Understanding significant others’ experience of aphasia and rehabilitation following stroke

Abstract

Purpose: It is currently unknown how rehabilitation services contribute to significant others’ adjustment to stroke with aphasia since their experience of rehabilitation has not been studied before. The purpose of this study was thus to understand significant others’ experience of aphasia rehabilitation within the context of post-stroke rehabilitation. Methods: Individual interviews were carried out with 12 significant others of persons who became aphasic as a result of a stroke and were discharged from rehabilitation in the past 3 months. Data were analyzed with a grounded theory approach. Results: “Being centered on the aphasic person” was the core category triggered by the significant other’s perception of the stroke survivor’s vulnerability and his/her feelings of attachment towards that person. Through their interactions with professionals, significant others assumed that rehabilitation was also centered on the aphasic person; a perspective that was reinforced. Consequently, significant others participated in rehabilitation as caregivers and expected rehabilitation to meet their caregiver needs but not other personal and relational needs. Their appraisal of rehabilitation was thus related to the satisfaction or not of caregiver needs. Conclusions: With a greater sensitivity to significant others who focus on the stroke survivor and disregard their own needs, rehabilitation professionals and especially speech-language therapists, can assist families in reestablishing communication and satisfying relationships which are affected because of aphasia.

Implications for Rehabilitation

• This qualitative study shows that significant others of aphasic stroke survivors experience rehabilitation as services focused on the person who had the stroke.

• Significant others’ satisfaction with rehabilitation is not related to the fulfillment of their personal (e.g. resuming their activities) and relational needs (e.g. good communication with the person with aphasia).

• When offering interventions targeting significant others’ needs, rehabilitation professionals should emphasize the rationale for these interventions so that significant others grasp the intention and potential benefits of these offers.

• Aphasia
• rehabilitation of speech and language disorders
• significant others
• speech-language therapy
• stroke

Acknowledgements

The authors thank the participants for sharing their experience. They also thank research assistants: Andréanne Laberge-Poirier, Annie Leclerc and Mélissa Perroux. Authors acknowledge the work and support of their students, Mélissa Di Sante, Anne Mingant, Florence Yung, and research team members Carole Anglade and Michèle Masson-Trottier. This project is a part of the first author’s doctoral dissertation.