Disclosure of Their HIV Status to Infected Children: A Review of the Literature

Since the introduction of highly active antiretroviral therapy (ART) in 1996, HIV-infected children often survive beyond adolescence. To assess worldwide trends in disclosure since ART was introduced, we reviewed articles that refer to disclosure of their status to HIV-infected children, and which described patient, health care provider and/or caregiver opinions about disclosure and/or reported the proportion of children who knew their diagnosis. Most studies (17 [55%]) were performed in low- or middle-income (LMI) countries. In the 21 articles that included information on whether the children knew their status, the proportion who knew ranged from 1.2 to 75.0% and was lower in LMI (median = 20.4%) than industrialized countries (43%; p = 0.04). LMI country study participants who knew their status tended to have learned it at older ages (median = 9.6 years) than industrialized country participants (median = 8.3 years; p = 0.09). The most commonly reported anticipated risks (i.e. emotional trauma to child and child divulging status to others) and benefits (i.e. improved ART adherence) of disclosure did not vary by the country's economic development. Only one article described and evaluated a disclosure process. Despite recommendations, most HIV-infected children worldwide do not know their status. Disclosure strategies addressing caregiver concerns are urgently needed.