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

What is it about?

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 interaction, expression, and mutual understanding. Research shows that care partners are an essential piece of the recovery process for PWA after stroke, and it is the responsibility of speech therapists to provide care partners with the tools they need to best help their loved one. Aphasia is known to have a profound impact on care partners, as well as individuals with aphasia. Care partners are at risk for experiencing reduced quality of life as well as biological and psychological consequence when caring for a stroke survivor. Previous research has investigated the challenges faced by care partners of PWA, however, there is limited research looking at the perceived needs of these care partners. Our study investigates the perspectives of care partners on their loved one’s aphasia diagnosis and the learning process that comes with it. Care partners highlight the complexities of the experience of living as a care partner of someone with aphasia in this study. Our study contains data from nine care partners of adults with post stroke aphasia, who are greater than 6 months after their loved ones stroke. Each care partner had daily interactions with their loved one with aphasia. Semi-structured focus groups containing four care partners of PWA were conducted to gather a variety of information from participants. Focus group transcripts were transcribed and coded. Three main themes arose during thematic analysis. Themes are main ideas of takeaways based on what the care partners communicated with us. Theme #1: Education and Information are critical areas of need for care partners of people with aphasia. Theme #2: Being a care partner for a person with aphasia is challenging, but also has some unexpected positives, although the challenges far outweigh the positives. Theme # 3: The presence of both structured and unstructured supports influenced well-being for care partners. Each theme was found to have sub-themes as well, which highlight the complexities of the caregiving experience. Findings from this study highlight areas of perceived need and support for care partners of people with aphasia. These areas include gaps in dissemination of research to care partners, as well as the need for increasing mental health supports and readily available resources for care partners of people with aphasia. Results also highlight rewarding aspects of being a care partners and areas of resilience and strength. The firsthand report of the care partner experience is essential in creating a family centered plan of care for people with aphasia and their support team. Results of this study also serves as an important call to action for future studies as it may guide researchers towards the areas care partners perceive as most needed.

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Photo by Nani Chavez on Unsplash

Photo by Nani Chavez on Unsplash