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Consumer Engagement in Developing a Post-stroke Activities programme

People who have had a stroke often fail to resume their full lives and maintain their lifestyle needs even if they have had a good recovery. Traditional forms of rehabilitation have concentrated on physical independence rather than social and leisure pursuits. This study hopes to identify issues around the provision of social and leisure activities in view of recent legislation (National Service Framework for Older People, DoH, 2001) which encourages the redesign of stroke services to address the individual’s needs. It also specifies that people affected by stroke should be meaningfully involved in service design.

Project Leads

Professor Caroline Watkins

Project Staff

Dr Catherine Jack (The Royal Liverpool and Broadgreen University Hospitals NHS Trust)
John Winter (Merseyside Stroke Network)
Colin Trewavas (Liverpool City Council)
Joyce Riley (The Royal Liverpool and Broadgreen University Hospitals NHS Trust)
Therapist to be identified for secondment opportunity.
Researchers from Clinical Practice Research Unit -University of Central Lancashire.
Volunteers from Merseyside Stroke Network.

Research questions

For people who have had an acute stroke:
What social and leisure activities are currently available
Which activities are required to meet needs (in hospital and at home)
How can a needs-led programme be actioned
What is the programme’s effectiveness in meeting need

Research objective(s)

To obtain the views of people who have been hospitalised after an acute stroke on: Current activities available to them; how provision could be improved; how these suggested activities could best be provided. To obtain the views of healthcare and social care staff on how suggested activities from the consumers could be developed into available activities. Implementation of Basic Social and Leisure Activities programme (Phase 1) and an action plan for a complex Comprehensive Social and Leisure Activities Programme (Phase 2) requiring further research and grant applications.

Method

Research design
Structured questionnaires
Semi-Structured Interviews by stroke survivors, carers and consumer representatives who have been trained in interview methods.

Work Groups
Subjects and Sampling
Consecutive patients who have been admitted to rehabilitation following an acute stroke will be invited to take part in the study. Ten patients and their carers (up to 10), following informed consent, will then be interviewed.

Settings

Stroke Rehabilitation Unit at Royal Liverpool and Broadgreen University Hospital NHS Trust and homes of participants.

Plan of Investigation

Patients and their carers will be visited in hospital, within a week of transfer into the rehabilitation ward, subsequently when discharge date is set and at 1 and 6 weeks post-discharge. All interviews will be taped and subsequently be analysed, using a constant comparative method to identify the breadth of themes expressed relating to the topic. Issues raised from the interviews will be discussed between patients, carers and staff representatives to disseminate information on activities and issues of importance to patients and carers. The aim will be to develop activities that: a) could be implemented with minimal funding and b) that would require additional funding (Comprehensive Social and Leisure Activities Programme). Work groups representing staff, patients and carers will be created to discuss the activities. Once all work groups are completed, all information will be collated to provide a comprehensive overview for Phase 1 and requirements for Phase 2. Discussion will follow and results will be available to providers to implement the components within their remit. Implementation will be evaluated and results disseminated locally and nationally.