Title: Development and evaluation of strategies to provide longer-term health and social care for stroke survivors and their carers
Funder: Department of Health and Social Care

Abstract: AIMS AND OBJECTIVES We seek to develop and test a longer-term integrated stroke care strategy focused on improving the quality of life of stroke survivors and their carers by addressing unmet needs, and maintenance and enhancement of participation. BACKGROUND AND RATIONALE Research into, and the care of, patients after stroke has been transformed in recent years. However the primary focus of this activity has been in the first few weeks and months after stroke. Despite policy recommendations a longer-term care strategy for stroke remains undefined. As a consequence, recent surveys have indicated the range of unmet needs of this patient group. Unplanned GP visits and hospital re-admissions generate economic burden to the NHS and cause stress and discomfort to the stroke survivors and their families. The time frame for long-term is not defined, we anticipate that this will be nine-months post stroke and beyond, but this will be clarified in the research plan. We propose to develop a robust and generalizable longer-term stroke care-strategy. RESEARCH ENVIRONMENT We feel that we have created the optimum environment to develop and implement the proposed research. We have created a strong team which includes experienced researchers, stroke survivors, health and social care professionals from across the UK. In addition the work is supported by the National Stroke Improvement Programme and The Stroke Association. RESEARCH PLAN We will use techniques of intervention mapping to develop an evidence and theory based care strategy. We are proposing that the care strategy will be predicated on a structured assessment of unmet needs conducted as part of the recommended review process. The assessment will prompt a range of appropriate service responses, which will include a theoretically driven programme of supported self-management, addressing behaviours directly related to key areas of unmet need and participation that will be developed as part of this research. Workstream 1. We will undertake qualitative interviews with stroke survivors and their carers to explore the barriers and enablers to the behaviours which impact on unmet needs and restrict participation post-stroke, and gain further insight into specific needs (for example, type of information). Workstream 1b. Review of the evidence relating to interventions which may enhance quality of life and participation. Identification of effective methods of delivering components of the care strategy, specifically supported self-management and methods of engaging with participants with communication and cognitive problems. Workstream 2: National survey to clarify means of identifying stroke survivors and time points of service engagement. Focus groups and interviews will be undertaken with staff in four services to gain further information on support available for stroke survivors, and the barriers and enablers for delivering a longer-term stroke strategy. Workstream 3: Techniques of intervention mapping will be used to create a theory based programme of supported self-management based on targeted behaviours. Similar techniques will be used to create a training programme for staff. Workstream 4: In order to ensure that the developed materials and proposed care strategy is feasible in stroke services and acceptable to stroke survivors we will work with three services to implement the strategy. A case study approach will be undertaken to capture learning from staff and participating stroke survivors, including acceptability of self-management materials and training programme. Workstream 5: A feasibility cluster trial will be undertaken in ten services in order to develop procedures, including economic evaluation for a large scale trial. Outcome assessment will include the WHOQOL-BREF quality of life measure and a stroke specific measure, the Stroke Impact Scale. PROJECTED OUTPUTS & DISSEMINATION PLANS The research will provide information about this neglected client group. This includes: identification of key behaviours which influence longer-term post-stoke outcomes; review of interventions; national survey of current configuration of stroke services, barriers and enablers for delivering those services. Development of a care strategy including methods of providing supported self-management and training materials. Refinement of procedures for a large scale trial. Our emerging findings will be disseminated nationally through the NHS Stroke Improvement Programme. RELEVANT EXPERTISE & EXPERIENCE OF THE RESEARCH TEAM The applicant team have worked together to successful deliver a current programme grant which included completion of a large cluster trial (n=800). Individually and collectively the team have undertaken considerable relevant research much of which have informed clinical guidelines. JUSTIFICATION OF COSTS The study has been planned and costed to maximise resource efficiency. We seek to appoint a Programme Manager to oversee implementation and two senior staff to oversee qualitative and quantitative components. We will convene a Programme Management Group and an implementation team for each workstream. The research programme developed from and is predicated on the views of stroke survivors who will be actively engaged in all stages of implementation through a co-applicant and regular consumer group meetings.

Lay abstract: Stroke remains a major illness with at least 900,000 people living in England who have had a stroke. The early stages of the stroke care pathway are becoming more prescribed (treatment in acute and rehabilitation stroke units), but despite policy recommendations, strategies for longer-term care are not developed and stroke survivors and their families face a number of problems and challenges. We seek to progress our current work (focused on the six months after stroke) to develop and evaluate key aspects of a replicable system of longer-term (nine months post-stroke) service delivery 'care strategy'. The emphasis will be on improving quality of life by addressing unmet needs and enhancing participation. We have undertaken a survey of unmet need after stroke. We will interview stroke survivors and their carers to discuss with them factors influencing unmet needs and things that have helped or hindered their daily lives. We will update our literature review to identify any effective interventions, and recommended or innovative ideas to support the implementation of the care strategy. We will undertake a national survey of stroke services to gain information on who might provide longer-term care and support. We will also discuss with health, social care and voluntary workers in detail in four areas in England the needs, opportunities and challenges of supporting stroke survivors and their carers. Using information we have obtained from the review of the literature, survey of services and based on the factors identified by stroke survivors and carers, we will use a technique called intervention mapping to develop ways to provide longer-term support based on evidence and theories of behaviour change. This will include a structured assessment of unmet needs which will link to a range of services and materials including a supported self-management programme. We will then work in three services in England to test implementation, refine the methods of delivery and materials in order to be able to implement them in usual practice. We then propose to undertake a cluster randomised feasibility trial in which some services will provide the new service and others will continue with usual care, to enable us to test out the methods and gain information on acceptability for a large multicentre cluster randomised trial. We will assess outcome of the proposed new service using quality of life measures and economic evaluation. The applicant team have worked successfully together over many years and undertaken previous work, which will support this programme of research. The proposed programme is supported by the Stroke Improvement Programme, The Stroke Association and Carers Resource. This research will address the gap in the stroke care pathway and provide a replicable, and evidenced and theory based system of longer-term stroke service delivery.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: STROKE