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.

The associations of dyadic coping strategies with caregiver's willingness to care and burden: A weekly diary study.

This weekly diary study investigated associations of weekly dyadic coping strategies with caregivers' willingness to care and burden. Multilevel modelling was applied to assess between- and within-person associations for 24 consecutive weeks in 955 caregivers. Greater willingness to care was reported in weeks when caregivers used more collaborative (b = 0.26, p < 0.001) and supportive (b = 0.30, p < 0.001) strategies, whereas uninvolved coping was associated with lower willingness to care (b = -0.44, p < 0.001). Using collaborative coping strategies was associated with lower weekly burden (b = -0.13, p < 0.001). A greater burden was reported in weeks when caregivers used more uninvolved (b = 0.19, p < 0.001) and controlling (b = 0.13, p < 0.001) coping strategies. A full understanding of whether caregivers' willingness to care and burden may be improved owing to weekly dyadic coping is essential for developing timely support for caregivers.

Cohort profile: The ENTWINE iCohort study, a multinational longitudinal web-based study of informal care.

Informal care is a key pillar of long-term care provision across Europe and will likely play an even greater role in the future. Thus, research that enhances our understanding of caregiving experiences becomes increasingly relevant. The ENTWINE iCohort Study examines the personal, psychological, social, economic, and geographic factors that shape caregiving experiences. Here, we present the baseline cohort of the study and describe its design, recruitment methods, data collection procedures, measures, and early baseline findings. The study was conducted in nine countries: Germany, Greece, Ireland, Israel, Italy, the Netherlands, Poland, Sweden, and the United Kingdom. The study comprised a web-based longitudinal survey (baseline + 6-month follow-up) and optional weekly diary assessments conducted separately with caregivers and care recipients. From 14 August 2020 to 31 August 2021, 1872 caregivers and 402 care recipients were enrolled at baseline. Participants were recruited via Facebook and, to a lesser extent, via the study website or caregiver/patient organisations. Caregiver participants were predominantly female (87%) and primary caregivers (82%), with a median age of 55 years. A large proportion (80%) held at least post-secondary education, and two-thirds were married/partnered. Over half of the caregivers were employed (53%) and caring for a person with multiple chronic conditions (56%), and nearly three-quarters were caring for either a parent (42%) or a spouse/partner (32%). About three-quarters of care recipient participants were female (77%), not employed (74%), and had at least post-secondary education (77%), with a median age of 55 years. Over half of the care recipients were married/partnered (59%), receiving care primarily from their spouses/partners (61%), and diagnosed with multiple chronic conditions (57%). This study examining numerous potential influences on caregiving experiences provides an opportunity to better understand the multidimensional nature of these experiences. Such data could have implications for developing caregiving services and policies, and for future informal care research.

Does willingness to care fluctuate over time? A weekly diary study among informal caregivers.

OBJECTIVE: Informal caregivers are expected to be willing to care for relatives with care needs. Little is known about whether and how willingness to care changes over time. Using a weekly diary study, we examined changes in the willingness of 955 caregivers from nine countries. Caregivers provided information on their caregiving context, relationship type, and relationship satisfaction with the care recipient. METHODS AND MEASURES: For 24 consecutive weeks, caregivers evaluated willingness to care as it was 'right now'. RESULTS: Willingness differs from one caregiver to another (68% between-level variability) but also fluctuates in the same caregiver from week to week (32% within-level variability), with a decrease over 6 months (intercept = 8.55; slope = -0.93; p < .001). Regardless of individual differences in average willingness to care based on caregiving context and relationship satisfaction, caregivers reported decreases in willingness. Caregivers who presented one or more health conditions themselves reported higher weekly fluctuations in willingness than caregivers with no health conditions. CONCLUSION: Willingness is not a stable attitude because it decreases and caregivers experience fluctuations from week to week. A clearer understanding of weekly processes is optimal for monitoring the caregivers' well-being and tailoring interventions in line with weekly individual variations.

Social Return on Investment of Nature-Based Activities for Adults with Mental Wellbeing Challenges.

