Personal disability identity in retinitis pigmentosa

Area of Science:

• Psychology
• Ophthalmology
• Rehabilitation Science

Background:

• Personal disability identity (PDI) is a positive self-concept for individuals with disabilities.
• Understanding PDI is crucial for psychological well-being and adaptation.
• Retinitis pigmentosa (RP) presents unique challenges impacting identity formation.

Purpose of the Study:

• Examine the reliability and structural validity of the Personal Disability Identity Scale (PDIS) in adults with RP.
• Investigate correlates of PDI, including general self-efficacy, mobility tool use, and demographic factors.
• Explore the relationship between PDI components (denial and affirmation) and these correlates.

Main Methods:

• Cross-sectional online survey of 206 adult participants diagnosed with RP.
• Utilized the Personal Disability Identity Scale (PDIS).
• Measured general self-efficacy, mobility tool use, age at diagnosis, education, and demographics.

Main Results:

• Confirmatory factor analysis supported a two-factor PDI model: disability denial and disability affirmation.
• Lower disability denial was significantly associated with higher general self-efficacy.
• Both disability denial and affirmation correlated with mobility tool use, but not age at diagnosis.

Conclusions:

• Future research should separately consider disability denial and affirmation within PDI.
• Reduced disability denial is a predictor of enhanced general self-efficacy in individuals with RP.
• Clinical interventions should focus on fostering personal disability acceptance over normalization.