BackgroundIntellectual disability (ID) is the most prevalent disability in the world. People with intellectual disability (PWID) frequently experience extreme violations of numerous human rights. Despite greater prevalence in South Africa than in high-income countries, most ID research currently comes from the Global North. This leaves us with few contextually sensitive studies to draw from to advance inclusive citizenship.ObjectivesOur scoping review aims to investigate pertinent ID rights issues in South Africa, synthesise quantitative and qualitative studies, and provide a synopsis of available evidence on which to base future work. We aim to clarify key concepts, address gaps in the literature and identify opportunities for further research.MethodWe followed strict eligibility criteria. Medical subject heading terms were entered into seven databases. Seven reviewers worked independently, two per paper. Quantitative and qualitative data extraction forms were designed. We followed Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines and registered a protocol. An inductive approach enabled a thematic analysis of selected studies.ResultsBy following PRISMA guidelines, 82 studies were assessed for eligibility of which 59 were included. Ten sub-themes were integrated into four main themes: the right not to be discriminated against, the right to psychological and bodily integrity, the right to accommodating services and challenges to rights implementation.ConclusionPeople with intellectual disability face compound difficulties when trying to assert their constitutionally entitled rights. This ongoing project requires serious commitment and action. Statutory obligations to nurture every South African’s human rights naturally extend to PWID and their supporters who forge ahead in a disabling environment.
Background
Post‐apartheid, understanding and management of intellectual disability remain poor in South Africa, complicated by various contextual and cultural explanations used to describe and conceptualize this condition.
Method
We conducted 20 semi‐structured interviews with primary caregivers and parents of children with intellectual disability residing in Khayelitsha, a low‐income setting in Cape Town, South Africa. We used Kleinman's Explanatory Models (EMs) of illness to explore terms used to describe and conceptualize this condition.
Results
Carers’ explanatory models included biomedical causes, injuries during pregnancy or birth, as well as spiritual causes. It was reported that there were significant difficulties in accessing services and support, and difficulties with coping in the context of extreme poverty and deprivation.
Conclusions
Current findings highlight a need for collaboration between the biomedical and alternative healthcare systems in educating carers and parents regarding intellectual disability.
African families' and caregivers' experiences of raising a child with intellectual disability: A narrative synthesis of qualitative studies', African Journal of Disability 10(0), a827.
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