular contact, daily online activities, and some face to face support while more than half of respondents have had very little meaningful  contact at all. The closure of day services impacting on the mental health of people cannot be underestimated. A significant number of respondents reported increased loneliness, increased anxiety, and increased challenging behaviour or anger. At the same time more that 20% of people reported being happier during the lock down. As services reopen and start to support people with intellectual disabilities in a ‘different or remote’ manner the needs of people with high support needs and complex disabilities must be considered carefully. This group of people tell us they cannot access virtual technology even with one on one family support to do so.

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Tensions in dementia care in China: An interpretative phenomenological study from Shandong province

Aims: The study aims to analyse the tensions and the challenges of dementia care that are experienced by people with dementia and their family caregivers in China. Background: China has the largest dementia population in the world; however, dementia care services and related support services are still developing. Caring for a person with dementia is very challenging, as evidenced by many studies. As the majority of people with dementia are looked after by their family in their homes in China, it is very important to understand what people with dementia and their family caregivers are experiencing in the context of dementia care services that are in the process of developing. Design: Interpretative phenomenological analysis (IPA) was used. Method: Semi-structured individual interviews with 24 participants (10 people with dementia and 14 unrelated family caregivers) recruited from a mental health centre in Shandong Province. Findings: Three main themes emerged that highlighted unmet need: (a) Lack of support services, (b) Insufficient institutional care and (c) Social attitude and social stigma towards dementia. Conclusions: These themes reveal the challenges that the participants face in the context of dementia care services that are in the process of development in China; and how their lived experiences have been affected by the constraints of social support, public services, healthcare access, long-term care services and social stigma. Implications for practice: This study highlights the tensions that are identified by people with dementia and family caregivers. The research recommends that more support services would be beneficial for this group and would also enhance family support dementia care in China. Looking after an older family member is a culturally, socially and legally embodied norm in Chinese society, so it is important to address education for dementia awareness and the sustainability of family support care services in China by providing dementia services and resources to support both people with dementia and family caregivers.

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Emerging Issues of Intelligent Assistive Technology Use Among People With Dementia and Their Caregivers: A U.S. Perspective

The increasing number of older adults with cognitive deficits, including dementia, poses a major challenge for public health in the United States. At the same time, the limited number of informal and professional caregivers available to support this rapidly growing population is of mounting concern. Not only does population aging limit the number of potential caregivers, but extant caregivers often lack skills to provide quality care. The integration of intelligent assistive technologies (IAT), including devices, robotics and sensors in many forms, into eldercare, may offer opportunities to reduce caregiver burden and enhance healthcare services while improving the quality of life among older adults with mild to severe cognitive deficits. However, many caregivers and their care recipients lack access to these technologies. The reasons for this reduced access are multifactorial, including the digital divide, sociocultural factors, and technological literacy. This mini review investigates the emerging use of IAT available to caregivers and older adults with cognitive deficits and explores the challenges in socioeconomic status and technological literacy as well as ethical and legal implications that should be considered in the design and development of IAT for older adults with cognitive deficits. Drawing from existing literature, it will suggest frameworks for design and adoption aimed at increased and equitable access for this vulnerable population. 

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Understanding family caregivers' needs to support relatives with advanced progressive disease at home: An ethnographic study in rural Portugal

Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers' experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time. Methods: An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (n = 33) and in-depth interviews (n = 11). Thematic content analysis was used to analyse the data. Results: Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers' physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time. Conclusions: These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs. 

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Caregiving Self-efficacy and Knowledge Regarding Patient Positioning Among Malaysian Caregivers of Stroke Patients

Background Most family caregivers of stroke patients in Malaysia do not receive adequate prior preparation or training. This study aimed to determine levels of patient positioning knowledge and caregiving self-efficacy among caregivers of stroke patients. Methods This cross-sectional study was conducted at an urban teaching hospital involving 128 caregivers of stroke patients. The caregivers were conveniently sampled and completed the data collection forms, which comprised their socio-demographic data, patients' functional status, the Caregiving Knowledge For Stroke Questionnaire: Patient Positioning (CKQ-My(C) Patient Positioning) to measure caregiver's knowledge on patient positioning, and the Family Caregiver Activation Tool (FCAT(C)) to measure caregivers' self-efficacy in managing the patient. Descriptive and multivariate inferential statistics were used for data analysis. Results Among the caregivers sampled, 87.3% had poor knowledge of positioning (mean score 14.9 +/- 4.32). The mean score for FCAT was 49.7 +/- 6.0 from a scale of 10 to 60. There was no significant association between knowledge on positioning and self-efficacy. Multiple linear regression showed that caregivers' age (B = 0.146, p = 0.003) and caregiver training (B = 3.302, p = 0.007) were independently associated with caregivers' self-efficacy. Conclusion Caregivers' knowledge on the positioning of stroke patients was poor, despite a fairly good level of self-efficacy. Older caregivers and receiving caregiver training were independently associated with better caregiver self-efficacy. This supports the provision of caregiver training to improve caregiver self-efficacy.

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The experiences and perspectives of family surrogate decision-makers: A systematic review of qualitative studies

Objective: Surrogate decision-makers play an increasingly important role in the lives of older adults who have lost their ability to make decisions. Currently, there is a lack of evidence to support family surrogates in making a variety of decisions. Additionally, a greater understanding of family caregivers’ experiences and perspectives toward making surrogate decisions is needed. Methods: This study employed a qualitative systematic review and thematic synthesis of the research evidence using the methodologies of the Joanna Briggs Institute (2014) and Thomas and Harden (2008). Results: Decisions were classified per three main types: intensive care treatment, end-of-life treatment, and placement. Six themes were identified concerning surrogates’ experiences: struggle and reluctance, seeking reassurance, communication with healthcare professionals, family support, older adults’ wishes, and negative impact. Conclusion: Family surrogates often lack adequate preparation and education regarding decision-making. Quality communication between surrogates and healthcare providers helps reduce the anxiety and guilt experienced when making surrogate decisions. Further research is required to elucidate these experiences with more cultural and racial nuances. Practice implications: This review informs healthcare providers’ awareness of the challenges faced by surrogates and fosters improved surrogate decision-making experiences.

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Challenges Faced by Family Caregivers: Multiple Perspectives on Eldercare

The focus of this study was to identify challenges to family eldercare provision from the perspectives of both caregivers and community stakeholders. This qualitative study used data from 306 family caregivers and 116 stakeholders (aging, social, and health service professionals who work with older adults and their families) in North Dakota. Data sources included an American Association of Retired Persons-ND survey of 110 caregivers, a survey by the ND Family Caregiver Support Program (196 participants), and a Statewide Caregiving Stakeholder Survey (116 participants). Thematic analysis identified five themes: (a) financial burden of providing eldercare, (b) insufficient access to respite care, (c) difficulty finding and navigating available services and programs, (d) lack of knowledge and training on care provision, and (e) challenges related to environmental context of caregiving. Implications for working with family caregivers and developing policies for eldercare are discussed.

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Living with Chronic Heart Failure: Exploring Patient, Informal Caregiver, and Healthcare Professional Perceptions

Due to the complexity of heart failure (HF) and its treatment process, a high level of patient and informal caregiver engagement is required for management results. We aimed to explore the views of HF patients, informal caregivers, and healthcare professionals about personal experiences, perceived needs, and barriers to optimal HF management. A qualitative study using semi-structured interviews with HF patients (n = 32), their informal caregivers (n = 21), and healthcare professionals (n = 5) was conducted in the outpatient HF clinic in Slovenia in 2018. A content analysis method was used to analyze the data. Negative emotional response to disease and its limitations (especially the inability to continue with work) and changes in family roles were the most prevalent topics regarding the impact of HF on livelihood. Among the most common barriers to HF self-care, were the difficulties in changing lifestyle, financial difficulties due to the disease, traditional cuisine/lack of knowledge regarding a healthy diet and lack of self-confidence regarding physical activity. Despite psychological and social difficulties due to HF being highlighted by patients and informal caregivers, only healthcare professionals emphasized the need to address psychosocial aspects of care in HF management. Established differences could inform the implementation of necessary support mechanisms in HF management.

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Covid-19: Impact & Need for People with Dementia and Family Carers

This report produced by The ASI summarises the results of three surveys that were distributed to people living with dementia, family carers, and Community Champions (Understand Together). The aims of this report are threefold:

1. To identify the current challenges experienced by people with dementia and family carers in the current Covid-19 Pandemic through simple surveys.

2. To bring together suggestions from people with dementia and family carers of how ASI can continue to support them in lieu of suspended services.

3. To communicate the above work in an accessible way to the committee in such a way that will enable the committee to review and shortlist the evidence in a timeline manner.

Results are presented for each individual cohort: People living with dementia, Family Carers, and Community Champions. 

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The development of a web-based resource to provide information and psychosocial support to informal cancer carers in hospitals in Vietnam

Objective: Vietnam, like many low/middle income countries, lacks the infrastructure to provide information and psychosocial support to cancer patients and their carers. We undertook a codesign process to develop a web resource to inform and support carers. Methods: Cancer carers and health care professionals' perspectives regarding information and support needs and the content and delivery of web-based supports, were explored via five focus groups (n = 39) and semistructured interviews (n = 4) in Vietnam in 2018. Focus groups and interviews were transcribed verbatim and analyzed using thematic analysis. Resource components were verified at two joint stakeholder workshops attended by 40 participants. Results: The development of a web-based resource was identified as an urgent need. A web-based resource was viewed as a suitable interface to provide support across regions in a sustainable way. The structure of the resource should include peer-led videoed advice, signposting to services and include official endorsement. The potential resource components identified includes (a) cancer causes and consequences; (b) hospital administration, treatment processes, and prices; (c) daily living; (d) emotional and supportive information; (e) skills training; and (f) nutrition and traditional medicine. Conclusion: The development of a web-based resource to deliver information and psychosocial supports to cancer carers and by-proxy patients is an urgent requirement in Vietnam. Next steps will include resource development and testing the resources ability to address the unmet needs of cancer carers and patients. A web-based resource to support cancer carers has the potential for application to other developing countries. 

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Information Needs of Informal Caregivers in Posttraumatic Stress Disorder

Researchers examined questions of caregivers for individuals with posttraumatic stress disorder (PTSD) by means of a) a content analysis and b) a thematic analysis of posts on an online peer support forum. A total of 292 question posts were analyzed. Content analysis categories were based on previous research and included question motivation (cognitive, emotional, and social) and content (symptoms, prognosis, medication/treatment, coping, support, and seeking reassurance). Three newly identified themes (PTSD behavior identification and response, interpersonal interactions with trauma survivors, and healthcare system concerns) were generated through the thematic analysis. These overarching themes regarding information needs, and their subcategories, are discussed in detail. This study provides a preliminary examination of the information needs of PTSD caregivers, offers suggestions for future research, and discusses implications for the healthcare system. 

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Spiritual Dimension at the End of Life: A Phenomenological Study from the Caregiver’s Perspective

The lives of healthy and sick people are structured according to a variety of conceptual matrices. One of these matrixes consists of philosophical, spiritual, and religious convictions, being this especially relevant in the process of the end of life. The objective of the study is to understand the meaning that individuals at the end of life and the relatives of such individuals award spiritual and/or religious beliefs through an examination of caregiver narratives. Multicentric study was developed that used a qualitative design and a phenomenological approach. The study was conducted in the autonomous community of Andalusia, specifically in the provinces of Almeria, Malaga, Seville, Granada, and Huelva. The selection method was purposive sampling. Caregivers who had lost a relative in a period between 2 months and 2 years previously and who were not in a process of pathological grieving were selected for inclusion in the study. The method involved five discussion groups and 41 in-depth interviews, with a total of 87 participants. A change of paradigms is necessary in which, among other elements, the focus of palliative care is centered on the ability to address these spiritual needs, and healthcare professionals are trained to assist in the provision of such care. Another important consideration is the inequality of spiritual supported provided by clergy from various religions. At least in the cultural context of the research, Catholic chaplains were the only institutional figures whose presence was assumed necessary by health organizations. However, the cultural and/or religious diversity in the autonomous community in which the study was conducted is increasingly broad and complex. It appears necessary to incorporate a variety of clergies in health units so that all patients may find support, whether in terms of companionship or celebration. 

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Exploring the experiences of people treated with immunotherapies for advanced melanoma and those caring for them: “real-world” data

Background: Recent advances in the development of immunotherapy drugs have resulted in durable responses and improved overall survival for a proportion of patients with advanced melanoma; however, toxicities can be potentially life-threatening. The patients' family and friends (carers) are relied upon to support patients at home post treatment; however, we know little about their experiences. Objectives: This study aimed to understand the experiences of patients with advanced melanoma who received immunotherapy and their carers; and to explore the impact of immunotherapy treatment on patients' and carers' quality of life (QoL). Methods: A cross-sectional, exploratory design was employed. Semi-structured interviews were conducted with patients: diagnosed with stage IV melanoma, attending an Australian public cancer hospital, had completed or were receiving treatment with immunotherapies; and the people caring for them at home. Results: Patients (n = 22) described how immunotherapy impacted emotional health, functional ability; and had damaging economic consequences. Fatigue was reported consistently as having a considerable negative influence across all domains of QoL. Carers (n = 9) were anxious about their ability to correctly identify, report and manage side effects at home. Conclusions: Results demonstrate how immunotherapy can impact the QoL of both patients and carers, either directly through toxicities or indirectly through mechanisms such as stress, financial toxicity, or fatigue that limits participation in life activities. Implications for Practice: Supportive care resources and interventions are needed for those receiving immunotherapy to minimise negative impacts on QoL. Carers likewise require better preparation and information to assist in identifying potential treatment toxicities and ensure patient safety.

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Partnering with Family Caregivers in Pain Management

Extract: 

Family caregivers play a pivotal role in supporting the efforts of healthcare providers for individuals with chronic diseases or disabling conditions ( Chi & Demiris, 2017 ). According to the National Alliance for Caregiving, in 2015 approximately 43.5 million adult family caregivers in the United States had provided unpaid care to family members in the previous 12 months ( National Alliance for Caregiving & AARP Public Policy Institute, 2015 ). As the population of aging Americans with chronic conditions continues to increase, the demand for family caregiver assistance will further rise ( Chi & Demiris, 2017 )...

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Guidance for behavioural interventions aiming to support family support providers of people with spinal cord injury: A scoping review

Rationale: Research has extensively examined the adverse outcomes of being family support provider also known as a family caregiver, of someone with spinal cord injury (SCI) such as psychological distress, poor health, and burden. Despite clear evidence of the negative impact of this social role, few interventions exist aiming to support family support providers of people with SCI. Objective: This scoping review aimed to guide future intervention development by identifying the components necessary to develop an intervention to support SCI family support providers using the Behaviour Change Wheel (BCW). Methods: Electronic databases (CINAHL, PsycINFO, Medline, Embase) were searched in May 2017. Articles relating to outcomes and/or behaviours of support providers of people with SCI were identified. Intervention components of the BCW, including behaviours, factors influencing behaviours, intervention content, and evaluation methods, were extracted from included articles. Results: Of the 59 included articles, most emphasized the outcomes of being a support provider but provided little evidence of behaviours, which may influence such outcomes. The most commonly identified behaviours included engaging in leisure time or daily activities, problem-solving, and providing support. Very few measures were used to measure engagement in behaviours objectively. The literature suggests that behaviours are often influenced by family support providers' physical and social environments. However, barriers may vary between behaviours and contexts. Conclusion: The results of this review show that there are many viable behavioural targets for intervention. Therefore, intervention efforts may need to be tailored to individuals' needs. A promising intervention approach may be to use a theory which promotes change in the ecological context of family support providers while encouraging behavioural strategies to overcome individual barriers. Future research should further examine the factors that influence specific behaviours to more comprehensively understand the context of the behaviour as well as effective intervention strategies to promote change.

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The Lived Experiences of Family Caregivers of Persons Dying in Home Hospice: Support, Advocacy, and Information Urgently Needed

Death in America is changing from hospital to home, which demands complex skills by family caregivers. However, information from family members about the challenges of providing home hospice care until death is scant. To understand the challenges a family caregiver confronts when he/she decides to deliver hospice care and during the actual delivery of the hospice care, we used descriptive phenomenology methods to document the experience of 18 family caregivers as they delivered home hospice care. We learned the decision to begin home hospice was made by a physician, followed frequently by family resistance and refusal to assist. Family caregiver burden is enormous, compounded by fatigue, sleeplessness, and confusion on issues such as morphine dosage and administration. The stages and process of dying, such as transition, baffled family caregivers. All family caregivers agree financial and emotion support, empathic advocacy, and affirmation of their worth are needed to sustain them to care for the dying. The peacefulness following offering a home death comes at a high price to family caregivers. Evidence is needed from a randomized controlled trial as to effectiveness of advocacy support for family caregivers to increase their resiliency and higher probability of a good death for the dying.

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Unmet needs of family caregivers of hospitalized older adults preparing for discharge home

Objectives: To describe unmet needs of caregivers of hospitalized older adults during the transition from hospital back home, and identify subgroups with different needs. Methods: Patients and family caregivers were recruited from an acute care hospital in Montreal, Canada. Measures included Instrumental Activities of Daily Living (IADL), Hospital Anxiety and Depression Scale (HADS), Zarit burden scale, and Family Inventory of Needs. Dimensions of unmet needs were explored with principal component analysis; regression tree models were used to identify subgroups with different unmet needs. Results: A total of 146 patient-caregiver dyads were recruited. Three categories of caregiver unmet needs were identified: patient medical information; role clarity and support; and reassurance. Caregiver subgroups with highest unmet needs were those with high burden of care plus depressive symptoms (n = 46) and those caring for patients with low IADL scores (n = 10). Discussion: Caregivers with high burden and depression are those with the greatest unmet needs during the care transition.

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Receptivity of Hospitalized Older Adults and Family Caregivers to Prognostic Information about Aging, Injury, and Frailty: A Qualitative Study

Background: Frailty is the leading prognosticator for poor outcomes and palliative care among older adults. Delivery of negative prognostic information entails potentially difficult conversations about decline and death. Objective: The study aims were to: 1) examine hospitalized older adults' and family caregivers' receptivity to general (vs. individualized) prognostic information about frailty, injury, and one-year outcomes; and 2) determine information needs based on prognostic information. Design: Provision of general prognostic information followed by semi-structured interview questions. We deductively analyzed qualitative data within the context of problematic integration theory. Setting: An academic medical center in the Southeast region of the U.S. Participants: Purposive sampling was utilized to obtain a distribution of patients across the frailty continuum (non-frail [N=10], pre-frail [N=9], frail [9=6]). Twenty-five older adults (≥ age 65) hospitalized for a primary injury (e.g. fall) and 15 family caregivers of hospitalized patients were enrolled. Methods: Hospitalized older patients and family caregivers were shown prognostic information about one-year outcomes of injured older adults in the form of simple pictographs. Semi-structured interview questions were administered immediately afterwards. The interviews were audio-recorded, transcribed, and analyzed using qualitative content analysis. Demographic and medical information data were used to contextualize the responses during analysis. Results: Overall, participants (patients [56%], caregivers [73%]) were open to receiving prognostic information. A small number of family caregivers (N=3) expressed reservations about the frankness of the information and suggested delivery through a softer approach or not at all. Qualitative data was coded using categories and constructs of problematic integration theory. Four codes (personalizing the evidence, vivid understanding, downhill spiral, realities of aging) reflected probabilistic and evaluative orientation categories of problematic integration theory. One code (fatalism vs. hope) represented manifestations of ambivalence and ambiguity in the theory; and another code (exceptionalism) represented divergence and impossibility. Two codes (role of thought processes, importance of faith) reflected forms of resolutions as described in problematic integration theory. Information needs based on prognostic information revealed four additional codes: give it to me straight, what can I do? what can I expect? and how can I prevent decline? A consistently reported desire of both patients and caregivers was for honesty and hope from providers. Conclusion: This study supports the use of general prognostic information in conversations about aging, injury, frailty and patient outcomes. Incorporating prognostic information into communication aids can facilitate shared decision making before end-of-life is imminent. 

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The supportive care needs of people living with pulmonary fibrosis and their caregivers: A systematic review

Background: People with pulmonary fibrosis often experience a protracted time to diagnosis, high symptom burden and limited disease information. This review aimed to identify the supportive care needs reported by people with pulmonary fibrosis and their caregivers. Methods: A systematic review was conducted according to PRISMA guidelines. Studies that investigated the supportive care needs of people with pulmonary fibrosis or their caregivers were included. Supportive care needs were extracted and mapped to eight pre-specified domains using a framework synthesis method. Results: A total of 35 studies were included. The most frequently reported needs were in the domain of information/education, including information on supplemental oxygen, disease progression and prognosis, pharmacological treatments and end-of-life planning. Psychosocial/emotional needs were also frequently reported, including management of anxiety, anger, sadness and fear. An additional domain of “access to care” was identified that had not been specified a priori; this included access to peer support, psychological support, specialist centres and support for families of people with pulmonary fibrosis. Conclusion: People with pulmonary fibrosis report many unmet needs for supportive care, particularly related to insufficient information and lack of psychosocial support. These data can inform the development of comprehensive care models for people with pulmonary fibrosis and their loved ones. 

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Reasons for Drug Administration Problems and Perceived Needs for Assistance of Patients, Family Caregivers, and Nurses: A Qualitative Study

OBJECTIVE: Investigation of drug administration problems, respective causes, and needs for assistance. METHODS: Focus group discussions with patients, family caregivers, and nurses were conducted using a semi-structured interview guideline for a focused exploration of the participants' drug administration experiences and perceived needs for assistance. All discussions were audio-recorded and video-recorded, verbatim transcribed, and analyzed according to Mayring's qualitative content analysis. RESULTS: In total, 6 focus group discussions were conducted. The qualitative content analysis revealed that patients and family caregivers frequently trivialized drug administration, were unaware of errors, and primarily blamed the dosage form of causing administration problems. Nurses also considered health-care system-related conditions and patient factors as potential causes of administration problems. CONCLUSIONS: The administration problems and perceived causes were multifaceted and often directed toward inappropriate dosage forms or health-care system-related conditions rather than critically questioning the medicine user's administration skills. To increase medicine users' motivation to scrutinize wrong administration practices, health-care professionals should consider individual perspectives on administration problems and perceived causes, assist medicine users' to identify the true cause of a distinct problem, and provide individualized support.

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Comparing perspectives of family caregivers and healthcare professionals regarding caregiver burden in dementia care: results of a mixed methods study in a rural setting

BACKGROUND: Persons with dementia (PwD) need support to remain in their own homes as long as possible. Family caregivers, homecare nurses and general practitioners (GPs) play an important role in providing this support, particularly in rural settings. Assessing caregiver burden is important to prevent adverse health effects among this population. This study analysed perceived burden and needs of family caregivers of PwD in rural areas from the perspectives of healthcare professionals and family caregivers. METHODS: This was a sequential explanatory mixed methods study that used both questionnaires and semi-structured interviews. Questionnaires measuring caregiver burden, quality of life and nursing needs were distributed to the caregivers; health professionals received questionnaires with adjusted items for each group. Additionally, in-depth qualitative interviews were carried out with eight family caregivers. RESULTS: The cross-sectional survey population included GPs (n = 50), homecare nurses (n = 140) and family caregivers (n = 113). Healthcare professionals similarly assessed the psychosocial burden and stress caused by behavioural disturbances as most relevant. Psychological stress, social burden and disruptive behaviour (in that order) were regarded as the most important factors from the caregivers' perspective. It was found that 31% of caregivers reported permanent or frequent caregiver overload. Eight themes related to caregiver burden emerged from the subsequent interviews with caregivers. CONCLUSIONS: Professional support at home on an hourly basis was found to be highly relevant to prevent social isolation and compensate for lack of leisure among caregivers of PwD. Improvement of interprofessional dementia-related education is needed to ensure high-quality primary care. 

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Conceptual Framework to Guide Intervention Research Across the Trajectory of Dementia Caregiving

This article presents a comprehensive conceptual framework designed to foster research in the changing needs of caregivers and persons with dementia as they move through their illness trajectory. It builds on prior theoretical models and intervention literature in the field, while at the same time addressing notable gaps including inadequate attention to cultural issues; lack of longitudinal research; focus on primary caregivers, almost to the exclusion of the person with dementia and other family members; limited outcome measures; and lack of attention to how the culture of health care systems affects caregivers' quality of life. The framework emphasizes the intersectionality of caregiving, sociocultural factors, health care systems' factors, and dementia care needs as they change across time. It provides a template to encourage longitudinal research on reciprocal relationships between caregiver and care recipient because significant changes in the physical and/or mental health status of one member of the dyad will probably affect the physical and/or mental health of the partner. This article offers illustrative research projects employing this framework and concludes with a call to action and invitation to researchers to test components, share feedback, and participate in continued refinement to more quickly advance evidence-based knowledge and practice in the trajectory of dementia caregiving.

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The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review

Background: Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services. Aim: To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory. Design: A systematic review of qualitative research conducted using Thematic Synthesis – PROSPERO registration CRD42017075311. Data Sources: Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality. Results: A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients’ and carers’ experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement. Conclusion: The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change. 

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Exploring Experiences of Survivors and Caregivers Regarding Lung Cancer Diagnosis, Treatment, and Survivorship

Background: Advances in screening and treatment approaches alongside changing population demographics have the potential to influence the experience of living with lung cancer. There is potential for improved outcomes and quality of life for those diagnosed with the disease. Objectives: This exploratory study was undertaken to gain insight regarding the current experiences of individuals diagnosed with lung cancer and their family caregivers given the evolving changes in lung cancer screening and treatment. Method: A qualitative descriptive design was utilized and in-depth interviews conducted with 8 survivor and 4 family caregivers. Interviews were subjected to a conventional content analysis. Results: Participants identified challenges related to being diagnosed in a timely manner, being told the diagnosis with compassion, coping with multiple symptoms during treatment, and regaining a new normal following treatment. Dealing with late effects of treatment (ie, fatigue, shortness of breath, neuropathy) was frustrating when individuals were not aware the effects would emerge or had not had relevant self-management instructions. Conclusions: Lung cancer survivors constitute an emerging cadre of survivors. Attention is needed to their preparation for, and coping with, the survivorship transition.

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Young carers research project: Summary of findings

A number of recent studies have highlighted the challenges facing young people as a result of the COVID-19 pandemic. Like their peers, young people aged 16 to 25 who are caring for a family member or friend have experienced significant change and instability during this unprecedented period.

During the peak of the COVID-19 lockdown, Carers NSW conducted online interviews and focus groups with 28 young carers to better understand their experiences and support needs and to learn how to engage with them more effectively. This summary report includes powerful stories of young people caring for loved ones while juggling study, work, family and social responsibilities.

This report shares insights from young carers across a range of themes, including education, employment, service provision and relationships, embedding the young carer voice throughout. These insights will help to inform ongoing and future service provision, research and systemic advocacy conducted by Carers NSW and our partners and stakeholders.

A review of existing research literature (see Appendix I) and internal consultation with Carers NSW staff working with young carers, conducted in the scoping phase of this project, identified that young carers are often isolated and experience socio-economic disadvantage as a result of their caring responsibilities. However, they are often reluctant to disclose their caring responsibilities to others and commonly perceive their own needs and experiences as less important than those of the person they care for. These factors can make it more difficult for researchers and others to successfully engage with young carers.

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The Quality of Life as a Predictor of Social Support for Multiple Sclerosis Patients and Caregivers

BACKGROUND: Coping with a diagnosis of multiple sclerosis (MS) is challenging. MS is one of the most common causes of nontraumatic disability in young adults, and patients may need assistance with daily life activities. This article explores the relation between quality of life (QOL) and the perceived available social support among patients with MS and their families. METHODS: The study included 120 subjects (60 patient-caregiver dyads). The average age of the patients was 53.95 ± 10.19 years, and for caregivers, it was 50.8 ± 13.3 years. The study used 2 subscales of the Berlin Social Support Scale (perceived availability of social support and need for social support) and the World Health Organization Quality of Life questionnaire for the assessment of QOL. RESULTS: QOL in MS is lower compared with that of their caregivers in all dimensions except the social domain (P < .001, r = 0.54-0.64). A higher need for social support was experienced by caregivers. The need for support in this group is affected by 3 predictors: QOL in the environmental domain and in the physical domain as well as their subjective health. An improvement in QOL in all the domains is related to an increase of perceived available support, in both the group of patients and that of their caregivers (P < .05, ρ = 0.28-0.59). CONCLUSIONS: Perceived available support is of great importance for both patients and their caregivers to enable them to function better in the physical, mental, social, and environmental domains of their QOL, where social relationships play a predictive role.

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Support needs and health-related quality of life of family caregivers of patients requiring prolonged mechanical ventilation and admission to a specialised weaning centre: A qualitative longitudinal interview study

Objectives: Family caregivers of patients requiring prolonged mechanical ventilation may experience physical and psychological morbidity associated with a protracted intensive care unit experience. Our aim was to explore potentially modifiable support needs and care processes of importance to family caregivers of patients requiring prolonged mechanical ventilation and transition from the intensive care unit to a specialised weaning centre. Research methodology/design: A longitudinal qualitative descriptive interview study. Data was analysed using directed content analysis. Setting: A 6-bed specialised weaning centre in Toronto, Canada. Findings: Eighteen family caregivers completed interviews at weaning centre admission (100%), and at two-weeks (40%) and three-months after discharge (22%) contributing 29 interviews. Caregivers were primarily women (61%) and spouses (50%). Caregivers perceived inadequate informational, emotional, training, and appraisal support by health care providers limiting understanding of prolonged ventilation, participation in care and decision-making, and readiness for weaning centre transition. Participants reported long-term physical and psychological health changes including alterations to sleep, energy, nutrition and body weight. Conclusions: Deficits in informational, emotional, training, and appraisal support of family caregivers of prolonged mechanical ventilation patients may increase caregiver burden and contribute to poor health outcomes. Strategies for providing support and maintaining family caregiver health-related quality of life are needed. 

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Care, poverty and coronavirus across Britain

Carers, paid and unpaid, are at the forefront of our response to the Coronavirus, putting themselves at risk to protect us all. Yet, if you are a carer, for adults or children, you are more likely to be living in poverty. This is not right.

This briefing note updates our Make Care Count report which focuses on the link between care and poverty before the crisis. It describes carers’ experiences of the pandemic, prioritising the voices of carers throughout, before detailing how we can take the first steps towards ending poverty for carers in Britain.

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Supporting informal carers during the covid-19 pandemic

A working list of things to be aware of/ consider in supporting informal carers (family and friends who support patients in an unpaid role) impacted by COVID-19. This is partly evidence-based and partly grounded in our combined experience of working in applied research on informal carer support needs

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Integrating family caregiver support into a gynecologic oncology practice: An ASCO quality training program project

PURPOSE A needs assessment of family caregivers (CGs) in our gynecologic oncology clinic found that 50% of CGs report nine or more distressing unmet needs, but only 19% of patients had a documented CG. We conducted an ASCO Quality Training Program project with the following aims: (1) to identify and document primary CGs for 85% of patients within two clinic visits of a gynecologic cancer diagnosis, and (2) assess the needs of and provide interventions to 75% of identified family CGs. METHODS Plan-Do-Study-Act (PDSA) methodology and tools endorsed by the ASCO Quality Training Program were used. An interprofessional team reviewed baseline data (ie, any mention of a family CG in the electronic health record visit note; CG distress survey), defined the problem and project aims, created process maps, and identified root causes of poor CG identification and documentation. Eight successive PDSA cycles were implemented between October 2018 and March 2019 to address identified root causes. RESULTS For aim 1, CG identification increased from 19% at baseline to 57% postimplementation, whereas for aim 2, assessment improved from 28% at baseline to 60% postimplementation. Results fell somewhat short of initial goals, but they represent an important initial improvement in care. The core team has begun additional PDSA cycles to improve CG identification rates and extend the momentum of the project. CONCLUSION This project demonstrated that a CG assessment protocol can be implemented in a large, academic, gynecologic oncology clinic. Additional efforts to integrate CG identification, assessment, and intervention more fully within the clinic and electronic health record are under way.

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Profiles of family caregivers of patients at the end of life at home: A Q-methodological study into family caregiver' support needs

Background: Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home. Methods: A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included. Results: Four distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving. Conclusions: Family caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support. 

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Perceived Learning Needs of Patients With Heart Failure in Jordan: Perspectives of Patients, Caregivers, and Nurses: A Cross-Sectional Survey

Background Identifying learning needs is an important component of care among patients with heart failure (HF). There is a discrepancy in the level of importance of information as perceived by patients, caregivers, and nurses. No studies have been conducted to identify learning needs among patients with HF in Jordan. Objective The aim of this study was to identify the learning needs of patients with HF in Jordan from the perspective of patients, family caregivers, and their nurses. Methods A descriptive comparative design using a convenience sample of 67 patients with HF, 67 family caregivers, and 67 nurses was used. The Heart Failure Learning Needs Inventory was used to identify the learning needs. The mean scores were compared among the 3 groups and ranked by importance for each item to determine the most important areas of perceived needs for each group. Results All groups had high total Heart Failure Learning Needs mean scores: patients, 4.12 ± 0.92; caregivers, 4.14 ± 0.65; and nurses, 4.08 ± 0.54. The top priority learning need for both patients and caregivers was "the recommended daily salt intake," whereas for nurses, it was "why I am taking each medication and its side effects"; nurses significantly perceived it as more important to learn than patients and caregivers did. Younger and employed patients requested more information than other patients. Conclusions Although some similarities exist, there are important differences among the 3 groups on perceived importance of information. Understanding these differences may be critical in developing a tailored educational program for patients and caregivers and improving nursing practice.

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Seeking relational information sources in the digital age: A study into information source preferences amongst family and friends of those with dementia

Despite an increasing number of sources providing information and advice about dementia, those living with the condition feel inadequately informed. The reasons for this remain unclear. This study has three aims: to identify where people with dementia and their carers currently access dementia-related information from; to determine how accessible, credible and comprehensible people with dementia and their carers consider the available sources of information; and to determine how people with dementia and their carers would like to receive information. An online or postal survey was completed by 171 female and 41 male participants with a close family member or friend with dementia. Accessibility above quality held the greatest influence over an individual’s use of an information source. Participants preferred relational sources such as healthcare professionals as these were able to give individualised information, yet these were poorly accessible and lacked dementia specific knowledge. Therefore, individuals used non-relational sources such as the internet. However, increased use of the internet was linked to feeling overwhelmed by information. It was not the end result of the information search but the effort taken to reach the information that influenced participant’s perception of information gathering. Future research should look at ways of designing and providing accessible information sources that act and feel like relational contact. 

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Palliative care for family caregivers

Family caregivers provide substantial care for patients with advanced cancer, while suffering from hidden morbidity and unmet needs. The objectives of this review were to examine risk factors associated with caregiving for patients with advanced cancer, evaluate the evidence for pertinent interventions, and provide a practical framework for palliative care of caregivers in oncology settings. We reviewed studies examining the association of factors at the level of the caregiver, patient, caregiver-patient relationship, and caregiving itself, with adverse outcomes. In addition, we reviewed randomized controlled trials of interventions targeting the caregiver, the caregiver-patient dyad, or the patient and their family. Risk factors for adverse mental health outcomes included those related to the patient’s declining status, symptom distress, and poor prognostic understanding; risk factors for adverse bereavement outcomes included unfavorable circumstances of the patient’s death. Among the 16 randomized trials, the most promising results showed improvement of depression resulting from early palliative care interventions; results for quality of life were generally nonsignificant or showed an effect only on some subscales. Caregiving outcomes included burden, appraisal, and competence, among others, and showed mixed findings. Only three trials measured bereavement outcomes, with mostly nonsignificant results. On the basis of existent literature and our clinical experience, we propose the CARES framework to guide care for caregivers in oncology settings: Considering caregivers as part of the unit of care, Assessing the caregiver’s situation and needs, Referring to appropriate services and resources, Educating about practical aspects of caregiving, and Supporting caregivers through bereavement. Additional trials are needed that are powered specifically for caregiver outcomes, use measures validated for advanced cancer caregivers, and test real-world interventions. 

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The COVID-19 Pandemic: Challenges and opportunities for carers in NSW

Carers NSW has been closely monitoring COVID-19 developments in NSW, the ongoing government response and the wide ranging impacts the virus and associated social distancing requirements have had on carers. Carers have experienced a variety of impacts, both in relation to the people they care for and in relation to their own health and overall wellbeing. Many carers provide care and support to people who are in higher risk categories, and many are in higher risk categories themselves due to age or an existing health condition. These factors have resulted in complexities surrounding provision of care, particularly in maintaining social distancing.  [...]

Carers NSW determined that it was crucial to hear directly from carers and other key stakeholders in order to gain a clear and accurate picture of the key issues, challenges and opportunities for carers during the pandemic. This report identifies the key findings of consultation conducted to inform Carers NSW service adjustments and systemic advocacy. 

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Caring behind closed doors: Forgotten families in the coronavirus outbreak

Carers UK carried out an online survey between 3rd April and 14th April 2020. A total of 5,047 carers and former carers responded to the survey. This included 4,830 current carers and 217 former carers. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. As not all respondents completed every question in the survey, a number of the figures given in this report, including those presented here, are based upon responses from fewer than 5,047 carers.

Of current carers responding to the survey:

  • 67% live in England, 19% live in Scotland, 9% live in Northern Ireland, and 6% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 23% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 27% are aged 45–54, 32% are aged 55– 64, 17% are aged 65–74, and 5% are aged 75 and over.
  • 4% identified as lesbian, gay or bisexual.
  • 4% described their ethnicity as black or minority ethnic.
  • 18% also have childcare responsibilities for a nondisabled child under 18.
  • 36% have been caring for 15 years or more, 17% for between 10–14 years, 24% for 5–9 years, 20% for 1–4 years, 2% for less than one year and just 1% have been caring since the beginning of the coronavirus outbreak. 
  • Most (71%) care for one person, 20% care for two people, 6% for three people, and 2% care for four or more people. 
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Caregiving work: The experiences and needs of caregivers in Australia

A considerable evidence base exists demonstrating the high prevalence of family caregiving in the community; however, there is a paucity of in-depth research examining the impact of family caregiving on the living and employment needs of those providing this unpaid service. This study employed a qualitative interview design with purposive sampling to examine the experiences of family caregivers, in order to examine how family caregiving decisions are made, the nature and challenges of caregiving work, and living and work supports that may enhance the caregiving experience. A sample of 12 adults providing care and assistance to family members with a range of disabilities, chronic conditions and long-term illnesses were interviewed. The results showed that family caregivers ‘fall into’ the caregiving role and often continue to provide care indefinitely without pay and with little or no financial support from others. In describing the best aspects of their experience many caregivers talked about helping their care recipient remain in their home and maintain their independence. In describing the worst aspects of their experience, all referred to the living and financial challenges of the caregiving work, and many highlighted the impact of their caregiving work on their employment and career needs. In conclusion, there is a need for public policies, programs and health services in Australia to better respond to the living, financial and support needs of family caregivers as health service providers, as well as their employment, development and career needs which are seriously impacted upon by caregiving work.

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Stress-related vulnerability and usefulness of healthcare education in Parkinson's disease: The perception of a group of family caregivers, a cross-sectional study

Parkinson's Disease is associated with a high assistive complexity, thus generating in caregivers a burden proportional to the intensity of the care provided. This study aims to evaluate whether the stress-related level of caregivers is related to their perception of the need for healthcare education. A cross-sectional study was conducted on 69 family caregivers that completed the Stress-related Vulnerability Scale (SVS scale) with a tool of proposed interventions stratified according to caregivers' need as “nothing”, “somewhat”, “moderately” and “extremely”. A direct association between the SVS scale and the perception of the usefulness of interventions was detected, and significant differences were observed for “Caregivers tele-support group” and “Peer-led support group” interventions, thus suggesting an important role for caregivers' emotional status in considering of training courses. Caregivers are split between low vulnerability, with minimal perception of training need, and high burden state with the acute necessity of support to manage patients.

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The role of the clinical nurse specialist multiple sclerosis, the patients' and families' and carers' perspective: An integrative review

Background: MS is a common, neurological disease and it's unpredictable, progressive disabling nature can have a devastating effect on patients, their families' and carers. It is therefore important that the MS Clinical Nurse Specialist develops appropriate skills, services and professional expertise to support individuals along the disease trajectory.; Design: An integrative literature review.; Method: A systematic search of nine databases; Cinahl, Medline, Scopus, Embase, Ovid, AMED, Academic Search Complete, Web of Science, PsycINFO up to January 31, 2018. Hand searching and review of secondary references also undertaken. Reporting using the PRISMA guidelines, quality appraised (Crowe Critical Appraisal Tool) and thematic data analysis approach (Braun and Clarke 2006).; Results: Findings from the 17 studies were extracted, synthesised and analysed thematically. Three themes emerged; the MS CNS as a longitudinal care co-ordinator, a bespoke care provider, and an expert resource. The findings suggest a strong desire for the MS CNS to be a leading health care professional to meet the needs of patient, family, and carer.; Conclusion: It can be argued that MS CNSs are best placed to meet the complex, variable needs individuals with MS, their families and carers. Further evidence is required to explore the variability of the disease and the progressive effect and impact of cognitive decline on MS patient, families' and carers' in order to meet their fluctuating and often complex needs. Findings from the review suggest a multifaceted role, and additionally, the needs of patients, families and carers are difficult to define as they vary over time as the disease progresses.

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Psychometric validation of the Turkish version of the Supportive Care Needs Survey for Partners and Caregivers (SCNS-P&C-T) of cancer patients

Objective: To evaluate the validity and reliability study of the Supportive Care Needs Survey for partners and caregivers of cancer patients in Turkish society (SCNS-P&C-T).; Methods: This cross-sectional survey followed by a test-retest reliability and psychometric validation study was conducted with 270 participants. The research data were collected using a patient and caregiver demographic survey, the SCNS-P&C-T, the Caregiver Strain Index, and the Hospital Anxiety and Depression Scale.; Results: Ten expert opinions were found to be consistent for content validity of the scale (I-CVI = 0.993, S-CVI = 0.956). The confirmatory factor analysis could not confirm the factor structure of the original scale. Therefore, an exploratory factor analysis was performed and the scale factor structure was determined. These factor structures are (a) psychological and emotional needs, (b) health care and information, (c) work and social needs, (d) communication and family needs.; Conclusion: The SCNS-P&C-T is a valid and reliable tool which can be used to identify unmet needs among caregivers in Turkish populations.

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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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Lung cancer and family-centered concerns

Background: Genetic and environmental interactions predispose certain groups to lung cancer, including families. Families or caregiving units experience the disease interdependently. We have previously evaluated the concerns and preferences of patients in addressing the lung cancer experience and cancer risks in their families. This qualitative study evaluates the concerns and preferences of family members and caregivers of patients with lung cancer in the lung cancer experience and familial cancer risks.; Methods: We held focus groups to discuss the format and timing of addressing these preferences and concerns. Qualitative data generated was analyzed using a grounded theory approach.; Results: Five focus groups totaling 19 participants were conducted. Seven themes were identified: (1) journey to lung cancer diagnosis has core dimensions for patient and family, (2) importance of communication between patients, families, and providers, (3) challenges for caregivers and family, (4) mixed perceptions of lung cancer causation among relatives, (5) discussion of cancer risk with relatives has complex dynamics, (6) impact of diagnosis on family health behaviors and screening, (7) role of genetic counseling.; Conclusions: Family members of patients with lung cancer are interested in discussing risk factors, prevention, and diagnoses and also would like access to other supportive services do learn about and cope with some of the stresses and barriers they experience in the family lung cancer journey. The diagnosis represents a potential teachable moment with the opportunity to reduce the risk of LC development or improve early detection in LC patient's family members.

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Implementing routine communication about costs of cancer treatment: perspectives of providers, patients, and caregivers

Objectives: Rising costs in oncology care often impact patients and families directly, making communication about costs and financial impacts of treatment crucial. Cost expenditures could offer opportunities for estimation and prediction, affording personalized conversations about financial impact. We sought to explore providers', patients', and caregivers' preferences towards implementing communication about cost, including when, how, and by whom such information might be provided.; Methods: We conducted semi-structured phone interviews with a diverse population including 12 oncology providers, 12 patients, and 8 patient caregivers (N = 32). The constant comparative method was used to identify mutually agreed upon themes.; Results: Participant groups differed in their concerns surrounding cost communication, namely whether they want to receive this information and how such information might impact provider and patient treatment decisions. All participants agreed that oncology providers should not be leading cost conversations. Patients and caregivers identified social workers or financial advisors as most equipped to communicate about cost. Participants emphasized timely cost conversations, ideally around the time of diagnosis. Participants favored various metrics of financial impact beyond overall costs of care including disability, days lost from work, and out-of-pocket expenses.; Conclusion: Cost transparency should be incorporated into usual care; however, there are several challenges to making cost conversations a part of everyday practice. Patients and family members need resources related to cost to aid in decision-making and those delivering cost information should have competency in oncology, financial advisement, and patient-centered care.

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Factors associated with family functioning among people with a diagnosis of schizophrenia and primary family caregivers

Introduction: Families provide frontline caregiving support for people with a diagnosis of schizophrenia. However, research primarily addresses correlates of family functioning from primary family caregivers' perspectives.; Aim: To examine perceived family functioning, particularly its concordance within patient-caregiver dyads, and associated factors in families of people living with schizophrenia.; Methods: A cross-sectional, descriptive correlational design was used. A total of 133 dyads of patients and primary family caregivers from inpatient psychiatric rehabilitation services participated. Descriptive statistics, independent sample t test, one-way ANOVA, Pearson's correlation coefficients, Intraclass correlation coefficient, and stepwise multiple linear regression analyses were applied.; Results: Family functioning was perceived as impaired by patient-caregiver dyads, and there existed a concordance in this regard. Patients' and family caregivers' education levels, patients' suicidality, number of previous hospitalisations, and quality of family-centred care correlated with patients' and primary family caregivers' family functioning.; Discussion: Findings highlight the importance of patient- and family-reported family functioning with implications to address individual and collective concerns.; Implications For Practice: Evidence-based family interventions are crucial for assisting vulnerable families in promoting family functioning. Mental health nurses should facilitate collaboration and open dialogue concerning perspectives of patients and families to improve delivery of comprehensive mental health care.

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Facilitating pathways to care: A qualitative study of the self-reported needs and coping skills of caregivers of young adults diagnosed with early psychosis

Introduction: Caregivers play a critical role in detecting and managing psychotic symptoms before young people diagnosed with early psychosis present to care. Little is known about the specific needs of caregivers in navigating pathways to care for their loved one.; Aim: The purpose of this study is to understand the needs of family caregivers and their ways of coping on the pathway to care for early psychosis.; Method: Twenty family caregivers of individuals diagnosed with early psychosis participated in three focus groups that explored caregiving needs provision for early psychosis. Thematic analysis was conducted.; Results: We identified four major themes: education and skill training; raising wider awareness, such as police offers and teachers; adopting technologies for coping; effective coping strategies.; Implications For Practice: These findings provide important insights into caregiving needs and the ways for nurses to address those needs and better equip carers to recognize early symptoms, monitor behavior changes, and navigate care to support people with first episode psychosis. Nursing researchers can use the information to develop on-demand and tailored family-centered intervention in addressing caregivers' needs in education, increasing awareness of early psychosis, and fostering effective coping strategies.

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Exploring perceptions and practices of cancer care among caregivers and care recipients of breast cancer in India

Background: Cancer care is physically and psychologically challenging both for care recipients and caregivers. Caregiving in cancer is an area that needs urgent attention in India. Much of caregiving literature in India is limited to mental illnesses. This study thus examines the perceptions and practices of psychological caregiving among caregivers and care recipients of breast cancer in India.; Methods: Participants were interviewed with the aid of a semi-structured qualitative interview guide. Participants included 39 caregivers and 35 care recipients in different breast cancer stages. Interviews were transcribed, translated to English, coded and themes were derived for further analysis. Informed consent from participants, and ethical clearance and permission from a tertiary hospital was obtained prior to data collection.; Results: Psychological caregiving as perceived by the participants included actions such as encouraging, convincing care recipients, companionship, and maintaining a stress free environment. Caregivers in particular felt that psychological caregiving meant, reacting calmly to sensitive queries of non-family members, providing emotional support to other family members and involvement in religious activities. Taking on such diverse responsibilities gave rise to several unmet psychological needs such as motivation and support in decision-making from other family members.; Conclusion: Irrespective of the status (caregiver or care recipient), participants in this study felt the need for structured counselling services to be incorporated into the standard care protocol. This is an area that needs to be further explored in the context of the breast cancer caregiver and care recipient dyad. 

