Despite the increasing availability of free antenatal care and prevention of mother-to-child transmission (PMTCT) services in South Africa, MTCT is still 15%-40%. If transmitted, the child must be informed of their serostatus at an early stage to ensure treatment adherence. Yet, adolescents and young children continue to have higher rates of poor treatment adherence and virological failure than adults. This appears to point to parents/guardians struggling with accepting the child’s diagnosis, raising a child with HIV and disclosing their status.

The study employed a qualitative research design via individual interviews with 25 participants. It found that parents/guardians experience several fears when raising a perinatal HIV-infected child, such as the fear of a negative change in their relationship with the child, of the child becoming rebellious if they are told their HIV status, and the possibility of the child committing suicide. Other experiences related to constant secrecy regarding the child’s HIV status, avoiding engaging the child about their status and issues around self-blame.

Parents/guardians further highlighted family conflicts due to stigma and discrimination, overreliance on healthcare workers for information/knowledge and financial struggles as key challenges. Strategies identified to deal with their situation included broadening their support structure (e.g. through involving family), normalising the situation for the child and planning better (e.g. by saving money). The benefits that come with parents/guardians telling their children about their HIV serostatus identified included improved relationships with their children and improved treatment adherence.