The renegotiation of social roles in chronic aphasia: Finding a voice through AAC

Abstract

Background: Aphasia robs people of their previously established identities and limits their ability to fully participate in life activities. In an effort to help people with aphasia (PWA) successfully participate in life activities, clinicians often call upon caregivers to act as proxies to determine their communicative needs. However, PWA often learn to use their residual linguistic abilities and augmentative and alternative communication (AAC) strategies to renegotiate their social roles to participate in life activities.

Aims: The aim of this phenomenological case study was to (a) explore the social role changes experienced by PWA, (b) understand the use of communication strategies when attempting to reclaim previous social roles, and (c) determine whether discrepancies existed between PWA and their potential proxies regarding social role changes/adaptations.

Methods & Procedures: A phenomenological qualitative approach was employed through 1–2-hour semi-structured interviews. Participants included three triads of people, which included one person with chronic, moderate-severe aphasia, their primary caregiver, and another member of their social network. The researchers used inductive analysis to identify segments of the transcripts that lead to insights regarding the adaptation of social roles following stroke and subsequent aphasia.

Outcomes & Results: Three major themes unfolded that influenced the renegotiation of the social roles of three PWA: interpersonal life changes, community interactions and hobbies, and AAC. Incongruity was noted between the triads of participants. Caregivers tended to report more severe life changes than the PWA and the other members of their social network.

Conclusions: Every participant expressed shifts in their social and interpersonal lives, community interactions and hobbies as well as communication changes since the onset of aphasia. However, AAC strategies provided PWA a means to communicate their opinions, feelings and find their own voice when redefining their roles and identity.

Keywords:

• Social roles
• Stroke
• Aphasia
• Augmentative and alternative communication
• AAC
• Treatment planning

Notes

¹Questions 1–5 served as “ice breakers” to help the participants ease into the interview. Questions 6–15 served as probes to target social role changes and adaptations following the stroke.