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Carer research and evidence

The following resources evaluate the type and scope of research evidence about carers, and commentary on its uses. How evidence informs policy.

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).

Affects of policy design: The case of young carers in the Care Act 2014 and the Children and Families Act 2014

Background: This article presents an analysis of policies on young carers in England, considering both the design but also the lived experience of policy subjects. Method: Drawing on affect theory we can increase understanding of the reach of these policies into family life and the nature of English policy‐making focussed on this group. This analytic framework presents the opportunity to draw on the use of affect theory developed in other disciplines but less so in the discipline of social policy. Findings: The article argues, firstly, that normative messages through policy design are conveyed to families through affects. Secondly, it argues that hierarchies of subject positions established within policy design are reaching and impacting on young carers and their families through affective pressures. Conclusion: This article demonstrates that affect theory contributes to the analysis of social policies on young carers and also illuminates the impacts of policies in the context of limited formal implementation.

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Carers Count: The importance of Census data 1

Video resource

In 2021 we were all asked a question about providing help to others, in the census. That information helps us pinpoint local needs, it helps us understand what is positive and what is problematic about caring and it helps us to understand who is providing care to others and who might need support. We spoke to experts in the field about how they are using information from the census about caring.

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Carers Count: The importance of Census Data 2

Video resource

CIRCLE researchers will be using the outcomes of the 2021 census to update our understanding of unpaid carers. The important research we do can help you understand Census data, and help inform decisions in your area which can lead to better quality of life for millions of people

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Rethinking Care Ethics: On the Promise and Potential of an Intersectional Analysis

This article contributes to current debates and discussions in critical social theory about diversity, inclusion/exclusion, power, and social justice by exploring intersectionality as an important theoretical resource to further develop and advance care ethics. Using intersectionality as a critical reference point, the investigation highlights two key shortcomings of care ethics which stem from this ethics’ prioritization of gender and gendered power relations: inadequate conceptualizations of diversity and power. The article draws on concrete examples related to migrant domestic work to illustrate how an intersectionality lens can advance new theoretical insights for understanding caring practices (or lack of them), and generate new methodological and practical strategies for confronting and transforming the deeply entrenched interlocking power inequities that undermine the realization of care in an increasingly complex context of national and international policy and politics.

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A systematic review of the provision and efficacy of patient and carer information and support (PCIS) interventions for patients with dementia and their informal carers

Background: The NHS dementia strategy identifies patient and carer information and support (PCIS) as a core component of gold-standard dementia care. This is the first systematic review of PCIS, performed to analyse the literature and evidence for these interventions.; Aims: To systematically review literature evaluating the effectiveness of the provision of PCIS for people with dementia and their informal carers, in inpatient and outpatient settings.; Methods: Searches of four online biomedical databases, accessed in September 2018. Studies were selected if they were: relating to people with dementia or their informal carers, based in inpatient or outpatient settings, published in English-language peer-reviewed journals no earlier than the year 2000 and assessed dementia-related information or social support interventions, by measuring qualitative or quantitative carer or patient-reported outcomes. Standardised data extraction and quality appraisal forms were used.; Results: 7 of 43 full-text papers analysed were eligible for analysis. 3 papers were different arms of one original study. Trends were present in the quantitative results towards reduced patient and carer depression and anxiety and the themes in the qualitative analysis were in favour of the intervention.; Conclusions: The studies analysed were too heterogeneous in design, population and outcomes measured to make a conclusive opinion about the efficacy of these interventions. It is surprising that for such a common condition, a gold-standard evidence-based intervention and standardised delivery for provision of PCIS for people living with dementia in the UK does not exist. Further research is therefore vital.

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Missing the Mark: The Complexity of African American Dementia Family Caregiving

Alzheimer's disease and related dementias (ADRDs) have a significant impact on families. Family nurses are in an ideal position to address the needs of families affected by ADRD. However, to be most effective, family nurses and researchers need culturally appropriate theories to guide practice and research. On November 17, 2018, five nurse researchers presented findings of their research with African American families at the Gerontological Society of America's annual meeting. The results reported and the lively discussion that ensued suggested that the current paradigms framing research and practice with African American families affected by ADRD may not be adequate. There is a need to consider culturally congruent, family-centered theories to guide research and practice with this population of families. 

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Mining Social Media Data to Study the Consequences of Dementia Diagnosis on Caregivers and Relatives

Introduction: Caregivers for people with dementia face a number of challenges such as changing family relationships, social isolation, or financial difficulties. Internet usage and social media are increasingly being recognised as resources to increase support and general public health. Objective: Using automated analysis, the aim of this study was to explore (i) the age and sex of people who post to the social media forum Reddit about dementia diagnoses, (ii) the affected person and their diagnosis, (iii) which subreddits authors are posting to, (iv) the types of messages posted, and (v) the content of these posts. Methods: We analysed Reddit posts concerning dementia diagnoses and used a previously developed text analysis pipeline to determine attributes of the posts and their authors. The posts were further examined through manual annotation of the diagnosis provided and the person affected. Lastly, we investigated the communities posters engage with and assessed the contents of the posts with an automated topic gathering/clustering technique. Results: Five hundred and thirty-five Reddit posts were identified as relevant and further processed. The majority of posters in our dataset are females and predominantly close relatives, such as parents and grandparents, are mentioned. The communities frequented and topics gathered reflect not only the person's diagnosis but also potential outcomes, for example hardships experienced by the caregiver or the requirement for legal support. Conclusions: This work demonstrates the value of social media data as a resource for in-depth examination of caregivers' experience after a dementia diagnosis. It is important to study groups actively posting online, both in topic-specific and general communities, as they are most likely to benefit from novel internet-based support systems or interventions.

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Caring as a social determinant of health: review of evidence

Unpaid carers provide critical support for people with health and social care needs. The majority of recipients of unpaid care are older parents or spouses and partners, and changes in the make-up of our population indicate that the number of dependent older people in the UK will increase by 113% by 2051.

Supporting those who provide unpaid care to older people is therefore hugely important, and evidence is needed on how best to do this. The support provided by carers is often physically and emotionally demanding, with consequences for carers’ own health and wellbeing.

In this work, PHE commissioned Newcastle University to:

  • explore the consequences of being an unpaid carer of older people
  • identify evidence about how best to support this group of carers

To address these aims, a rapid review of existing evidence reviews (an ‘umbrella review’) was conducted, alongside analysis of data on carers (for any population) from the NHS England GP Patient Survey. The main findings are:

  • mounting evidence that unpaid caring should be considered a social determinant of health
  • carers experience poor physical and mental health but also have unmet care needs themselves
  • different groups of carers may have different support needs
  • a lack of clear and robust evidence about how best to support people caring for older populations, and gaps in evidence on key outcomes


This report proposes a logic model as a tool for evaluating the impact of carer interventions.

It also includes ‘access enablers’ as important in ensuring that carers are connected with relevant services and interventions on offer. Social prescribing is one of these enablers.

How Many Older Informal Caregivers Are There in Europe? Comparison of Estimates of Their Prevalence from Three European Surveys

Informal caregivers are people providing some type of unpaid, ongoing assistance to a person with a chronic illness or disability. Long-term care measures and policies cannot take place without taking into account the quantitatively crucial role played by informal caregivers. We use the European Health Interview Survey (EHIS), the European Quality of Life Survey (EQLS), and the Study on Health and Ageing in Europe (SHARE) to measure the prevalence of informal caregivers in the European population, and analyze associated socio-demographic factors. This rate ranges between about 13 percent in Portugal and Spain, and more than 22 percent in Luxembourg, Belgium, and Denmark. It declines in older age groups and, on average, is lower in men than in women in all countries studied, and lower among the poorly educated compared to those with higher levels of education. However, large variance was observed in the average share of informal caregivers for most countries between the three surveys. Our findings, estimated through the three surveys, reveal common trends, but also a series of disparities. Additional research will be needed to enable policy makers to access a richer and more harmonized body of data, allowing them to adopt truly evidence-based and targeted policies and interventions in this field.

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Application of treatment fidelity in tailored caregiver interventions

Demonstrations of the effectiveness of interventions requires evidence that the model can be implemented with fidelity. Caregiving interventions that are tailored to the individual or family require flexibility, which adds some challenges to the assessment of fidelity. This paper outlines the components necessary for examining treatment fidelity and common barriers to implementing fidelity studies, offers considerations for designing fidelity studies with tailored caregiver interventions, and aims to provide a set of procedures that can be used to guide future fidelity studies. Case study methods are used to illustrate the processes and findings, drawing on two research studies of fidelity in tailored caregiver interventions. Fidelity studies consist of core components (i.e. training on intervention delivery, adherence to the intervention, therapist competence, acceptability and outcomes) that should be maintained and monitored throughout the study to elucidate the relationship between the intervention and outcomes. These components are applicable to tailored caregiver interventions and can be implemented with the consideration of some key issues that are addressed prior to the evaluation. The two cases presented utilized similar methods to evaluate fidelity of two different tailored caregiver interventions. Treatment fidelity can be assessed for tailored caregiving interventions, which increases confidence about the potency of the active ingredients in the interventions. Standard fidelity guidelines can be implemented with minor additional considerations.

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Ambient assisted living technology-mediated interventions for older people and their informal carers in the context of healthy ageing: A scoping review

Background and Aims: There is a growing demand for health and social care services to provide technology-mediated interventions that promote the health and well-being of older people with health or care needs and of their informal carers. The objectives of this study were to scope and review the nature and extent of prior intervention studies involving ambient assisted living technology-mediated interventions for older people and their informal carers, and how and in what ways (if any) the goals and aims of these interventions reflected the domains of the World Health Organization framework for healthy ageing.; Methods: We conducted a scoping review. Data were collected between June and October 2018 with an updated search in October 2020. A total of 85 articles were eligible for inclusion.; Results: Nine categories described the aims and content of the included studies. The healthy ageing domain "Ability to meet basic needs" was mirrored in four categories, whereas "Ability to contribute to society" was not addressed at all.; Conclusion: The ways in which domains of healthy ageing are mirrored suggest that there is an emphasis on individual factors and individual responsibility, and a lack of attention given to broader, environmental factors affecting healthy ageing. Only a few of the studies used a dyadic approach when assessing health outcomes concerning older people and their informal carers. 

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Acknowledging cancer as a family disease: A systematic review of family care in the cancer setting

Purpose: Family members are a part of the team to improve the outcomes of the person with cancer. Families require support and information to optimise their care, however, their needs are often unacknowledged and within clinical areas there is a lack of family focused interventions. Studies highlight families' needs but lack a family representation. The aim was to explore research with family as the unit-of-care during cancer treatment. Method: The Pickering systematic quantitative literature review method; a 15-step process from searching, database development and analysis was followed. Research published 2008-2019 within databases: MEDLINE, SCOPUS, PsycINFO, Cochrane, CINAHL; key words, 'family* or caregiver*, and cancer*, neoplasm* and coping*, distress* in November 2019. Quality assessment completed using Mixed Methods Appraisal Tool, descriptive quantitative analysis and thematic analysis. Results: Studies involving patients and family members were included in the review (N = 73). The analysis identified participants had a mean age of 58 years and primarily lung, breast or prostate cancer. Over 80% were from America and European countries; 93% had a dyad sample, quantitative studies (76%). There was eight intervention studies between four to sixteen weeks long, focused on family wellbeing. Themes described the impact of cancer on the whole family, the importance of communication between family members, and resources for family members. Conclusion: The review identified four main scales and optimum intervention styles. Family research in the adult cancer needs to focus on intervention studies, increase international focus and inclusion of other family members such as children, friends and older adults.

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Social Determinants of Health: Underreported Heterogeneity in Systematic Reviews of Caregiver Interventions

Although most people have some experience as caregivers, the nature and context of care are highly variable. Caregiving, socioeconomic factors, and health are all interrelated. For these reasons, caregiver interventions must consider these factors. This review examines the degree to which caregiver intervention research has reported and considered social determinants of health.We examined published systematic reviews and meta-analyses of interventions for older adults with age-related chronic conditions using the PRISMA and AMSTAR 2 checklists. From 2,707 papers meeting search criteria, we identified 197 potentially relevant systematic reviews, and selected 33 for the final analysis.We found scant information on the inclusion of social determinants; the papers lacked specificity regarding race/ethnicity, gender, sexual identity, socioeconomic status, and geographic location. The majority of studies focused on dementia, with other conditions common in later life vastly underrepresented.Significant gaps in evidence persist, particularly for interventions targeting diverse conditions and populations. To advance health equity and improve the effectiveness of interventions, research should address caregiver heterogeneity and improve assessment, support, and instruction for diverse populations. Research must identify aspects of heterogeneity that matter in intervention design, while recognizing opportunities for common elements and strategies.

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Five Phases of Dyadic Analysis: Stretching the Boundaries of Understanding of Family Relationships

In the last decade, an increasing number of qualitative studies sought to investigate the dynamics of various dyads by conducting in‐depth, multiple family member interviews. The emphasis in the methodological literature dealing with this type of research is primarily on the data collection process, and much less on the development of methods suitable for the analysis of the data thus derived, especially with regard to dyads consisting of family members belonging to different systems: families of origin or nuclear families. The purpose of this paper is to propose a model for dyadic analysis based on examining the dynamics of the evolving relationships between key caregivers of a family member with brain injury. The model includes inductive and abductive phases of analysis, and it is based on an ecological‐systemic perspective. The benefits of this model are highlighted, and its potential contribution is further discussed. 

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The role and value of family therapy for people living with cancer: a rapid review of recent evidence

Purpose of Review: Cancer impacts the whole family and relational system, not just the individual with the diagnosis. The present article identifies and reviews publications in the field of family therapy and cancer since 2019, to describe the theoretical models and techniques applied, and the outcomes achieved.; Recent Findings: A search of databases and grey literature led to the identification of five articles from four studies. Four papers described primary research and one summarized a case example. Papers were published by teams in the USA, Sweden and Iceland. Each article described the benefits of adopting a family therapy approach on outcomes such as family communication, bereavement and decreased carer burden. Four papers described specialist family therapists delivering the interventions, and one used oncology nurses drawing on the theories and techniques of family therapy.; Summary: The rarity of family therapy publications in the past year reflects the individual-level approach to cancer which permeates both medicine and talking therapies. The utility of family therapy could be further surfaced through more large-scale studies which thoroughly describe the unique theoretical basis and techniques, alongside outcomes for multiple people within the family system.

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Resilience in family caregivers of patients diagnosed with advanced cancer - unravelling the process of bouncing back from difficult experiences, a hermeneutic review

Background: Despite the risk for developing mental disorders, most of advanced cancer patients' family caregivers undergo a resilient process throughout the caregiving period. Research on resilience in caregivers of advanced cancer patients is scarce and further hindered by the lack of a univocal definition and a theoretical framework.; Objectives: To provide clarity on the concept of resilience by proposing an integrative view that can support health care professionals and researchers in conducting and interpreting research on resilience.; Methods: The review process was inspired by the hermeneutic methodology: a cyclic review process, consisting of repeated searching and analysing until data saturation is reached and focussed on achieving a deeper understanding of ill-defined concepts. The definitions from eighteen reviews on resilience and the theoretical frameworks from eight concept analyses were analysed. The composing elements of resilience were listed and compared.; Results: The American Psychological Association's definition of resilience and Bonanno's theoretical framework are suggested to guide further research on resilience. Moreover, four knowledge gaps were uncovered: (1) How do resilience resources interact? (2) What are the key predictors for a resilient trajectory? (3) How do the resilient trajectories evolve across the caregiving period? And (4) how does the patient's nearing death influence the caregiver's resilience?; Conclusion: To address flaws in conceptualisation and the resulting gaps in knowledge, we suggest a definition and a theoretical framework that are suited to allow heterogeneity in the field, but enables the development of sound interventions, as well as facilitate the interpretation of intervention effectiveness.

