Intellectual Disability in the Context of a South African Population

Abstract

Childhood disabilities, including intellectual disabilities (ID), are thought to occur in 5–17% of children in developing countries around the world. In order to identify and describe the childhood disabilities occurring in a rural South African population, as well as the context in which they occur, a study was carried out in the Bushbuckridge district in the poor northeast part of the country. Altogether, 6,692 children were screened in their homes in eight villages using the Ten Questions questionnaire. This questionnaire was used by local‐trained field‐workers in interviews with mothers and other carers, to screen children for five disorders (viz., intellectual, hearing, visual and movement disorders, and epilepsy). Altogether, 722 (10.8% of the total sample) children, who screened positive, were examined at clinics in their villages by a pediatrician for diagnostic, treatment, and referral purposes. In addition, 100 traditional healers in the district were interviewed with a specially designed schedule of questions to assess their attitudes toward disabilities and their management of affected children. The results showed that 291 (4.3%) children had at least one of the five disabilities. ID occurred in 3.6%, epilepsy in 0.7%, visual disorders in 0.5%, movement disorders in 0.5%, and hearing disorders in 0.3%. More boys than girls with hearing disorders were receiving special education. Many of the affected children were not receiving treatment or education, resulting in a reduction in their quality of life. Traditional healers were attempting to treat epilepsy and seldom referred affected children to hospital, although effective treatment was available there. Genetic factors were involved in about half the conditions, but genetic services were negligible. Appropriate health, diagnostic, treatment, educational, and supportive services are required for children with disabilities, and awareness of their needs and the resources to meet them should be increased in this community.

A Systematic Review of Generic and Special Needs of Children with Disabilities Living in Poverty Settings in Low- and Middle-Income Countries

“…Service providers as well as primary caregivers reported on the special needs of children with disabilities and stated that these were often described in terms of lack of access to assistive devices such as wheelchairs, hearing aids, communication aids, specialized seating and standing frames (Hartley et al, 2005;Saetermoe, Gómez, Bámaca, & Gallardo, 2004) which can potentially impact negatively on children's physiological needs in terms of restricted mobility and limitations of self-care (Hartley et al, 2005). Poverty affected the families' possibilities of accessing rehabilitation and health care for their children with disabilities as transport to health care sites was often seen as too expensive; this was also described from both the primary caregiver's perspective as well as the service provider's perspective (Hartley et al, 2005;Kromberg et al, 2008;Saloojee, Phohole, Saloojee, & Ijsselmuiden, 2007;Yousafzai et al, 2003). The need of improved oral hygiene was described in one article (Shoaib et al, 2006) where the primary care givers revealed that children with intellectual impairment had significantly poorer oral hygiene when compared to typically developing children.…”

“…Misinformation about disability was highlighted in one study taken from the primary care giver's perspective, where mothers in the sample held the belief that their child's disability was temporary and looked for ways to "cure" the disability and make the child "normal" . Proper diagnoses and subsequent medical treatment at an early age was emphasized in several articles from both the primary caregivers and the service provider's perspectives (Hartley et al, 2005;Kromberg et al, 2008;Penny, Zulianello, Dreise, & Steenbeek, 2007). In some cases, as reported from both the service providers' and primary caregivers' perspective, receiving a correct diagnosis took a significant amount of time, which exacerbated the condition (Saetermoe et al, 2004).…”

Ghanaian traditional and faith healers' explanatory models of intellectual disability

“…These have typically been reported among parents in non-western countries, or among immigrants from nonwestern countries (e.g., Brolan et al, 2014;Mirza et al, 2009;Scior, Addai-Davis, Kenyon, & Sheridan, 2014). Although there are some reported claims by traditional healers about their ability to cure such disorders, Kromberg et al (2008) argue that the evidence is mostly anecdotal. Although there are some reported claims by traditional healers about their ability to cure such disorders, Kromberg et al (2008) argue that the evidence is mostly anecdotal.…”

Diagnostic, carrier and prenatal genetic testing for fragile X syndrome and other FMR-1-related disorders in Johannesburg, South Africa: A 20-year review

“…[1] However, a study in a rural South African (SA) population reported the prevalence to be 3.6%. [2] The most common cause of ID in SA is fetal alcohol syndrome, which occurs at the highest rate in the world and at epidemic proportions in some communities in the Western Cape Province. [3] Fragile X syndrome (FXS) is the most common inherited cause of ID in all populations.…”