Cross-country variations in the caregiver role: evidence from the ENTWINE-iCohort study.

BACKGROUND: Globally, economically developed countries face similar ageing demographics and the challenge of a 'care gap', yet they vary due to different care and formal support systems, and different cultural and societal norms around illness and care. The aim of this exploratory study was to examine cross-country variations in caregiver motivations, willingness, values, meaning in life, illness beliefs, and experiences of wellbeing, gain, health-related quality of life, burden and depression, across 6 European countries and Israel. Cross-country differences in the above-mentioned informal caregiver experiences are rarely described. METHODS: An online survey (ENTWINE-iCohort) was conducted using validated measures wherever possible. This paper utilises data from 879 caregivers and seven countries (Greece, Italy, the Netherlands, Poland, Sweden, the UK, and Israel). RESULTS: No consistent finding supporting the concurrent relationship between caregiver support policies/country culture and caregiver motivations/willingness was found. Caregivers in countries typically characterised by individualist cultures reported lower familism, higher self-enhancement values, and greater perceived illness threat compared to more collectivist countries. Search for meaning was higher in poorer countries than in wealthier countries. Higher negative caregiver experiences (e.g., burden) and lower positive experiences (e.g., wellbeing) were generally observed in countries with underdeveloped caregiver support as compared to countries with more developed formal support systems. CONCLUSIONS: Cross-country variations can be explained to varying degrees by national policies around care (or their absence) and country cultural contexts. The results emphasise the importance of formal support services for achieving positive caregiver experiences, and help inform the development of policies and measures to support caregivers in Europe and Israel.

Beyond social prescribing-The use of social return on investment (SROI) analysis in integrated health and social care interventions in England and Wales: A protocol for a systematic review.

With increasing costs of healthcare in England and Wales following the COVID-19 pandemic, finding alternatives to traditional medical interventions is more important than ever. Social prescribing provides a way of addressing health and well-being through using non-medical methods that may help relieve costs to the NHS. Evaluating interventions, such as social prescribing, which have high social (but not easily quantifiable) value, can be problematic. Social return on investment (SROI) is a method of assigning monetary values to both social value as well as traditional assets, so provides a way of evaluating social prescribing initiatives. This protocol outlines the steps that will be taken in a systematic review of the SROI literature surrounding social prescribing-type integrated health and social care interventions based in the community in England and Wales. Online academic databases such as PubMed Central, ASSIA and Web of Science will be searched, as will grey literature sources such as Google Scholar, the Wales School for Social Prescribing Research (WSSPR) and Social Value UK. Titles and abstracts from the articles returned by the searches will be reviewed by one researcher. Those selected for full text review will be independently reviewed and compared by two researchers. Where the researchers disagree a third reviewer will help resolve any differences. Information collected will include identifying stakeholder groups, assessing the quality of SROI analyses, identifying intended and unintended changes of social prescribing interventions, and comparing social prescribing initiatives in terms of SROI costs and benefits. Quality assessment will be independently conducted on the selected papers by two researchers. The researchers will discuss to obtain consensus. Where there is disagreement, a third researcher will resolve these cases. A pre-existing quality framework will be developed and used to assess the quality of the literature. Protocol registration Prospero registration number: CRD42022318911.

Cultural and societal motivations for being informal caregivers: a qualitative systematic review and meta-synthesis.

ABSTRACTInformal caregiving constitutes the mainstay of a society's care supply. Motivations for caring and continuing to provide care are crucial to understanding the nature of caregiver experiences and their relationship with the person/people they support. This systematic review of qualitative evidence examines determinants of motivations and willingness to provide informal care. One hundred and five qualitative studies published before August 2019 and fitting the inclusion criteria were identified, 84 of them pertaining to cultural and societal motivations for caregiving. Grounded theory-based, thematic synthesis was conducted. Cultural and societal factors strongly underpinned motivations and willingness for informal caregiving. The main cultural motives for caregiving were cultural values and beliefs encompassing the ethnocultural context of the caregiving role, culture-specific norms, cultural and spiritual beliefs, illness beliefs and socialisation. Societal norms and perceived expectations, such as gendered roles, norms and expectations of caregiving, and perceptions of health and social care services further shaped caregiver motivations and willingness to provide care. These meta-synthesis findings contribute towards novel understandings about the cultural and societal aspects shaping informal care provision. These findings bear important implications for theory, research, policy and practice; all of which contributing to the issue of the sustainability of informal care from a 'macro' perspective.

Why do they care? A qualitative systematic review and meta-synthesis of personal and relational motivations for providing informal care.