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Exploring Information and Referral Needs of Individuals with Dementias and Informal Caregivers in Rural and Remote Areas

Objectives: The provision of information and referral (I&R) and connection to support services is crucial for individuals with Alzheimer's disease and related dementias (ADRD) and their informal caregivers, especially in rural and remote regions where care and support resources may be limited. The purpose of this study was to develop a deeper understanding of needs for I&R from community stakeholders across a rural and remote state. Methods: A series of town hall meetings were conducted across ten communities in a frontier state. Results: Participants were 175 adults with a mean age of approximately 60 years (SD = 15 years); a majority were non-Hispanic white, female, and self-identified as informal caregivers. Three themes emerged as primary areas of need: (1) to address stigma related to ADRD; (2) to improve the availability of dementia-related I&R; and (3) to efficiently disseminate dementia-related I&R. Conclusions: Findings suggest the importance of a single point of access for I&R with presence in local communities as well as initial and ongoing assessment and provision of appropriate I&R throughout the course of ADRDs. Clinical Implications: Existing community resources and funding support should be leveraged for multiple points and means of access to reliable I&R.

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Experiences and support needs of informal caregivers of people with multimorbidity: a scoping literature review

Objective: Describe and synthesise existing published research on the experiences and support needs of informal caregivers of people with multimorbidity. Design: Scoping literature review. Primary database and secondary searches for qualitative and/or quantitative English-language research with an explicit focus on informal carers of people with multimorbidity (no date restrictions). Quality appraisal of included papers. Thematic analysis to identify key themes in the findings of included papers. Results: Thirty-four papers (reporting on 27 studies) were eligible for inclusion, the majority of which were rated good quality, and almost half of which were published from 2015 onwards. The review highlights common difficulties for informal carers of people with multiple chronic illnesses, including practical challenges related to managing multiple health care teams, appointments, medications and side effects, and psychosocial challenges including high levels of psychological symptomatology and reduced social connectedness. Current gaps in the literature include very few studies of interventions which may help support this caregiver group. Conclusion: Interest in this research area is burgeoning. Future work might fruitfully examine the potential benefits of audio-recorded health care consultations, and digitally delivered psychosocial interventions such as online peer support forums, for supporting and enhancing the caring activities and wellbeing of this caregiver group. 

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Effects of supporting patients with dementia: A study with dyads

Purpose: This study aimed to examine the factors associated with the development of higher burden in informal caregivers of patients with dementia, using dyadic data.; Design and Methods: Seventy-two dyads of patients with dementia and their informal caregivers were assessed, the former in terms of behavioral-psychological symptoms and autonomy, the latter in terms of burden and individual needs.; Findings: Caregivers at risk for developing higher burden are those who are female, whose care recipient present psychiatric symptoms and lower autonomy, and those who recognize the need for more information/support.; Practice Implications: Interventions should offer caregivers the tools to provide care, maintaining their psychological well-being. Interventions should target not only common aspects of caregiver burden but also the specificities of caring for a person with dementia.

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Die häusliche Situation eines Ehepaares Challenges in dementia care at home - The situation at home of a married couple

Background: People with dementia and their relatives are faced with major challenges due to complex dementia symptoms. Families need information and counselling in order to find adequate dementia care services tailored to their needs. Aim: This case report's objective is to exemplify the domestic situation of a married couple who is faced with significant challenges within the family and the care system due to the husband's dementia and Parkinson's disease. Methods: The Dementia Care Nurse project included case monitoring; by means of different assessments relevant information was recorded and the family's situation described. Results: The family's problems and their need for support were multifaceted and entailed reimbursement of costs, application for care services as well as management of challenging behaviours and reduction of the caregiver's psychosocial burden. Conclusions: The family, particularly the spouse caregiver, was effectively supported in meeting the challenges of dementia, e. g. by drawing on professional services and sorting out entitlement to benefits. From the perspective of the experience in the project, independent counselling structures such as a case management approach are indispenable in order to stabilise the domestic situation.

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Canadian Stroke Best Practice Recommendations: Rehabilitation, Recovery, and Community Participation following Stroke. Part Two: Transitions and Community Participation Following Stroke

The sixth update of the Canadian Stroke Best Practice Recommendations for Transitions and Community Participation following Stroke is a comprehensive set of evidence-based guidelines addressing issues faced by people following an acute stroke event. Establishing a coordinated and seamless system of care that supports progress achieved during the initial recovery stages throughout the transition to the community is more essential than ever as the medical complexity of people with stroke is also on the rise. All members of the health-care team engaged with people with stroke, their families, and caregivers are responsible for partnerships and collaborations to ensure successful transitions and return to the community following stroke. These guidelines reinforce the growing and changing body of research evidence available to guide ongoing screening, assessment, and management of individuals following stroke as they move from one phase and stage of care to the next without "falling through the cracks." It also recognizes the growing role of family and informal caregivers in providing significant hours of support that disrupt their own lives and responsibilities and addresses their support and educational needs. According to Statistics Canada, in 2012, eight million Canadians provided care to family members or friends with a long-term health condition, disability, or problems associated with aging. These recommendations incorporate aspects that were previously in the rehabilitation module for the purposes of streamlining, and both modules should be reviewed in order to provide comprehensive care addressing recovery and community reintegration and participation. These recommendations cover topics related to support and education of people with stroke, families, and caregivers during transitions and community reintegration. They include interprofessional planning and communication, return to driving, vocational roles, leisure activities and relationships and sexuality, and transition to long-term care.

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Barriers and facilitators to cancer treatment adherence for older Rural African Americans: Understanding the experience from the view of patients and their caregivers

The purpose of the present study was to understand the barriers that a particularly vulnerable sub-population of older adults experience in adhering to cancer treatments in rural eastern North Carolina. Qualitative descriptive interviews were completed with 16 individuals (8 cancer patients and their caregivers) about the challenges they face in adhering to cancer treatments. Three themes emerged based on the analysis which included transportation and financial barriers, and assistance that facilitated patients to adhere to treatment protocols. Transportation barriers were those associated with both the formal and informal systems. Financial barriers were related to costs associated with treatment. Participants also reported on ways in which adherence was facilitated via both formal and informal means. Our findings support those of previous research on treatment adherence and add information on the actions patients take in response to barriers that can negatively impact their disease trajectory. The knowledge gained can inform service providers about the issues in treatment adherence and help identify interventions that could support caregivers and patients to circumvent such challenges. 

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Challenges and needs of informal caregivers in elderly care: Qualitative research in four European countries, the TRACE project

Background: Providing informal care may affects caregivers' life in different ways. Determining the needs of caregivers and supporting them can improve both the quality of life of the caregivers, as well as the elderly they take care of. Objective: To explore the experiences and needs of the informal caregivers in four countries. Design: Qualitative research method was used in the study. Methods: The qualitative data was collected through focus groups and individual interviews between December 2016–May 2017. In all countries interviews were conducted in the mother language of the informants. Informants of the qualitative research were adult people who take primary care of an individual with chronic diseases, aged 65 years or older. Data were collected from 72 informal caregivers from four European countries. Inductive content analysis was performed. Results: Informal caregivers identified 2 themes, 5 subthemes, 19 categories and 7 subtcategories. The themes highlighted two major issues: informal caregiver's challenges and needs related to the management of care of elderly and caregivers' personal needs. Conclusion: The important and charming results of the present study are, difficulties of managing caregiver's own life, and coping with emotions are common in four countries. Identifying challenges and needs of informal caregivers enable healthcare professionals to develop care strategies and plan interventions focused to support and help to reduce the burden of care for elderly with chronic diseases. 

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When Death With Dementia Is "A Memory Seared in My Brain": Caregivers' Recommendations to Health Care Professionals

The purpose of this study is to determine family caregivers' recommendations for professional health care professionals on how to help prepare them for the death of an elder with dementia. Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Three primary themes emerged: (a) Educate Caregivers, (b) Lead Caregivers, and (c) Provide a Caring and Compassionate Presence. The results highlight the importance of various health care professionals' roles in preparing family caregivers for a death. In doing so, both the dying and their caregivers may have a better end-of-life experience with improved bereavement outcomes.

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What information and resources do carers require pre and post bereavement in the acute hospital setting? A rapid review

Purpose Of Review: This mixed-method, rapid review of published research from 2014 to 2019 aims to explore the experiences of pre and postbereaved carers, and the information that they receive in the acute hospital setting. The quality of articles was evaluated using a standardized quality matrix. The techniques of conceptual analysis and idea mapping were used to create a structured synthesis of the findings.; Recent Findings: From the initial search of 432 articles, ten studies met the inclusion criteria for this review. These studies generated data from 42 patients, 1968 family/carers and 139 healthcare staff. Themes that were generated from a synthesis of the included articles were clear and timely communication, workforce provision and environment.; Summary: This review has highlighted the need for improvements in information provision for carers as part of end of life care. Furthermore, the need for specific staff education and training to enable staff to confidently communicate with dying patients and their relatives in the acute setting is also warranted. Understanding and addressing gaps in knowledge and practice are essential to develop strategies in this complex area. Simple strategies can be implemented to improve the care of carers both pre and post bereavement in acute care.

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What do caregivers value and is there agreement in perception of met needs between nurses and caregivers?

Introduction: There is an increasing reliance on informal caregivers to continue the care of patients after discharge. This is a huge responsibility for caregivers and some may feel unprepared for the role. Without adequate support and understanding regarding their needs, patient care may be impeded. This study aimed to identify the needs valued by caregivers and if there was agreement between acute care nurses and caregivers in the perception of whether caregiver needs were being met. Methods: We conducted face-to-face interviews with 100 pairs of acute care nurses and caregivers. Participants were recruited from inpatient wards through convenience sampling. Questionnaires included demographic data of nurses and caregivers, patients' activities of daily living, and perception of caregiver needs being met in six domains of care. Independent t-test was used to compare mean values in each domain, and intraclass correlation coefficient was used to compare agreement in perception. Results: Caregivers valued reassurance the most. Three domains of care needs showed significant differences in perception of caregiver needs being met:reassurance (p = 0.002), honesty and timeliness (p = 0.008), and kindness and genuine care (p = 0.026). There was poor agreement in all six domains of caregiver needs being met between nurses and caregivers. Conclusion: Although caregivers valued reassurance the most, there was poor agreement between acute care nurses and caregivers in the perception of caregiver needs being met. Hence, more attention should be paid to the caregiver's needs. Further studies can examine reasons for unmet caregiver needs and interventions to improve support for them.

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Rare health condition 27: Mayer-Rokitansky-Küster-Hauser syndrome; and the role of informal caregivers

The purpose of this series is to highlight a range of rare health conditions. Rare health conditions are those that affect no more and usually less than 1 person in every 2000 and many HCAs and nurses will encounter some of these conditions, given the high number of them. This 27th article will explore one of these conditions—Mayer-Rokitansky-KüsterHauser syndrome—and the role and support needs of the ‘informal’ family caregiver.

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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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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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Needs of people with dementia and their informal caregivers concerning assistive technologies: A scoping review

Background and objective: Assistive technologies might be a suitable option for supporting people with dementia and their informal caregivers. To avoid "one-fits-all"-solutions and to design useful technologies, it is essential to consider the end-users' needs. The objective of this review was to examine the needs of people with dementia and their informal caregivers with regard to assistive technologies. Methods: We conducted a scoping review based on a comprehensive literature search in databases, handsearching, and free web searching. Additionally, we performed citation tracking of included studies. We included all types of study designs. Two researchers independently selected the studies. The results were thematically categorised by two researchers. Results: The search yielded 7160 references. 18 of 24 included studies were qualitative. The studies had been conducted in 13 different countries, mostly in Europe. The sample size ranged between two and 270 participants. Most of the studies involved people with dementia as well as informal caregivers. The analysis resulted in eleven themes. The themes could be assigned to three domains: "needed technologies", "characteristics of needed technologies", and "information about technologies". Conclusions: The results might guide future usage, development and research addressing end users' needs with regard to assistive technologies.

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A Mobile Health App (Roadmap 2.0) for Patients Undergoing Hematopoietic Stem Cell Transplant: Qualitative Study on Family Caregivers' Perspectives and Design Considerations

Background: Hematopoietic stem cell transplantation (HCT), also referred to as blood and marrow transplantation (BMT), is a high-risk, but potentially curative therapy for a number of cancer and noncancer conditions. BMT Roadmap (Roadmap 1.0) is a mobile health app that was developed as a family caregiver-facing tool to provide informational needs about the health status of patients undergoing inpatient HCT.; Objective: This study explored the views and perceptions of family caregivers of patients undergoing HCT and their input regarding further technology development and expansion of BMT Roadmap into the outpatient setting (referred to as Roadmap 2.0).; Methods: Semistructured qualitative interviews were conducted among 24 family caregivers. Questions were developed from existing literature coupled with prior in-depth observations and interviews in hospital-based settings to explore the study objectives. Participants were recruited during routine outpatient clinic appointments of HCT patients, and all interviews were conducted in the participants' homes, the setting in which Roadmap 2.0 is intended for use. A thematic analysis was performed using a consistent set of codes derived from our prior research. New emerging codes were also included, and the coding structure was refined with iterative cycles of coding and data collection.; Results: Four major themes emerged through our qualitative analysis: (1) stress related to balancing caregiving duties; (2) learning and adapting to new routines (resilience); (3) balancing one's own needs with the patient's needs (insight); and (4) benefits of caregiving. When caregivers were further probed about their views on engagement with positive activity interventions (ie, pleasant activities that promote positive emotions and well-being such as expressing gratitude or engaging in activities that promote positive thoughts, emotions, and behaviors), they preferred a "menu" of positive activities to help support caregiver health and well-being.; Conclusions: This study involved family caregivers as participants in the development of new components for Roadmap 2.0. Our research provided a further understanding of the many priorities that hematopoietic stem cell transplant family caregivers face while maintaining balance in their lives. Their schedules can often be unpredictable, even more so once the patient is discharged from the hospital. Our findings suggest that expanding Roadmap 2.0 into the outpatient setting may provide critical caregiver support and that HCT caregivers are interested in and willing to engage in positive activities that may enhance well-being and attenuate the stress associated with caregiving.; International Registered Report Identifier (irrid): RR2-10.2196/resprot.4918

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Limited engagement in, yet clear preferences for advance care planning in young-onset dementia: An exploratory interview-study with family caregivers

Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers' preferences for how to ideally engage in the process with patients, family and professionals. Design: A qualitative study was conducted: we analysed semi-structured interviews (n = 15) through the method of constant comparative analysis. Setting/participants: We included Flemish family caregivers of persons with young-onset dementia. Results: Plans for the future typically concerned non-medical affairs. Participants' limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients' cognitive competence. However, endorsement for advance care planning showed from respondents' preferences that it should be initiated timely, by a third party, and emphasize patients' remaining capacities. Finally, the need for information and high-quality care emerged. Conclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.

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"It's More than Just Needing money": The Value of Supporting Networks of Care

It is well established in research, practice, and policy that unpaid caregivers (family and friends of people with care needs) experience stress in their role. Supports that have been put in place by policy planners and program developers to support caregivers may not be accessed by caregivers at all or may do little to reduce their stress. Accessing personal resources (education, finances), in addition to social resources (individual connections) and societal resources (community supports) are critical in fostering resilience in caregivers (helping them adapt to stress and adversity). Social capital theorists argue that creating connections at various levels can improve access to resources. This research, through qualitative interviews (n = 21), identifies the different levels of resources required to address the needs of caregivers. Our findings indicate that interventions that focus on access to personal-level resources (education, funding) are important, but are on their own insufficient. Of more importance were interventions that work to improve relationships between formal providers and families; access to interdisciplinary teams; cross-sectoral collaborations; and inter-organization relationships, highlighting that a system that works together is likely to improve caregivers' access to resources.

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Integrating Family Caregivers of People With Alzheimer's Disease and Dementias into Clinical Appointments: Identifying Potential Best Practices

Family caregiver engagement in clinical encounters can promote relationship-centered care and optimize outcomes for people with Alzheimer's disease and related dementias (ADRD). Little is known, however, about effective ways for health care providers to engage family caregivers in clinical appointments to provide the highest quality care. We describe what caregivers of people with ADRD and people with mild cognitive impairment (MCI) consider potential best practices for engaging caregivers as partners in clinical appointments. Seven online focus groups were convened. Three groups included spousal caregivers (n = 42), three included non-spousal caregivers (n = 36), and one included people with MCI (n = 15). Seven potential best practices were identified, including the following: "acknowledge caregivers' role and assess unmet needs and capacity to care" and "communicate directly with person with ADRD yet provide opportunities for caregivers to have separate interactions with providers." Participants outlined concrete steps for providers and health care systems to improve care delivery quality for people with ADRD.

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Informal caregivers' experiences of caring for persons with dementia in Estonia: A narrative study

This paper presents the results of a qualitative study aimed at exploring the experiences and needs of informal caregivers of persons with dementia and identifying caregiver expectations for support. The research was based on phenomenological and social constructionist approaches; it also took experience-centred and culturally oriented approaches to narratives. It was conducted in Estonia in 2017 by means of unstructured in-depth interviews with 16 informal caregivers who had relatives with dementia. The narrative approach used in this study proved to be an appropriate and valuable method to understand the situations of the caregivers of the people with dementia, in identifying their needs and expectations, and in developing social understanding for caregivers. The results are divided under four thematic headings: awareness of dementia; process of caregiving and different caregiving roles; influence of caregiving on personal life; and expectations of empowerment. We found that it is necessary to raise public awareness of dementia and develop person-centred support services for the people living with dementia.

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Improving the Medical Assistance in Dying (MAID) process: A qualitative study of family caregiver perspectives

Objective: The road to legalization of Medical Assistance in Dying (MAID) across Canada has largely focused on legislative details such as eligibility and establishment of regulatory clinical practice standards. Details on how to implement high-quality, person-centered MAID programs at the institutional level are lacking. This study seeks to understand what improvement opportunities exist in the delivery of the MAID process from the family caregiver perspective.; Method: This multi-methods study design used structured surveys, focus groups, and unstructured e-mail/phone conversations to gather experiential feedback from family caregivers of patients who underwent MAID between July 2016 and June 2017 at a large academic hospital in Toronto, Canada. Data were combined and a qualitative, descriptive approach used to derive themes within family perspectives.; Result: Improvement themes identified through the narrative data (48% response rate) were grouped in two categories: operational and experiential aspects of MAID. Operational themes included: process clarity, scheduling challenges and the 10-day period of reflection. Experiential themes included clinician objection/judgment, patient and family privacy, and bereavement resources.; Significance Of Results: To our knowledge, this is the first time that family caregivers' perspectives on the quality of the MAID process have been explored. Although practice standards have been made available to ensure all legislated components of the MAID process are completed, detailed guidance for how to best implement patient and family centered MAID programs at the institutional level remain limited. This study provides guidance for ways in which we can enhance the quality of MAID from the perspective of family caregivers.

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Family carers' perspectives of managing activities of daily living and use of mHealth applications in dementia care: A qualitative study

Aim: To examine the needs, barriers and challenges experienced by family carers of people with dementia concerning the management of their care recipients' functional disabilities, and their experiences and opinions of using mobile health (mHealth) applications in health information seeking.; Background: Functional disability is a significant problem among people with dementia and management can be challenging for family carers. Evidence suggests that mHealth applications can support knowledge needs of patients and families.; Design: A qualitative descriptive exploratory study.; Methodology: In-depth interviews were conducted with a purposive sample of family carers using a semi-structured interview guide. An inductive thematic analysis method was used. The COREQ reporting guideline was followed.; Results: Five spousal and five child carers participated in this study. Four key themes were identified: (a) Challenges faced that contribute to psychological distress and burden; (b) Essential role of support systems in dementia care; (c) Information and educational needs of family carers, and (d) Experiences and attitudes of mHealth applications as an educational and supportive resource.; Conclusion: Providing functional care is demanding, challenging and stressful, and leads to carer burden. The complexity of dementia is a barrier in the organisation of functional care and access to a support network is vital to care provision. The information needs of family carers can potentially be addressed through an mHealth application.; Relevance To Clinical Practice: This study provides important information on family carers' needs, and the barriers and challenges related to functional care for people with dementia. Findings from this study can assist nurses and other health professionals in the planning of educational and supportive programs for family carers. Furthermore, the use of mHealth applications could positively contribute to the delivery of these programs.

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Family caregivers' perspectives on communication with cancer care providers

Purpose/Objectives: Family caregivers of individuals living with cancer are often highly involved in communication with healthcare teams, yet little is known about their experiences, needs, and preferences in this role. To address this gap in the knowledge base, researchers sought to explore family caregivers' perspectives on communication with oncology care providers. Design and Methods: Researchers conducted a secondary inductive thematic analysis of qualitative interviews originally collected as part of a randomized clinical trial of a supportive intervention for family caregivers of patients with cancer (N = 63). Participants: Participants were family caregivers of adult patients with cancer. Most were patients' spouses/long-term partners (52.3%) or adult children/grandchildren (29.2%). Caregivers of patients with all cancer types and stages of disease progression were eligible for study enrollment. Findings: Caregivers valued communication with healthcare providers who were attentive, genuine, broadly focused on patients and caregivers' experiences, sensitive to unmet information needs, and responsive to the potentially different communication preferences of patients and caregivers. Interpretation: Family caregivers expressed a strong preference for person-centered communication, conceptualized as communication that helps healthcare providers meet the needs of patients and caregivers both as individuals and as an interdependent unit of care, and that acknowledges individuals' experiences beyond their prescribed roles of "cancer patient" and "caregiver." Implications for Psychosocial Oncology Practice: Psychosocial oncology providers' strong orientation to the biopsychosocial and spiritual aspects of cancer care delivery make them uniquely positioned to support family caregivers. Findings suggest that providers should explicitly communicate their commitment to both patient and family care, involve family caregivers in psychosocial assessment activities and subsequent intervention, and strive to honor patients and caregivers' potentially different communication preferences. 

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Experiencing the care of a family member with Crohn's disease: a qualitative study

Objectives: To explore the experiences of caregivers living with relatives affected by Crohn's disease (CD) in a context in which the family provides social support.; Design: A qualitative study based on a phenomenological approach was conducted through in-depth interviews.; Setting: Participants living in Alicante (Spain) were recruited Participants: Eleven family caregivers of people with CD were interviewed.; Methods: The in-depth interviews took place in the participants' homes and were audio recorded and then transcribed for a qualitative thematic analysis.; Results: Five themes and accompanying subthemes were identified: (1) adaptation to the caring experience, (2) dichotomy 'with or without me', (3) unending burden, (4) need for knowledge and control of the disease, and (5) getting used to CD and normalising life.; Conclusion: The findings contribute to an increase in the knowledge and comprehension of the experience of being the caregiver of a relative with CD, which could be useful for professionals towards improving the quality of the CD caring process. Due to the temporal dimension of CD with frequent bouts of exacerbation and remission, family caregivers must adapt and acquire skills during chronic illness evolution. Moreover, the lack of family caregivers' inclusion and follow-up within the Spanish health system makes them feel invisible and useless, which may contribute to caregivers' burdens.

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Experiences of informal caregivers after cardiac surgery: a systematic integrated review of qualitative and quantitative studies

Objectives: To provide a comprehensive synthesis of informal caregivers' experiences of caring for a significant other following discharge from cardiac surgery.; Design: Systematic integrated review without meta-analysis.; Data Sources: A bibliographic search for publications indexed in six databases (Cochrane Library, CINAHL, MEDLINE, EMBASE, AMED and PsycINFO), including a scan of grey literature sources (GreyNet International, Google Scholar, Web of Science, WorldCat and the Clinical Trials Registry) was conducted in October 2018.; Eligibility Criteria For Selecting Studies: Studies were included if they described views and perspectives of informal caregivers of cardiac surgery patients (non-intervention studies (qualitative and quantitative)), and the effectiveness of interventions to evaluate support programme for informal caregivers of cardiac surgery patients (intervention studies).; Results: Of the 4912 articles identified in searches, 42 primary research studies were included in a narrative synthesis with 5292 participants, including 3231 (62%) caregivers of whom 2557 (79%) were women. The median sample size across studies was 96 (range 6-734). Three major themes emerged from the qualitative study data: (1) caregiver information needs; (2) caregiver work challenges and (3) caregivers adaption to recovery. Across the observational studies (n=22), similar themes were found. The trend across seven intervention studies focused on caregiver information needs related to patient disease management and symptom monitoring, and support for caregivers to reduce symptoms of emotional distress.; Conclusion: Informal caregivers want to assist in the care of their significant others after hospital discharge postcardiac surgery. However, caregivers feel insecure and overwhelmed and they lack clear/concise discharge information and follow-up support during the early at-home recovery period. The burden of caregiving has been recognised and reported since the early 1990s, but there remains a limited number of studies that assesses the effectiveness of caregiver interventions.; Prospero Registration Number: CRD42018096590.

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End-of-Life Communication Between Providers and Family Caregivers of Home Hospice Patients in a Rural US-Mexico Border Community: Caregivers' Retrospective Perspectives

Introduction: Family caregiver-provider communication is essential to making an effective hospice care transition for patients. Despite the importance of this topic, there is little information about how caregivers in rural US-Mexico border regions navigate hospice care transition and their needs. This study explores the family caregivers' experience relating to their end-of-life (EOL) communication and needs for hospice care transition.; Methods: In-depth interviews using qualitative methods were conducted with 28 informal caregivers of patients who are enrolled in home hospice care in a rural US-Mexico border region. Thematic analysis was applied to analyze the data.; Results: Qualitative themes that emerged include (1) lack of/insufficient EOL communication and (2) informational needs, including (a) signs of symptom changes, (b) EOL treatment options and goals of care, and (c) hospice care and its benefits. Limited caregiver-provider EOL communication was observed, in which the majority of the caregivers (n = 22, 78.6%) were informed of the patient's terminal condition, but only half (n = 15, 53.6%) had a discussion with the providers about hospice care.; Conclusion: Timely EOL communication between caregivers and the providers is key to the patient's optimal transition to hospice care. Providers need to be aware of the caregivers' informational needs relating to patient symptoms and health condition as well as hospice care. It is important to be aware of the impact of cultural values on hospice care placement. A clear explanation about the purpose and functions of hospice care and its benefit can better guide the family caregivers in making hospice care decisions.

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The emotional and mental health needs of young carers: what psychiatry can do

Aims and Method: To review the literature on the emotional and mental health needs of young carers of parents with mental illness and the extent to which such needs are recognised and supported by professionals. Three databases were systematically searched from 2008 to 2018, and five studies met the inclusion criteria.; Results: The key findings were that young caregivers had a significantly higher dose-response mortality risk than their peers; were at increased risk of mental health difficulties, especially where the ill family member was a parent and had mental illness or misused substances; were overlooked by professionals owing to a lack of awareness; but could derive benefits from their caring role when appropriately supported.; Clinical Implications: Young carers are at increased risk regarding emotional and mental health needs; this risk could be mitigated by professionals recognising the young carer's role and including them in their parent's treatment plan.

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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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Determining the Needs of Family Caregivers of Stroke Patients During Inpatient Rehabilitation Using Interview, Art, and Survey

The purpose of this study is to explore the needs of family members at the bedside of stroke patients (n = 12) admitted to an inpatient rehabilitation facility (IRF). Family members' needs were determined through semistructured interviews, "Draw a Bridge" art therapy technique, and the Family Inventory of Needs. Family members described a family-centered approach to care that addressed the following needs: assistance with preparing for discharge, staff caring for family members, communication about the plan of care and what to expect postdischarge, and trusting the care provided by IRF staff. Art therapy revealed that stroke was a crisis with many unmet needs for the interviewer to explore. Descriptive statistical analysis of the Family Inventory of Needs revealed that both met and unmet needs were consistent with the interviews and the interpretations of the drawings. These findings inform the need for interventions during IRF to enhance communication, support, and effective caregiver education amidst the crisis of stroke.

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Coping and Support Needs of Caregivers of the Mentally Ill: A Phenomenological Study in the Philippines

There are currently very few studies exploring the area of mental health in the Philippines. The topic on mental illness remains widely stigmatized that even the concerns of the caregivers of the mentally ill stay unexplored on the background. This qualitative study aims to help families, mental health professionals, and the general community, understand the different coping and support needs of caregivers of the mentally ill. The researchers employed a phenomenological method of identifying the coping and support needs of these caregivers whose mentally ill family members were admitted in a Mental Health Facility in Leyte, Philippines. Data collection was made through in-depth interviews with carers/caregivers/relatives of five (5) mentally ill persons. Library and internet desk research in its related literature were also employed. Results of the study revealed two major themes, namely 1) coping strategies of caregivers of the mentally ill, and, 2) support to caregivers of the mentally ill. In the theme of coping strategies of caregivers of the mentally ill, three sub-themes emerged, namely 1.1) religious practice, 1.2) being productive, preoccupied and proactive, and 1.3) acceptance and resolve. Several support programs and services such as provision of mental health education and counseling regarding facts about the illness, its treatment and management, and leniency on watcher requirements during hospital admission are among the recommended support needs identified by the caregivers of the mentally ill.

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A concerns report survey of physical activity support needs of people with moderate-to-severe MS disability and family caregivers

Purpose: To identify the most pressing needs for community resources to support physical activity participation, determinants of perceived need, and barriers to co-participation in physical activity among people with multiple sclerosis (MS) who have moderate-to-severe disability and the family caregivers providing assistance to such individuals. Methods: Seventy-eight people with MS and 46 family caregivers participated in this cross-sectional survey study, guided by the Concerns Report Methodology. Results: The results show differences between groups in rankings for some need items. However, three need items were prioritized by both people with MS and the family caregivers: (1) information about available resources to support physical activity participation, with Need Indexes of 76.6% and 52.3%, respectively; (2) programs that support joint participation of people with MS together with their caregivers in physical activity, with Need Indexes of 62.0% and 68.9%, respectively; and (3) programs that have affordable total cost of participation, with Need Indexes of 50.7% and 52.3%, respectively. A broad range of factors (i.e., education, living situation, type of community, marital status, employment, and income, as well as comorbidity status) was significantly associated with one or more of these need items. Several modifiable impairment-related, personal and logistical factors were identified by both groups as barriers to co-participation in physical activity. Conclusions: The findings highlight the complexity of developing community resources that target physical activity promotion in MS dyads. Importantly, our findings suggest that resources designed to influence dyadic physical activity participation need to include content that are responsive and tailored to both the needs of the person with MS and the unique needs of the family caregiver. The results also underscore the importance of reinforcing physical activity as a shared behavior and providing information about affordable options for exercising together to the benefit of each individual and the dyad (i.e., partnership). Overall, our findings provide a possible starting point to guide the identification of potential participants that might benefit the most from future intervention development work. MS has life-altering consequences for people with the disease and the family caregivers who support such individuals. Rehabilitation professionals need to reinforce physical activity as a shared behavior and provide information about affordable options for exercising together to the benefit of each individual and the dyad. A "one-size-fits-all" approach is not appropriate, therefore, clinicians need to identify flexible and pragmatic strategies to increase dyadic participation in the presence of unique caregiver and care-recipients barriers that might impede such an increase.

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Characteristics and Consequences of Family Support in Latino Dementia Care

The purpose of this study is to explore variations in family support for Latino dementia caregivers and describe the role of the family in dementia caregiver stress processes. Content analysis is utilized with themes derived inductively from 16 in-depth interviews with Latino caregivers recruited in California from 2002 to 2004. Three types of family support are described: extensive (instrumental and emotional support from family, n = 3), limited (instrumental support from one family member, n = 7), and lacking (no support from family, n = 6). Most caregivers report limited support, high risk for burnout and distress, and that dementia-related neuropsychiatric symptoms are obstacles to family unity. Caregivers with extensive support report a larger family size, adaptable family members, help outside of the family, and formalized processes for spreading caregiving duties across multiple persons. Culturally competent interventions should take into consideration diversity in Latino dementia care by (a) providing psychoeducation on problem solving and communication skills to multiple family members, particularly with respect to the nature of dementia and neuropsychiatric symptoms, and by (b) assisting caregivers in managing family tensions - including, when appropriate, employing tactics to mobilize family support.

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Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. population-based study

Objective: To describe the type of care provided by a nationally-representative sample of informal caregivers, the frequency of unmet supportive care needs, and examine characteristics associated with unmet needs.; Methods: Using data from the Health Information National Trends Survey, we identified caregivers of an adult care recipient. Descriptive statistics examined support provided by caregivers for activities of daily living (ADLs) and instrumental activities of daily living (IADLs) and caregiver perceptions of their needs in five areas: medical/nursing tasks, accessing services, respite care, support groups, and counseling for caregivers. Bivariate statistics examined sociodemographic and caregiver characteristics associated with each need.; Results: Among 316 caregivers, 30.9% reported at least one unmet supportive care need. Caregivers most often provided support for 0-2 ADLs and 5-7 IADLs. Younger age and longer duration of time caregiving were associated with unmet supportive care needs for medical/nursing training (p = 0.02 and 0.04, respectively). Caregivers providing assistance with more ADLs reported needs for respite care support (p=0.03).; Conclusion: Subgroups of caregivers that may be most vulnerable with greater unmet supportive care needs are those that are younger, have provided care for longer, and those assisting with more ADLs. Future research should explore these factors to inform intervention development.

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Caregivers' Need for Support in an Outpatient Cancer Setting

PURPOSE: To investigate the needs of caregivers for individuals with cancer and to gain insight into how to provide support for caregivers. PARTICIPANTS & SETTING: 47 caregivers for patients with cancer in an outpatient setting in Denmark. METHODOLOGIC APPROACH: This qualitative study used focus group interviews. Data were analyzed using a hermeneutics framework and Malterud's systematic text condensation. FINDINGS: Results of the nine focus groups showed the experiences of caregiving. Theme 1 was interdependence, which consisted of the subthemes responsibility, a moral obligation and loneliness and talking. The results also revealed a second theme, different needs for support, which contained three subthemes: support through personal time, support through peers, and support through talking to healthcare professionals. IMPLICATIONS FOR NURSING: Caregivers for individuals with cancer do not distinguish their own needs and perspectives of support from those of the patients. Caregivers' need for support includes having support from peers, talking to healthcare professionals, and having personal time. Support of caregivers should allow for focusing on the family as a unit instead of solely addressing the patient.

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Caregivers' interactions with health care services – Mediator of stress or added strain? Experiences and perceptions of informal caregivers of people with dementia – A qualitative study

Background: There are an estimated 46.8 million people worldwide living with dementia in 2015, being cared for usually by family members or friends (informal caregivers). The challenges faced by informal caregivers often lead to increased levels of stress, burden and risk of care-recipient institutionalisation. Aim: The overarching aim of this study was to explore the experiences and perceptions of informal caregivers of people with dementia when interacting with the health care system, and whether the support received acted as a mediator of caregiver stress. The secondary aim was to investigate healthcare professionals' views and current practice regarding people with dementia and their interactions with informal caregivers. Method: We employed a qualitative research design, using focus groups and one face-to-face interview with a purposive sample of informal caregivers and healthcare professionals in Lincolnshire, UK. Data were collected between March and July 2015. We used the stress-process model of stress in caregivers as a theoretical framework. Results: We interviewed 18 caregivers and 17 healthcare professionals. Five themes, mapped to the stress-process in caregivers' model, captured the main challenges faced by caregivers and the type of support they wanted from health care services. Primary stressors included the challenge of diagnosing dementia; caregivers' needs and expectations of an in-depth knowledge and understanding of dementia from healthcare professionals; and need for carer education. Secondary role strain included lack of support and mismatch of communication and expectations. Caregiver involvement in monitoring care and disease was a potential mediator tool. Conclusions: Fragmentation of dementia care services, lack of training for healthcare professionals and the dearth of information for caregivers means health care services are only partially fulfilling a support role. In turn, lack of support may be intensifying caregiver stress leading to worsening in their health and well-being; thus, potentially increasing the risk of institutionalisation of their care-recipient.

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Bereaved Family Cancer Caregivers' Unmet Needs: Measure Development and Validation

Purpose/background: Accumulating evidence shows that bereaved family caregivers report elevated distress for an extended period, which compromises their quality of life. A first step in the development of programs to enhance bereaved caregivers' quality of life should be determining the needs they experience to manage the loss, and the needs that are not being satisfied. Thus, this study aimed to develop a new measure to assess unmet needs among bereaved family caregivers.; Method: The 20-item Needs Assessment of Family Caregivers-Bereaved to Cancer measure was developed and validated with bereaved cancer caregivers 5 (n = 159) and 8 (n = 194) years after the initial cancer diagnosis of the index patient, when stress in providing care to the patient was assessed.; Results: Exploratory factor analysis yielded two primary factors: unmet needs for reintegration and unmet needs for managing the loss. Bereaved caregivers who were younger and ethnic minority, and who had greater earlier perceived stress of caregiving, reported their needs were more poorly met (t > 2.33, p < .05). The extent to which bereaved caregivers' needs to manage the loss were not perceived as being met was a consistent and strong predictor of poor adjustment to bereavement at both 5- and 8-year marks (t > 1.96, p < .05), beyond the effects of a host of demographic and earlier caregiving characteristics.; Conclusion: Findings support the validity of the Needs Assessment of Family Caregivers-Bereaved to Cancer and suggest that interventions to help bereaved caregivers manage the loss by assisting their transition to re-engagement in daily and social activities will benefit caregivers by mitigating bereavement-related distress years after the loss.

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The Capacity of Learning in the Quality of Life of the Informal Caregiver

Introduction The presence in the home of a dependent family member is a problematic situation for the whole family. By implementing training programs it is possible to achieve health gains and improve care management, as well as increase the capacity to seek information and take responsibility. Objectives To synthesize the effects of training programs of the informal caregiver in a home context in their quality of life. Methods Integrative review of the literature carried out during the month of March 2019, in the databases: Scielo, Mediclatina, Scopus, Cinahl and Medline, through the PICO methodology, whose guiding question was: “What are the effects caused on the quality of life by... [The remainder of the abstract is not freely accessible]

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A Review of the Complex Role of Family Caregivers as Health Team Members and Second-Order Patients

In Palliative Care, the unit of care is the patient and their family. Although members of the health care team often address the family caregiver's opinions and concerns, the focus of care remains on the needs of the patient. The readiness and willingness of the family caregiver is often overlooked as they are expected to assume a complex caregiving role. When family caregivers are not intellectually or emotionally prepared or physically capable, the caregiver is at high risk for serious health issues and cognitive, emotional, and physical decline particularly as caregiving extends over time. Family caregivers are often a neglected and at-risk population. Illustrated through the use of a case study, this article addresses the complex role of family caregivers, as both health team members and second-order patients. It emphasizes the importance of family assessment and interventions to balance the burdens and benefits of family caregiving and protect caregivers' health and well-being.

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Needs management in families affected by childhood-onset dystrophinopathies

Purpose: To collect information about the needs of families affected by childhood-onset dystrophinopathies residing in the United States. Methods: Individuals with an eligible dystrophinopathy were identified by the Muscular Dystrophy Surveillance, Tracking, and Research network. Between September 2008 and December 2012, 272 caregivers completed a 48-item survey about needs related to information, healthcare services, psychosocial issues, finances, caregiver demographics, and the individual’s functioning. Results: Overall, at least 80% of the survey items were identified as needs for more than one-half of caregivers. Among the needs identified, physical health and access to information were currently managed for most caregivers. Items identified as needed but managed less consistently were funding for needs not covered by insurance and psychosocial support. Conclusions: Healthcare providers, public health practitioners, and policymakers should be aware of the many needs reported by caregivers, and focus on addressing gaps in provision of needed financial and psychosocial services.

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Understanding informal caregivers' motivation from the perspective of self-determination theory: an integrative review

Background A long-term illness is stressful both for the person with the diagnosis and for his or her informal caregivers. Many people willingly assume the caregiving role, so it is important to understand why they stay in this role and how their motivation affects their health. Self-determination theory (SDT) is a theory of human motivation that has been successfully applied in human research domains. To our knowledge, there is no literature review on the application of SDT in a caregiver context. A systematic review of the literature could improve the understanding of motivation in caregiver work and contribute to the utility of SDT. Aim To describe and explore empirical studies of caregivers' motivation from the perspective of self-determination theory. Methods An integrative literature review according to Whittemore and Knafl was conducted with systematic repetitive searches in the MEDLINE, Scopus, PsychInfo, PsycNET, Chinal, Cochrane Library and EMBASE databases. The searches were performed from May through December 2018. The PRISMA diagram was used for study selection, and papers were assessed for quality based on the Mixed Methods Appraisal Tool. Data analysis consisted of a four-stage narrative analysis method. Result Of 159 articles, 10 were eligible for inclusion. All studies considered satisfaction of the three basic psychological needs for competence, autonomy and relatedness as essential in predicting the quality of caregivers' motivation and thereby their well-being. In this review, autonomous motivation was the most important determinant of caregivers' well-being. Conclusions Findings showed that SDT can be applied to identify, categorise, explain, predict, promote and support motivation among caregivers. This lends interesting support for SDT and promotes further study and application of the theory as a psychological approach to caregivers' health and health promotion.

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Policy Brief on Ageing No. 22: The challenging roles of informal carers

The number of older people with care or support needs is on the rise across the UNECE region. While there are efforts to expand formal long-term care services to respond to this growing demand, informal care forms the backbone of long-term care (LTC) provision across the UNECE region. There is diversity in the way long-term care provision is organised and financed across the region as well as with regard to the status, recognition and support provided to informal carers. Although informal carers cover an estimated 70 to 95 per cent of all care needs,  they are often called the ‘invisible workforce’ in long-term care systems as they are rarely registered or counted and their status as informal care provider is often not formally recognized. The majority of informal care is provided by women.

By covering for the gaps in both short-term and long-term formal care provision, thus “co-producing” care services alongside professional service providers, informal carers help prevent or delay the need for institutionalization of people in need of care or support and are enabling them to remain living at home. 

It is challenging for informal carers to cover short-term care needs for a family member, neighbour or friend. It becomes even more demanding the longer this activity has to be performed, especially when informal carers might themselves be of advanced age and care recipients themselves. Policy measures are needed to address the growing need for care in a way that prevents strain on families and caregivers and protects their health and well-being. Public policies need to ensure that informal carers will not be forced to reduce or give up paid employment, face social exclusion and ultimately be caught in a poverty trap.

This policy brief focuses on informal carers who provide long-term informal care to older persons. It addresses the policy challenge to support informal carers in a multifaceted way, identifying key challenges faced by informal carers and policy strategies to address them. 

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Will I care? The likelihood of being a carer in adult life

The report finds that 65% of UK adults can expect to care unpaid for a loved one in their lifetime. The findings released in this report add crucial new data. Past studies have often relied on ‘snapshot’ data (which capture a moment in time), or research that shows what caring means for individuals but that is not representative of the whole population. Our new findings are from the highest quality UK surveys, based on data collected over decades from large representative samples of people regularly asked about caring and other aspects of their lives. We hope this new analysis will also contribute to achieving progress for carers, who, across the UK, urgently need better services and more support to manage work and care.

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Transition from child to adult health services: A qualitative study of the views and experiences of families of young adults with intellectual disabilities

Aims and objectives To explore the experiences of the families of young adults with intellectual disabilities at the point of transition from child to adult health services. Background The population of people with intellectual disabilities is changing rapidly, with young people with increasingly complex needs surviving into adulthood and requiring transition from child to adult health services. Design An interpretative qualitative design. Methods Semi-structured interviews were held with ten family carers of young adults with intellectual disabilities and complex care needs, who were in the process of or had recently completed a transition from child to adult health services in Scotland. Data were analysed using thematic analysis. The COREQ checklist was used. Results Transition emerged as a highly emotional and challenging period for family carers. Their experiences were captured in five main themes: “a deep sense of loss,” “an overwhelming process,” “parents making transitions happen,” “a shock to the adult healthcare system” and “the unbearable pressure.” Nurses were often seen as instrumental to counteracting some of these challenges. Conclusions There is an urgent need to respond to the challenges experienced by carers at the point of transition and beyond, by ensuring early and coordinated planning, effective information sharing and communication and clear transition processes and guidelines. A person-centred and family-centred approach is required to minimise negative impact on the health and well-being of the young adult with intellectual disabilities and their carers. Relevance to clinical practice Registered nurses have a key role in providing information and support, along with coordinating care at the time of transition from child to adult health services for young adults with complex intellectual disabilities. It is vital that their input is person-centred and responds effectively to the expert knowledge of family carers, while at the same time ensuring their needs for information and support are also addressed.

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How to improve eRehabilitation programs in stroke care? A focus group study to identify requirements of end-users

Background: A user-centered design approach for eHealth interventions improves their effectiveness in stroke rehabilitation. Nevertheless, insight into requirements of end-users (patients/informal caregivers and/or health professionals) for eRehabilitation is lacking. The aim of this study was to identify end-user requirements for a comprehensive eHealth program in stroke rehabilitation. Methods: Eight focus groups were conducted to identify user requirements; six with patients/informal caregivers and two with health professionals involved in stroke rehabilitation (rehabilitation physicians, physiotherapists, occupational therapists, psychologists, team coordinators, speech therapist). The focus groups were audiotaped and transcribed in full. Direct content analysis was used to identify the end-user requirements for stroke eHealth interventions concerning three categories: accessibility, usability and content. Results: In total, 45 requirements for the accessibility, usability and content of a stroke eRehabilitation program emerged from the focus groups. Most requirements concerned content (27 requirements), followed by usability (12 requirements) and accessibility (6 requirements). Patients/informal caregivers and health professionals each identified 37 requirements, respectively, with 29 of them overlapping. Conclusions: Requirements between stroke patients/informal caregivers and health professionals differed on several aspects. Therefore, involving the perspectives of all end users in the design process of stroke eRehabilitation programs is needed to achieve a user-centered design. Trial registration: The study was approved by the Medical Ethical Review Board of the Leiden University Medical Center [P15.281].

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Comparing the Barriers and Facilitators of Heart Failure Management as Perceived by Patients, Caregivers, and Clinical Providers

Background: Heart failure (HF) management requires the participation of patients, their significant others, and clinical providers. Each group may face barriers to HF management that may be unique or may overlap. Objective: The aim of this study was to compare the barriers and facilitators of HF management as perceived by patients, significant others, and clinical providers. Methods: Participants were recruited from a Veterans Health Administration facility. Eligible patients had a diagnosis of HF (ICD9 code 428.XX), 1 or more HF-related visit in the previous year, and a significant other who was their primary caregiver. Significant others were adults with no history of cognitive impairments caring for patients with HF. Providers were eligible if they cared for patients with HF. All participants completed semistructured interviews designed to elicit barriers to managing HF and strategies that they used to overcome these barriers. Interviews were transcribed and analyzed using latent thematic analysis, and recruitment continued until thematic saturation was attained. Results: A total of 17 couples and 12 providers were recruited. All 3 groups identified poor communication as a key barrier to HF management, including communication between patients and their significant other, between couples and providers, and providers with each other. Significant others noted that the lack of direct communication with clinical providers hindered their efforts to care for the patient. All 3 groups emphasized the importance of family members in optimizing adherence to HF self-management recommendations. Conclusions: Providers, patients, and significant others all play important and distinct roles in the management of HF. Tools to enhance communication and collaboration for all 3 and supporting the needs of significant others are missing components of current HF care.

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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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Influence of time lapse after cancer diagnosis on the association between unmet needs and quality of life in family caregivers of Korean cancer patients

Objective This study explored the association between healthcare needs and quality of life (QoL) of Korean cancer family caregivers according to the time lapse after cancer diagnosis. Methods Self‐administered comprehensive needs assessment tool and EuroQol‐5‐dimension index for 686 cancer family caregivers were classified into four groups according to time lapse after cancer diagnosis (≤12, 13–36, 37–60,>60 months). We estimated the association between unmet needs and QoL by multiple linear regression analyses after adjusting for age, sex, cancer site and caregivers’ comorbid conditions. Results Female or elder caregivers had lower QoL and higher unmet needs. The highest unmet needs existed in healthcare staff domain followed by information/education domain persistently along all periods. QoL of caregivers was significantly associated with family/social support and health/psychological problem during the time lapse of ≤12 months as well as >60 months. Practical support was consistently associated with QoL across all time lapses. Religious/spiritual support and hospital facilities and services showed significant association with QoL only in ≤12 months and >60 months respectively. Conclusions The QoL of Korean cancer family caregivers was differentially associated with their unmet needs according to the time lapse after cancer diagnosis and by specific domains of needs.

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The Family Support Movement and Schizophrenia in India

PURPOSE OF REVIEW: To review the evolution of family support movement for schizophrenia in India and to report perspectives of family caregivers who are running family support groups across the country in the backdrop of recent legislations in India. RECENT FINDINGS: Family support movement started in the 1990s, mostly by family caregivers independently in multiple cities across the country. Apart from periodic support meetings, they have successfully influenced recent legislations to address the felt needs of families. Mental health professionals need to gain skills to work collaboratively with assertive family caregivers to develop services to support those diagnosed with mental illness. Though there is a need for such movement, funding is poor and very few caregivers of persons with schizophrenia are forthcoming to participate. The formation of national federation with government and non-government partnership could help give the required impetus to the family support movement for persons with schizophrenia in India.

