Despite ongoing efforts to educate the public about HIV, a new study by researchers from UCLA, the RAND Corp., Harvard University and Children's Hospital Boston has found that two-thirds of families with an HIV-infected parent experience fears about spreading HIV in the home.

The qualitative study is the first to interview multiple family members, including minor children, in families with an HIV-infected parent about their concerns over HIV transmission in the household.

"We found that many of the worries were based on misconceptions about how HIV is spread," said lead study author Burt Cowgill, a staff researcher at the UCLA|RAND Center for Adolescent Health Promotion. "We also learned that HIV-infected parents had legitimate concerns about contracting infections such as a cold, flu or chicken pox while caring for a sick child. This knowledge could help pediatricians to address children's specific fears about HIV transmission as well as help clinicians who care for the HIV-infected parents."

Between March 2004 and March 2005, the team conducted interviews with 33 HIV-infected parents, 27 of their minor children (ages 9 to 17), 19 adult children and 15 caregivers (spouses, partners, grandparents or friends). All HIV-infected parents had previously participated in the RAND Corp.'s HIV Cost and Services Utilization Study, a national probability sample of people over 18 with known HIV infection.

Interview questions were open-ended and broad to elicit a detailed description of family members' experiences. In addition, follow-up questions focused on whether respondents' fears subsided over time and what was done in the household to address them.

In a majority of the families, participants reported HIV transmission-related fears in the household. Concerns included acquiring HIV through contact with blood from a parent's cut, through saliva by sharing a bathroom or kissing, or by sharing food or beverages. HIV-infected parents were also concerned about catching an opportunistic infection from a sick child or other family member, and they were especially concerned about caring for a child with chicken pox, a cold or the flu.

Families addressed their fears by educating children about how HIV is spread and establishing household rules and taking precautions to reduce risks. However, some of the fears were based on incorrect information and beliefs.

"Fears about disease may substantially affect the relationship between the HIV-infected parent and child," said senior author Dr. Mark Schuster, chief of general pediatrics at Children's Hospital Boston and professor of pediatrics at Harvard Medical School. "It is critical not only to provide children with age-appropriate information on how the disease is transmitted, but also to clear up any misconceptions."

Findings from this paper and others coming from the qualitative study will inform researchers of the specific needs of families with an HIV-infected parent and aid in the development of interventions aimed at addressing their needs.

This research was supported by the National Institute of Child Health and Human Development and the Centers for Disease Control and Prevention. The authors have no financial ties to disclose.

In addition to Cowgill and Schuster, study authors included Laura M. Bogart, Rosalie Corona and Gery Ryan.

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