Human rights of siblings and albinism in Africa: a family-centred approach

Siblings have a strong and unique bond because they often have shared experiences. However, having a sibling with a disability, such as albinism, poses extraordinary circumstances that could impact family dynamics. In addition to visual impairments and sun sensitivity, persons with albinism in sub-Saharan Africa face inordinate stigma, discrimination, and safety concerns stemming from widespread misconceptions about albinism. Research on albinism and human rights is a rapidly evolving field, and the experiences of sibling dyads impacted by albinism have received little attention. Applying an Interpretive Description qualitative design, we conducted individual and dyadic interviews with seven dyad siblings impacted by albinism in five African countries. This study revealed four themes: (1) Internalizing Processes, (2) Normalizing Responses, (3) Stigmatizing Experiences, and (4) Encompassing Support. The findings highlight the importance of a strong family system and a human rights-oriented, family-centred approach to address the concerns of persons with albinism and their families.