The impact of stigma on people with albinism in Africa: a narrative review

Abstract

Oculocutaneous albinism (OCA) is a recessively inherited condition which affects about 1 in 5,000 people in Africa. The depigmentation of the skin and hair is very striking, unusual and unexpected, and stigmatisation has been ongoing for centuries. This narrative review asked: How does stigma related to OCA manifest in African settings, what drives it, what impacts does it have across health, education, psychosocial well-being and human rights, and what interventions have been proposed or implemented to reduce harm? The review was conducted using searches of PubMed and Google Scholar (up to June 2024), supplemented by targeted retrieval of policy and NGO reports; 60 sources met inclusion criteria and were synthesised thematically. Results showed that widely held cultural beliefs and myths, that originate in perceptions of difference cause, and perpetuate, stigmatisation. Maternal-infant bonding, schooling, social interactions, health, marriage, employment issues, personal safety and human rights may all be affected by the stigmatising behaviour of the community. Children as well as adults may be attacked for their body parts, believed to make powerful medicine in some countries. Healthcare workers’ stigmatising attitudes may result in poor delivery of essential health care services. Services that should be provided for people with albinism include appropriate healthcare, genetic counselling, and possibly general counselling to provide support and guidance for managing the condition and coping with the issues associated with endemic stigmatisation. In conclusion, stigma related to OCA in Africa is driven primarily by socio-cultural beliefs and reinforced by structural inequities, producing wide-ranging harms across the life course. Awareness programs are required to inform the public and dispel myths, specialised healthcare services need to be increased, and guidelines on managing albinism should be provided to health and educational professionals, so that incidents of stigmatisation may be minimised.