Personal Disability Identity in Retinitis Pigmentosa

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Abstract

Purpose/Objective: Personal disability identity (PDI) refers to a positive self-concept as a person with a disability. This study examined the reliability and structural validity of scores on the Personal Disability Identity Scale (PDIS; Hahn & Belt, 2004) and correlates of PDI in adults with retinitis pigmentosa (RP). Research Method/Design: Two hundred six adult participants with RP completed a cross-sectional online survey measuring PDI, general self-efficacy, mobility tool use, age at diagnosis, education level, and demographic variables. Results: Confirmatory factor analysis (CFA) supported a two-factor model of PDI: denial of disability and affirmation of disability. Findings from multiple linear regression indicated that lower disability denial in individuals with RP was associated with higher general self-efficacy. Both disability denial and disability affirmation were associated with use of mobility tool, but not with age at diagnosis. Conclusions/Implications: Future research on disability identity may benefit from a separate consideration of disability denial and disability affirmation. Lower disability denial predicts higher general self-efficacy in RP. Clinical implications include supporting personal disability acceptance rather than attempting to “normalize” individuals with disabilities.

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