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Family caregivers experiences of the pre-diagnostic stage in frontotemporal dementia

Frontotemporal dementia (FTD) is a neurodegenerative disease with symptoms that differs from other dementias. Commonly early symptoms in FTD are changes in personality and behavior, which can be interpreted as psychiatric disease. The delay in FTD diagnosis contributes to the burden of family caregivers. Therefore, it is important to have more knowledge about the pre-diagnostic stage. In this qualitative interview study, we explored fourteen family caregiver's experiences of the pre-diagnostic stage of frontotemporal dementia (FTD). Our findings suggest that the family caregivers experienced the pre-diagnostic stage of FTD as changes in the interpersonal relationship with their loved one. These changes were often subtle and difficult for family caregivers to explain to others. The findings from our study illuminate the importance of medical staff paying attention when a next of kin is concerned about subtle changes in a loved one. The findings also illuminate that awareness of FTD should be raised. 

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Commentary: The psychosocial needs and quality of life of family caregivers of patients with organ transplant

The reviewed study addresses the needs of the family caregivers of transplant patients in Iran and as the title suggests examines both psychosocial needs and quality of life (QoL), the results of which highlighted the importance of the provision of assurance and information for family caregivers.

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Needs-focused interventions for family caregivers of older adults with cancer: a descriptive interpretive study

Purpose: Although family caregivers (FCs) of older adults with cancer (OACs) provide invaluable assistance by fulfilling multiple tasks along the cancer trajectory, evidence suggests that their needs are poorly assessed, and there is a scarcity of supportive interventions that influence their well-being. Viewing these issues as opportunities for improvement, we conducted this qualitative study to understand FCs’ needs and identify promising needs-focused interventions. Methods: This descriptive interpretive qualitative study was conducted in Quebec, Canada, in a French Canadian Oncology Clinic. Participants were FCs who were spouses or adult children (n = 25) of OACs aged 70 years or older. Data were collected via focus groups and were analyzed using an ongoing analytic process following each interview. Results: Three types of needs were of particular importance: information, relationships between FC and others, and care for oneself. The need for information was described in terms of the content, timeliness, and modalities in which information should be verbalized and delivered. The need for relationships specifically targeted health care providers (HCPs), family members, and OACs. The need to care for oneself was recognized as important throughout the cancer trajectory but also represented a challenge. Participants proposed innovative ideas for interventions, resources, and strategies for each type of need. Conclusions: According to our results, HCPs should systematically include FCs into OACs’ care plan through the use of concrete actions such as the “family systems approach” suggested by Duhamel, and integrate a systematic FC’s needs assessment.

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Exploring the usefulness of indicators for referring people with dementia and their informal caregivers to activating interventions: A qualitative analysis of needs assessments

Background: People with dementia (PWDs) and their informal caregivers frequently report difficulties in maintaining their usual activities. We had previously developed a set of indicators to estimate whether dyadic, activating interventions can meet these needs for activity. This study investigates how PWDs and informal caregivers talk about the indicators in interviews for needs assessments, and how professionals identify activity needs and preferences. Our research goal was to explore the usefulness of the indicators for assessing the activity needs of community-dwelling dyads. Such assessments are needed for appropriate referral to activating interventions. Methods: A dementia case manager assessed the needs of community-dwelling PWDs and their informal caregivers; we carried out secondary analyses on the dataset resulting from the audio-tapes and transcripts. We applied qualitative, deductive content analysis because we wanted to identify both explicit and implicit needs and preferences. We used the indicators that we had developed in previous research as codes. Results: Both PWDs and informal caregivers do explicitly mention needs, preferences, and characteristics related to the indicators in the needs assessments. Possible implicit needs and preferences were frequently identified in their stories. Conclusions: Needs-driven care requires high-quality needs assessments. Both PWDs and their informal caregivers need encouragement to express their latent needs and preferences. In addition, latent needs and preferences have to be further explored in needs assessments to find out the real meaning. The outcomes of this study highlight the significance of structured needs assessments for mapping the activity needs of PWDs and their informal caregivers. Many PWDs and informal caregivers reported activity needs, which suggests that activating interventions may be appropriate. The indicators can help professionals identify activity needs so that they can discuss matching activating interventions with the dyad. 

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The support needs of family caregivers of persons with dementia in India: Implications for health services

The World Alzheimer’s Report estimates that 4.1 million people in India have dementia. Caregivers of persons with dementia face physical, psychological, social and financial problems related to caring for a person with dementia. Literature on the caregiving experience however is highly specific to the sociocultural context and cannot be generalized. In low and middle income countries much of the caregiving takes place in people’s homes and is provided by family caregivers. Aim This study aims to explore the needs and challenges of family caregivers in Chennai, India. Method Focus group discussions and in-depth interviews were conducted using a topic guide. Participants were divided based on socio-economic status to ensure homogeneity. An inductive thematic approach was used to analyse and code the data. A total of 19 participants took part in the study. Results The results capture the experience of caregivers of persons with dementia in seeking help and accessing treatment. Priority caregiver needs were identified, including the need for sensitised, skilled health workers, information on dementia and advanced care needs and cost effective services. Conclusion The findings of this study strongly support the need to strengthen health systems capacity, make the health care services dementia friendly and cost effective. The influence of culture in shaping help seeking was evident in our findings. Interventions for caregivers and persons with dementia need to be developed and tested so they might be made fit for purpose and scaled up. It will be important to identify how these services can be adapted for use in low and middle income country resource setting like India. 

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Stakeholder Perspectives on the Biopsychosocial and Spiritual Realities of Living With ALS: Implications for Palliative Care Teams

Context: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS. Objective: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. Methods: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS. Results: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease. Conclusion: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement. 

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Home modifications for older people with cognitive impairments: Mediation analysis of caregivers’ information needs and perceptions of fall risks

Aims and objectives The aims were to (a) identify how many older people with cognitive impairments are living in modified homes and (b) explore associated factors, and (c) examine the mediating effects that their caregivers’ information needs and perceptions of fall risk and other factors. Background Older people and their informal caregivers may consider implementing home modifications as an effective strategy for fall prevention. However, there is a lack of information on which older people's homes receive modifications and the various factors associated with such modifications among community‐dwelling older people with cognitive impairments. Design This cross‐sectional and correlational study utilises a secondary data analysis. Methods The data for this secondary analysis were taken from the 2015 National Online Survey of Caregivers, which includes information provided by 226 adult caregivers for older people with cognitive impairments. Descriptive analyses, hierarchical binary logistic regression and structural equation modelling were performed based on the Andersen and Newman framework of health services utilisation. Results Overall, 46.5% of the older people lived in modified homes. Older people's impaired activities for daily living (ADLs), caregivers’ information needs and perceptions of fall risk were all associated with home modifications (all p values<0.05). Caregivers’ information needs mediated the relationship between impaired ADLs and home modifications (indirect effect = 0.026, p < 0.05), whereas the caregivers’ perceptions of fall risk did not. Conclusions Older people with both cognitive and functional impairments are more likely to modify their home on behalf of care recipient's staying at home. Caregivers’ information needs should thus be prioritized when considering home modifications to facilitate caring for older people with impaired ADLs. Implication for practice Nurses and other healthcare professionals should be prepared to offer appropriate information and comprehensive assessments of older people's conditions with regard to home modifications.

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International perspectives on best practice when working with family carers of people with an intellectual disability from across the life course

In order to maintain an ethos of involvement and collaboration, there is a need for services and professionals to work with carers in ways that complement and enhance their roles so that they are able to maximize their capacity to care for their relative. 

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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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Information, communication, and online tool needs of Hispanic family caregivers of individuals with Alzheimer’s disease and related dementias

Purpose: To identify the information and communication needs of Hispanic family caregivers for individuals with Alzheimer’s Disease and Related Dementias (ADRD) and the manner in which online tools may meet those needs. Methods: We conducted 11 participatory design sessions with 10 English- and 14 Spanish-speaking urban-dwelling Hispanic family caregivers and gathered data using a survey, collage assemblage, and audio and video recordings. Four investigators analyzed transcripts of audio recordings with a coding framework informed by several conceptual models. Results: Participants had an average age of 59.7 years, were mostly female (79.2%), and had cared for a family member with ADRD for an average of 6.5 years. All participants accessed the Internet at least once a week with 75% ≥ daily. Most used the Internet to look up health information. All participants reported caregiver attributes including awareness of the disease symptoms or behaviors. The majority reported information needs/tasks (91.7%), communication needs/tasks (87.5%), and need for online tools (79.2%). Conclusion: Hispanic caregivers of individuals with ADRD reported key information and communication needs/tasks. Only Spanish-speaking participants reported Internet and technology use deficits suggesting the requirement for further technology support. Data show a need for online tools to meet the needs of caregivers. 

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The psychosocial needs and quality of life of family caregivers of patients with organ transplant

Background: Families of patients with organ transplants experience many problems, both with the onset of illness and during the hospitalisation of their relative for an organ transplant. The healthcare providers try their best to give high-quality care to patients. However, they neglect quality of life and psychosocial needs of family caregivers. Aims: This study aimed to assess the psychosocial needs and quality of life of the family caregivers of post-transplant patients and the relationship between these two variables. Methods: This descriptive correlational study was conducted on liver, kidney and bone marrow transplant wards in the largest transplant centre affiliated with a university of medical science in south-eastern Iran. The sample included 230 family caregivers of post-transplant patients, who were selected using quota sampling. Data were collected using the 45-item questionnaire of psychosocial needs (the Critical Care Family Needs Inventory) with five dimensions (assurance, comfort, information, proximity and support), and the Short Form-36 Quality of Life questionnaire with eight scales (physical functioning, physical problems, emotional problems, social functioning, pain, vitality, mental health and perception of health). In the Critical Care Family Needs Inventory, 1 indicates not important and 4 very important. In the Short Form-36 Quality of Life questionaire, 0 indicates the worst health and 100 the best health. Results: The participants rated the mean of their psychosocial needs as important (3.18 ± 0.27). Also, the mean of quality of life of participants was at an undesirable level (45.17 ± 92.66). The psychosocial needs of the caregivers showed a poor, inverse significant relationship with their quality of life (r = −0.16, p = 0.01). Conclusion: The results showed that with increasing psychosocial needs of family caregivers of post-transplant patients, their quality of life declines. Healthcare providers should implement developed plans and appropriate strategies to fulfil psychosocial needs and improve the quality of life of family caregivers of these patients.

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Assistive robots for socialization in elderly people: results pertaining to the needs of the users

Background/aim: Technological solutions can support the elderly, improve their quality of life and reduce isolation and loneliness. The Euro-Japan ACCRA (Agile Co-Creation for Robots and Aging) project has the objective of building a reference co-creation methodology for the development of robotic solutions for ageing. The aim of this study is to provide a pilot qualitative analysis of the real needs of elderly people and their caregivers when exposed to conversational activities with robots and to identify priority needs that should be developed from end-user perspectives. Methods: A qualitative research design was adopted to define a pre-structured questionnaire that was administered to the elderly taking part in the piloting sessions. Three groups of end-users were included: subjects with an age ≥ 60 years, informal caregivers and formal caregivers. Results: The interviews were carried out in Italy and Japan. A total of 17 elderly and 36 caregivers were recruited. Common needs in the two sites were categorized into 3 groups: Communication; Emotion Detection and Safety. General robot acceptance level is good and perception is positive among participants in the pilot sites. Conclusion: A positive perception of the elderly on the application of a robotic solution was found and many are the needs that could be addressed by an appropriate and careful robotic development taking into account the real needs and capabilities of the involved subjects. 

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Utilizing the Advances in Digital Health Solutions to Manage Care in Cancer Patients

In recent years, the clinical context for cancer has changed, and it is now characterized by extended survival rates and more diverse and complex cancer trajectories and symptomatology. The changes in the landscape of cancer care also include a shift towards the home setting or the outpatient setting with an increased amount of care being delivered at home or transferred to the patients themselves and their family caregivers. These changes have also impacted the type and amount of information required by the patients and their caregivers as well as the type of care needs that are to be addressed by health-care professionals. Finally, the transitions within the health-care setting might also create a caring gap that the patient is left to deal with independently or with minimal support. These changes have led to the emergence of innovative digital/technological solutions for supporting patients during their cancer care continuum.

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Psychometric Evaluation of the Caregiver Needs Screen in Neuro-Oncology Family Caregivers

BACKGROUND AND PURPOSE: The informal care demands of primary malignant brain tumor (PMBT) patients include unique issues associated with neurological and cognitive symptoms. Existing caregiver needs questionnaires do not include these disease-specific symptoms, which are particularly distressing. Therefore, we have developed the neuro-oncology Caregiver Needs Screen (CNS) and evaluated its psychometric properties. METHODS: The 32-item instrument was developed based on PMBT caregiver interviews (N = 109) and expert review. The CNS was tested along measures of depression, anxiety, burden, and mastery in 122 PMBT caregivers. Principal components analysis was used to examine item properties and internal structure. Internal consistency reliability and construct validity were assessed. RESULTS: Six subscales were identified with internal consistency ranging between alpha = .653 and .857. Convergent validity was verified by moderate/high correlations between measures of caregiver well-being and CNS scale scores. CONCLUSIONS: Findings provide preliminary evidence of reliability and validity for the CNS. This instrument can be useful when assessing caregivers' needs for supportive care. 

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Measuring the Needs of Family Caregivers of People With Dementia: An Assessment of Current Methodological Strategies and Key Recommendations

While dementia caregivers are regarded as a population with high unmet needs, there is little consensus as to how caregivers’ needs should be conceptualized and measured. This article describes how dementia caregivers’ needs are currently assessed in the scientific literature with the goal of suggesting guidelines for the enhancement of future measurement of caregiver needs. A review of 26 articles identified overarching themes within measurement approaches including variation in methodological rigor, proxy indicators of need, dual needs assessment of caregiver and person with dementia (PWD), and third-party needs assessment. We recommend future research dedicate theoretical attention to the conceptualization and classification of caregivers’ needs to build a stronger foundation for measurement. The measurement development process should capitalize on mixed-methodology and follow instrument development and validation guidelines set forth by measurement theory. Reliable and valid instruments are essential to developing services and policies that address dementia caregivers’ needs. 

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Including Family Caregivers In Seriously Ill Veterans' Care: A Mixed-Methods Study

Family caregivers often serve as unpaid members of the home and community-based care workforce for people with serious illness; as key partners in the home-clinic continuum, they should be included in health care teams. The Campaign for Inclusive Care is an initiative within the Veterans Affairs health care system to improve provider practices for including caregivers of military members in treatment planning and decisions. We defined inclusive care using a literature review, provider interviews, and a caregiver survey. We found that inclusive care involves clear definition of the caregiver role, system policies for inclusion, assessment of caregivers' capacity, explicit involvement of caregivers, and mutuality in caregiver-provider communication. We recommend solutions based on this definition that can inform development of a national caregiver strategy, required of the Department of Health and Human Services by the Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2018.

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Informal caregivers in stroke: Life impact, support, and psychological well-being-A Swedish Stroke Register (Riksstroke) study

Background: Informal caregivers provide a large amount of day-to-day assistance and are crucial for the ability of survivors to recover and adapt to life after stroke.; Aim: The development of caregiver support programs is limited by lack of large long-term follow-up studies. We present a comprehensive study of Swedish stroke caregivers' life situation in relation to degree of functional dependency of the survivor.; Patients and Methods: In 2016, the Swedish Stroke Register, Riksstroke, conducted a long-term follow-up survey on caregivers to patients with stroke three and five years earlier. Items on psychological well-being were adapted from the 36-item short-form health survey and poor outcome was defined using the 36-item short-form health survey reference material. Survivor degree of dependency was indicated by the caregiver as independent, partially dependent, or completely dependent.; Results: A total of 5063 community dwelling dyads were included: 56.5% of survivors were independent, 33.4% partially dependent, and 10.1% completely dependent. Caregiver life impact, need of support, and proportion of poor psychological well-being increased incrementally with survivor degree of dependency. In the completely dependent group where 41.1% of survivors could not be left unattended for more than 1 h, 23.7% of caregivers expressed unmet need of caregiver support; 51.4% reported poor psychological well-being compared to 19.3% in the independent group.; Conclusion: The caregiver situation varies greatly with degree of survivor dependency which makes generalizations of caregiver needs difficult. Our results emphasize the need for integrating support aimed specifically at caregivers to survivors of stroke with a large degree of dependency.

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Cancer, a relational disease exploring the needs of relatives to cancer patients

Purpose : In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients. Methods : Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory. Results : Family members to cancer patients expressed own morbidity connected to high stress levels and difficulties in recognizing own stress due to ongoing comparisons with the cancer patient. Family members were trapped in a momentary terror-like situation where they became their sick relative’s safety net. A percieved inability to improve their loved one’s well being contributed to a feeling of guilt. The longing for it all to end was encumbered with shame since the end included possible death. Conclusions : By recognizing cancer as a disease striking both body and relationships, family members are given precedence over their own struggles, differentiated from the patient’s experiences. We define differences in needs between cancer patients and family members. Family members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment.

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Neurological patients’ and caregivers’ post-discharge challenges explored in a World Café

Problem/background: Post-discharge healthcare for patients with neurological conditions is indicated to be suboptimal. Aim: To capture hospital discharge experiences and ramifications among patients with neurological conditions, and informal caregivers, and their recommended solutions. Methods: A modified World Café was held November 2016. A facilitator moderated structured group discussions about post-discharge challenges, displayed real-time in GroupMap. Using the software's voting, ratings of priority challenges/issues and solutions were tabulated to identify whole group consensus. Findings: Eleven adults with neurological conditions (five females) and four adult informal caregivers (three females) participated. Major post-discharge challenges were: (i) inadequate self-management instruction, (ii) feeling discharged too early, (iii) family pressured to support patient without capacity, (iv) financial impact, (v) difficulties accessing social services, (vi) social isolation, (vii) inadequate support services, and (viii) poor communication with, and between, healthcare providers. Top-ranked solutions were: (i) counseling services at symptom onset, (ii) community neurological nurse referrals to, and liaison with, services, (iii) improved communication with general practitioner, (iv) community neurological nurse facilitating financial assistance, and (v) social worker in pre-diagnostic period facilitating financial assistance and support. Discussion: Peridischarge, patients and informal caregivers face a complexity of information and services, and struggle to self-manage conditions, experiencing burden that jeopardises their health and wellbeing. Proposed solutions to post-discharge challenges emphasise self-management, psychosocial support, care coordination, health system navigation, and communication. Conclusion: Generic community neurological nurses could link hospital and community-based services. Research is required regarding which translational and after hospitalisation care model improves care coordination and continuity, and care recipients’ capacity.

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Informal carers' experiences and feelings during rehabilitation

The purpose of this study was to explore the experiences and feelings of people caring for patients with long-term diseases in a rehabilitation centre. A qualitative research approach was used. Fifteen informal carers were interviewed. The study was conducted in a rehabilitation centre in Greece. Three themes emerged. The first was feelings regarding the patient and the carers themselves, as well as the type of care provided and life at home after discharge from the rehabilitation unit. The second was experiences regarding health professionals and delivered care, and other carers. The third theme was expectations and thoughts about the future. Health professionals should plan and implement support interventions within rehabilitation settings in order to address carers' needs in terms of practical guidance not only within the framework of patient care but also relating to the psychological and physical wellbeing of informal carers.

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Competence and Compassion: Key Elements of Professional Care at the End of Life From Caregiver's Perspective

In the act of caring for and helping people in the end-of-life process, the professional who provides care and assistance must know how to maintain a relationship of closeness, empathy, and compassion for the pain and suffering of the person who is going to die. The objective was to understand, elaborate on, and characterize the key elements of end-of-life care of patients from a caregiver's perspective through a qualitative phenomenological multicenter study. Participants were caregivers who had lost a family member at least 2 months but less than 2 years in the past. The techniques used were 5 discussion groups and 41 in-depth interviews, which included a total of 81 participants. To analyze the information, a protocol developed by Giorgi was followed. Two dimensions or units of meaning, with subdimensions, emerged: (1) Technical competence, with the subdimensions "Control of symptoms" and "Continuity of care," and (2) Compassion, with the subdimensions "Effective/affective communication," "Attitudes of kindness and closeness toward the patient and the family," and "Generosity and personalized flexibility of care." Assistance at the end of life requires the proper preparation of professionals who care for these patients, in addition to a compassionate attitude on the part of professionals and the people accompanying the dying person, that fosters a more humanized and dignified treatment in the dying process.

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Needs of people with dementia and their spousal carers: A study of those living in the community

Objective: To identify care and support needs, as reported by people with dementia and their spousal carers living in the community in metropolitan Western Australia. Methods: An interpretive description approach was utilised. Semi‐structured interviews were conducted with 10 dyads of spousal carers and people with dementia. Comparative analysis was used to develop themes regarding need, which were reviewed using two focus groups of spousal carers. Results: Three major themes were developed through analysis of data from the interviews and were refined by the focus groups: (a) environmental enablers to support care; (b) strong caring relationships; and (c) adaptation of daily life roles. Conclusions: As dementia progresses, continued support to maintain participation in meaningful activity is needed. Strong caring relationships, knowledge and an understanding of dementia among health professionals, service providers and family members were key to maintaining support for the needs of people with dementia and their spousal carers.

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How are caregivers involved in treatment decision making for older people with dementia and a new diagnosis of cancer?

Objective: To explore how caregivers are involved in making treatment decisions for older people living with dementia and a new diagnosis of cancer. Method: A systematic review of PubMed, CINAHL, PsycINFO, Web of Science, and Scopus databases was conducted. Studies recruiting formal or informal caregivers for older people with dementia and a diagnosis of cancer were considered for inclusion. Results: Of 1761 articles screened, 36 full texts were assessed for eligibility, and six were included in the review. This review has identified that health care professionals (HCPs) are often unaware of the coexistence or severity of dementia in cancer patients, and therefore fail to properly address care needs as a result. While caregivers are relied on to help make decisions, they have unmet information needs and feel excluded from decision-making. Conclusion: Treatment decision making in the context of older adults with dementia and a new diagnosis of cancer needs further research. This will help HCPs to understand their needs and improve the experience of decision making for both caregivers and the people that they care for. 

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Experiences and perceptions of spousal/partner caregivers providing care for community-dwelling adults with dementia: a qualitative systematic review

Objective: The objective of this review was to synthesize evidence on the experiences and perceptions of spousal/partner caregivers of community-dwelling adults with dementia.; Introduction: Currently 47 million people in the world have a diagnosis of dementia and this number is predicted to climb to 75 million by 2030. The majority of care is provided by family members, particularly spouses/partners. Quantitative systematic reviews of spouse/partner caregivers demonstrate negative health effects for these caregivers. This review synthesized the qualitative evidence on the experiences of spousal/partner caregivers of people with dementia to further understanding how this care and the context of care contribute to the health and wellbeing of spousal/partner caregivers.; Inclusion Criteria: This review considered qualitative studies that explored the experiences of spousal/partner caregivers providing care for adults with dementia. The focus was on qualitative designs including, but not limited to, phenomenology, grounded theory, ethnography, action research, critical research and feminist research.; Methods: The search strategy used a three-step approach and was aimed at locating both published and unpublished studies. Key databases included: MEDLINE, CINAHL, Embase, PsycINFO, Sociological Abstracts, ISI Web of Science, and Dissertation Abstracts International. Grey literature was searched using keywords from the database searches. The databases were searched from inception to February 2017 and a mix of controlled vocabulary (i.e. MeSH, CINAHL headings) and keywords were used to capture all existing qualitative studies related to the experiences and perceptions of spousal/partner caregivers providing unpaid care for adults with dementia. During the title and abstract screening, only English and French articles were included. The recommended Joanna Briggs Institute approach to study selection, critical appraisal, data extraction and data synthesis was used. Seven of the 10 critical appraisal criteria were deemed essential, with exceptions identified for criteria 1, 6 and 7.; Results: Nineteen studies were included in the review. Study designs included phenomenology (eight), grounded theory (five), qualitative description (four), ethnography (one) and narrative inquiry (one). The total number of participants was 248 (164 women and 84 men). The overall quality of the studies was rated as moderate on the ConQual score, with dependability rated as moderate and credibility rated as high. One hundred and fifty-five findings were aggregated into four categories and two synthesized findings. The two synthesized findings were: "the expectation to care in the midst of uncertainty and unpredictability", and "the caregiver as hostage".; Conclusions: This review provides a comprehensive understanding that can inform spousal/partner caregiver policies and programs. Evidence is required on the experiences and perceptions of caregivers across the gender continuum. Interventions and interventional research that mobilizes the evidence to date is essential for the future of caregivers. The limitations to this review include: the possibility of missed studies, all study participants being in heterosexual relationships, and the majority of participants being Caucasian. Recommendations for practice, policy and research include: the need for awareness of the extent of change in the lives of the person with dementia and the spousal/partner caregiver, the importance of support and respite, the need to tangibly recognize the value of the unpaid caregiver in a way that preserves the health and wellbeing of this group, and research is required that is culturally sensitive and reflects the experiences of the lesbian, gay, bisexual, transgender, transsexual, queer, questioning, intersex, asexual, ally, pansexual (LGBTTQQIAAP) populations.

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Experiences of caregivers of family member with schizophrenia in China: A qualitative study

Purpose: To explore the experience of caregivers of family members with schizophrenia.; Design and Methods: A qualitative approach was adopted to examine the experience of caregivers of people with schizophrenia. The researcher conducted semi-structured interviews with 16 participants recruited through purposive sampling.; Findings: The change findings encompassed five major themes: (a) loss of personal life, (b) mixed emotions, (c) changes in family relationships, (d) the need for professional support and help, and (e) coping strategies.; Practice Implications: Clinicians, including nurses, must be aware of the cultural importance of mental illness, particularly the widespread cultural beliefs and patterns of help-seeking behaviors, to provide culturally sensitive health care and develop empirical strategies for helping both these caregivers and their dependents.

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End‐of‐life priorities of older adults with terminal illness and caregivers: A qualitative consultation

Background: As older adults approach the end‐of‐life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL. Objective: This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care. Method: A descriptive qualitative study involving three focus group discussions (n = 18) and six in‐depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia. Data were analysed thematically. Results: Seven major themes were identified as follows: quality as a priority, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. An underpinning priority throughout the seven themes was knowing and adhering to patient's wishes. Conclusion: Our study highlights that to better adhere to EOL patient's wishes a reorganization of care needs is required. The readiness of the health system to cater for this expectation is questionable as real choices may not be available in acute hospital settings. With an ageing population, a reorganization of care which influences the way we manage terminal patients is required.

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Family Caregivers' Unmet Needs in Long-term Cancer Survivorship

Objectives: To review the family caregivers' unmet needs in the long-term phase of survivorship to identify unique challenges faced by family caregivers.; Data Sources: Research-based articles and published reports.; Conclusion: Family caregivers diverge into three distinct groups in the long-term survivorship phase: those remaining in care, those whose patients have survived and where care is no longer needed, and those whose patients have died. Their primary unmet needs vary by the different caregivership trajectories.; Implications For Nursing Practice: Comprehensive understanding of family caregivers' unmet needs is required to develop family caregiver care plans in long-term survivorship.

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Care for Caregivers: Understanding the Need for Caregiver Support

Most long‐term care for older adults in the United States is provided by informal caregivers (Ahmad, [Ahmad, K., 2012]), the majority of whom experience an intense range of emotions from satisfaction to loneliness. Counselors must consider this emerging population of caretakers and learn methods to encourage clinical services to address their need for support. This article delineates experiences and challenges of informal caregivers and provides suggestions for effective clinical services for caregiver populations.

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Providing Care for Persons with Dementia in Rural Communities: Informal Caregivers' Perceptions of Supports and Services

Dementia is one of the costliest and most time-consuming diseases among older persons. Although informal caregivers provide the majority of care for persons with dementia, little is known about the self-perceived need for social services of caregivers of persons with dementia within rural areas. This pilot study examined the knowledge, access and intent of the practice-oriented service model of caregivers of persons with dementia in rural communities in the Midwest U.S. After a systematic training, researchers interviewed 11 rural caregivers of persons with dementia (n = 11). Data were analyzed using thematic analysis. Although similarities with other caregivers of persons with dementia were found, important differences suggesting unique issues among these rural caregivers of persons with dementia. Many participants found strength in their community, which often served as a safety net of support. Consistent with existing literature, participants expressed financial concerns, geographic barriers and lack of dementia-specific services when using formal services. The need for more specialized formal services in rural areas to supplement existing informal care networks is discussed. Policies and services based on rural caregivers' unique concerns and challenges and that build upon their existing care networks are recommended.

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Qualitative study of bereaved carers' experiences in advanced melanoma

Melanoma is the deadliest form of skin cancer. In Australia, where this study was conducted, there were 1,281 deaths from melanoma in 2016. Treatments for melanoma have changed rapidly in recent years with the introduction of immune and targeted therapies. These have resulted in longer term survival for some, but it is not clear which patients these treatments will work for, and for how long. This study aimed to understand the impact of melanoma treatments, as they relate to diagnosis and prognosis, on the experiences of family carers. Interviews were conducted with twenty carers of patients who were treated at three melanoma centres in Australia and who subsequently died. The study found that diagnosis of advanced melanoma was a time of uncertainty as carers struggled to understand the implications of the diagnosis. Treatment options in the form of relatively new immune and targeted therapies added to uncertainty around prognosis (i.e. the likely outcome, such as chance of survival). Carers reported unclear communication of prognosis by medical specialists. Some carers reported that medical specialists did not want or were not able to give a prognosis. Many carers expected that treatments would have positive outcomes. The study findings indicate that medical specialists should recognise and address carer understanding of and need for information about prognosis as early as possible following diagnosis. Communication of the uncertain benefit of these new therapies can help patients and carers make decisions about treatment preference and care planning

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Needs assessment of informal primary caregivers of patients with borderline personality disorder: Psychometrics, characterization, and intervention proposal

Introduction. Informal Primary Caregivers (IPC) of people with borderline personality disorder (BPD) experience a significant burden, making it important to determine their specific needs. Objectives. Cross-sectional study aimed at adapting and establishing the reliability of the Questionnaire on the Needs of Family Members of People with Severe Mental Disorders to identify felt and unfelt needs that may or may not have been met in IPCs of patients with BPD and suggest intervention strategies to effectively address them. Method. The adapted version of the instrument was completed by 80 IPCs of patients with confirmed BPD diagnosis. Results. Cronbach’s alpha coefficients for different groups of needs evaluated through the instrument were: Knowledge/information = .77, Instrumental support = . 78, Participation = .63, and Personal support = .74; and for the total score = .86. The most important unmet felt needs were: 1. having information on interventions for patients and caregivers, legal and administrative aspects, and available support services; 2. having coping skills to deal with crises and manage patients’ risk behaviors; 3. receiving professional care to reduce stress; and 4. being listened by health professionals, express their personal opinions, and need for rest. Conclusions. The adapted instrument showed satisfactory internal consistency in IPCs of patients with BPD. The results highlight the urgent need for interventions for this population, focusing on psychoeducation, assertiveness training, stress management, and problem solving.

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Risk factors associated with the family care of people with serious mental illness

Background: The aim of the present study is to analyse the variables associated with the family care of people diagnosed with serious mental illness.; Material and Methods: A cross-sectional study was carried out involving caregivers of people with serious mental illness (SMI) who were known to the mental health services in Valencia (España) and associations for those with SMI. The sample comprised 417 caregivers who completed a sociodemographic questionnaire and the Zarit Burden Interview. Bivariate analyses (t-test, analysis of variance and Pearson correlation) were performed, as was a multiple linear regression model. Values of p < .05 were considered significant. The study was carried out in accordance with the recommendations of the ethics committees of the participating institutions.; Results: The statistical analyses showed significant associations between the sociodemographic and clinical variables of the caregivers and patients and the burden felt by caregivers of people with SMI. The importance of both formal and informal social support stands out as a protective factor against the consequences of the illness's impact on the main caregiver.; Conclusions: The role of spaces of mutual support is crucial. The results suggest that family psychoeducational programmes should be created, applied and evaluated in all mental healthcare services so as to reinforce training in mental health matters and provide support and assessment to caregivers in order to ease their burden.

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“This is our life now. Our new normal”: A qualitative study of the unmet needs of carers of stroke survivors

Many stroke survivors require care from informal carers such as family members and friends who may experience adverse impacts. This study aimed to qualitatively explore the unmet needs of carers of stroke survivors, and their preferences for interventions and support services. We conducted 24 semi-structured, qualitative interviews with carers of stroke survivors from the Hunter region, Australia. Inductive thematic analysis was used in the context of a needs-led framework to identify key themes of their unmet needs. Key unmet needs identified by carers of stroke survivors in this study centred on four main themes: (1) social relationships and support; (2) adequacy of information; (3) taking care of oneself; and (4) accessing appropriate services. Carers of stroke survivors desired the development of services which provide connectivity to information, training, education and community support; and inclusion in a community with social relationships and other carers of stroke survivors. Ongoing unmet needs often result in adverse health and quality of life outcomes for carers of stroke survivors. Co-designed programs and resources for carers, particularly relating to unmet needs in social, information, self-care and service access domains are needed.

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Towards sustainable family care: using goals to reframe the user-centred design of technologies to support carers

Technology has been identified as an important strategy in making caring sustainable. This article takes the design process for carer support technology as a lens on the divergent definitions that are in play when governments, technology developers and carers contemplate 'sustainability'. We argue that a central impediment to finding a productive point of overlap among the three perspectives is a predominant focus on carers' needs. We contrast this needs-based approach, and its focus on doing the tasks of care, with a goal-oriented approach focused on being in relationships. Reframing the conversation around goals is important to achieving truly sustainable caring.

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A forgotten Army: Coping as a carer

Unpaid carers are the backbone of our society who often go unrecognised for their dedication and compassion. They face a range of challenges as they attempt to juggle their work-life-care responsibilities. That’s why we decided to commission YouGov to conduct a UK-wide research project focused on identifying gaps in support and sought to understand the views of unpaid carers.

Key findings

The impacts of loneliness, poor mental and physical health, financial worries and a lack of flexibility to learn or train are placing unpaid carers under increasing strain.

  • Two thirds (64%) of carers were most likely to feel the effect of caring on their social life, causing loneliness, which most commonly manifested as a result of having less time to themselves (48%), socialising less (47%) and generally having less contact with others (41%).
  • The next most common impact was mental ill health (49%). This included increased stress (42%), anxiety (33%) and depression (27%).
  • Almost half (45%) mentioned impacts that caring had on their family life, most notably spending less time with family.
  • Two in five carers reported an impact of caring on their physical health, most often mentioning tiredness (35%), trouble in sleeping (28%) and reduced fitness (20%).
  • More than two in five (44%) unpaid carers noted the impact of caring on their financial situation. The qualitative phase of the research also revealed many hidden costs of caring, including paying for medical supplies and transport to and from appointments.
  • Three in ten unpaid carers aged 16-34 said that their education or training had been affected.

When carers were asked about their support needs, a sizable majority (74%) of carers felt that further support in some form would be useful to them, with a common desire for emotional support (33%). Carers also sought information and advice about the support available, respite care, and finances. Our report also found that there was a need for advice about maintaining good mental and emotional health, shining a light on the often unexpected levels of stress, isolation and despondency felt by unpaid carers.

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Needs and rights awareness of stroke survivors and caregivers in urban and rural China: a cross-sectional, multiple-centre questionnaire survey

Objectives: Stroke survivors require assistance and support in their daily lives. This survey aims to investigate the needs and rights awareness in Chinese stroke survivors and caregivers in rural and urban settings.; Setting: This survey was adapted from the one created by the World Stroke Organization. The questionnaire included demands for psychological support, treatment and care, social support and information. From January 2015 to January 2016, the survey was pilot tested with urban and rural-dwelling stroke survivors and caregivers from 12 hospitals. Stroke survivors were invited to participate if they were over 18 years old and had experienced a stroke. Exclusion criteria were patients who had disorders of consciousness, significant cognitive impairment, aphasia, communication difficulties or psychiatric disorders. Only caregivers who were family members of the patients were chosen. Paid caregivers were excluded.; Participants: One thousand, one hundred and sixty-seven stroke survivors and 1119 caregivers were enrolled.; Primary Outcome Measures: The needs of stroke survivors and caregivers in rural and urban areas were compared. The correlations between needs of rural and urban stroke survivors and caregivers and potential effect factors were analysed, respectively.; Results: Among the cohort, 93.5% reported the need for psychological support, 88.6% for treatment and care, 84.8% for information and 62.7% for social support. The total needs and each aspect of needs of stroke survivors in urban settings were greater than of those in rural settings (p<0.01). In rural areas, total needs and each aspect of needs were positively correlated with education level (p<0.01).; Conclusions: Needs and rights awareness of stroke survivors should also be recognised in both urban and rural China. According to the different needs of patients and their caregivers, regional and individualised services were needed by stroke survivors and their caregivers.

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Needs and Experiences of Family Caregivers of Individuals With Autism Spectrum Disorders Across the Lifespan

Both service needs and needs of the caregiver may differ across the lifespan for individuals with autism spectrum disorder (ASD). As individuals with ASD age, they may need different services, which can place different burdens on the family. The present study aimed to determine the needs of both the individual with ASD and the family caregiver across the lifespan, as well as what experiences are important to families that may not be captured by quantitative measures. Data for the present study were taken from a large, online survey of family members of individuals with ASD. Participants were primarily mothers, with children ranging from early childhood to adulthood. The survey used a list of various services that could be used by individuals with ASD and the Family Needs Questionnaire to examine service needs and usage. Service needs and usage were compared by age category (childhood, adolescence, and adulthood). Most categories of service needs and usage differed by age, although the percentage of unmet service needs was quite high across all ages. Family members of adolescents or adults tended to report fewer individual needs than did family members of children. In open‐ended responses, families frequently discussed lack of services, worry about the future, and challenges with family and social relationships. Overall findings indicate a still‐high level of unmet service needs for individuals with ASD and their families. Although most basic health needs are met, more specific needs, such as therapy services and employment services, are received by comparatively few families. This has the potential to negatively impact families as the child with ASD ages, despite caregivers reporting fewer personal needs for older individuals. 

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Home Hospice Caregivers' Perceived Information Needs

Background: Although home hospice organizations provide essential care for and support to terminally ill patients, many day-to-day caregiving responsibilities fall to informal (ie, unpaid) caregivers. Studies have shown that caregivers value receiving clear information about end-of-life (EoL) care. Meeting the information needs of this group is critical in improving their experience in hospice.; Objectives: To identify the information needs of informal home hospice caregivers.; Design: One hundred five semi-structured phone interviews with informal caregivers were conducted. Study data were analyzed using a standard qualitative method (ie, content analysis).; Participants: Informal home hospice caregivers whose loved ones have been discharged (death or live discharge) from an urban, nonprofit hospice organization.; Measured: Participants' information needs were ascertained by assessing whether information regarding hospice was or was not fully explained or whether there was information they wished they knew prior to the hospice transition.; Results: Among study participants, 48.6% had unmet information needs related to (1) general information about hospice (n = 17, 16.2%), (2) what to expect at the EoL (n = 19, 18.1%), and (3) support provided by hospice (n = 30, 28.6%). Specifically, caregivers expressed the need for more information on what hospice is, caring for a dying patient, and the day-to-day care hospice provides.; Conclusion: Our study indicates that approximately half of the informal caregivers had unmet information needs. Further research is needed to identify efficacious strategies to best meet the information needs of this group. Specific topics that need emphasis include what hospice care is, what to expect at the EoL, and what level of support hospice offers.

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Feasibility and Acceptability of Distress Screening for Family Caregivers at a Cancer Surgery Center

OBJECTIVES: To determine the feasibility and acceptability of a validated electronic distress screening program for cancer caregivers. SAMPLE & SETTING: 17 informal caregivers presenting with a patient with cancer to an ambulatory cancer surgery center. METHODS & VARIABLES: Caregivers completed the CancerSupportSource®--Caregiver screening and a brief semistructured interview concerning the screening. RESULTS: Caregivers described the screening as straightforward and comprehensive. They endorsed concerns about their self-care needs but were most likely to request information or a referral for patient-focused concerns. Referrals generated from the program are likely viably addressed with existing supportive care resources. IMPLICATIONS FOR NURSING: Brief, caregiverfocused distress screening is perceived positively by caregivers. Caregivers indicated that they felt it validated the importance of their role and highlighted the hospital's efforts to continually improve care. This screening program may be particularly beneficial in ambulatory surgical centers to efficiently identify caregivers with concerns and provide a point of entry to remediate these concerns. 

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Using photo-elicitation to explore the lived experience of informal caregivers of individuals living with dementia

Objectives: This study aims to explore the subjective lived experience of informal caregivers supporting an individual with dementia.; Design: This study uses the interpretive phenomenological approach utilizing the method of photo-elicitation and in-depth semi-structured interviews.; Methods: Six individuals were given a disposable camera to capture photographs which they felt illustrated their own lived experiences of being a caregiver of an individual living with dementia. Photographs were printed and used to form discussion within an in-depth semi-structured interview. The photographs provided an innovative way of capturing the lived experiences of formal dementia caregivers and allowed the interview data to be grounded in their daily living, centring around their own lived experiences.; Results: Three themes emerged from data analysis: 'conceptualising the role of informal caregiver', 'support for the informal caregiver', and 'the caregivers own needs'.; Conclusions: Findings demonstrated the complexity of the relationship between the caregiver and the person living with dementia, and the shift in this relationship specifically due to the role of carer, with notable differences between spousal caregivers and adult-child caregivers. The importance of social, emotional, and practical support for caregivers was highlighted, as well as significance of the caregiver's individual needs. Statement of contribution What is already known on this subject? Informal caregivers of individuals living with dementia cover much of the associated health care costs. Informal caregiving of individuals living with dementia can lead to negative health outcomes of the carer. Health outcomes of informal caregivers living with dementia are grounded in culture and are influenced by multiple factors. What does this study add? The complexity of the transition from family member to informal caregiver has both a physical and emotional impact on caregivers. The transition, and experiences of informal caregiving, is dependent on the relationship to the individual living with dementia. Caregiver support and recognizing the caregiver's individual needs were imperative to caregiver well-being.

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Needs and preferences of informal caregivers regarding outpatient care for the elderly: a systematic literature review

Background: Informal caregivers are an essential pillar for ensuring and maintaining the outpatient care of the frail elderly. Due to demographic changes, including an increase in the number of people in need of care as well as changing social structures (full-time employment of women, increasing number of single households, etc.) these informal care structures are fraught by considerable challenges. To support and facilitate informal caregivers in their role of nursing, it is important to identify their preferences, needs, and thus create a preference-oriented system.; Methods: A systematic review was conducted to identify preferences and needs regarding the organization of informal care. The database searches were performed by using EMBASE, Scopus and Dimdi.; Results: A total of 44 studies were included in the present review. Studies from 17 different countries provide broad international perspectives. Besides the preferences for long-term care structure, the following four principal topics were identified: (1) informational needs; (2) support needs; (3) organizational needs, and (4) needs for societal recognition.; Conclusion: To meet the current challenges in the outpatient or home-based care of elders, it is essential to strengthen the role of informal caregivers. Therefore, it is necessary to adopt and further develop informal care structures according to the needs of informal caregivers. However, demographic, financial and cultural aspects of each country need to be considered as these may influence the preferences and needs of informal caregivers.

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Exploring therapeutic interventions to reduce the experience of guilt in carers of people living with dementia

Family carers of people with dementia often describe feelings of guilt, grief and low mood, and are also at increased risk of clinical depression. Through a skilled assessment of a carer’s feelings of guilt, an Admiral Nurse identified specific psychological approaches helpful in relieving this potentially damaging and paralysing phenomenon. Person- and family-centred approaches throughout the assessment process, and addressing the needs of individual family members in expressing their individual emotions and experience to the changes in needs of the person with dementia as they become more complex, are essential to family wellbeing. Identifying and differentiating between guilt, anticipatory grief and depression are essential when planning interventions to support family carers.

[The same article is also published in British Journal of Neuroscience Nursing Vol 14, no. 6  https://doi.org/10.12968/bjnn.2018.14.6.286 ]

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Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care-An Overview of Current Literature

Palliative and hospice care aims to improve quality of life of patients' relatives, but still little is known about their specific problems and needs. We present a comprehensive literature update. Narrative review to present an expert overview of peer-reviewed, English-written original research publications and reviews on psychosocial and existential problems, supportive needs as well as interventions for relatives during the patients' disease trajectory published between January 2017 and November 2018. A total of 64 publications were included. Relatives report high rates of psychological and existential distress, burden and psychological morbidity during the total disease trajectory of the patient. In addition, relatives report an alarmingly high number of unmet needs with information being the central issue. Relatives' problems and needs are part of complex systems influenced by various socio-demographic factors and patient⁻relatives-interactions and dependency between different psychological phenomena. First support interventions for relatives during disease trajectory have proven feasible and secondary data from randomized studies suggest beneficial effects of providing early palliative care also for relatives. Relatives should be addressed to a still larger extent in the daily practice of palliative and hospice care, thus further research to reveal more detailed systematic information is needed to improve relatives' psychological burden and quality of life.

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Identifying and Addressing Family Caregiver Anxiety

Family caregivers are an increasingly diverse group of individuals who provide significant amounts of direct and indirect care for loved ones with long-term chronic illnesses. Caregiver needs are vast, particularly as these relate to the caregiver"s quality of life. However, caregivers are often unlikely to address their personal and health-related concerns. Unmet needs combined with the caregiving role often lead to high levels of caregiver anxiety. Unaddressed, this anxiety is likely to result in poor health and low quality of life. Nurses, along with the health care team, are well positioned to assess, monitor, intervene, and reassess anxiety levels in caregivers using standardized screening tools across care settings. This article focuses on the family caregiver anxiety symptom in community-based settings, where health care providers have unique opportunities to detect this symptom in a familiar environment and begin immediate intervention leading to promotion of quality of life for the caregiver and subsequently the care recipient. Additional research efforts should be focused on health care provider goals of care, dyadic assessments, and monitoring of caregiver needs while caring for their loved ones aging in place.

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Perceived Needs of The Family Caregivers of People with Dementia in a Mediterranean Setting: A Qualitative Study

The purpose of this study was to identify, classify and analyze the perceived needs of caregivers of elderly people with dementia during the care process. A descriptive phenomenological qualitative study using seven focus groups was conducted in different primary health care centers in the province of Jaén (Spain) between July 2012 and February 2013. Eighty-two family caregivers who were caring for people with dementia in different stages of the disease were selected by purposeful maximum variation sampling. Data were analyzed and organized thematically, considering the semantic and pragmatic content and field notes. Two main categories of the perceived needs of caregivers were identified. The first was related to the management of caring for a relative with dementia, and the second was related to the management of the caregivers' own care. Our findings support the provision of comprehensive interventions for the improvement of caregivers' emotional health that encompass more than one care need. This is where psycho-educational interventions aimed at managing the various aspects of dementia and self-care in caregivers can be accommodated. In addition, proactive interventions to develop important skills to care for a relative with dementia, which are not perceived as needs by the caregivers, are needed. These include skills in family negotiation, planning and searching for resources outside the family.

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Informational needs of family caregivers of people with intellectual disability who require palliative care: a two-phase integrative review of the literature

Background: People with intellectual disabilities are living longer, with increasingly complex needs and their family caregivers may have a broad scope of unmet needs. Aims: To identify the most common needs of family caregivers, to identify gaps in the literature, and distinguish the information needs of family caregivers of people with intellectual disabilities who require palliative care. Methods: This two phase literature review used five electronic databases (CINAHL, PsycINFO, Medline, Cochrane and Pubmed). Phase 1 involved a review of systematic reviews of the needs of family caregivers across healthcare settings. Phase 2 explored the commonly reported information needs from phase 1, in relation to family caregivers of people with intellectual disability who require palliative care. There was no research explicit to the information needs of these family caregivers. Findings: This review reveals potential information needs which may exist, guided by the palliative caregiving literature; alluding to information needs surrounding the disease, finances, and psychological or practical support. Conclusion: It is surmised that a greater scope of informational need exists for this population and further research is pertinent for international healthcare settings. 