Increased time spent in nature can enhance physical health and mental wellbeing. The UK Government's '25 Year Environment Plan' recommends extending the health benefits of contact with nature to a wider group of people, including those with mental health challenges. This study investigated whether nature-based interventions (NBIs) for people with mild mental health challenges could generate a positive social return on investment (SROI). Between May 2017 and January 2019, 120 participants at six outdoor sites in Wales participated in a 6 to 12-week NBI, which consisted of a weekly 2- to 4-h session. Quantitative data were collected from baseline and follow-up questionnaires identifying participant demographics and measuring mental wellbeing, physical activity, self-efficacy, and social trust. Wellbeing valuation generated a range of social value ratios by applying the Housing Association Charitable Trust (HACT) Social Value Calculator (SVC 4.0) and HACT Mental Health Social Value Calculator (MHSVC 1.0). Seventy-four participants (62%) completed follow-up questionnaires at 6 months. SROI ratios were calculated using the SVC for physical activity, self-efficacy, and social trust. The MHSVC generated social value ratios for mental wellbeing. The base case results revealed a positive social value ratio for participants, ranging from British Pound Sterling (GBP) 2.57 to GBP 4.67 for every GBP 1 invested, indicating favourable outcomes in terms of value generated.

Barriers, facilitators, and motives to provide distance care, and the consequences for distance caregivers: A mixed-methods systematic review.

RATIONALE: Distance caregivers (DCGs) are a growing population with substantial contributions to informal care. While much is known about the provision of local informal care, evidence from the distance caregiving population is lacking. OBJECTIVE: This mixed-method systematic review examines barriers and facilitators of distance caregiving, determinants of motivations and willingness to provide distance care, and the impact on caregiver outcomes. METHODS: A comprehensive search strategy was conducted in four electronic databases and grey literature to minimise potential publication bias. Thirty-four studies, including 15 quantitative, 15 qualitative, and 4 mixed-method studies were identified. Data synthesis involved a convergent integrated approach to integrate quantitative with qualitative findings, followed by thematic synthesis to identify key themes and subthemes. RESULTS: Barriers and facilitators of providing distance care included contextual and socioeconomic aspects of geographic distance, communication and information resources, and local support networks that shaped the distance caregiver role and caregiver involvement. The main motives for caregiving given by DCGs were cultural values and beliefs, societal norms, and perceived expectations of caregiving encompassing the sociocultural context of the caregiving role. Interpersonal relationships and individual characteristics further shaped DCGs' motivations and willingness to care from a geographic distance. DCGs experienced both positive and negative outcomes as a result of their distance caretaking responsibilities including feelings of satisfaction, personal growth, and enhanced relationship with the care recipient but also high levels of caregiver burden, social isolation, emotional distress, and anxiety. CONCLUSIONS: The reviewed evidence contributes toward novel understandings about the unique nature of distance care and have important implications for research, policy, healthcare, and social practice.

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.

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.

When One Health Meets the United Nations Ocean Decade: Global Agendas as a Pathway to Promote Collaborative Interdisciplinary Research on Human-Nature Relationships.

Strong evidence shows that exposure and engagement with the natural world not only improve human wellbeing but can also help promote environmentally friendly behaviors. Human-nature relationships are at the heart of global agendas promoted by international organizations including the World Health Organization's (WHO) "One Health" and the United Nations (UN) "Ocean Decade." These agendas demand collaborative multisector interdisciplinary efforts at local, national, and global levels. However, while global agendas highlight global goals for a sustainable world, developing science that directly addresses these agendas from design through to delivery and outputs does not come without its challenges. In this article, we present the outcomes of international meetings between researchers, stakeholders, and policymakers from the United Kingdom and Brazil. We propose a model for interdisciplinary work under such global agendas, particularly the interface between One Health and the UN Ocean Decade and identify three priority research areas closely linked to each other: human-nature connection, conservation-human behavior, and implementation strategies (bringing stakeholders together). We also discuss a number of recommendations for moving forward.

A Multinational Longitudinal Study Incorporating Intensive Methods to Examine Caregiver Experiences in the Context of Chronic Health Conditions: Protocol of the ENTWINE-iCohort.

