From self-awareness to self-identification with visual impairment: a qualitative study with working age adults at a rehabilitation setting

Abstract

Objective: To explore the experience of vision loss, focusing on working age patients' self-awareness of impairment and self-identification with the impairment. Design: A cross-sectional and qualitative study, using semi-structured interviews. Setting: A specialized rehabilitation centre and a low vision unit at a public hospital. Participants: A convenience sample of 38 patients between the ages of 20 and 65, with sight loss caused by a serious ophthalmological condition acquired after the age of 18, and doing their rehabilitation. Main outcome measures: A semi-structured interview, addressing three core areas: the emotional impact of vision loss; adjustment; and social support. Interviews were transcribed, coded and analysed by two independent researchers. Results: Seven themes emerged from interviews. Changes in patients' identity, achievement and future life projection arose as being the main transformations caused by vision loss. Self-awareness of impairment appeared associated with the patients' first contact with their loss, while self-identification with the impairment arose connected with the later embodiment process of the vision loss. Conclusions: Patients’ self-awareness and self-perceptions of impairment appear to be two important milestones in the adjustment process to vision loss. Their assessment and monitoring over the rehabilitation period might help to promote impairment acceptance and rehabilitation outcomes.