Insights on Literacy From Stroke Survivors With Aphasia: A Mixed-Methods Inquiry

Purpose: Individuals with aphasia commonly experience reading and writing difficulties, negatively impacting everyday communication and life participation. Using mixed methods, this study aimed to understand literacy experiences described by individuals with aphasia and explore how their perspectives are related to test performance and other demographic factors. Method: Twenty-one stroke survivors with aphasia completed reading and writing testing and shared their perspectives through a close-ended survey and an open-ended interview about literacy abilities and experiences. Quantitative methods were used to compare pre- and poststroke self-ratings and explore associations between self-ratings and demographic factors. Qualitative methods were used to identify themes in the interviews. The data sets were merged to derive mixed-methods results for a more in-depth view of participants' perspectives. Results: Significant decreases in perceived literacy abilities were found; however, there were no differences in literacy importance or enjoyment pre- to poststroke. Reading and writing test scores were correlated with self-rated abilities but not with importance, enjoyment, or frequency of reading and writing. The thematic analysis process identified four main themes: Feelings about literacy, Literacy challenges, Literacy supports, and Literacy goals. Conclusions: The data indicate that individuals with aphasia highly value reading and writing and are heavily invested, despite recognized challenges, in using and improving these skills. Therefore, assessments and treatments addressing literacy in aphasia are critical, and individuals with aphasia should be invited to share their literacy experiences and goals, allowing for more person-centered clinical resources to be collaboratively constructed.