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Research trends and hotspots in caregiver studies: A bibliometric and scientometric analysis of nursing journals

Aims: To explore the intellectual landscape of care‐giving studies and identify research trends and hotspots in this field. Design: A bibliometric and scientometric analysis of care‐giving literature was undertaken from January ‐ February 2020. Methods: CiteSpace was used to analyse research published between 1900 ‐ 2019. A references‐based co‐citation analysis was used to identify the intellectual landscape of care‐giving research. A keywords‐based co‐occurrence analysis with citation bursts was used to explore research hotspots and frontiers. Lastly, a co‐authorship network analysis was used to identify co‐operation among authors, countries, and institutions. Results: There has been an increasing trend in the number of publications on care‐giving research with light fluctuations. Relevant literature mainly focused on the fields of oncology and psychiatry. The keywords‐based analysis indicated that the main research targets had previously been informal caregivers of patients with stroke, Alzheimer's disease, and schizophrenia. In recent years, focus has shifted onto informal caregivers of patients with cancer, heart failure, and those at end‐of‐life. Conclusion: This bibliometric and scientometric analysis helps us understand the current state of caregiver research and its recent developments. Impact: Caregivers' mental health and care experience have become research hotspots. Where and on whom will the research have an impact?: This research allows the development of future research on care‐giving.Future researchers should explore effective interventions for the health of patient–caregiver dyads.

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Informal carers and peer support in pulmonary rehabilitation: an underutilized resource?

Purpose of Review: The aim of this review is to discuss the recent literature relating to the involvement of informal carers and peer support in pulmonary rehabilitation.; Recent Findings: Informal carers and peer support have been identified by both patients and healthcare workers as a crucial component in the care of those with chronic respiratory disease at home. Pulmonary rehabilitation, a cornerstone in the management of patients with breathlessness, is limited in its clinical effectiveness by poor referral, uptake and completion rates. Engagement of informal carers and support from peers may help maximize the utilization of pulmonary rehabilitation.; Summary: This review highlights the need for more good-quality randomized controlled trials in identifying suitable interventions that may increase uptake and completion of pulmonary rehabilitation programmes. Qualitative studies have highlighted the potential for informal carers and peer support to play a key role in the design of research programmes, and in the delivery of pulmonary rehabilitation. This needs to be addressed in future research.

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Inclusion of Carer Health-Related Quality of Life in National Institute for Health and Care Excellence Appraisals

Objectives: Health interventions for patients can have effects on their carers too. For consistency, decision makers may wish to specify whether carer outcomes should be included. One example is the National Institute for Health and Care Excellence (NICE), whose reference case specifies that economic evaluations should include direct health effects for patients and carers where relevant. We aimed to review the methods used in including carer health-related quality of life (HRQL) in NICE appraisals. Methods: We reviewed all published technology appraisals (TAs) and highly specialized technologies (HSTs) to identify those that included carer HRQL and discussed the methods and data sources. Results: Twelve of 414 TAs (3%) and 4 of 8 HSTs (50%) included carer HRQL in cost-utility analyses. Eight were for multiple sclerosis, the remainder were each in a unique disease area. Twelve of the 16 appraisals modeled carer HRQL as a function of the patient's health state, 3 modeled carer HRQL as a function of the patient's treatment, and 1 included family quality-adjusted life year (QALY) loss. They used 5 source studies: 2 compared carer EQ-5D scores with controls, 2 measured carer utility only (1 health utilities index and 1 EQ-5D), and 1 estimated family QALY loss from a child's death. Two used disutility estimates not from the literature. Including carer HRQL increased the incremental QALYs and decreased incremental cost-effectiveness ratios in all cases. Conclusions: The inclusion of carer HRQL in NICE appraisals is relatively uncommon and has been limited by data availability.

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An Exploratory Study of the Research on Caregiver Depression: Using Bibliometrics and LDA Topic Modeling

Purpose: The purpose of this paper is to provide readers with a comprehensive overview of scholarly work on the depression of caregivers using bibliometrics and text mining. Methods: A total of 426 articles published between 2000 and 2018 were retrieved from the Clarivate Analytics Web of Science, and then, computer-aided bibliometric analysis as well as Latent Dirichlet Allocation (LDA) topic modeling were conducted on the collection of the data. Results: Descriptive statistics on the increasing number of publications, network analysis of scientific collaboration between countries, word co-occurrence analysis, conceptual structure, and six latent topics (k = 6) identified are discussed. Conclusions: Preventing or managing depression among caregivers is a growing field with the highest priority for the aging population. In the future, collaborating between countries and reflecting cultural backgrounds in caregiver depression research are needed. This study is expected to contribute to the field of psychological distress of caregivers in looking a big picture of the current position through data-driven analysis and moving forward towards a better direction. 

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Dementia Caregiving Research: Expanding and Reframing the Lens of Diversity, Inclusivity, and Intersectionality

This forum expands and reframes the lens of dementia caregiving research among diverse racial and ethnic groups to better understand the unique needs, stressors, and strengths of multicultural and racial-ethnic family caregivers in the United States. By providing more diverse and inclusive knowledge on caregiving to older adults in the United States, we can create a new path forward with regards to caregiving research. Throughout the article, major questions and answers are supported by critiquing some of the caregiving literature. Discussions are provided to help create inclusive ways of conceptualizing caregiving research and using methodological approaches to reflect the diversity of caregivers and care recipients in the United States. Expanding and reframing the conceptual and methodological lens of diversity, inclusivity and intersectionality can provide evidence to support effective policy, practice, and care in addressing the needs of diverse groups of caregivers and older adults living with dementia. 

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Balancing dementia family carers' rights to online supports with the rights of people with dementia to absolute privacy

In its mission to protect the personal data of European Union (EU) citizens, the reach of the General Data Protection Regulation (GDPR) extends into the research activities traditionally supervised and approved by university institutional review and ethics boards. This article discusses how transnational research for an online support intervention for family carers of people with dementia was obstructed by a particularly restrictive interpretation of the 2018 GDPR. Contested issues discussed include privacy, consent, the balance between risks and benefits, and the rights of family carers.

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Achieving Health Equity in Embedded Pragmatic Trials for People Living with Dementia and Their Family Caregivers

Embedded pragmatic clinical trials (ePCTs) advance research on Alzheimer's disease/Alzheimer's disease and related dementias (AD/ADRD) in real‐world contexts; however, health equity issues have not yet been fully considered, assessed, or integrated into ePCT designs. Health disparity populations may not be well represented in ePCTs without special efforts to identify and successfully recruit sites of care that serve larger numbers of these populations. The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's disease (AD) and AD‐Related Dementias (AD/ADRD) Clinical Trials (IMPACT) Collaboratory's Health Equity Team will contribute to the overall mission of the collaboratory by developing and implementing strategies to address health equity in the conduct of ePCTs and ensure the collaboratory is a national resource for all Americans with dementia. As a first step toward meeting these goals, this article reviews what is currently known about the inclusion of health disparities populations of people living with dementia (PLWD) and their caregivers in ePCTs, highlights unique challenges related to health equity in the conduct of ePCTs, and suggests priority areas in the design and implementation of ePCTs to increase the awareness and avoidance of pitfalls that may perpetuate and magnify healthcare disparities. 

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Approaches to and outcomes of future planning for family carers of adults with an intellectual disability: A systematic review

Background People with intellectual disabilities are living longer, with family homes and family caregivers increasingly identified as a key support to this ageing population of people with intellectual disabilities. Method This systematic review sets out existing evidence from empirically evaluated intervention studies of future care planning for adults with intellectual disability by family carers. Results This systematic review identified a scarcity of systematic approaches to future care planning for adults with intellectual disabilities and their family carers. However, evidence from the review suggests positive outcomes for families once they engage in a future planning process. Conclusions Contemporary social policy orientation, which emphasizes reliance on families to provide care, along with an ageing population of people with intellectual disabilities, and diminishing caring capacity within family networks, suggests an urgent need for a more expansive research base that evaluates approaches to supporting adults with intellectual disabilities and their family carers to plan for their futures.

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

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

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Spousal Caregiving in Community Settings in Canada: Implications for Nursing Professionals

Objective: Spousal caregivers report significantly more health effects and psychological consequences than caregivers of aging parents. Traditional approaches to assist these caregivers often include lifestyle approaches with a lack of health promotion initiatives. Consequently, alternative approaches to facilitate the adaptation to the social context of spousal caregivers' experiences are needed. Method: This article systematically reviewed literature on spousal caregiving in Canada using a health promotion approach. Nine peer reviewed articles were identified from the health and social care literature and critically analyzed for relevant themes. Results: Gender, social support, health care, and income emerged as themes in the literature published to date. Discussion: The article concludes with directions for future research in Canada and suggested solutions for family nursing practice.

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Centering and Embedding Family Carers in the Co-Production of Carer Research, Supports and Policy

Project aims: 

Underpinned by an engaged research approach, CARERENGAGE has an overall aim to coproduce in-depth, practically-oriented knowledge and evidence-based research impacting family carers in Ireland. Specifically, this will involve Institute of Social Science in the 21st Century UCC (ISS21) and Care Alliance Ireland (CAI) facilitating and delivering three national workshops addressing three key research and policy areas identified by CAI, in consultation with its 85 CVO members.

This aim is supported by the following action-specific objectives:

  1. Develop a CVO-academic-policy-citizen-carer-service provider knowledge network to support family carers’ capacity to make informed decisions and achieve policy goals

  2. Co-facilitate three national workshops to encourage knowledge exchange and coproduction dialogue between network members to bridge the gap between research, policy, practice and family carer requirements.

  3. Co-develop, communicate and translate policy, academic, CVO provider, recommendations to maximise the value and impact of family carer research. 

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Carers’ motivations for, and experiences of, participating in suicide research

(1) Background: First-hand accounts of lived experience of suicide remain rare in the research literature. Increasing interest in the lived experience of suicide is resulting in more opportunities for people to participate in research based on their personal experience. How individuals choose to participate in research, and their experience of doing so, are important considerations in the ethical conduct of research. (2) Methods: To understand the experience of providing care for someone who has previously attempted suicide, a cross-sectional online community survey was conducted. This survey concluded with questions regarding motivation to participate and the experience of doing so. Of the 758 individuals who participated in the survey, 545 provided open-ended text responses to questions regarding motivation and 523 did so for questions regarding the experience of participating. It is these responses that are the focus of this paper. Data were analysed thematically. (3) Results: Motivations to participate were expressed as primarily altruistic in nature, with a future focus on improving the experience of the person who had attempted suicide alongside carers to ease distress. The experience of participating was difficult yet manageable, for all but a few participants. (4) Conclusions: With the increasing interest in first-hand accounts of suicide, how individuals experience participation in research is an important focus that requires further attention. 

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Caregiver Burden in Multiple Sclerosis: Recent Trends and Future Directions

Purpose of Review: In spite of recent advances in treatment, many people with multiple sclerosis (MS) require ongoing care and support. Informal caregivers can experience burden as a result of their role, with possible implications for quality of life (QOL). We review recent research examining MS caregiver experience to (1) understand current risk factors for caregiver burden and (2) identify possible strategies for increasing carer well-being. Recent Findings: MS caregiver experience is highly variable and can be predicted by a variety of care recipient, caregiver and contextual factors. Burden is not the only characteristic associated with care, with positive consequences also reported. Emerging research suggests a number of ways in which carers can be better supported. Summary: Identifying and meeting the needs of MS caregivers offers the best way of delivering tailored support. Future research should focus on the development of psychosocial supports, while acknowledging the needs of those caring for different MS patient populations.

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Technology and Caregiving: Emerging Interventions and Directions for Research

An array of technology-based interventions has increasingly become available to support family caregivers, primarily focusing on health and well-being, social isolation, financial, and psychological support. More recently the emergence of new technologies such as mobile and cloud, robotics, connected sensors, virtual/augmented/mixed reality, voice, and the evermore ubiquitous tools supported by advanced data analytics, coupled with the integration of multiple technologies through platform solutions, have opened a new era of technology-enabled interventions that can empower and support family caregivers. This paper proposes a conceptual framework for identifying and addressing the challenges that may need to be overcome to effectively apply technology-enabled solutions for family caregivers. The paper identifies a number of challenges that either moderate or mediate the full use of technologies for the benefit of caregivers. The challenges include issues related to equity, inclusion, and access; ethical concerns related to privacy and security; political and regulatory factors affecting interoperability and lack of standards; inclusive/human-centric design and issues; and inherent economic and distribution channel difficulties. The paper concludes with a summary of research questions and issues that form a framework for global research priorities.

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Research Priorities in Family Caregiving: Process and Outcomes of a Conference on Family-Centered Care Across the Trajectory of Serious Illness

The number of older adults living with functional decline and serious illness is growing exponentially at a time when availability of both family and professional caregivers is strained. Achieving optimal outcomes for this vulnerable population involves advancing the knowledge needed to improve the quality of care delivered by families, health professionals, and community programs. Recent reports from National Institute of Health and the National Academy of Science, Engineering and Medicine have called for the identification of gaps in key areas of family caregiving intervention research. In March 2018, the Family Caregiving Institute at UC Davis convened an invitational meeting of over 50 thought leaders in family caregiving-representing service agencies, funding organizations, and academia-to participate in the Research Priorities in Caregiving Summit: Advancing Family-Centered Care across the Trajectory of Serious Illness. Using an iterative process, attendees identified the top 10 research priorities and created research priority statements that incorporated a definition of the priority topic, rationale for the priority; problem(s) to address; priority population(s); and example research topics. The research priority statements serve as a roadmap for research development that will address the most significant gaps in the caregiving field.

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Cost–Utility Analyses of Interventions for Informal Carers: A Systematic and Critical Review

Background: Demographic and epidemiological changes place an increasing reliance on informal carers. Some support programmes exist, but funding is often limited. There is a need for economic evaluation of interventions for carers to assist policymakers in prioritizing carer support. Objective: Our aim was to systematically review and critically appraise cost–utility analyses of interventions for informal carers, in order to assess the methods employed and the quality of the reporting. Methods: A systematic review of databases was conducted using MEDLINE, Embase, PsycINFO, and EconLit of items published between 1950 and February 2019. Published studies were selected if they involved a cost–utility analysis of an intervention mainly or jointly targeting informal carers. The reporting quality of economic analyses was evaluated using the Consolidated Health Economic Evaluation Reporting Standards (CHEERS) statement. Results: An initial set of 1364 potentially relevant studies was identified. The titles and the abstracts were then screened, resulting in the identification of 62 full-text articles that warranted further assessment of their eligibility. Of these, 20 economic evaluations of informal carer interventions met the inclusion criteria. The main geographical area was the UK (n = 11). These studies were conducted in mental and/or behavioural (n = 15), cardiovascular (n = 3) or cancer (n = 2) clinical fields. These cost–utility analyses were based on randomized clinical trials (n = 16) and on observational studies (n = 4), of which only one presented a Markov model-based economic evaluation. Four of the six psychological interventions were deemed to be cost effective versus two of the four education/support interventions, and four of the nine training/support interventions. Two articles achieved a CHEERS score of 100% and nine of the economic evaluations achieved a score of 85% in terms of the CHEERS criteria for high-quality economic studies. Conclusions: Our critical review highlights the lack of cost–utility analyses of interventions to support informal carers. However, it also shows the relative prominence of good reporting practices in these analyses that other studies might be able to build on. 

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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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Where are the family caregivers? Finding family caregiver-related content in foundational nursing documents

Informal or family caregivers are a substantial component of the U.S. health care system and are essential for addressing the needs of a growing number of U.S. citizens who are aging, managing chronic or disabling conditions, or facing life-limiting illness. The purpose of this study was to examine the representation of family caregiving in a set of foundational documents that shape nursing education, practice standard, and related policy. Electronic copies of these "canonical" documents were systematically mapped for the appearance of language, terms, and concepts related to family caregiving. Additionally, relevant passages of caregiving-related text were coded for content, phrasing, and meaning. Few meaningful references were found, exposing how the nursing profession may also be perpetuating the role of the family caregiver as unsupported and invisible. When present in the documents, family caregivers were generally situated as background or context for patient care, often as objects and less frequently as agents with influence. These findings are considered within the context of the emerging caregiving public health crisis and family caregiver health outcomes, family caregiver integration into the health care team, nursing education and practice standards, nursing leadership and workforce development, and nursing's policy advocacy role.