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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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Transitioning into the caregiver role following a diagnosis of Alzheimer's disease or related dementia: A scoping review

Objectives: To identify experiences, needs, interventions and outcomes for caregivers of persons with Alzheimer's disease or related dementia as they transition into this new role following diagnosis.; Design: Scoping review of published literature.; Data Sources: A search for published articles was conducted in PsycINFO, Scopus, Ovid and Web of Science databases.; Review Methods: The Arksey and O'Malley methodological framework guided the review. Studies were screened independently for inclusion by two persons. A total of 955 studies, after duplicates removed, were found by the database search. From these, 127 full-text articles were retained through the screening of titles and abstracts by two reviewers. The two reviewers assessed 46 full-text articles for eligibility. The final 29 studies identified caregiver experiences, needs, and interventions during the period following a diagnosis of Alzheimer's disease or related dementia in the scoping review.; Results: Twenty-nine studies were organized around three major categories: i) family caregiver experiences on receiving the diagnosis (n = 23), ii) needs during this time of transition (n = 18), and iii) interventions and outcomes to support their transition into the caregiver role (n = 5). While studies may have addressed more than one topic, 16 studies intersected categories of both caregiver experience and needs, and one study intersected categories of needs and interventions. There were several studies that focused more specifically on the caregiver's initial reactions to a diagnosis of Alzheimer's disease or related dementia (n = 9), the emotional responses to the diagnosis (n = 14), changes in personal relationships and responsibilities with a new role (n = 16). Caregiver needs following the diagnosis included knowledge and information (n = 14), emotional and psychological support (n = 11), and assistance with care planning (n = 7). Five papers examined interventions specifically tailored to caregiver needs at this juncture, which support the transition into the caregiver role.; Conclusions: The time of receiving a diagnosis of Alzheimer's disease or related dementia is a critical period in the process of transitioning into caregiver role. This period marks a new phase in the process of caring by family caregivers. Thus, it is important to fully understand the experiences and needs of caregivers and effective interventions in order to better support their transition into this new role.

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Online Resources: What Family Carers Think

In 2018, a survey found that 82% of the Irish population, across all age groups, had used the internet in some way in the three months preceding the survey (Central Statistics Office, 2018). Ninety-seven percent of those aged between 16 and 29, and nearly half of those aged between 60 and 74, had done so. It is clear, then, that  increasingly the internet is becoming a tool that must be understood and utilised as a viable way to supplement supports for family carers.

In order to discover how family carers in Ireland are using – and could be using – online services and supports, Care Alliance Ireland (in consultation with the National Carers Week partner organisations) undertook a survey of Irish family carers in April 2019.

300 family carers responded online, and a summary of their responses are included here. The purpose of this report is to highlight how family carers are using the internet to connect with others, to get supports and information from not-for-profit and statutory agencies, and to manage their lives as family carers. It should be noted that this is not a representative sample of Irish family carers – the survey was administered online and disseminated via the National Carers Week Facebook page and other online channels.

Internet supports are not, of course, a substitute for significant one-to-one supports. There will always be a need for the timely and adequate provision of in-home respite, therapies and all the other supports which are necessary to create a positive environment for a family carer to provide the best possible care to a family member or friend. However, if used in conjunction with existing supports they can be a source of peer support and a way to tackle the social isolation and loneliness that many family carers experience – in particular in rural and geographically isolated locations.

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Recognising and managing the psychosocial needs of family carers: It's time for change

This editorial discusses the availability of resources to support carers and recommends a better focus on family-centred care.

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Population-Based Profile of Mental Health and Support Service Need Among Family Caregivers of Adults With Cancer

PURPOSE: We examined associations between caregiving intensity and mental health among cancer caregivers at the population level and potential moderation by an actionable intervention target, support service needs. METHODS: Behavioral Risk Factors Surveillance System survey data (2015) from caregivers of adult patients with cancer was analyzed. Caregiving intensity included hours per week caregiving (high, > 20; low, ≤ 20) and caregiving duration (long, > 2 years; short, ≤ 2 years). Mental health was reported as number of mentally unhealthy days (MUDs) in the past 30. Support service needs comprised caregiving classes, service access, support groups, counseling, and respite care. Multivariable linear regression models were performed adjusting for sociodemographics and sampling weights. RESULTS: A total of 1,831 caregivers were included in the study, representing approximately 1.1 million cancer caregivers in the 18 US states, distributed with the following intensity: 122 (8.3%) caregivers reported care at high hours/long duration, 213 (13.1%) high hours/short duration, 329 (18.4%) low hours/long duration, and 910 (60.2%) low hours/short duration. Mean MUDs was 6 (SE, 0.5). The highest reported unmet service need was help with service access (48.4%). Higher caregiving intensity and support service need were associated with more MUDs (P <.05), with a significant interaction (P =.02) between caregiving intensity and unmet support service needs. High hour/long duration caregivers reporting any unmet needs had a mean of 15 versus 8 MUDs for those with no unmet needs. CONCLUSION: High-intensity cancer caregiving was associated with poor mental health, especially for those reporting support service needs. Developing strategies to optimize support service provision for high-intensity cancer caregivers is warranted. 

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Facilitators and barriers to supporting individuals with spinal cord injury in the community: experiences of family caregivers and care recipients

Purpose: Family members make an important contribution to informal and formal care, as well as the overall health and wellbeing of individuals with spinal cord injury. Caregiving often results in negative outcomes which, if not addressed, threaten the sustainability of these critical supports. We sought to explore the perceptions of individuals with spinal cord injury and their family caregivers regarding the facilitators and barriers to undertaking and sustaining the caregiving role in the community.; Methods: A qualitative descriptive approach with semi-structured interviews. Thematic analysis was employed to determine key themes arising from individuals with spinal cord injury (n = 19) and their family members' (n = 16) experiences.; Results: The following four facilitators to caregiving were identified: access to community support services, positive coping in relationship, social support, and mastery of caregiving roles. Conversely, the following six barriers to caregiving were identified: lack of access to community resources, lack of knowledge about resources and formal training, fragmented continuity of care, negative coping in relationship, role strain, and caregiver injury or illness.; Conclusions: The current study demonstrated that positive coping, social support, skills training, access to community services and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. As such, the development of future caregiver interventions should consider these facilitators. Implications for Rehabilitation Family caregivers make an important contribution to the care processes and overall quality of life of individuals with spinal cord injury post-discharge into the community. The potential negative effects of caregiving could threaten the sustainability of these critical supports. Positive coping, social support, skills training, access to community services, and continuity of care contribute significantly to the sustainability of the spinal cord injury family caregiving role. This study shows the need for better integration of family members during the rehabilitation and discharge process to better prepare them for the caregiving role.

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Caring for the person with cancer and the role of digital technology in supporting carers

Purpose: Informal carers may experience a range of unmet needs during the caring period and, at times, lack support to adequately manage care of the person with cancer and balance personal family and work commitments. The aim of this study was to understand the needs of informal carers of people with cancer and how digital technology may be used to address carers' needs.; Methods: Focus groups and semi-structured interviews were conducted with 45 carers. Carers discussed supports and services they used to address their needs, barriers to accessing support, and how digital technology could assist in meeting their needs.; Results: Carers used informal support such as friends and family and formal support including respite and community groups during the caring period. Barriers to accessing support included reluctance to seek external help, sensitivities associated with prioritising carers' needs over patients' needs, and the adequacy of information received. Technology was reported to have the potential to allow carers' privacy to seek support; however, carers' attitudes towards technology differed.; Conclusions: Carers require support during the caring period to help balance their own needs with the needs of the person receiving cancer treatment. Digital technology may provide an opportunity to deliver support to carers; however, further research is needed to assess the appropriateness of these interventions to inform improved health outcomes for this vulnerable group.

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The experiences of family caregivers of people with advanced dementia living in nursing homes, with a specific focus on spouses: A narrative literature review

Dementia affects individuals, families and their relationships. While there is increasing evidence about the experiences of family caregivers of people with dementia, relatively little is known of their experiences when their relatives are living in nursing homes with dementia. This narrative literature review aimed to synthesise current knowledge about family caregivers' experience of having relatives living in nursing homes with advanced dementia, particularly focussing on community-dwelling spouses. Using a systematic approach, textual narrative synthesis was undertaken. Four themes were identified: changing relationships, the need for companionship, adjusting to new roles and relationships and anticipating death/looking towards the future. Two additional themes were present only for spouses: changing identity – feeling married, being married; and alone but... The review demonstrates that some aspects of spouses' experiences are different from those of other family caregivers. Longitudinal studies are required to better understand spouses' motivations to continue caring in this context and to find ways of supporting them.

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Defining Essential Elements of Caregiver Support in Gynecologic Cancers Using the Modified Delphi Method

PURPOSE: Family caregivers are instrumental to patients with gynecologic cancer and can be deeply affected by the demands of caregiving. Our aims were as follows: (1) increase awareness of unmet needs of caregivers and (2) identify and prioritize the unmet needs of caregivers and essential support services to be provided in gynecologic cancer centers. METHODS: From July 2017 to June 2018, a 16-person steering committee and 40 stakeholders, including caregivers, patients, and clinicians, participated in a modified Delphi approach to generate, review, and prioritize a set of essential elements for caregiver support. Stakeholders prioritized caregiver needs and brainstormed, discussed, and prioritized essential support services to meet those needs, using three rounds of a consensus-building protocol. Basic descriptive statistics were performed to feed means and rankings back to stakeholders before each round. RESULTS: The top three caregiver needs were as follows: (1) to obtain information about their loved one's cancer, (2) how to provide support and comfort to their loved one, and (3) how to maintain their own emotional health and well-being. Fifteen essential elements of support for caregivers of patients with gynecologic cancer were identified and ranged from elements currently attainable (eg, information on managing symptoms, skilled-care training, a point person to help navigate the system) to more aspirational elements (eg, integrative services to promote caregiver well-being). CONCLUSION: To ensure comprehensive quality care, clinicians and health care providers should strive to provide caregivers with the identified essential elements of support. Health care settings should work to incorporate caregiver needs into cancer care delivery.

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Identifying and integrating patient and caregiver perspectives in clinical practice guidelines for percutaneous renal biopsy

Aim: Percutaneous renal biopsy is often essential for providing reliable diagnostic and prognostic information for people with suspected kidney disease, however the procedure can lead to complications and concerns among patients. This study aims to identify and integrate patient priorities and perspectives into the Kidney Health Australia – Caring for Australasians with Renal Impairment clinical practice guidelines for renal biopsy, to ensure patient‐relevance. Methods: We convened a workshop, consisting of three simultaneous focus groups and a plenary session, with 10 patients who had undergone a renal biopsy and seven caregivers. Topics and outcomes prioritized by patients and their caregivers were compared to those identified by the guideline working group, which was comprised of seven nephrologists. Transcripts and flipcharts were analyzed thematically to identify the reasons for participants' choices. Results: In total, 34 topics/outcomes were identified, 14 of which were common to the list of 28 previously identified by the guideline working group. Most of the new topics identified by patients/caregivers were related to communication and education, psychosocial support, and self‐management. We identified five themes underpinning the reasons for topic and outcome selection: alleviating anxiety and unnecessary distress, minimizing discomfort and disruption, supporting family and caregivers, enabling self‐management, and protecting their kidney. A new topic on patient care and education was added to the guideline as a result. Conclusions: Patient and caregiver involvement in developing guidelines on renal biopsy ensured that their concerns and needs for education, psychosocial support, and self‐management were explicitly addressed; enabling a patient‐centred approach to renal biopsies. Summary at a Glance: This paper, with a patient‐centred care perspective, provides opportunities to improve care for patients undergoing renal biopsy. Meanwhile, it identifies the importance of education, psychosocial support, and self‐management for both patients and caregivers.

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Experiences and support needs of older carers: A focus group study of perceptions from the voluntary and statutory sectors

Objectives: Older informal carers play a vital, growing role in supporting others with long-term health conditions but their support needs and experiences are poorly understood. The aim of this study was to explore the perceptions of volunteers and professionals of the experiences and support needs of older carers (aged 70+ years). Methods: Thirty-five volunteers and professionals working with older carers in the voluntary and statutory sectors participated in a series of focus groups in outer London, United Kingdom. Groups were audio recorded, transcribed and subjected to thematic analysis Findings: Five main themes were identified. These included participants' perceptions of older carers' ambivalence about asking for support, their multiple losses, often restricted lives, social isolation and loneliness and concerns for their loved ones when they can no longer care. Overall, these themes are similar to those reported for adult carers in general but older carers' experiences were regarded as more challenging primarily because of their pride, attitudes to caring and because of their age, their own health was often declining making the physical aspects of caring and leaving their homes more difficult. Concerns about the future are thought to be particularly important for older carers of adult children with disabilities because they expect to be outlived by their children, although similar concerns were voiced by spouses of partners living with dementia. Conclusions: Professionals and volunteers need to consider these additional challenges for older carers. Support with accessing services, for example from the voluntary sector, is important as is future exploration of how to support older carers in planning for the future care for their loved ones is needed. 

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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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Needs of persons with dementia and their family caregivers in dementia cafés

Background and Aims: Several studies have shown the effectiveness and diversity of dementia cafés, whereas there are few published articles in academic research focusing on what persons with dementia and their family caregivers need and whether the services provided satisfy their needs. This study aimed to identify the needs of persons with dementia and their family caregivers participating in dementia cafés in Japan.; Methods: Interviews and participant observations were conducted in nine dementia cafés. Study participants were persons with dementia, their caregivers, and the staff in dementia cafés. Data were analysed using qualitative content analysis.; Results and Discussion: A total of 24 participants were recruited. Needs for persons with dementia were subdivided into five categories: to express their feelings about their current condition; to be accommodated through consideration of their physical and cognitive status; for changes in their health conditions to be noticed; to enjoy entertainment; and to keep in touch with others inside and outside of the dementia café. Needs for family caregivers were subdivided into four subcategories: to express their feelings such as anxiety and guilt and complaints regarding caregiving; to consult about difficulties in daily life; to listen to other family caregivers' experiences; and to keep in touch with others inside and outside of the dementia café. The needs of persons with dementia and family caregivers differ partly.; Conclusions: Dementia cafés should create programmes and comfortable environments answering to the differences of their needs.

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Informal Caregivers' Perceptions of Needs From Hospice Providers: An Integrative Review

Introduction: In the United States, informal caregivers (ICs) provide care to over 70% of patients at the end of life. Approximately 500 000 ICs contribute to the end-of-life care for patients in the United Kingdom. Hospice care is expanding worldwide to meet the needs of these ICs. Because ICs play an instrumental role in the provision of hospice services, and their perspective of their needs of formal services requires further clarity, the purpose of this review is to synthesize research that elucidates perceptions of ICs regarding their experiences with hospice providers.; Methods: Twelve research studies regarding perceptions of informal hospice caregivers were obtained by searching CINAHL, PsycINFO, and MEDLINE databases.; Results: Four primary themes emerged that describe what ICs perceive as beneficial contributions of hospice providers in aiding their caregiving: providing easy access to desired care, building up the caregiver, forming a relationship, and utilizing culturally relevant interpersonal skills.; Conclusion: Particular attention must be paid to ensuring that the IC is acknowledged as an expert part of the team. Clearly explaining available services, creating better ways to ease the IC's transition from caregiving to bereavement, and recruiting minority hospice providers are other important efforts that could improve the caregiving experience. The needs of ICs are complex, but by listening to their perspective, we can begin to clarify the best ways to aid them in their difficult job.

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Identifying Needs for Self-management Interventions for Adults With CKD and Their Caregivers: A Qualitative Study

Rationale& Objective: Fostering the ability of patients to self-manage their chronic kidney disease (CKD), with support from caregivers and providers, may slow disease progression and improve health outcomes. However, little is known about such patients' needs for self-management interventions. We aimed to identify and describe the needs of adults with CKD and informal caregivers for CKD self-management support.; Study Design: Descriptive qualitative study using semi-structured interviews and focus groups.; Setting& Participants: 6 focus groups (37 participants) and 11 telephone interviews with adults with CKD (stages 1-5, not on renal replacement therapy) and informal caregivers from across Canada.; Analytic Approach: Thematic analysis.; Results: 3 major themes were identified: (1) empowerment through knowledge (awareness and understanding of CKD, diet challenges, medication and alternative treatments, attuning to the body, financial implications, mental and physical health consequences, travel and transportation restrictions, and maintaining work and education), (2) activation through information sharing (access, meaningful and relevant, timing, and amount), and (3) tangible supports for the health journey (family, community, and professionals).; Limitations: Participants were primarily white, educated, married, and English speaking, which limits generalizability.; Conclusions: There are opportunities to enhance CKD self-management support by addressing knowledge pertinent to living well with CKD and priority areas for sharing information and providing tangible support. Future efforts may consider the development of innovative CKD self-management support interventions based on the diverse patient and caregiver needs identified in this study.

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The burden, support and needs of primary family caregivers of people experiencing schizophrenia in Beijing communities: a qualitative study

Background: Family caregivers play crucial roles in taking care of people experiencing schizophrenia in the community. The burdens on and needs of caregivers of these patients should be emphasized. This study aimed to explore the perspective of family caregivers of people experiencing schizophrenia in the communities of Beijing in terms of the burdens of care and the acquisition and further need for support in order to provide guidance to health care providers regarding how to target therapeutic interventions for families of individuals experiencing schizophrenia and to provide recommendations for policy makers to tailor countermeasures and services.; Methods: A total of 20 family caregivers of schizophrenia patients were enrolled in our study. A face-to-face and semi-structured in-depth qualitative interview study was conducted to explore the caregivers' perspective on the burden on caregivers, support and further needs. This study was conducted in the community health service centres where the family caregivers regularly visit. The study was carried out according to good ethical practices, data analysis and reporting guidelines.; Results: Most participants reported that they were suffering from heavy life burdens and had negative experiences with respect to obtaining social support, and they emphasized that they would require more support. Economic and daily housework burdens, limited social communication, and psychological stresses were the principal burdens. Support including financial, medical and information and educational support did not satisfy the needs of the caregivers and their patients. More financial support, respect, and rehabilitation institutions were reported to be needs of the caregivers.; Conclusions: Family caregivers of people experiencing schizophrenia suffer from heavy physical and psychological burdens; however, the current support provided is insufficient. More services and better public attitudes should be considered for people experiencing schizophrenia and their caregivers.

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The unmet needs of family members of patients with progressive neurological disease in the Czech Republic

Background: Caring for patients with a progressive neurological disease (PND) causes stress that may impact on the state of health as well as the quality of life of the caring family. Objective: The aim of the study was to explore the unmet needs of the family members of patients with PND in advanced stages. Methods: Grounded theory (constructivist approach) was used to conceptualize the patterns of unmet care needs. Data collection methodology involved focus groups (n = 4) and interviews, in which a total of 52 people participated (patients, family members, and professionals). Results: Based on the data analysis, three domains (family situation, role of the caregiver, and professional help) were identified, which illustrate the unmet needs. In particular, lack of information about the disease and available support available resulted in a deterioration mutual understanding between the patient, family, and the medical staff; also increased stress for the caregiver, and lowered quality of life for the caring family. Conclusion: Family members expect health workers to provide them with support, which includes informing them about the possible help available from the health and social welfare systems.

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A translational approach to design effective intervention tools for informal caregivers of dependent cancer patients

Objectives Caregivers of terminal patients often report a higher prevalence of unmet needs than cancer survivors. However, very few interventions have been carried out to support caregivers of patients in advanced stages, and, in most cases, they have not been rigorously designed and evaluated. The ultimate aim of this research was to obtain specific information about the sociodemographic characteristics, the different types of care provided, the symptoms due to burdens, the impact of caring on the quality of life, and the unmet needs of informal caregivers of dependent patients with cancer. This is to design effective intervention programs that can be implemented from the hospital setting itself and therefore, to improve their quality of life and prevent the deterioration of their health. Study design A cross-sectional design and survey methodology were used for descriptive purposes. Methods The sample was composed of 132 informal caregivers of dependent patients with cancer, from a public hospital in Valencia, Spain, who were identified through the patient database of the oncology service, over the 4-month data collection period. Self-administered questionnaires were combined with personal interviews: Interview Protocol for the main caregiver, Questionnaire ICUB97, and survey of hospital quality. Results The most frequently provided types of care included the following: keeping the patient company, acting as an intermediary between them and healthcare workers, and helping them to do basic daily life activities. The main negative consequences caregivers reported were the following: feeling more tired, having less free time, changing their daily routines, and having fewer social relationships/interactions and various emotional and physical symptoms. Many of the needs of informal caregivers were not being met: resolution of doubts about illness, training in the care they should provide to the patient, and psychological help. Conclusions Recommendations for the development of effective intervention programs are offered: increasing the psychological services provided in oncology units, training medical staff in communication skills, facilitating access to information about the disease through different means, training for informal caregivers in care techniques, coping and communication skills, self-care, and organization of time. On the one hand, implementing effective intervention programs for informal caregivers will reduce the amount withdrawing from their care duties and on the other hand, the proliferation of what are known as secondary patients. Highlights • Caregiving women were more prevalent than men, with an average age of 45 years, and a medium socioeconomic status. • The most frequently provided cares were helping patients in basic activities and mediating between them and medical staff. • The main negative consequences for caregivers were changing daily routines and various emotional and physical symptoms. • The main unmet need of caregivers was specific information and training about the care they should provide to the patient.

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Equitably improving outcomes for cancer survivors and supporting caregivers: A blueprint for care delivery, research, education, and policy

Cancer care delivery is being shaped by growing numbers of cancer survivors coupled with provider shortages, rising costs of primary treatment and follow-up care, significant survivorship health disparities, increased reliance on informal caregivers, and the transition to value-based care. These factors create a compelling need to provide coordinated, comprehensive, personalized care for cancer survivors in ways that meet survivors' and caregivers' unique needs while minimizing the impact of provider shortages and controlling costs for health care systems, survivors, and families. The authors reviewed research identifying and addressing the needs of cancer survivors and caregivers and used this synthesis to create a set of critical priorities for care delivery, research, education, and policy to equitably improve survivor outcomes and support caregivers. Efforts are needed in 3 priority areas: 1) implementing routine assessment of survivors' needs and functioning and caregivers' needs; 2) facilitating personalized, tailored, information and referrals from diagnosis onward for both survivors and caregivers, shifting services from point of care to point of need wherever possible; and 3) disseminating and supporting the implementation of new care methods and interventions.

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Needs Assessment for Turkish Family Caregivers of Older Persons with Cancer: First-Phase Results of Adapting an Early Palliative Care Model

Background: Although palliative care is expanding globally for patients with serious illness, Turkey has not had widespread integration of early concurrent oncology palliative care. Hence, adapting and testing models of concurrent oncology palliative care for Turkish patients is imperative. Furthermore, it is critical that these care models also address the needs of family caregivers.; Objective: To assess needs and elicit suggestions that would inform the adaptation of the ENABLE (Educate, Nurture, Advise, Before Life Ends) evidence-based early palliative care model for Turkish family caregivers of older persons with cancer.; Methods: Formative evaluation study. Semi-structured interviews were conducted with 25 primary family caregivers of older individuals with cancer. Thematic analyses yielded themes in four domains: meaning of caregiving, effect of caregiving, education and consulting needs, and preferences about the delivery of the ENABLE model of palliative care support.; Results: Caregivers described the impact of the cancer on their daily lives and responsibilities in the areas of physical, psychological, work, social, and family life. Caregivers emphasized their needs for information about symptoms, physical care, cancer pathology, and prognosis. Regarding the ENABLE model of early concurrent palliative care, participants wanted encounters to be in-person with educational material support that was simple and focused on disease information (prognosis, medication, handling emergency situations), psychological support, caring, nutrition, and acquiring community services.; Conclusion: Themes from this study will be used to modify the ENABLE intervention protocol for future pilot and efficacy testing in Turkish caregivers.

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Development of an mHealth application for family carers of people with dementia: A study protocol

Background: The progressive and complex nature of dementia demands carers have specific knowledge and training. However, often carers do not have adequate knowledge and skills, particularly for functional disability care. Aim: This study aims to develop and test the feasibility of an educational and supportive mHealth/smartphone application that addresses the needs of family carers of people with dementia related to functional disability of care recipients. Methods: This mixed method study consists of three phases. In phase one, an online survey and individual interviews with carers will be conducted to assess their needs related to management of functional disability and the development of an mHealth application. Additionally, experts will be consulted to identify their opinions on application development. In phase two, using information from phase one, an mHealth application will be designed and developed. In phase three, a feasibility study will be conducted with carers to identify usability, user adherence, acceptance and experiences with the application. Discussion: This study will generate new knowledge about the needs of carers related to the management of functional disability of people with dementia and the use of smartphones for health-seeking behaviours, and will develop an mHealth application for carers to address the needs related to functional disability care. Conclusion: A mixed method study was designed to develop a user-centred educational and supportive mHealth app for family carers to address needs related to the functional disability of people with dementia consisting of three phases: needs assessment, the designing of the app and a feasibility study.

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Unmet Support Needs of Informal Caregivers of Older Adults

Due to projected growth of the 65-and-older population and concerns of an impending care gap, reliance on informal caregivers is expected to increase. Improving support for informal caregivers is viewed as a national priority, yet research related to the unmet support needs of informal caregivers is limited. The purpose of this cross-sectional correlational study was to examine predictive relationships between contextual factors (caregiving relationship and type of illness) and environmental factors (rurality) and the unmet support needs (classes, service access, support groups, counseling, and respite) of informal caregivers of older adults. The theoretical framework was Bronfenbrenner’s ecological systems theory. Archival data were drawn from the 2015 Behavioral Risk Factor Surveillance System optional caregiver module dataset provided by the Centers for Disease Control and Prevention. Findings from multiple logistic regression analysis revealed that spousal caregivers had 42.7% lower odds than adult child caregivers of reporting unmet support needs related to service access. Dementia caregivers had 2.05 times higher odds of reporting unmet support needs of counseling, 1.31 times higher odds of reporting unmet support needs related to service access, and 1.91 times higher odds of reporting unmet support needs for respite care, relative to other caregivers. Caregivers residing in a suburban county had 28.7% lower odds and caregivers not residing in a metropolitan statistical area (MSA) had 30.5% lower odds of reporting unmet support needs related to service access, relative to caregivers residing in the center city of an MSA. Health care leaders and policymakers may use the findings to distribute resources and tailor interventions to better meet the needs of informal caregivers of older adults.

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Identifying support needs to improve rural dementia services for people with dementia and their carers: A consultation study in Victoria, Australia

Objective: The support and service needs of people with dementia and their carers are not always addressed in rural regions, yet family carers play an important role in supporting the person living with dementia to remain living in their own home. This study sought to identify and prioritise service and support needs of people with dementia and carers. Design: A two-phase mixed methods study involving qualitative focus groups and a survey. Setting: A rural region in Victoria, Australia. Participants: People living with dementia, carers and health professionals. Results: Focus groups identified 12 areas of need. A follow-up survey reached consensus on the priority areas for service improvement. These included diagnosis and information access, dementia training, community understanding and carer support. Conclusion: Living in a rural region imposes significant challenges on people with dementia and carers. We need to find ways to address gaps in service provision for carers and people with dementia in rural settings and examine their applicability in other rural regions more broadly.

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The needs of informal caregivers and barriers of primary care workers toward dementia management in primary care: a qualitative study in Beijing

Background: Informal caregivers of people with dementia in Beijing are increasingly called upon to provide home-based care for their patients due to the increasing number of dementia patients and the shortage of standardized institutional solutions of care for patients in China. This study aimed to clarify the needs of informal caregivers and barriers of primary care workers toward dementia management in primary care in Beijing to provide references that may help to improve the care and services provided to individuals with dementia and their family caregivers residing in urban China. Methods: A mixed-methods approach was used in this study. We performed individual in-depth interviews with 10 informal caregivers. Moreover, we carried out focus group interviews with 29 primary care workers. Content analysis was used to separately identify themes and codes. Discrepancies were discussed until final agreement was achieved. Results: Three themes representing the core attitudes of informal caregivers and primary care workers were identified: care knowledge and skills, psychological counseling, and collaborative management. Most primary care workers believed that the management of dementia patients in primary care was necessary. However, due to the heavy work load and different medical specialties involved, these workers were unable to manage it. Conclusions: Professional training focused on dementia for primary care workers should be strengthened. At the same time, the establishment of a community-based dementia team management model that includes specialists, community health service centers (CHSCs), and community committees should be explored. 

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

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

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Why the caregivers of bipolar patients need to be in constant touch with a physician: A qualitative study of text messages from patient caregivers to a physician

Background: The variety of caregiver's needs of bipolar patients signifies the importance of performing dedicated interventions to help this group of caregivers based on the cultural conditions of the country in which they live; the present study therefore seeks to address this issue through a different method. Methods: The families of 28 patients with bipolar disorder type 1 who were treated for at least two months by a single psychiatrist gradually entered the study over a six-month period. They received the phone number of the psychiatrist in attendance as soon as the patient was in remission according to the same psychiatrist's interview. A total of 1908 texts were sent and received and each family sent an average of 68.14 text messages during the three years, with the minimum being 40 and the maximum 83. All the text messages were transcribed verbatim and were evaluated by three faculty members through the qualitative content analysis method. Results: In this study we found three themes and there were some codes in each theme. 1. The first theme was "Training" which the caregivers requested advice about symptoms and tests, the course of the disease, assurance, medication side-effects and their management, how to stop smoking, how to control high-risk behaviors and double checking appointments with the physician, making for a total of 1079 text messages received. 2. The second theme was "Reporting" which contained a description of emergency symptoms and requesting advice, reporting response or no response to the medications, reporting medication adherence and dosage taken. 3. The third theme: "The expression of feelings" including the expression of gratitude, saying congratulations on national and other celebrations and expressing anger and hatred. Conclusion: Overall, the caregivers of patients with bipolar disorder have many needs; meeting these needs affects the patients' outcome and the caregivers, but requires a greater attention by the healthcare team and it is necessary for these needs to be evaluated in the context of each distinct country.

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Spiritual needs experienced by the patient's family caregiver under Oncology palliative care

Objective: To understand the spiritual needs of the patients' family caregiver under Oncology palliative care. Method: A descriptive, qualitative study with 20 family caregivers of patients hospitalized in an Oncology palliative unit. The data were collected through a phenomenological interview, and analyzed by the method of Amadeo Giorgi supported in the Merleau-Ponty's Phenomenology of Perception. Results: The categories were unveiled: "Spirituality as a foundation for life"; "Spiritual needs sublimated by the family caregiver"; and "Care expected by the nurse". Conclusion: Family caregivers appropriate spirituality as a coping strategy and meeting the purpose and meaning of the moment experienced. It is profitable for the nurse to contemplate the spiritual needs of the caregiver in order to provide a guided assistance in the humanization of care and comprehensive care. Therefore, there is a need for new studies that address this dimension to the family caregiver in the field of Oncology, since this care is incipient by the nurse.

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Supporting Family Caregivers of Seniors Within Acute and Continuing Care Systems

Family caregivers who provide care to seniors at no cost to the healthcare system are an integral part of the healthcare system. Caregiving, however, can cause significant emotional, physical and financial burden. We held a one-day symposium on how to best involve and support family caregivers in the healthcare system. The symposium brought together caregivers, healthcare providers, administrators and policy-makers to identify needs and make recommendations to address these issues. Methods Participants engaged in conversation circles which were audio-recorded and transcribed. Data were qualitatively analyzed alongside written notes provided by participants. Results Symposium participants identified a lack of both orientation and education for healthcare providers about family caregivers and standardized processes for assessing caregiver burden. They highlighted a need to ensure that the family experience is captured and included as an essential component of care, foster a culture of collaboration, expand the notion of the healthcare team to include family caregivers, provide more integrated palliative care, and enhance policies and programs to acknowledge family caregivers. Conclusion There is a need to recognize the essential role of family caregivers in seniors' health and well-being, and to take on a more comprehensive approach to patient care.

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Experiences of bereaved family caregivers of patients with CTCL

Summary: Cutaneous T‐cell lymphomas (CTCL) are rare types of skin cancer. Skin may develop tumours or ulcers. Sometimes these may cover quite large areas and feel itchy or uncomfortable. Internal body parts may be affected in more advanced disease. Only a few people are diagnosed each year (8 per million), so most GPs do not meet people with this disease. This study from the U.K. aimed to find out about the experiences of family or close friends of people who had died because of the disease (not all people with this disease die of it). Relatives of 11 patients with CTCL who had died were interviewed, four months or more after the death. The themes from what they said are described. Family members gave vivid descriptions of how the illness changed the appearance of their relative. They spoke of how difficult it was to look after someone with very damaged skin. They described the many different things they had to do to care for their relative both in hospital and at home. Some patients had frequently been in and out of hospital. Some caregivers expected them to come home each time and so had not felt prepared when their relative died. Several caregivers described how upsetting it was to see how illness affected their relative before they died. The authors say that family caregivers should be seen as part of the care team looking after the patient. They recommend that carers' needs for practical and emotional support and information should be considered during each patient's illness. Support for carers should also be offered following the death of their relative. 

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Investigation into the needs of informal caregivers of stroke survivors in Antananarivo, Madagascar

Background: Stroke is the second leading cause of disability in Madagascar, half of those affected are <50. All treatment must be paid for; however, 92% live on <2€/day, so informal caregivers are very important. Method: In 2017, 15 caregivers of stroke survivors were interviewed by a medical student, in the rehabilitation department of the university hospital in Antananarivo, Madagascar. A semi-structured interview guide was devised exploring their understanding of stroke, assistance in activities of daily living (ADL) (using visual cues), and care burden (based on caregiver burden tools). Audio recordings and notes were analysed using thematic analysis. Results/Findings: Caregivers often lacked understanding on preventing stroke recurrence and the extent of possible recovery. Care burden was considerable, including impact on own well-being and finances, and caregivers felt that they had little access to specialized equipment or help. Participants were desperate for information regarding stroke care and recovery; this may have influenced how they approached the interviewer, as a potential information source, and therefore not been as critical of the health service. Discussion: These findings are similar to other literature on stroke survivors and caregivers in high- and middle-income countries; no literature was found in low-income countries. Limitations to this study include that a high-income group were interviewed and a translator was used. There are no occupational therapists in Madagascar, which limits the exploration of their potential benefit. Conclusion: This study is the first to explore the needs of caregivers of stroke survivors in Madagascar, the findings of which can help to inform future work in low-income countries on stroke carers. 

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Perceived burden among spouse, adult child, and parent caregivers

Aims: To identify what factors are associated with the caregiver burden of spouse caregivers, adult child caregivers, and parent caregivers. Background: Caregivers often feel stressed and perceive caregiving as a burden. The caregiver burden has been little studied from the perspective of the personal relationship between caregiver and care recipient. Design: Cross‐sectional study. Methods: A random sample of 4,000 caregivers in Finland was drawn in 2014 and those who remained either spouse, adult child, or parent caregivers at data collection were included in the analysis (N = 1,062). Data collection included recipients’ characteristics. Caregivers’ perceived burden was measured using the Caregivers of Older People in Europe index. General linear models were used to explain perceived caregiver burden. Results: Care recipients’ low level of cognitive function was associated with greater perceived burden. Higher quality of support was associated with lower perceived burden among female and male spouse caregivers, daughter caregivers, and mother caregivers. Low cognitive function explained 3–6% and high quality of support 2–5% of the total variation in the burden explained by the models, which ranged between 45–55%. Conclusion: Because cognitive challenges of care recipient are associated with greater perceived burden and high quality of support with lower burden among most of the caregiver groups, high‐quality tailored nursing interventions will be needed especially for the caregivers of the most frail care recipients

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Caregiver burden among Chinese family caregivers of patients with lung cancer: A cross-sectional survey

Purpose: To investigate the status of caregiver burden and to identify the factors related to caregiver burden among Chinese family caregivers of patients with lung cancer.; Methods: A cross-sectional design with convenience sampling was used in this study. Participants (N = 116) from the oncology inpatient ward at one teaching hospital in Chengdu were recruited from June 2015 to June 2016. The following measurement tools were used: a demographic questionnaire, the Social Support Rating Scale, the General Self-efficacy Scale, and the Zarit Burden Interview. Multiple linear regression analysis was used to identify factors associated with caregiver burden.; Results: The average ZBI score was 38.8 (SD = 13.4). Patient age (p < 0.01), medical and other types of insurance (p < 0.01), disclosure of the diagnosis to patients (p < 0.01), and social support of the caregiver (p < 0.05) were related to caregiver burden. Fifty-three percent of the variance in caregivers' burden was explained by these identified factors.; Conclusions: Caregiver burden was higher among Chinese caregivers of lung cancer patients compared with the results of previous studies. Patient age, medical and other types of insurance, disclosure of cancer diagnosis to the patient, and caregivers' social support are factors associated with caregiver burden. The results suggest that social support, comprehensive healthcare insurance initiatives, and culture-based communication skill training are potential areas for future intervention.

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Health information management practices in informal caregiving: An artifacts analysis and implications for IT design

Introduction: Unpaid informal caregivers of adult care recipients, including persons with dementia, experience multiple unmet information needs and information management challenges. Objectives: To understand the current personal health information management (PHIM) practices in informal caregiving for adults with and without dementia. Methods: Semi-structured interviews were performed with ten informal caregivers-half of whom were caring for persons with dementia-and four formal caregivers at an adult day service. Interviews centered on a paper-based tool distributed by the day service, the CARE Kit, permitting an artifacts analysis of the tools used by participants for PHIM. Qualitative thematic analysis was applied to interview data. Results: Caregivers' PHIM practices aimed to support daily care management and decision-making on behalf of care recipients, through: 1) information acquisition and integration across multiple sources and records; 2) information maintenance, updating, and use over time; and 3) information sharing and communication with healthcare professionals and other family caregivers. Participants reported advantages and challenges of their PHIM practices and tools, including fitting PHIM into their daily lives, managing PHIM-related cognitive workload, the functionality of PHIM tools, and the dynamic, longitudinal nature of PHIM. Conclusion: The study produced a number of implications for caregiver health information management information technology (CHIM IT), based on findings about the nature of caregivers' practices for managing information for adult care recipients. We present CHIM IT requirements related to privacy and security, customization and flexibility, ease of use, credibility and sensitivity, situation awareness, information integration, delegation and shared use, updating and maintenance, archiving and versioning, communication, agency and information access, and validation.

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296Exploring Personhood in Formal Care Provision in Ireland: Perspectives from Family Carers of People with Dementia

Background: Personhood in dementia is about treating people with dementia with dignity and respect and in a manner that supports their sense of self. It is a key element of person-centered care and a guiding principle in dementia care policy in Ireland. However, there is uncertainty around the concept of personhood and in particular how it is operationalised within formal care provision. This research examines the experiences and perceptions of family carers of people with dementia in relation to personhood and formal care provision.

Methods: This research is theoretically based on personhood as a relational concept. Using semi-structured interviews, family carers are asked about their perceptions of personhood in dementia within the context of formal care provision, supports and services. The interview questions center on important elements of personhood such as communication, flexibility, choice, respect, dignity and self-identity. Thematic analysis is used to examine the participants’ views. A total of 15 interviews were conducted with family carers, which included, spouses, children and siblings of people with dementia living both in the community and in long-term care.

Results: Preliminary results indicate that family carers and people with dementia had little to no choice in the services and supports provided to them. They were accepting of the services they received but identified elements of services which were not supporting of personhood. Some family carers were disappointed by the limited to no supports offered to them.

Conclusion: These findings are very relevant to dementia care in Ireland, both to the design of the system as a whole and also to the provision of care at an individual level. The results are significant for policy makers seeking to ensure that personhood is central in the implementation of current dementia policy and in the regulation of future formal care provision for people with dementia in Ireland.

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Self-efficacy and Stress Among Informal Caregivers of Individuals at End of Life

Researchers have established associations between the stressors of providing informal care and caregiver health risks. Despite the negative consequences, researchers have identified the existence of protective factors that have the potential to buffer or prevent stress. The purpose of this study was to determine the relationship between self-efficacy and stress in adult informal caregivers providing end-of-life care. This cross-sectional, associational study analyzed data from questionnaires completed by adult informal caregivers providing end-of-life care for an adult in North Texas. Questionnaires provided measures of self-efficacy, stress, and caregiver perceived health. Findings indicated caregiver self-efficacy globally had a significant correlation with stress, whereas caregivers' confidence in caring for themselves had a significant negative relationship with perceived stress. Specifically, study findings indicate caregivers with greater confidence in managing demands of caregiving have lower levels of stress, and caregivers with greater confidence in caring for themselves, specifically, have lower levels of perceived stress. Study findings highlight the importance of caregivers' self-care needs. Health care practitioners should recognize and intervene to support caregivers' self-care needs in order to prevent additional, needless health problems in this population.

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The development of a positive behaviour support programme for families following acquired brain injury

Background/Aims: Families require more specialised support to manage behaviours of concern following acquired brain injury within community settings. Evidence supports the involvement of family caregivers in behaviour interventions, however there are no validated behaviour support approaches for individuals with acquired brain injury emphasising family involvement. This research aims to (1) gain insight from rehabilitation professionals and family caregivers on best practice in behaviour support following acquired brain injury in community settings, and (2) obtain feedback on the proposed Family-directed Positive Behaviour Support Programme, which aims to enhance the capability of family caregivers in supporting behavioural changes in an individual following acquired brain injury. Methods: Rehabilitation professionals (n=8) and family caregivers (n=3) completed a three-round Delphi study with the aim of reaching consensus (75% agreement) regarding research objectives. Findings: All items presented regarding best practice in supporting family caregivers with behaviour support reached consensus. Results were used to refine the content and format of delivery of the Family-directed Positive Behaviour Support programme. Conclusions: Findings suggest an agreement regarding what support is needed, yet this is still not being provided. The Delphi process has made significant contribution to the Family-directed Positive Behaviour Support programme, which aims to inform a family-directed approach to behaviour support following acquired brain injury in community settings. 

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Family caregivers of people who have intellectual/developmental disabilities and asthma: Caregiver knowledge of asthma self‐management concepts—A pilot study

Accessible Summary: Asthma is a problem for many people. Some people need help with their medicines for asthma. People who help with medicines should know how medicines work and how they are used. This study found that many helpers need more education about asthma medicines. Abstract: Background: People who have an intellectual or developmental disability (IDD) and asthma are at greater risk of poor health outcomes. They often require assistance from caregivers when managing their medicines. The objective of this pilot study was to assess the level of understanding of asthma self‐management concepts of family caregivers who provide assistance to people who IDD and asthma. Results will inform future needs assessment and intervention studies. Materials and Methods: Nineteen caregivers of people who have asthma and IDD completed a mailed survey. The survey included scales to measure asthma self‐management concepts, inhaler technique knowledge, medication adherence and control of asthma. The caregivers were instructed to complete most of the scales with reference to the person with IDD. Results: Most caregivers had acceptable health literacy, but had low scores on the asthma self‐management and inhaler technique tests. The most frequently cited barriers to controlling asthma were inadequate caregiver and patient education about the illness as well as knowing and avoiding asthma triggers. The most frequently cited barriers to medication management were knowing inhaler technique, knowledge of medication and forgetting to use medication. Asthma was controlled in 63.2% of patients, while almost 75% of patients were considered nonadherent to controller therapy. Conclusions: Most caregivers had inadequate understanding of asthma self‐management as well as inhaler technique despite having high health literacy. Improving caregiver and patient knowledge and skills may lead to better asthma control.

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The effects of a multidisciplinary education course on the burden, health literacy and needs of family caregivers

Chronic diseases are mostly managed by family caregivers that often face the "caregiver burden". This study aimed to understand whether a multidisciplinary theoretical-practical training course could influence the burden, health literacy and needs of caregivers. Seventy-six familial caregivers were asked to complete the Caregiver Burden Inventory-CBI, Caregiver Needs Assessment-CNA, and Health Literacy Questionnaire-HLQ, before and after the course. A significant decrease in CBI and an increase of CNA were observed. However, a significantly higher rate of CBI decrease and a lower increase of CNA were detected in the neurological compared to the oncological group (p = 0.001). Moreover, the ability of the participants to look for and find health information significantly improved. The course contrasted caregivers' burden, increased their search for health information, and revealed their requiring of training and emotional and social support. Caregiver education plays a pivotal role in the management of chronic patients, enhancing the quality of life of both patients and caregivers. Highlights • Caregivers' ability to care for chronic patients can affect patients' outcomes. • Caregivers' needs assessment and education are often neglected in healthcare. • A training course positively influenced caregivers' burden, health literacy and needs. • Caregivers' education is fundamental for the management of chronic patients.

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What would I want? Dementia perspectives and priorities among people with dementia, family carers and service professionals

Different perspectives on dementia, held by people with dementia, carers and professionals working in helping service industries, were examined in 111 interviews across Australia in 2017 to add a recipients' view on what public health campaigning should address. Contrasts were found between the priorities of the different perspectives, plus a common feeling that dementia should become a normal part of social life. Rather than reflecting stigmatising behaviour, all groups expressed a need for knowledge on how to communicate and interact with people with dementia. In contrast to current campaigns, information on prevention and health-care systems were a low priority.

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Global conversations about care (conference review of the Global Carework Summit, 1-3 June 2017, Lowell, Massachusetts, USA)

The Global Carework Summit, organised by the Carework Network and hosted by the University of Massachusetts Lowell’s Center on Women and Work, brought together more than 150 attendees from 25 countries at the University of Massachusetts Lowell (UMass Lowell) in the USA during 1–3 June 2017. The Carework Network, formed almost 20 years ago by a small group of sociologists studying care, is an all-volunteer, international organisation of researchers, policymakers and advocates involved in various domains of care work. Although it is primarily based in the social sciences, it welcomes members from all academic disciplines and advocacy organisations with an interest in the study of care and care work. 

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Support Needs for Family Caregivers of Clients with Mental Illness in Iran: A Qualitative Study

This paper explored the support needs of family caregivers of people living with a mental illness in Iran. This descriptive study focused on the experiences of 20 family caregivers as well as the views of 29 professional support workers through individual face-to-face interviews. From these interviews three key themes emerged in regards to the care needs of family caregivers: (i) social support; (ii) emotional support; and (iii) safety and security. These themes highlighted the complex role of caring for a family member with a mental illness and the emotional, social and economic challenges that these caregivers experienced as a result. Iranian caregivers garnered support not only from other family members but also from neighbors and religious leaders but lacked the much needed respite care found in western countries. This research study highlighted the importance of ensuring that the caregivers themselves receive appropriate and adequate support to fulfill their caregiving role.

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Providing support to surrogate decision-makers for people living with dementia: Healthcare professional, organisational and community responsibilities

The prevalence of dementia will continue to increase with the ageing of the population. Many people living with dementia will reach a stage where surrogate decision-makers-mostly family carers-will need to make a range of decisions on their behalf. The aim of this study was to learn from surrogate decision-makers how they can be most effectively supported in this role. The study employed a qualitative design using semi-structured face-to-face or telephone interviews with a purposive sample of 34 surrogate decision-makers of people living with dementia. Transcripts of participant interviews were reviewed using a thematic approach to analysis. Four main themes were identified from this analysis: needing greater community awareness of dementia and its impact; intervening early in cognitive decline; relying on health professionals for ongoing support; and seeking and using support from wherever is relevant for each person. Based on this analysis and a review of the literature, we propose a wholistic set of recommendations for the support of surrogate decision-makers. Healthcare professionals need to help family carers understand the likely trajectory of dementia, including the significance of surrogate decision-making. They can support the person living with dementia and their surrogates to undertake advance care planning and they can act as empathic guides during this process. Health and community care organisations need to provide a "key worker" model wherever possible so that the person living with dementia and their surrogate decision-maker do not have to seek support from multiple staff members or organisations. Carer support programmes can routinely include information and resources about surrogate decision-making. Community and government organisations can help people prepare for the possibility of becoming surrogate decision-makers by promoting a greater public awareness and understanding of both dementia and advance care planning. 

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Understanding the informational needs of patients with IPF and their caregivers : ‘you get diagnosed, and you ask this question right away, what does this mean?’

BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable lung disease whose intrusive symptoms rob patients of their quality of life. Patients with IPF rely on their caregivers for support and assistance in amounts that vary according to patients' individual circumstances and disease severity. Knowledgeable and well-informed patients and caregivers are best suited to deal with life-altering conditions like IPF. METHODS: We conducted twohour-long focus groups with 13 patients with IPF and four caregivers of patients with IPF to better understand their informational needs and in what format such information should be delivered. RESULTS: Patients discussed the challenges IPF creates in their daily lives. They wanted information on how to live well despite having IPF, practical information on how they could remain active and travel and how they could preserve their quality of life despite living with a life-threatening disease like IPF. Caregivers wanted information on the general aspects of IPF, because it would help them understand what patients were going through. They also wanted specific information on how to give care to a patient with IPF, even when physical care may not be needed (as in earlier phases of the disease). Patients and caregivers both needed efficient information delivery from trustworthy sources, including the healthcare team involved in their care. They considered both spoken and written information valuable, and ease of access was critical. CONCLUSION: This study provides valuable insight regarding the informational needs of IPF patients and their caregivers. It is hoped that identifying or creating sources of this information, and insuring that patients and caregivers have access to it, will improve well-being for patients with IPF and their caregivers.

