The authors of the study, published in the new edition of AIDS, aren't suggesting that parents hide their condition from their children.
"But without appreciation of the long process involved when disclosing, parents are likely to be unprepared for the consequences of disclosure," says study co-author Martha B. Lee, a researcher at the University of California, Los Angeles.
While heterosexual transmission of the AIDS virus in the United States remains fairly rare, parents can be found in all the major risk groups, including gay men and intravenous drug users. Thanks to the development of powerful drugs called protease inhibitors, thousands of people with AIDS are living indefinitely without obvious symptoms.
"One of the greatest challenges for a parent living with HIV is whether, how and when to disclose their HIV status to their children," Lee says. While there are an increasing number of HIV-positive parents and doctors often advise them to disclose their illness to their children, there are few studies into how and what they tell their children.
Researchers at UCLA recruited 301 HIV-positive parents who lived in New York City and received welfare. The researchers interviewed them and their 395 children periodically for five years.
Three out of four parents disclosed their illness to older children, defined as 12 years of age and older, while only 40 percent did so with younger children.
"The older kids may have more knowledge and understanding about HIV," Lee says. "Therefore, the child's maturity may influence the parent's decision to disclose. Another possibility is that parents are concerned about their children encountering HIV-related stigma, and the older kids are expected to be able to deal with stigma better than the young kids."
Another expert who has studied parents who are HIV-positive says they often make decisions based on their perceptions of how their children can handle the disclosure. They consider whether the children "are strong and happy and can handle tough news, or are distressed and need to be protected from it," says Laurie Bauman, a professor of pediatrics at Yeshiva University's Albert Einstein College of Medicine in New York City.
The new study found that mothers were more likely to reveal their HIV infection to their children than men.
"Women may be more verbal and apt to share feelings and what's going on with them," Lee says. "Also, we think that the mothers may be seeking support from their children."
There was no difference in disclosure rates between ethnic groups.
However, the researchers did find the children of parents who disclosed their illness were more likely to engage in "problem behaviors," including unprotected sex, alcohol and drug use, and criminal activity.
Parents and their doctors must work together to determine if disclosure is best for an individual family, Lee says. Also, they must consider the downside of keeping the truth to themselves.
"If parents are discouraged from disclosing, an implicit message is communicated that HIV is stigmatizing and must be hidden," Lee says.
Bauman says secrecy has other costs.
"Secrets in general are considered undesirable in a family because they create distance," she says. "Children pick up that there are secrets, and they'll project on them things that aren't really true. Young children, particularly, will imagine that things are much worse than they are."
What To Do
To learn more about HIV/AIDS and treatments, visit the U.S. Centers for Disease Control and Prevention or the National Institute of Allergy and Infectious Diseases.