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Caregiving in Heart Failure

Heart failure (HF) affects the lives of patients as well as their family members, who are a fundamental source of support for patients. During the last 2 decades, researchers have increasingly given attention to caregivers of patients with HF worldwide. In 2014, the National Institute of Nursing Research addressed the significance of the science of caregiving. Since then, each year about 100 articles related to caregiving in HF have been published by researchers worldwide. Here, Chung talks about the gaps in caregiving science in HF globally. In the science of caregiving in HF, one primary focus of researchers is accumulating evidence about how caregivers contribute to the outcomes of patients with HF. The contribution of family caregivers is evident in improving patient HF management by supporting direct and indirect self-care activities and improving clinical outcomes, including educing readmission and mortality for patients with HF. There is a growing literature on the science of caregiving worldwide, but there are still gaps that must be addressed for improvement in research in caregiving in HF.

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Recovering together: Building resiliency in dyads of stroke patients and their caregivers at risk for chronic emotional distress; A feasibility study

Background: A stroke is a sudden, life-altering event with potentially devastating consequences for survivors and their loved ones. Despite advances in endovascular and neurocritical care approaches to stroke treatment and recovery, there remains a considerable unmet need for interventions targeting the emotional impact of stroke for both patients and their informal caregivers. This is important because untreated emotional distress becomes chronic and negatively impacts quality of life in both patients and caregivers. Our team previously used mixed methods to iteratively develop a six-session modular dyadic intervention to prevent chronic emotional distress in patients with stroke and their informal caregivers called "Recovering Together" (RT) using feedback from dyads and the medical team. The aim of the current study is to test the feasibility of recruitment, acceptability of screening and randomization methods, acceptability of RT, satisfaction with RT, feasibility of the assessment process at all time points, and acceptability of outcome measures. Secondarily, we aimed to explore within-treatment effect sizes and change in clinically significant symptoms of depression, anxiety, and post-traumatic stress (PTS). The larger goal was to strengthen methodological rigor before a subsequent efficacy trial. Methods: We conducted a feasibility randomized controlled trial to evaluate the RT intervention relative to minimally enhanced usual care (MEUC) in stroke patients admitted to a Neurosciences Intensive Care Unit (Neuro-ICU). Dyads were enrolled within 1 week of hospitalization if they met specific eligibility criteria. Assessments were done via paper and pencil at baseline, and electronically via REDCap or over the phone at post-intervention (approximately 6 weeks after baseline), and 3 months later. Assessments included demographics, resiliency intervention targets (mindfulness, coping, self-efficacy, and interpersonal bond), and emotional distress (depression, anxiety, and PTS). Primary outcomes were feasibility and acceptability markers. Secondary outcomes were depression, anxiety, PTS, mindfulness, coping, self-efficacy, and interpersonal bond. Results: We consented 20 dyads, enrolled 17, and retained 16. Although many patients were missed before we could approach them, very few declined to participate or dropped out once study staff made initial contact. Feasibility of enrollment (87% of eligible dyads enrolled), acceptability of screening, and randomization (all RT dyads retained after randomization) were excellent. Program satisfaction (RT post-test M = 11.33/12 for patients M = 12/12 for caregivers), and adherence to treatment sessions (six of seven RT dyads attending 4/6 sessions) were high. There were no technical difficulties that affected the delivery of the intervention. There was minimal missing data. For both patients and caregivers, participation in RT was generally associated with clinically significant improvement in emotional distress symptoms from baseline to post-test. Participation in MEUC was associated with clinically significant worsening in emotional distress. Although some of the improvement in emotional distress symptoms decreased in the RT group between post-test to 3 months, these changes were not clinically significant. RT was also associated with substantial decrease in frequency of individuals who met criteria for clinically significant symptoms, while the opposite was true for MEUC. There were many lessons that informed current and future research. Conclusions: This study provided evidence of feasibility and signal of improvement in RT, as well as necessary methodological changes to increase recruitment efficiency before the future hybrid efficacy-effectiveness trial. Trial registration: NCT02797509. © 2020 The Author(s).

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Research on the health of and interventions for family caregivers of people with dementia: a bibliometric analysis of research output during 1988-2018

Background: Dementia is a serious and growing health problem, and since most people with dementia live at home, caring responsibilities generally fall on family members. Caregivers are often inadequately supported by formal health services and have poorer psychological and physical health. Our study aimed to compare the contributions of publications from different countries, institutions and authors and present a bibliometric analysis to determine the hotspots and trends in research concerning the health of and interventions for family dementia caregivers.; Methods: Studies published during 1988-2018 were extracted from the Science Citation Index Expanded of the Web of Science. Each abstract of publications was evaluated to obtain the basic information. A bibliometric analysis was used to evaluate the number or cooperation networks of publications, countries, institutions, journals, citations, authors, references, and keywords. The resulting articles were analyzed descriptively, and the publication keywords were visualized using VOSviewer.; Results: Five hundred forty-two articles were identified. The annual number of relevant publications has steadily increased since approximately 2006. The USA has the highest number of publications (36.2%), followed by the UK (12.9%). China entered the field late, but research conducted in China has rapidly developed. The most productive institution, journal, and author in this field are University College London, the Journal of the American Geriatrics Society, and Orrell M from the UK, respectively. A co-occurrence analysis of the keywords reveals a mainstream research focus on burden, depression, quality of life, and corresponding interventions for people with dementia caregivers. The keywords "psychosocial intervention", "long-term", "e-learning/online", "communication", and "qualitative research" reflect the latest hotspots, appearing in approximately 2017-2018.; Conclusion: Our study details the performance statistics, main topics and trends research on the health of and interventions for dementia caregivers from 1988 to 2018 and provides a comprehensive analysis.

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Interventions to enhance access to and utilization of formal community care services for home dwelling persons with dementia and their informal carers. A scoping review

Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services. Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use. Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes. Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field.

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Family Caregiving for Older Adults

Family members are the primary source of support for older adults with chronic illness and disability. Thousands of published empirical studies and dozens of reviews have documented the psychological and physical health effects of caregiving, identified caregivers at risk for adverse outcomes, and evaluated a wide range of intervention strategies to support caregivers. Caregiving as chronic stress exposure is the conceptual driver for much of this research. We review and synthesize the literature on the impact of caregiving and intervention strategies for supporting caregivers. The impact of caregiving is highly variable, driven largely by the intensity of care provided and the suffering of the care recipient. The intervention literature is littered with many failures and some successes. Successful interventions address both the pragmatics of care and the emotional toll of caregiving. We conclude with both research and policy recommendations that address a national agenda for caregiving.

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Supporting family caregiver engagement in the care of old persons living in hard to reach communities: A scoping review

Today, 8.5% of the world's population is 65 and over, and this statistic will reach 17% by 2050 (He et al., U.S. Census Bureau, international population reports, P95/16‐1, An ageing world: 2015, U.S., 2016). They are the people who, with increasing age, will find themselves more closely interfacing with the national health system, which in many countries shows strong imbalances between rural and urban areas. In this context, a fundamental role is played by the relatives who find themselves becoming informal caregivers to compensate for lack of services. To date, however, little has been done to help these people. In this article, we want to identify the nature and extent of research evidence that had its objective to help informal caregivers in rural, hard to reach areas (Grant & Booth, Health Information & Libraries Journal, 2009, 26, 91). Following the approach set out by Arksey and O'Malley (International Journal of Social Research Methodology, 2005, 8, 19), we conducted a scoping review in May 2018 and closed the review with an update in September 2018. We identified 14 studies published from 2012, the European Year of Active Ageing, promoted by the European Commission, which had three domains of implementation: emotional support to decrease the emotional burden of caregivers, educational support to increase their skills, and organisational support to improve the mobility of caregivers and carereceivers. Although informal caregivers play a fundamental role in many countries, the studies that have been involved in alleviating their caring burden are few; nevertheless, they provide interesting indications. This lack of attention confirms how this portion of the population is still neglected by scientific research and risks having unequal access to health and social care. Future research is needed, not only to create and improve services to caregivers in rural, hard to reach areas, but also to evaluate and focus on the participation and the engagement of caregivers in the co‐design of these services. 

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A Conceptual-Theoretical-Empirical Structure for the Study of Alzheimer Informal Caregivers and Home Health Care Nursing Services

The purpose of this article is to describe the process used to create a conceptual-theoretical-empirical structure for a proposed study of policies for home health care nursing services for informal caregivers of persons with Alzheimer disease. The process consisted of linkage of the Conceptual Model of Nursing and Health Policy with Roy's Adaptation Model to guide derivation of a middle-range theory of home health care nursing services for Alzheimer disease informal caregiving, and selection of appropriate empirical research methods.

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Psychological interventions targeting partners of cancer patients: A systematic review

Purpose: Cancer patients' intimate partners often experience levels of psychological burden that are comparable to or even exceed that of the patients, making it imperative that they too be provided with appropriate psychological support. This review aimed to present the content and the effects of interventions delivered to caregiving partners of cancer patients on both partners and patients. Furthermore, we provide information about the acceptability of the interventions and study quality. Methods: An initial search in Web of Science, PsycINFO, and PubMed databases was conducted. We included RCTs as well as pre-post studies that focused on enhancing partners' wellbeing or diminishing partners' distress. To be included, interventions had to have been offered to partners either only or predominantly. We included studies published until December 2017. The methodological quality of the trials was assessed with the EPHPP assessment tool. Results: Nine studies met the inclusion criteria. Intervention topics included social support, short-term problem solving, the marital relationship quality, role expectations, emotional resilience, and coping strategies. Positive intervention effects were found with regard to social support, emotional distress, improved communication, posttraumatic growth, self-efficacy, and coping. Despite considerably low response rates, the interventions were generally well accepted. Most of the studies suffer limitations because of methodological flaws, the lack of randomization, and small sample sizes. Conclusion: Interventions delivered to partners of cancer patients may have positive effects on both partners and patients. We derive several implications for future research: Intervention programs should be tailored to the specific needs of caregiving partners with regard to the cancer trajectory and gender. Effort has to be made to increase sample sizes as well as to include particularly burdened individuals. Selected measurement instruments should be sensitive to specific intervention effects. Finally, information on both statistical as well as clinical relevance of research findings should be provided.

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eHealth interventions to support caregivers of people with dementia may be proven effective, but are they implementation-ready?

Objectives: A variety of health services delivered via the Internet, or “eHealth interventions,” to support caregivers of people with dementia have shown evidence of effectiveness, but only a small number are put into practice. This study aimed to investigate whether, how and why their implementation took place. Methods: This qualitative study followed up on the 12 publications included in Boots et al.'s (2014) widely cited systematic review on eHealth interventions for informal caregivers of people with dementia, in order to explore further implementation into practice. Publicly available online information, implementation readiness (ImpRess checklist scores), and survey responses were assessed. Findings: Two interventions were freely available online, two were available in a trial context, and one was exclusively available to clinical staff previously involved in the research project. The remaining seven were unavailable. All scores on the ImpRess checklist were at 50% or lower of the total, indicating that the interventions were not ready to implement at the time of the Boots et al. (2014) review, though some interventions were scored as more implementation-ready in subsequent follow-up publications. Responses to the survey were received from six out of twelve authors. Key learnings from the survey included the importance of the involvement of stakeholders at all stages of the process, as well as the flexible adaptation and commercialization of the intervention. Conclusions: In general, low levels of implementation readiness were reported and often the information necessary to assess implementation readiness was unavailable. The only two freely available interventions had long-term funding from aging foundations. Authors pointed to the involvement of financial gatekeepers in the development process and the creation of a business model early on as important facilitators to implementation. Future research should focus on the factors enabling sustainable implementation.

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Compelling Results That a Problem-Solving Intervention Improves Hospice Family Caregiver Outcomes

This editorial comments on the article: Demiris, G., Oliver, D.P., Washington, K. and Pike, K. (2019), A Problem‐Solving Intervention for Hospice Family Caregivers: A Randomized Clinical Trial. J Am Geriatr Soc, 67: 1345-1352. doi:10.1111/jgs.15894

Hospice researchers Demiris, Parker Oliver, Washington, and Pike should be commended for their recent successful clinical trial evaluating the Problem‐Solving Intervention to Support Caregivers in End‐of‐Life Care Settings (PISCES) intervention, published in this issue of JAGS.8 The 4‐year study fills a substantial gap in the knowledge base by conducting a rigorous randomized trial within the challenging hospice care environment to demonstrate the efficacy of a brief, pragmatic problem‐solving intervention to support informal caregivers.

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

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

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

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

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

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The Future of Caregiver Efficacy Research: Commentary on “Long-Term Outcomes of the Benefit-Finding Group Intervention for Alzheimer Family Caregivers”

Successful caregiver interventions accomplish two goals. One, they address the pragmatics of care provision by educating caregivers about the illness of the care recipient, associated symptoms and their progression, and available support services. Didactic training is often paired with skills training to address the needs of the care recipient, including how to assist with functional disabilities, mange problematic behaviors, and access professional support services. Two, they facilitate caregivers’ ability to cope with the emotional challenges of caregiving inherent in watching a loved one suffer and decline, with little or no ability to mitigate the conditions that lead to suffering...

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Consumer and carer leadership in palliative care academia and practice: A systematic review with narrative synthesis

Background: Contemporary health policies call for consumers to be part of all aspects of service planning, implementation, delivery and evaluation. The extent to which consumers are part of the systemic decision-making levels of palliative care appears to vary between and within services and organisations. Aim: The aim of this systematic review is to develop understandings about consumer and carer leadership in palliative care. Design: A systematic, narrative synthesis approach was adopted due to the heterogeneity of included studies. The review was registered on PROSPERO prospectively (PROSPERO 2018 CRD42018111625). Data sources: PubMed, Scopus and PsycINFO were searched for all studies published in English specifically focusing on consumers’ leadership in palliative care organisations and systems. Articles were appraised for quality using a modified JBI-QARI tool. Results: Eleven studies met the inclusion criteria and quality assessment. Consumers are currently involved in leadership of palliative care teaching, research and services. Findings highlight the benefits of consumer leadership in palliative care including more relevant, higher-quality services, teaching and research. Across the included studies, it was not clear the extent to which consumer leaders had influence in relation to setting agendas across the palliative care sector. Conclusion: The findings suggest that more could be done to support consumer leadership within palliative care. Academics and clinicians might improve the relevance of their work if they are able to more meaningfully partner with consumers in systemic roles in palliative 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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Psychosocial interventions for informal caregivers of people living with cancer

Background Increasingly, people who are not health professionals provide care for a partner, family member or friend affected by cancer, which can have negative effects on their health and well‐being. Psychosocial interventions that comprise psychological or social support and involve direct interaction between a healthcare professional and caregivers (or caregiver‐patient pairs) may help to address the negative health effects for caregivers. Review question What is the effectiveness of psychosocial interventions compared to usual care for informal caregivers of people living with cancer on a range of outcomes related to health and well‐being?  Results We found19 trials that compared psychosocial interventions with usual care, in studies that included almost four thousand participants. Studies included caregivers of people affected by different cancers across all stages of the disease. There were differences in intervention make‐up. Intervention examples include providing information and/or teaching caregivers (or caregiver‐patient pairs) coping, communication or problem‐solving skills to manage symptoms or improve relationships. Interventions were delivered by nurses, psychologists or other professionals on an outpatient basis or at home via telephone. There may be a minimal benefit for caregiver quality‐of‐life immediately after the intervention, but this may not last. Psychosocial interventions may have little to no effect on quality of life for patients six to 12 months post‐intervention, but we are uncertain whether or not interventions improve quality of life for patients immediately post‐intervention. Psychosocial interventions may have little to no effect on caregiver depression, anxiety, distress and physical health and patient anxiety and distress at any time after the intervention, or on patient depression immediately and patient physical health six to 12 months post‐intervention. Psychosocial interventions probably have little to no effect on patient physical health immediately post‐intervention or patient depression three to six months post‐intervention. Three studies reported adverse effects including increased distress and sexual function‐related distress and lower relationship satisfaction levels for carers, increased distress levels for patients, and intervention content that was seen as inappropriate for some participants. No studies looked at cost‐effectiveness or intervention satisfaction for caregivers or patients. Because the quality of evidence was low generally, findings must be treated with caution. Conclusion Psychosocial interventions do not impact to a clinically meaningful degree outcomes for caregivers irrespective of patient cancer stage or type. Perhaps, other outcomes (e.g. relationship quality) or other psychosocial interventions (e.g. meditation) may be more helpful for caregivers. Interventions should be subjected to better conducted trials. Intervention development should involve caregivers and pay particular attention to individual personal needs.

