Fear of stigma, beliefs, and knowledge about HIV are barriers to early access to HIV testing and disclosure for perinatally infected children and adolescents in rural communities in South Africa

Abstract

Background: The majority of HIV-infected children in resource-limited countries are not aware of their HIV status because of the various reasons responsible for the delay in seeking HIV testing for children. The aim of the study was to determine the prevalence and barriers to testing and disclosing the HIV status of children aged between 5 and 18 years.
Methods: This was a cross-sectional survey involving 405 caregivers of HIV perinatally infected children receiving anti-retroviral treatment (ART) in primary health care facilities in a rural district of Mpumalanga province in South Africa.
Results: The prevalence of disclosure was 27%, and disclosure was done to promote adherence (26%) or because it was the child’s right to know his/her status (43%). Children’s age was significantly associated with disclosure (AOR = 2.81, p < 0.000, CI 1.64–4.81). Concerns that children were too young and would not understand the implications of HIV diagnosis (74.5%) or would not keep the diagnosis secret (7%) were reasons for non-disclosure. Over half of the caregivers intended to disclose status when the child was aged between 12 and 15 years. In response to children’s questions about medication, caregivers substituted HIV with other less stigmatising conditions (32%).
Conclusion: The prevalence of disclosure was low and delayed till the child was above 10 years of age. The main barrier to disclosure was fear of stigma, or fears of the child telling others about their HIV status with consequences of stigma. The need for guidelines to provide caregivers with disclosure skills, to overcome the barriers that prevent disclosure, is crucial.

Keywords: caregivers, disclosure, HIV testing, perinatal infected children, rural setting