Living with Albinism in Ghana: Perceptions, Myths and Support Systems

Abstract

Introduction: Oculocutaneous albinism (OCA) is a genetic disorder that manifests as a reduced or absent skin, hair and eye melanin pigmentation resulting in visual, skin disorders including skin cancer and stigmatization. This contributes to the negative overall experience of Persons with Albinism (PWA). These individuals are subjected to abuse generated by unhelpful misconceptions, myths and cultural beliefs in many African communities. This study highlights the lived experiences of persons with albinism in Ghana including their unique challenges and support systems they utilise to cope with these challenges. Methodology: The study used a qualitative research design, primarily a phenomenological approach. The target population includes persons living with albinism in the selected regions in Ghana. A purposive sampling technique was utilised to select participants. In-depth interviews and semi-structured interviews were employed. A total of 24 participants were interviewed. Thematic analysis was done using Atlas.ti software to analyse the data. Results: This showed that participants did not view albinism negatively but accepted it as a condition despite various challenges faced. This was in contrast to the largely negative community perceptions of albinism. Participants also recounted difficulties coping with challenges such as health, educational and economic challenges that significantly affect their quality of life. There were also instances of human rights violations and real threats to the lives of PWA in some communities. Family acceptance and support play a major role in the overall well-being of PWAs. Conclusion: Persons with albinism reported various myths and beliefs about albinism persisting in their communities. Application of the socioecological model to the perspectives of persons with albinism helps to understand the experiences of PWA in a structured manner. It provides opportunities for intervention that may be more effective and impactful. This study suggests supporting PWA may be more effective with a multi-level intervention approach.