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

Abstract

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.

Healthcare teams' ethical obligations towards care of adolescents' living with human immunodeficiency virus disease

“…This obligation has also been recognized by participants in similar studies (Vreeman et al, 2010 ). Healthcare team members faced challenges in the process of disclosing HIV status to adolescents living with HIV and receiving care at the Temeke CTC—a finding similar to those from other studies (Madiba & Diko, 2021 ). These challenges resulted from parents' nondisclosure or delayed disclosure of HIV status to their child or from their provision of false information, such as by telling the adolescent that he or she had a less stigmatizing disease like sickle cell anaemia rather than HIV.…”

Support provided by outreach team leaders to caregivers of HIV/AIDS orphans in the North-West Province of South Africa

“…In line with previous research, a qualitative study carried out in the Eastern Cape of South Africa found that healthcare workers (HCWs) used a variety of techniques to assist caregivers with disclosure [51]. These included talking with caregivers to nd out what their primary disclosure challenges were and teaching them how to disclose and handle the emotional responses of children after disclosure [51]. The cross-sectional survey about health care workers (HCWs) perspectives on disclosure to HIV-infected children conducted in Gauteng and Mpumalanga Provinces of South Africa revealed different results regarding who is entitled to disclose [52].…”

“…Another interesting nding revealed by this study was that the OTLs were responsible for providing caregivers of HIV/AIDS orphans with any kind of support during disclosure. In line with previous research, a qualitative study carried out in the Eastern Cape of South Africa found that healthcare workers (HCWs) used a variety of techniques to assist caregivers with disclosure [51]. These included talking with caregivers to nd out what their primary disclosure challenges were and teaching them how to disclose and handle the emotional responses of children after disclosure [51].…”

“The Peer Educator Is the Game-Changer of My Life”: Perceptions of Adolescents Living with HIV in DR Congo on Involving Peer Educators in the Process of HIV Disclosure

“…Literature on the key person or appropriate person to the disclosure seems divergent. Existing literature indicate that adolescents and their parents/caregivers prefer disclosure by caregivers with assistance from HCWs as they have the accurate knowledge of HIV [ 18 , 20 , 44 ].…”

“…Several approaches to the disclosure of HIV status have been described [ 6 ]. Each of these places particular emphasis on the role of parents and health care workers (HCWs) in disclosing to children [ 17 , 18 , 19 ] without exploring the potential role that other individuals (peers,…) might play in the process of disclosure [ 20 , 21 ]. All the more, research shows that caregivers’ communication with children about HIV is inadequate [ 17 ].…”