The Experience of Living With Retinitis Pigmentosa: An In-depth Exploration of Patients’ Challenges

Abstract

Objective Progressive visual impairment is one of the problems that threatening the health of patients and has the negative effects on their abilities. This study aimed to explore the health concerns of patients with Retinitis Pigmentosa (RP). Materials & Methods A qualitative inductive approach was used. Eleven patients with RP, participated in this study in Iran. Patients were selected through purposeful sampling. Data collection was done through two methods of in-depth semi-structured individual interviews and field notes. Data analysis was performed using approach of conventional content analysis. Results The categories of "perceived health threat" and "perceived support needs", were extracted. The category of perceived health threat included sub-subcategories of "gradual decline in physical function", "sustained fluctuations in mental health", and "weakening of social capability". "need for socio-economic support", "need for educational support", "need for psychological support", and "need for a personal assistant" were extracted as sub-subcategories of perceived support needs. Conclusion RP Patients faced with the problem of abilities impairment in various physical, mental, and social dimensions and need for support in society. So, to improve the health of these patients, members of the health group are suggested to develop a context-based wholistic care program through multidisciplinary cooperation.

Keywords

• retinitis pigmentosa
• visual impairment
• health
• care
• qualitative research