Abstract
BackgroundThe 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.ObjectivesThe aim of the current systematic review was to investigate experiences of caregivers and parents of children with intellectual disability in Africa.MethodWe 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.Results164 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.ConclusionCaregivers 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.
Highlights
Despite the higher prevalence rate of intellectual disability (ID) in low- and middle-income countries (LMIC) compared with high-income countries (Maulik et al 2011), there has been limited research in LMIC and in Africa (Adnams 2010; Mckenzie, McConkey & Adnams 2013)
In this study, many participants worried about taking their child out of the house; felt ashamed or embarrassed about their child’s condition; felt a need to hide the problem from people in the community; made an effort to keep their child’s condition a secret and worried that people would be reluctant to marry into their family. The results demonstrate both positive and negative experiences of those caring for people with intellectual disability (PWID) in Africa across all levels of the social system
Findings of the review reveal that caregivers of children with ID in Africa face challenges regarding the lack of critically required specialised services for PWID in their countries
Summary
Despite the higher prevalence rate of intellectual disability (ID) in low- and middle-income countries (LMIC) compared with high-income countries (Maulik et al 2011), there has been limited research in LMIC and in Africa (Adnams 2010; Mckenzie, McConkey & Adnams 2013). Other studies have demonstrated that parents may experience high levels of stress during the caring process, especially when a child presents with a challenging behaviour (Hassall, Rose & McDonald 2005). This situation is exacerbated for parents and caregivers living in low-income countries, with parents reporting more severe levels of stress, severe sadness, family difficulties, financial difficulties, stigma, shame and discrimination (Azar & Badr 2010; McKenzie & McConkey 2016; Sen & Yurtsever 2007; Tilahun et al 2016). 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
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