“It’s improved the whole lifestyle”: Exploring the family perspective of participation in a Gavel Club for people with aphasia

Abstract

Purpose: Aphasia impacts not just the individual with aphasia, but also their family members and friends. Known as third-party disability, it is largely hidden but can be as pervasive as aphasia itself. Gavel Clubs are a Toastmasters International-affiliated group where members participate in public-speaking tasks. Participation has been associated with improvements in quality-of-life and communication confidence but the extent to which it can impact family members of people with aphasia is not yet known. This study explored family member perspectives of participation in a Gavel Club for people with aphasia, to reveal any benefits or challenges perceived by family members and/or close friends. Methods: Semi-structured interviews were undertaken with 13 family members or close friends of people with aphasia who regularly participated in a weekly Gavel Club. The interviews were analysed using thematic analysis. Results: Three themes were identified: (1) Something to do, (2) Sense of community and (3) I can see great improvements, along with two subthemes (i) This is not just us and (ii) Support of knowing other people go through it. The themes reflected a largely positive experience of Gavel Club participation as perceived by family members. The theme names were derived from quotes from the participants. Conclusions: Regular participation in a Gavel Club for people with aphasia has a positive impact beyond just the person with aphasia, extending to their family members and close friends. This impact can be direct, if the family members themselves participate, or indirect, through the perceived benefits for the person with aphasia.