Informal caregivers are those who provide unpaid care to a relative or friend with a chronic illness, disability or other long-lasting health or care need. Providing informal care in the context of chronic health conditions presents a significant global challenge. Examination of the determinants of informal caregivers' behaviour, especially in terms of motivations and willingness to provide/receive care, is crucial to understanding the nature of caregiver and care recipient experiences. A large group of international researchers have co-operated to execute the ENTWINE iCohort-a multinational, transdisciplinary, longitudinal study incorporating intensive methods to examine caregiver experiences in the context of chronic health conditions. The aim of ENTWINE-iCohort is to investigate the broad spectrum of factors, i.e., cultural, personal, geographical, relational, psychological, and economic that may affect motivations, willingness to provide or receive care, among diverse groups of informal caregivers and their care recipients, in different countries that have different care systems. Study questionnaires will be disseminated on-line in nine countries: Germany, Greece, Ireland, Italy, Israel, the Netherlands, Poland, Sweden, and the UK. Cross-sectional and longitudinal multivariate analysis, including intensive longitudinal and dyadic data analysis will be applied to examine the relative contribution of the above factors to caregiver or care recipient wellbeing.

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

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

'Function First': how to promote physical activity and physical function in people with long-term conditions managed in primary care? A study combining realist and co-design methods.

OBJECTIVES: To develop a taxonomy of interventions and a programme theory explaining how interventions improve physical activity and function in people with long-term conditions managed in primary care. To co-design a prototype intervention informed by the programme theory. DESIGN: Realist synthesis combining evidence from a wide range of rich and relevant literature with stakeholder views. Resulting context, mechanism and outcome statements informed co-design and knowledge mobilisation workshops with stakeholders to develop a primary care service innovation. RESULTS: A taxonomy was produced, including 13 categories of physical activity interventions for people with long-term conditions. ABRIDGED REALIST PROGRAMME THEORY: Routinely addressing physical activity within consultations is dependent on a reinforcing practice culture, and targeted resources, with better coordination, will generate more opportunities to address low physical activity. The adaptation of physical activity promotion to individual needs and preferences of people with long-term conditions helps affect positive patient behaviour change. Training can improve knowledge, confidence and capability of practice staff to better promote physical activity. Engagement in any physical activity promotion programme will depend on the degree to which it makes sense to patients and professions, and is seen as trustworthy. CO-DESIGN: The programme theory informed the co-design of a prototype intervention to: improve physical literacy among practice staff; describe/develop the role of a physical activity advisor who can encourage the use of local opportunities to be more active; and provide materials to support behaviour change. CONCLUSIONS: Previous physical activity interventions in primary care have had limited effect. This may be because they have only partially addressed factors emerging in our programme theory. The co-designed prototype intervention aims to address all elements of this emergent theory, but needs further development and consideration alongside current schemes and contexts (including implications relevant to COVID-19), and testing in a future study. The integration of realist and co-design methods strengthened this study.

Motivations and willingness to provide care from a geographical distance, and the impact of distance care on caregivers' mental and physical health: a mixed-method systematic review protocol.

INTRODUCTION: Distance caregivers (DCGs) are a growing population with substantial contribution to informal care. While a reasonable amount is known on the determinants of motives and willingness to provide local informal care, and the local caregiver outcomes, reports for the distance caregiving population are lacking. An evidence synthesis of what motivates and makes DCGs willing to care from a distance and the impact of that care on their mental and physical health would highlight any gaps or consensus in knowledge. This would guide the research needed towards the development of tailored interventions, in order to support DCGs and promote the sustainability of distance care. METHODS AND ANALYSIS: This protocol adheres to Preferred Items for Reporting of Systematic Reviews and Meta-Analyses Protocols guidelines and the Joanna Briggs Institute (JBI) Methodology for mixed-method reviews. A comprehensive search strategy will be conducted in four electronic databases (CINAHL, MEDLINE, PubMed and PsycINFO). Grey literature will also be assessed to minimise publication bias. Two independent reviewers will assess each study for inclusion and any discrepancies will be resolved with the consultation of a third reviewer. Eligible studies for inclusion will be English language studies exploring the motives and willingness to care for a care recipient with a chronic disease, disability or frailty from a geographical distance; or studies focusing on the mental and physical health outcomes of DCGs. Qualitative and quantitative data will be integrated in a single qualitative synthesis following the JBI convergent integrated approach. Study quality will be assessed using the Mixed Methods Appraisal Tool version 2018. ETHICS AND DISSEMINATION: Ethical approval is not required for this study as no primary data will be collected. Findings will be disseminated through peer-reviewed publication and presentations at academic conferences and lay summaries for various stakeholders. PROSPERO REGISTRATION NUMBER: CRD42020156350.

