Living with Retinitis Pigmentosa in Türkiye: Diagnosis, Independence, and Access to Care

Background: Retinitis pigmentosa (RP) is a progressive inherited retinal dystrophy that affects daily functioning, psychological well-being, and social participation. Although quantitative research describes disease burden, less is known about how individuals experience progressive vision loss in everyday life and within healthcare and social contexts. Methods: This qualitative study used semi-structured face-to-face interviews with adults diagnosed with RP. Purposive sampling was applied to ensure variation in demographic and clinical characteristics. Interviews were conducted in a tertiary ophthalmology clinic in Erzincan, Türkiye, between June and October 2025. Audio recordings were transcribed verbatim and analyzed using Braun and Clarke’s reflexive thematic analysis. Reporting followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Results: Sixteen participants (P1–P16) were included. Five themes were identified: (1) making sense of the illness and the diagnostic journey; (2) functional loss and the negotiation of independence; (3) psychological adaptation and identity reconstruction; (4) social relationships and social encounters; and (5) interaction with systems and the environment—accessibility and healthcare. Participants described early symptom normalization, delayed diagnostic pathways, and uncertainty persisting after diagnosis. Independence was shaped by safety concerns, environmental barriers, and reliance on support. Psychological adjustment fluctuated between fear of progression and efforts to sustain resilience. Social participation was influenced by support networks, concerns about being a burden, and stigma linked to invisible disability. Conclusions: Living with RP extends beyond visual impairment; building on prior qualitative work, our findings contextualize these experiences in Türkiye, highlighting how accessibility gaps, bureaucratic encounters in public institutions, and cost barriers within healthcare and public services can shape uncertainty, independence, and social participation.