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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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Family Caregiving for Cancer Patients: the State of the Literature and a Direction for Research to Link the Informal and Formal Care Systems to improve Quality and Outcomes

Objectives: Based on recent shifts in reimbursement for cancer treatment from fee-for-service to bundled and value-based payment, this concluding article summarizes data from these papers and the large body of literature on caregiving to suggest how caregiving research might be redirected to link the formal with the informal systems to achieve higher-quality and lower-cost care. Caregiver dyads, the tasks of care, and strategies for training are presented.; Data Sources: Articles in this issue of Seminars in Oncology Nursing, the larger body of caregiving literature, and the Oncology Care Model driving bundled payments and value-based care.; Conclusion: Research on informal caregiving for cancer patients should begin to reframe the rich body of evidence available toward a focus on caregivers reactions to the tasks of care, the training necessary for caregivers to perform them, and how each contributes to quality care at lower costs and appropriate outcomes given patients' stage of disease and goals of treatment.; Implications For Nursing Practice: Oncology systems must take a more active role in including patients and their families as partners to manage treatments and side effects to achieve the best possible patient outcomes. They must be able to evaluate the patient and the caregiver to determine what tasks they will be able to perform, and then make sure they have the training and resources to carry out those tasks. Training could be done by social media and through communication using patient portals that could be expanded through the electronic medical records to include caregiver portals, enabling caregiver questions and reports of patients' conditions.

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Interventions to help support caregivers of people with a brain or spinal cord tumour

Background: The diagnosis and treatment of a brain or spinal cord tumour can have a huge impact on the lives of patients and their families with family caregiving often resulting in considerable burden and distress. Meeting the support needs of family caregivers is critical to maintain their emotional and physical health. Although support for caregivers is becoming more widely available, large-scale implementation is hindered by a lack of high-quality evidence for its effectiveness in the neuro-oncology caregiver population.; Objectives: To assess the effectiveness of supportive interventions at improving the well-being of caregivers of people with a brain or spinal cord tumour. To assess the effects of supportive interventions for caregivers in improving the physical and emotional well-being of people with a brain or spinal cord tumour and to evaluate the health economic benefits of supportive interventions for caregivers.; Search Methods: We searched the Cochrane Central Register of Controlled Trials (CENTRAL; 2018, Issue 7), MEDLINE via Ovid, and Embase via Ovid. We also handsearched relevant published conference abstracts (previous five years), publications in the two main journals in the field (previous year), searched for ongoing trials via, and contacted research groups in the field. The initial search was in March 2017 with an update in August 2018 (handsearches completed in January 2019).; Selection Criteria: We included all randomised controlled trials (RCTs) where caregivers of neuro-oncology patients constituted more than 20% of the sample and which evaluated changes in caregiver well-being following any supportive intervention.; Data Collection and Analysis: Two review authors independently selected studies and carried out risk of bias assessments. We aimed to extract data on the outcomes of psychological distress, burden, mastery, quality of patient-caregiver relationship, quality of life, and physical functioning.; Main Results: In total, the search identified 2102 records, of which we reviewed 144 in full text. We included eight studies. Four interventions focused on patient-caregiver dyads and four were aimed specifically at the caregiver. Heterogeneity of populations and methodologies precluded meta-analysis. Risk of bias varied, and all studies included only small numbers of neuro-oncology caregivers (13 to 56 participants). There was some evidence for positive effects of caregiver support on psychological distress, mastery, and quality of life (low to very low certainty of evidence). No studies reported significant effects on caregiver burden or quality of patient-caregiver relationship (low to very low certainty of evidence). None of the studies assessed caregiver physical functioning. For secondary outcomes (patient emotional or physical well-being; health economic effects), we found very little to no evidence for the effectiveness of caregiver support. We identified five ongoing trials.; Authors' Conclusions: The eight small-scale studies included employed different methodologies across different populations, with low certainty of evidence overall. It is not currently possible to draw reliable conclusions regarding the effectiveness of supportive interventions aimed at improving neuro-oncology caregiver well-being. More high-quality research is needed on support for family caregivers of people diagnosed, and living, with a brain or spinal cord tumour.

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Young Carers Research, Practice and Policy: An Overview and Critical Perspective on Possible Future Directions

Many children, adolescents, teenagers, and young adults have caring responsibilities for parents and family members. These young carers and young adult carers are present in every country. Their responsibilities include domestic chores as well as intimate personal care and other forms of helping which are generally seen as the responsibility of adult professionals. First, this article provides an overview and critical perspective on young carers research. Research suggests that 2–8% of children and young people are carers and that the caring role has an impact on their education, health, wellbeing, social opportunities and employment prospects. Various countries have responded differently with regards to policy: some have well developed services and recognition in law whilst others are only just beginning to recognise the problem. Second, we discuss the issues and challenges for research and propose a new agenda for the development of policy, research rigour, more theoretical sophistication, and a greater awareness of the need for interdisciplinary and multiagency working. Furthermore, we call for participatory and action led research that can provide greater insights into the lived experiences of young people, their needs and how these can be met.

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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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Claiming rights: the future for carers and the need for a radical imagining


In this article, we explore the socio-political chasm that divides recognition and rights. Our focus is the Australian policy context, but many of the social and cultural issues that we identify have transnational relevance. Our own experience leads us to focus on carers of people with a disability, particularly those who provide intensive and long-term care: these carers are typically women whose caring role has occupied them for 70 or more hours per week for at least 15 years, and who face the poorest health and well-being outcomes (Carers NSW, 2014). We argue that those groups that have successfully embraced a rights agenda, such as women and people with a disability, have done so by combining grass-roots activism with a groundswell of theory building by scholars from within these groups with lived experience. We argue that carer advocacy and academic discourse around caregiving must likewise forge a space for carers to narrate their own lived experiences of discrimination and social oppression if the lives of the next generation of carers are to be characterised by the full rights of citizenship and participation, as well as recognition.

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Creating Inclusive Spaces for Students in Higher Education with Caregiving Responsibilities: Guidance and Recommendations

This briefing provides an overview of findings from research led by Prof. Moreau that looks at the relationship between care and academia for different groups in Higher Education (HE) in England. The most recent publication is an SRHE report that explores experiences of senior academic staff who are caregivers, with previous research projects looking at other academics, including Early Career Researchers, and students. The research reports are listed in the references section overleaf if you would like to read about this subject in more detail. This particular document focuses on students with caregiving responsibilities. It presents recommendations for how practitioners and policy makers, at an institutional and national level, can work towards making academia a more inclusive space for these students. It follows a similar briefing paper published in June 2019, ‘Creating Inclusive Spaces for Academic Staff with Caregiving Responsibilities in Higher Education’.

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Creating Inclusive Spaces for Academic Staff with Caregiving Responsibilities: Guidance and Recommendations

This briefing provides an overview of findings from research led by Prof. Moreau that looks at the relationship between care and academia for different groups in Higher Education (HE) in England. The most recent publication is an SRHE report which explores experiences of senior academic staff who are caregivers, with previous research projects looking at other academics, including Early Career Researchers, and students. The research reports are listed in the references section overleaf if you would like to read about this subject in more detail. This particular document focuses on academics with caregiving responsibilities. It presents recommendations for how practitioners and policy makers, at an institutional and national level, can work towards making academia a more inclusive space for these academics.

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Health issues and informal caregiving in Europe and Italy

Informal caregivers are the unpaid persons who take care of a not self-sufficient family member, due to old age or chronic illness or disability. As in all the European countries, the demand for informal cares is further increased as a result of the ageing societies and the social and political fallout of informal caregiving is a very current and important issue. We have overviewed some international scientific literature, with the aim of understanding the key research objectives to be firstly pursued to address this problem. In particular, we focused on the psycho-physical health differences in informal caregivers, subjected to long lasting load and prolonged stress, as compared to non caregiver persons. We also underlined the relationship between caregiver health differences and stress, gender type, kind of the care recipient (autism) and social and political situation in Europe and Italy. The collected data indicate the necessity to prevent caregiver psychological and physical health by appropriate laws, especially supporting women, often most involved in care activities.

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What Are Strategies to Advance Policies Supporting Family Caregivers? Promising Approaches From a Statewide Task Force

Family caregivers are the cornerstone of the long-term supports and services infrastructure in the United States, yet they often contend with many challenges related to this role. Public policy has been slow to change, leaving many caregivers vulnerable to health and economic consequences. Using models of policy making, we identify barriers to advancing policies that support family caregivers and overcome policy drift. We draw on discussions from the California Task Force on Family Caregiving as it prepares state policy recommendations. Identified strategies include identification of caregivers in health care and workplace settings to promote political consciousness raising, collecting and reporting on data that frame caregiving as a policy problem, borrowing policies and language from overlapping fields to emulate their policy successes, and presenting supportive caregiver policies as solutions to other policy problems. By presenting specific strategic approaches to advance caregiving policies, we provide tools to address the growing gap between caregiver needs and policy responses.

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Quantifying Family Spillover Effects in Economic Evaluations: Measurement and Valuation of Informal Care Time

Spillover effects on the welfare of family members may refer to caregiver health effects, informal care time costs, or both. This review focuses on methods that have been used to measure and value informal care time and makes suggestions for their appropriate use in cost-of-illness and cost-effectiveness analyses. It highlights the importance of methods to value informal care time that are independent of caregiver health effects in order to minimize double counting of spillover effects. Although the concept of including caregiver time costs in economic evaluations is not new, relatively few societal perspective cost-effectiveness analyses have included informal care, with the exception of dementia. This is due in part to challenges in measuring and valuing time costs. Analysts can collect information on time spent in informal care or can assess its impact in displacing other time use, notably time in paid employment. A key challenge is to ensure appropriate comparison groups that do not require informal care to be able to correctly estimate attributable informal care time or foregone market work. To value informal care time, analysts can use estimates of hourly earnings in either opportunity cost or replacement cost approaches. Researchers have used widely varying estimates of hourly earnings. Alternatively, stated-preference methods (i.e. contingent valuation, conjoint analysis) can be used to value the effect of informal care on utility, but this can entail double counting with health effects. Lack of consensus and standardization of methods makes it difficult to compare estimates of informal care costs. 

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Family Involvement in Adult Chronic Disease Care: Reviewing the Systematic Reviews

Health care providers, policy makers, and investigators are dependent upon the quality and accuracy of published research findings to inform and guide future practice and research in their field. Systematic reviews, the synthesis of outcomes across studies are increasingly more common in the family literature; however, published review reports often lack information on strategies reviewers used to insure dependability of findings, and minimize methodological bias in the review. In this article, we summarize findings from systematic reviews of interventions and outcomes from family involvement in adult chronic disease care published between 2007 and 2016. In addition, we explore procedures reviewers used to insure the quality and methodologic rigor of the review. Our discussion provides guidance and direction for future studies of family involvement in chronic disease care.

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Family caregivers: Important but often poorly understood

An editorial is presented on the increase importance of family caregivers to improve healthcare outcomes. It highlights the health benefits of caregiving to reduce physical, emotional and financial strains particularly for individuals with chronic illness. It also cites the influence of several factors to the increase caregiver engagement of the nurses including health policy, practice and nursing education.

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Utilizing Internet-based recruitment and data collection to access different age groups of former family caregivers

As Internet accessibility grows among adults in the United States, researchers' utilization of Internet-based surveys and recruitment strategies has increased, but there is a paucity of knowledge about their use in different age groups of former dementia caregivers. The purpose of this secondary analysis is to describe 1) the use of Internet-based recruitment in obtaining a sample inclusive of young and middle aged (age 18–64), young-old (age 65–74), and older-old (age 75 and older) former dementia caregivers and 2) the feasibility of collecting data using an online survey in young and middle aged, young-old, and older-old former dementia caregivers. Utilizing convenience sampling, a four-step recruitment strategy encompassing a combination of Internet-based and non-Internet-based recruitment strategies was employed. Participants (N = 171) completed an online survey. Older-old, young-old, and young and middle-aged participants comprised 9%, 30%, and 61% of the sample respectively. All age cohorts provided minimal missing data using an online survey, but older-old participants required 15 additional minutes to complete the survey than young-old participants. Both cohorts of older adults were directed to the survey less frequently through online referral sources than young and middle-aged participants, and no older-old participants were referred via Facebook. All three age cohorts consisted of mostly white women. Internet-based surveys and recruitment were feasible among the age groups but may present challenges for the older-old and minorities. Further research on Internet-based data collection and recruitment is indicated in minority and older-old caregivers, focusing on trust, educational and financial disparities, and technological proficiency as potential barriers. Highlights • Caregivers of all ages provided minimal missing data using an online survey, but the oldest experienced more survey fatigue. • Internet-based referral sources are more commonly used by young and middle-aged caregivers than older caregivers. • Facebook may not be useful in recruiting older-old former dementia caregivers. • Across all age groups, Internet-based recruitment may not be sufficient to access a sample diverse in race and ethnicity.

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An ethics of care research manifesto

Participatory methodologies are frequently used in social research and have matured over the past decades. Ethical aspects of participatory research feature in retrospective accounts of partnerships that contribute to quality research, and those that were problematic to negotiate in the research partnership. Meanwhile, social researchers have shared concerns about meaningful transformations from research and the processes involved to achieve effective, responsive partnerships. As participatory methodologies have matured, so has an ethics of care. An ethics of care research manifesto provides a framework for surfacing marginalisation and the potential for transformation, considering interdependencies, and negotiating research relationships with the broader research community.

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Family care work: a policy-relevant research agenda

This article addresses the need for policy-relevant research agendas on family care in transaction with formal care and public as well as organisational norms and policies in light of the crisis in caregiving for older adults. We propose a combined institutional and life-course theoretical approach, suggesting seven ways of organising scholarly enquiry to promote understanding of the changing nature of family care in the 21st century, inform policymakers' efforts at supporting family caregivers and improve caregivers' and care recipients' quality of life. These include: (1) moving beyond snapshots of individuals; (2) conducting comparative cross-cultural and crosscohort analyses; (3) documenting social heterogeneity, vulnerability and inequality; (4) capturing individuals' and families' adaptive strategies and cycles of control during the caregiving process; (5) investigating policy innovations and natural experiments; (6) assessing third parties as mediating institutions between regulatory environments and caregiving families; and (7) attending to the subjective meanings of care.