Gaining Longitudinal Accounts of Carers' Experiences Using IPA and Photograph Elicitation.

Fluctuations in positive and negative caregiving experiences remain only partially explained as the significant variability over time of potential predictive factors themselves is understudied. The current study aims to gain considerable insight into caregiving experiences and perceptions over time by using photovoice methodology to support semi-structured interviews. A case study, longitudinal design is taken with three female caregivers who provide detailed insight into their caregivers' experiences over a 12 month period. The interview transcripts were analyzed using IPA- Interpretative Phenomenological Analysis. This innovative combination of methods resulted in the emergence of three related themes which included consuming the role, feeling consumed by the role, and letting go of the role. The idiographic approach taken allowed both within case differences to be examined over time, and also between carer differences to be highlighted. Implications of illness type and its characteristics, and of attachment and relationship quality with the care recipient were seen in terms of how and when the caregivers moved between the themes identified. The use of others' support or respite care is examined vis-a vis caregiver's own beliefs, emotions, relationship attachment and motivations to care. Caregivers self-efficacy beliefs also shifted over time and were influential in caregiver experience as the care recipient condition or needs changed. No previous studies have found that negative caregiving consequences are, in part, under volitional control and yet our data on the underlying reasons for consuming caregiving or allowing themselves to consume, would suggest this may in part be true. This is important because it suggests that interventions to support caregivers should address relational and motivational factors more fully.

Protocol for a definitive randomised controlled trial and economic evaluation of a community-based rehabilitation programme following hip fracture: fracture in the elderly multidisciplinary rehabilitation-phase III (FEMuR III).

INTRODUCTION: Proximal femoral (hip) fracture is common, serious and costly. Rehabilitation may improve functional recovery but evidence of effectiveness and cost-effectiveness are lacking. An enhanced rehabilitation intervention was previously developed and a feasibility study tested the methods used for this randomised controlled trial (RCT). The objectives are to compare the effectiveness and cost-effectiveness of the enhanced rehabilitation programme following surgical repair of proximal femoral fracture in older people compared with usual care. METHODS AND ANALYSIS: Protocol for phase III, parallel-group, two-armed, superiority, pragmatic RCT with 1:1 allocation ratio; allocation sequence by minimisation programme with a built-in random element; secure web-based allocation concealment. The two treatments will be usual care (control) and usual care plus an enhanced rehabilitation programme (intervention). The enhanced rehabilitation will consist of a patient-held information workbook, goal setting diary and up to six additional therapy sessions. Outcome assessment and statistical analysis will be performed blind; patient and carer participants will be unblinded. Outcomes will be measured at baseline, 17 and 52 weeks' follow-up. Primary outcome at 52 weeks will be the Nottingham Extended Activities of Daily Living scale. Secondary outcomes will measure anxiety and depression, health utility, cognitive status, hip pain intensity, falls self-efficacy, fear of falling, grip strength and physical function. Carer strain, anxiety and depression will be measured in carers. All safety events will be recorded, and serious adverse events will be assessed to determine whether they are related to the intervention and expected. Concurrent economic evaluation will be a cost-utility analysis from a health service and personal social care perspective. An embedded process evaluation will determine the mechanisms and processes that explain the implementation and impacts of the enhanced rehabilitation programme. ETHICS AND DISSEMINATION: National Health Service research ethics approval reference 18/NE/0300. Results will be disseminated by peer-reviewed publication. TRIAL REGISTRATION NUMBER: ISRCTN28376407; Pre-results registered on 23 November 2018.

