Amsterdam 2015
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| Abstract #2165 - Time to talk? Disclosure and HIV | ||||
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Session: 29.4: Time to talk? Disclosure and HIV (Parallel) on Thursday @ 11.30-13.00 in C202 Chaired by Bouko Bakker, Philippe Adam Authors: Presenting Author: Mrs Sphindile Machanyangwa - University of KwaZulu-Natal, South Africa |
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| Additional Authors: | ||||
| Aim: In South Africa (SA), increased availability of anti-retroviral treatment (ART) for pregnant women and children has reduced new cases of pediatric HIV, but also increased numbers of surviving adolescents who were perinatally HIV-infected (PHIV+). Many of these youth remain unaware of their HIV+ status. Knowledge of seropositivity has significant implications regarding adolescents’ risk behaviors and treatment adherence. However, little is known about the disclosure process for caregivers of PHIV+ youth in SA. | ||||
| Method / Issue: In response to the need for effective and sustainable mental health care, adherence support, and risk behavior prevention programmes for PHIV+ youth, the VUKA Family Program was introduced in two Department of Health (DOH) hospitals in KwaZulu-Natal, SA to PHIV+ youth (9-14 years old) and their families. Its efficacy is currently being studied using PRISM (Practical, Robust Implementation and Sustainability Model) to examine how the interaction between interventions and recipient characteristics (settings, staff and youth/family members) influences implementation and integration outcomes. One enrollment criterion is the adolescent’s awareness of his/her HIV status. Among families interested in participation, 189 out of 350 (54%) were initially excluded because children did not know their HIV+ status. Caregivers reported they struggled with how to disclose to their children. HIV counsellors at these health facilities felt ill-equipped to support and guide caregivers in the disclosure process. Using PRISM to respond to recipient needs and promote sustainable change, VUKA staff trained HIV counsellors from these sites to assist caregivers with disclosure. Training emphasized working with caregivers to consider the child’s age, mental status and readiness to learn their diagnosis and presenting disclosure as a process rather than a single event. Counsellors responded positively to the training and felt better prepared to address the complexity of disclosure and reassure and guide caregivers. VUKA staff continues to refer caregivers to counsellors for disclosure support, then follow up after 2-3 months regarding study enrollment. Disclosure support has become part of routine care at the health centers. | ||||
| Results / Comments: The disclosure process is a crucial component in supporting and caring for PHIV+ adolescents, and may pose an obstacle to caregivers enrolling children in interventions that require knowledge of HIV status, such as VUKA. It also has significant implications in terms of guilt and concerns of caregivers, who experience relief after disclosing to their children. To address project enrollment issues, VUKA staff have taken on an unexpected role, working with clinic counsellors to encourage and support disclosure. Counsellors are trained to address complex issues surrounding disclosure (e.g. guilt, stigma, and limited knowledge) and support caregivers as they disclose to children. This support is now available to all families, regardless of participation in VUKA. Additional support is provided to families that ultimately enroll in VUKA. VUKA has been instrumental in modifying service providers’ standard of care regarding disclosure assistance, as lay counsellors have been equipped with skills to facilitate caregiver decision-making around disclosure. VUKA also demonstrates that it is ethically important to address impediments to health service access that are not necessarily part of the research protocol. | ||||
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