From patients to teachers: the perspectives of trainers with aphasia in a UK Conversation Partner Scheme

Background: The importance of addressing the long-term needs of stroke survivors is emphasised in recent strategy and guideline documents, with community re-engagement and participation seen as particularly important. In recent years there has been a growing interest in stroke survivors with aphasia becoming involved as trainers in Conversation Partner Schemes (CPSs). There is little research into the experiences of people with aphasia being involved in or developing this “expert” role.

Aims: This study explored the experiences of aphasia trainers in a UK CPS in order to develop an understanding of how “aphasia expertise” was understood and whether participation addressed long-term issues implicit in living with aphasia.

Methods & Procedure: A qualitative approach was adopted involving semi-structured interviews with eight Conversation Partner Trainers, four males and four females, with a range of mild to severe aphasia. All except one trainer was of working age when they had their stroke. Interviews were transcribed and subject to thematic analysis.

Outcomes & Results: Three themes were produced through thematic analysis: Informal communication practice, Social re-engagement, and Interpersonal connections. Participants spoke about being motivated to improve their own and others’ communication skills, gaining a sense of purpose, achievement, and self-worth through their participation as a trainer. Deploying their expertise was seen as a way of “giving back”, addressing the effects of social isolation, and reconnecting to their previous self.

Conclusions: Becoming involved as a trainer in a CPS gave these participants an opportunity to feel they had a meaningful purpose. This has wider implications for trainers’ currently living with aphasia in regard to their sense of reclaiming, maintaining, and constructing their identity, and for future services for people with aphasia.