Growing up HIV-positive may bring its own culture. In many families, there has been a history of less than open communication about HIV. These secrets became part of their culture early on as parents were dying of AIDS and their children were placed in the custody of others. Particularly in the case of younger HIV-positive children, there was a sense that, as they were not going to live and would not understand, they did not need to be burdened by the painful details of their parent's illness. In other words, these secrets were not initiated by the children. Yet, when children grow up in such an environment, keeping secrets becomes a skill and a way of being that is learned. Under normal circumstances, children will often hide things from their parents. In this case, information was hidden from the child and so a pattern was already begun, placing this population at unusual and unfortunate risk. Now we are expecting teens who may want to be secretive about their condition to change the culture in which they have grown up. Yet it is the actions of the adults in a family that most influence the actions of children. It is difficult to teach open and honest communication in this altered situation.

In addition to the issues surrounding disclosure of HIV status, there was frequently a reluctance to tell those children who were adopted about their adoptive status:

One adoptive mother, the biological aunt, had not told her 14-year-old of his HIV status. The medical team was working with her to disclose this information, both because the teen was at an age where sexual activity was on his agenda and because he wanted to get working papers for which he needed his birth certificate. The aunt's reluctance to tell her son his HIV status was due to the fact he was old enough to figure out that if he was HIV-positive and she was not, then she was not his biological mother. This is a secret she had kept for 14 years and it was clear that she did not want to reveal it now.

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