A description of the personal and environmental determinants of participation several years post-stroke according to the views of people who have aphasia

Abstract

Background: People with aphasia face situations of handicap in their daily life and activities for which they were not fully prepared in rehabilitation.

Aims: The present research aimed to explore the factors that facilitate or hinder participation according to people who live with aphasia.

Methods & Procedures: Seventeen persons with chronic aphasia were interviewed in semi-structured small discussion groups. The transcripts of the discussions were analysed qualitatively by breaking them up into excerpts and regrouping the excerpts with similar meaning.

Outcomes & Results: Participants mentioned more factors facilitating than hindering participation. Facilitating factors included: helpful family members, aphasia community organisations and their own positive personal characteristics, such as determination. Barriers to participation were, for example, poorly adjusted speakers and limited services post-stroke. Specific impairments such as communication problems and physical limitations as well as unfavourable identity factors, such as pride and fears, were also described.

Conclusions: Rehabilitation professionals should refocus the services they provide to families, couples and friends to ensure that people with aphasia maintain a positive identity, optimal communication and satisfying relationships. Persons with aphasia should be empowered to ask for services in their community post-rehabilitation. Participation-based models of therapy may better serve the needs of people with aphasia and prepare them for living with aphasia.

Keywords:

• Stroke
• Aphasia
• Participation
• Environmental factors
• Personal factors
• Rehabilitation
• Speech-language therapy

This study was supported by a research grant from the Canadian Institutes of Health Research [grant number 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 organisations 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 thank all of the participants. We also thank our undergraduate students: Marie-Eve Lacroix, Isabelle Robillard, and Emilie Faubert. We express our thanks to Mathilde Blais, Mylène Fournier, Michèle Masson-Trottier, Marie-Odile Marcoux-Fortier, Mélissa Sauvé, Frédéric Messier and all the members of the research team including Louise Getty, France-Hélène Signori, and Martin Forest.