Combating social isolation for people with severe chronic aphasia through community aphasia groups: consumer views on getting it right and wrong

ABSTRACT

Background: Group participation has been demonstrated to have a range of benefits for people with chronic aphasia yet the strength of empirical findings is limited by the under-representation of people with severe aphasia. Little is known about what people with severe aphasia want, need and receive through participation in aphasia groups. Understanding the barriers and facilitators experienced by this population may assist the development of long-term strategies to manage significant communication disability.

Aims: This study explored community aphasia group participation from the perspectives of people with severe aphasia.

Method & Procedures: An interpretative phenomenological approach was employed to examine the reflections and experiences of seven people with severe, chronic aphasia. Reflections stemmed from people with aphasia who had withdrawn from groups as well as people who remained. Semi-structured interviews were conducted using techniques for enabling the participants to participate as fully as possible in the interviews. Field notes and journal entries also constituted data. Thematic analysis was used with all data sources.

Outcomes & Results: Analysis revealed three core themes associated with community aphasia group participation experiences. Participants with severe aphasia can initially perceive the community aphasia group to be high risk. As a consequence, the group participation proposition can be met with substantial apprehension. Compared to participants with mild and moderate aphasia, the participants with severe aphasia demonstrated a need for increased structure and use of physical materials to support them to successfully interact and integrate in the group. Despite the need for increased structure, participants with severe aphasia valued group environments that offered authentic interaction opportunities and that provided a platform for them to demonstrate and reveal their individual strengths, most notably as active listeners.

Conclusions: Participation in community aphasia groups presents additional challenges for people with severe aphasia. They risk becoming overwhelmed and excluded if the group is not adequately structured and resourced to support their interaction. People with severe aphasia value the explicit use of physical materials and group activities that support them to engage in group-based interactions. People with severe aphasia also seek to participate in authentic and meaningful activity that enables them to demonstrate identity and competency. In a community aphasia group that has a supportive communication environment, people with severe aphasia can experience fulfilling interactions and view themselves as valued group contributors.

KEYWORDS:

• Severe aphasia
• social isolation
• community group
• stroke
• participation

Acknowledgements

We thank all the participants and their families who so generously donated their time and energy to contribute their views to this study.

Declaration of interest

The authors report no declarations of interest

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

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