Exploring stroke survivors' and physiotherapists' views of self-management after stroke : a qualitative study in the UK

Objectives Stroke is a sudden-onset condition with long-term consequences. Self-management could help address long-term consequences of stroke. Stroke survivors' and health professionals' views of self-management may vary, limiting the successful introduction of self-management strategies. This paper explores stroke survivors' and physiotherapists' views of self-management, focusing on what self-management means, and factors perceived to enable and hinder self-management after stroke, to draw out implications for policy, practice and future research.Design Qualitative study using semistructured interviews and a thematic analysis approach.Setting Stroke unit and community stroke-rehabilitation services in London, UK.Participants 13 stroke survivors (8 men and 5 women; aged 53–89 years) admitted to a London stroke unit. 13 physiotherapists: 8 working in an inpatient stroke unit and 5 in community rehabilitation.Results Key differences were evident in how self-management was understood between these groups. Stroke survivors were unfamiliar with the term self-management, but most could provide their own definition and relate to the term, and understood it as care of the self: ‘doing things for yourself’ and ‘looking after yourself’. They did not recognise self-management as part of their care, but valued therapists as encouraging experts in supporting their recovery after stroke. Physiotherapists commonly understood self-management as a process in which stroke survivors were expected to take an active role in their rehabilitation and manage their recovery and health, with different understandings of self-management among physiotherapists shaped by the context in which they worked. They reported that individual, social and organisational factors enable and hinder self-management after stroke, with individual and organisational barriers particularly evident in the early stages.Conclusions If self-management support approaches are to be used, further work is required to explore the language and strategies used by professionals to support self-management, and the barriers to supporting self-management at different time points after stroke

What underlies the difference between self-reported health and disability after stroke? A qualitative study in the UK.

BACKGROUND: Levels of self-reported health do not always correlate with levels of physical disability in stroke survivors. We aimed to explore what underlies the difference between subjective self-reported health and objectively measured disability among stroke survivors. METHODS: Face to face semi-structured interviews were conducted with stroke survivors recruited from a stroke clinic or rehabilitation ward in the UK. Fifteen stroke survivors purposively sampled from the clinic who had discordant self-rated health and levels of disability i.e. reported health as 'excellent' or 'good' despite significant physical disability (eight), or as 'fair' or 'poor' despite minimal disability (seven) were compared to each other, and to a control group of 13 stroke survivors with concordant self-rated health and disability levels. Interviews were conducted 4 to 6 months after stroke and data analysed using the constant comparative method informed by Albrecht and Devlieger's concept of 'disability paradox'. RESULTS: Individuals with 'excellent' or 'good' self-rated health reported a sense of self-reliance and control over their bodies, focussed on their physical rehabilitation and lifestyle changes and reported few bodily and post-stroke symptoms regardless of level of disability. They also frequently described a positive affect and optimism towards recovery. Some, especially those with 'good' self-rated health and significant disability also found meaning from their stroke, reporting a spiritual outlook including practicing daily gratitude and acceptance of limitations. Individuals with minimal disability reporting 'fair' or 'poor' self-rated health on the other hand frequently referred to their post-stroke physical symptoms and comorbidities and indicated anxiety about future recovery. These differences in psychological outlook clustered with differences in perception of relational and social context including support offered by family and healthcare professionals. CONCLUSIONS: The disability paradox may be illuminated by patterns of individual attributes and relational dynamics observed among stroke survivors. Harnessing these wider understandings can inform new models of post-stroke care for evaluation

Shaping innovations in long-term care for stroke survivors with multimorbidity through stakeholder engagement

BACKGROUND:Stroke, like many long-term conditions, tends to be managed in isolation of its associated risk factors and multimorbidity. With increasing access to clinical and research data there is the potential to combine data from a variety of sources to inform interventions to improve healthcare. A 'Learning Health System' (LHS) is an innovative model of care which transforms integrated data into knowledge to improve healthcare. The objective of this study is to develop a process of engaging stakeholders in the use of clinical and research data to co-produce potential solutions, informed by a LHS, to improve long-term care for stroke survivors with multimorbidity. METHODS:We used a stakeholder engagement study design informed by co-production principles to engage stakeholders, including service users, carers, general practitioners and other health and social care professionals, service managers, commissioners of services, policy makers, third sector representatives and researchers. Over a 10 month period we used a range of methods including stakeholder group meetings, focus groups, nominal group techniques (priority setting and consensus building) and interviews. Qualitative data were recorded, transcribed and analysed thematically. RESULTS:37 participants took part in the study. The concept of how data might drive intervention development was difficult to convey and understand. The engagement process led to four priority areas for needs for data and information being identified by stakeholders: 1) improving continuity of care; 2) improving management of mental health consequences; 3) better access to health and social care; and 4) targeting multiple risk factors. These priorities informed preliminary design interventions. The final choice of intervention was agreed by consensus, informed by consideration of the gap in evidence and local service provision, and availability of robust data. This shaped a co-produced decision support tool to improve secondary prevention after stroke for further development. CONCLUSIONS:Stakeholder engagement to identify data-driven solutions is feasible but requires resources. While a number of potential interventions were identified, the final choice rested not just on stakeholder priorities but also on data availability. Further work is required to evaluate the impact and implementation of data-driven interventions for long-term stroke survivors

