How patients experience progressive loss of visual function: a model of adjustment using qualitative methods.
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.
Hayeems
R Z
RZ
Toronto General Hospital, Adult Genetics Program, University Health Network, Toronto, Ontario, Canada M5G 2C4. robin.hayeems@uhn.on.ca
Geller
G
G
Finkelstein
D
D
Faden
R R
RR
D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D018450:Disease Progression; D005260:Female; D017144:Focus Groups; D006801:Humans; D007406:Interview, Psychological; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D012174:Retinitis Pigmentosa / Q000150:complications* / Q000523:psychology; D012649:Self Concept; D012959:Socioeconomic Factors; D014786:Vision Disorders / Q000209:etiology* / Q000523:psychology*; D019987:Persons with Visual Disabilities / Q000523:psychology