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A qualitative self-study of Retinitis Pigmentosa

University College Cork, Ireland, r.fourie{at}ucc.ie

Retinitis Pigmentosa (RP) is a retinal dege nerative disease causing progressive blindness. Most research on RP is biomedical, and mostly from an observer perspective, therefore poorly reflecting the lived experience of having RP. Accordingly, the researcher conducted a retrospective qualitative self-study, to analyse reflections on his own experience of diagnosis and receiving a mobility cane, as contained in emails sent to friends and colleagues. This analysis yielded a number of interesting themes significant to the RP experience, namely diagnosis, impact and dealing with RP. Reference is made to literature encouraging ophthalmologists to be actively involved in the facilitation of adjustment to loss of vision. Other significant issues relevant to visual impairment, such as the stigma associated with the long cane and challenging the dominant social discourse regarding disability, are discussed. In addition, the importance of qualitative research to elicit the stories of blind individuals is highlighted.

Key Words: adjustment • blindness • disability • qualitative research • Retinitis Pigmentosa • self-study

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