"I miss stars, too": a thematic analysis of the experiences of persons with retinitis pigmentosa using Reddit.

Abstract

Retinitis pigmentosa (RP) is a progressive retinal disorder that affects the emotional, psychological, and social lives of those afflicted. With limited effective treatments, understanding the personal challenges faced by individuals with RP is essential for developing holistic care strategies. Informed by a critical realist epistemology, posts and comments from two central subreddit threads with at least 30 comments each were extracted and analyzed using Braun and Clarke's reflexive thematic analysis. A total of 69 posts from 36 unique commenters were coded, and themes were derived through team discussions and an iterative process to identify recurring patterns in the data. Three key themes were identified: (1) navigating grief and loss, reflecting the emotional toll of progressive vision loss and the associated loss of independence and cherished activities; (2) establishing independence through coping mechanisms, which involved using technology, adapting hobbies, and emotional resilience to manage the impacts of RP; and (3) maintaining a delicate balance between hope and frustration with treatments, highlighting participants' mixed feelings toward emerging therapies like gene therapy and their perceived efficacy. In summary, the findings underscore the complex psychological and emotional challenges faced by individuals with RP and the need for more holistic care services. Understanding these experiences is crucial for healthcare providers, policymakers, and researchers to better support the RP community. Future research should focus on the psychological impacts of RP, the effectiveness of coping strategies, and outcomes of supportive interventions to enhance the quality of life of those affected.