"Curious but Overwhelmed": Care Partner Perspectives on Education, Resources, and Coping After Aphasia Diagnosis

Care partners of people with aphasia (PWA) are faced with unique challenges, as their loved one's loss of communication may create specific barriers to expression, mutual understanding, and interaction. Previous research has investigated the challenges faced by care partners of PWA. However, there is limited research that investigates the perceived aphasia education needs of these care partners. The purpose of the present study is to investigate the perspectives of care partners on education, challenges, benefits, and supports they experience when caring for a loved one with aphasia. This work may provide insight into the complexities of the experience of living as a care partner of someone with aphasia.

We conducted three virtual focus groups, each including four participants. We asked each group a series of semistructured interview questions. The first and second authors coded the data and derived themes.

Following analysis of the focus group data, our team identified themes that highlighted the importance of education, the challenging and rewarding aspects of being a care partner to a PWA, and the power of a support system for care partners.

Care partners experience a range of different education needs, challenges, and benefits. Thus, there is no single plan of care that best fits all care partners; education should be person centered based on the needs of each family unit. These results serve as a guide for clinicians as well as underscore the importance of exploring first-hand accounts of care partner experiences in future studies.