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Information-sharing with respite care services for older adults: a qualitative exploration of carers' experiences

Respite services play an important role in supporting older adults and their carers. When an older person is unable to fully represent themselves, provision of respite care relies on effective information-sharing between carers and respite staff. This study aimed to explore, from carers' perspectives, the scope, quality and fit of information-sharing between carers, older people and respite services. An explorative, cross-sectional qualitative study involving a purposive sample of 24 carers, recruited via carer support groups and community groups in voluntary organisations, was undertaken in North East Scotland. Data were collected from August 2013 to September 2014, with participants taking part in a focus group or individual interview. Data were analysed systematically using the Framework Approach. The multiple accounts elicited from carers identified how barriers and facilitators to information-sharing with respite services changed over time across three temporal phases: 'Reaching a point', 'Trying it out' and 'Settled in'. Proactive information-sharing about accessibility and eligibility for respite care, and assessment of carers' needs in their own right, were initially important; as carers and older people moved on to try services out, time and space to develop mutual understandings and negotiate care arrangements came to the fore; then, once shared expectations had been established, carers' chief concerns were around continuity of care and maintaining good interpersonal relationships. The three temporal phases also impacted on which modes of information-sharing were available to, and worked best for, carers as well as on carers' perceptions of how information and communication technologies should be utilised. This study highlights the need for respite staff to take proactive, flexible approaches to working with carers and to make ongoing efforts to engage with carers, and older people, throughout the months and years of them utilising respite services. Information and communication technologies have potential to enhance information-sharing but traditional approaches will remain important. 

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Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review

BACKGROUND: As the population is aging, the number of persons living with multiple chronic conditions (MCC) is expected to increase. This review seeks to answer two research questions from the perspectives of older adults with MCC, their caregivers and their health care providers (HCPs): 1) What are the health and social care needs of community-dwelling older adults with MCC and their caregivers? and 2) How do social and structural determinants of health impact these health and social care needs? METHODS: We conducted a scoping review guided by a refinement of the Arksey & O'Malley framework. Articles were included if participants were 55 years or older and have at least two chronic conditions. We searched seven electronic databases. The data were summarized using thematic analysis. RESULTS: 36 studies were included in this review: 28 studies included participants with MCC; 12 studies included HCPs; five studies included caregivers. The quality of the studies ranged from moderate to good. Five main areas of needs were identified: need for information; coordination of services and supports; preventive, maintenance and restorative strategies; training for older adults, caregivers and HCPs to help manage the older adults' complex conditions; and the need for person-centred approaches. Structural and social determinants of health such as socioeconomic status, education and access influenced the needs of older adults with MCC. CONCLUSION: The review highlights that most of the needs of older adults with MCC focus on lack of access to information and coordination of care. The main structural and social determinants that influenced older adults' needs were their level of education/health literacy and their socioeconomic status. [Abstract]

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What is important at the end of life for people with dementia? The views of people with dementia and their carers

Background: Approaching end of life is often a time of vulnerability; this is particularly so for people with dementia and their families where loss of capacity and the ability to communicate, make assessment and shared decision-making difficult. Research has consistently shown that improvements in care and services are required to support better quality and more person-centred care for people with dementia towards and at end of life. However, the views of people with dementia about what factors contribute to high-quality care at this time are a neglected area. Aim: The aim of this study was to identify the aspects of end-of-life care for people with dementia that are most important to them and their carers. Design: Q-methodology, a mixed method combining qualitative and quantitative techniques to study subjectivity, was used to identify the views of people with mild dementia, their family carers and bereaved carers on end-of-life care for people with dementia. Fifty-seven participants were included in the study. Results: Four distinct views were identified: family involvement, living in the present, pragmatic expectations and autonomy and individuality. Some areas of consensus across all views included compassionate care, decisions being made by healthcare professionals and information availability when making decisions. Conclusion: Our findings reveal several different views on what is important about end-of-life care for people with dementia; therefore, a ‘one-size-fits-all’ approach to care is unlikely to be most appropriate. Notwithstanding the differing viewpoints could provide a framework for service providers and commissioners for future care.

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What Caregivers Need From Clinical Nurse Specialists

In the US today, there are more than 32 million unpaid family caregivers providing complex care to a family member in the home. In 2012, American Association of Retired Persons (AARP) released the results of Home Alone: Family Caregivers Providing Complex Chronic Care (http://www.aarp.org/content/dam/aarp/research/public_policy_institute/health/home-alone-family-caregivers-providing-complex-chronic-care-rev-AARP-ppi-health.pdf). The study, conducted by the AARP Public Policy Institute and the United Hospital Fund, was a nationally representative population-based online survey of 1677 family caregivers to determine the medical/nursing tasks they performed. Study findings challenged the notion of family caregiving as limited to personal care, such as bathing and dressing, and assistance with household chores, shopping, and paying bills. Here, Fulton talks about caregiver's lack of knowledge in home and post-op care.

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Addressing the support needs of families during the acute hospitalization of a parent with mental illness: A narrative literature review

Hospitalisation of a parent with acute mental health problems impacts the consumer, their extended family/carers and children. Mental health nurses are at the forefront of promoting recovery for consumers in an acute inpatient setting. Recovery-oriented care can include provision of family-focused care which supports recovery of the parent-consumer and their family members and contributes to prevention of intergenerational mental illness. The aim of this narrative literature review was to explore existing knowledge regarding the experiences, care and support needs of parent-consumers, their family members/carers and children during the parent's acute mental health hospitalisation. It also aims to explore existing knowledge about the practices of mental health nurses providing care to this consumer group, to inform future healthcare practice and strengthen parent, child and family outcomes. Nineteen published studies addressed the review questions. In the context of hospitalisation, the majority of research regarding parenting with a mental illness is focused on mothers. Parents reported experiencing stigma during their hospitalisation. Separation from children was a concern for parents and their extended family, but admission provided an opportunity for the parent to receive treatment and for the family to receive support. Mental health nurses did not always identify parental status on admission. When parental status was identified, nurses reported issues regarding logistics and practicalities of using family rooms, children visiting the unit, and their own professional knowledge and organisational support regarding familyfocused care. Implications for practice are identified, highlighting how mental health nurses can develop their practice to support the recovery of parent-consumers. 

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“It’s just horrible”: a qualitative study of patients’ and carers’ experiences of bowel dysfunction in multiple sclerosis

Around 50% of people with multiple sclerosis (MS) experience neurogenic bowel dysfunction (constipation and/or faecal incontinence), reducing quality of life and increasing carer burden. No previous qualitative studies have explored the experiences of bowel problems in people with MS, or the views of their family carers. This study sought to understand ‘what it is like’ to live with bowel dysfunction and the impact this has on people with MS and carers. Using exploratory qualitative methods, 47 semi-structured interviews were conducted with participants recruited from specialist hospital clinics and community sources using purposive and chain-referral sampling. Data were analysed using a pragmatic inductive-deductive method. Participants identified multiple psychological, physical and social impacts of bowel dysfunction. Health care professional support ranged from empathy and appropriate onward referral, to lack of interest or not referring to appropriate services. Participants want bowel issues to be discussed more openly, with clinicians instigating a discussion early after MS diagnosis and repeating enquiries regularly. Bowel dysfunction impacts on the lives of people with MS and their carers; their experience with care services is often unsatisfactory. Understanding patient and carer preferences about the management of bowel dysfunction can inform clinical care and referral pathways.

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Service user and carer involvement in mental health care safety : raising concerns and improving the safety of services

BACKGROUND: Previous research into improving patient safety has emphasised the importance of responding to and learning from concerns raised by service users and carers. Expertise gained by the experiences of service users and their carers has also been seen as a potential resource to improve patient safety. We know little about the ease of raising concerns within mental health services, and the potential benefits of involving service users and carers in safety interventions. This study aimed to explore service user and carer perceptions of raising safety concerns, and service user, carer and health professional views on the potential for service user and carer involvement in safety interventions. METHODS: UK service users, carers and health professionals (n=185) were recruited via social media to a cross-sectional survey focussed on raising concerns about safety issues and views on potential service user and carer participation in safety interventions. Data were analysed using descriptive statistics, and free text responses were coded into categories. RESULTS: The sample of 185 participants included 90 health professionals, 77 service users and 18 carers. Seventy seven percent of service users and carers reported finding it very difficult or difficult to raise concerns. Their most frequently cited barriers to raising concerns were: services did not listen; concerns about repercussions; and the process of raising concerns, especially while experiencing mental ill health. There was universal support from health professionals for service user and carer involvement in safety interventions and over half the service users and carers supported involvement, primarily due to their expertise from experience. CONCLUSIONS: Mental health service users and carers experience difficulties in raising safety concerns meaning that potentially useful information is being missed. All the health professionals and the majority of service users and carers saw potential for service users and carer involvement in interventions to improve safety, to ensure their experiences are taken into consideration. The results provide guidance for future research about the most effective ways of ensuring that concerns about safety can be both raised and responded to, and how service user and carer involvement in improving safety in mental health care can be further developed. 

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Decision making for people living with dementia by their carers at the end of life: A rapid scoping review

Background: There are an increasing number of people living with dementia, as well as an expectation that care decisions are made collaboratively with those with the disease entering the end stage and their families. This has increased the burden on family carers. Aim: To explore the evidence on the decisional support needs of informal carers of people with end-stage dementia. Design: A rapid scoping review was undertaken of peer-reviewed publications between 2000 and 2016, which included all health-care settings and the person's own home. Six databases were searched (CINAHL, MEDLINE, EMBASE, BNI, PSYCHINFO, Web of Science) and all papers meeting the inclusion criteria were read. A thematic analysis was undertaken of the selected papers using a pragmatic approach based on how the papers addressed the research question. Results: Sixty papers were individually appraised, with 40 being included in the review. Of these papers, 11 were literature reviews and 29 were primary studies. The themes identified were: the influential factors in carer decision making, the scope of carer decision making, the conflicts/problems in carer decision making, the resources carers need to make decisions and the impact of carer decision making. Conclusion: To date, the emphasis in dementia care has been on living well with dementia, but realistically there is a need to plan for a 'good death' that includes the person and their carers. There is a need to support people with dementia and their carers to make an advance care plan, while the person with dementia can take part in the decision-making process. This proactive intervention is likely to reduce carer decision burden at end of life and facilitate achievement of death in the person's preferred place, which is usually the home or care home.

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Characteristics of the spouse caregiving experience: comparison between early- and late-onset dementia

Objectives: To investigate the characteristics of the caregiving experience according to age at onset of dementia to adapt support programmes. Method: Fifty-seven spouse caregivers of persons with early-onset dementia (PEOD) and 93 spouse caregivers of persons with late-onset dementia (PLOD) participated. The characteristics of the caregiving experience were assessed using questionnaires. The authors compared the two groups according to age at onset of the disease using a multivariate test, Pillai's Trace test. Results: The analysis showed that there were similarities and differences between the two groups of spouse caregivers. All spouse caregivers were confident in their caregiving role and fairly well prepared for future needs and reported mild depressive and anxious symptoms. However, they lacked informal support, had low confidence in requesting respite care and reported effects on their health. Compared to spouse caregivers of PLOD, spouse caregivers of PEOD had more severe perceptions of the cognitive disorders of persons with dementia (PWD) and had a better sense of preparedness and knowledge of services. Spouse caregivers of PLOD were more confident in their ability to control disturbing thoughts. Conclusion: The results suggest that programmes should provide information on support networks to improve preparedness for spouse caregivers of PLOD as well as emphasizing positive coping strategies for caregivers of PEOD to maintain good-quality relationships with PWD, which influences the perception of the symptoms. For both groups, family relationships should be considered.

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Struggles for recognition and redistribution: family carers and domestic workers in Spanish eldercare

Theories of social justice have identified the revaluation of caregiving work as a global challenge. Still, struggles for recognition are shaped by the specific cultural and institutional contexts in which they emerge. This article explores struggles for the recognition of caregiving work in Spanish eldercare, focusing on advocacy for family carers and for domestic workers. Drawing on interviews, findings reveal that domestic workers' needs are politicised to a greater extent than family carers' needs; empowerment and claims for workers' rights contrast with notions of self-care and mutual support. While the struggles are differentiated, the undervaluation of eldercare is a common theme.

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Understanding the needs of caregivers of persons with dementia: a scoping review

Background: The number of people living with dementia (PWD) is increasing worldwide, corresponding with an increasing number of caregivers for PWD. This study aims to identify and describe the literature surrounding the needs of caregivers of PWD and the solutions identified to meet these needs. Method: A literature search was performed in: PsycInfo, Medline, CINAHL, SCIELO and LILACS, January 2007–January 2018. Two independent reviewers evaluated 1,661 abstracts, and full-text screening was subsequently performed for 55 articles. The scoping review consisted of 31 studies, which were evaluated according to sociodemographic characteristics, methodological approach, and caregiver’s experiences, realities, and needs. To help extract and organize reported caregiver needs, we used the C.A.R.E. Tool as a guiding framework. Results: Thirty-one studies were identified. The most common needs were related to personal health (58% emotional health; 32% physical health) and receiving help from others (55%). Solutions from the articles reviewed primarily concerned information gaps (55%) and the education/learning needs of caregivers (52%). Conclusion: This review identified the needs of caregivers of PWD. Caregivers’ personal health emerged as a key area of need, while provision of information was identified as a key area of support. Future studies should explore the changes that occur in needs over the caregiving trajectory and consider comparing caregivers’ needs across different countries.

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Hidden carers? a scoping review of the needs of carers of people with HIV in the contemporary treatment era

The role of carers in supporting people with HIV is largely hidden in Western countries in the contemporary era of antiretroviral treatments. Little is known about their needs. A scoping review was undertaken to describe the research available on the needs of this group and identify gaps in existing knowledge. Findings reveal that carers of people with HIV have similar needs to other carers but are currently mostly invisible to support services. The article suggests that the discourse of independence underpinning the new HIV treatment era may be difficult for carers to 'disrupt' by naming what they do as 'care'.

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The third person in the room: the needs of care partners of older people in home care services - a systematic review from a person-centred perspective

AIMS AND OBJECTIVES: To identify and synthesise the needs of care partners of older people living at home with assistance from home care services., BACKGROUND: "Ageing in place" is a promoted concept where care partners and home care services play significant roles. Identifying the needs of care partners and finding systematic ways of meeting them can help care partners to cope with their role., DESIGN/METHODS: This study is based on the PRISMA reporting guidelines. The systematic review of qualitative and quantitative studies was guided by the Joanna Briggs Institute methodology., RESULTS: In total, 16 studies were included in the review, eleven qualitative and five quantitative. Three main categories were revealed in the analysis: the need for quality interaction, the need for a shared approach to care and the need to feel empowered., CONCLUSION: Care partners of older people have several, continuously unmet needs. A person-centred perspective can contribute new understandings of how to meet these needs. A knowledge gap has been identified regarding the needs of care partners of older people with mental health problems. There is a need to develop a tool for systematic collaboration between home care services and care partners, so that the identified needs can be met in a more thorough, systematic and person-centred way., RELEVANCE TO CLINICAL PRACTICE: The carers in home care services need competence to identify and meet the needs of care partners. The implementation of person-centred values in home care services can contribute to meet the needs of care partners to a greater extent than today. Future research on the needs of care partners of older people with mental health problems needs to be undertaken.

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Elder Abuse in the African Diaspora: A Review

Background: As with many other populations, abuse of older adults is a growing problem across the Africa Diaspora. Modernization and urbanization are eroding the traditional values of respect for older adults. Also, older adults living in environments with limited social and economic resources, and having no means of economic support create a recipe for elder abuse and neglect. Methods: This article reviews the current literature on the epidemiology, risk factors, and interventions used for elder abuse across the African Diaspora. Results: Reports of elder abuse range from 24.9% to 81.1% across the Diaspora. Risk factors include cognitive and physical impairment, social isolation, lack of resources and widowhood. Conclusion: Community-based programs using the unique social networks of older populations of African descent can provide a venue to improve caregiver training and support, reinforce traditional filial and informal caregiving practices, increase the utilization of available governmental and institutional.

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Assessment of informal caregiver's needs by self-administered instruments: A literature review

Background Clinicians, researchers and politicians are seeking to better assess caregiver's needs. Challenges exist in broadly implementing this so as to provide appropriate support. The aim of this review was to compile self-administered instruments for assessment of caregiver's needs that are deemed to be scientifically robust. Methods The Medline database was searched for publications reporting self-administered instruments assessing caregiver's needs with acceptable psychometric properties. These instruments were analyzed in terms of the development context, target population, concept, purpose, structure, content and psychometric properties. The dimensions of the needs were listed and categorized. Results A total of nine self-administered instruments were analyzed. They averaged 32 items, they were specifically developed for a targeted subpopulation of caregivers and dedicated to epidemiological research. Response devices were based on Likert scales. The main dimensions of the needs identified were 'Health and Care', 'Psychological - Emotional Support', 'Information - Knowledge', 'Social Life - Work - Finance'. None was specifically geared toward caregivers for the elderly, children or teenagers. In the absence of transcultural validation, no instrument was directly usable in Europe. Conclusions Assessing caregivers' needs is a key part in providing caregivers with appropriate support. The development of self-administered instruments constitutes a complex field that is still underexplored at the international level; strict specifications with psychometric validation are essential. To be efficient, the instrument should be integrated in a larger process including: upstream, recognition, identification and assessment of the overall situation of the caregiver; and downstream, guidance, establishment and follow-up of a suitable action plan. 

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Caregiver characteristics and bereavement needs: findings from a population study

Background: Globally, most care for people with life-limiting illnesses is provided by informal caregivers. Identifying characteristics of caregivers that may have unmet needs and negative outcomes can help provide better support to facilitate adjustment. Aim: The authors compared characteristics, expressed unmet needs and outcomes for spousal caregivers, with other caregivers at the end of life, by gender and age. Design: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey wherein respondents are asked about end-of-life care. Setting/participants: Participants were aged over 15 years, resided in households in South Australia and had someone close to them die from a terminal illness in the last 5 years. Results: Of the 1540 respondents who provided hands-on care for someone close at the end of life, 155 were widows/widowers. Bereaved spousal caregivers were more likely to be older, female, better educated, have lower incomes, less full-time work, English as second language, sought help with grief and provided more day-to-day care for longer periods. Spousal caregivers were less likely to be willing to take on caregiving again, less able to ‘move on’ with life and needed greater emotional support and information about illness and services. The only difference between widows and widowers was older age of spouse in women. Younger spousal caregivers perceived greater unmet emotional needs and were significantly less likely to be able to ‘move on’. Conclusion: Spousal caregivers are different from other caregivers, with more intense needs that are not fully met. These have implications for bereavement, health and social services.

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Spousal caregivers and persons with dementia: increasing participation in shared leisure activities among hospital-based dementia support program participants

Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses’ participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimisation with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognising and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers’ needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions.

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Unmet Needs for Family Caregivers of Elderly People With Dementia Living in Italy: What Do We Know So Far and What Should We Do Next?

Care of the elderly with dementia represents one of the major challenges for the modern society worldwide. The burden of dementia care often falls on the family members, entailing heavy psychosocial and economic consequences. The aim of this study was to evaluate the caregiver's perspective concerning the support for disease management on behalf of the physicians and the local Sicilian administrations (Italy), and the burden of care and effects on their lifestyle, to propose new prevention strategies and service for managing dementia and caregiver's burden. Fifty-nine caregivers of Italian elderly people with dementia (mean age, 73; age range: 63-83) were interviewed, and 55 of them completed an ad hoc self-report questionnaire composed of 54 multiple-choice questions. Our findings suggest that caregivers need more information on the disease's management, as well as on how to deal with the stress due to the disease burden. Moreover, a negative perception about the services offered from the local administration emerged. Assistive technology (AT) could be useful in promoting interaction between general practitioners and specialized centers for diagnosis, pharmacological and psychosocial treatments, and in saving costs. Moreover, case manager could follow patients and support family members within the care pathway, besides collecting and sharing information among the different health professionals involved. Further studies should be aimed at investigating whether AT and/or the use of specific educational strategies could be the right approach for meeting the needs of families living with dementia.

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"I just don't focus on my needs." The unmet health needs of partner and offspring caregivers of people with dementia: A qualitative study

Background Family caregivers of people with dementia have significant unmet health needs. There is a lack of research that differentiates between the needs that are specifically relevant to partner and offspring caregivers. Objective The aim of this study was to examine the health needs of partner and offspring caregivers of older people with dementia, including the barriers they experience in meeting their needs. Method Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analysed using thematic analysis. Results Five themes were identified within the data. The first theme represents caregivers' overall assessment and perception of their health needs. The remaining four themes represent the most important aspects of caregivers' health needs; mental health, emotional support and social relationships, healthy diet and exercise, and personal time. While these themes were similar for offspring and partner caregivers, the specific needs and barriers within these areas were different. A prominent barrier for partner caregivers was that they had difficulty in acknowledging their needs. Despite this, partner caregivers demonstrated unmet emotional support needs, as they no longer had emotional support from their partner with dementia. They also had an unmet need for time away from the care-giving role, yet they were reluctant to leave the person with dementia. Offspring caregivers' unmet health needs were easily identified and were focused on their unmet mental health needs and feeling socially isolated. These unmet mental health and social support needs were related to their unmet health needs in other areas such as exercise, diet and having time to themselves. Conclusion Caregivers have significant unmet needs and these are often complex, multidimensional, and they often differ between partner and offspring caregivers. Gaining a more detailed understanding of the needs and barriers that are particularly relevant to either partner or offspring caregivers will assist in the development of interventions that are tailored to the unique needs of caregivers.

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Stress, stress-related symptoms and social support among Taiwanese primary family caregivers in intensive care units

Objectives To explore the associations between stress, sleep disturbances, fatigue severity and social support among primary family caregivers in intensive care units during the early period of ICU hospitalisation.Design Cross-sectional, descriptive correlational study.Setting Intensive Care Units in a teaching hospital in Taiwan.Main outcome measures Perceived stress (Impact of Events Scale-Revised), sleep disturbances (General Sleep Disturbance Scale), fatigue severity (Lee’s Fatigue Scale), social support (Norbeck Social Support Questionnaire) and one open-ended question.Results The primary family caregivers (N = 87) were distressed and experienced poor sleep quality and fatigue during the early period of ICU hospitalisation. Primary family caregivers have various social support needs but being updated on the patients’ prognosis was at the top of the list. Perceived ICU hospitalisation stress was the only significant predictor for fatigue while age along with perceived event stress were the significant predictors for sleep disturbances.Conclusion Stress-coping interventions are needed to reduce stress-related symptoms for the primary family caregivers. Social supports did not buffer stress in this study, which calls for further research to explore the culture variance and quality of social support.

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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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What would most help improve the quality of life of older family carers of people with dementia? A qualitative study of carers’ views

Older family carers of people with dementia provide a substantial amount of care for people with dementia in the UK. Caregiving can be stressful and burdensome for these individuals, who are also experiencing psychological and physical changes resulting from their own ageing process. However, little is known about what impacts their quality of life, how this can be improved and what we should prioritise. This brief report asks one simple question to older family carers of people living with dementia – “What would most help improve your quality of life as a carer?” Qualitative data were collected from 150 carers who completed an anonymous paper survey during the development and validation of a quality of life tool for use with this population (DQoL-OC). Participants were individuals aged 60 and over and were providing care for a family member with dementia at home in the UK. Carers were recruited from a variety of voluntary organizations, community-based carers’ groups, health services and via online forums. A thematic approach was used to analyse the carers’ comments and three main overarching themes were identified. The quality of life of older family carers can be enhanced by having more time away from caregiving, accessing health and social services that are dementia friendly and by having economic support. Future care, policies and research should aim to address these key areas in order to promote better quality of life for older carers of people with dementia. Further implications for practice, policy and research are discussed.

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Need for micro-finance self-help groups among women family caregivers of persons with mental disability in rural India

Purpose Micro-finance self-help groups empower caregivers to indulge in productive activities based on the local availability of resources to reduce their financial burden. The purpose of this paper is to assess the need for and feasibility of initiating micro-finance groups for the caregivers of persons with mental disability in a rural socio-economically backward community of Karnataka, India. Design/methodology/approach The design of the study was a cross-sectional survey, with mixed methodology design out of the eight localities where the Mental Health Public Health Centres (PHC) were running successfully in Konandur area, Thirthahalli Taluk, Karnataka, one PHC was selected using simple Random Sampling Design and a 5 kms radius from Konandur town was selected as the area of the survey (190 households). During door-to-door survey, if the family indicated that a particular member is mentally unwell, the GHQ-5 and Symptoms and Others checklist were administered on him/her and the women caregiver was interviewed using qualitative needs assessment schedule and Perceived Social Support Scale. Findings Ten persons/households with mental illness (5.26 per cent) were identified in the community. Themes of financial needs, capacity of the caregiver, community resources, need for the microfinance self-help groups, informational needs, social support, burn out, and stigma elicited in the interview were depicted in the form of a conceptual framework to understand the inter-connectedness between the various themes. Research limitations/implications This study is the first initiative in the field of micro-finance self-help groups for the persons with mental illness and families. The design of the study was a cross-sectional survey, which is found globally to be the most suited in conducting prevalence studies, as it provides accurate results for future studies as well as it is the first step to obtain accurate baseline values to later plan a prospective follow up study. The study used mixed methodology design. Though the sample size was small, the information collected from the participants in qualitative and quantitative method was triangulated and conceptual frameworks were developed. As this study is one of the first of its kind in the country, the results of this study from the stated sample can be considered as an important pilot for future longitudinal and cross-sectional studies to be planned in the community. Originality/value There is hardly any scientific literature which talks about the need for Micro-finance self-help groups for Persons with Disability, especially with person with mental disability. In order to initiate any Micro-finance SHG activities, it is essential to first undertake the need for and feasibility of initiating such micro-finance group activities in any given area. This study will be an important milestone in initiating any self-help group activity for caregivers of persons with mental disability, as it would help us understand the financial needs of the community, based on which a draft proposal to initiate micro-finance self-help group activities can be drawn up.

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Families in the intensive care unit : a guide to understanding, engaging, and supporting at the bedside

This text is one of the first comprehensive resources on understanding and working with families in the intensive care unit. The text provides a conceptual overview of the Family ICU Syndrome, a constellation of physical morbidity, psychopathology, cognitive deficits, and conflict. Outlining its mechanisms, the book presents a guide to combating the syndrome with an interdisciplinary team. The text represents the full array of the interdisciplinary team by also spotlighting administrative considerations for health care management and approaches to training different members of the health care team. Family voices are featured prominently in the text as well. The book also addresses the complete trajectory of needs of care, including survivorship and end-of-life care. Written by experts in the field, Families in the Intensive Care Unit: A Guide to Understanding, Engaging and Supporting at the Bedside is a state-of-the-art reference for all clinicians who work with families in the ICU.

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Do services meet the needs of people with dementia and carers living in the community? A scoping review of the international literature

Background: Providing effective support to the increasing number of people with dementia to remain at home is a challenge for families, health professionals, service providers, and governments worldwide. The aim of this paper was to summarize and disseminate the current international research evidence on the met and unmet needs of people with dementia and their carers, to inform researchers and policy-makers. Method: A scoping review methodology was used to guide a search of studies published between 2004 and 2015 using specified search terms; 27 studies relevant to the aim were included. A constant comparison approach was used to thematically analyze the data. Results: Holistic needs encompassing basic human survival, medical, financial, and social needs were experienced by people with dementia and carers, regardless of country or methodology used to collect data. A gap was identified frequently between what was needed and the supports that were received; this gap encompassed quantity, quality, and flexibility of services underpinned by service delivery models. Conclusion: The needs of people with dementia and their carers were diverse and not always effectively met by the services designed to support them. Recommendations are offered to service providers, policy-makers, and researchers to support more effective service provision tailored to meet the needs of people with dementia and their carers while they are living in the community.

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The start of caring for an elderly dependent family member: a qualitative metasynthesis

Background: The family often takes care of an elderly person who suddenly becomes dependent. This greatly affects different aspects of the caregivers’ lives. The aim of this study is to explore the initial experiences, during the first year of care, of persons who suddenly become caregivers for elderly dependent relatives. Methods: A search in CINAHL, PsycINFO, WOS, Medline, and Scopus and a metasynthesis of qualitative research were conducted including 19 articles. Results: Three categories were developed to explain the process of becoming a caregiver ‘taking on the role’ (life changes, uncertainty and confusion, and acceptance or resistance); ‘beginning to realise’ (new needs, impact, and appraisal); and ‘implementing strategies’ (seeking help and self-learning, reordering family and social relationships, solving problems, and devising strategies to decrease negative emotions and stress). Conclusions: The synthesis provides a comprehensive understanding of the experience of becoming a caregiver in order to help health-care professionals to adapt care plans to this situation.

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Carers’ experiences accessing information on supports and services: Learning the social care “dance”

Cities across England will see a growing number of informal carers as the population ages, many of whom do not begin this role equipped with the knowledge they need to access social care services and supports. One of the more significant changes brought by passage of the Care Act of 2014 is local governments’ increased responsibility to improve the provision of information and advice on social care to informal carers, long recognized as a policy priority. To better understand where improvements can be made on a local level in order to achieve the goals laid out in the Care Act, this study considers carers’ experiences accessing information and advice on social care services and supports in a city with a population of over 250,000 in the south of England. This was done through the collection of semi-structure qualitative interviews with 11 carers to people aged 65 and older from April 2015 to July 2015. Thematic analysis of interviews revealed a tension between carers’ varying levels of knowledge and experience with the social care system and information services’ one-size-fits-all approach to providing information. Findings suggest local governments should focus on creating information services that more actively reach out to carers, provide greater guidance to those carers who need it, and work to flexibly meet informal carers information needs, acknowledging that some carers will be less familiar than others with aspects of the social care system.

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Good communication with family of people with dementia at end of life: reflections of an Admiral Nurse

As the incidence of dementia is increasing, so health and social care professionals are facing a challenge to deliver good quality end-of-life care. Historically, it is not an area that has been afforded much attention until recently, but interventions such as Admiral Nursing are well placed and equipped to work with and support families at this time. It is essential, in supporting a family to live as well as they can following a diagnosis of dementia, to facilitate dying well with or from dementia. This article uses a case study approach, combined with professional reflective practice, to explore the importance of good communication in the last few months, weeks and days of life in a family affected by dementia.

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Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice

Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL). Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses. Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both. Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support   QOL. The perspectives of people with dementia are informative when identifying needs.

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Development of Measure Yourself Concerns and Wellbeing for informal caregivers of people with cancer—a multicentred study

Purpose Measure Yourself Concerns and Wellbeing (MYCaW) is a validated person-centred measure of the concerns and wellbeing of people affected by cancer. Research suggests that the concerns of informal caregivers (ICs) are as complex and severely rated as people with cancer, yet MYCaW has only been used to represent cancer patients’ concerns and wellbeing. This paper reports on the development of a new qualitative coding framework for MYCaW to capture the concerns of ICs, to better understand the needs of this group. Methods This multicentred study involved collection of data from ICs receiving support from two UK cancer support charities (Penny Brohn UK and Cavendish Cancer Care). Qualitative codes were developed through a detailed thematic analysis of ICs’ stated concerns. Results Thematic analysis of IC questionnaire data identified key themes which were translated into a coding framework with two overarching sections (1) ‘informal caregiver concerns for self’ and (2) ‘informal caregiver concerns for the person with cancer’. Supercategories with specific accompanying codes were developed for each section. Two further rounds of framework testing across different cohorts allowed for iterative development and refinement of the framework content. Conclusions This is the first person-centred tool specifically designed for capturing IC’s concerns through their own words. This coding framework will allow for IC data to be analysed using a rigorous and reproducible method, and therefore reported in a standardised way. This may also be of interest to those exploring the needs of ICs of people in other situations.

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Meeting the needs of carers of people at the end of life

Carers have a vital role in end of life care in all settings. They are essential in enabling people to live at home at the end of their lives. Carers give and receive care, and have a range of support needs related to this complex role. This article explores the context of caring at the end of life and considers the experience of carers, in particular those who have a non-professional and unpaid relationship with someone who is at the end of life, and the support they require.

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Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis

Objectives Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course. Design In an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data. Setting and participants Home interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS/MND Clinic at Beaumont Hospital, Dublin, Ireland. Results The majority of caregivers were family members. Hours of care provided and caregiver burden increased across the interview series. Thematic analysis identified what would help them in their role, and needs related to external support and services, psychological-emotional factors, patient-related behaviours, a cure and ‘nothing’. Themes were interconnected and their prevalence varied across the interview time points. Conclusion This study has shown the consistency and adaptation in what caregivers identified as helpful in their role, across 12–18 months of a caregiving journey. Support needs are clearly defined, and change with time and the course of caregiving. Caregivers need support from family, friends and healthcare professionals in managing their tasks and the emotional demands of caregiving. Identifying the specific needs of informal caregivers should enable health professionals to provide tailored supportive interventions.

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The unmet needs of informal carers of stroke survivors: a protocol for a systematic review of quantitative and qualitative studies

Introduction Stroke events deeply affect not only the stroke survivor but also often the quality of life and physical and psychological health of the family and friends who care for them. There is a need for further information about the unmet needs of these informal carers in order to develop support services and interventions. The primary objective of this review is to report and synthesise the research describing the unmet needs of carers of stroke survivors. Methods and analysis A systematic review of quantitative and qualitative studies that report on the unmet needs of carers will be conducted. The following databases will be searched for relevant articles: MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, EMBASE, Allied and Complementary Medicine Database and Scopus. No publication date constraints will be applied. Studies will be limited to those published in English and conducted among humans. Eligible studies will report on the unmet needs of informal carers of stroke survivors, defined as family members, friends and other unpaid caregivers. Studies which focus on formal, clinical or medical caregivers will be excluded. A narrative synthesis and pooled analysis of the main outcomes will be reported. Ethics and dissemination This review will be submitted to a peer-reviewed journal. Our findings are expected to provide new insights into the unmet needs of stroke survivors’ carers. Knowledge about the unmet needs of carers will inform the development and refinement of interventions and services to address these needs and better support carers of stroke survivors. The findings of this systematic review will be disseminated publicly and in peer-reviewed journals and may be the topic of research presentations. Trial registration number CRD42017067391.

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Empowering education of arthroplasty patients' significant others in three Southern European countries

Aims and objectives To examine the relationship between significant others' expected and received knowledge and their background characteristics in three Mediterranean countries (Cyprus, Greece, Spain), all of which deal with economic restrictions, have similar social support systems with the family members acting as family caregivers, and cultural similarities. Background Significant others' role is a key element in the older patients' postoperative recovery. However, people who take care of persons older than 65 years, as persons undergoing arthroplasty, are usually old themselves and need special support. Design Multicentre, descriptive, correlational study. Methods Data were collected preoperatively from 189 and postoperatively from 185 significant others using the Knowledge Expectations and the Received Knowledge of Significant Others Scales during 2010‐2012. Results Approximately one‐fourth of the significant others were older than 65 years. Their knowledge expectations were not adequately addressed in any of the countries they expected to be educated more on biophysiological issues and received the lowest knowledge regarding financial issues. The highest difference between expected and received knowledge was found in Greece and the lowest in Cyprus. Significant others may be less prepared for dealing with situations at home due to the knowledge difference between expected and received knowledge. Conclusions Significant others receive less education comparing to what they expect therefore, they are not prepared for dealing with problematic situations during their old relative's recovery. This is especially important in Mediterranean countries, where family members often provide patient care. Implications for practice As health care is changing towards active participation of patients and family, it is important that nurses provide the education needed, as lower education may lead to poor patient outcomes and higher education may lead to significant others' anxiety. Nurses may keep in mind that older significant others do not report higher knowledge difference, but may have lower expectations.

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People with dementia and carer preferences for home support services in early-stage dementia

Objectives: To examine people with dementia and carer preferences for home support attributes in early-stage dementia, building on the paucity of evidence in this area. Method: Preferences from 44 people with dementia and 103 carers, recruited through memory clinics and an online questionnaire, were assessed with a Discrete Choice Experiment survey, with attributes informed by an evidence synthesis and lay consultation. A conditional logit model was used to estimate preference weights for the attributes within a home support ‘package’. Results: The most preferred attributes were support with personal feelings and concerns, provided by a trained counsellor at home (coefficient 0.67, p = <0.001) and information on coping with dementia, provided by an experienced worker at home (coefficient 0.59, p = <0.001). However, for people with dementia, opportunities for social and recreational activities were considered the most important (coefficient 0.48, p = <0.001). Conclusions: These preferences concur with emerging evidence on psychosocial interventions in dementia. Support with personal feelings, information and social engagement are important components. Additionally, knowledge of preferences of people with dementia and their carers can identify other attributes that may be important to effectiveness in ‘living well’ but for which there remains limited evidence.

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'Between a rock and a hard place': family members' experiences of supporting a relative with bipolar disorder

Purpose: Clinical guidelines emphasise the central role of family members in supporting people with bipolar disorder. However, there has been little focus on the challenges family members face in supporting their relative. This qualitative study explored the challenges of providing support to a relative with bipolar disorder, and how family members attempted to meet these challenges. Factors that helped or hindered their efforts were also explored, including experiences of professional support. Methods: Semi-structured interviews were conducted with 18 family members (partners, parents, adult children, and siblings). Transcripts were analysed using the Framework approach. Results: Participants faced numerous challenges pertaining to the nature of the disorder and specific illness phases, their relative’s responses to their attempts to help, and the limitations of support from healthcare professionals. Although participants were resourceful in managing these challenges, they strongly valued professional input. Six themes were identified: ‘Not knowing: like being in a minefield’, ‘It’s out of my control: sitting waiting for the next thing to happen’, ‘Treading on eggshells’, ‘Picking up on signs’, ‘Times of crisis: between a rock and a hard place’, and ‘I have to make my voice heard’. Conclusions: Family members supporting a relative with bipolar disorder face significant challenges but show considerable resourcefulness in managing them. The findings underline the importance of input from healthcare professionals to help family members effectively support their relative and manage the challenges they face. Professional support should be strengths-based, and tailored to family members’ needs.

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"Never at ease" - family carers within integrated palliative care: a multinational, mixed method study

Background: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. Methods: Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project “Patient-centred palliative care pathways in advanced cancer and chronic disease” (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. Results: On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers’ burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. Conclusions: Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the ‘unit of care’ and partner in caregiving, to improve their knowledge about, and access to, and the support available.

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The Needs of Family Caregivers of People Living with Mental Illness: A Social Workers Assessment

The aim of this study was to explore the needs of Family Caregivers of people living with mental illness in Kumasi, Ghana. An exploratory research design using a Qualitative approach was employed for the study and one on one interview was used to collect data. A total of 13 participants who were identified as Family Caregivers of mentally ill persons having their rehabilitation in Kumasi were used for the study. Thematic content analysis was used to analyse and interpret the qualitative data. The results indicated that Family Caregivers were in need of medical attention as well as helping hand to assist them in their many physical engagement and adequate sleep and time off to replenish their lost energies to prevent stress. They were also in need of shelter to accommodate their mentally ill relatives as well as social affection. Others were in need of information to gain insight into patient's treatment and condition as well as financial support. Family Caregivers needed support from friends and society in order to psyche them for their task. It is, therefore, necessary that the needs of Family Caregivers are addressed so that they can function accordingly.

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Promoting improved family caregiver health literacy: evaluation of caregiver communication resources

Objectives Family caregivers of cancer patients have a vital role in facilitating and sharing information about cancer, revealing a need to develop caregiver health literacy skills to support caregiver communication. The goal of this study was to investigate caregiver print materials and develop and assess a new caregiver communication resource titled A Communication Guide for CaregiversTM. Methods Using a model of six domains of caregiver health literacy skills, print cancer education materials were collected and evaluated for caregiver communication support. A new caregiver communication resource was also developed and assessed by caregivers and healthcare providers. Caregivers reviewed content and assessed utility, relatability, and reading quality. Healthcare providers also assessed whether the material would be understandable and usable for cancer caregivers. Results Only three of the 28 print materials evaluated were written at the recommended sixth grade reading level and only five addressed all six caregiver health literacy skills. Readability scores for A Communication Guide for CaregiversTM were at the sixth grade level, and caregivers reported its contents were relatable, useful, and easy to read. Healthcare providers also rated the material as easy for patient/family members of diverse backgrounds and varying levels of literacy to understand and use. Conclusions Existing print-based caregiver education materials do not address caregivers' health literacy skill needs and are aimed at a highly literate caregiving population. A Communication Guide for CaregiversTM meets health literacy standards and family caregiver and provider communication needs. The findings are relevant for healthcare professionals who provide cancer education. 

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Parents Caring For Adult Children With Serious Mental Illness

BACKGROUND: Parents often become the caregivers for their adult children with serious mental illness (SMI) due to the chronic and debilitating course of the illness and shortages in funding for community mental health services and residential placements. OBJECTIVE: To examine parents' management styles when caring for adult children with SMI and parents' perspectives on what type of community-based mental health interventions would support and/or enhance overall family functioning. DESIGN: A qualitative descriptive study using semistructured interviews with parents caring for adult children with SMI. The study was undergirded by Knafl and Deatrick's Family Management Style Framework. RESULTS: Four major themes emerged from the data describing prolonged and difficult phases that parents and the family undergo in caring for an adult child with SMI. CONCLUSIONS: Successful management of these phases must include increasing access to mental health information, mental health screening, early interventions, and violence prevention for adult children and their families. 

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Not sick enough: Experiences of carers of people with mental illness negotiating care for their relatives with mental health services

WHAT IS KNOWN ON THE SUBJECT?: Existing literature provides insight into the general experience of carers of people with a mental illness. Previous studies have found that carers experience a range of emotions when looking after their relatives with a mental illness. However, experiences of carers as they engage with the healthcare system is largely absent from the literature. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This paper identified the experiences of carers when their relatives are experiencing a crisis or acutely unwell. Carers found themselves in the middle between mental health services and their relatives. Strategies employed by carers to ensure their relatives receive adequate care were identified from this study. This paper identified how carers needed to become more assertive in order to receive adequate care for their relatives, and this finding has implications for any future carer education. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: The participants identified the need to work more collaboratively with carers of people with a mental illness as they seek treatment for their relatives in order to achieve better health outcomes for the patients. Improved health service engagement of carers was seen by participants to assist them to better care for their relative. The study also found that there needs to be a clearer definition as to what constitutes mental health crisis and how carers are able to intervene during this period. Services could provide clear information concerning crisis services and in particular triage.

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Wife Caregiver Experiences In the Patient with Prostate Cancer at Home

This study explored the caregiving experiences of wives of patients with prostate cancer. Twenty wives revealed those older, educated, or married longer were less burdened by caregiving, but needed more information. Findings contribute new dimensions in caregiving for patients with prostate cancer and their wives.

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Unmet needs in young adults with a parent with a chronic condition: a mixed-method investigation and measure development study

Rationale: Given the high number of young adults caring for a family member, and the potential for adverse psychosocial outcomes, there is a need for a screening tool, with clinical utility, to identify those most vulnerable to poor outcomes and to aid targeted interventions. Objectives: (i) To determine whether current knowledge from cancer literature regarding young carers is generalisable to chronic conditions and, therefore, whether an existing screening tool could be adapted for this population. (ii) To develop a measure of unmet needs in this population and conduct initial psychometric analysis. Design: This was mixed method interviews in study one informed measure development in study two. Inclusion criteria were as follows: having a parent with a chronic condition and being aged 16-24 years. In study 1, an interpretative phenomenological analysis was conducted on interviews from seven young adults (age range 17-19 years). Study 2 explored factor structure, reliability and validity of the Offspring Chronic Illness Needs Inventory (OCINI). Participants were 73 females and 34 males (mean ages 18.22, SD = 1.16 18.65, SD = 1.25). Main outcome measures OCINI, Depression Anxiety and Stress Scale, and the Adult Carers Quality of Life Scale. Results: Interviews communicated that the impact of their parent's condition went unacknowledged and resulted in psychosocial, support and informational needs. An exploratory principal axis analysis of the OCINI yielded five factors. Significant and positive correlations were found between unmet needs and stress, anxiety, and depression, and inversely with quality of life. Conclusions: The scale has applications in clinical settings where these young people, who are at risk of negative psychological outcomes, may be assessed and unmet needs targeted appropriately. References

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The nutrition and food-related roles, experiences and support needs of female family carers of malnourished older rehabilitation patients

Background: To improve perceived value of nutrition support and patient outcomes, the present study aimed to determine the nutrition and food‐related roles, experiences and support needs of female family carers of community‐dwelling malnourished older adults admitted to rehabilitation units in rural New South Wales, Australia, both during admission and following discharge. Methods: Four female family carers of malnourished rehabilitation patients aged ≥65 years were interviewed during their care‐recipients’ rehabilitation admission and again at 2 weeks post‐discharge. The semi‐structured interviews were audiotaped, transcribed and analysed reflecting an interpretative phenomenological approach by three researchers. A series of ‘drivers’ relevant to the research question were agreed upon and discussed. Results: Three drivers were identified. ‘Responsibility’ was related to the agency who assumed responsibility for providing nutrition support and understanding family carer obligation to provide nutrition support. ‘Family carer nutrition ethos’ was related to how carer nutrition beliefs, knowledge and values impacted the nutrition support they provided, the high self‐efficacy of family carers and an incongruence with an evidence‐based approach for treating malnutrition. ‘Quality of life’ was related to the carers’ focus upon quality of life as a nutrition strategy and outcome for their care‐recipients, as well as how nutrition support impacted upon carer burden. Conclusions: Rehabilitation units and rehabilitation dietitians should recognise and support family carers of malnourished patients, which may ultimately lead to an improved perceived benefit of care and patient outcomes. Intervention research is required to make strong recommendations for practice.

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Images of suffering depicted in diaries of family caregivers in the acute stage of necrotising soft tissue infection: A content analysis

Objectives Severe necrotising soft tissue infections (NSTI) are rare life threatening rapidly progressing bacterial infections requiring immediate diagnosis and treatment. The aim of the study was to explore the experience of family caregivers of patients with necrotising soft tissue infection during the acute stage of disease. Methods Our study had a qualitative descriptive binational design using qualitative content analysis to explore diaries written by close family members (n=15). Participants were recruited from university hospitals in Denmark and Sweden. Findings Three main categories emerged: Trajectory, Treatment, and Patient & Family. The first helped us construct an overview of the NSTI trajectory showing issues of importance to patient and family caregivers. The following categories were analysed further to describe four themes central to the family caregiver experience: craving information, needing to be near, suffering separation and network taking over. Conclusions Necrotising soft tissue infections are uncommon causing shock and concern. Centralised treatment might involve physical separation of patient and family during the acute stage of illness. Family accommodations near the patient and accessibility to adequate communication devices at the bedside are recommended. Health professionals need to keep in mind the importance of information and reassurance on the wellbeing of the family and ultimately of the patient.

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Family Caregivers' Pain Management in End-of-Life Care: A Systematic Review

Context: Pain management was the most identified burden faced by family caregivers in end-of-life caregiving. Objectives: To synthesize current scientific evidence on family caregivers' experience of pain management in end-of-life care. Methods: A systematic review was conducted using CINAHL, Embase, PubMed, and Cochrane Library electronic databases. Data were extracted from each included paper and organized into tables to synthesize the findings. Results: Fourteen research papers focusing on family caregivers' experience of pain management and strategies in end-of-life care were included. Nine were observational studies, 3 were case studies, and 2 were experimental studies. These studies mainly focused on exploring family caregivers' engagement in pain management and communication with the hospice care team about pain control family caregivers' knowledge, skills, and self-efficacy in pain management and family caregivers' concerns and experience of pain management. Conclusion: This review identified themes similar to previous reviews on family caregivers of patients with cancer or in palliative care: inadequate knowledge and assessment skills in pain management, misunderstanding of pain medications, and poor communication with the care team. Future research should design educational programs and material for family caregivers to improve their pain management knowledge and skills, communication, and engagement in care. The scientific knowledge on this topic is scarce, and level of evidence is low it is therefore imperative to have more exploratory studies to expand the quality and quantity of evidence and increase our understanding of family caregivers' needs and barriers to pain management based on larger and more diverse patient and caregiver samples. 

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Supporting relatives and carers at the end of a patient's life

All doctors, irrespective of their specialty or the setting in which they work, will care for patients who die. Around half of all deaths occur in hospitals. Evidence suggests that the quality of communication around this process is poorer in hospitals than in other settings, according to responses from relatives who have experienced bereavement. Over half of NHS complaints concern care of the dying.This article discusses how to best support relatives and carers at the end of a patient's life. While the focus is on the hospital setting, the principles are applicable to community and care home settings. In this article, "relative" encompasses family members, care givers, and those close to the patient. The article presumes throughout that the patient has given consent for information to be shared with relatives. 

