Living with severe aphasia: Tracking social exclusion

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.