Challenges of Retinitis Pigmentosa (RP) Patients in Iran and Sweden (A Comparative Study)

Abstract

This research is based on a comparative qualitative study to raise the challenges of Retinitis Pigmentosa (RP) patients regarding the three levels of their life as well as the relationship of these levels through living with RP, in two different contexts of Sweden and Iran, in order to contribute in improvement of RP patients’ life conditions and reducing their difficulties. Fifteen semi-structured interviews were conducted to RP patients from Iran and Sweden. Five respondents lived in Iran and ten, in Sweden. Three respondents were services providers; an Ophthalmologist, a social worker and an eye pedagogue. The research questions include the patients’ challenges in three levels of life, the influence and interconnection of three levels of their life, their coping with their disease and their participation in improving the life conditions of disabled people.

According to research findings, RP patients in both countries deal with stigmatization and exclusion in three levels of their life. Lack of public awareness and stigmatized normative public approach lead to exclusion of RP patients from social support, family and friend relationships. It also excludes them to get social services and public facilities (e.g. public transport) in macro level. Community is a good resource for RP patients to increase their individual and social acceptance. These activities provide opportunities to expand their social network, exchange their experiences about coping with RP, share their common experiences and decrease social segregation. RP patients’ participation in formal and informal communities is an example of utilizing their collective power to influence the efficient factors in macro level, factors such as policy makers and authorities, in order to enforce their rights and fulfill their needs.