  • Effective support can make a considerable difference to the relatives of people who are dying; helping to allay fears, reducing stress and anxiety, and minimising suffering in bereavement.
  • Clear communication around practical considerations (death certificate, funeral arrangements, information around autopsy, etc) and psychosocial support (normalising grief, cultural and spiritual considerations) is key.
  • Doctors need to familiarise themselves with local systems and protocols. Written communication in addition to verbal is beneficial.
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Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool

Objective: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers. Method: The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialing the CSNAT intervention, which involved two visits from care advisors (6–8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire. Results: A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as “knowing what to expect in the future,” “knowing who to contact if concerned,” and “equipment to help care.” The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family. Significance of Results: The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people with a motor neurone disease.

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“Ensure that you are well aware of the risks you are taking…”: actions and activities medical tourists’ informal caregivers can undertake to protect their health and safety

Background When seeking care at international hospitals and clinics, medical tourists are often accompanied by family members, friends, or other caregivers. Such caregiver-companions assume a variety of roles and responsibilities and typically offer physical assistance, provide emotional support, and aid in decision-making and record keeping as medical tourists navigate unfamiliar environments. While traveling abroad, medical tourists’ caregiver-companions can find themselves confronted with challenging communication barriers, financial pressures, emotional strain, and unsafe environments. Methods To better understand what actions and activities medical tourists’ informal caregivers can undertake to protect their health and safety, 20 interviews were conducted with Canadians who had experienced accompanying a medical tourist to an international health care facility for surgery. Interview transcripts were subsequently used to identify inductive and deductive themes central to the advice research participants offered to prospective caregiver-companions. Results Advice offered to future caregiver-companions spanned the following actions and activities to protect health and safety: become an informed health care consumer assess and avoid exposure to identifiable risks anticipate the care needs of medical tourists and thereby attempt to guard against caregiver burden become familiar with important logistics related to travel and anticipated recovery timelines and take practical measures to protect one’s own health. Conclusion Given that a key feature of public health is to use research findings to develop interventions and policies intended to promote health and reduce risks to individuals and populations, the paper draws upon major points of advice offered by study participants to take the first steps toward the development of an informational intervention designed specifically for the health and safety needs of medical tourists’ caregiver companions. While additional research is required to finalize the content and form of such an intervention, this study provides insight into what practical advice former caregiver-companions state should be shared with individuals considering assuming these roles and responsibilities in the future. In addition, this research draws attention to the importance of ensuring that such an intervention is web-based and readily accessible by prospective caregiver-companions.

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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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Experience and needs of family members of patients treated with extracorporeal membrane oxygenation

Aims and objectives: To explore the experiences of family members of patients treated with extracorporeal membrane oxygenation. Background: Sudden onset of an unexpected and severe illness is associated with an increased stress experience of family members. Only one study to date has explored the experience of family members of patients who are at high risk of dying and treated with extracorporeal membrane oxygenation. Design: A qualitative descriptive research design was used. Methods: A total of 10 family members of patients treated with extracorporeal membrane oxygenation were recruited through a convenient sampling approach. Data were collected using open‐ended semi‐structured interviews. A six‐step process was applied to analyse the data thematically. Four criteria were employed to evaluate methodological rigour. Results: Family members of extracorporeal membrane oxygenation patients experienced psychological distress and strain during and after admission. Five main themes (Going Downhill, Intensive Care Unit Stress and Stressors, Carousel of Roles, Today and Advice) were identified. These themes were explored from the four roles of the Carousel of Roles theme (decision‐maker, carer, manager and recorder) that participants experienced. Conclusion: Nurses and other staff involved in the care of extracorporeal membrane oxygenation patients must pay attention to individual needs of the family and activate all available support systems to help them cope with stress and strain. Relevance to clinical practice: An information and recommendation guide for families and staff caring for extracorporeal membrane oxygenation patients was developed and needs to be applied cautiously to the individual clinical setting.

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Would mobile health be a solution to rehospitalization?

It has been well‐established that social environmental factors can increase the risk of rehospitalization for people receiving home healthcare services. For caregivers who might be challenged to keep up with sometimes unfamiliar health monitoring tasks or to know when to seek help, mobile health technology offers the potential to enhance the skills of informal caregivers and to improve the communication between home and clinical care. This paper described our recent work to determine the usability, functionality, and style of interaction that would be needed to provide an effective and well‐accepted tool. Caregivers would likely adopt new mobile health tools, as long as care is taken to eliminate potential barriers, for example, by providing adequate training, and to include design aspects that enhance one's motivation to use a tool, such as by supporting autonomy and engagement.

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Supporting Family Caregivers of Advanced Cancer Patients: A Focus Group Study

Objective: As the first stage in developing an intervention for family caregivers of individuals with advanced cancer, we conducted a focus group study to understand their needs. Background: Family caregivers play an important role in the care of advanced cancer patients. Despite substantial burden and distress experienced by family caregivers of individuals with advanced cancer, their needs are not addressed systematically. Method: The study took place at a large urban cancer center in Canada. We conducted 2 focus groups: one with 7 current family caregivers, the other with 7 bereaved caregivers. Participants were asked about their support needs while providing care, how and when they preferred to receive support, and the perceived barriers and facilitators to addressing their support needs. Responses were analyzed using the conventional content analysis method. Results: Family caregivers wished for support in relation to 3 domains: decision‐making in the face of uncertainty, information about death and dying, and current and anticipated emotional distress. They identified 3 barriers to receiving support: the organization of cancer care around the patient, rather than the family; the timing of information provision; and caregivers' tendency to dismiss their own needs. Caregivers expressed a strong need for caregiver‐specific support. Conclusion: This study allowed us to identify caregiver‐perceived intervention needs, barriers to access and continuity of intervention, and suggestions for intervention design. Implications: This information is of value to inform the design of interventions for this population.

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The intensity of caregiving is a more important predictor of adverse bereavement outcomes for adult-child than spousal caregivers of patients who die of cancer

Increasing attention is being paid to specific difficulties experienced by bereaved family caregivers (FCs). Limited capacity within health and social care structures results in high intensity of informal caregiving. The focus of recent research is the identification of specific predictors of adverse FC outcomes, in order to identify those FCs who will benefit most from intervention and support. Research is challenged by multiple influencing and confounding variables. This study aimed to evaluate factors of care associated with higher grief intensity in bereaved adult–child (AC‐FCs) and spousal FCs (S‐FCs). Data from the Qualycare study, a mortality follow‐back study of bereaved FCs of patients who died of cancer, was analyzed. Four hundred eighty‐four patient–FC dyads were included: 246 AC‐FCs and 238 S‐FCs. S‐FCs received more formal (SPC) (p = 0.026), and AC‐FCs more informal (p < 0.001), support. AC‐FCs were more likely to continue to work while caregiving (p < 0.001). Patients with AC‐FCs were more likely to spend time in and die in a nursing home (p < 0.001). Higher grief intensity was associated with higher caregiving intensity (p < 0.001), as well as other factors. AC‐FCs whose relative died in NH experienced significantly lower grief intensity (p < 0.001). Intensity of caregiving predicted 11.6% of variance in grief intensity for AC‐FCs compared to 0.5% for S‐FCs. The ‘relief model’ of bereavement is relevant for AC‐FCs. The support needs of AC‐FCs and S‐FCs differ. AC‐FCs should be targeted for practical supports and interventions, in order to support home‐death, if desired by patient and FC, and optimize bereavement outcomes.

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Improving Stroke Caregiver Readiness for Transition From Inpatient Rehabilitation to Home

Purpose: As the population ages, older adults are more often living with functional limitations from chronic illnesses, such as stroke, and require assistance. Because stroke occurs suddenly, many stroke family caregivers in the United States are unprepared to assume caregiving responsibilities post-discharge. Research is limited on how family members become ready to assume the caregiving role. In this study, we developed a theoretical model for improving stroke caregiver readiness and identifying gaps in caregiver preparation. Design and Methods: We interviewed 40 stroke family caregivers caring for 33 stroke survivors during inpatient rehabilitation and within 6 months post-discharge for this grounded theory study. Data were analyzed using dimensional analysis and constant comparative techniques. Results: Caregivers identified critical areas where they felt unprepared to assume the caregiving role after discharge from inpatient rehabilitation. Steps to improve preparation include (a) conducting a risk assessment of the patient and caregiver; (b) identifying and prioritizing gaps between the patient’s needs and caregiver’s commitment and capacity; and (c) developing a plan for improving caregiver readiness. Implications: The model presented provides a family-centered approach for identifying needs and facilitating caregiver preparation. Given recent focus on improving care coordination, care transitions, and patient-centered care to help improve patient safety and reduce readmissions in this population, this research provides a new approach to enhance these outcomes among stroke survivors with family caregivers.

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Living With Hepatocellular Carcinoma Near the End of Life: Family Caregivers' Perspectives

Purpose/Objectives: To explore family caregivers’ perspectives of caring for patients with terminal hepatocellular carcinoma (HCC) as patients approached the end of life. Research Approach: Longitudinal, qualitative descriptive design. Setting: Oregon Health and Science University in Portland and Veterans Affairs Portland Health Care System in Oregon. Participants: 13 family caregivers with a mean age of 56 years (range = 22–68 years). The majority of family caregivers were female (n = 10) and identified as White (n = 11). Methodologic Approach: Interview data were collected from family caregivers once a month for as many as six months, for a total of 39 interviews. Data were analyzed using conventional content analysis. Findings: Five core categories and nine subcategories were identified. From the time of the terminal diagnosis to the end of life, family caregivers felt unprepared, uncertain, and in need of information. They struggled with whether symptoms were HCC- or cirrhosis-related. Interpretation: Nurses can support family caregivers by eliciting their knowledge and concerns, and attending to symptom presentation and interpretation and to treatment challenges. Understanding challenges caregivers experience is crucial for developing interventions that address their desire for information, support, and help along the HCC disease trajectory. Implications for Nursing: Nurses play a critical role in preparing caregivers to understand the importance of pain assessment and management and early referral to palliative care.

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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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Help-Seeking in Suicidal Situations: Paramount and yet Challenging. Interactions between Significant Others of Suicidal Persons and Health Care Providers

Significant others are often crucial for suicidal persons or suicide attempters’ access to care, yet little is known about their efforts to seek help. This article presents the findings of a qualitative pilot study carried out in Switzerland on the help-seeking process of 18 significant others, their perception of the care received by their loved one, and the interactions and collaboration they experienced with professionals. Most significant others repeatedly sought out support for their loved one and themselves. The help-seeking process seemed mostly difficult, was seldom successful on the first attempt, and was filled with multiple difficulties, such as availability and continuity of care and cooperation issues with professionals. Two-thirds of participants were not satisfied with the care provided to their loved ones and half of them faced challenges in their cooperation with professionals, i.e., poor sharing of information or not being acknowledged as partners or supported by professionals. Based on their experience, providing education about suicidal crises and care programs to significant others might lighten their burden and improve their cooperation with professionals, who in turn may benefit from training in communication issues and specific methods of cooperation with significant others in suicidal situations.

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Stakeholders' views and experiences of care and interventions for addressing frailty and pre-frailty: A meta-synthesis of qualitative evidence

Frailty is a common condition in older age and is a public health concern which requires integrated care and involves different stakeholders. This meta-synthesis focuses on experiences, understanding, and attitudes towards screening, care, intervention and prevention for frailty across frail and healthy older persons, caregivers, health and social care practitioners. Studies published since 2001 were identified through search of electronic databases; 81 eligible papers were identified and read in full, and 45 papers were finally included and synthesized. The synthesis was conducted with a meta-ethnographic approach. We identified four key themes: Uncertainty about malleability of frailty; Strategies to prevent or to respond to frailty; Capacity to care and person and family-centred service provision; Power and choice. A bottom-up approach which emphasises and works in synchrony with frail older people's and their families' values, goals, resources and optimisation strategies is necessary. A greater employment of psychological skills, enhancing communication abilities and tools to overcome disempowering attitudes should inform care organisation, resulting in more efficient and satisfactory use of services. Public health communication about prevention and management of frailty should be founded on a paradigm of resilience, balanced acceptance, and coping. Addressing stakeholders’ views about the preventability of frailty was seen as a salient need.

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The role of informal caregivers at the end of life: providing support through Advance Care Planning

In the palliative phase of a person's illness, the needs of the patient and informal caregivers are paramount. Caregivers often look to palliative care practitioners for support, guidance and emotional comfort. This article reviews the role of the informal caregiver at the end of life, summarising their concerns and needs. The paper also highlights caregiver difficulties in making the coping transition when the patient's medical condition becomes advanced and they require end-of-life care. The focus of the review is placed on discussions about Advanced Care Planning (ACP). ACP is a complex legal, ethical and practical issue that can enable caregivers to consider future strategies and enable them to provide high quality care at the end of life. The paper looks at some of the ethical and legal issues associated with this sensitive end-of-life issue.

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Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study

Background/Aims: Despite reporting high levels of burden, supporters of people with young onset dementia (YOD) underuse formal community services. Previous quantitative studies in YOD are of limited utility in guiding service design because they did not consider important contextual barriers to service use. The aim of this study was to identify all relevant barriers and describe the service features considered most important to improving uptake by people with YOD and their supporters.

Methods: Eighty-six people with consensus-confirmed YOD (mean onset age 55.3 years) and/or their primary supporter participated in quantitative interviews, and 50 also participated in one of seven qualitative focus groups. Interview participants reported levels of community service use and reasons for non-use, functional impairment, behavioural and psychological symptoms, supporter burden, social network, and informal care provision. Focus group participants expanded on reasons for non-use and aspects of an ideal service.

Results: Although at least one community service was recommended to most participants (96.8%), 66.7% chose not to use one or more of these. Few of the clinical or demographic factors included here were related to service use. Qualitative analyses identified that lack of perceived need, availability, and YOD-specific barriers (including ineligibility, unaffordability, lack of security, lack of childcare) were commonly reported. Five aspects of an ideal service were noted: unique, flexibile, affordable, tailored, and promoting meaningful engagement.

Conclusion: People with YOD and their families report that formal community services do not meet their personal and psychological needs. Researchers can provide ongoing assessment of program feasibility, suitability, and generalisability.

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Palliative Care and Parkinson's Disease: Caregiver Perspectives

Background: Palliative care for Parkinson's disease (PD) is an emerging area of interest for clinicians, patients and families. Identifying the palliative care needs of caregivers is central to developing and implementing palliative services for families affected by PD. The objective of this paper was to elicit PD caregiver needs, salient concerns, and preferences for care using a palliative care framework.

Materials and Methods: 11 PD caregivers and one non-overlapping focus group (n = 4) recruited from an academic medical center and community support groups participated in qualitative semi-structured interviews. Interviews and focus group discussion were digitally recorded, transcribed and entered into ATLAS.ti for coding and analysis. We used inductive qualitative data analysis techniques to interpret responses.

Results: Caregivers desired access to emotional support and education regarding the course of PD, how to handle emergent situations (e.g. falls and psychosis) and medications. Participants discussed the immediate impact of motor and non-motor symptoms as well as concerns about the future, including: finances, living situation, and caretaking challenges in advanced disease. Caregivers commented on the impact of PD on their social life and communication issues between themselves and patient. All participants expressed interest and openness to multidisciplinary approaches for addressing these needs.

Conclusions: Caregivers of PD patients have considerable needs that may be met through a palliative care approach. Caregivers were receptive to the idea of multidisciplinary care in order to meet these needs. Future research efforts are needed to develop and test the clinical and cost effectiveness of palliative services for PD caregivers.

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Neuro-oncology family caregivers' view on keeping track of care issues using eHealth systems: it's a question of time

Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients’ best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers’ satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use ‘blended care’ instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.

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Needs of family caregivers in home care for older adults

Objective: to reveal the felt and normative needs of primary family caregivers when providing instrumental support to older adults enrolled in a Home Care Program in a Primary Health Service in the South of Brazil.

Methods: using Bradshaw's taxonomy of needs to explore the caregiver's felt needs (stated needs) and normative needs (defined by professionals), a mixed exploratory study was conducted in three steps: Descriptive quantitative phase with 39 older adults and their caregiver, using a data sheet based on patient records; Qualitative exploratory phase that included 21 caregiver interviews, analyzed by content analysis; Systematic observation, using an observation guide with 16 caregivers, analyzed by descriptive statistics.

Results: the felt needs were related to information about instrumental support activities and subjective aspects of care. Caregivers presented more normative needs related to medications care.

Conclusion: understanding caregivers' needs allows nurses to plan interventions based on their particularities.

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An isolated involvement in mental health care – experiences of parents of young adults

Aims and objectives: To explore parents’ involvement in the informal and professional care of their young adult child with mental illness. A further aim was to examine concepts in the caring theory of ‘Involvement in the light–Involvement in the dark’ in the context of mental health care.

Background: Mental illness has increased among young people in high‐income countries, and suicide is now the leading cause of death for this group. Because of their disease, these young people may have difficulty in carrying out daily, taken‐for‐granted, tasks. Consequently, they often become dependent on their parents, and their parents shoulder a considerable responsibility.

Design: A secondary descriptive design with a deductive content analysis was used.

Methods: Ten parents who have a son or daughter with long‐term mental illness (aged 18–25 years) were interviewed. The deductive analysis was based on the caring theory of ‘Involvement in the light–Involvement in the dark’.

Results: The results are described using the following concepts in the theory: ‘Knowing’, ‘Doing’, ‘Being’ and ‘Attitude of the health professionals’. The result are to a great extent consistent with the ‘Involvement in the dark’ metaphor, which describes an isolated involvement in which the parents were not informed, seen or acknowledged by the health professionals. Continuous support by professionals with a positive attitude was described as being of decisive importance for meaningful involvement. The theory's transferability is strengthened to the mental health care context.

Conclusions: Parents have a considerable need for knowledge that can enable them to choose how they should act (be) and what they should do, in order to help and support their child.

Relevance to clinical practice: Since the patient, the family members and the professionals are mutually dependent, it is important to make use of each other’s knowledge in a partnership to achieve a common caring strategy.

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Caregiving-related needs of family caregivers of older Singaporeans

Objective: To describe the extent and correlates of caregiving‐related needs among family caregivers of Singaporeans aged 75+ with ≥1 activity of daily living limitations (care‐recipients).

Methods: National survey data of 1181 care‐recipient/caregiver dyads were used. Caregiver's report (yes/no) of 16 needs was assessed. Care‐recipient and caregiver correlates of each need were determined through logistic regression analysis.

Results: Caregiving‐related needs were expressed by 42.3% caregivers. The most commonly reported need was keeping care‐recipient safe at home (24.5%). Needs concerned with caring for care‐recipients were more frequent than those concerned with the caregiver's own needs. The most frequent correlate was care‐recipient's extent of mood impairment (associated with 13 needs).

Conclusion: Caregivers should not neglect themselves when engaging in care provision. Families and service providers should explore whether reported lack of needs reflects limited awareness and/or under‐reporting.

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"I Don't Believe in Leading a Life of My Own, I Lead His Life": A Qualitative Investigation of Difficulties Experienced by Informal Caregivers of Stroke Survivors Experiencing Depressive and Anxious Symptoms

Objectives: Health and social care services are increasingly reliant on informal caregivers to provide long-term support to stroke survivors. However, caregiving is associated with elevated levels of depression and anxiety in the caregiver that may also negatively impact stroke survivor recovery. This qualitative study aims to understand the specific difficulties experienced by caregivers experiencing elevated symptoms of anxiety and depression.; Methods: Nineteen semi-structured interviews were conducted with caregivers experiencing elevated levels of depression and anxiety, with a thematic analysis approach adopted for analysis.; Results: Analysis revealed three main themes: Difficulties adapting to the caring role; Uncertainty; and Lack of support.; Conclusions: Caregivers experienced significant difficulties adapting to changes and losses associated with becoming a caregiver, such as giving up roles and goals of importance and value. Such difficulties persisted into the long-term and were coupled with feelings of hopelessness and worry. Difficulties were further exacerbated by social isolation, lack of information and poor long-term health and social care support.; Clinical Implications: A greater understanding of difficulties experienced by depressed and anxious caregivers may inform the development of psychological support targeting difficulties unique to the caring role. Improving caregiver mental health may also result in health benefits for stroke survivors themselves.

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Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review

Background: This systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment.; Methods: Ten electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes.; Results: Fifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1-84.4%), fatigue (18-76.3%), and "being informed about benefits and side-effects of treatment" (4-66.7%). The most commonly identified  unmet needs for informal caregivers were information needs, including illness and treatment information (26-100%) and care-related information (21-100%). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N = 8) and Problems and Needs in Palliative Care questionnaire (N = 5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies.; Conclusion: Both advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated  from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.

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The Self-Care Needs and Behaviors of Dementia Informal Caregivers: A Systematic Review

Background: More than 5.4 million informal caregivers (ICGs) in the United States care for persons with dementia (PWD). Failure of ICGs to incorporate self-care into their routine may lead to adverse health consequences. Caregivers and researchers need to understand the evidence around dementia ICGs' self-care practices.; Purpose: To synthesize evidence on the self-care needs and behaviors of Alzheimer's and dementia ICGs and its research implications.; Methods: PubMed, CINAHL, Scopus, and Web of Science were searched to conduct a systematic review of research. Orem's self-care theory and a concept analysis of self-management behaviors provided a framework for the review.; Results: Three themes emerged from 29 included studies: self-care needs and behaviors of ICGs, barriers to performing self-care, and enablers of self-care. The self-care needs of dementia ICGs included sleep, social engagement and support, and leisure activities. Self-care behaviors identified by this review were engaging in activities with the PWD, spiritual and religious activities, and taking a break from caregiving. Barriers to self-care were gender roles, self-sacrificing, minority ethnicity, and burden of caregiving. Enabling self-care involved acknowledging personal consequences of caregiving, balancing self-care needs with the PWD's needs, and positioning oneself as an objective/subjective duality.; Implications: Self-care is a dynamic, challenging aspect to caregiving, but supporting evidence is often limited or cannot be generalized. More studies are needed that include random sampling, heterogeneous samples, and quantitative methods. Additional research is needed to understand how self-care needs, behaviors, and barriers differ by caregiver race/ethnicity, gender, or relationship to the PWD.

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Long-term Care Provision and the Well-Being of Spousal Caregivers: An Analysis of 138 European Regions

Objectives: The individual burden of caring for one's relatives not only depends on care characteristics but is also related to contextual factors. The objective of this study is to determine whether regional formal long-term care provision is linked to the well-being of spousal caregivers introducing the concept of "control" as central pathway to explain this link.; Method: We applied multilevel analysis using data from the Survey of Health, Ageing and Retirement in Europe (SHARE) from over 29,000 Europeans and 1,800 spousal caregivers located in 138 regions in 11 countries to analyze the effects of regional contexts on caregiver well-being. The provision of formal care in a region was measured by the number of long-term care beds in nursing and residential homes among the older population.; Results: We found that spousal caregivers' well-being, measured in terms of life satisfaction, loneliness, and depression, was positively linked to the regional availability of formal care, which is partly due to higher perceived control in regions with more formal care provision.; Discussion: Our results suggest that formal care supply is essential not only for care recipients but also for caregivers: perceived alternatives to the private care arrangement go along with greater well-being of informal caregivers.

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Informal Caregivers' Experiences and Perceptions of a Web-Based Peer Support Network: Mixed-Methods Study

Background: Web-based peer support interventions have shown promise in reducing social isolation and social support deficits among informal caregivers, but little research has examined how caregivers use and perceive these interventions.; Objective: In this study, we examined utilization and perceptions of a Web-based social support intervention for informal caregivers of wounded, ill, and injured United States military service members and veterans.; Methods: This was a mixed-methods study that used quantitative survey data and qualitative data from focus groups and interviews with informal caregivers enrolled in a Web-based peer support intervention to explore their use and perceptions of the intervention. The intervention was delivered via a website that featured interest groups organized around specific topics, webinars, webchats, and messaging functionality and was moderated by professionally trained peers. This study occurred in the context of a quasi-experimental outcome evaluation of the intervention, where intervention participants were compared with a group of military caregivers who were not enrolled in the intervention.; Results: Survey findings indicated that caregivers used the website infrequently, with 60.7% (128/211) visiting the website once a month or less, and passively, with a minority (32/144, 22.2%) of users (ie, those who had visited the website at least once during the past 3 months, N=144) posting comments or links to the network. Nonetheless, most users (121/144, 84.0%) endorsed moderate or greater satisfaction with the website on the survey, and focus group and interview participants reported benefiting sufficiently from passive use of the website (eg, reading posts). Quantitative and qualitative findings suggested that users viewed the website primarily as a source of informational support. Among 63.2% (91/144) of users who completed the survey, the most commonly reported network-related activity was obtaining information from the network's resource library, and focus group and interview participants viewed the network primarily as an informational resource. Focus group and interview participants expressed an unmet need for emotional support and the desire for a more personal touch in the forms of more active engagement with other caregivers in the network and the creation of local, in-person support groups for caregivers.; Conclusions: These findings suggest that Web-based peer support interventions may lend themselves better to the provision of informational (vs emotional) support and may need to be supplemented by in-person peer support groups to better meet caregivers' needs for emotional support.

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A qualitative exploration of the experiences, needs, and roles of caregivers during and after cancer treatment: "That's what I say. I'm a relative survivor"

Purpose: The transition out of acute cancer treatment has been identified as a time of stress and uncertainty for cancer survivors, but little is known about how caregivers fare during this period. In this paper, we discuss caregiving work up to and including transition from initial care and the needs of caregivers during transition and beyond.; Methods: We held four focus groups with breast, prostate, and colorectal cancer survivors who had completed treatment with intent to cure and two with caregivers for the same population. Participants were affiliated with either an urban academic or rural community cancer center. The discussions focused on cancer-related experiences and needs during the transition out of acute cancer care.; Results: Focus groups included 47 people: 28 survivors and 19 caregivers. Three key caregiving themes identified the significance of support for the patient in the clinic, support for the patient in the home, and for caregiver self-care.; Conclusions: Discussions revealed aspects of caregiving that created difficulties for the caregiver themselves or between the caregiver and the cancer survivor. Caregiver experiences and needs may warrant explicit attention as survivors and caregivers are adjusting to a "new normal" that is no longer centered on getting through treatment.; Implications For Cancer Survivors: Patients and informal caregivers are often conceptualized as a "unit of care"; consideration of the needs of both is important for the provision of appropriate and effective health services.

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Caregivers experiences of nursing care for relatives hospitalized during manic episode: A phenomenological study

Purpose: To describe the experiences of informal caregivers with the nursing care received by relatives hospitalized for mania.; Design and Methods: Multicenter phenomenological study using open interviews. Data were analyzed using the Stevick-Colaizzi-Keen method.; Findings: The essence of the experiences was the importance of communication, about being informed and involved in treatment during hospitalization of their relative. The experiences depended on the nature of the relation between participant and relative.; Practice Implications: Nurses should listen to caregivers' experiences, inquire about the expectations of caregivers regarding nursing care, and advise informal caregivers on how to take care of their relatives.

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The unmet support needs of carers of older Australians: prevalence and mental health

Background: Population aging places greater demands on the supply of informal carers. The aims of this study were to examine (1) the types of unmet support needs of carers of older Australians and (2) the association of unmet needs with mental health.; Methods: Utilizing new data from the 2015 Australian Bureau of Statistics (ABS) Survey of Disability, Ageing and Carers, we calculated the prevalence of carers experiencing specific and multiple unmet needs for support, using single and multiple item measures. Logistic regression models were fitted to examine the association between unmet needs and psychological distress (using the Kessler psychological distress scale), once demographic and health factors were controlled for.; Results: In 2015, 35% of carers of older Australians cited at least one unmet need for support. Among this group, almost two-thirds cited multiple unmet support needs (64.7%). The most prevalent types of unmet needs included financial (18%), physical (13%), and emotional support (12%), as well as additional respite care and support to improve carer health (12%). After controlling for demographic and health characteristics of the carer, having any unmet need for support increased the odds of psychological distress by twofold (OR = 2.20, 95% CI = 1.65, 2.94). With each successive unmet need for support, the odds of psychological distress increased 1.37 times (OR = 1.36, 95% CI = 1.22, 1.54). Those who had received assistance with care, but required further support were 1.95 times more likely (OR = 1.95, 95% CI = 1.17, 3.24) to be in distress and those who had not received care assistance were about 2.4 times more likely (OR = 2.38 95% OR = 1.56, 3.62) to be in distress relative to those with no unmet need.; Conclusions: Addressing unmet support needs of carers is important, not only for the planning of services for carers in an aging population, but also because of the association between unmet support needs and carers mental health.

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The Carer Support Needs Assessment Tool (CSNAT)

The CSNAT is an evidence-based tool that facilitates tailored support for family members and friends (carers) of adults with long term life-limiting conditions. The research underpinning this tool was informed by carers and practitioners.

It comprises 14 domains (broad areas of need) in which carers commonly say they require support. Carers may use this tool to indicate further support they need both to enable them to care for their family member or friend and to preserve their own health and well-being within their caregiving role.

It is short and simple to use for both carers and practitioners. Online training is also available

The online training can be accessed free of charge and allows health and social care practitioners to access Continuing Professional Development (CPD) accredited training in how to implement The CSNAT Approach, in order to best meet the needs of carers of patients with life-limiting illness. The training also addresses key organisational issues to be considered in planning, piloting and sustaining implementation in the longer term.

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Caring for seniors living with dementia means caring for their caregivers too

To improve the care of seniors living with dementia, current initiatives typically target better identification and treatment of the patient. Our recent survey, however, shows we should also focus more on the needs of the informal caregivers who care for this population in primary care settings. This three-round Delphi survey sought caregivers' views on the most frequent and difficult decisions that seniors with dementia, their informal caregivers, and health care providers face in primary care settings in the province of Quebec. Respondents consisted of 31 health care professionals, informal caregivers, managers, representatives of community-based organizations devoted to these seniors, and clinical researchers involved in the organization of care or services to seniors with dementia. When we asked respondents to rank 27 common but difficult decisions involving benefit/harm trade-offs, 83% ranked the decision to choose an option to reduce the burden of informal caregivers as one of the five most important decisions. Choosing a treatment to manage agitation, aggression or psychotic symptoms followed closely, with 79% of respondents selecting it as one of the five most important decisions. Our results point to the importance of attending to the needs of informal caregivers and improving the management of behavioural and psychological symptoms of dementia.

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Informal caregivers' perspectives on health of and (potentially inappropriate) medication for (relatively) independent oldest-old people - a qualitative interview study

Background: Oldest-old persons frequently receive potentially inappropriate medication. Medication use takes place under the patients' informal caregivers' influence. We explored informal caregivers' perspectives on medication of (relatively) independent oldest-old persons to identify starting points for safer medication prescription/handling.; Methods: In this exploratory qualitative interview study we interviewed 45 informal caregivers of 45 oldest-old persons (23 with potentially inappropriate medication/22 without potentially inappropriate medication). Interviews were recorded, transcribed and content analyzed (deductive/inductive coding).; Results: Interviewees had little knowledge about/influence on oldest-old persons' medication, but declared to monitor oldest-old persons' needs for assistance. They were unaware of the concept of potentially inappropriate medication but sometimes sensitive to substance dependency. Most informal caregivers were satisfied with the oldest-old persons' medication and viewed medication as increasing the patients' quality of life. Inadequate communication was found between informal caregivers and general practitioners.; Conclusions: Influence of informal caregivers on (relatively) independent oldest-old persons' medication seems low. Stakeholders need to be aware that there is a transitional period where independency of oldest-old persons decreases and support needs increase which may be missed by (in-)formal caregivers or concealed by oldest-old persons. Monitoring patients' medication competencies; measures supporting communication between informal caregivers and health care professionals; provision of educational and support resources for informal caregivers and the acceptance of oldest-old persons' increasing assistance needs may increase medication safety.

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Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services - A systematic review and meta-ethnography

Objective: To describe and explain stroke survivors and informal caregivers' experiences of primary care and community healthcare services. To offer potential solutions for how negative experiences could be addressed by healthcare services.; Design: Systematic review and meta-ethnography.; Data Sources: Medline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015).; Eligibility Criteria: Primary qualitative studies focused on adult community-dwelling stroke survivors' and/or informal caregivers' experiences of primary care and/or community healthcare services.; Data Synthesis: A set of common second order constructs (original authors' interpretations of participants' experiences) were identified across the studies and used to develop a novel integrative account of the data (third order constructs). Study quality was assessed using the Critical Appraisal Skills Programme checklist. Relevance was assessed using Dixon-Woods' criteria.; Results: 51 studies (including 168 stroke survivors and 328 caregivers) were synthesised. We developed three inter-dependent third order constructs: (1) marginalisation of stroke survivors and caregivers by healthcare services, (2) passivity versus proactivity in the relationship between health services and the patient/caregiver dyad, and (3) fluidity of stroke related needs for both patient and caregiver. Issues of continuity of care, limitations in access to services and inadequate information provision drove perceptions of marginalisation and passivity of services for both patients and caregivers. Fluidity was apparent through changing information needs and psychological adaptation to living with long-term consequences of stroke.; Limitations: Potential limitations of qualitative research such as limited generalisability and inability to provide firm answers are offset by the consistency of the findings across a range of countries and healthcare systems.; Conclusions: Stroke survivors and caregivers feel abandoned because they have become marginalised by services and they do not have the knowledge or skills to re-engage. This can be addressed by: (1) increasing stroke specific health literacy by targeted and timely information provision, and (2) improving continuity of care between specialist and generalist services.; Systematic Review Registration Number: PROSPERO 2015:CRD42015026602.

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Living with an indwelling urethral catheter in a community setting: Exploring triggers for unscheduled community nurse "out-of-hours" visits

Aims and Objective: To explore the experiences of community patients living with a urethral catheter and those caring for them.; Background: Living at home with an indwelling urethral catheter often results in consequences that create a double-edged burden: first, on patients and their relative carers and second, in terms of unscheduled community nurse service "out-of-hours" provision.; Design: One-to-one interviews were conducted with patients living at home, their relative carers, qualified community nurses, augmented home carers and healthcare assistant. Quantitative data in relation to frequency, duration and reason for visits were extracted from the community nurse "out-of-hours" service database.; Results: Quantitative data showed that 20% of all community nurses unscheduled "out-of-hours" visits were triggered by an indwelling urethral catheter consequence. Qualitative data revealed that health and social care staff felt knowledgeable and skilled in urethral catheter management. Conversely, patients and relative carers felt poorly equipped to manage the situation when something went wrong. The majority of patients described the catheter as being a debilitating source of anxiety and pain that reduced their quality of life.; Conclusion: Urethral catheter complications are frequent and impact seriously on quality of life with informal carers also affected. Community nurses experienced frequent unscheduled visits. Patients often feel isolated as well as lacking in knowledge, skills and information on catheter management. Having better urethral catheter information resources could increase patient and relative carer confidence, encourage self-care and problem solving, as well as facilitate meaningful consistent dialogue between patients and those who provide them with help and support.; Relevance To Clinical Practice: Better patient information resources regarding urethral catheter management have potential to improve patient and relative carer quality of life and reduce service provision burden.

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Medication management activities performed by informal caregivers of older adults

Background: Medication management is commonly performed by informal caregivers, yet they are often unprepared and ill-equipped to manage complex medication regimens for their older adult care recipients. In order to develop interventions that will enhance the caregiver's ability to safely and confidently manage medications, it is critical to first understand caregiver challenges and unmet needs related to medication management.; Objectives: To explore how informal caregivers manage medications for their older adult care recipients by identifying the activities involved in medication management and the tools or strategies used to facilitate these activities.; Methods: Four focus groups with caregivers of older adults were conducted with 5-9 caregivers per group. Participants were asked to describe the medication management activities performed and the tools or strategies used to facilitate these activities. Focus groups were recorded, transcribed verbatim, and analyzed for themes using an inductive approach.; Results: Caregivers were commonly involved in 2 types of activities: direct activities requiring physical handling of medications such as obtaining medications, preparing pill boxes, and assisting with medication administration; and indirect activities that were more complex and required more of a cognitive effort by the caregiver, such as organizing and tracking medications, gathering information, and making treatment decisions. They utilized a variety of tools and strategies to support these medication management activities; however, these approaches often needed to be modified or personalized to meet the specific needs of their caregiving situation.; Conclusions: Informal caregivers play a vital role in ensuring safe and appropriate medication use by older adults. Medication management is complex and involves many activities that are supported through the use of a variety of tools and strategies that have been adapted and individualized to each specific caregiving scenario. Caregivers should be an important component of interventions that aim to improve medication use among older adults.

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Oncology Nurses' Knowledge, Confidence, and Practice in Addressing Caregiver Strain and Burden

Objectives: To describe nurses' practices, confidence, and knowledge of evidence-based interventions for cancer caregiver strain and burden and to identify factors that contribute to these aspects. ; Sample & Setting: 2,055 Oncology Nursing Society members completed an emailed survey.; Methods & Variables: Pooled analysis of survey results. Variables included the baseline nursing assessment, intervention, confidence, knowledge, strategies used, and barriers encountered. ; Results: Nurses tend to overestimate the strength of evidence for interventions not shown to be effective and have moderate confidence in assessing and intervening with caregivers. Having been an informal caregiver and having received care from an informal caregiver were associated with higher reported practice and confidence. Major strategies used were referral to social workers and others. Barriers reported were financial, caregiver emotional responses, and distance. ; Implications For Nursing: An opportunity exists to increase nurses' knowledge and confidence in assessment and intervention with caregivers. Greater use of technology may help nurses overcome some barriers to working with caregivers. Findings can be used to plan continuing education, develop clinical processes, and identify resources nurses need to address strain and burden among informal caregivers.

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Psychometric evaluation and cultural adaptation of the Spanish version of the "Scale for End-of Life Caregiving Appraisal"

Objective: To translate, culturally adapt, and psychometrically evaluate the Spanish version of the "Scale for End-of Life Caregiving Appraisal" (SEOLCAS).; Method: Observational cross-sectional study. Convenience sample of 201 informal end-of-life caregivers recruited in a southern Spanish hospital. The reliability of the questionnaire was assessed through its internal consistency (Cronbach's α) and temporal stability (Pearson's correlation coefficient [r] between test-retest). The content validity index of the items and the scale was calculated. Criterion validity was explored through performing a linear regression analysis to evaluate the SEOLCAS' predictive validity. Exploratory factor analysis was used to examine its construct validity.; Results: The SEOLCAS' reliability was very high (Cronbach's α = 0.92). Its content validity was excellent (all items' content validity index = 0.8-1; scale's validity index = 0.88). Evidence of the SEOLCAS' criterion validity showed that the participants' scores on the SEOLCAS explained approximately 79.3% of the between-subject variation of their results on the Zarit Burden Interview. Exploratory factor analysis provided evidence of the SEOLCAS' construct validity. This analysis revealed that two factors ("internal contingencies" and "external contingencies") explained 53.77% of the total variance found and reflected the stoic Hispanic attitude toward adversity. Significance of resultsThe Spanish version of the SEOLCAS has shown to be an easily applicable, valid, reliable, and culturally appropriate tool to measure the impact of end-of-life care provision on Hispanic informal caregivers. This tool offers healthcare professionals the opportunity to easily explore Hispanic informal end-of-life caregivers' experiences and discover the type of support they may need (instrumental or emotional) even when there are communicational and organizational constraints.

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Caring for patients with brain tumors compared to patients with non-brain tumors: Experiences and needs of informal caregivers in home care settings

Background/objective: Informal caregivers of patients with advanced cancer experience a challenging time, especially while caring for the patient at home. The aim of this study is to compare experiences, perceived burdens, and needs during home care of informal caregivers of brain tumor patients and informal caregivers of non-brain tumor patients.; Methods: 28 informal caregivers (17 brain tumor group, 11 non-brain tumor group) participated in this study. Semi-structured interviews were conducted to gather information retrospectively. Data was analyzed using principles of thematic analysis method.; Results: The results support existing evidence that the themes assessment of the situation, dealing with the situation, effects of the situation, and support by others are of importance to all informal caregivers. Caregivers in the brain tumor group put more emphasis on information and perception of the situation by others than caregivers in the non-brain tumor group.; Conclusion: The emerging need for information of caregivers and the effects for caregivers of changes in the perception of the situation by others should be addressed to better support informal caregivers of brain tumor patients.

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Efficacy of a telephone outcall program to reduce caregiver burden among caregivers of cancer patients [PROTECT]: a randomised controlled trial

Background: Informal caregivers provide extended support to people with cancer but they receive little support from the health care system to assist them in their caring role. The aim of this single-blind, multi-centre, randomised controlled trial was to test the efficacy of a telephone outcall program to reduce caregiver burden and unmet needs, and improve psychological well-being among cancer caregivers, as well as evaluating the potential impact on patient outcomes.; Methods: Cancer patient/caregiver dyads (N = 216) were randomised to a telephone outcall program (n = 108) or attention control group (n = 108). The primary outcome was self-reported caregiver burden. Secondary endpoints included depressive symptoms, unmet needs, self-esteem, self-empowerment, and health literacy. Data were collected at baseline and at both 1 and 6 months post-intervention. An intention to treat analysis was performed.; Results: The intervention had no effect on the primary outcome (caregiver burden), but reduced the number of caregiver unmet needs (intervention group baseline, mean = 2.66, 95% confidence interval (CI) [1.91-3.54]; intervention group 1 month post intervention, mean = 0.85, 95%CI [0.42-1.44]; control group baseline, mean = 1.30 95%CI [0.80-1.94], control group 1 month post intervention, mean = 1.02 95%CI [0.52-1.69]; p = 0.023). For caregivers at risk for depression, the intervention had a significant effect on caregivers' confidence in having sufficient information to manage their health (p = 0.040). No effects were found for patients' depressive symptoms, unmet needs, self-empowerment, and other health literacy domains.; Conclusions: While caregiver burden was not reduced, the outcall program was effective in reducing unmet needs in caregivers. Provision of cancer information and support via a telephone service may represent a feasible approach to reducing unmet needs among cancer caregiver populations.; Trial Registration: ACTRN12613000731796 ; prospectively registered on 02/07/2013.;

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The role and profile of the informal carer in meeting the needs of people with advancing Parkinson's disease

Background: Many people with Parkinson's disease (PD) (PwP) require care from either informal or formal carers, due to worsening symptoms. Carer strain is a recognised consequence of caring. However there are few data on the role and profile of informal carers and if this impacts on carer strain.; Method: People with moderate to advanced PD, with an informal carer were invited to participate. Data regarding motor and non-motor symptoms of the participant, along with demographics, tasks and duration of caring and health issues of the carer were collected.; Results: One-hundred and fifteen participants and their carer were recruited. Mean carer age was 70.7 years, 66.1% were female caring for a median of 16 hours per day. Over 80% provided help in housework and companionship activities, 63.2% with dressing and 49.1% with feeding. There was a significant relationship between disease stage and level of strain. Participant age, physical and cognitive disability were significantly associated with greater care need. High care need was associated with poor carer quality of life.; Conclusions: The care needs of PwP are considerable. To reduce carer strain and improve quality of life, carers' needs must be considered to enable them to carry on with their vital role.

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Problems experienced by informal caregivers of individuals with heart failure: An integrative review

Objectives: The purpose of this review was to examine and synthesize recent literature regarding problems experienced by informal caregivers when providing care for individuals with heart failure in the home.; Design: Integrative literature review.; Data Sources: A review of current empirical literature was conducted utilizing PubMed, CINAHL, Embase, Sociological Abstracts, Social Sciences Full Text, PsycARTICLES, PsycINFO, Health Source: Nursing/Academic Edition, and Cochrane computerized databases. 19 qualitative, 16 quantitative, and 2 mixed methods studies met the inclusion criteria for review.; Review Methods: Computerized databases were searched for a combination of subject terms (i.e., MeSH) and keywords related to informal caregivers, problems, and heart failure. The title and abstract of identified articles and reference lists were reviewed. Studies were included if they were published in English between January 2000 and December 2016 and examined problems experienced by informal caregivers in providing care for individuals with heart failure in the home. Studies were excluded if not written in English or if elements of caregiving in heart failure were not present in the title, abstract, or text. Unpublished and duplicate empirical literature as well as articles related to specific end-stage heart failure populations also were excluded. Methodology described by Cooper and others for integrative reviews of quantitative and qualitative research was used. Quality appraisal of the included studies was evaluated using the Joanna Briggs Institute critical appraisal tools for cross-sectional quantitative and qualitative studies.; Results: Informal caregivers experienced four key problems when providing care for individuals with heart failure in the home, including performing multifaceted activities and roles that evolve around daily heart failure demands; maintaining caregiver physical, emotional, social, spiritual, and financial well-being; having insufficient caregiver support; and performing caregiving with uncertainty and inadequate knowledge.; Conclusions: Informal caregivers of individuals with heart failure experience complex problems in the home when providing care which impact all aspects of their lives. Incorporating advice from informal caregivers of individuals with heart failure will assist in the development of interventions to reduce negative caregiver outcomes. Given the complex roles in caring for individuals with heart failure, multicomponent interventions are potentially promising in assisting informal caregivers in performing these roles.

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Shared Decision Making About Housing Transitions for Persons With Dementia: A Four-Case Care Network Perspective

Background: Persons with dementia (PWDs) and their caregivers often face difficult housing decisions, that is, decisions about their living arrangements, in which the perspectives of all members of the care network should be involved.; Objective: We performed a qualitative data analysis to assess the extent to which housing decisions for PWDs with their formal and informal caregivers correspond to an interprofessional shared decision making (IP-SDM) approach, and what light this approach sheds on their experiences with decision making.; Research Design and Methods: We used the IP-SDM model to content-code and analyze data from 4 care networks, each consisting of a PWD, 2 informal and 2 formal caregivers.; Results: Decision making in all networks corresponded to most IP-SDM elements, but never included all network members. Decision making was guided by the wishes of the PWD, but their actual involvement decreased over time.; Discussion: Results show that while the IP-SDM model was helpful, the options change with cognitive decline and moving to a nursing home can become inevitable in spite of preferences.; Implications: Timely and honest communication helps to mitigate the distress of deciding against patient preferences, as could advance care planning about future housing transitions.

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Mitigating Burden Associated With Informal Caregiving

Informal caregiving is the most common form of long-term care provided in the United States, and with the projected rapid growth of older adults, informal caregiving will be even more critical in the foreseeable future. In the United States, slightly more than 20% of informal caregivers provide care for more than one care recipient, and 10% provide care for three or more care recipients. Caring for a dependent, older adult patient may have negative effects on physical, psychological, psychosocial, social and financial health of caregivers. Careful assessment of the impact of informal caregiving on the caregiver's functioning is imperative, and will enable a practitioner to not only find ways to help caregivers shoulder the effects of caregiving, but also to measure the effectiveness of interventions that seek to mitigate the effects of caregiving.

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Mitigating Burden Associated With Informal Caregiving

Informal caregiving is the most common form of long-term care provided in the United States, and with the projected rapid growth of older adults, informal caregiving will be even more critical in the foreseeable future. In the United States, slightly more than 20% of informal caregivers provide care for more than one care recipient, and 10% provide care for three or more care recipients. Caring for a dependent, older adult patient may have negative effects on physical, psychological, psychosocial, social and financial health of caregivers. Careful assessment of the impact of informal caregiving on the caregiver's functioning is imperative, and will enable a practitioner to not only find ways to help caregivers shoulder the effects of caregiving, but also to measure the effectiveness of interventions that seek to mitigate the effects of caregiving.

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Assessing carer needs in chronic obstructive pulmonary disease

Informal carers play a key role in supporting patients with chronic obstructive pulmonary disease (COPD), particularly when disease is advanced. They also enable delivery of healthcare professional advice. There is a well-established impact of the caring role on carers in both the generic and COPD-specific literature. The needs of carers of patients with COPD are both generic to the caring role and disease specific. Healthcare professionals and health systems supporting patients with COPD need to actively identify and support carers. Carer assessment enables unmet needs to be identified and appropriately addressed. Assessments should consider carers' support needs, their caring capacity and practices, and carers own clinical needs. This narrative review outlines considerations for the assessment process including what should be assessed, who should conduct assessment and what should happen as a result of assessment.

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Stability of home-based care arrangements for people living with dementia: protocol of a meta-study on mixed research

Introduction: Worldwide, most people with dementia live at home and are cared for by informal carers. During the dementia care trajectory, creating and maintaining a stable care situation is a guiding principle of informal carers and a desirable outcome of contemporary healthcare policies. However, though there is an extensive body of research focusing on the course of dementia care trajectories, it remains unclear how stability of home-based care arrangements is constituted and what are the essential factors that influence this stability. This paper outlines a protocol of a systematic review that aims to address these gaps in knowledge.; Methods and Analysis: To theorise the complex phenomenon of stability of home-based care arrangements for people with dementia, we will conduct a meta-study. Meta-studies include three analytical components (meta-data analysis, meta-method and meta-theory) that are combined and finally culminate in an integrative knowledge synthesis. Originally, meta-study was designed to include qualitative studies only. To capture relevant contributions to our target phenomenon from all types of evidence, we will extend the original methodology and apply it to studies with qualitative, quantitative and mixed-methods designs and to (systematic) reviews. Eligible studies will be identified by systematic database searches (PubMed, CINAHL and PsycINFO), backward/forward citation tracking, snowballing and theoretical sampling. All identified studies will be screened against predefined inclusion criteria. The main analytical approach for all analyses is thematic synthesis. The meta-study will generate a more comprehensive understanding of dementia care trajectories and will be used to identify research gaps, develop future research questions and define relevant outcomes.; Dissemination: The findings of the meta-study will be published in a series of articles in peer-reviewed scientific journals and will be presented at national and international scientific conferences.; Prospero Registration Number: CRD42016041727.

