Needs, barriers and facilitators experienced by spouses of people with aphasia

Abstract

Purpose. Little is known about how spouses cope with their needs as a result of their partner's aphasia. This study described spouses' needs and identified the barriers and facilitators to satisfying them.

Methods. Four associations of people with aphasia were approached. Eleven spouses were interviewed in small groups. They described the results of their inquiries and efforts to satisfy their needs because their partner had aphasia (mean time since onset 6 years 8 months) as a result of stroke or surgery. Discussions were transcribed and coded. Excerpts were grouped into categories.

Results. Spouses mainly needed support and respite, and perceived their partner to need help for communication and well-being. Personal factors like the availability of close others to provide help were facilitating. However, participants encountered barriers, mainly organisational, i.e. the help needed did not exist. Some needs persisted over time.

Conclusions. Results confirm the long-term needs of spouses in adjusting to the aphasia of their partner, as well as the limited services available to them. Many of the needs reflected spouses' concerns about their partner, while others were a consequence of their caregiving role as well as the unavailability of support. Spouses of people with aphasia should have access to support during and after rehabilitation.

Keywords:

• Rehabilitation
• aphasia
• spouses
• brain injury
• barriers and facilitators
• adaptation

Acknowledgements

This study was supported by a research grant from the Canadian Institutes of Health Research (NRF 57710) and research funds available to the first author at the Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal. The participation of the following associations for people with aphasia is gratefully acknowledged: l'Association québécoise des personnes aphasiques, l'Association des personnes aphasiques de Laval, le Groupe Relève pour personnes aphasiques et le Groupe d'entraide pour personnes aphasiques. We appreciated the participation of the people who were interviewed. We also thank our undergraduate students: Marie Eve Lacroix, Isabelle Robillard, and Émilie Faubert. We express our thanks to Mylène Fournier, Marie-Odile Marcoux-Fortier, Mélissa Sauvé, Emilie Salois-Bellerose and all members of our research team, ESPACE, including our kind colleague, Louise Getty.