Exploring the experiences of persons living with albinism in Ghana

Abstract

Albinism is typically misunderstood, resulting in myths and misconceptions about the condition in different parts of the world. This study explores the misconceptions about albinism in Ghana through the lens of lived experiences of persons living with albinism (PLWA) and other relevant stakeholders to ascertain the level of socio-cultural exclusion. This study used qualitative methods and a purposeful non-probability sampling strategy was employed to gather diverse perspectives of information from participants in this study. The participants with albinism, their families, and experts were interviewed in semi-structured street interviews about their lives and the impacts of albinism on their human rights. The results revealed the extent of the suffering and denials experienced by persons living with albinism in different communities in Ghana. It reveals that due to certain misconceptions many PLWA were denied access to education, brutalised, killed, some lost their source of livelihood, and dehumanised. The study recommends that the government should organise intensive public education and health awareness in collaboration with civil society organisations to demystify albinism and promote the human rights of PLWA in Africa and Ghana in particular.