Increasing numbers of perinatally HIV-infected children are surviving into their teens and beyond. Research and clinical reports suggest that many HIV-infected children, particularly those younger than 13 years, do not know they are HIV infected owing to parental concerns about the impact on their mental health. This study examines patterns of HIV status disclosure to 77 perinatally HIV-infected ethnic minority children (aged 3–13 years), and explores the association between knowledge of HIV status and emotional and behavioral outcomes. The majority of children in this study (70%) did not know their HIV status. On average, children who knew their HIV status were older and tended to have lower CD4%. Child knowledge of HIV status was not associated with gender, ethnicity, caregiver education, parent–child relationship factors, type of placement (biological vs adoptive), or other health status indicators. As hypothesized, HIV status disclosure to infected children did not result in increased mental health problems. There was a statistical trend for children who knew their HIV status to be less depressed than children who did not know. Also, greater social disclosure (e.g. communication of child’s status to family and friends) was found when the child had an AIDS diagnosis or lower CD4%, as well as when the caregiver was HIV negative, African American and not the child’s biological parent. In conclusion, pediatric HIV infection remains a highly stigmatized issue that is difficult to discuss with the infected child and others. Yet, contrary to the beliefs of many caregivers, disclosure did not result in increased mental health problems.
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