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Updated meta-review of evidence on support for carers

BACKGROUND: Policy and research interest in carers continues to grow. A previous meta-review, published in 2010, by Parker et al. (Parker G, Arksey H, Harden M. 'Meta-review of international evidence on interventions to support carers.' York: Social Policy Research Unit, University of York; 2010) found little compelling evidence of effectiveness about specific interventions and costs. OBJECTIVE: To update what is known about effective interventions to support carers of ill, disabled or older adults. DESIGN: Rapid meta-review. SETTING: Any relevant to the UK health and social care system. PARTICIPANTS: Carers (who provide support on an unpaid basis) of adults who are ill, disabled or older. INTERVENTIONS: Any intervention primarily aimed at carers. MAIN OUTCOME MEASURES: Any direct outcome for carers. DATA SOURCES: Database searches (including Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, MEDLINE, Applied Social Sciences Index and Abstracts and Social Care Online) for systematic reviews published from January 2009 to 2016. REVIEW METHODS: We used EndNote X7.4 (Thomson Reuters, CA, USA) to screen titles and abstracts. Final decisions on the inclusion of papers were made by two reviewers independently, using a Microsoft Excel 2013 spreadsheet (Microsoft Corporation, Redmond, WA, USA). We carried out a narrative synthesis structured by patient condition and by seven outcomes of interest. We assessed the quality of the included systematic reviews using established criteria. We invited a user group of carers to give their views on the overall findings of our review. RESULTS: Sixty-one systematic reviews were included (27 of high quality, 25 of medium quality and nine of low quality). Patterns in the literature were similar to those in earlier work. The quality of reviews had improved, but primary studies remained limited in quality and quantity. Of the high-quality reviews, 14 focused on carers of people with dementia, four focused on carers of those with cancer, four focused on carers of people with stroke, three focused on carers of those at the end of life with various conditions and two focused on carers of people with mental health problems. Multicomponent interventions featured prominently, emphasising psychosocial or psychoeducational content, education and training. Multiple outcomes were explored, primarily in mental health, burden and stress, and well-being or quality of life. Negative effects following respite care were unsupported by our user group. As with earlier work, we found little evidence on intervention cost-effectiveness. No differences in review topics were found across high-, medium- and low-quality reviews. LIMITATIONS: The nature of meta-reviews precludes definitive conclusions about intervention effectiveness, for whom and why. Many of the included reviews were small in size and authors generally relied on small numbers of studies to underpin their conclusions. The meta-review was restricted to English-language publications. Short timescales prevented any investigation of the overlap of primary studies, and growth in the evidence base since the original meta-review meant that post-protocol decisions were necessary. CONCLUSIONS: There is no 'one size fits all' intervention to support carers. Potential exists for effective support in specific groups of carers. This includes shared learning, cognitive reframing, meditation and computer-delivered psychosocial support for carers of people with dementia, and psychosocial interventions, art therapy and counselling for carers of people with cancer. Counselling may also help carers of people with stroke. The effectiveness of respite care remains a paradox, given the apparent conflict between the empirical evidence and the views of carers. FUTURE WORK:  More good-quality, theory-based, primary research is warranted. Evidence is needed on the differential impact of interventions for various types of carers (including young carers and carers from minority groups), and on the effectiveness of constituent parts in multicomponent programmes. Further research triangulating qualitative and quantitative evidence on respite care is urgently required. The overlap of primary studies was not formally investigated in our review, and this warrants future evaluation. STUDY REGISTRATION: This study is registered as PROSPERO CRD42016033367. FUNDING: The National Institute for Health Research Health Services and Delivery Research programme.

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Survivorship burden for individuals, households and society : estimates and methodology

With more and more individuals surviving cancer it is important to estimate the economic burden survivorship places on these individuals, and also on their friends, family, carers and the wider society. This paper provides a review of current estimates of the cost of living with and surviving cancer. Few studies have provided an all-encompassing estimate of the burden. A range of methodologies to estimate the direct health care costs, direct non-health care costs, productivity loss and informal care costs of surviving cancer are described. Additionally an often overlooked burden that on survivors' and caregivers' quality of life is also discussed. This paper hopes to encourage more research on the economic burden of cancer survivorship to aid policy makers in their resource allocation decisions and help establish an ongoing research agenda. 

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Dementia Caregiver Grief and Bereavement: An Integrative Review

Alzheimer's disease and related dementias make up the fifth leading cause of death for individuals of 65 years of age and older in the United States. Seventy percent of these individuals will die in long-term care settings. The aim of this integrative review was to examine and synthesize the evidence on grief and bereavement in Alzheimer's disease and related dementias caregivers. This review identified five critical gaps in the existing evidence: (a) a lack of ethnic and gender diversity among caregivers studied, (b) limited use of valid instruments to study dementia caregiver grief and bereavement, (c) no substantive research examining dementia caregiver grief and bereavement for caregivers whose family members die in long-term care, (d) a lack of evidence examining the effect of hospice services on dementia caregiver grief and bereavement, and (e) a lack of grief and bereavement interventions for dementia caregivers whose family members die in long-term care.

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Issues with the measurement of informal care in social surveys: evidence from the English Longitudinal Study of Ageing

Informal care plays a significant role in the care system for older people in the United Kingdom, and this is projected to increase considerably in the next three decades as the population ages. Understanding these trends requires a good quality measurement of informal care. In this study, the authors compare care-givers’ responses to different informal care questions from the English Longitudinal Study of Ageing (ELSA) to investigate the influence of question design on the self-reporting of informal care. They also analyse spousal care dyads in order to model discrepancies in the reporting of care provision between spouses to provide an insight into the reliability of informal care measurements. The authors find that the most common measures used are likely to be under-estimating both the scale and scope of informal care, and they recommend careful consideration of the content of informal care survey questions in order to operationalise the measures of informal care activities.

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Research Commentary: A Carer’s Roadmap for Research, Practice, and Policy on Suicide, Homicide, and Self-Harm

Academic researchers are increasingly asked to engage with the wider world, both in terms of creating impact from their work, and in telling the world what goes on in university research departments. An aspect of this engagement involves working with patients, carers or members of the public as partners in research. This means working with them to identify important research questions and designing studies to address those questions. This commentary was jointly written by two researchers and people with relevant caring experience for this special issue. It brings to the forefront the concerns of carers who are also involved in research as partners. The aim is to highlight their perspectives to inform future research, policy, and practice.

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Change over 12 years in residential provision for adult persons with intellectual disabilities in Ireland

Purpose: The purpose of this paper is to document the impact of major policy changes and reductions in government funding on residential provision for people with intellectual disabilities (ID) in Ireland. Design/methodology/approach: Ireland is unique in having a national database of people in receipt of services from specialist ID providers. Information on persons in residential settings from 2005 to 2016 was examined in terms of changes in the types of provision over time and broken down by age groups. Findings: From 2011 onwards, cuts in government funding coincided with a continuing reduction in the overall provision of residential accommodation for adults with ID. There was a parallel increase in the number of people living with family carers, especially persons aged 55 years and over. The greatest reduction was in residential centres which was in line with recent policy but this was not matched by an increase in alternative options, with fewer people aged 20-34 living in residential accommodation of any kind. Compared to Great Britain, Ireland has proportionately more residential places with fewer people living independently. Social implications: More Irish families have to continue caring for their adult relatives into their old age. Likewise, those resident in group homes and living independently are growing older which means there is an increased likelihood they will require additional support. Originality/value: This national data set is a valuable tool for monitoring changes in service provision over time and for determining the impact of government policy and funding decisions.

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Assessing care‐giving demands, resources and costs of family/friend caregivers for persons with mental health disorders: a scoping review

As mental health (MH) care has shifted from institutional settings to the community, families and friends are responsible for providing the majority of the care at home. The substantial literature on the adverse effects experienced by caregivers has focused mainly on psychological morbidity. Less attention has been paid to how caregivers for persons with MH disorders interact with larger social systems and the impacts of factors such as financial strain, lost time from leisure activities, and the availability of health and social services. Method: a scoping review of MH and other caregiver questionnaires published between 1990 and 2016 to determine whether they addressed four key domains: caregiver work demands, resource needs, resource utilisation and costs. A range of health and social care databases were searched, including MEDLINE and Health and Psychosocial Instruments. After screening for relevance and quality, our search identified 14 instruments addressing elements related to one or more of our domains. Because these instruments covered only a small portion of our domains, a second targeted search was conducted of the general care‐giving literature and consulted with experts, identifying an additional 18 instruments. A total of 32 questionnaires were reviewed, 14 specific to care‐giving for mental health problems and 18 for other health conditions. Our search identified instruments or items within instruments that assess constructs in each of our domains, but no one instrument covered them completely. Additionally, some constructs were evaluated in detail and others only addressed by single items. While these instruments are helpful for moving measurement beyond the psychological impacts of care‐giving, our results serve only as an initial guide. Additional methodological work is needed to more comprehensively measure the impact of care‐giving for individuals with MH disorders and to contribute to the development of more meaningful and effective policies and programmes.

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Which interventions work for dementia family carers?: An updated systematic review of randomized controlled trials of carer interventions

Objective: The aim of this study was to update the literature on interventions for carers of people with dementia published between 2006 and 2016 and evaluate the efficacy of psychoeducational programs and psychotherapeutic interventions on key mental health outcomes (depression, anxiety, burden, and quality of life). Methods: A meta-analysis was carried out of randomized controlled trials of carer interventions using MEDLINE, PsycINFO, Scopus, and Cochrane Central Register of Controlled Trials. Results: The majority of studies were conducted in Western and Southern Europe or the United States and recruited carers of people with Alzheimer's disease or dementia grouped as a whole. The most commonly used outcome measures were depression and burden across studies. The updated evidence suggested that psychoeducation-skill building interventions delivered face-to-face can better impact on burden. Psychotherapeutic interventions underpinned by Cognitive Behavior Therapy (CBT) models demonstrated strong empirical support for treating anxiety and depression and these effects were not affected by the mode of delivery (i.e. face-to-face vs. technology). A modern CBT approach, Acceptance and Commitment Therapy (ACT), seemed to be particularly beneficial for carers experiencing high levels of anxiety. Conclusions: Future research needs to explore the efficacy of interventions on multiple clinical outcomes and which combination of interventions (components) would have the most significant effects when using CBT. The generalization of treatment effects in different countries and carers of different types of dementia also need to be addressed. More research is needed to test the efficacy of modern forms of CBT, such as ACT.

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Internet-based interventions aimed at supporting family caregivers of people with dementia: systematic review

Background: Caring for someone with dementia is one of the most challenging caring roles. The need for support for family caregivers has been recognized for some time but is often still lacking. With an aging population, demand on health and social care services is growing, and the population is increasingly looking to the internet for information and support. Objective: In this review, we aimed to (1) identify the key components of existing internet-based interventions designed to support family caregivers of people with dementia, (2) develop an understanding of which components are most valued by caregivers, and (3) consider the evidence of effectiveness of internet-based interventions designed to support family caregivers of people with dementia. Methods: We conducted a systematic search of online databases in April 2018. We searched reference lists and tracked citations. All study designs were included. We adopted a narrative synthesis approach with thematic analysis and tabulation as tools. Results: We identified 2325 studies, of which we included 40. The interventions varied in the number and types of components, duration and dose, and outcomes used to measure effectiveness. The interventions focused on (1) contact with health or social care providers, (2) peer interaction, (3) provision of information, (4) decision support, and (5) psychological support. The overall quality of the studies was low, making interpretation and generalizability of the effectiveness findings difficult. However, most studies suggested that interventions may be beneficial to family caregiver well-being, including positive impacts on depression, anxiety, and burden. Particular benefit came from psychological support provided online, where several small randomized controlled trials suggested improvements in caregiver mental health. Provision of information online was most beneficial when tailored specifically for the individual and used as part of a multicomponent intervention. Peer support provided in online groups was appreciated by most participants and showed positive effects on stress. Finally, online contact with a professional was appreciated by caregivers, who valued easy access to personalized practical advice and emotional support, leading to a reduction in burden and strain. Conclusions: Although mixed, the results indicate a positive response for the use of internet-based interventions by caregivers. More high-quality studies are required to identify the effectiveness of internet interventions aimed at supporting family caregivers, with particular focus on meeting the needs of caregivers during the different stages of dementia.

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Updated meta-review of evidence on support for carers

Objective: To update a 2010 meta-review of systematic reviews of effective interventions to support carers of ill, disabled, or older adults. This article reports on the most promising interventions based on the best available evidence. Methods: Rapid meta-review of systematic reviews published from January 2009 to 2016. Results: Sixty-one systematic reviews were included (27 high quality, 25 medium quality, and nine low quality). The quality of reviews has improved since the original review, but primary studies remain limited in quality and quantity. Fourteen high quality reviews focused on carers of people with dementia, four on carers of those with cancer, four on carers of people with stroke, three on carers of those at the end of life with various conditions, and two on carers of people with mental health problems. Multicomponent interventions featured prominently, emphasizing psychosocial or psychoeducational content, education and training. Improved outcomes for carers were reported for mental health, burden and stress, and wellbeing or quality of life. Negative effects were reported in reviews of respite care. As with earlier work, there was little robust evidence on the cost-effectiveness of reviewed interventions. Conclusions: There is no ‘one size fits all’ intervention to support carers. There is potential for effective support in specific groups of carers, such as shared learning, cognitive reframing, meditation, and computer-delivered psychosocial support for carers of people with dementia. For carers of people with cancer, effective support may include psychosocial interventions, art therapy, and counselling. Carers of people with stroke may also benefit from counselling. More good quality, theory-based, primary research is needed.

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Co-design of a carers strategy for New South Wales: reflections on a new approach to collaborative policy making with carers

NSW is Australia's most populous state, with 7.7 million people (about a third of the Australian population). There are 905,000 carers in NSW. Carers provide ongoing unpaid support to people who need it because of their disability, chronic illness, mental ill-health, dementia or frail age. This article looks at the New South Wales (NSW) Carers Strategy 2014–19 (NSW Department of Family and Community Services, 2014), which is a whole-of-government and whole of-community response to support carers in NSW The aim is for carers in NSW to be supported to participate in social and economic life, to be healthy, and to live well.

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Understanding and responding to the needs of the carers of people with dementia in the UK, the US and beyond

...this paper explores:

  • Insights into the role and experience of carers in different national contexts
  • Good practice examples of services, organisations and approaches which have sought to improve support to the carers of people with dementia
  • Policy and practice recommendations for key stakeholders such as policy makers, welfare services and employers

Given the traditional focus of Walgreens Boots in the US and the UK (and given very different policy contexts and welfare mixes), the review focuses on these two countries, with additional insights from other countries prominent in the literature and representing different welfare regimes. After searching the literature and following dialogue with UK and US respondents, this includes:

  • Norway (as an example of developments in a Scandinavian system with a comprehensive welfare state, an emphasis on maximising labour market participation and a commitment to gender equality)
  • Australia (as an example of an Australasian country with strong links to the UK)
  • South Africa (as an example of an African country with a younger population but a growing recognition of future needs as the population ages, as well as challenges with HIV-associated dementia)

Throughout the paper, there is an overarching question about the extent to which different countries are ready for the implications of the demographic changes they face, and there are regular textboxes which pose questions to government, to employers, to health and social care, and to broader society to help them reflect on key themes.

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Challenges and support for family caregivers of glioma patients

Glioma patients are not only confronted with the diagnosis and treatment of cancer, but also with disease-specific symptoms that greatly affect everyday life. Common symptoms among patients include motor dysfunction, sensory loss, seizures, cognitive deficits, changes in behaviour and personality, mood issues, and fatigue. This review focuses on family caregivers, for whom dealing with the diagnosis and treatment of a brain tumour in their loved one while managing disease-specific symptoms can be challenging. Supportive interventions to assist caregivers have been reported, but high-quality scientific evidence for the effectiveness of these programmes is lacking. Further research is needed to determine how best to support family caregivers to manage glioma patients' symptoms while maintaining their own health. Research is also required in evaluating the health economic benefits of support programmes for caregivers, as better care for caregivers may potentially reduce overall healthcare costs.

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Family Caregiver Participation in Palliative Care Research: Challenging the Myth

Context. Despite international guidelines emphasizing consumer-directed care and autonomous decisions in research participation, there is a common myth that research can be an additional and unwanted burden on patients and their family members. Objectives. To examine the experiences and impact of research involvement on family caregivers (FCs) of terminally ill people, focusing within home-based palliative care. Methods. Three hundred sixteen of 322 participants (98.1%), who completed an FC support intervention through a stepped-wedge cluster trial (Australia, 2012-2015), participated in a postintervention telephone interview on their study experiences, which included quantitative and qualitative questions. Results. Ninety-seven percent of both the control (n = 89) and intervention (n = 227) groups perceived positive aspects, whereas almost all did not report any negative aspects of being involved in this research the majority rated their involvement as very/extremely beneficial (control 77% intervention 83%). The qualitative analysis generated three major themes: "intrapersonal-inward directed" "connection with others-outward directed" and "interpersonal-participant-researcher relationship." Conclusions. This study provided quantitative and qualitative evidence challenging the myth. In contrast to health professional concerns, FCs appreciated the opportunity to participate and benefited from their involvement in research. Research protocols need to be specifically tailored to the needs of family caregivers and include debriefing opportunities for all participants at the end of intervention studies, regardless of which group they have been assigned. Strategies that facilitate health professionals' understanding of the research and risk benefits may help reduce gatekeeping and improve the validity of research findings.

