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Less than half of parents infected with HIV tell their children about the diagnosis

Parents are reluctant to disclose their HIV infection to their children, primarily because they fear the emotional impact. As a result, fewer than half (44 percent) of children are aware of their parent's HIV infection, according to a new study supported in part by the Agency for Healthcare Research and Quality (HS08578 and T32 HS00046).

Researchers interviewed 274 parents from the HIV Cost and Services Utilization Study, a nationally representative sample of HIV-infected adults receiving care for HIV. HIV-infected parents reported that 44 percent of their children ages 5 to 17 years old were aware of their parent's HIV status. Another 14 percent of children were unaware of their parent's HIV status, but knew their parent had a serious illness. In 28 percent of households with more than one child, some, but not all, children knew their parent's HIV status. Parents had discussed the possibility that HIV or AIDS might lead to the parent's death with 90 percent of children who knew about their HIV infection.

Parents did not disclose their HIV status to their children primarily due to worry about the emotional consequences of disclosure for the child (67 percent), worry that the child would tell other people (36 percent), and not knowing how to tell their child (28 percent). Many parents also feared that their children would reject them or lose respect for them. Certain parents were less likely to disclose their HIV infection than others. These included those who contracted HIV through heterosexual intercourse (rather than homosexual intercourse or intravenous drug use), those with higher CD4 cell counts (indicative of greater disease progression), those who were more socially isolated, and those with younger children. According to the parents, 11 percent of children who were aware of their parent's HIV infection worried they could catch HIV from their parent, 5 percent had experienced other children not wanting to play with them, and 9 percent had been teased or beaten up.

See "Do children know their parent's HIV status? Parental reports of child awareness in a nationally representative sample," by Rosalie Corona, Ph.D., Megan K. Beckett, Ph.D., Burton O. Cowgill, M.P.H., and others in the May 2006 Ambulatory Pediatrics 6(3), pp. 138-144.

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