African families’ and caregivers’ experiences of raising a child with intellectual disability: A narrative synthesis of qualitative studies

Abstract

BACKGROUND: The prevalence of intellectual disability was high in Africa, particularly amongst low socio-economic communities. Despite this, there was limited literature on primary caregivers and parents of people with intellectual disabilities regarding their experience raising an individual with the condition, especially within the African context. OBJECTIVES: The aim of the current systematic review was to investigate experiences of caregivers and parents of children with intellectual disability in Africa. METHOD: We used strict eligibility criteria to identify suitable studies. We identified Medical Subject Headings (MeSH) terms and other keyword terms and, after conducting searches in electronic databases, identified articles that met the inclusion criteria for articles published between 1975 and the end of 2019. RESULTS: 164 articles were assessed for eligibility. Nine studies met the review's criteria. Six major themes emerged: understanding of intellectual disability (ID), worries about the future, burden of care, lack of services, coping strategies and stigma and discrimination. CONCLUSION: Caregivers of children with intellectual disability in Africa faced substantial challenges. Current findings suggested that there was the need for both formal and alternative healthcare workers to work together towards an understanding and management of intellectual disability in Africa.