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Caring for carers in community pharmacy

'...much of the research on intervention types focuses on carers for people with a specific condition, eg dementia, or involves simple interventions, eg a focus on goal setting. This presents a significant research gap; what are the interventions that have been delivered in any primary care setting, for a variety of carer types?'

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Factors associated with the quality of life of family carers of people with dementia: A systematic review

Introduction Family carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia. Methods Searches on terms including “carers,” “dementia,” “family,” and “quality of life” in research databases. Findings were synthesized inductively, grouping factors associated with carer QOL into themes. Results A total of 909 abstracts were identified. Following screening, lateral searches, and quality appraisal, 41 studies (n = 5539) were included for synthesis. A total of 10 themes were identified: demographics; carer–patient relationship; dementia characteristics; demands of caring; carer health; carer emotional well-being; support received; carer independence; carer self-efficacy; and future. Discussion The quality and level of evidence supporting each theme varied. We need further research on what factors predict carer QOL in dementia and how to measure it. 

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Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review

Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to guide care for this population has not been comprehensively assessed. In order to appraise the state-of-the-science of HF family caregiving and recommend areas for future research, the aims of this review were to summarize (1) how caregivers influence patients, (2) the consequences of HF for caregivers, and (3) interventions directed at HF caregivers. We reviewed all literature to December 2015 in PubMed and CINAHL using the search terms “heart failure” AND “caregiver.” Inclusion criteria dictated that studies report original research of HF family caregiving. Articles focused on children or instrument development or aggregated HF with other illnesses were excluded. We identified 120 studies, representing 5700 caregivers. Research on this population indicates that (1) caregiving situations vary widely with equally wide-ranging tasks for patients to help facilitate their health behaviors, psychological health and relationships, and quality of life (QoL); (2) caregivers have numerous unmet needs that fluctuate with patients’ unpredictable medical status, are felt to be ignored by the formal healthcare system, and can lead to distress, burden, and reduced QoL; and (3) relatively few interventions have been developed and tested that effectively support HF family caregivers. We provide recommendations to progress the science forward in each of these areas that moves beyond descriptive work to intervention development and clinical trials testing.

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Valuing and Integrating Informal Care as a Core Component of Long-Term Care for Older People: A Comparison of Recent Developments in Italy and Spain

The international long-term care (LTC) debate has recently been focusing on how to strengthen home care provision. In this regard, a major role has been played by informal care and how to best integrate it in a holistic care approach. Italy and Spain, usually labeled as “familialist” or “family-based” care models, have been promoting national reforms or actions to support the integration of “informal” actors into the overall LTC system. Through a comparative review of recent trends observed in the two care regimes, this article aims at contributing to improve our cross-national understanding of how LTC is changing across Europe, identifying the basic approaches adopted in Italy and Spain and highlighting both their strengths and drawbacks.

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Caregiving for the Elderly Person: Discourses Embedded in the Brazilian Practical Guide for the Caregiver

It is estimated that in 2025, Brazil will have the sixth largest elderly population in the world. Beyond the economic consequences of this projection, this changing demographic portends significant changes in the social realm. The aim of this study was to review and consider a range of government documents, developed during the past thirty years and directed toward elderly Brazilian citizens, to explore the ways that caregivers of older persons are positioned in daily care practices through the discourses such documents deploy. The analysis draws on Foucault’s genealogical approach, and begins with a review of the historicity of policies, regulations, and legislation related to older people, followed by an analysis of the discourses embedded in the Practical Guide for the Caregiver, a document created by the Brazilian Ministry of Health to provide guidance to informal caregivers in the actual provision of care to elders. The analysis shows that throughout the Guide, caregivers are portrayed as multifaceted subjects yet at the same time, three primary positionings for the caregiver and her or his work are emphasized: the almost-angel, the almost-healthcare professional, and the almost-household professional.

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Improving Support for America's Hidden Heroes: A Research Blueprint

The United States is home to more than 21 million veterans, many of whom deployed to support combat operations around the globe during their military service and sustained service-related conditions or disabilities. Supporting these wounded, ill, and injured warriors once home are millions of informal caregivers-individuals who provide unpaid support with activities that enable the service member or veteran to live in a noninstitutionalized setting. In this study, researchers describe elements of a research blueprint to inform future efforts to improve support for military and veteran caregivers. To construct this blueprint, researchers inventoried currently available research on caregiving for disabled adults and children and gathered stakeholder input by conducting a survey and facilitating an online panel. The study highlights the need for more studies that examine how military and veteran caregiver needs evolve over time, how programs are working, and how caregiving affects specific subgroups. The resulting blueprint should serve as a guide for the caregiver support community to use in prioritizing and facilitating future research.

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Novel technology as platform for interventions for caregivers and individuals with severe mental health illnesses: A systematic review

Background: Severe mental illnesses (SMIs) have been found to be associated with both increases in morbidity-mortality, need for treatment care in patients themselves, and burden for relatives as caregivers. A growing number of web-based and mobile software applications have appeared that aim to address various barriers with respect to access to care. Our objective was to review and summarize recent advancements in such interventions for caregivers of individuals with a SMI.; Methods: We conducted a systematic search for papers evaluating interactive mobile or web-based software (using no or only minimal support from a professional) specifically aimed at supporting informal caregivers. We also searched for those supporting patients with SMI so as to not to miss any which might include relatives.; Results: Out of a total of 1673 initial hits, we identified 11 articles reporting on 9 different mobile or web-based software programs. The main result is that none of those studies focused on caregivers, and the ones we identified using mobile or web-based applications were just for patients and not their relatives.; Limitations: Differentiating between online and offline available software might not always have been totally reliable, and we might have therefore missed some studies.; Conclusions: In summary, the studies provided evidence that remotely accessible interventions for patients with SMI are feasible and acceptable to patients. No such empirically evaluated program was available for informal caregivers such as relatives. Keeping in mind the influential role of those informal caregivers in the process of treatment and self-management, this is highly relevant for public health. Supporting informal caregivers can improve well-being of both caregivers and patients.

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Policies supporting informal caregivers across Canada: a scoping review protocol

Introduction: As the population ages, governments worldwide have begun seeking ways to support informal caregiving. In this light, Canada is no exception, but despite the centrality of the informal care strategy in elder care, we know little about the intertwining and overlapping policies that have been implemented to support informal caregivers providing assistance to the elderly, and to fellow citizens with disabilities. This review aims to identify the diversity of Canadian national, provincial and territorial policies supporting informal caregivers. It seeks, from its generalist focus on all informal care, to draw out specific observations and lessons for the elder care policy environment.; Methods and Analysis: Given the vast and multidisciplinary nature of the literature on informal care policy, as well as the paucity of existing knowledge syntheses, we will adopt a scoping review methodology. We will follow the framework developed by Arksey and O'Malley that entails six stages, including: (1) identifying the research question(s); (2) searching for relevant studies; (3) selecting studies; (4) charting the data; (5) collating, summarising and reporting the results; (6) and conducting consultation exercises. We will conduct these stages iteratively and reflexively, making adjustments and repetitions when appropriate to ensure we have covered the literature as comprehensively as possible. We will pursue an iterative integrated knowledge translation (iKT) strategy engaging our knowledge users through all stages of the review.; Ethics and Dissemination: By adopting an iKT strategy we will ensure our knowledge users directly contribute to the project's policy relevant publications. Upon completion of the review, we will present the findings at academic conferences, publishing a research report, along with an academic peer-reviewed article. Our intent is to develop an online, free-access evidence repository that catalogues the full range of Canada's English language informal care support policies. Finally, the completed review will allow us to publish a series of policy briefs in collaboration with knowledge users illustrating how to promote and better implement informal care support policies. Our study has received ethics approval from the University of Calgary Conjoint Ethics Board.

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Traditions of research in community mental health care planning and care coordination: A systematic meta-narrative review of the literature

Context: In response to political and social factors over the last sixty years mental health systems internationally have endeavoured to transfer the delivery of care from hospitals into community settings. As a result, there has been increased emphasis on the need for better quality care planning and care coordination between hospital services, community services and patients and their informal carers. The aim of this systematic review of international research is to explore which interventions have proved more or less effective in promoting personalized, recovery oriented care planning and coordination for community mental health service users.; Methods: A systematic meta-narrative review of research from 1990 to the present was undertaken. From an initial return of 3940 papers a total of 50 research articles fulfilled the inclusion criteria, including research from the UK, Australia and the USA.; Findings: Three research traditions are identified consisting of (a) research that evaluates the effects of government policies on the organization, management and delivery of services; (b) evaluations of attempts to improve organizational and service delivery efficiency; (c) service-users and carers experiences of community mental health care coordination and planning and their involvement in research. The review found no seminal papers in terms of high citation rates, or papers that were consistently cited over time. The traditions of research in this topic area have formed reactively in response to frequent and often unpredictable policy changes, rather than proactively as a result of intrinsic academic or intellectual activity. This may explain the absence of seminal literature within the subject field. As a result, the research tradition within this specific area of mental health service delivery has a relatively short history, with no one dominant researcher or researchers, tradition or seminal studies amongst or across the three traditions identified.; Conclusions: The research findings reviewed suggests a gap has existed internationally over several decades between policy aspirations and service level interventions aimed at improving personalised care planning and coordination and the realities of everyday practices and experiences of service users and carers. Substantial barriers to involvement are created through poor information exchange and insufficient opportunities for care negotiation.

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Putting responsive behaviours in place: Examining how formal and informal carers understand the actions of people with dementia

Living alongside and working with people with dementia who yell or strike out can be very demanding and sometimes harmful. It is generally understood that such actions may be a response to the social and physical environment, yet very little attention has been paid to understanding what role the environment plays in eliciting and responding to these actions across different settings. Drawing on 27 semi-structured interviews with formal and informal carers, this article examines how carers understand the actions of people with dementia in relation to their environment. We identify individual, interpersonal, local environmental, macro-scale and temporal dynamics that influence the actions of people with dementia and carers' capacities to work with them. Drawing on relational thinking and the concept of structural violence, we argue that many of the problems and solutions associated with aggressive actions are located outside the person with dementia in broader relations and systems of care. We conclude with a discussion of how these understandings can inform developments in the systems of home and community care.

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Exploring the collaboration between formal and informal care from the professional perspective-A thematic synthesis

In Dutch policy and at the societal level, informal caregivers are ideally seen as essential team members when creating, together with professionals, co-ordinated support plans for the persons for whom they care. However, collaboration between professionals and informal caregivers is not always effective. This can be explained by the observation that caregivers and professionals have diverse backgrounds and frames of reference regarding providing care. This thematic synthesis sought to examine and understand how professionals experience collaboration with informal caregivers to strengthen the care triad. PubMed, Medline, PsycINFO, Embase, Cochrane/Central and CINAHL were searched systematically until May 2015, using specific key words and inclusion criteria. Twenty-two articles were used for thematic synthesis. Seven themes revealed different reflections by professionals illustrating the complex, multi-faceted and dynamic interface of professionals and informal care. Working in collaboration with informal caregivers requires professionals to adopt a different way of functioning. Specific attention should be paid to the informal caregiver, where the focus now is mainly on the client for whom they care. This is difficult to attain due to different restrictions experienced by professionals on policy and individual levels. Specific guidelines and training for the professionals are necessary in the light of the current policy changes in the Netherlands, where an increased emphasis is placed on informal care structures.

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A systematic review on the implementation of eHealth interventions for informal caregivers of people with dementia

Objectives: The objectives were to (1) systematically review the literature on the implementation of eHealth interventions for informal caregivers of people with dementia, and (2) identify determinants of successful implementation.; Methods: Online databases were searched for articles about eHealth interventions for informal caregivers of people with dementia, providing information on their implementation. Articles were independently screened and inductively analyzed using qualitative analysis. The analysis was mapped onto the Consolidated Framework for Implementation Research (CFIR; Damschroder et al., 2009).; Findings: 46 articles containing 204 statements on implementation were included. The statements on implementation were grouped into four categories: Determinants associated with the eHealth application, informal caregiver, implementing organization, or wider context. Mapping of the determinants on the CFIR revealed that studies have focused mostly on characteristics of the intervention and informal caregiver. Limited attention has been paid to organizational determinants and the wider context.; Conclusions: Despite prolific effectiveness and efficacy research on eHealth interventions for caregivers of people with dementia, there is a critical dearth of implementation research. Furthermore, there is a mismatch between eHealth intervention research and implementation frameworks, especially concerning organizational factors and wider context. This review underscores the importance of future implementation research in bridging the gap between research and practice.

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A systematic review of heart failure dyadic self-care interventions focusing on intervention components, contexts, and outcomes

Background: Having support from an informal carer is important for heart failure patients. Carers have the potential to improve patient self-care. At the same time, it should be acknowledged that caregiving could affect the carer negatively and cause emotional reactions of burden and stress. Dyadic (patient and informal carer) heart failure self-care interventions seek to improve patient self-care such as adherence to medical treatment, exercise training, symptom monitoring and symptom management when needed. Currently, no systematic assessment of dyadic interventions has been conducted with a focus on describing components, examining physical and delivery contexts, or determining the effect on patient and/or carer outcomes.; Objective: To examine the components, context, and outcomes of dyadic self-care interventions.; Design: A systematic review registered in PROSPERO, following PRISMA guidelines with a narrative analysis and realist synthesis.; Data Sources: PubMed, EMBASE, Web of Science, PsycINFO, and Cochrane Central Register of Controlled Trials were searched using MeSH, EMTREE terms, keywords, and keyword phrases for the following concepts: dyadic, carers, heart failure and intervention. Eligible studies were original research, written in English, on dyadic self-care interventions in adult samples.; Review Methods: We used a two-tiered analytic approach including both completed studies with power to determine outcomes and ongoing studies including abstracts, small pilot studies and protocols to forecast future directions.; Results: Eighteen papers - 12 unique, completed intervention studies (two quasi- and ten experimental trials) from 2000 to 2016 were reviewed. Intervention components fell into three groups - education, support, and guidance. Interventions were implemented in 5 countries, across multiple settings of care, and involved 3 delivery modes - face to face, telephone or technology based. Dyadic intervention effects on cognitive, behavioral, affective and health services utilization outcomes were found within studies. However, findings across studies were inconclusive as some studies reported positive and some non-sustaining outcomes on the same variables. All the included papers had methodological limitations including insufficient sample size, mixed intervention effects and counter-intuitive outcomes.; Conclusions: We found that the evidence from dyadic interventions to promote heart failure self-care, while growing, is still very limited. Future research needs to involve advanced sample size justification, innovative solutions to increase and sustain behavior change, and use of mixed methods for capturing a more holistic picture of effects in clinical practice.

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An integrative review of information and communication technology based support interventions for carers of home dwelling older people

Background: A growing number of studies of informal carers of older people reveal positive results concerning support via Information and Communication Technologies (ICT). Systematic examination of factors that have a potential impact on carer outcomes are needed to inform future research.; Objective: To explore studies concerning ICT support of adult carers of older people and to identify study characteristics that have a potential impact on carer outcomes.; Methods: This integrative review includes 123 studies published since 2005. Fundamental questions for designing sensitive support interventions; 'who, what, and how' were applied to a synthesis of the results.; Results: Identified characteristics from the studies responding to the who question included variables of the carers, such as their relationship with the care recipient or their ethnicity. Characteristics related to the what question related to the types of interventions, and the how question concerned the different services or programs offered, the idiosyncratic needs of the carers, and the types of technologies used.; Conclusion: Results are discussed according to micro, meso and macro levels of analysis. This extensive review can inform future studies and highlight the evidence in the area for decision makers, practitioners and/or NGOs working with innovative forms of support for carers of older people.

