“I Wasn’t Just Sitting There”: Empowering Care Partners through the Aphasia-Friendly Reading Approach

Abstract

ABSTRACT Background Sharing stories is a way that people make meaning out of life and connect with others socially. For couples in which one person has aphasia, the ability to have conversations and share stories may be disrupted. Many people with aphasia benefit from support in constructing and sharing stories with others. To share experiences with his wife, the spouse of a person with aphasia developed an intervention approach called Aphasia-Friendly Reading that supports oral storytelling and sharing stories with others. Aim The current study explored the experiences of care partners in a pilot study using the Aphasia-Friendly Reading approach. Methods & Procedures Three people with aphasia and their care partners participated in the Aphasia-Friendly Reading pilot study one hour per week for 9 to 14 weeks. Following the pilot program, each care partner was interviewed about their experience participating in the study. Interview data was analysed using reflexive thematic analysis. Outcome & Results Three major themes were identified: (1) Care partner empowerment, (2) Collaboration, and (3) Different therapy experience. Care partners expressed that they were “totally involved” in all stages of the intervention and that they highly valued being involved. Further, care partners reported specific ways that they started taking initiative in supporting their partner with aphasia outside of the sessions. Care partners described the project as collaborative, noting the role of all participants in story co-construction and mentioning how they both taught and learned from graduate student clinicians. The care partners reported that the project was distinctly different from their previous therapy experiences, noting that they appreciated the person-centeredness of the stories, the fun of working together in sessions, and the opportunity to share their stories with the aphasia group. Conclusion The results indicated that the care partners experienced benefits of being actively included in the Aphasia-Friendly Reading approach. The approach appears to be harmonious with core values of the Life Participation Approach to Aphasia and research on the value of considering aphasia to be a family issue rather than an individual issue.