What makes a successful peer-led aphasia support group?

Abstract

Background: People with aphasia frequently report reduced social networks as well as a desire for increased social interaction. Individuals with aphasia and speech-language pathologists have identified peer support as an important component of adjusting to post-stroke changes and learning to live successfully with aphasia. Peer-led aphasia support groups can provide greater, long-term access to peer support and social communication opportunities for people with aphasia and their families. However, more research is needed to facilitate their development and sustainability in local communities.

Aims: The primary aim of this study was to identify the core components of a successful peer-led aphasia support group from the perspective of people with aphasia and their family members. A second aim of the study was to explore the information and support needs of peer leaders in starting and running a group.

Methods & Procedures: The qualitative research approach of focused ethnography was used to understand and interpret the functioning of peer-led aphasia support groups in the community. Twenty-six people, who were attending a peer-led aphasia support group, participated in the study. Participants comprised 19 people with aphasia (mean age 64.8 ± 12.9) and seven family members (mean age 58.3 ± 9.0), including three peer leaders. Data were collected from the following sources: participant observation; focus group discussion; individual interview; and written artefacts. Thematic analysis of the focus group and interview transcripts was conducted, while field notes and written artefacts were used in triangulation of the identified themes.

Outcomes & Results: The findings indicate that a number of themes are important for the successful functioning of a peer-led aphasia support group, including friendship, informality, a supportive communication environment, providing support and practical considerations for the timing and location of meetings. Factors that facilitated peer leaders to start and run groups included informational support, practical support, attracting new members, time and organisation, and particular personal qualities.

Conclusions: The findings confirm the positive and empowering nature of peer-led aphasia support groups that provide opportunities for developing genuine friendships and authentic communicative interactions in a supportive environment. Results of the study provide useful guidelines to assist people with aphasia in developing and sustaining peer-led aphasia support groups in the community.

Keywords:

• Aphasia
• Peer support
• Peer-led
• Groups
• Qualitative
• Focused ethnography.

Notes

The authors would like to acknowledge the support of the National Stroke Foundation for an Honours Grant provided to assist in this research. The authors would also like to thank the people with aphasia and their family members who generously participated in the study.