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Care Recipient Multimorbidity and Health Impacts on Informal Caregivers: A Systematic Review

Background and Objectives: Caregiving outcomes have often been reported in terms of care recipients of single disease, rather than multiple health conditions. A systematic review was conducted to outline caregiving health outcomes and its association with care recipient multimorbidity for informal caregivers of older adults.; Research Design and Methods: A search strategy was applied in six databases and grey literature. Inclusion criteria were primary observational studies on informal caregiving for care recipients aged 60 years and above, in the English language. Informal caregivers were those not formally hired and multimorbidity referred to presence of at least two health conditions. From a total of 2,101 titles, 230 abstracts were screened, and 19 articles were included. Quality assessment was conducted with application of the Newcastle-Ottawa-Scale.; Results: Health-related and caregiving-related outcomes have been assessed for informal caregivers of older adults with multimorbidity. Caregiver subjective burden was most commonly evaluated and often reported to be low to moderate. In association with care recipient multimorbidity, caregiver burden, quality of life, and perceived difficulty in assisting the older adults were examined in 14 of the studies with mixed results. Studies were heterogeneous, with nonuniform definitions of informal caregivers and multimorbidity as well as measurement tools.; Discussion and Implications: This narrative review found that caring for older adults with multimorbidity impacts caregivers, although overall evidence is not conclusive. Despite caregiving-related outcomes being most commonly assessed among the caregivers, particularly subjective burden, findings suggest that it is worthwhile to examine other outcomes to enrich the evidence base.

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Touchscreen interventions and the well-being of people with dementia and caregivers: a systematic review

Background: Dementia can have significant detrimental impacts on the well-being of those with the disease and their carers. A range of computer-based interventions, including touchscreen-based interventions have been researched for use with this population in the hope that they might improve psychological well-being. This article reviews touchscreen-based interventions designed to be used by people with dementia (PWD), with a specific focus in assessing their impact on well-being.; Method: The data bases, PsycInfo, ASSIA, Medline, CINAHL, and Cochrane Reviews were searched for touchscreen-based interventions designed to be used by PWD with reported psychological well-being outcomes. Methodological quality was assessed using Pluye and Hong's (2014) Mixed Methods Appraisal Tool (MMAT) checklist.; Results: Sixteen papers were eligible. They covered 14 methodologically diverse interventions. Interventions were reported to be beneficial in relation to mental health, social interaction, and sense of mastery. Touchscreen interventions also reportedly benefit informal carers in relation to their perceived burden and the quality of their relationships with the people they care for. Key aspects included the user interface, provision of support, learning style, tailored content, appropriate challenge, ergonomics, and users' dementia progression.; Conclusions: Whilst much of the existing research is relatively small-scale, the findings tentatively suggest that touchscreen-based interventions can improve the psychological well-being of PWD, and possibilities for more rigorous future research are suggested.

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Coping and adjustment in informal male carers: A systematic review of qualitative studies

Informal caregivers represent a significant proportion of the population. This can be a challenging role associated with adverse psychological outcomes. Gender can have important influences on choice of coping strategies; however, male caregivers have been a relatively understudied group in this regard. A systematic review of qualitative studies was conducted to synthesize research on male carer self-initiated coping strategies. A total of 16 studies met inclusion criteria for the current review. Caregiving in the context of neurological conditions was a key focus of studies, as was a focus on older male carers. Data on coping strategies were extracted and summarized under 4 metathematic categories: Finding meaning and purpose; creating new behaviors, roles, and identities; maintain status quo and utilize existing resources; promoting masculinities and taking charge. The findings of the current review suggest that men employ various coping strategies, many of which can be conceptualized as adopting either a traditional or flexible approach to gender role socialization. The implications for the review are discussed, along with directions for future research.

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Caregiver Integration During Discharge Planning for Older Adults to Reduce Resource Use: A Metaanalysis

Objectives: To determine the effect of integrating informal caregivers into discharge planning on postdischarge cost and resource use in older adults.; Design: A systematic review and metaanalysis of randomized controlled trials that examine the effect of discharge planning with caregiver integration begun before discharge on healthcare cost and resource use outcomes. MEDLINE, EMBASE, and the Cochrane Library databases were searched for all English-language articles published between 1990 and April 2016.; Setting: Hospital or skilled nursing facility.; Participants: Older adults with informal caregivers discharged to a community setting.; Measurements: Readmission rates, length of and time to post-discharge rehospitalizations, costs of postdischarge care.; Results: Of 10,715 abstracts identified, 15 studies met the inclusion criteria. Eleven studies provided sufficient detail to calculate readmission rates for treatment and control participants. Discharge planning interventions with caregiver integration were associated with a 25% fewer readmissions at 90 days (relative risk (RR) = 0.75, 95% confidence interval (CI) = 0.62-0.91) and 24% fewer readmissions at 180 days (RR = 0.76, 95% CI = 0.64-0.90). The majority of studies reported statistically significant shorter time to readmission, shorter rehospitalization, and lower costs of postdischarge care among discharge planning interventions with caregiver integration.; Conclusion: For older adults discharged to a community setting, the integration of caregivers into the discharge planning process reduces the risk of hospital readmission.

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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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Keeping the person with dementia and the informal caregiver together: a systematic review of psychosocial interventions

Background: Social support, relationships, and closeness are emphasized as important by both people with dementia and their informal caregivers. Psychosocial interventions might be helpful to reinforce the relationship between a person with dementia and his or her informal caregiver. Therefore, this review explores what types of psychosocial interventions have been provided for people with dementia and their informal caregivers together, and the effectiveness of these interventions.; Methods: PubMed, PsychInfo, Cinahl, and references of key papers were searched for studies describing a psychosocial intervention for people with dementia and their informal caregivers together. Psychosocial interventions were defined as focusing primarily on psychological or social factors.; Results: A total of seven publications describing six studies were identified as eligible for inclusion in this review. Interventions ranged in focus from skills training to viewing/making art. The methodology of the studies varied, especially regarding the outcome measures used. The results of individual studies were mixed. A narrative synthesis of the included studies is given.; Conclusion: Although caregiving dyads emphasize the importance of their relationship, this is mostly not taken into consideration in the design and effect evaluations of the interventions. Improved research is needed on this subject, which focuses on people with dementia living in the community and those living in nursing homes.

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Web-Based Interventions to Improve Mental Health, General Caregiving Outcomes, and General Health for Informal Caregivers of Adults With Chronic Conditions Living in the Community: Rapid Evidence Review

Background: Most adults with chronic conditions live at home and rely on informal caregivers to provide support. Caregiving can result in negative impacts such as poor mental and physical health. eHealth interventions may offer effective and accessible ways to provide education and support to informal caregivers. However, we know little about the impact of Web-based interventions for informal caregivers of community-dwelling adults with chronic conditions.; Objective: The purpose of this rapid evidence review was to assess the impact of Web-based interventions on mental health, general caregiving outcomes, and general health for informal caregivers of persons with chronic conditions living in the community.; Methods: A rapid evidence review of the current literature was employed to address the study purpose. EMBASE, MEDLINE, PsychInfo, CINAHL, Cochrane, and Ageline were searched covering all studies published from January 1995 to July 2016. Papers were included if they (1) included a Web-based modality to deliver an intervention; (2) included informal, unpaid adult caregivers of community-living adults with a chronic condition; (3) were either a randomized controlled trial (RCT) or controlled clinical trial (CCT); and (4) reported on any caregiver outcome as a result of use or exposure to the intervention.; Results: A total of 20 papers (17 studies) were included in this review. Study findings were mixed with both statistically significant and nonsignificant findings on various caregiver outcomes. Of the 17 included studies, 10 had at least one significant outcome. The most commonly assessed outcome was mental health, which included depressive symptoms, stress or distress, and anxiety. Twelve papers examined the impact of interventions on the outcome of depressive symptoms; 4 found a significant decrease in depressive symptoms. Eight studies examined the outcome of stress or distress; 4 of these found a significant reduction in stress or distress as a result of the intervention. Three studies examined the outcome of anxiety; 2 of these found significant reductions in anxiety. Other significant results of the interventions were seen in the outcomes of caregiver gain (ie, positive aspects of caregiving), knowledge, bonding, reduction of anger-hostility, and negative mood. Based on this review, it is not possible to determine which interventions were most effective since studies differed in their design, sample, and intervention. Study results suggest that Web-based interventions may result in reduced depressive symptoms, anxiety, and stress or distress among informal caregivers of adults with chronic conditions in the community.; Conclusions: This is the first review assessing the impact of Web-based technologies on mental health, general caregiving outcomes, and general health for caregivers of adults with chronic conditions living in the community. Further rigorous research is needed that includes adequately powered studies examining the critical components of the intervention and the dosage needed to have an effect.

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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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Caregiver Burden in Parkinson Disease: A Critical Review of Recent Literature

Burden is a negative psychological state induced in caregivers by the demands of providing care to a person with an illness or a disability. Managing caregiver burden in Parkinson disease (PD) is significant because informal caregivers make a substantial contribution to the well-being of persons with PD, incurring financial, social, and personal losses. Failure to recognize and manage caregiver burden may lead to burnout and premature institutionalization of the person with PD. We conducted a comprehensive literature review to identify and summarize factors that may amplify burden, including motor and nonmotor symptoms of PD, caregiver psychiatric symptoms, and caregiver coping style. We review instruments designed to sample the construct of burden among caregivers and evaluate interventions that may reduce burden, either by directly targeting caregivers or by treating PD symptoms associated with burden. We aim to provide a concise synopsis of these issues for the clinician or researcher working with this population in order to facilitate recognition of caregiver burden, provide accurate assessment, administer appropriate interventions, and stimulate further research in this area.

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Policy Measures to Support Palliative Care at Home: A Cross-Country Case Comparison in Three European Countries

Context: The proportion of people in need of palliative care worldwide is rising, and the majority wish to receive this care at home. Many countries have created policy measures to support palliative care at home.; Objective: To list and compare existing policy measures designed to support palliative care at home in addition to available primary care services in Belgium, France, and Germany.; Methods: A cross-country case comparison based on expert consultation, governmental policy documents, and relevant scientific literature.; Results: All three countries have policy measures that allow informal caregivers to adapt their working patterns or take leave of absence to provide care without losing employee rights; however, only Belgium offers specific paid palliative care leave. All three countries offer various allowances to people who are dying at home and their caregivers. Cost-reductions for out-of-pocket expenses are available, based on the level of care dependency in Germany and on prognosis in Belgium, but are not provided in France. Mobile home support teams exist in all three countries and are free of charge for patients and caregivers; but only in Belgium and Germany, there are specialist multidisciplinary palliative home care teams. Belgium and Germany provide respite care for palliative patients.; Conclusion: European countries with similar contextual characteristics offer comparable policy measures to support palliative care at home in addition to the available primary care services. However, important differences exist in the criteria for access and the extent of what is offered.

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Supporting carers of people with dementia: what is effective?

Carer stress is well documented, especially in those caring for individuals with dementia. A recommendation of all national dementia strategies is to provide excellent support and information to informal carers of people with dementia. NICE guidance suggests that a range of tailored interventions, including psychological input, psychoeducation and training courses, should be offered to reduce caregiver burden and stress, although good-quality outcome-based evidence is lacking. On the basis of a narrative review of the literature, we describe individual and multicomponent carer support packages and discuss their evidence base, reflecting on outcomes for carers. Multicomponent interventions have the best evidence for effectiveness. 

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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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Informal caregiving in COPD: A systematic review of instruments and their measurement properties

Background: Increasing symptoms and activity restriction associated with COPD progression greatly impact on the lives of their informal caregivers, who play a vital role in maintaining their health. An understanding of this impact is important for clinicians to support caregivers and maintain a viable patient environment at home. This systematic review aimed to identify the instruments commonly used to assess informal caregiving in COPD and describe their measurement properties in this population.; Methods: Searches were conducted in PubMed, Scopus, Web of Science, CINAHL and PsycINFO and in references of key articles, until November 2016 (PROSPERO: CRD42016041401). Instruments used to assess the impact of COPD on caregivers were identified and their properties described. Quality of studies was rated using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. Quality of the measurement properties of instruments was rated as 'positive', 'negative' or 'indeterminate'.; Results: Patients cared for, had moderate to very severe COPD and the sample of caregivers ranged from 24 to 406. Thirty-five instruments were used in fifty studies to assess caregivers' psychological status and mood (9 instruments), burden/distress (12 instruments), quality of life (5 instruments) or other (9 instruments). Eighteen studies assessed the measurement properties of 21 instruments, most commonly hypothesis testing (known validity) and internal consistency. Study quality varied from 'poor' to 'fair' and with many properties rated as 'indeterminate'.; Conclusions: Although several instruments have been used to assess the impact of COPD on caregivers, an increased understanding of their properties is needed before their widespread implementation.

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Discussion Paper 10 Rural Carers in Ireland: Challenges and Opportunities

Traditionally, the majority of the population of Ireland have lived in rural areas outside of large towns and cities. However, this has changed over time, and in 2016 just over 37% of the population lived in an ‘aggregate rural area’ – which is an area of less than 1,500 inhabitants. The percentage of family carers living in these same rural aggregate areas is higher, at almost 42%.

The National Carers Strategy (2012) identifies ‘rural carers’ as a ‘subgroup’ of family carers (along with male carers, young carers and older carers) whose needs must be specifically addressed. Specific challenges face family carers living in rural or sparsely inhabited areas. While there are family carer support organisations across the country, operating and providing supports nationwide, not all of the challenges facing family carers can be addressed by support organisations alone.

This paper outlines some of these key issues, investigates some of the international research and responses to rural family carer challenges, and sets out some additional responses which are necessary in an Irish context.

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Research on Family Caregiving Support in the United States: A Strategic Plan

Research on Family Caregiving Support in the United States: A Strategic Research Plan is the product of an iterative, multi-layered process involving multiple stakeholders including family caregivers, persons with disabilities, health and social welfare professionals, policymakers, and researchers. Divided into four parts, this document outlines the next steps in researching family support by reviewing the current state of the field and identifying future directions.  

As a roadmap for future research on family support in the US, this document outlines opportunities for progress in each of four areas (exploration and discovery in family caregiving experiences; family support interventions; family support policy, programs, and services; and research methods in family support). Research on Family Caregiving Support in the United States: A Strategic Research Plan encourages funders and researchers to move forward in family support research by addressing topics and populations previously neglected, focusing on interventions and programs/policy, and supporting the use of novel methods.

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Global state of care

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

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

  • Financial support

  • Working arrangments

  • Pension credits

  • Respite care

  • Information & training

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

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

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The effect of Liver Transplantation on the quality of life of the recipient's main caregiver - a systematic review

Liver transplantation ( LT) is a transformative, life-saving procedure with life-long sequale for patients and their caregivers. The impact of LT on the patient's main caregiver can be underestimated. We carried out a systematic review of the impact of LT on the Health-Related Quality of Life ( HRQL) of LT patients' main caregivers. We searched 13 medical databases from 1996 to 2015. We included studies with HRQL data on caregivers of patients following LT then quality assessed and narratively synthesized the findings from these studies. Of 7076 initial hits, only five studies fell within the scope of this study. In general, they showed caregiver burden persisted in the early period following LT. One study showed improvements, however, the other four showed caregiver's levels of stress, anxiety and depression, remained similar or got worse post- LT and remained above that of the normal population. It was suggested that HRQL of the patient impacted on the caregiver and vice versa and may be linked to patient outcomes. No data were available investigating which groups were at particular risk of low HRQL following LT or if any interventions could improve this. The current information about LT caregivers' needs and factors that impact on their HRQL are not adequately defined. Large studies are needed to examine the effects of LT on the patients' family and caregivers to understand the importance of caregiver support to maximize outcomes of LT for the patient and their caregivers. 

