Experiences of people with severe aphasia and spouses attending an Interdisciplinary Community Aphasia Group

Abstract

Background: Community aphasia groups are recognized as an area of need and value for people with chronic aphasia and their significant others. However, our understanding of attendees’ experiences is limited by the small amount of qualitative research available. The present study aimed to describe participant experiences of an Interdisciplinary Community Aphasia Group, as part of a better understanding of its underlying processes and value.

Methods: Four people with chronic, severe aphasia and their spouses attended an Interdisciplinary Community Aphasia Group held at a university speech clinic for 2 h once weekly over 12 weeks. The group was co-facilitated by a speech-language pathologist and a social worker, with the support of two aides (one a person with aphasia, and the other a member of the general community). The group addressed the following areas: communication therapy, conversation, participation in meaningful and accessible activities, psychological and social support, and aphasia information and education. Following the program, the people with aphasia (via multimodal communication) and spouses participated in separate semi-structured interviews with an independent interviewer. The interviews addressed members’ perceptions of the program (both in relation to themselves and their spouse) along with recommendations for improvement. The interviews were analyzed using Framework Analysis.

Results: Members shared preferences for program activities and group format, with some experiences leading to suggestions for improvement. The group dynamics and environment were considered positive overall, and members highlighted a range of positive impacts for both themselves and their spouse. Together, these elements informed members’ evaluation that the model contained something for everyone, but may not be a “one-stop shop” given ongoing needs for therapy. An overarching theme for spouses addresses therapy and recovery in relation to the impact of peers, views and beliefs, and adjustment.

Conclusions: The Interdisciplinary Community Aphasia Group model has overall acceptability for people with chronic, severe aphasia and their spouses, and can be adapted to ensure feasibility in clinical practice. Ongoing research is required to best tailor community groups for people with aphasia and significant others, and to reinforce the need for their proliferation.

Implications for rehabilitation

• People with aphasia and their spouses can benefit from a wide range of programming, including participation in meaningful and accessible non-verbal activitiesAn interdisciplinary staff team can contribute positively to member experience and impacts, with peer staff offering valuable mentoring roles. Various aspects of member identity and life narrative impact on community aphasia group participation; understanding members’ needs in the context of previous experiences can improve tailoring of program content.

Keywords:

• Aphasia
• group
• family
• community
• qualitative

Acknowledgements

The authors would like to thank the clinicians involved in recruitment and the participants for their commitment to the project.

Disclosure statement

The authors have no conflicts of interest to disclose. No companies, pharmaceutical or otherwise, were involved in the study.

Additional information

Funding

This work was supported by the Australian Research Council Future Fellowship (#1010061; fourth author)