Factors Associated with the Successful Vocational Rehabilitation of Individuals with Usher Syndrome: A Qualitative Study

Abstract

This qualitative study investigated the remembered lived experiences of six individuals who were diagnosed with Usher syndrome, the effect that the progressive condition had upon their lives, and their experiences with vocational rehabilitation. Usher syndrome is an autosomal recessive condition that presents as deafness or hearing loss with comorbid retinitis pigmentosa sometimes with vestibular areflexia. The participants recalled details of their own reaction to the diagnoses as well as the reactions of their parents. Themes were identified in their responses that included independent dependence, Usher support, parental reaction, lowered expectations, hope, and ongoing change. The participants, three men and three women, reported periods of adjustment and sadness as well as hopes for their future, career accomplishments, and social interactions.