Identifying psychosocial challenges and introducing coping strategies for people with albinism

Abstract

Albinism refers to a group of genetic disorders that, following genetic mutations, lead to impaired melanin production, resulting in skin allergies and visual impairment in affected people. Visual impairment brings not only physical limitations and challenges but also many social problems, including psychosocial challenges, leading to different experiences in the lives of these people. To this end, using a qualitative content analysis approach, the present study aimed to identify psychosocial challenges and introduce coping strategies for people with albinism living in Tehran in 2021. The participants were people with albinism aged 20 to 40 years in Tehran. The participants were selected from among members of the Iranian Albinism Association (AMAL) using purposive sampling. The data were saturated through semi-structured interviews with 20 participants in the research sample. The collected data were analyzed using conventional content analysis. Analysis of the participants’ experiences revealed three main themes: (1) The challenges and difficulties of living with albinism, (2) welfare, specialized facilities, and support seeking, and (3) strategies for coping with psychosocial challenges. According to the findings, albinism, due to its limitations, brings many bitter and painful experiences in education, job finding, and marriage for affected patients. The condition is also associated with some limitations such as visual impairment affecting various aspects of the patient’s life and different developmental periods. Each person may have different interpretations of their challenges and thus seek unique strategies for coping with the challenges. The findings of this study can have some implications for mental health professionals and managers of relevant institutions and to become aware of the nature and complications of albinism, the challenges faced by people with albinism, and the special needs of these people. Findings from this study can be used to identify the relationship between albinism, the challenges of living with albinism, and the special needs of these individuals, by mental health professionals, related institutions, and psychosocial environments.