Aphasia and literacy—the insider's perspective

BACKGROUND: Few studies have investigated how people with aphasia (PWA) experience literacy skills. Taking the insider's perspective is a way to increase understanding of the individual experiences of literacy among PWA, which may have clinical implications. AIMS: To describe how literacy, i.e., reading and writing, is experienced in everyday life by PWA and to gain insight into the part played by literacy skills in their lives. METHODS & PROCEDURES: A qualitative descriptive research approach was taken. In‐depth interviews were conducted with 12 PWA (six women and six men) who had all lived with aphasia for at least 6 months post‐stroke. The interviews were analysed using qualitative content analysis. OUTCOMES & RESULTS: One overarching theme emerged from the data: literacy as an ongoing recovery process. Based on this overarching theme, two subthemes were identified: changes in conditions for literacy (experiences of reading and writing initially post‐onset compared with experiences at the time of the interview); and facing expectations about literacy (participants’ own and other people's expectations of them in terms of literacy). CONCLUSIONS & IMPLICATIONS: The findings are important at a general level in that they indicate that PWA are able to articulate their individual experiences and thoughts about literacy, i.e., reading and writing. Specifically, PWA in this study experience literacy as playing an essential part in their lives and the findings imply that personal experiences are important in the design of reading and writing interventions in speech and language therapy.