“Leave the thorn, enjoy the rose” identity formation of people with aphasia in the early rehabilitation phase

Abstract

Background and purpose: Aphasia can profoundly affect an individual's identity. Yet studying identity in people with aphasia presents methodological challenges, as language, our primary medium for self-expression, is disrupted. This study explored how people with aphasia experience and reshape identity during early rehabilitation, using narrative inquiry and visual ethnography. This approach aims to deepen understanding of identity formation and change, and the potential value of creative arts in supporting meaningful research participation. Methods: Twenty-two people with post-stroke aphasia (aged 34–62) were recruited from Dutch rehabilitation centers six to eight weeks post-admission. Each participant took part in two sessions: one individual session and one follow-up session attended by proxies. In the individual sessions, arts-based visual participatory methods were used to elicit narratives. Data analysis integrated the listening guide, embodiment, and the production of the image and the image itself. Results: Findings reveal that identity formation after aphasia is complex and ongoing, characterized by multiple, complementary, and sometimes conflicting voices. Affirming, coping, and challenging voices interact within key tensions: connection versus disconnection, agency versus disempowerment, and personal growth versus living loss. Visual participatory methods were valued by participants. The creative process provided an alternative way to express experiences when verbal communication was limited. Conclusions: Combining narrative inquiry and visual ethnography, supported by skilled facilitation, offers a promising way to reveal identity changes and support people with aphasia in sharing their experiences. This study shows that using integrated approaches is not only methodologically necessary but also ethically important for enabling meaningful participation.