Caregivers’ and parents’ explanatory models of intellectual disability in Khayelitsha, Cape Town, South Africa

Abstract

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.

The Participation of Children with Intellectual Disabilities: Including the Voices of Children and Their Caregivers in India and South Africa

“…In South Africa, on the other hand, the provision of activities is more likely to be linked to an educational or economic opportunity. Other differences not explored in this paper could also be the availability of support from others, the number of children in the household, or the cultural beliefs of the caregivers regarding children with disabilities, their needs, rights and abilities [ 57 , 58 ].…”

‘I Waited for It Until Forever’: Community Barriers to Accessing Intellectual Disability Services for Children and Their Families in Cape Town, South Africa

“…The focus was much more on social isolation, the cost and difficulty of accessing care, and the sense that services might not be able to help. Though this lack of faith in services may in part be explained by participants' explanatory models of ID as not changeable [24], there seems also to be a more general feeling of isolation and of being cut off from services.…”

“…As part of a larger study on caregiving of children with ID in urban Cape Town, South Africa [24], we became interested in a sub-group of families who had never used the ID services available to them, or who had stopped using them. We report here on interviews with this small group of families.…”

Community participation of families of children with profound intellectual and multiple disabilities in South Africa

“…Most of the models are attached to derogatory terms used to refer to persons with intellectual disability and hence worsen the stigma and discrimination. There is also a tendency by both the community members and service providers to misunderstand the distinction between intellectual disability and mental illness (Capri et al., 2018; Mkabile & Swartz, 2020), which may obscure the specific support needs of those who live with one or both impairments. Lack of knowledge and understanding of PIMD among health service providers also compounds the barriers faced by these families within the South African health system (Bornman & Alant, 2002).…”