The support needs for caregivers of children with albinism in South Africa

Background: Caregivers of children with albinism often face different challenges, such as stigma, discrimination and targeted violent crimes; therefore, they not only focus on the health needs of their children, but also on the systemic and societal barriers in the communities they find themselves in. Therefore, systemic and societal barriers impose psychological and emotional burdens on caregivers. Aim: To explore and describe the support needs of caregivers of children with albinism in South Africa. Setting: The study was conducted in the Eastern Cape province and Limpopo province. Methods: A qualitative design employing a critical ethnographic approach was used to explore and describe the support needs of caregivers of children with albinism in South Africa. Purposive sampling was used to recruit 18 caregivers from Limpopo and Eastern Cape provinces. Ethnographic interviews were used to collect data, and thematic analysis was used to analyse the data. Results: This study highlighted the need for caregivers to have access to established peer support groups to ensure continuity of care. The need for psychosocial support arises as caregivers navigate the caregiving process for their children in an uncertain environment. The need for caregivers to be educated about albinism and their rights to ensure that they receive adequate support is underscored. Conclusion: Support is an important aspect for caregivers of children with albinism, as it dictates how their child is perceived. Contribution: The family and community support play a vital role; therefore, education should not only be limited to caregivers but also to their families and communities where they raise their children.