Living with severe aphasia: Tracking social exclusion

Abstract

Background: Little is known about what happens to people with severe aphasia in the years after stroke when rehabilitation comes to an end, or about day‐to‐day life for this group.

Aims: This study aimed to track the day‐to‐day life and experiences of people with severe aphasia, and to document levels of social inclusion and exclusion as they occurred in mundane settings.

Methods and Procedures: Ethnography was chosen as the qualitative methodology most suitable for studying the experience of people with profoundly compromised language. 20 people who were judged to have severe aphasia following stroke agreed to be visited and observed three times in different domestic and care settings. The observer documented environments, protagonists, events, and interactions. Field notes were elaborated with personal, methodological, and interpretative notes. Written material (for example information leaflets) was also documented and described. Data were subject to thematic analysis.

Outcomes and Results: The study revealed how social exclusion is a common experience for this group, played out in a variety of ways in a range of domestic and care settings. Social exclusion occurs at infrastructural, interpersonal, and personal levels.

Conclusions: The study suggests that the social exclusion of people who struggle to communicate could be addressed through training, for professional and lay carers, that promotes support for communication; opportunity and access; respect and acknowledgment; and attention to the environment.

Acknowledgments

This study would not have been possible without the support and backing of a number of people. First, thanks are due to the people with severe aphasia and their families who allowed the research to take place. We are most grateful to the therapists and voluntary sector workers who suggested participants and made initial contact on our behalf. Thanks go to all the staff working in the day centres, nursing homes, and respite centres for their cooperation and support for the study. The project was enriched by the guidance and contribution of members of the advisory group and the co‐researchers, Sally Byng of Connect and Colin Barnes and Geoff Mercer of the University of Leeds. We are indebted to The Joseph Rowntree Foundation for supporting this study, and particularly to Alex O'Neil for his patient and constructive input at every stage of the project. Finally, the author would like to thank Carole Pound, Alan Hewitt, and Judy Duchan for their contribution to the preparation of this paper.