Informal caregiving is crucial to the sustainability of health and social care systems globally. With ageing populations and a rising prevalence of acute and chronic health conditions, the need for informal care is growing, making it important to understand what motivates individuals to care and to continue caring. This paper reports findings of a systematic review which examined determinants of motivations and willingness to provide informal care. A systematic search was conducted using six electronic databases and a wide range of additional sources. 105 qualitative studies published before August 2019 were included with 103 of them reporting on personal and relational motivations, and the contextual factors underpinning these. Grounded theory-based, thematic synthesis was applied to synthesise the literature. This meta-synthesis reports on findings from across the world spanning three decades, with data from over 2500 caregivers across a range of health conditions. This paper presents the relational, personal and contextual themes. It highlights the significance of reciprocity, affection, family values and caregiving obligations. Personal characteristics, finding meaning, illness perceptions, situational and temporal aspects of caregiving are also identified as important in shaping motivations and willingness to care and to continue caring. Implications for theory, research, policy and practice are discussed.

'It was just - everything was normal': outcomes for people living with dementia, their unpaid carers, and paid carers in a Shared Lives day support service.

OBJECTIVES: Short breaks support the wellbeing of people living with dementia (PLWD) and their unpaid carers. However, little is known about the benefits of community-based short breaks. The objective of this study was to conduct interviews with stakeholders of a Shared Lives (SL) day support service to explore mechanisms and outcomes for the service. The aim of the study was to refine a logic model for a SL day support service for PLWD, their unpaid carers, and paid carers. This logic model shall form the basis for a Social Return on Investment evaluation to identify the social value contributed by the service. METHODS: Thirteen interviews were conducted with service stakeholders including PLWD, unpaid carers and paid carers. Framework analysis assisted in the synthesis of the findings into a logic model. RESULTS: The logic model refined through the interviews, detailed service mechanisms (inputs, activities, outputs) and outcomes. An overarching theme from the interviews concerned the importance of triadic caring relationships, which conferred benefits for those involved in the service. CONCLUSION: SL day support fosters triadic caring relationships, and interview data suggests that these relationships are associated with meaningful outcomes for PLWD, their unpaid carers, and paid carers. We highlight the implications for policy, practice, and future research.

Informal caregiver motivations, values, challenges and gains: A photovoice and interpretative phenomenological analysis of interrelationships.

The adoption of a caregiving role in the context of illness and disability is often taken for granted. This study explores caregivers' motivations to provide care and how these relate to values, and to the challenges and gains of caregiving. Eight semi-structured interviews were conducted with caregivers and photographs were taken by caregivers to exemplify their caregiving experiences. This photo-elicitation method complemented the use of Interpretative Phenomenological Analysis when applied to verbatim transcripts. Superordinate themes included: caregiver's life story; significance of family; caregiving obligations; caring relationship; challenges and gains associated with caregiver motivations. Intrinsic and extrinsic motivations were less distinct in caregivers' lived experiences than previously suggested, and were influenced by family values and specific challenges and gains of caregiving. The coexistence of different motivations and the nature of single complex motivations is discussed. The importance of caregiver assessment and support planning, and regular breaks from caregiving are highlighted.

How Culture Shapes Informal Caregiver Motivations: A Meta-Ethnographic Review.

The provision of informal care presents a significant global challenge. To better understand how cultural factors underpin and shape motivations and willingness to provide informal care for adults, an in-depth qualitative synthesis was conducted. Six electronic databases and a wide range of additional sources were searched. Following meta-ethnographic guidelines, 37 qualitative studies were synthesised. Six main concepts were identified: cultural self-identity, which appeared as an overarching explanatory concept; cultural duty and obligations; cultural values; love and emotional attachments; repayment and reciprocity; and competing demands and roles. These concepts informed a model of cultural caregiving motivations, offering an inductive-based exploration of key cultural motivators and highlighting implications for theory development, future research, policy and practice. The model holds implications for the actual exchange of care. Caregiver motivations should not be taken for granted by healthcare or social care professionals involved in assessment and support planning, educational endeavours at a population level may support caregiving, and support should be sensitive to cultural caregiving motivations.

Planning, commissioning and delivering bespoke short breaks for carers and their partner living with dementia: Challenges and opportunities.