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Support needs of caregivers of patients with amyotrophic lateral sclerosis: A qualitative study

Objective: The aim of this study was to explore the support needs of Dutch informal caregivers of patients with amyotrophic lateral sclerosis (ALS).; Method: Individual semi-structured interviews were conducted with 21 caregivers of ALS patients. Audio-taped interviews were transcribed and data were analyzed thematically. Result A total of four global support needs emerged: "more personal time", "assistance in applying for resources", "counseling", and "peer contact". Despite their needs, caregivers are reluctant to apply for and accept support. They saw their own needs as secondary to the needs of the patients. Significance of results ALS seems to lead to an intensive caregiving situation with multiple needs emerging in a short period. This study offers targets for the development of supportive interventions. A proactive approach seems essential, acknowledging the importance of the role of the caregivers in the care process at an early stage, informing them about the risk of burden, monitoring their wellbeing, and repeatedly offering support opportunities. Using e-health may help tailor interventions to the caregivers' support needs.

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What happens for informal caregivers during transition to increased levels of care for the person with dementia? A systematic review protocol

Background: Dementia is a globally prevalent disease that requires ongoing and increasing levels of care, often provided in the first instance by informal caregivers. Supporting transitions in informal caregiving in dementia is a pertinent issue for caregivers, care providers and governments. There is no existing systematic review that seeks to identify and map the body of literature regarding the review question: 'What happens for informal caregivers during transition to increased levels of care for the person with dementia?'; Methods/design: ASSIA, CINAHL+, MEDLINE, PsycINFO, SCIE, Social Service Abstracts and Web of Science will be systematically searched. Specialist dementia research libraries will be contacted. Reviews identified as relevant during the search process, their reference lists, and reference lists of accepted papers will be hand-searched. Qualitative, quantitative and mixed methods studies that seek to represent the experiences of, or examine the impact upon, informal caregivers during transition to increased formal care for the person with dementia will be eligible for inclusion. Synthesis will be segregated into qualitative and quantitative papers. Findings will be summarised, and the review will be prepared for publication.; Discussion: The review will seek to identify potentially vulnerable groups in need of support and as such, inform the practice of those offering support. It will also inform future research by highlighting areas in which current literature is insubstantial.; Systematic Review Registration: PROSPERO CRD42017067248.;

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What are the caregivers' needs on dementia care? An integrated qualitative and quantitative assessment

Dementia is one of the main causes of disability later in life. Interventions in support of patients with dementia aim at granting the highest level of independence in activities of daily living and at delivering the required facilities; formal and informal caregivers represent the interface between patients and health services. The aims of our study were to assess caregivers' perceived needs and to relate them to their own socio-cultural features and to patients' clinical characteristics. During three consecutive months, 50 caregivers of patients with dementia were interviewed about their needs in the assistance of subjects with dementia by means of three structured questionnaires (Caregiver Needs Assessment [CNA], Zarit Burden Inventory [ZBI], Neuropsychiatric Inventory-Questionnaire [NPI-Q]) and of two open-ended questions. Higher scores of CNA (suggestive of more needs) were associated with a major burden in caregiving and were related to a more severe behavioral and psychological profile of patients with dementia. ZBI was highly correlated with NPI distress score. Among caregivers, the children of patients reported more needs, particularly about information on disease and how to cope with it. CNA emerged as a complete and reliable instrument, with need for safety being the only item missing from the questionnaire and identified by means of the open-ended questions. Our results showed how the use of simple and brief instruments can increase the communication between health operators and caregivers and could thus improve the quality of formal and informal assistance.

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Access to community care for people with dementia and their informal carers : Case vignettes for a European comparison of structures and common pathways to formal care

Background: People with dementia and their informal carers often do not receive appropriate professional support or it is not received at the right time.; Objectives: Description and comparison of common pathways to formal community dementia care in eight European countries as a part of the transnational Actifcare project.; Materials and Methods: The German team was responsible for creating an individual case scenario as a starting point. The research teams in Ireland, Italy, the Netherlands, Norway, Portugal, Sweden, and the United Kingdom were then asked to describe a common pathway to formal dementia care by writing their own vignette using the provided individual case scenario.; Results: A transnational qualitative content analysis was used to identify the following categories as being the most important: involved professionals, dementia-specific and team-based approaches, proactive roles, and financial aspects. General practitioners (GPs) are described as being the most important profession supporting the access to formal care in all the involved countries. In some countries other professionals take over responsibility for the access procedure. Dementia-specific approaches are rarely part of standard care; team-based approaches have differing significances in each of the countries. Informal carers are mainly proactive in seeking formal care. The Nordic countries demonstrate how financial support enhances access to the professional system.; Conclusion: Enhanced cooperation between GPs and other professions might optimize access to formal dementia care. Team-based approaches focusing on dementia care should be developed further. Informal carers should be supported and relieved in their role. Financial barriers remain which should be further investigated and reduced.

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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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Informal Caregiving and the Politics of Policy Drift in the United States

Informal caregivers play an increasingly important role in caring for aging Americans. Yet existing social policies that could support informal caregiving have experienced "policy drift," a failure to adapt to social risks that develop after policies are initially enacted. This article examines policy makers' success at updating seven major policies to address caregiver needs. It draws on an original data set of legislation in this area introduced between 1991 and 2006 (n = 96). Findings indicate that drift is more likely when policy updates are costly, lack support from members of majority parties in the House and Senate, and fail to generate bipartisan support.

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Dementia informal caregiver obtaining and engaging in food-related information and support services

As dementia progresses, caregivers increasingly have to manage the decline of food-related abilities with little outside information or input from support services The provision of food coping skills and knowledge can lessen the burden on caregivers. However, there is little research on caregivers' perspectives on food-related services. This paper reports on a qualitative study to investigate informal caregivers' experiences of, and views on, food-related information and support services in dementia. Twenty informal caregivers were interviewed and the transcripts from these interviews were analysed using both deductive and inductive thematic analysis. Four categories emerged. 'Direct food-related Information', covers written material, training, 'Direct food-related informal support': lunch clubs, 'Indirect non-food related formal support services' covers respite services and domestic help at home. Finally 'no services required' covers those who did not feel they needed any form of intervention due to confidence in managing food-related processes or having no change in dementia progression and food responsibility. Most caregivers will need different levels of information and support at different stages of dementia. It is necessary therefore to undertake ongoing individual assessment of food information and support needs.

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Burnout in early course psychosis caregivers: the role of illness beliefs and coping styles

Aims In occupational settings, burnout is a common response to chronic exposure stressors and has been frequently documented in formal caregivers (i.e. paid psychiatric staff). However, the literature is limited on reports of burnout among informal caregivers and particularly within early psychosis groups. The current study sought to investigate reports of burnout in carers of young adults treated within a specialist early psychosis service and links with key appraisals reported about the illness and coping. Methods Seventy-two carers completed the Maslach Burnout Inventory along with self-report measures of coping styles and illness beliefs. Results Seventy-eight per cent of carers reported high burnout in at least one of the three key burnout markers (i.e. emotional exhaustion, depersonalization or low personal accomplishment). Seven per cent of carers met full criteria for high burnout across all the three domains. A carer's belief about the negative consequences of the illness for themselves was a significant predictor of emotional exhaustion and depersonalization. Low personal accomplishment was linked to a carer's less optimistic beliefs about the illness timeline and fewer reports of adaptive coping. Conclusions The results provide preliminary support for the importance of asking carers in the early illness phase about their experiences of caregiving. Targeted assessment may serve as a helpful tool to identify and intervene with carers in need of additional support with stress management, use of adaptive coping strategies, and balanced recovery focused information about psychosis.

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The impact of older person's frailty on the care-related quality of life of their informal caregiver over time: results from the TOPICS-MDS project

Purpose: To examine the impact of changes in an older person's frailty on the care-related quality of life of their informal caregiver.; Methods: Five research projects in the TOPICS-MDS database with data of both older person and informal caregiver at baseline and after 12 months follow-up were selected. Frailty was measured in five health domains (functional limitations, psychological well-being, social functioning, health-related quality of life, self-rated health). Care-related quality of life was measured with the Care-Related Quality of Life instrument (CarerQoL-7D), containing two positive (fulfilment, perceived support) and five negative dimensions (relational problems, mental health problems, physical health problems, financial problems, problems combining informal care with daily activities).; Results: 660 older person/caregiver couples were included. Older persons were on average 79 (SD 6.9) years of age, and 61% was female. Caregivers were on average 65 (SD 12.6) years of age, and 68% was female. Results of the multivariable linear and logistic regression analyses showed that an increase in older person's frailty over time was related to a lower total care-related quality of life of the caregiver, and to more mental and physical health problems, and problems with combining informal care with daily activities at follow-up. A change in the older person's psychological well-being was most important for the caregiver's care-related quality of life, compared to the other health domains.; Conclusions: Health professionals observing decreasing psychological well-being of an older person and increasing hours of informal care provision should be aware of the considerable problems this may bring to their informal caregiver, and should tailor interventions to support informal caregivers according to their specific needs and problems.

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How to explore the needs of informal caregivers of individuals with cognitive impairment in Alzheimer's disease or related diseases? A systematic review of quantitative and qualitative studies

Background: This study aims to review the methodologies used to identify the needs, the existing needs assessment instruments and the main topics of needs explored among caregivers of patients with mild cognitive impairment to dementia.; Methods: MEDLINE, PsycINFO, The Cochrane Library and Web of science were searched from January 1980 to January 2017. Research studies in English or French were eligible for inclusion if they fulfilled the following criteria: quantitative, qualitative and mixed method studies that used instrument, focus group or semi-structured interviews to assess the informal caregiver's needs in terms of information, coping skills, support and service.; Results: Seventy studies (n = 39 quantitative studies, n = 25 qualitative studies and n = 6 mixed method studies) met the inclusion criteria and were included. Thirty-six quantitative instruments were identified but only one has been validated for the needs assessment of dementia caregivers: the Carer's Needs Assessment for Dementia (CNA-D). The main areas of needs explored in these instruments were: information, psychosocial, social, psychoeducational and other needs.; Conclusions: No instrument has been developed and validated to assess the needs of informal caregivers of patients with cognitive impairment, whatever the stage and the etiology of the disease. As the perceived needs of caregivers may evolve with the progression of the disease and the dementia transition, their needs should be regularly assessed.

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What are the essential features of resilience for informal caregivers of people living with dementia? A Delphi consensus examination

Objectives: Few studies have examined what might enable or prevent resilience in carers of people with dementia. Consequently, there are limited insights as to how it should be understood, defined and measured. This creates challenges for research, and also practice in terms of how it might best be promoted. This study aimed to address these limitations and add new insights, identifying the essential features of resilience in dementia caregiving. Methods: A Delphi consensus study was conducted, consulting a multi-disciplinary panel of informal caregivers and experts with relevant professional expertise. Panellists rated the relevance of various statements addressing essential components of resilience; ‘adversity’ and ‘successful caregiving’ on a 5-point Likert scale. Based on the median and Inter Quartile Range, the most relevant statements with moderate consensus were proposed in Round 2 in which panellists selected up to five statements in order of importance. Results: Moderate consensus was reached for all statements after two rounds. Patients’ behavioural problems and feeling competent as a caregiver were selected by both caregivers and professionals as essential resilience features. Caregivers also emphasized the importance of social support, the quality of the relationship with their relative and enjoying spending time together. Professionals considered coping skills, experiencing positive aspects of caregiving, and a good quality of life of caregivers most relevant. Conclusion: The essential elements of resilience selected from multiple stakeholder perspectives can be used to select appropriate outcomes for intervention studies and give guidance to policy to support caregivers more effectively and better tailored to their needs. 

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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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Functional Limitations Experienced by Older Adults with Complex Care Needs and Its Impact on Access to Community Based Health and Social Care

Introduction: Multimorbidity is often combined with functional limitations among older adults. It is therefore important to ensure the built and social environment encourages older adults to safely age while maintaining independence. Previous findings have focused on the impact of the built environment as a barrier to an active lifestyle, but not specific to accessing community-based health and social care (CHSC). We propose to investigate the impact of patient and caregiver limitations on accessing care, including the impact of the built environment. Methods: Secondary thematic coding analysis was undertaken with 53 patient and 38 informal caregiver interviews from communities in Canada and New Zealand. Reported findings are from a broader research program titled, Implementing integrated Care for Older Adults with Complex Health needs (iCOACH). Older complex seniors were recruited for participation from a community primary healthcare team if they were greater than 50 years of age, and managing ongoing chronic conditions. Caregivers were unpaid informal carers of older adults. A specific thematic code about unmet need was extensively reviewed for examples related to the built environment and access to care. Results: Functional limitations hindered self-management at home as well as accessing CHSC. Attributes of the physical environment at home impacted the use of assistive devices, and impaired the ability to leave the home. Physical barriers within the social environment included the inability to use public transportation, access community programs, and conduct daily living tasks. Consequences from not being able to access supports included greater financial strain, social isolation, poor safety at home, lack of independence, and greater caregiver strain. Older adults appeared to be less impacted by access barriers when living in supportive housing settings, where on-site staff were available to provide direct support, or initiate referrals for additional services. Discussions: Experiences of older adults and informal caregivers highlighted access to care issues specific to the immediate and external physical environment, and examples of when support was efficiently provided. When considering how to best deliver services to people with complex care needs and their caregivers, it is important to consider how those services can be accessed. Conclusions: When services cannot be easily accessed, patients and caregivers may make critical trade-offs. To maintain independence and safety, it is important to design services which consider the adaptations and supports that are required to support older adults both at home, as well as the environment they have to navigate to access care. 

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Carers and breathlessness

Purpose Of Review: Informal carers play a key role in supporting patients living with breathlessness in advanced disease, but with considerable impacts on their own well being. The purpose was to review recent advances in our understanding of the caring role in refractory breathlessness, its impacts on carers, and interventions to support them.; Recent Findings: A systematic literature search resulted in 28 included articles that could be mapped to four broad areas of carer enquiry: the carer role (n = 6), role impact (n = 7), carer support (n = 11) and carer views (n = 4). Search terms focused on breathlessness, but few of the included articles were exclusively on breathlessness: most were disease-related, predominantly chronic obstructive pulmonary disease (COPD). There were a range of methodologies, including four systematic reviews; UK studies were most common.; Summary: Carers of patients with breathlessness take on a role characterized by uncertainty, largely unsupported by healthcare professionals (HCPs). HCP acknowledgement of these carers, their contribution and the impact of the caring role, is lacking. The patient-carer dyad should be considered the unit of care. Carer intervention should be individualized, supporting carers as clients and coworkers. There was a dearth of studies recruiting via primary care, focusing on conditions other than COPD and longitudinal work.

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Can domestic helpers moderate distress of offspring caregivers of cognitively impaired older adults?

Objective: This study examined the moderating effect of domestic helpers on distress of offspring caring for parents with cognitive impairments and with or without behavioural problems.; Method: This secondary analysis of data involved 5086 Hong Kong Chinese adults aged 60 or older applying for public long-term care services from 2010 to 2012. All variables were measured using the mandatory Hong Kong version of the Minimum Data Set-Home Care 2.0.; Results: Regarding taking care of parents with cognitive impairments, 10.7% of offspring primary caregivers were aided by domestic helpers, 55.54% reported distress, and 75.70% lived with their parents. Assistance from domestic helpers reduced offspring caregiver distress if the offspring provided psychological support to parents (ratio of OR = 0.655, p < .05) and were not living with parents (ratio of OR = 1.183, p < .01).; Conclusion: These findings might suggest: a) the positive effects of audience on psychological responses to stress; b) caregiving is usually less stressful for informal caregivers not residing with care recipients. Conversely, having a domestic helper could add to caregiving distress if offspring caregivers live with their parents, most likely because offspring may witness difficulties that domestic helpers face in providing dementia care.

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Strapped for Time or Stressed Out? Predictors of Work Interruption and Unmet Need for Workplace Support Among Informal Elder Caregivers

Objective: We evaluate whether strong associations between unmet need and work interruption observed among informal elder caregivers are explained by caregiver personal characteristics, caregiving situations, or diminished caregiver well-being.; Method: We analyze a proprietary survey of informal elder caregivers conducted by a single large U.S. employer ( N = 642 caregivers).; Results: Unmet need was about twice as common among those experiencing mild (29.79%) or severe interruption (35.00%) relative to those who did not interrupt work (16.87%). Although caregiver characteristics and aspects of caregiving situation show links to either unmet need or work interruption specifically, the association between unmet need and work interruption was not explained by these factors, or by caregiver well-being.; Discussion: Needs-related work interruptions may arise by other workplace processes, such as organizational culture, that should be measured and tested explicitly by future research.

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The effects of informal carers' characteristics on their information needs: The information needs state approach

There has been little research that provides a comprehensive account of the nature and aspects of information needs of informal carers. The authors have previously developed and validated a framework that accounts for major underlying states of information need. This paper aims to apply this framework to explore whether there are common demographic and socioeconomic characteristics that affect the information needs states of carers. A questionnaire about the information needs states was completed by 198 carers above 18 years old. We use statistical methods to look for similarities and differences in respondents' information needs states, in terms of the demographic and socioeconomic variables. At least one information needs state varies among carers, in terms of seven demographic and socioeconomic variables: the age of the patient(s) that they are caring for; the condition(s) of the patient(s) that they are caring for; the number of patients that they are caring for; their length of time as a carer; their gender; the country that they live in; and the population of the area that they live in. The findings demonstrate the utility of the information needs state framework. We outline some practical implications of the framework.

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Global state of care

A landmark report on global carer priorities, featuring policies and programs that safeguard carers’ health and well-being, minimize financial stress, facilitate access to information, create flexible workplaces and support evidence-informed decision-making.

A profile of nine countries including the exciting developments and innovative practices addressing six fundamental issues:
  • Legislation

  • Financial support

  • Working arrangments

  • Pension credits

  • Respite care

  • Information & training

Original source (some source materials require subscription or permission to access)

Meeting the Informational, Educational, and Psychosocial Support Needs of Persons Living With Dementia and Their Family Caregivers

Background and Objectives: Meeting the unique and changing needs of individuals living with Alzheimer's disease and their family caregivers can be very challenging given the dynamic and often unpredictable nature of the disease. Effective programs are available to help families manage the challenges they will face. Research Design and Methods: This article first describes the educational, information, and support needs of individuals living dementia and their family caregivers across all stages of Alzheimer's. Next, we describe the variety of services and program models targeted to the needs of individuals living with Alzheimer's disease or other types of dementia and their families. Results: These programs can help ensure that person- and family-centered care is maintained from time of first symptoms through end-of-life. Discussion and Implications: We end with our recommendations for maintaining person- and family-centered care through the provision of targeted information, education, and support to individuals and their families. 

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Musculoskeletal Symptoms among Family Caregivers of Community-Dwelling Stroke Survivors in Nigeria

Introduction: Caring for stroke survivors may be burdensome with adverse consequences on caregivers' physical health. This study examined the prevalence of musculoskeletal symptoms and associated factors among family caregivers of stroke survivors in Nigeria. Methods: A hospital-based cross-sectional study involving 90 stroke caregiver and stroke survivor dyads was conducted. Data on the participants' demographics and post-stroke duration were obtained. Seven-day prevalence of musculoskeletal symptoms among the caregivers and level of stroke survivors' disability were respectively assessed using the Nordic Musculoskeletal Questionnaire and Modified Rankin Scale. Prevalence of musculoskeletal symptoms was presented as percentages while participants' characteristics associated with prevalence of musculoskeletal symptoms were examined using inferential statistics. Results: Mean (SD) age of caregivers and stroke survivors was 33.2 (10.7) years and 58.9 (9.7) years respectively. Majority of the caregivers were females (61.1%), and children of the stroke survivors (58.9%). Prevalence of musculoskeletal symptoms was 82.2%. The low back was the most affected body region (72.2%) followed by the upper back (40%) while musculoskeletal symptoms in the wrist was least prevalent (3.3%). Female caregivers, caregivers of female stroke survivors and spousal caregivers had significantly higher prevalence of musculoskeletal symptoms compared to other categories of caregivers. Only 5 (5.6%) caregivers had however received any training on safe care giving methods while only 21 (28.4%) caregivers with musculoskeletal symptoms had received treatment. Conclusion: With the high prevalence of musculoskeletal symptoms among family caregivers of stroke survivors, effective preventive strategies including training and education as well as timely access to treatment would be required. 

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Systemic-Oriented Psychological Counselling for Caregivers of People with Severe Brain Injury: Reflections on a Clinical Case

Severe brain injuries can have dramatic consequences on family life, often changing rules and routines and fostering intense and prolonged caregiving duties. People affected by the injuries have to face relevant restrictions in their activities and a loss of independence. Thus, primary caregivers are often involved in their assistance, which can entail the help for self-care, movements and many activities of daily living. Furthermore, cognitive and behavioural symptoms can complicate communication, disrupt previous relationships and put an additional strain on all family members. Indeed, caregiving relationships take place in wider familial and societal contexts and are obviously influenced by previous characteristic of such relationships, as they were before the onset of the pathological condition. Therefore, a thorough examination of typical emotions, feelings and thoughts that can emerge during caregiving must be paralleled by an ecological and developmental perspective, in order to appraise the complexity of these cases and provide effective interventions. The present work aims to address such topics taking inspiration from a clinical case. 

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Role change as breadwinner in cancer caregiving

Introduction:  Indian families are known for adopting the role of caregiver naturally when someone in the family falls ill to cancer. Although there were strong family structure and system existed here, now the changing family pattern and structure are challenging the role of cancer caregiving as well. Objective:  This study analyses the life situation of caregivers of cancer survivors during the course of treatment and attempts to explore the areas of interventions for caregivers themselves. Methods: A descriptive research design was adopted for the study. A sample of 40 respondents was chosen for the study through purposive sampling technique. Results: Majority of the caregivers were females (75%) and fell into the age group of 35 to 45 years (65%). The education among the caregivers was varying between illiteracy to postgraduation. Majority of 95% of them adapted the dual role voluntarily and 85% of them felt that they were finding it very difficult to cope with the dual responsibility. About 60% of them felt that they would fail in their roles and were not satisfied with their performances dually. Conclusion: Adaptation to a dual role involves time factor and as part of care to the caregiver, a guided interaction and orientation towards managing these roles would help them better ways to adapt. Given the scarcity of support system on Indian settings, the caregivers who do dual role have huge responsibility and challenges to deliver quality caregiving and fulfill their other roles as well. It is the duty of the complete health care system to seriously take this into consideration and to act on it. 

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Coping with patients suffering from overactive bladder: experiences of family caregivers in Hong Kong

This article examines the experiences of family caregivers working with patients affected by overactive bladder ( OAB) in Hong Kong. Chronic diseases create physical and emotional burdens not only for patients but also for family caregivers, who often experience physical and emotional burnout and social impairment. Extensive literature has pertained to caregiver experiences in western and non-western settings; however, few studies have addressed the livelihoods and experiences of family caregivers of patients with OAB in ethnic Chinese communities. Because of the increasing prevalence of OAB worldwide, this study investigated the experiences of such caregivers in Hong Kong, examining their emotional and social needs. A qualitative research design with individual semistructured interviews was adopted, and snowball sampling was used to recruit 35 family caregivers who were referred by patients with OAB. The participants were interviewed individually from May to August 2013. A phenomenological approach was adopted in the data analysis. The data revealed that all participants had unpleasant experiences in caring for family members with OAB. A sense of powerlessness, helplessness, confusion and guilt, as well as grievances and social withdrawal, was prevalent, causing great physical and emotional suffering and subsequent physical and emotional burnout. These negative experiences were often caused by confusion regarding caretaking duties. The negative emotions of the participants and their family members also caused a lack of communication and mutual understanding about the disease, causing care-giving to be even more confusing and difficult. Furthermore, because of traditional Chinese cultural values and gender expectations, male participants experienced the triple burden of employment, domestic duties and care-giving. More holistic social and healthcare support services should be provided for care-giving family members of patients with OAB patients, empowering such caregivers to attend to family members and care for their own emotional well-being.

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Findings from an online survey of family carer experience of the management of challenging behaviour in people with intellectual disabilities, with a focus on the use of psychotropic medication

Accessible summary: Family members often support people with intellectual disabilities who display challenging behaviour. Family carers should be listened to and included in important decisions. We asked family carers how professional services had helped their relative with challenging behaviour. Family carers said that the care of people with intellectual disabilities who display challenging behaviour can be improved. Family carers sometimes felt left out of decisions and said that they needed more information. Listening to parent carers' experiences can help to improve the services that are provided to people with intellectual disabilities and their families.

Abstract: Background: There is relatively little published data that report the experiences and views of family carers of people with intellectual disabilities who display challenging behaviour who are prescribed psychotropic medication. Materials and methods: An online structured questionnaire was created by the Challenging Behaviour Foundation, a UK charity, and family carers of people with intellectual disability. Questions concerned the management of challenging behaviour and asked family carers about their experiences and views on the use of psychotropic medication. Responses were gathered between August and October 2016. Results are summarised using descriptive and inferential statistics and descriptive analysis of free‐text comments. Findings: Ninety‐nine family carers completed the survey. Family carers reported gaps in the holistic and proactive management of challenging behaviour. Whilst some felt involved in decisions around psychotropic medication prescribing, others described feeling marginalised and lacking information and influence. The decision to prescribe psychotropic medication evoked complex emotions in family carers and medication use was associated with mixed outcomes in those prescribed. Family carers identified areas of good practice and those areas where they believe improvements are needed. Conclusions: Psychotropic medication should be only one option in a multimodal approach to challenging behaviour, but this may not always be reflected in current practice. Greater effort needs to be made to ensure that services are equipped to provide optimum care and to embed shared decision‐making into routine practice. 

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Changing Structures and Processes to Support Family Caregivers of Seriously Ill Patients

Background: Although family caregivers provide a significant portion of health and support services to adults with serious illness, they are often marginalized by existing healthcare systems and procedures. Objective: We examine the role of caregivers in existing systems of care, identify needed changes in structures and processes, and describe how these changes might be monitored and assessed and who should be accountable for implementing them. Design: Based on a broad assessment of the caregiving literature, the recent National Academy of Sciences Report on family caregiving, and descriptive data from two national surveys, we describe structural and process barriers that limit caregivers' ability to provide effective care. Subjects: To describe the unique challenges and impacts of caring for seriously ill patients, we report data from a nationally representative sample of older adults and their caregivers (National Health and Aging Trends Study [NHATS]; National Study of Caregiving [NSOC]) to identify the prevalence and impact on family caregivers of seriously ill patients who have high needs for support and are high cost to the healthcare system. Measurements: Standardized measures of patient status and caregiver roles and impacts are used. Results: Multiple structural and process barriers limit the ability of caregivers to provide effective care. These issues are exacerbated for the more than 13 million caregivers who provide care and support to 9 million seriously ill older adults. Conclusions: Fundamental changes are needed in the way we identify, assess, and support caregivers. Educational and workforce development reforms are needed to enhance the competencies of healthcare and long-term service providers to effectively engage caregivers. 

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Trapped like a butterfly in a spider's web: Experiences of female spousal caregivers in the care of husbands with severe mental illness

Aims and objectives: To explore the experiences of female spousal caregivers in the care of husbands with severe mental illness. Background: Family involvement in the care of patients with chronic illness is essential to provide a backbone of support for them. However, little is known about how female spousal caregivers are confronted with challenges while taking care of their husbands with severe mental illness. Design: An exploratory qualitative study. Methods: Fourteen female spousal caregivers of people with severe mental illness (defined here as schizophrenia, schizoaffective disorders and bipolar affective disorders) were recruited using purposive sampling and were interviewed using a semistructured in‐depth interview method. Data were analysed by conventional content analysis until data saturation was achieved. Results: Care of a husband with severe mental illness had a disruptive influence on the emotional relationships of the family and resulted in emotional detachment over time. Despite the caregivers’ struggle to protect their families, the lack of supportive resources caused emotional exhaustion. Caregiving tasks interfering with their many other responsibilities, along with being a reference for family matters, led to loss of self. Consequently, they experienced psychological distress because of the transition to a caregiver role without any supportive resources. Conclusion: Constant caring, without supportive resources, forced them to do various roles and manage other issues within the family. Being unprepared for a caregiving role led to the psychological distress of female spousal caregivers. Therefore, adequate information, education and supportive resources must be provided for spouses to facilitate their transition to caregiving roles. Relevance to clinical practice: It is necessary to pay close attention to the spousal caregivers’ own mental health problems while they care for their mentally ill husbands. Mental health professionals should adopt a new approach to the prioritisation and planning of policies that support both family caregivers and patients. 

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End-of-life care: A qualitative study comparing the views of people with dementia and family carers

Background: In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been reported, little is known about the perspectives of people with dementia and family carers. Aim: To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care. Design: Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed. Setting/participants: Participants comprised people with early stage dementia, living at home in the north-east of England (n = 11); and current and bereaved carers (n = 25) from six services providing end-of-life care in England. Findings: Seven areas were identified as important to end-of-life care for people with dementia and/or family carers. People with dementia and carers expressed the need for receiving care in place, ensuring comfort and a skilled care team. However, they disagreed about the importance of planning for the future and the role of families in organising care and future decision-making. Conclusion: Further comparison of our findings with expert consensus views highlighted key areas of divergence and agreement. Discordant views concerning perceptions of dementia as a palliative condition, responsibility for future decision-making and the practical co-ordination of end-of-life care may undermine the provision of optimal palliative care. Professionals must explore and recognise the individual perspectives of people with dementia and family carers. 

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The association between family caregivers' involvement in managing older adults' medications and caregivers' information-seeking behavior

Objectives: 1) To explore the association between family caregivers' involvement in managing care recipients' medications and their information-seeking behavior related to caregiving; and 2) to examine the sources used by caregivers when seeking information.; Methods: A retrospective analysis of cross-sectional data from 2 national studies, the 2011 National Health and Aging Trends Study (NHATS) and its supplement, the National Study of Caregiving (NSOC), was conducted. A nationally representative sample of community-dwelling adults (≥65 years of age) completed NHATS interviews, and a sample of their family caregivers participated in NSOC. Caregiver involvement in medication management was assessed with the use of 2 items asking caregivers if they helped keep track of care recipients' medications or helped with injecting medications. Information seeking was assessed with the use of an item asking caregivers if they ever looked for caregiving-related information.; Results: Out of 1367 caregivers interviewed, 54% reported helping to keep track of care recipients' medications and 8.7% assisting with injecting medications. Approximately 10.2% (n = 149) of caregivers reported seeking information to help them care for their care recipients. Caregivers sought information primarily on their own either through online resources or asking friends or relatives (73.3%). Sixty-four percent also sought information from medical providers or social workers. Adult children of caregivers were more likely to seek information for their older adult parents, based on bivariate analysis (P <0.01). In multivariable-adjusted models, caregivers who helped to keep track of medications had 2.30 (95% confidence interval [CI] 1.18 to 4.51) times higher odds of seeking information to help them to provide care for their care recipients. Caregivers helping with injecting medications were less likely to seek information (odds ratio 0.32, 95% CI 0.14 to 0.76).; Conclusion: Specific caregiver responsibilities, such as assisting with medication management activities, are associated with caregivers' information-seeking behavior related to care recipients' health. Health care providers, including pharmacists, can play an important role in helping caregivers to identify proper resources for information and in educating them about medication management.; Copyright © 2017 American Pharmacists Association®. Published by Elsevier Inc. All rights reserved.

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Exploration of Factors Related to Depressive Symptomatology in Family Members of Military Veterans With Traumatic Brain Injury

Traumatic brain injury (TBI) is a family affair, affecting those with the injury and their families. Psychological distress, often measured as depression or depressive symptoms, is highly prevalent among family members. Predictors of depression in family members of civilians with TBI have been examined, but predictors of depression in family members of military veterans have received very little research attention and are poorly understood. To address the knowledge gap, this study explored factors related to depressive symptoms in family members of veterans in the United States, using an ecological framework. Baseline data from 83 family members were used. Family members with higher caregiver burden, presence of a veteran with posttraumatic stress disorder (PTSD), and greater financial difficulty experienced significantly more depressive symptoms. Findings suggest that efforts to support family members and decrease their depression should aim to reduce caregiver burden and financial difficulty, and help family members cope with veteran PTSD and TBI. Family-focused interventions are needed. 

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Crisis resolution and home treatment: stakeholders' views on critical ingredients and implementation in England

Background: Crisis resolution teams (CRTs) can provide effective home-based treatment for acute mental health crises, although critical ingredients of the model have not been clearly identified, and implementation has been inconsistent. In order to inform development of a more highly specified CRT model that meets service users' needs, this study used qualitative methods to investigate stakeholders' experiences and views of CRTs, and what is important in good quality home-based crisis care. Method: Semi-structured interviews and focus groups were conducted with service users (n = 41), carers (n = 20) and practitioners (CRT staff, managers and referrers; n = 147, 26 focus groups, 9 interviews) in 10 mental health catchment areas in England, and with international CRT developers (n = 11). Data were analysed using thematic analysis. Results: Three domains salient to views about optimal care were identified. 1. The organisation of CRT care: Providing a rapid initial responses, and frequent home visits from the same staff were seen as central to good care, particularly by service users and carers. Being accessible, reliable, and having some flexibility were also valued. Negative experiences of some referral pathways, and particularly lack of staff continuity were identified as problematic. 2. The content of CRT work: Emotional support was at the centre of service users' experiences. All stakeholder groups thought CRTs should involve the whole family, and offer a range of interventions. However, carers often feel excluded, and medication is often prioritised over other forms of support. 3. The role of CRTs within the care system: Gate-keeping admissions is seen as a key role for CRTs within the acute care system. Service users and carers report that recovery is quicker compared to in-patient care. Lack of knowledge and misunderstandings about CRTs among referrers are common. Overall, levels of stakeholder agreement about the critical ingredients of good crisis care were high, although aspects of this were not always seen as achievable. Conclusions: Stakeholders' views about optimal CRT care suggest that staff continuity, carer involvement, and emotional and practical support should be prioritised in service improvements and more clearly specified CRT models. 

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"I didn't want to be in charge and yet I was": Bereaved caregivers' accounts of providing home care for family members with advanced cancer

Objective: To describe bereaved caregivers' experiences of providing care at home for patients with advanced cancer, while interacting with home care services. Methods: Caregivers of patients who had completed a 4-month randomized controlled trial of early palliative care versus standard oncology care were recruited 6 months to 5 years after the patient's death. All patients except one (control) had eventually received palliative care. In semi-structured interviews, participants were asked about their experiences of caregiving. Grounded theory guided all aspects of the study. Results: Sixty-one bereaved caregivers (30 intervention, 31 control) were interviewed, including spouses (33), adult children (19), and other family (9). There were no differences in themes between control and intervention groups. The core category of Taking charge encompassed caregivers' assumption of active roles in care, often in the face of inadequate formal support. There were 4 interrelated subcategories: (1) Navigating the system-navigating the complexities of the home care system to access resources and supports; (2) Engaging with professional caregivers-interacting with visiting personnel to advocate for consistency and quality of care; (3) Preparing for death-seeking out information about what to expect at the end of life; and (4) Managing after death-managing multiple administrative responsibilities in the emotionally charged period following death. Conclusions: Caregivers were often thrust into assuming control in order to compensate for deficiencies in formal palliative home care services. Policies, quality indicators, and guidelines are needed to ensure the provision of comprehensive, interdisciplinary home palliative care. 

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Scaffolding and working together: a qualitative exploration of strategies for everyday life with dementia

Background: living with dementia has been described as a process of continual change and adjustment, with people with dementia and their families adopting informal strategies to help manage everyday life. As dementia progresses, families increasingly rely on help from the wider community and formal support. Methods: this article reports on a secondary analysis of qualitative data from focus groups and individual interviews with people with dementia and their carers in the North of England. In total, 65 people with dementia and 82 carers took part in the research: 26 in interviews and 121 in focus groups. Focus group and interview audio recordings were transcribed verbatim. A qualitative, inductive, thematic approach was taken for data analysis. Findings: the article applies the metaphor of scaffolding to deepen understanding of the strategies used by families. Processes of scaffolding were evident across the data where families, communities, professionals and services worked together to support everyday life for people with dementia. Within this broad theme of scaffolding were three sub-themes characterising the experiences of families living with dementia: doing things together; evolving strategies; and fragility and fear of the future. Conclusions: families with dementia are resourceful but do need increasing support (scaffolding) to continue to live as well as possible as dementia progresses. More integrated, proactive work is required from services that recognises existing scaffolds and provides appropriate support before informal strategies become unsustainable; thus enabling people with dementia to live well for longer. 

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Spirituality among family caregivers in palliative care: an integrative literature review

Background: Family caregivers experience spiritual and existential concerns while caring for their terminally ill family members. Aim: To evaluate and synthesise studies on spirituality among family caregivers in palliative care. Design: An integrative literature review of peer-reviewed articles published between 2000 and 2016. Sample: Participants were family caregivers (parents, spouses, relatives or friends) caring for an adult (age>18 years) family member with a terminal illness in a palliative care setting. Results: Data from 26 published research papers were systematically analysed. Five themes were identified regarding spirituality and family caregiving: a close and meaningful connection, spirituality as a way of coping, spiritual needs and expressions among family caregivers, spirituality to transcend fears, and spirituality in family caregivers' decision-making. Implications for Practice: Nurses are encouraged to explore the spirituality and spiritual experiences of family caregivers to support their spiritual wellbeing while caring for their terminally ill family members. 

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"It's a waiting game" a qualitative study of the experience of carers of patients who require an alternate level of care

Background: Delayed hospital discharge (also known as Alternate Level of Care or ALC) is a global health care quality issue with negative implications for people (e.g., functional decline) and the health care system (e.g., costly interruptions in hospital flow and procedures). ALC disproportionately impacts people with cognitive impairment, and insight into the needs and experiences of this specific sub population and their carers is lacking. The purpose of this study was to understand the hospital experience of carers (e.g., family members) of patients with ALC and cognitive impairment who were waiting for long-term care from the hospital. Methods: This is a qualitative descriptive study entailing 12 semi-structured interviews with 15 carers of patients with ALC from three hospitals in Northwestern Ontario. Interviews were conducted between October 2015 and February 2016. Two reviewers thematically analyzed the interview data. Results: Five core themes were identified from the interview data: patient over person, uncertain and confusing process, inconsistent quality in care delivery, carers addressing gaps in the system, and personalization of long-term care. Conclusions: Waiting for long-term care from the hospital is a stressful and uncertain time for family carers. ALC is an 'in-between' phase when patients and carers may be at their most vulnerable yet receive the least care from the formal care system. Carers provide critical insight into the needs and behaviors of patients as well as processes that need to be improved to enhance their experience. Such insights will help health systems internationally as they grapple with the issue of ALC whilst trying to optimize engagement with patients and their families. 

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The complex relationship between household income of family caregivers, access to palliative care services and place of death: A national household population survey

Background: Previous work shows that more affluent patients with cancer are more likely to die at home, whereas those dying from non-cancer conditions are more likely to die in hospital. Family caregivers are an important factor in determining place of death. Aim: To investigate associations between family caregivers' household income, patients' access to specialist palliative care and place of patients' death, by level of personal end-of-life care. Design: A cross-sectional community household population survey. Setting and participants: Respondents to the Household Survey for England. Results: One-third of 1265 bereaved respondents had provided personal end-of-life care (caregivers) (30%). Just over half (55%) of decedents accessed palliative care services and 15% died in a hospice. Place of death and access to palliative care were strongly related (p < 0.001). Palliative care services reduced the proportion of deaths in hospital (p < 0.001), and decedents accessing palliative care were more likely to die at home than those who did not (p < 0.001). Respondents' income was not associated with palliative care access (p = 0.233). Overall, respondents' income and home death were not related (p = 0.106), but decedents with caregivers in the highest income group were least likely to die at home (p = 0.069). Conclusion: For people who had someone close to them die, decedents' access to palliative care services was associated with fewer deaths in hospital and more home deaths. Respondents' income was unrelated to care recipients' place of death when adjusted for palliative care access. When only caregivers were considered, decedents with caregivers from higher income quartiles were the least likely to die at home. Family caregivers from higher income brackets are likely to be powerful patient advocates. Caregiver information needs must be addressed especially with regard to stage of disease, aim of care and appropriate interventions at the end of life. 

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Health sciences library outreach to family caregivers: a call to service

This commentary discusses the information needs of family caregivers and care recipients in the United States. Health sciences library services and outreach activities that support family caregivers include: (1) advocacy, (2) resource building, and (3) programming and education. Ethical issues related to the privacy and confidentiality of clients are outlined in the commentary for information service providers. Also, continuing professional education resources are identified to assist librarians in providing high-quality information services for this special family caregiver population, such as those designed by the National Library of Medicine (NLM) through the NLM 4 Caregivers program. 

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Effects of Methicillin-Resistant Staphylococcus aureus/Multiresistant Gram-Negative Bacteria Colonization or Infection and Isolation Measures in End of Life on Family Caregivers: Results of a Qualitative Study

Background: Little is known about the experiences of family caregivers of hospitalized patients with confirmed methicillin-resistant Staphylococcus aureus/multiresistant gram-negative bacteria (MRSA/MRGN) diagnosis at the end of life. The study at hand is a subproject of an interdisciplinary cooperation project that aims at developing a patient-, family-, and team-centered approach in dealing with MRSA/MRGN-positive hospitalized patients in palliative and geriatric care. Objectives: The present study aimed to assess the individual effects of the patient's MRSA/MRGN colonization or infection and isolation measures on family caregivers. Design: Between April 2014 and September 2015, all known family caregivers associated with an MRSA/MRGN-positive patient from a palliative care unit, a hospital palliative care support team, and a geriatric ward were considered for study participation. A qualitative interview study with family caregivers and an additional focus group was conducted. Data were analyzed using the principles of Grounded Theory. Results: Family caregivers ( N = 62) raised suggestions regarding the provision of information and communication on the MRSA/MRGN diagnosis and hygiene measures from staff members and the consistency of hygiene procedures. Family caregivers requested not to be stigmatized or being disadvantaged due to the MRSA/MRGN diagnosis of the patient, and they wished to receive psychosocial and emotional support. Conclusions: Staff members and institutional stakeholders should be aware that family caregivers might be burdened and upset by positive MRSA/MRGN diagnosis and the required hygiene measures. The need for detailed and understandable information on MRSA/MRGN, adequate communication between staff members and family caregivers, and support for family caregivers should be of special attention in particular in end-of-life care. 

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Caregivers needing care: the unmet needs of the family caregivers of end-of-life cancer patients

Purpose: Family caregivers play a significant role in the care of cancer patients, especially in their end of life. Identifying and meeting the needs of these caregivers is essential to improving their quality of patient care. This study was conducted to identify the unmet needs of the caregivers of end-of-life cancer patients. Methods: A total of 18 semi-structured interviews were held with the family caregivers of end-of-life cancer patients using purposive sampling. The interviews were recorded, transcribed, and analyzed using qualitative content analysis. Results: The analysis of the data led to the formation of three main categories, including social needs, cognitive needs, and psychological needs. The social needs category comprised of the subcategories of support for care, effective communication and financial support. The cognitive needs category comprised of educational support and support in decision-making. The psychological needs category comprised of support for psychological trauma, preparation to confront the reality of the death of a loved one, and support for mourning. Conclusions: The family caregivers of end-of-life cancer patients take on the responsibility of many aspects of care for their patient, but many of their own needs remain unmet. The findings of this study can be used for healthcare policy planning and the development of palliative interventions, particularly for the family caregivers of end-of-life cancer patients. 

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Communicating Caregivers' Challenges With Cancer Pain Management: An Analysis of Home Hospice Visits

Context: Family caregivers (FCGs) of hospice cancer patients face significant challenges related to pain management. Addressing many of these challenges requires effective communication between FCGs and hospice nurses, yet little empirical evidence exists on the nature of communication about pain management between hospice nurses and FCGs. Objectives: We identified ways in which FCGs of hospice cancer patients communicated their pain management challenges to nurses during home visits and explored nurses' responses when pain management concerns were raised. Methods: Using secondary data from audio recordings of hospice nurses' home visits, a deductive content analysis was conducted. We coded caregivers' pain management challenges and immediate nurses' responses to these challenges. Results: From 63 hospice nurse visits, 101 statements describing caregivers' pain management challenges were identified. Thirty percent of these statements pertained to communication and teamwork issues. Twenty-seven percent concerned caregivers' medication skills and knowledge. In 52% of the cases, nurses responded to caregivers' pain management challenges with a validating statement. They provided information in 42% of the cases. Nurses did not address 14% of the statements made by caregivers reflecting pain management challenges. Conclusion: To optimize hospice patients' comfort and reduce caregivers' anxiety and burden related to pain management, hospice nurses need to assess and address caregivers' pain management challenges during home visits. Communication and educational tools designed to reduce caregivers' barriers to pain management would likely improve clinical practice and both patient- and caregiver-related outcomes. 

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Challenges Experienced by and Quality of Life of Relatives of Cancer Patients Requiring Palliative Care at Home

OBJECTIVE The aim of this descriptive study was to determine challenges experienced by and quality of life of relatives of cancer patients requiring palliative care at home. METHODS This research was conducted with the relatives of patients hospitalized in the palliative care service. Data collection tools used in the study were the "Questionnaire to Assess Challenges of Home Care Providers" and the "Caregiver Quality of Life Index-Cancer Scale" (CQOLC). RESULTS Mean age of the caregivers was 44.4±13.2. Of them, 50% were women. Of the women, 61.7% were housewives. Of all caregivers, 75% had difficulty fulfilling their responsibilities, 53.3% experienced problems in maintaining family relationships, 96.7% did not utilize home care services, and 43% did not receive information about home care. The caregivers also had trouble managing the following issues: pain (80%), nausea/vomiting (70%), defecation (56.7%), and mobility (35%). Mean CQOLC score of the caregivers was 49.7. Mean score on subscales of the CQOLC was 21.58 on the burden subscale, 39.7 on the disruptiveness subscale, 57.7 on the financial concern subscale, and 116.1 on the positive adaptation subscale. Respondents' quality of life was generally low. CONCLUSION Palliative care team should be aware of the needs of caregivers and provide support. Expanding the scope and content of palliative and home healthcare services, improving the quality of these services, and organizing well-educated teams in this branch will better meet the needs of patients and their caregivers and promote their quality of life. 

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Anxiety, depression and quality of life in family caregivers of palliative cancer patients during home care and after the patient's death

We examined psychological parameters in family caregivers of palliative cancer patients before and after the death of the patients. Caregivers’ data about depression and anxiety (Hospital Anxiety and Depression Scale), quality‐of‐life (Short Form‐8 Health Survey), and social support (Oslo Social Support Scale) were collected at the beginning of home care (t1) and 2 months after the patient had died (t2). Regression models were employed to examine factors related to depression and anxiety in the bereaved caregivers. We interviewed 72 relatives, who were the primary caregiver of a patient. One‐third (31.9%) of caregivers had high anxiety levels and 29.2% had high depression levels (t1, cut‐off = 10). At t2, anxiety and depression had decreased significantly. There were no changes in quality‐of‐life over time. At both points of assessments, quality‐of‐life was lower than in the general population. Relevant factors for higher anxiety and depression in the bereaved caregivers were high levels of distress at t1, insufficient social support and low physical function. Bereaved caregivers were particularly depressed when they had been the spouse of the patient. Healthcare professionals should consider social isolation of caring relatives both during homecare and afterwards. Thus, it seems to be important to routinely offer support to spouses. 

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How to make carer involvement in mental health inpatient units happen: a focus group study with patients, carers and clinicians

Background: Carers are family members or friends who support people with a mental health problem without being paid. Carer involvement in mental health treatment has been consistently supported by research evidence and promoted by policies but its implementation rates are poor. Particularly when patients are treated in inpatient units, carers often report being left without information or being excluded from decisions about treatment. In this study we have explored, along with staff perspectives, views of patients and carers who had a recent experience of inpatient mental health care on how to improve the implementation of carer involvement in inpatient care. Methods: Sixteen focus groups were held with carers, patients and clinicians in London, United Kingdom. We included staff working in inpatient units and patients and carers who had experience of inpatient care in the last five years. Data from focus groups were analysed using thematic analysis. Results: Eighty six participants in total (31 service users, 22 carers and 33 clinicians) attended the focus groups. Participants identified that generally, carer involvement should happen as soon as possible after admission, although this may be challenging in some cases. Carer involvement should include receiving information, participating in decisions about care and discharge and receiving emotional support by staff. When carers are involved, their personal knowledge of the patient's condition should be utilised. Challenges to carer involvement may include problems with identifying carers during a mental health crisis, obtaining valid patient consent, sharing appropriate information, and contacting and engaging carers. Additionally, it was perceived that all the ward staff need to be actively engaged in order to make carer involvement happen and this cannot be left only to specifically trained clinicians. Conclusions: These findings identify basic components that all family interventions in inpatient units should have. Further studies are needed to explore how and if purposively designed clinical interventions can improve carer involvement in inpatient treatment and, consequently, patient outcomes. 