Comparative case studies in integrated care implementation from across the globe : a quest for action

The case studies represent integrated care implementation efforts from five countries and continents (United States, United Kingdom, Vietnam, Israel, and Nigeria), targeting a range of clinical populations and care settings. The study addresses two research objectives: 1) To highlight current integrated care implementation efforts that target a range of healthcare systems, patient populations and implementation strategies and outcomes, and 2) To synthesize the shared and unique challenges and successes across studies using the Exploration, Preparation, Implementation, Sustainment (EPIS) framework. Funding is a vital condition for successful transformation of healthcare delivery.National Institute of Mental HealthAgency for Healthcare Research and Qualit

Barriers and facilitators of mental health programmes in primary care in low-income and middle-income countries.

Integration of services into primary health care for people with common mental disorders is considered a key strategy to improve access to mental health care in low-income and middle-income countries, yet services at the primary care level are largely unavailable. We did a systematic review to understand the barriers and facilitators in the implementation of mental health programmes. We searched five databases and included studies published between Jan 1, 1990, and Sept 1, 2017, that used qualitative methods to assess the implementation of programmes for adults with common mental disorders at primary health-care settings in low-income and middle-income countries. The Critical Appraisal Skills Programme Qualitative Checklist was used to assess the quality of eligible papers. We used the so-called best fit framework approach to synthesise findings according to the Consolidated Framework for Implementation Research. We identified 24 papers for inclusion. These papers described the implementation of nine programmes in 11 countries. Key factors included: the extent to which an organisation is ready for implementation; the attributes, knowledge, and beliefs of providers; complex service user needs; adaptability and perceived advantage of interventions; and the processes of planning and evaluating the implementation. Evidence on implementation of mental health programmes in low-income and middle-income countries is scarce. Synthesising results according to the Consolidated Framework for Implementation Research helped to identify key areas for future action, including investment in primary health-care strengthening, capacity building for health providers, and increased support to address the social needs of service users

Social prescribing programmes to prevent or delay frailty in community-dwelling older adults

The increasing incidence of frailty is a health and social care challenge. Social prescription is advocated as an important approach to allow health professionals to link patients with sources of support in the community. This study aimed to determine the current evidence on the effectiveness of social prescribing programmes to delay or reduce frailty in frail older adults living in the community. A systematic literature review of published (DARE, Cochrane Database of Systematic Reviews, MEDLINE, EMBASE, CINAHL, NICE and SCIE, NHS Economic Evaluation Database) and unpublished databases (OpenGrey; WHO Clinical Trial Registry; ClinicalTrials.gov) were searched to July 2019. Studies were eligible if they reported health, social or economic outcomes on social prescribing, community referral, referral schemes, wellbeing programmes or interventions when a non-health link worker was the intervention provider to people who are frail living in the community. 1079 unique studies were screened for eligibility. No papers were eligible. There is therefore a paucity of evidence reporting the effectiveness of social prescribing programmes for frail older adults living in the community. Given that frailty is a clinical priority and social prescribing is considered a key future direction in the provision of community care, this is a major limitation

A feasibility hybrid II randomised controlled trial of volunteer ‘Health Champions’ supporting people with serious mental illness manage their physical health: study protocol

Background People with serious mental illnesses (SMI) such as schizophrenia often also have physical health illnesses and interventions are needed to address the resultant multimorbidity and reduced life expectancy. Research has shown that volunteers can support people with SMI. This protocol describes a feasibility randomised controlled trial (RCT) of a novel intervention involving volunteer ‘Health Champions’ supporting people with SMI to manage and improve their physical health. Methods This is a feasibility hybrid II randomised effectiveness-implementation controlled trial. The intervention involves training volunteers to be ‘Health Champions’ to support individual people with SMI using mental health services. This face-to-face or remote support will take place weekly and last for up to 9 months following initial introduction. This study will recruit 120 participants to compare Health Champions to treatment as usual for people with SMI using secondary community mental health services in South London, UK. We will measure the clinical and cost effectiveness including quality of life. We will measure the implementation outcomes of acceptability, feasibility, appropriateness, fidelity, barriers and enablers, unintended consequences, adoption and sustainability. Discussion There is a need for interventions to support people with SMI with their physical health. If this feasibility trial is successful, a definitive trial will follow to fully evaluate the clinical, cost and implementation effectiveness of Health Champions supporting people with SMI