The importance of supporting unpaid carers for people living with dementia (PLWD) is recognised in adult social care policy both nationally and internationally. In the UK, social care legislation emphasises care and support should help people achieve the outcomes that matter to them in their life; this includes the opportunity to take a break from caring routines and responsibilities. Accordingly, there is growing policy and practice interest in short breaks provision to address the diversity of carer break needs and preferences and deliver meaningful outcomes for carers and those they support. This paper reports findings from qualitative staff interviews that offered strategic and operational insights into short breaks provision. It presents a dynamic model of the short break landscape in a region of Wales, describing factors shaping local and regional decision-making. The model identifies key challenges (barriers) and opportunities (enablers) that shape the planning, commissioning and delivery of bespoke short breaks for spousal carers and their partner living with dementia. Through highlighting the interplay between complex context-specific processes and contingences, the model informs initial theory development in short breaks provision.

Getting back to life after stroke: co-designing a peer-led coaching intervention to enable stroke survivors to rebuild a meaningful life after stroke.

Purpose: Rebuilding one's life after stroke is a key priority persistently identified by patients yet professionally led interventions have little impact. This co-design study constructs and tests a novel peer-led coaching intervention to improve post-stroke leisure and general social participation.Methods: This study followed the principles of co-design by actively engaging and harnessing the knowledge of stroke survivors in order to develop and test a peer-lead coaching intervention. Phase 1 assessed function, mood, and involvement in leisure and social activities 6 months following stroke (n = 79). Phase 2 involved semi-structured, in-depth interviews with 18 stroke survivors, and 10 family carers to explore experiences related to social and leisure participation. Phase 3 tested the co-designed peer-led coaching intervention. Data collected also included co-design feedback sessions and a training workshop with selected peer coaches and in addition, interviews with stroke survivors and their peer coaches at two time-points: following the training program (n = 5) and delivery of the intervention (n = 2).Results: A peer-coaching intervention was successfully co-designed and tested combining the use of lay knowledge sociocognitive and self-regulatory theories with principles of transformational leadership theory. Both peers and stroke survivors reported having benefited at a personal level.Conclusions: This study reports on an innovative community-based and peer-led intervention and its results have generated new evidence on how stroke survivors engage with and respond to peer coaching support. It further provides a theoretical platform for designing and implementing peer interventions. Hence, these results have the potential to inform the development of future peer coaching intervention not only for stroke rehabilitation but also for a wide range of chronic conditions.Implications for rehabilitationThe results of this co-design study, if replicated and extended, provide a theoretical framework to guide rehabilitation professionals about the optimal timing of peer-coaching interventions and contextual factors that need to be taken into account.Applying transformational leadership theory principles to the training of peers may prove useful at the time of the implementation of a coaching intervention.Peer-led coaching interventions, which are community-based and tailored to stroke survivors at the time of discharge, may help support re-engagement in social and leisure activities.

The influence of child sexual abuse on the self from adult narrative perspectives.

The impact of child sexual abuse on the adult self is not yet clearly understood. We explored adult perspectives through the use of narrative interviews (N = 30). Three key themes or views of self were identified in all narratives to varying degrees: the worthless self, the self as unknown, and the potential/developing self. Ambivalence and tension were present in all narratives. Individuals were challenged to integrate the sexual abuse experience in a constructive way and develop a more coherent perception of the self. The narrative method highlighted the dynamic nature of peoples' experiences at the same time recognizing that the narratives themselves are in progress. Reactions to disclosure, social support, and interpersonal connections are crucial at every turn.

Carer assessment: continuing tensions and dilemmas for social care practice.

Since the early 1990s, UK social care policy has committed to supporting carers. Legislation (England and Wales) over this time period has recognised the importance of separate carer assessments that take into account an individual's ability and willingness to care. This paper considers carer assessment from the perspective of social care practitioners. It reports on qualitative data from a carer research programme that spans over 20 years (1993 to present) and includes 383 in-depth interviews with social care practitioners across England and Wales. Offering unique longitudinal insights, we identify some persistent tensions associated with the translation of UK carer assessment policy into social care practice. We explore practitioners' long-standing ambivalence towards carer assessment and their reluctance to evidence carer need via a separate assessment process. Deficits relating to the conduct of carer assessment are identified. For example, the reliance on structured, problem-focused assessment protocols that restrict discussions to the personal care aspects of caring and fail to capture the complex, diverse lives that carers lead. Carer assessments do not reflect the reciprocal nature of many caring relationships, as a one-way direction of care is assumed. They do not take into account the broader support network of individuals who may be involved in helping someone with complex care needs. Carer willingness to care continues to be taken for granted and planning for the future is a significant gap in carer assessment practice. The proposed changes to the social care systems across England and Wales provide a timely opportunity to review the process and conduct of carer assessment. Policy guidance needs to clarify the links between service user and carer assessments and the way these align within broader assessment and care management frameworks. Assessment tools that encourage a narrative approach to carer assessment and capture the affective aspects of care-giving could benefit future practice.

