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.

Keywords: caregivers; explanatory models; intellectual disability; parents.