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

Abstract

ABSTRACTBackground 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.KEYWORDS: care partnersnarrativescript trainingoral readingaphasia AcknowledgmentsThe authors thank the participants and families and the members of the Wichita Adult Language Lab, Taylor Brandenberger, Sydney Brown, Ellasyn Heuer, Addison Powell, and Madison Zwanziger for serving as graduate clinicians and Sabrina Gooch, Logan Patterson, Emily Ray, and Madeline Rondeau for transcription support, and the audience of the Aphasia Access Leadership Summit 2021 Brag and Steal session for encouragement in the early phase of this project.CRediT Author StatementErin O’Bryan: conceptualisation, writing–original draft, review and editing, visualisation, investigation, supervision, analysis. Harold Regier: conceptualisation of therapy approach, writing–original draft. Katie Strong: conceptualisation, writing–original draft, review and editing, visualisation, analysis.Disclosure statementHarold Regier receives a small amount of royalties from the sale of his self-published book which is mentioned in the article. Erin O’Bryan is employed by Wichita State University. Katie Strong is employed by Central Michigan University. There was no funding for this project.Data Availability StatementThe participants of this study did not give written consent for their data to be shared publicly, so due to the sensitive nature of the research, supporting data is not available.Supplementary dataSupplemental data for this article can be accessed online at https://doi.org/10.1080/02687038.2023.2272956.