Improving skills and care standards in the support workforce for older people: a realist review.

INTRODUCTION: In the context of a population that is growing older, and a number of high-profile scandals about care standards in hospital and community settings, having a skilled and knowledgeable workforce caring for older people is an ethical and policy imperative. Support workers make up the majority of the workforce in health and social care services for older people (aged 65 years and over), and yet little is known about the best way to facilitate their development. Given this gap, this review will draw on evidence to address the question: how can workforce development interventions improve the skills and the care standards of support workers within older people's health and social care services? METHODS AND ANALYSIS: As we are interested in how and why workforce development interventions might work, in what circumstances and with whom, we will conduct a realist review, sourcing evidence from health, social care, policing and education. The review will be conducted in four steps over 18 months to (1) construct a theoretical framework, that is, the review's programme theories; (2) retrieve, review and synthesise evidence relating to interventions designed to develop the support workforce guided by the programme theories; (3) 'test out' our synthesis findings and refine the programme theories, establish their practical relevance/potential for implementation and (4) formulate recommendations about improvements to current workforce development interventions to contribute to the improvement of care standards in older people's health and social care services, potentially transferrable to other services. ETHICS AND DISSEMINATION: Ethical approval is not required to undertake this review. Knowledge exchange activities through stakeholder engagement and online postings are embedded throughout the lifetime of the project. The main output from this review will be a new theory driven framework for skill development for the support workforce in health and social care for older people. TRIAL REGISTRATION NUMBER: CRD42013006283.

Carers with chronic conditions: changes over time in their physical health.

OBJECTIVES: To explore the experiences of individuals with chronic conditions who are also caring for another person, usually a family member. METHOD: A postal questionnaire was distributed to carers across Wales on three occasions approximately 18 months apart. It included the SF-12v2 together with fixed-choice and open-ended questions relating to carer demographics, carer assessment, support needs, services received and care recipient's medical condition. A sub-sample of these carers was invited to take part in face-to-face interviews to allow for more in-depth exploration of their circumstances. RESULTS: The carers with chronic conditions experienced a decline in their physical health over time whereas the physical health of carers without a chronic condition remained stable. There was also evidence of carers neglecting their own health because of their caring responsibilities. Despite their health problems, over time the carers with chronic conditions received no more support than other carers. DISCUSSION: This article indicates that there are carers who are themselves suffering from a physical condition or conditions that suggest they are in need of care. Despite these difficulties, these carers are caring for people with quite severe conditions, without any help above that available to other carers.

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

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

'Confidentiality smokescreens' and carers for people with mental health problems: the perspectives of professionals.

This paper reports on some of the findings from a collaborative study funded by the Big Lottery and led by Crossroads Caring for Carers about carers for people with mental health problems. The protection and use of information in mental health are firmly rooted in ethics and professional codes, law and policy, as well as values and professional practice. While government initiatives have attempted to augment the role and rights of carers, policy guidance involving information sharing between professionals and carers has failed to deal with the practical dilemmas of patient confidentiality. Professional codes and training neither explore nor develop the moral and ethical ground that stands between the service user's need for privacy and the carer's need for information. Policy and training guidance on confidentiality is scattered, ambiguous, confusing for professionals and inconsistent. There is uncertainty in practice about the information that professionals may share, and many professionals do not take into account carers' rights, not least to basic information to help them care for service users. 'Confidentiality smokescreens' may sometimes lead to information being withheld from carers. Professionals sometimes find it easier and safer to say nothing. In order to explore these issues from the perspectives of professionals, 65 participants were interviewed. The sample included directors and senior staff from the health, social care and voluntary sectors. Respondents were asked to comment at length on their understanding of confidentiality and information sharing with carers. Findings highlight confidentiality smokescreens that erect barriers that limit effective information sharing; issues involving confidentiality, risk management and carers in crisis; examples of good practice; and the need for the training of professionals on confidentiality issues and the rights of carers. This paper explores the challenge of confidentiality smokescreens from the perspective of professionals, and draws out implications for professional practice and training.

Invisible Children: Young Carers of Parents with Mental Health Problems - The Perspectives of Professionals.

This study explored professional views about the needs of young carers of adults with mental health problems. Sixty five participants were interviewed and included professionals from the health, social care and voluntary sectors. Respondents were asked to comment on their understanding of the needs of young carers and appropriate methods or interventions to address these needs. Findings include: young carers'perceived isolation, restricted opportunities and stigma; fears involving child protection and family separation; and examples of good professional practice upon which to build.