Caregivers of children living with HIV must decide when and how to tell a child about the diagnosis, and they often make that decision with little guidance.
How disclosure unfolds
Working in rural Zimbabwe, the team followed 372 caregiver and child pairs recruited from 21 HIV care clinics, with children ages 9 to 15, to document how disclosure unfolds in practice. Two thirds of the children knew they had HIV, a higher proportion than earlier studies had reported, but only 27 percent understood the name of their illness, how they had been infected, and that they could transmit the virus. Over the following year, nearly 60 percent of children who had not known learned their status, while few gained that fuller understanding.
Fears and lived experience
Within the same cohort, the team followed 123 caregivers whose children did not yet know their status through the disclosure process itself, comparing what those caregivers feared beforehand with what they experienced afterward. The reactions they anticipated largely did not occur, and there was no evidence of clinically meaningful increases in children’s difficulties following disclosure. Together the findings indicate that disclosure is more common but less complete than previously assumed, and that supporting caregivers early, by addressing their fears and their assumptions about how children will cope, matters as much as deciding when to tell.
Key Publications
Finnegan, A., Langhaug, L., Schenk, K., Puffer, E. S., Rusakaniko, S., Choi, Y., Mahaso, S., & Green, E. P. (2019). The prevalence and process of pediatric HIV disclosure: A population-based prospective cohort study in Zimbabwe. PLoS ONE, 14(5), e0215659.
Puffer, E. S., Finnegan, A., Schenk, K., Langhaug, L., Rusakaniko, S., Choi, Y., Mahaso, S., Simmons, R., & Green, E. P. (2022). Comparing fears about pediatric HIV disclosure to the lived experiences of parents and guardians: A prospective cohort study in Zimbabwe. Psychology and Health.