An oral history of health psychology in the UK.

Purpose An oral history of the development of health psychology in the United Kingdom. Methods Standard oral history methods produced interviews with 53 UK health psychologists, averaging 92 min in length. All interviewees entered the field from the 1970s to the 2000s, representing all four countries in the United Kingdom. A reconstructive mode of analysis, along with the few existing sources, was used to create a narrative of the history of health psychology in the United Kingdom. Audio recordings and transcripts will be archived for use by future researchers. Findings In the 1970s, medical schools in London recruited psychologists to teach, while also conducting pragmatic research on issues in healthcare. At the same time, some clinical psychologists began to work with physical health conditions in general hospitals. Partly influenced by developments in the United States and Europe, an identity of 'health psychology' developed and spread to researchers and practitioners doing work in psychology and health. In the 1980s, the field continued to attract researchers, including social psychologists working with health behaviours and outcomes, and clinical psychologists working in health care settings. During this time, it became formalized as a scientific field with the creation of the BPS Health Psychology Section, courses, and journals. In the 1990s, the field moved towards professional practice, which was controversial with other BPS divisions. However, it continued to grow and develop through the 2000s and 2010s. Conclusion Reflections on the development of UK health psychology represent the first historical narrative produced from oral testimony of those who were present at the time. Statement of Contribution What is already known on this subject? Health psychology emerged in the 1970s, initially in the United States following an APA Task Force report. It developed from a range of precursor movements including psychosomatic medicine, while in the United Kingdom medical psychology was an additional precursor. The development of health psychology has been discussed for a range of countries including the United States and others, but historical scholarship relating to the United Kingdom has been limited. What does this study add? From an oral history project, a narrative of UK health psychology's development is built up. Influences included opportunities at medical schools from the 1970s onward. Growing interest in health behaviours as a test of social psychology theory was important. The experiences of clinical psychologists working in health care settings are demonstrated. Multidisciplinary influences on the emergence and shaping of health psychology are evident.

'Function First-Be Active, Stay Independent'-promoting physical activity and physical function in people with long-term conditions by primary care: a protocol for a realist synthesis with embedded co-production and co-design.

INTRODUCTION: People with long-term conditions typically have reduced physical functioning, are less physically active and therefore become less able to live independently and do the things they enjoy. However, assessment and promotion of physical function and physical activity is not part of routine management in primary care. This project aims to develop evidence-based recommendations about how primary care can best help people to become more physically active in order to maintain and improve their physical function, thus promoting independence. METHODS AND ANALYSIS: This study takes a realist synthesis approach, following RAMESES guidance, with embedded co-production and co-design. Stage 1 will develop initial programme theories about physical activity and physical function for people with long-term conditions, based on a review of the scientific and grey literature, and two multisector stakeholder workshops using LEGO® SERIOUS PLAY®. Stage 2 will involve focused literature searching, data extraction and synthesis to provide evidence to support or refute the initial programme theories. Searches for evidence will focus on physical activity interventions involving the assessment of physical function which are relevant to primary care. We will describe 'what works', 'for whom' and 'in what circumstances' and develop conjectured programme theories using context, mechanism and outcome configurations. Stage 3 will test and refine these theories through individual stakeholder interviews. The resulting theory-driven recommendations will feed into Stage 4 which will involve three sequential co-design stakeholder workshops in which practical ideas for service innovation in primary care will be developed. ETHICS AND DISSEMINATION: Healthcare and Medical Sciences Academic Ethics Committee (Reference 2018-16308) and NHS Wales Research Ethics Committee 5 approval (References 256 729 and 262726) have been obtained. A knowledge mobilisation event will address issues relevant to wider implementation of the intervention and study findings. Findings will be disseminated through peer-reviewed journal publications, conference presentations and formal and informal reports. PROSPERO REGISTRATION NUMBER: CRD42018103027.

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.