What really matters to people with aphasia when it comes to group work? A qualitative investigation of factors impacting participation and integration.

Abstract

Participation in a group environment is an inherently complex undertaking for people with aphasia. It involves engaging in multi-person interactions with other people who may have a range of communication strengths and strategies at their disposal. The potential challenges of community aphasia-group participation and practice has had limited attention in the research literature. Evidence from group users have primarily been drawn from the perspective of long-term members or those participating in highly specific and time-bound groups. There is a need to explore the experiences of a broader sample, including people who have left groups, to improve our understanding of structures, processes as well as leadership behaviours that may facilitate positive group participation experiences. To examine the potential factors operating within the group environment that contribute to positive and negative participation experiences. Twenty-two people with aphasia participated in semi-structured interviews about their experiences of community aphasia groups. People who maintained long-term membership as well as those who had left groups were sampled. An interpretative phenomenological framework was employed to examine the data collected. Seven factors emerged as central to participation experiences and contributed to the ability of people with aphasia to integrate and engage in the group space. These factors included: (1) balanced interactional patterns; (2) an open and non-hierarchical group environment; (3) communication awareness and education amongst members; (4) meaningful activity; (5) ritual and structure; (6) composition and group size; and (7) group leadership. People with aphasia perceive community aphasia-group participation to be beneficial to their ability to live well with aphasia. However, a range of challenges to successful participation are also evident. Inputs such as peer-to-peer communication strategies, shared roles and responsibilities, and consultation with regard to group objectives and processes provide group members with the opportunity to become active contributors, demonstrate competence and have influence over the group. When inputs are poorly implemented or absent, people with aphasia are at risk of feeling disabled and marginalized by the group experience.