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Caring for the Caregiver: Identifying the Needs of Those Called to Care Through Partnerships with Congregations

As the older adult population continues to grow, the prevalence of chronic diseases is also increasing, leading to the need for novel ways of managing this large population of patients. One solution is to focus on informal caregivers. These informal caregivers already make a substantial contribution to our nation's healthcare finances and patient health outcomes. Caregivers also derive benefits from caring for their family member or friend; however, it is not uncommon for these individuals to experience negative health consequences, or what is often called 'burden of care.' Those called to care are not without their own burdens, and they must frequently make significant lifestyle adjustments that impact their own health. Therefore, for caregivers to be effective, caring for the caregivers must be a focus of medicine in the twenty-first century. 

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Informal Caregivers' Experiences of Caring of Multiple Sclerosis Patients: A Qualitative Study

Background: Approximately one-third of people suffering from multiple sclerosis (MS) need long-term care by their families, however, we know little of their experiences. Exploring these experiences can be a guideline to improve the quality of care for MS patients. The goal of this study is to explore informal caregivers' experiences regarding care of MS patients. Materials and Methods: A qualitative content analysis method was used to conduct this study in 2014. The study participants were 23 informal caregivers of MS patients who were chosen by purposeful sampling from the MS association of Iran. Data was analyzed by content analysis. Results: The analysis resulted in the emergence of six themes and seventeen subthemes. The main themes were being plagued, mental health damage, being captive among obstacles, perception of the affected family, being an emotional supporter, and need to maintain the functional independence of the patient. Conclusions: The findings represent the mean of long-term care by informal caregivers of MS patients, as well as the needs and challenges of this relationship. The findings can serve to create a framework for developing nursing care processes and planning educational sessions and support programs for MS patients and their informal caregivers. 

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Family Caregivers: A qualitative study to better understand the quality-of-life concerns and needs of this population

BACKGROUND: While providing physical, psychological, and spiritual care to their loved ones with cancer, family caregivers (FCGs) are physically and emotionally vulnerable to the tolls of caregiving. Patients and FCGs experience the uncertainty that comes with illness and treatment, its side effects, the lack of control, the emotional upheaval, the spiritual doubt, and the helplessness of advancing disease. OBJECTIVES: This study was conducted to better understand the quality-of-life needs of the FCG population, particularly those who encounter financial strain related to patients' cancer and treatment. METHODS: This qualitative study of FCG concerns was conducted in association with a randomized trial of an FCG support intervention. Twenty FCGs of patients with solid tumor cancers were interviewed in person or via telephone for this study. The FCG version of the City of Hope quality-of-life tool, which consists of four domains of well-being (physical, psychological, social, spiritual), was applied to the content analysis of interviews. FINDINGS: Care for FCGs is needed across all quality-of-life domains. 

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Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial

Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. Aim: To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Design: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. Setting/participants: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. Results: The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001). Conclusion: Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers. 

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Beyond diagnosis and survivorship: findings from a mixed-methods study of a community-based cancer support service

This consumer-led research investigated the client experiences and the individual and community benefits of a community-based cancer support service operating in a regional setting. The study included cross-sectional surveys, focus group discussions and key-informant interviews. In total, 114 clients, 28 carers and 20 therapists were surveyed; three client focus groups were conducted and five directors and staff were interviewed. For many clients and carers, the warm welcome experienced at first contact sets the tone for a long-term association with the organisation. The feeling of being cared for extends to the broader community and living with cancer becomes more than survivorship. Integral to the organisational model are opportunity (second-hand) shops that enable subsidised complementary therapies and other services, offer a way of giving back and assist disadvantaged community members. The organisational model has benefits, not only for people living with cancer and their families, but also for the wider community. 

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Understanding experiences of undergoing transcatheter aortic valve implantation: one-year follow-up

Background: Transcatheter aortic valve implantation (TAVI) is the treatment of choice for frail, older adults with severe symptomatic aortic stenosis. Although research about long-term clinical outcomes is emerging, there is limited evidence from the perspectives of patients and family caregivers on their perceived benefits and challenges after TAVI. Aims: The aim of this study was to describe older adults and family caregivers’ perspectives on undergoing TAVI at one year post-procedure. Methods: Qualitative description was the method of inquiry. A purposive sample of 31 patients and 15 family caregivers was recruited from a TAVI programme in western Canada. Semi-structured interviews were conducted with participants one year after TAVI. Data were analysed thematically. Results: All participants were satisfied with the decision to undergo TAVI. There were three central themes. First, recovery was experienced in the context of aging and comorbidities, which was shaped by patients’ limited options for care and post-procedure symptom burden. Second, reconciling expectations with reality meant that, for some patients, symptom burden remained prevalent and was also influenced by others’ expectations. Third, recommendations for recovery related to having information needs met, keeping informed of evolving care processes, and addressing individualised needs for support. Conclusions: The perspectives of participants provide a valuable contribution to the literature about undergoing TAVI. Clinicians need to be attentive to patients’ expectations of benefit and temper these with consideration of the individual’s broader health situation to provide treatment decision support. Patients and family caregivers also need adequate teaching and support to facilitate safe transition home given the shift towards early discharge after TAVI. 

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Recommendations from the Salzburg Global Seminar on Rethinking Care Toward the End of Life

Objective: In December 2016, 66 health leaders from 14 countries convened at the Salzburg Global Seminar (SGS) to engage in cross-cultural and collaborative discussions centered on 'Rethinking Care Toward the End of Life'. Conversations focused on global perspectives on death and dying, challenges experienced by researchers, physicians, patients and family caregivers. This paper summarizes key findings and recommendations from SGS. Design: Featured sessions focused on critical issues of end of life care led by key stakeholders, physicians, researchers, and other global leaders in palliative care. Sessions spanned across several critical themes including: patient/family/caregiver engagement, integrating health and community-based social care, eliciting and honoring patient preferences, building an evidence base for palliative care, learning from system failures, and delivering end of life care in low-resource countries. Sessions were followed by intensive collaborative discussions which helped formulate key recommendations for rethinking and ultimately advancing end of life care. Results: Prominent lessons learned from SGS include learning from low-resource countries, development of evidence-based quality measures, implementing changes in training and education, and respecting the personal agency of patients and their families. Conclusion: There is a global need to rethink, and ultimately revolutionize end of life care in all countries. This paper outlines key aspects of end of life care that warrant explicit improvement through specific action from key stakeholders.

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A person‐centred approach to family carer needs assessment and support in dementia community care in Western Australia

This feasibility study aimed to identify and address the support needs of family carers (FCs) of people living with dementia and to assess whether the use of the Carer Support Needs Assessment Tool (CSNAT) intervention in home‐based care was acceptable and relevant to FCs. The CSNAT intervention comprised two FC support needs assessment visits, 7 weeks apart, plus associated actions addressing prioritised needs by the Client Care Advisors of a community care service in Western Australia in 2015. Telephone interviews were conducted with FCs on their experience using the CSNAT at the end of the intervention. Twenty‐one FCs were involved in the intervention and 15 of them completed the feedback interviews. Care recipients had moderate to severe dementia. The top five support needs reported by FCs were: having time to yourself in the day; knowing what to expect in the future; practical help in the home; looking after your own health and dealing with your feelings and worries. Three themes summarised their experience: a straightforward structured approach; awareness, acknowledgement and acceptance of their situation; and provision of support. FCs appreciated the opportunity to be heard and acknowledged, to have their practical and psychosocial support needs facilitated, to identify what is important to them and to receive a response in a timely manner. The CSNAT approach offered a structured carer‐led, person‐centred, supportive intervention that facilitated discussion between the family carer and the service provider about support needs and strategies to address them. 

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Family carers' experiences of receiving the news of a diagnosis of Motor Neurone Disease: A national survey

Family carers have a central role in the care and support of people with MND and face the challenges of the disease from diagnosis to progression and the multiple losses of MND, but their support needs are often neglected. This study aimed to investigate the experiences of family carers at the time of diagnosis and their satisfaction with receiving the news. An anonymous postal survey was facilitated by all MND Associations in Australia (2014) and 190 family carers completed the questionnaire. The questions centred on the SPIKES protocol for communicating bad news. Two-thirds of family carers rated the skills of their neurologists as above average and were satisfied with the delivery of the diagnosis, in terms of having a significantly longer consultation time, the neurologist being warm and caring, satisfaction with the amount and content of information they received and relevant supports, and a plan for following up support. Conversely those who rated the neurologist's skills as below average commented on the difficulties they encountered and the long term emotional stress engendered by poor communication. The study emphasises previous research that suggested that neurologists may require education and training in communicating the diagnosis and this should include family carers as a vital member in MND care.; Copyright © 2016 Elsevier B.V. All rights reserved.

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Educational preparation and training of the family caregivers of elderly patients with stroke in the pre-discharge period: A proposed innovation

Introduction: Stroke causes disability that affects the life of patients, their relatives and the society in general. Global healthcare policies, suggest the sooner possible discharge of stroke patients from hospitals, but the transition to home is a stressful experience for family caregivers who are suddenly faced with the responsibility of homecare provision. Sufficient international evidence suggest that a pre-discharge educational program for preparing family caregivers could lead to better care, less complications and better quality of life, but Cyprus still do not provide such a program. Objectives: To challenge the current healthcare practices regarding the care of elderly patients with stroke and to propose an innovative training program that will be provided by the nurses during the pre-discharge period to family caregivers. Methodology: The proposed innovation is discussed around an overview of the international literature regarding the family caregivers' education in the improvement reforms that are being pursued with the new national health system of Cyprus. Additionally, it is suggested that the Ministry of Health should create discharge services of elderly stroke patients in each hospital with the creation of a Discharge Coordinator role, who could coordinate the proposed innovation, while he/she could also inform staff on how to provide the training program to family caregivers.discharge planning and the Lewin's change theory, since the development and implementation of the innovation as a whole is based on this theory. Results: International literature highlights that family caregivers have a diversity of responsibilities at home but also unmet training needs. If these needs are not met, they may cause burden to caregivers, thus impeding their capacity to provide safe homecare to patients. Considering the significance of post-discharge homecare to the elderly patients with stroke, a proposed training program was designed for family caregivers, in an effort to motivate nurses in Cyprus to provide this preparation. Conclusions and recommendations: An attempt should be made as for the proposed innovation to be included in the future planning of the care of stroke patients as part of the  improvement reforms that are being pursued with the new national health system of Cyprus. Additionally, it is suggested that the Ministry of Health should create discharge services of elderly stroke patients in each hospital with the creation of a Discharge Coordinator role, who could coordinate the proposed innovation, while he/she could also inform staff on how to provide the training program to family caregivers. 

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The experience of psychological distress in family caregivers of people with dementia: A cross‐sectional study

Purpose: To evaluate the degree of psychological distress in family caregivers of people with dementia. Design and Methods: A nonprobabilistic sample of 54 dyads (people with dementia and family caregivers) was recruited. A sociodemographic questionnaire, the Brief Symptom Inventory (BSI), and the Barthel Index were used for data collection. Findings: About half of the caregivers had significant levels of psychological distress. Caregivers showed high scores in some BSI dimensions: somatization, obsessive–compulsion, interpersonal sensitivity, anxiety, and paranoid ideation. Practice Implications: Alleviating the caregivers’ distress is likely to have positive effects on the overall health and capacity to care. Frameworks for providing palliative care to people with advanced dementia and support the caregivers would enhance the quality of care provided and may reduce the distress on the caregiver. 

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Understanding patient and relative/carer experience of hip fracture in acute care: A qualitative study protocol

Background: This paper presents a qualitative study protocol focusing on older peoples' experience of recovery in acute care following hip fracture and also the experiences of their family or informal carers. There is limited evidence regarding older people and their relatives'/carers' experiences of recovery in acute care.; Aim: The study had two research questions. First what is the experience of older people who have suffered a fractured hip and secondly what is the relatives'/carers' experience of being alongside a person who has suffered a fractured hip?; Methods: The methodology chosen is phenomenology using the methods of interviewing and participant observation. It is planned to recruit a purposive sample of up to 40 patients including those with memory loss who have suffered a fractured hip, and up to 30 of their relative/carers, and up to 20 staff may choose to take part in the observation sessions. Analysis will be through drawing out units of meaning, bringing them together to form categories and themes of experience.; Conclusion: This study will extend knowledge by exploring what is important to patients and their relatives/carers in the early phase of recovery. Practice based principles that can be integrated into the hip fracture pathway and enhance future care will be developed from the study findings.; Crown Copyright © 2016. Published by Elsevier Ltd. All rights reserved.

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Rural end-of-life care from the experiences and perspectives of patients and family caregivers: A systematic literature review

Background: End-of-life care must be relevant to the dying person and their family caregiver regardless of where they live. Rural areas are distinct and need special consideration. Gaining end-of-life care experiences and perspectives of rural patients and their family caregivers is needed to ensure optimal rural care.; Aims: To describe end-of-life care experiences and perspectives of rural patients and their family caregivers, to identify facilitators and barriers to receiving end-of-life care in rural/remote settings and to describe the influence of rural place and culture on end-of-life care experiences.; Design: A systematic literature review utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.; Data Sources: Four databases (PubMed, CINAHL, Scopus and Web of Science) were searched in January 2016, using a date filter of January 2006 through January 2016; handsearching of included article references and six relevant journals; one author contacted; pre-defined search terms and inclusion criteria; and quality assessment by at least two authors.; Results: A total of 27 articles (22 rural/remote studies) from developed and developing countries were included, reporting rural end-of-life care experiences and perspectives of patients and family caregivers. Greatest needs were informational (developed countries) and medications (developing countries). Influence of rural location included distances, inaccessibility to end-of-life care services, strong community support and importance of home and 'country'.; Conclusion: Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers' experiences and perspectives on rural end-of-life care. Further research is encouraged, especially through national and international collaborative work.

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Health related quality of life during cancer treatment: Perspectives of young adult (23-39 years) cancer survivors and primary informal caregivers

Purpose: There is a paucity of information regarding health related quality of life (HRQoL) of young adults (YAs) with cancer and caregivers. Therefore, we characterize YA and caregiver perspectives on the impact of cancer and its treatment on HRQoL.; Methods: We conducted descriptive qualitative in-depth, semi-structured interviews with YAs receiving cancer care at an academic health center in Albuquerque, New Mexico (USA) and primary informal caregivers. The interviews, conducted from September through December 2015, focused on perspectives on the impact of the disease and its treatment in terms of physical and emotional effects, coping, and strategies to enhance HRQoL. We used an iterative thematic analysis approach to identify emergent themes and create a coding structure.; Results: We reached thematic saturation after interviewing 8 YAs and 8 caregivers. YAs and caregivers discussed cancer triggered challenges such as anxiety, depression, isolation, fear, and financial hardships. YAs and caregivers coped by maintaining positive perspectives, relying on friends and family, and prayer. Caregivers discussed how expectations for and experiences of a "good day" changed depending on their loved ones' stage of cancer treatment. YAs navigated challenges by focusing on activities and thoughts that provided meaning to their lives. YAs and caregivers suggested strategies to enhance HRQoL through patient/provider communication, support services, and decision making tools as potential mechanisms for grounding patient-centered interventions to improve cancer care.; Conclusions: Implications include the development and evaluation of informational and behavioral interventions tailored and targeted to address the pragmatic needs of YAs undergoing cancer treatment and informal caregivers.; Copyright © 2017 Elsevier Ltd. All rights reserved.

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Contextual Exploration of a New Family Caregiver Support Concept for Geriatric Settings Using a Participatory Health Research Strategy

Family caregivers are the backbone of the long-term care support system within the home environment. Comprehensive caregiver support programs require collaboration and coordination within the system. A new public health concept, Vade Mecum, aims to harmonize and professionalize family caregiver support initiatives in geriatric care settings in the Euregion Maas-Rhine. Exploration of the new concept recently started in Germany to gain in-depth insight into current support and the needs of the geriatric care team and family caregivers. Within the context of an exploratory qualitative study, a participatory health research (PHR) strategy was applied to make optimal use of experience and knowledge from the system. Care professionals, engaged as co-researchers, were responsible for decisions about the research question, data collection methods and procedures of engaging family caregivers. A research team representing all professions within the geriatric department was formed. Research objectives were formulated and an appropriate mix of qualitative data collection methods consisting of interviews, focus groups and story-telling was chosen. Needs and expectations of the new concept, and practical solutions for involving family caregivers were discussed. A PHR strategy resulted in initiating a qualitative study in a geriatric care setting carried out by care professionals from the department. Knowledge was generated in a co-creative manner, and co-researchers were empowered. A comprehensive understanding of the system serves as a starting point for advancement of the new family caregiver concept.

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How continuity of care is experienced within the context of integrated palliative care: A qualitative study with patients and family caregivers in five European countries

Background: Patients with advanced diseases often experience deficient continuity of care. Although integrated palliative care promotes continuity of care, it is not clear how it can be optimized to improve continuity of care experiences.; Aim: To examine how relational, informational and management continuity of care are experienced by patients with advanced diseases and their family caregivers receiving care from several integrated palliative care initiatives in five European countries.; Design: We adopted a longitudinal qualitative study design including two interviews (interval 3 months) with patients and family caregivers focusing on how health care professionals responded to their needs. Interviews were audio-recorded and transcribed verbatim. Analysis involved a two-step qualitative content approach.; Setting/participants: A total of 22 integrated palliative care initiatives (established local palliative care collaborations) were selected in Belgium, Germany, Hungary, the Netherlands and the United Kingdom. We recruited 152 patients (63% cancer, 24% chronic obstructive pulmonary disease, 13% heart failure; life expectancy <1 year; mean age 68 years, 56% female) and 92 family caregivers (mean age 61 years, 66% female).; Results: Trusted relationships with a small number of key health care professionals to receive tailored care and easily access help were essential. Relational continuity was often deficient, especially with general practitioners. Although informational and management continuity was often lacking in care provision, collaborative integrated palliative care initiatives were related to consistent and coherent care.; Conclusion: Patients and family caregivers most likely experience continuity of care by having a small number of trusted health care professionals who are available, provide multidisciplinary care and regularly transfer information to all health care professionals involved. Optimizing continuity of care requires further integration of integrated palliative care initiatives with other health care professionals involved in the patients' care networks.

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State of Caring 2018

A total of 7,397 carers and former carers responded to Carers UK’s annual State of Caring survey between March and May 2018. 

Only responses from the 6,828 people currently providing care who completed the survey are included in this report as it is designed to provide a snapshot of caring in 2018. However, Carers UK will be using the responses of former carers in other pieces of work throughout the year. 

Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. 

Of respondents to the State of Caring Survey 2018 who are currently caring:

  • 75% live in England, 8% live in Northern Ireland, 9% live in Scotland, and 8% live in Wales.
  • 78% identify as female and 20% identify as male.
  • 24% consider themselves to have a disability.
  • 1% are aged 0-24, 4% are aged 25-34, 12% are aged 35-44, 30% are aged 45-54, 33% are aged 55-64, 15% are aged 65-74 and 5% are aged 75 and over. As fewer 1% of carers currently providing care who are under 18 took part in the survey, we have not explored results specifically for this group in the report. 
  • 3% are lesbian, gay or bisexual.
  • 12% also have childcare responsibilities for a non-disabled child under 18.
  • 38% are in paid work (49% full-time and 51% part-time).
  • 33% have been caring 15 years or more, 15% for between 10-14 years, 24% for 5-9 years, 25% for 1-4 years and just 3% have been caring for less than one year. 
  • 47% care for 90 or more hours every week, while 16% care for 50-89 hours, 24% for 20-49 hours and 5% care for 1-19 hours a week.
  • Most (75%) care for one person, 19% care for two people, 4% for three people and 2% care for four or more people.
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Predictors and moderators of quality of life in caregivers of amputee patients by type 2 diabetes

Background: The amputation of a foot or a leg is one of the complications caused by diabetes that creates fear. After the amputation, the patient becomes dependent on a caregiver, who is often not prepared for this new phase of life. Knowing the factors that influence care delivery in caregivers of amputee type 2 diabetes patients is important from an heuristic point of view, since very few studies have focused on this population. Objectives: This study analysed the predictors and moderators of quality of life, in caregivers of amputee patients due to type 2 diabetes. Methods: This study has a cross‐sectional design. All ethical standards were followed in the conduct of this study. The sample comprised 101 caregivers who answered the following instruments: Carer's Assessment of Managing Index, Burden Assessment Scale, Depression Anxiety Stress Scales, Revised Impact of Events Scale, Family Assessment Device, Family Disruption from Illness Scale and the Short Form Health Survey‐36. Results: The practice of physical activity, lower burden, better family functioning and less traumatic symptoms were predictors of better mental quality of life. Having no chronic disease and less physical symptoms predicted better physical quality of life. Duration of care moderated the relationship between traumatic symptoms and mental quality of life, but not with physical quality of life. Receiving help in caregiving moderated the relationship between traumatic symptoms and mental quality of life. The limitations of this study include the exclusive use of self‐report instruments and the fact that the caregivers who have participated in this study were those who accompanied the patient to the hospital. Conclusion: In order to promote physical quality of life, future intervention programmes should consider the presence of chronic disease in the caregiver and the duration of care, as well as the caregivers’ physical symptoms. 

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NSW Carers Strategy 2014-2019

The NSW Carers Strategy 2014-2019 outlines the NSW Government’s vision and commitment to improving the lives of carers over the five-year period.

The NSW Carers Strategy is a five year plan to improve the position of carers in NSW. The Department of Family and Community Services (FACS) led development of the NSW Carers Strategy with assistance from carers, the Ministry for Health and Carers NSW.

Carers NSW supports the vision, the five focus areas and the actions and commitments in the NSW Carers Strategy 2014-2019. 

The Strategy's vision is that: 

  • Carers and caring are respected and valued
  • Carers have the time and energy to care for themselves
  • Carers have the same rights, choices and opportunities as other members of the community

The commitments in the Strategy are based on practical actions and approaches that will make a difference in the lives of carers, in the five focus areas of:

  • Employment and education
  • Carer health and wellbeing
  • Information and community awareness
  • Carer engagement
  • Improving the evidence base

Over the next five years the NSW Carers Strategy will be implemented in collaboration with carers, the private sector, non-government organisations and government to achieve better and long lasting outcomes for carers. Carers NSW will play a key role in leading a number of the actions in partnership with other agencies.

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Administration of Subcutaneous Injections

This article is the second in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The second video can be accessed at http://links.lww.com/AJN/A75

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Dying in hospital: Qualitative study among caregivers of terminally ill patients who are transferred to the emergency department

Introduction: Most people in France die in the hospital, even though a majority would like to die at home. These end-of-life hospital admissions sometimes occur in the emergency setting, in the hours preceding death.; Objective: To understand the motives that incite main natural caregivers to transfer terminally ill patients at the end of life to the emergency department.; Methods: A qualitative study was performed among caregivers of terminally ill patients receiving palliative care and living at home, and who died within 72hours of being admitted to the emergency department of the University Hospital of Besançon, France.; Results: Eight interviews were performed; average duration 48minutes. The caregivers described the difficult conditions of daily life, characterised by marked anguish about what the future might hold. Although they were aware that the patient was approaching the end of life, the caregivers did not imagine the death at all. The transfer to the emergency department was considered as a logical event, occurring in the continuity of the home care, and was not in any way criticised, even long after death had occurred. Overall, the caregivers had a positive opinion of how the end-of-life accompaniment went.; Discussion: Difficulty in imagining death at home is underpinned by its unpredictable nature, and by the accumulation of suffering and anguish in the caregiver. Hospital admission and medicalisation of death help to channel the caregiver's anguish. In order to improve end-of-life accompaniment, it is mandatory to make home management more reassuring for the patient and their family.; Copyright © 2018 Elsevier Masson SAS. All rights reserved.

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Bereaved Caregivers to Patients With High-Grade Glioma: A Qualitative Explorative Study

Purpose: The disease and treatment trajectory of patients with high-grade glioma is a burdensome period for the patients' closest relatives who become informal caregivers. Caregivers experiencing this demanding shift in role are at risk of developing symptoms such as depression. Few studies have explored the needs and experiences of bereaved caregivers, and there is lack of evidence-based practice. This study explores the perspectives of newly bereaved caregivers to patients with high-grade glioma on end-of-life caregiving and bereavement.; Methods: This qualitative exploratory study was composed of individual semistructured telephone interviews with bereaved caregivers (n = 8) to patients with high-grade glioma who deceased during participation in the mixed-methods Neuro-oncological Rehabilitation study. A thematic analysis was conducted following Braun and Clarke's guidelines.; Results: Four main themes were identified concerning the bereavement experience: (1) late-stage caregiving is comprehensive and taxing, (2) releasing the responsibility of the primary caregiving role, (3) feelings of grief and relief, and (4) suggestions for clinical practice.; Conclusion: Late-stage caregiving is a difficult and challenging experience at the end of an already burdening treatment trajectory. Caregivers prefer to actively share responsibility and practical tasks with professionals, family, and friends. The bereaved caregivers' key areas of concern indicate the need for additional research in advance care planning within neuro-oncology caregiving to establish evidence-based practice guidelines and recommendations

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Family caregiver mistreatment of the elderly: prevalence of risk and associated factors

Background: The detection of elder mistreatment is emerging as a public health priority; however, abusive behaviors exercised by caregivers are little known and rarely detected among primary health care professionals. This study aims to estimate the prevalence of risk of abuse against community-residing elderly with moderate to severe dependency whose caregivers are relatives. In addition, we aim to describe the association between such a risk and socio-demographic variables, cognitive and dependency state of the victim, and the scale of the caregiver's anxiety, depression, and burden.; Methods: Cross-sectional study developed in 72 Primary Health Care teams from Barcelona, Spain. Participants were caregivers and their dependent care recipients (N = 829). Home interviews included the Caregiver Abuse Screen (CASE); self-reported abuse from care recipient; activities of daily living and cognitive state of the care recipient; anxiety and depression in caregivers and Caregiver Burden Scale. The relationship prior to the dependency, positive aspects of caregiving, and social support for the caregiver were also assessed. Multivariate analysis was performed using logistic regression with risk of abuse as dependent variable.; Results: Caregivers were mainly women (82.8%) with a mean age of 63.3 years. Caregivers and care recipients lived in the same household in 87.4% of cases, and 86.6% had enjoyed a good previous relationship. Care recipients were women (65.6%), with a mean age of 84.2 years, and 64.2% had moderate to severe cognitive impairment. CASE demonstrated a prevalence of 33.4% (95% CI: 30.3-36.7) of abuse risk by the caregiver. Logistic regression showed as statistically significant: caregiver burden (OR = 2.75; 95% CI: 1.74-4.33), caregiver anxiety (OR = 2.06; 95% CI: 1.40-3.02), caregiver perception of aggressive behavior in the care recipient (OR = 7.24; 95% CI: 4.99-10.51), and a bad previous relationship (OR = 4.66; 95% CI: 1.25-17.4).; Conclusions: Prevalence of risk of abuse is high among family caregivers. Our study has found risk factors in family caregivers that are preventable to an extent, namely: anxiety and feelings of burden. It is essential to become aware of these risk factors and their causes to intervene and help primary as well secondary prevention

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Teaching Caregivers to Administer Eye Drops, Transdermal Patches, and Suppositories

This article is the third in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The third video can be accessed at http://links.lww.com/AJN/A76 

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Medication Management for People with Dementia

This article is the fourth in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The fourth video can be accessed at http://links.lww.com/AJN/A78 .

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Psychological status and quality of life among primary caregivers of individuals with mental illness: a hospital based study

Background: This study aimed to explore the psychological status and quality of life among primary caregivers of individuals suffering from various mental illnesses including early psychosis, chronic schizophrenia, depressive disorders, anxiety disorders and dementia.; Methods: A total of 350 primary caregivers with relatives seeking treatment at a tertiary psychiatric hospital were recruited for this study. Socio-demographic data was obtained and the brief version of the World Health Organisation Quality of Life instrument was used to assess caregiver's quality of life (QOL). Psychological status among primary caregivers was assessed using the General Anxiety Disorder - 7 item (GAD-7) and Patient Health Questionnaire - 9 item (PHQ-9) scales. Family Interview Schedule (FIS) was used to assess the impact of caregiving relating to social problems, interpersonal strain among family members, work related problems and financial difficulties as a result of their relative's illness. The socio-demographic and clinical correlates of QOL, PHQ-9 and GAD-7 were examined using multiple linear and logistic regression analyses. Associations between QOL domains and psychological status was examined using multiple linear regression analyses.; Results: The mean age of the primary caregivers was 49.7 years (SD = 13.2), ranging from 21 to 82 years, with a preponderance of females (67.6%), aged 50-64 years old (45.7%). Majority were of Chinese ethnicity (57.5%), had secondary level education (43.1%), were married (65.2%), and employed (64.9%). 18.3% of primary caregivers had symptoms of depression (based on PHQ-9 cut-off point of 10 or greater) while 12.7% had symptoms of anxiety (based on GAD-7 cut-off point of 10 or greater). Multiple linear and logistic regression analyses revealed that primary caregivers aged between 35-49 years and 50-64 years, unemployed, living with others, providing care to those diagnosed with dementia and who had higher FIS scores were significantly more likely to report symptoms of depression whilst those who cared for their son/daughter were less likely to be associated with symptoms of depression. Primary caregivers who had lower education, were living with others, were single or divorced/separated, were unemployed and with higher FIS scores were associated with lower QOL domain scores. Those with symptoms of depression were significantly associated with low QOL across all four domains, whilst those with symptoms of anxiety were significantly associated with low QOL in the social relationships domain.; Conclusion: Psychological status of caregivers in the current study was associated with the various domains of QOL. In particular, caregivers' symptoms of depression were significantly associated with lower QOL across all four domains of QOL whereas symptoms of anxiety were associated with lower scores in the social relationships domain. The study suggests a need to provide caregivers with social support and psycho-education to improve the QOL as well as aid in developing healthy coping strategies.

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Managing Complex Medication Regimens

This article is the first in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The first video can be accessed at http://links.lww.com/AJN/A74.

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Spinal cord injury and long-term carers: Perceptions of formal and informal support

The grounded theory study from which this paper is drawn explored the experiences of partners and other long-term family carers living with, and supporting, a person with a spinal cord injury over long periods of time. Eleven (11) female carers with between eight and 33 years of living with, and supporting, a family member with a spinal cord injury were purposively recruited to the study. The study identified a number of key issues for long-term carers in this context. In this paper, the focus is on the extent to which longterm family carers perceived they were supported by health and social services. Findings revealed a significant need for practical and lifestyle assistance, including formal respite from familial and/or caregiving responsibilities when needed. Participants also sought out a range of health and social care services to address the loneliness, isolation, grief and loss, all of which can be involved in this experience. Participants revealed that their caregiver needs are usually not recognised by health service staff, and most expressed a desire for more recognition from health professionals for the important role they play in supporting the independence of the person in their care. The study also identified that participants tended to be more reliant on informal networks of support for practical assistance and other support. Findings on the experience, perceptions and support needs of family carers of people with lifelong disability provide valuable information of great relevance to rehabilitation practice.

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Cancer Communication on Social Media: Examining How Cancer Caregivers Use Facebook for Cancer-Related Communication

Background: Americans are increasingly using social media (such as Facebook, YouTube, and Twitter) for health-related communication. Much of the previous research on social media and health communication has focused on Facebook groups related to a specific disease or Facebook pages related to an advocacy organization. Less is known about how people communicate about cancer on personal Facebook pages.; Objective: In this study, we expand upon previous research by examining how cancer caregivers use personal Facebook pages for cancer-related communication.; Methods: We examined themes in cancer-related exchanges through a content analysis of 12 months of data from 18 publically available Facebook pages hosted by parents of children with acute lymphoblastic leukemia (15 852 total posts).; Results: Six themes emerged: (1) documenting the cancer journey, (2) sharing emotional strain associated with caregiving, (3) promoting awareness and advocacy about pediatric cancer, (4) fundraising, (5) mobilizing support, and (6) expressing gratitude for support.; Conclusions: Building upon previous research documenting the increasing use of social media for health-related communication and support, our findings show that personal Facebook pages offer a platform for cancer caregivers to share their cancer-related experiences, promote advocacy and awareness, and mobilize social support.; Implications For Practice: Providers must recognize the importance of social media as a vehicle for support and communication for families of children with cancer. Nurses should educate parents on how to appraise information obtained through Facebook using evidence-based guidelines. Providers can encourage caregivers to use Facebook as a tool for communication, information, and support

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The Impact of Supporting Family Caregivers Before Bereavement on Outcomes After Bereavement: Adequacy of End-of-Life Support and Achievement of Preferred Place of Death

Context: The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention. Objectives: This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers' perceptions of adequacy of support, their grief and well-being, and achievement of their preferred place of death. Method: All family caregivers who participated in a stepped-wedge cluster trial of the CSNAT intervention in Western Australia (2012-2014) and completed the pre-bereavement study (n = 322) were invited to take part in a caregiver survey by telephone four to six months after bereavement (2015). The survey measured the adequacy of end-of-life support, the level of grief, the current physical and mental health, and the achievement of the preferred place of death. Results: The response rate was 66% (152, intervention; 60, control). The intervention group perceived that their pre-bereavement support needs had been adequately met to a significantly greater extent than the control group (d = 0.43, P < 0.001) and that patients have achieved their preferred place of death more often according to their caregivers (79.6% vs. 63.6%, P = 0.034). There was also a greater agreement on the preferred place of death between patients and their caregivers in the intervention group (P = 0.02). Conclusions: The results from this study provide evidence that the CSNAT intervention has a positive impact on perceived adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The benefits gained by caregivers in being engaged in early and direct assessment of their support needs before bereavement reinforce the need for palliative care services to effectively support caregivers well before the patient's death. 

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The Unmet Needs of Patients and Carers within Community Based Primary Health Care

Introduction: Community Based Primary Health Care (CBPHC) is positioned as the foundation of integrated health systems, intended to support broader goals of population health and health system sustainability. CBPHC moves beyond traditional primary care (a physician visit) to team based care that spans organizational boundaries (such as primary care clinics + community care services). At the core of CBPHC are patients and their informal carers (family and friends) who can inform ongoing reforms in this sector by sharing their experience, particularly in areas that require improvement. The objective of this paper is to share the unmet needs of patients and caregivers within CBPHC. Methods: This study is part of a broader programme of research called, implementing integrated care for older adults with complex health needs (iCOACH). Semi-structured interviews are being conducted with older patients with complex care needs and with unpaid, informal carers across multiple CBPHC sites in Canada (Ontario and Quebec) and New Zealand. Interviews captured the roles, characteristics and needs of patients and carers, and were audio-recorded and transcribed verbatim. Interviews were reviewed by multiple team members and a consensus codebook was created. The code "unmet need" was extracted from the patient and carer transcripts, and analyzed for core themes using an inductive approach. Results: Unmet needs culminated into three broad themes across patient and carer interviews: Accessing Care; Quality of Care; and Missing Care. Many patients accessed care within CBPHC, but the model itself tended to be spread across multiple settings and providers. Patients and carers also required access to services that were outside the CBPHC model. Challenges arose due to lack of transportation, out-of-pocket expenses, limited availability of assistive devices to support mobility, and long wait times. Quality of care and relationships were compromised if there was a language barrier, and when services were misaligned with the preferences of patients and carers. Components of care were often missing, such as respite care for carers, supports for instrumental activities of daily living (e.g., home maintenance and transportation), and supports to reduce social isolation. Conclusions: Due to the complex health and social needs of patients and carers, they often require access to multiple services and providers who are seldom situated under the same roof. Finding ways to integrate across organizational boundaries may reduce areas of unmet need. Furthermore greater attention to the social determinants of health within CBPHC may create a more holistic experience for patients and carers. Lessons Learned: CBPHC is intended to deliver holistic integrated care but when situated within a fragmented health care system, challenges for patients and carers persist. Limitations: Further comparisons need to be made between the unmet needs between patients and caregivers in Canada and New Zealand. Suggestions for future research: Next steps will include the development of a framework that describes the policy and organizational context, and provider configurations in each of the study jurisdictions. How these factors relate to different patient and carer needs and experiences, including areas of unmet need, will be explored to inform the development of person centered CBPHC models. 

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How should we talk about palliative care, death and dying? A qualitative study exploring perspectives from caregivers of people with advanced cancer

Background: Health professionals commonly underestimate caregiver needs for information about palliative care, death and dying and may feel poorly prepared to discuss these issues. Few studies have sought caregiver perspectives of these communication practices. Aim: To explore caregiver perspectives on communication about death, dying and the introduction to palliative care, with a view towards a series of caregiver-informed recommendations for use in clinical practice. Design: Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Setting/participants: Purposively sampled, English-speaking, adult caregivers of people with advanced cancer (n = 25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Australia. Results: Caregivers reported wanting routinely available written resources about palliative care, supplemented by conversations that are ideally staged overtime. Education about the tasks of palliative care should be separated from referral process, allowing time for gradual adjustment, and re-visiting discussion to enable patients and families to take some control in the process of transition. Once death is imminent, carers wanted health professionals to clarify how much they want to know about the dying process; provide spoken acknowledgement when death is close; include the words 'death' and 'dying'; use direct language, avoiding euphemisms; and communicate about death with patient present. Conclusion: This study is among the first to directly address caregiver perspectives of communication about death, dying and the introduction to palliative care. The recommendations derived from caregiver perspectives build upon existing guidelines and offer health professionals some preliminary considerations around how to undertake these important communication tasks in future. 

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The medicines management needs of carers during an episode of mental health crisis

The article reviews the report "National Mental Health Development Unit 2010" highlighting the importance of involving carers particularly in crisis resolution and home treatment teams (CRHT), in managing medicines during a mental health crisis. The authors note the report's recommendation of developing training packages to help carers understand issues and enhance their understanding of mental health conditions and treatment options. They also recommend investigating the needs of young carers.

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Enabling future care

Little attention has been paid to the immense struggles facing disabled people and their caregivers as they try to plan their long-term futures. This book sets out practical ways to maximise future care options for such community care user groups. It focuses on the priorities of older caregivers and people with learning disabilities to give numerous suggestions for increasing control people have over their affairs and links these to central legislation and entitlement issues. The book will be invaluable to professionals and academics who work with families tackling pressing future care decisions.

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All Work and no Play? Understanding the Needs of Children with Caring Responsibilities

This article draws on research with children who provide care for parents with serious mental health problems and signals ongoing research that uses photographic participation methods with these groups of vulnerable children. The intention of this article is to highlight the need to move away from popular and simplistic representations of children with caring responsibilities (young carers) as victims of their parents’ illnesses, as ‘little angels’ whose caring work is condoned through rewards or as (exploited) informal domestic workers whose childhoods are inevitably compromised by the caring activity they undertake. Recommendations are made for generating deeper understanding about the lives and needs of children who are affected by parental impairment that is congruent with the thrust of current UK policy, Every Child Matters and the 2004 Children Act. 

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Children and adolescents as caregivers: who they are and what they do. An international literature review (1990-2006)

With a growing body of research on the situation of adult family caregivers in Germany, hardly anything is known about the situation of children who are involved into the care of their relatives. This literature study is part of a research project that intends to close this gap. Primarily, English literature of the last 15 years was analysed to gain insight into specific characteristics of young carers and their families. There is no standard definition of young carers. The prevalence of young carers has been underestimated for a long time; for Great Britain it is 1.5% of all children under the age of 18. Children provide caregiving tasks at any age, and the amount of their help grows with their age. The majority of young carers live in single-parent families, and the single parents are mostly mothers. More than half of the family members in need of care suffer from chronic illnesses that affect the body. There is a wide range of caregiving tasks described in the literature; young carers do the same as adult informal carers. However no uniform categorical system could be found, which makes comparisons between studies almost impossible. This might be due to a lack of a theoretical framework in most of the studies. Since it can be assumed, that children in Germany may become young carers as well, their situation needs to be studied under the specific circumstances of the German health care system.

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How to ensure your service is responsive to the needs of carers: a guide and action planning tool for managers and staff working in the health service in Newcastle

This guide and action planning tool aims to assist staff working in the health service to implement carer related elements in various government guidance. This includes 'Caring for carers', 'National framework for mental health', 'National framework for older people', NHS plan 2001 and 'Valuing people'.

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"I wanted to learn how to heal my heart": family carer experiences of receiving an emotional support service in the Well Ways programme

Family carers of people with mental illness provide an immense contribution to society in caring for mental health consumers. However, carers can experience substantial burdens and poor health outcomes themselves. Recognition of their needs for education and support has led to the development of a range of family education programmes. Throughout Australia, the Mental Illness Fellowship Australia offers the Well Ways programme, a group-based, family-to-family, education programme that provides information and aims to increase carers' capacity to care effectively for themselves, their families, and the mental health consumers. This paper describes a qualitative evaluation of an emotional support service piloted in a Well Ways programme in rural Queensland, Australia. The pilot service comprised individual emotional support offered to family carers attending the weekly Well Ways group education programme. Six of eight family carers who received the emotional support engaged in semistructured interviews exploring their experience of receiving the support. Three themes emerged from their experience: dealing with difficult times, connecting through shared experience, and exploring different options. Family carers found the emotional support beneficial, and reported that it enhanced their capacity to manage their own well-being, as well as their caregiving roles.

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Joint declaration on post-diagnostic dementia care and support

A shared approach to improving the care and support for people with dementia, their families and carers receive following a diagnosis. The declaration sets out: a shared commitment to joint action across government, health, social care, the third sector and all other relevant partners; the ambition to deliver better quality post-diagnostic care; and the need to deliver integrated and effective services that meet the needs of people with dementia and their families and carers.

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Inform with care: ethics and information in care for people with dementia

Good care is often positioned as a natural by-product of the widespread availability of good information (‘inform to care’). This paper contests this association through empirical investigation of the information–care relationship in the context of dementia care. It combines critiques of the ‘informatisation’ of care with insights from the epistemological dimension of care ethics to argue that information is better understood as ‘situated knowledge’ and that the relational practices of care involve the mobilisation and negotiation of different types of knowledge that are specific to caring relationships and contexts. The argument is illustrated through the three cases of caring relationships taken from a qualitative evaluation of an information and support course for carers of people with dementia. These cases highlight the specificity of caring relationships and the very different consequences of introducing new forms of knowledge into each relationship and provide evidence for the need for a paradigm shift where the idea of informing to care is replaced by a process of informing with care. In the former, information is understood as separate and outside of care, while nevertheless acting upon it to produce care; in the latter, information is understood as inextricably linked to care (with care) but not in any predetermined or uni-directional sense. The paper identifies key interlinked components of the ‘inform with care’ approach derived from the cases discussed.

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Costs and consequences for the carers of people with dementia in Ireland

This study examines the economic and psychological costs of care for family carers of people with dementia in Ireland. The analysis is based on an opportunistic survey of 98 carers of people with dementia. The article presents new findings on Irish carers' own perceptions of optimal care provision and the value of the care provided in monetary terms. Family carers in the survey provide an average of just under 12 hours of specified care each day to people with dementia. Many carers refer to the constant nature of care, with very high figures recorded for surveillance and supervision of the person with dementia. Irish caregivers spend considerably longer than they would wish caring for their relatives with dementia, allowing their mental health to suffer in the process. Carers would also like to be paid for the work that they do. Current arrangements for monetary compensation are, however, selective and therefore inadequate to meet the needs of most carers.

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Developing supportive care for family members of people with lung cancer: a feasibility study

Purpose: Families provide crucial support, yet their own needs often go unrecognised and, as a consequence, remain unmet. The purpose of this study was to evaluate a newly developed supportive intervention for family members of patients with lung cancer.

Materials and methods: A consecutive convenience sample of 25 family members of people with lung cancer received an individualised supportive intervention from a support nurse over a period of 12 weeks. This involved in-depth assessment followed up with a tailored plan of ongoing support to address informational, emotional, social and practical needs. A concurrent mixed method design explored perceptions and outcomes of those receiving the intervention and assess its appropriateness, acceptability and feasibility. Data were collected through a semi structured telephone interview with family members, and support nurses maintained a contact log. A questionnaire addressed emotional well-being [general health questionnaire (GHQ-12)], quality of life [quality of life family version (Family QoL)] and needs for care [family inventory of needs (FIN)]—at baseline and week 12.

Results: Family members perceived they had derived benefit from the intervention. Certain elements clearly emerged as important for participants, including being listened to by someone who could facilitate emotional expression, being provided with individually tailored information and receiving practical help and advice. Outcomes mapped to five main areas: information needs, communication between family members, emotional well-being, being supported and facilitating family member’s role. There was a trend for more needs to be met and quality of life and emotional well-being to improve at week 12.

Conclusion: This study has demonstrated that a supportive intervention for family members of patients with lung cancer can be delivered to good effect by experienced cancer nurses. The active components of the intervention have been distinguished and provide the basis for development of a larger sufficiently powered trial.

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The keys to life: improving quality of life for people with learning disabilities

The same as you?’ (2000) was the original 10-year programme designed to meet the needs of people with learning disabilities in Scotland. It was highly successful in shifting the balance of care to support more people to live in the community. This new 10-year strategy sets out a vision for improved partnership working to deliver better outcomes for people with learning disabilities, and their families and carers. It has more than 50 recommendations, most of which are aimed at health. The strategy also covers commissioning of public services; independent living; shifting the culture and keeping safe; breaking stereotypes; the needs of people with profound and multiple disabilities; criminal justice; and complex care. It includes good practice examples and case studies. Appendices include a glossary and weblinks to key organisations.

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Assessing the needs of carers

With the support of informal carers now recognised as a priority if people with significant needs are to live at home, Lesley Adcock examines the care given to an individual patient and her husband upon her discharge from hospital following a stroke injury.

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Training nurses to support carers of relatives with schizophrenia

Carers have an enormous amount of responsibility for the welfare and management of people with a mental illness in Britain, and many require help if they are to continue caring. Mental health nurses may be in a key position to offer support, but they are often unclear of what is required and how it should be delivered. Existing UK nurse-led psychosocial interventions for families often focus on the needs of the patient rather than the carer. This article describes a needs-led support service that has been designed for carers whose relatives are diagnosed with schizophrenia. It recognizes the importance of a collaborative partnership between carers and nurses. In 2000, 10 mental health nurses were trained to deliver this support to carers. An evaluation is currently underway. This article outlines the principles of the training programme and how it might enable nurses to meet the carers' needs.

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The long-term consequences of partnership dissolution for support in later life in the United Kingdom

There has long been an interest in the United Kingdom about whether and how changes in family life affect support for older people, but nevertheless the consequences of partnership dissolution for late-life support have been little researched. Using data from the British Household Panel Study (1991–2003), this study investigated the longitudinal association between partnership dissolution and two types of support for 1,966 people aged 70 or more years: (i) informal support from children in the form of contacts and help (e.g. household assistance including care), and (ii) formal support from community care services (i.e. health visitor or district nurse, home-help and meals-on-wheels). The paper also examines the level of reported support among: (i) all parents aged 70 or more years and (ii) 1,453 unpartnered parents in the same age group (i.e. those lacking the most important source of support in later life: a spouse). We found diversity in the experience of partnership dissolution in the past lives of people aged 70 or more years. Patterns of support varied by the respondent's age, whether partnered, the timing and type of partnership dissolution, and by gender, having a daughter and health status. Overall, however, partnership dissolution did not show the expected detrimental relationship with later-life support. Health needs and increasing age were strongly associated with increases in contact and informal and formal help, regardless of family history.

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The need to know: informal carers and information

There is a growing recognition that the carers of cancer patients require information. A key source of this information is the formal health care system that patients, and thus carers, encounter. However, the research literature suggests a lack of clarity on the part of service providers concerning the type, amount, timing and purpose of information for carers. This lack of clarity is reflected in the ways carers have been ‘tacked on’ to patients and thus are often treated as co-clients. That carers are also an active participants in the illness scenario is not always fully recognized, resulting in failure to provide appropriate information. Carers’ interactions with health service providers are complex and context bound, and entail potential tensions of allegiance in the arena of information exchange. This article suggests that the following research and practice is required: a clearer understanding of the informational needs of carers in variable situations, specific ways to address these needs, where carers ‘fit in’ to the health care system, and how processes of information exchange with carers can be improved.

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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