EXTENDED REPORT

How patients experience progressive loss of visual function: a model of adjustment using qualitative methods

R Z Hayeems^1,2, G Geller^2,3, D Finkelstein^2,4 and R R Faden²

¹ Adult Genetics Program, Toronto General Hospital, University Health Network, Canada
² The Phoebe R. Berman Bioethics Institute, Johns Hopkins University, Baltimore, MD, USA
³ Genetics and Public Policy Studies, Johns Hopkins School of Medicine, Baltimore, MD, USA
⁴ The Wilmer Eye Institute, Johns Hopkins School of Medicine, Baltimore, MD, USA

Correspondence to:
Correspondence to:
Robin Z Hayeems
MSc, ScM, Toronto General Hospital, Adult Genetics Program, 200 Elizabeth Street, 3 Eaton South Room 401B, Toronto, Ontario, Canada M5G 2C4; robin.hayeems{at}uhn.on.ca

Background: People with retinitis pigmentosa (RP) experience functional and psychological challenges as they adjust to progressive loss of visual function. The authors aimed to understand better the process of adjusting to RP in light of the emotional suffering associated with this process.

Methods: Adults with RP were recruited from the Foundation Fighting Blindness and the Wilmer Eye Institute in Baltimore. Focus groups and semistructured interviews addressed the process of adjusting to RP and were audiotaped and transcribed. The transcripts were analysed qualitatively in order to generate a model of adjustment.

Results: A total of 43 individuals participated. It was found that, on diagnosis, people with RP seek to understand its meaning in their lives. Mastering the progressive functional implications associated with RP is contingent upon shifting personal identity from a sighted to a visually impaired person. In this sample, six participants self identified as sighted, 10 self identified as in transition, and 27 self identified as visually impaired. This adjustment process can be understood in terms of a five stage model of behaviour change.

Conclusions: The proposed model presents one way to understand the process of adjusting to RP and could assist ophthalmologists in meeting their moral obligation to lessen patients’ suffering, which arises in the course of their adjustment to progressive loss of visual function.

Abbreviations: FFB, Foundation Fighting Blindness; RP, retinitis pigmentosa

Keywords: retinitis pigmentosa; progressive loss of vision; psychological challenges; adjustment model; qualitative methods

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