Stroke survivors and their carers will be interviewed about the barriers and enablers that affect their unmet needs and participation, as part of a drive to build a longer-term care strategy for the period after the first few months post-stroke. Current stroke care focuses heavily on the first weeks after the event, leaving survivors and their families with a range of unmet needs that drive unplanned GP visits and hospital readmissions, creating stress and economic burden for the NHS. This project aims to define and test a robust, generalisable care strategy for the period nine months post-stroke and beyond. If successful, the research will produce a structured assessment of unmet needs, a supported self-management programme, and a staff training package. A feasibility cluster trial in ten services will test procedures—including economic evaluation—for a future large-scale trial. The outcome could be a standardised, evidence-based model of longer-term stroke care that reduces unplanned healthcare use and improves quality of life for survivors and their carers across the UK.
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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 abo
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