Date Published: May 22, 2019
Publisher: Public Library of Science
Author(s): Amy Finnegan, Lisa Langhaug, Katie Schenk, Eve S. Puffer, Simbarashe Rusakaniko, Yujung Choi, Simbarashe Mahaso, Eric P. Green, Marcel Yotebieng.
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.
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.
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.
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.
An estimated 2.1 million children are living with HIV . Despite a compelling evidence-base for the benefits of developmentally appropriate pediatric HIV disclosure, many of these children are unaware of their condition, do not understand the importance of remaining adherent to antiretroviral therapy, and enter adolescence without the knowledge that they could pass the infection to others. The American Academy of Pediatrics and the World Health Organization recommend that HIV-positive children should be informed of their serostatus [2–4] when they reach school-age, but disclosure is not an easy process for parents and guardians and many keep it a secret or reveal limited details. Caregivers who avoid disclosure often believe that their child is too young to understand or that disclosure will cause psychological harm, prompt the child to ask difficult questions, or share this new information with others, potentially exposing the child and family to stigma [5–10]. Yet, research suggests that there is more to be gained from appropriate disclosure than risked by secrecy. Children who know their status have been found to exhibit higher self-esteem, fewer behavior problems, and less psychological distress—including fewer symptoms of depression and anxiety—compared to their non-disclosed peers [11–16]. After disclosure, they may also have improved social functioning and more social support, positive attitudes about their health, and greater hope for the future [6, 7, 12, 16, 17].
This study is among the first to draw a population-based sample of caregivers of children receiving ART or pre-ART at HIV clinics, estimate the prevalence of pediatric disclosure as reported by caregivers, and track the process of disclosure over time among the non-disclosed caregivers. Based on a cross-sectional sample of 372 caregivers of children and adolescents aged 9 to 15, we estimated that the overall prevalence of disclosure—that is, the caregiver reported that the child knows he or she has a virus called HIV—was 66.9%.