Exploring participant perspectives of community aphasia group participation: from “I know where I belong now” to “Some people didn’t really fit in”

ABSTRACT

Background: Community aphasia groups have consistently been highlighted as a viable and effective means of supporting people with chronic aphasia to live full lives. The multi-person nature of the group is viewed as providing a distinctive opportunity for dynamic interaction, relationship development and adaption to communication disability. A critical examination of participant perspectives, drawn from long-term group members and members who have left groups, can reveal both positive and negative participation experiences and serve to support enhanced service delivery.

Aims: The aim of this study was to explore both positive and negative experiences resulting from community aphasia group participation.

Methods & Procedures: 22 people with aphasia from across Australia participated in semi-structured interviews about their experiences of participating in community aphasia groups. Perspectives were drawn from a diverse group of individuals, including people who maintained long-term membership and people who had left groups, as well as people with mild, moderate and severe aphasia. An interpretative phenomenological framework was employed to examine data collected.

Outcomes & Results: Analysis of participant transcripts revealed themes related to the importance of belonging, the value of contributing and supporting others, experiencing affirming and regular social activity and developing new relationships. In addition to positive experiences, there was evidence in each of these themes of experiences of marginalisation, disablement, and exclusion.

Conclusions: For people with aphasia, community aphasia group participation is viewed through the prism of changes to the individual’s personal and social life. People with aphasia perceive community aphasia groups as providing opportunities for positive affirmation, personal value, and renewed sense of purpose. Conversely, the group environ can be associated with perceptions of negative evaluation, marginalisation, and disempowerment. These findings necessitate further critical examination of the potential factors contributing to participation experiences. A focus on factors both facilitating and impeding group participation will support improved and high-quality community aphasia group practice.

KEYWORDS:

• Rehabilitation
• aphasia
• support
• community group

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The first author was supported by the La Trobe University Post-Graduate Award. The third author was supported by the Australian Research Council Future Fellowship [FT100100446].