Telling Children with Perinatal HIV About Their HIV Serostatus: Healthcare Workers’ Practices and Barriers to Disclosing in a South African Rural Health District

In South Africa, caregivers and healthcare workers (HCWs) lack confidence and skills to disclose to children with perinatal HIV (PHIV). Moreover, existing disclosure guidelines do not provide strategies on how to approach disclosure. Although the caregiver has been endorsed as a responsible person to disclose to the child, the involvement of HCWs in the process is critical. Yet research suggests that many HCWs are reluctant to perform disclosure. This study examines the involvement in, practices of, and barriers against HCWs’ disclosing to children with PHIV. METHODS: We conducted 8 focus group discussions with a total of 51 HCWs comprising nurses, lay counsellors, social workers, and dieticians. The HCWs were selected from 23 health facilities in a rural South African health district by purposive sampling. Data were transcribed verbatim, and data analysis followed qualitative thematic analysis. RESULTS: A high proportion of HCWs had no formal training in pediatric disclosure and some had never disclosed to children. Those who routinely disclosed approached disclosure as an ongoing process that unfolded over time. They ensured caregiver readiness as a necessary step in the disclosure process. The main barriers for HCWs to participate fully in the disclosure process were the lack of relevant disclosure guidelines, inadequate disclosure skills, and a shortage of skilled staff. Inadequate skills affected the confidence of the HCWs to disclose, while a lack of standardized disclosure guidelines and HCWs’ reliance on personal experience during disclosure resulted in confusion and uncertainty among them due to the inconsistencies in their approach to disclosure. CONCLUSION: This study confirms the urgent need to train HCWs to attain skills and confidence in disclosure. Training HCWs in standardized disclosure counselling would lead to an increase in the rate of disclosure to children. It is essential that the district adapt the disclosure guidelines to the local context for use in health facilities.