Social participation post stroke: a meta-ethnographic review of the experiences and views of community-dwelling stroke survivors

Abstract

Purpose: There is currently no consensus on a definition of participation that describes experiences and challenges of people with stroke. This meta-synthesis aimed to identify, appraise and synthesise qualitative research on stroke survivors’ views of their experiences of social participation. Methods: Ten electronic databases were searched for relevant qualitative studies in English from January 2001 and ending September 2011. Searching was extended to grey literature, hand searching journals, checking references and contacting authors of included studies. Two independent reviewers extracted data and assessed methodological study quality. A meta-ethnographic approach described by Noblit and Hare was used to synthesise findings. Results: Eleven articles met the inclusion criteria. Five main themes were identified: (1) change and disruption; (2) perceived magnitude of individual barriers; (3) pursuing personal choices; (4) building individual confidence and (5) evaluating personal meaning. Conclusion: The ability of the person to accept their stroke-related problems and adapt their behaviour and attitude by using active decision-making and self-management skills are central factors to social participation post stroke. This synthesis contributes an important addition to the conceptual understanding of social participation relevant to people with stroke within the UK.

Implications for Rehabilitation

• Social participation post stroke appears to be a dynamic, complex and continuous individual process, and a personalised longer term approach to rehabilitation would be beneficial.

• Rehabilitation should be focussed on what is most meaningful to the person following their stroke. Professionals can do this by using questions which explore what stroke survivors want to do; what they perceive to be the significant barriers, and what skills and supportive networks are needed.

• Our findings emphasise the importance of rehabilitation practitioners supporting stroke survivors’ to engage with meaningful self-selected social activities and the importance of stroke survivors having the freedom and autonomy to set their own goals within rehabilitation.

• The person’s ability to adapt their behaviour and attitude by being positive, hopeful, determined, resilient and courageous is an essential part of pursuing their self-selected valued activities. Acknowledging and encouraging the importance of these behaviours and attitudes should be promoted in rehabilitation.

• Community life
• employment
• interpersonal relationships
• meta-ethnography
• participation
• social life
• stroke

Acknowledgements

We thank Professor Ann Mackenzie for reading and commenting on this paper. We are grateful to the stroke survivors in the advisory panel for reflecting on the reviews findings. We also acknowledge the work of the authors of the studies included in this review and are grateful to the authors who responded to our requests for information.