The prevalence and process of pediatric HIV disclosure: A population-based prospective cohort study in Zimbabwe

INTRODUCTION: The objective of this study was to estimate the prevalence of pediatric HIV disclosure in rural Zimbabwe and track the process of disclosure over time. METHODS: We recruited a population-based sample of 372 caregivers of HIV-positive children ages 9 to 15 to participate in a survey about disclosure. Using data from this cross-sectional sample, we then identified a prospective cohort of 123 caregivers who said their HIV-positive child did not know his or her HIV status, and we followed this non-disclosed cohort of caregivers through two additional waves of data collection over the next 12 months. At each wave, we inquired about the timing and process of disclosure and psychosocial factors related to HIV disclosure. RESULTS: The overall prevalence of disclosure in the cross-sectional sample was 66.9% (95% CI 62.0 to 71.5%). Only 26.9% of children knew how they were infected and that they can transmit the virus to others (i.e. “full disclosure”). Older children were more likely to know their status. Among the non-disclosed caregivers at baseline, nearly 60% of these children learned their HIV status over the course of the 12-month study period, but only 17.1% learned how they were infected and that they can transmit the virus to others. Most caregivers were satisfied with their child’s disclosure experience. Caregivers who had not disclosed their child’s HIV status to the child worried that disclosure would lead to stigma in the community, provoke questions from their child they would not be able to answer, or cause the child to reject the caregiver in anger. CONCLUSIONS: This study suggests that rates of pediatric HIV disclosure may be larger than typically reported, but also reinforces the idea that most children do not know key details about their illness, such as how they were infected and that they can infect others.