Surveying the Experiences of People with Albinism in Iran: Qualitative Research

Abstract

Background: Oculocutaneous albinism (OCA) is a genetic disease that causes the impaired conversion of melanin, thus leading to the development of vision impairment and skin/hair-related complications. This disease can also cause extensive psychosocial consequences for patients with this disease. Objectives: This research aimed to provide a deep understanding of the lived experience of people with albinism (PWA) in Iran. Methods: This research has been conducted using a qualitative approach. The sampling was done as purposive and continued until reaching data saturation. The data were collected through deep semi-structured interviews, and then analyzed via thematic analysis, after transcribing the interviews and removing the similar codes, 1077 initial codes were extracted. The categories were coded using open coding indirect process alongside several times of reading the text and allocating relevant codes through constant comparison of codes with each other. Results: The results obtained from data analysis led to extraction of three main themes including: (1) challenges; (2) perceived sources of support; and (3) psychological mechanisms of coping with challenges. Conclusions: Based on the findings of this research, the main challenges of PWA were categorized into two major groups: Body-based challenges and psychosocial challenges. The perceived support sources of these people against these challenges were social supports and access to facilitator tools. The psychological mechanisms were divided into adaptive and maladaptive sub-categories. The findings of this research can provide a deeper understanding of the needs of these people for providing optimal care and ultimately promote their psychosocial well-being and also can be employed in developing interpretive theories about the biopsychosocial conditions of PWA.