Barriers to Self‐Empowerment Among Individuals With Retinitis Pigmentosa

Self‐empowerment (SE) is the process of developing the necessary problem management abilities through interacting with the society. However, there are barriers to SE which may reduce problem management abilities, particularly among individuals with chronic health problems. This study aimed at exploring the barriers to SE among individuals with retinitis pigmentosa (RP). This inductive qualitative study was conducted from February 2019 to September 2020. Participants were nine individuals with RP, one patient family member, and five RP institute staff. They were purposefully and theoretically selected from the RP Institute of Iran, Tehran, Iran. Data were collected through fifteen semistructured interviews with a mean length of seventy minutes and were analyzed through inductive content analysis. The barriers to SE among individuals with RP were grouped into two categories, namely, debilitating effects of RP and sociocultural poverty. The four subcategories of these categories were chronic course of RP, debilitating consequences of RP, inappropriate culture of the society, and limited socioeconomic facilities. These subcategories and categories were grouped into the main theme of combination of an erosive disease and an inappropriate context. There are physical, mental, environmental, and sociocultural barriers to SE among individuals with RP which can threaten their independence. Supportive groups and need‐based care plans are essential to reduce these barriers and improve SE among these individuals. Implementing such a program requires the multidisciplinary collaboration of healthcare providers’ team.