Aphasia and literacy—the insider's perspective

Abstract

BackgroundFew 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.AimsTo 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 & ProceduresA 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 & ResultsOne 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 & ImplicationsThe 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.

"The brain can't cope": Insights about reading from people with chronic aphasia

“…Post-aphasia, most people were still motivated to read and were finding pleasure in reading but also reported some negative feelings, for example, frustration, finding it difficult. These mixed feelings are consistent with the findings of other studies (Kjellén et al, 2017;Knollman-Porter et al, 2015). The reported feelings seem to reflect the chronic nature of the participants' aphasia, the time they had had to adjust to their difficulties and attempts to resume some reading activities.…”

“…The interviews provide valuable data about the 'insider' perspective (Parr, 2001) in previous studies (Kjellén et al, 2017;Knollman-Porter et al, 2015;Parr, 1995), extensive individual variability was seen in reading ability, preferences and practice.…”

“…There was a contrast between P1 who repeated "it's a waste of time" and other individuals who expressed hard work, perseverance and commented on what they had achieved. This determination may emerge from the need for hope and positivity, particular character traits or strengths (Brown, Worrall, Davidson, & Howe, 2012) or perceived improvement (Kjellén et al, 2017).…”

“…A more recent study (Kjellén, Laakso, & Henriksson, 2017), considered literacy post-aphasia, with an increased focus on the literacy demands imposed by technology and the potential value of technology in supporting literacy; this study again focused predominantly on writing. Twelve participants with chronic, mild to moderate aphasia were interviewed about their current experience of reading and writing, their feelings about literacy, changes in their literacy skills due to the aphasia and then across their recovery.…”

Increased Agency through Screens and Co-Creation – Literacy Practices within a Group of People with Aphasia at a Swedish Folk High School

“…Garcia Obregon (2002) studied the literacy practices of one specific person with aphasia, concluding that literacy had an important and complex role in his life. Kjellén, Laakso and Henriksson (2017) interviewed 12 individuals with aphasia and concluded that literacy was an ongoing recovery process for them. None of these studies include groups of people with aphasia, as does this current study, nor were they based on ethnography.…”