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Effect of multicomponent interventions on competence of family caregivers of people with dementia: A systematic review

Aims and objectives: This review aims to summarise and evaluate multicomponent interventions focused on improving the competence of family members of people with dementia (PwD) who undertake the caregiving tasks. Background: Caregiver competence is essential for family members of PwD acting as caregivers. Competence affects the physical and mental health of both PwD and caregivers. Many kinds of multicomponent interventions are used to improve caregiver competence. Design: A systematic review. Methods: A literature search from six databases was conducted. Articles published until January 2017 were screened. Intervention studies that measured caregiver competence of family members of PwD as an outcome were included. The Oxford Center Evidence‐based Medicine criteria and the Cochrane Handbook for Systematic Reviews of Interventions were used for quality assessment. Results: Fifteen studies were included, and number of participants was 1096. The characteristics of the included studies and key findings were analysed. Multicomponent interventions may improve the family caregivers’ competence. Caregivers in the intervention group were confident and skilful in managing their role. Conclusion: The intervention design, treatment content and length and intensity of the intervention varied in the included studies. Given that heterogeneity was high, combining these results via narrative synthesis is more appropriate than a meta‐analysis. The current study provides recommendations regarding the formulation and implementation of interventions based on relevant literature. In view of existing research, researchers should conduct an in‐depth study in this area and provide evidence‐based interventions to support family members caring for PwD. Relevance to clinical practice: The competence of family caregivers is essential for the life quality of PwD. To promote the health of the family caregiver and PwD, multicomponent interventions may be appropriate for nurses to practice.

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Hospital discharge processes involving older adults living with dementia: An integrated literature review

Aims and objectives: To identify barriers and facilitators to engagement of people with dementia and family carers in planning for discharge from hospital. Background: Hospital discharge can be particularly challenging for older people with dementia. To assist in the development of bespoke discharge processes that address the unique needs of older people with dementia, an integrated review of the literature was undertaken. Design and methods: A four‐stage integrative review framework guided the review. Three search strategies were employed: a computerised database search, a hand search of reference lists and forward citation searching. Paired members of the research team reviewed eligible full‐text papers. The methodological quality of each paper was assessed using the Mixed‐Methods Assessment Tool, followed by data extraction and completion of summary tables. Within and across study analysis and synthesis of study findings was undertaken using thematic synthesis. Results: Fifteen papers were included in the review. Most identified barriers to collaborative discharge processes related to distributed responsibility for discharge, risk averse approaches to discharge, limited family carer confidence, and limited validation of assumptions about family competency to manage at home. Facilitators included supported clinician and family carer engagement, and maintaining independence for activities of daily living. Relevance to clinical practice: Reflective analysis of discharge decisions, focused on risk and possible risk aversion, can assist teams to evaluate the quality of their discharge decisions. The use of formal communication strategies such as a patient/family‐held journal of the hospital experience and a structured family meeting early in the hospital admission can enhance family engagement in discharge planning. Prevention of functional and cognitive decline is emerging as critical to improving hospital discharge outcomes. 

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Quality of Life and African American Women Who are Family Caregivers: A Literature Review with Implications for Psychiatric Mental Health Advanced Practice Registered Nurses

Purpose: To identify factors affecting the quality of life (QOL) of African American women (AAW) family caregivers of individuals with kidney failure. Methods: Ferrans' Conceptual Model of QOL provided the framework for this literature review. Included studies were (a) peer- reviewed, (b) published within the last ten years, (c) written in English, and (d) examined QOL of AAW family caregivers. Using CINAHL© and PubMed©, we found 14 studies that described factors associated with these caregivers' QOL. Scope: Few studies document the QOL of AAW who are family caregivers, especially in the context of kidney failure. Psychiatric Mental Health Advanced Practice Registered Nurses need to learn about the factors influencing the QOL of these caregivers. Results: No studies were found within the last ten years that explored the QOL of AAW family caregivers of individuals with kidney failure. Findings reflected the QOL of AAW family caregivers in the context of other chronic conditions. Various factors such as stress, insomnia, and employment were linked to an impaired QOL. Implications for practice, research and education for PMH-APRNs are suggested. Conclusion: PMH-APRNs are uniquely trained to address many factors that affect the QOL of these caregivers and may provide holistic care aimed at promoting satisfactory QOL for these caregivers. 

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eHealth interventions for family carers of people with long term illness: A promising approach?

Family carers of people who have long term illness often experience physical and mental health morbidities, and burden. While there is good evidence to suggest that carers benefit from psychosocial interventions, these have primarily been delivered via face-to-face individual or group-formats. eHealth interventions offer a novel, accessible and self-paced approach to care delivery. Whether these are effective for carers' wellbeing has been little explored. This paper reports the first comprehensive systematic review in this area. A total of 78 studies, describing 62 discrete interventions, were identified. Interventions commonly aimed to promote carers' knowledge, self-efficacy, caregiving appraisal, and reduce global health morbidities. Interventions were offered to carers of people with a wide range of long term illness; dementia has been the most researched area, as reported in 40% of studies. Clinical and methodological heterogeneity in interventions precluded meta-analyses, and so data were analysed narratively. The most popular approach has comprised psychoeducational interventions delivered via an enriched online environment with supplementary modes of communication, such as network support with professionals and peers. Overall, carers appreciate the flexibility and self-paced nature of eHealth interventions, with high rates of satisfaction and acceptability. More studies using robust designs are needed to extend the evidence base.

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Interventions That Support or Involve Caregivers or Families of Patients with Traumatic Injury: a Systematic Review

Background: Almost 40 million family caregivers care for a loved one with severe physical or cognitive impairments. The purpose of this review is to summarize evidence about the benefits of interventions to support or involve family members/caregivers of patients with trauma-related injury on caregiver, patient, and household outcomes. Methods: English-language peer-reviewed publications in MEDLINE, CINAHL, and PsycINFO from 1995 through December 2016 were identified. Eligible studies included RCT or quasi-experimental studies evaluating interventions designed to support or involve caregivers or family members of patients with TBI, PTSD, or polytrauma. Abstractions were completed by one reviewer and checked by a second; two reviewers independently assessed risk of bias using the Cochrane Effective Practice and Organization of Care Review Criteria. Results:  Thirteen studies (n = 9 TBI; n = 4 PTSD, n = 0 polytrauma) evaluated psychological or rehabilitation interventions involving caregivers. Interventions did not improve TBI patients' functional status (standardized mean difference [SMD], 0.29 [95% confidence interval [CI], - 0.51 to 1.08]) or psychological symptoms (SMD - 0.25, CI - 0.62 to 0.12). Qualitative analysis shows potential intervention benefit for TBI symptoms. Interventions did not improve TBI caregiver psychological symptoms (SMD - 0.26, CI - 0.57 to 0.05); however, qualitative analysis suggests mixed effects for caregiver burden and quality of life. Positive intervention effects on patients' PTSD symptoms, mental health service use, and PTSD caregivers' psychological symptoms were identified with certain interventions. Strength of evidence ranged from moderate to very low. Discussion: Studies showed mixed patterns of intervention effects on caregiver and patient outcomes; evidence about intervention impact is inconclusive. This review is the first to identify caregiving interventions for patients with TBI and polytrauma and extends past reviews about patients with PTSD. Limitations include a small evidence base, low study quality, disparate methods, varied outcome measures, and high heterogeneity. PROSPERO Registration CRD42017053516. 

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Spiritual Distress Within Inpatient Settings-A Scoping Review of Patients' and Families' Experiences

Context: Spiritual distress contributes to patients' and families' experiences of care. Objectives: To map the literature on how seriously ill patients and their family members experience spiritual distress within inpatient settings. Methods: Our scoping review included four databases using search terms "existential" or "spiritual" combined with "angst," "anxiety," "distress," "stress," or "anguish." We included original research describing experiences of spiritual distress among adult patients or family members within inpatient settings and instrument validation studies. Each study was screened in duplicate for inclusion, and the data from included articles were extracted. Themes were identified, and data were synthesized. Results: Within the 37 articles meeting inclusion criteria, we identified six themes: conceptualizing spiritual distress (n = 2), diagnosis and prevalence (n = 7), assessment instrument development (n = 5), experiences (n = 12), associated variables (n = 12), and barriers and facilitators to clinical support (n = 5). The majority of studies focused on patients; two studies focused on family caregivers. The most common clinical settings were oncology (n = 19) and advanced disease (n = 19). Terminology to describe spiritual distress varied among studies. The prevalence of at least moderate spiritual distress in patients was 10%-63%. Spiritual distress was experienced in relation to self and others. Associated variables included demographic, physical, cognitive, and psychological factors. Barriers and facilitators were described. Conclusion:  Patients' and families' experiences of spiritual distress in the inpatient setting are multifaceted. Important gaps in the literature include a narrow spectrum of populations, limited consideration of family caregivers, and inconsistent terminology. Research addressing these gaps may improve conceptual clarity and help clinicians better identify spiritual distress. 

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Interventions to Support Carers of People with Dementia

This review considers what works to support carers of older people with dementia to prevent or delay entry into residential aged care. It identified 44 interventions (most from overseas) that supported carers of people with dementia, of which 26 were from studies assessed as high quality and so were the focus of the analysis.

Interventions that support carers of older people with dementia show limited effectiveness in achieving the outcome of preventing or delaying entry into residential care. Of the 26 interventions in high-quality studies, only three were found to be effective. Two involved counselling and the other involved case management.

None of the effective interventions are considered appropriate for adoption at this stage for the purpose of preventing or delaying entry into residential aged care. The overall evidence of effectiveness for the counselling interventions was inconclusive as some adaptations were ineffective. But there may be value in further testing. One adaptation had success in the Australian context albeit with important caveats. The case management intervention had several context-specific aspects that limit its transferability to Australia.

Overall, why some interventions were effective in delaying or preventing entry to residential care and others were not is unclear. The interventions often have multiple components, making it hard to isolate the characteristics that influence residential care placement. In addition, many of the components in effective interventions also existed in those that were not. And context — in relation to place and time — matters.

Reducing the risk and delaying the progression of dementia may be a more fruitful avenue to prevent or delay entry into residential care than interventions to support carers.

But the finding of limited effectiveness of interventions to support carers does not suggest that dementia-related funding for carer services, resources and research should be reduced. There are gaps in the research (in particular, studies for respite services). And supporting carers of people with dementia may have important benefits beyond keeping the person with dementia at home.

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Exemplar models and support for older carers and carers of people with dementia: informing commissioning

This is the report of a project commissioned by NHS England in support of its Commitment to Carers programme. The focus of the work was to scope exemplar models of support for older carers, and carers of people with dementia (of any age). The project reviewed existing literature and knowledge and used this as the foundation for examining developments with invited third sector organisations using an on-line questionnaire and additional semi-structured interviews. The work took place between May 2017 and March 2018 and included a consultation workshop in February 2018 with NHS England and other key stakeholders to refine messages and conclusions. The report describes the work undertaken and presents an analysis of findings, together with conclusions and recommendations for NHS England. 

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Family intervention for caregivers of people with recent‐onset psychosis: A systematic review and meta‐analysis

Aim: We aimed to systematically review the evidence of the effectiveness of family interventions for caregivers of people with recent‐onset psychosis compared with usual psychiatric care. A secondary objective was to directly compare the effects of different types of family interventions. Methods: MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials (CENTRAL), CINAHL Complete and EBSCOhost were searched to identify relevant randomized controlled trials. Trial data were extracted following the procedures described in the Cochrane Handbook of systematic reviews. Random‐effects models were used to pool the intervention effects. Results: Twelve studies including 1644 participants were included in this review. With the exception of a high risk of performance bias inherent to the nature of the psychosocial interventions, the studies had an overall low or unclear risk of bias, suggesting that sources of bias are unlikely to lower confidence in the estimate of intervention effects. Meta‐analyses were conducted for 4 different participant outcomes reported in 9 studies. Compared with usual psychiatric care, family intervention was more effective in reducing care burden over all follow‐up periods. Family intervention was also superior to usual care with regards to caregiving experience in the short term and improved utilization of formal support and family functioning over longer‐term follow up. Mutual support is more effective than psychoeducation in improving family functioning when measured 1 to 2 years after the intervention but had equivalent effects on utilization of formal support services. Conclusions: This review provides evidence that family intervention is effective for caregivers of recent‐onset psychosis, especially for care burden where the positive effects are enhanced over time. 

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Who Is My Brother's Keeper Now? Caregiving: Yours, Mine, and Ours

In 1967, the concept of family caregiving was not talked about. It was a responsibility assumed by a spouse, parent, or child, the overwhelming majority of whom were female. There was no body of knowledge, nor was it covered in the media. This article summarizes the evolution of caregiving in the United States over the past fifty years, including: increased awareness of caregiving; federal development of support services for caregivers; legislation; impacts on caregiver health; workplace support for caregivers; technological support; and research. 

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Discussion Paper 6: Disability and Family Carer Policy - Challenges and Responses

A working definition of ‘disability’ is crucial to any research, policy development or service provision in the field. There are many definitions of disability (Iezzoni & Freedman, 2008), some directly contradicting others. These differences originate from the different theoretical viewpoints which have been and are still being used to articulate what ‘disability’ is. These ‘competing’ models – though such competition is not explicitly stated in many cases – contribute to the confusion which often accompanies policy work and service provision in the disability-specific sector and those sectors closely connected – such as family caring.

Recent developments and discussions within the disability and family caring sectors in Ireland only highlight the challenges of obtaining a general consensus on the conceptualisation of disability.

The purpose of this paper, as with all papers in this series, is to ask questions with the aim of stimulating debate and critical thinking within the sector. This is particularly true as regards questions that may be uncomfortable for some readers.

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Discussion Paper 9: Family caring and minority populations

The aim of this series is to introduce a topic for thought and debate within the Family Caring sector. In particular, the series focuses on emerging, under-discussed, and perhaps difficult issues, as a way to stimulate debate.

Much of the supports and research undertaken with and about family carers presupposes that family carers in Ireland are white, heterosexual and Catholic. Statistically, that group is indeed the largest cohort of family carers. However, latest figures from Census 2016 illustrates the breadth of diversity within family carers in Ireland. Whilst many of the challenges faced by family carers from minority populations (such as those from ethnic minorities, religious minorities and those from the LGBT community) will be similar to those faced by the general population, each has particular issues acting as further complicating factors – such as racism, homophobia, or perhaps a lack of adequate access to information. Even when the problems faced are the same, the preferred solutions for these groups may not be.

This latest paper in the Care Alliance Discussion Paper series explores these issues and suggests some policy and support changes which may be useful to consider. 

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Family Matters: Counting Families In

This report seeks to highlight the perspectives of family carers within the development of a national strategy for people with learning disabilities. The report represents a synthesis of a broad range of views, collected through consultation workshops, correspondence, conversations with family carers, and a review of the relevant  literature. 

Families have an important and unique contribution to the discussion of the future direction of services for men and women with learning disabilities. They are the only people who will have a continuous relationship with the person with a learning disability from childhood to adulthood.

This contribution needs to be acknowledged, valued, listened to, and acted upon.

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Where are we now? Twenty-five years of research, policy and practice on young carers

It is more than 25 years since the critical dialogue on young carers was played out in the pages of this journal (see Morris and Keith, 1995; Aldridge and Becker, 1996). Since that time, research evidence has given us a clearer picture of the extent of young caring in the UK and its consequences for children and families, including two new national studies that focus on the prevalence and impact of young caring in England. The introduction of the Care Act, 2014 and the Children and Families Act, 2014 also places new duties on professionals to identify and support young carers and their families. However, this increased focus, not only in policy and practice but also in terms of public awareness, has created a number of dilemmas and challenges for health and social care professionals, whose duty it is to identify and support young carers. These challenges, to a large extent, both mirror and advance issues raised in the original dialogue on young carers in the mid-1990s. They centre on the drive to generate data on the numbers of young carers to support policy directives and service delivery and, some have argued – in the current climate of serious fiscal retrenchment and cuts to youth services – on promoting the needs of one group of vulnerable children and young people over other groups of children in need. This article considers some of these challenges and dilemmas. 

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Family caregiver recruitment via social media: challenges, opportunities and lessons

Background: Illness blogs are a way seriously ill people communicate publicly about their illness journey. As communication about serious illness increases on social media, it is important to evaluate how this affects the family caregiver. However, identifying and accessing family caregivers remains challenging, especially via social media.; Purpose: The aim of this article is to report the opportunities, challenges and lessons learned from using social media to recruit family caregivers.; Methods: Recruitment methods included posting study invitations on illness blogs, advertising through Facebook and placing study fliers in the community.; Results: Using social media to recruit was inexpensive and provided a wide geographical reach. One important finding was discovering the importance of using language in the recruitment materials that family caregivers could identify with to help deem themselves as eligible to participate in the study.

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