Prevalence of disability in HIV-infected children attending an urban paediatric HIV clinic in Johannesburg, South Africa

With the success of evolving cART, HIV has become a chronic condition, however, children vertically infected with HIV have been shown to have developmental difficulties and disabilities. This study aimed to investigate the prevalence of disabilities among a group of HIV infected children in South Africa and whether they are being referred to and accessing support services. A cross-sectional study was conducted at a paediatric HIV clinic in Johannesburg. Parents were interviewed about their child using the Ten Question Screen for Disability questionnaire along with a follow-up questionnaire. Data from the child's clinic file were recorded. Of the 200 children whose parents were interviewed, 50.5% experienced disabilities, where 58.4% of those had more than one co-existing disability. The most commonly reported disabilities were, developmental delay (27%), cognitive and behaviour difficulties (21%), communication difficulties (17%) and physical disabilities (13%). Of the children who reported disability only 46% had been referred to one or more of the following support services; Audiologist, Occupational Therapist, Physiotherapist, Psychologist and/or Speech and Language Therapist. A history of low birth-weight, tuberculosis, lower respiratory tract infections and low pre-ART CD4% were found to be factors associated with the presence of developmental difficulty and/or delay. The prevalence of disability in children infected with HIV is high and these children are not being referred to and/or accessing the appropriate support services. Government policy and clinic practice need to shift the focus of management of children with HIV, to integrate services that can assist with developmental potential and quality-of-life.