1. Fears About HIV Transmission in Families with an HIV-Infected Parent: A Qualitative Analysis Burton O. Cowgill, MPH 1,2 ; Laura M. Bogart, PhD 3 ; Rosalie Corona, PhD 4 ; Gery Ryan, PhD 3 ; Mark A. Schuster, MD, PhD 1,2,3 1 Department of Pediatrics, David Geffen School of Medicine at UCLA, Los Angeles, CA 2 Department of Health Services, School of Public Health at UCLA, Los Angeles, CA 3 RAND Corporation, Santa Monica, CA 4 Department of Psychology, Virginia Commonwealth University, Richmond, VA Background As medical treatments for HIV continue to advance, more HIV- infected parents may choose to have children. Children may be affected by their parent’s HIV in multiple ways. Little is known about HIV transmission-related fears in families with an HIV-infected parent. Qualitative interviews with HIV-infected parents and affected family members were conducted to explore transmission-related fears. Methods We conducted semi-structured interviews with a subset of participants from the HIV Cost and Services Utilization Study (HCSUS) from March 2004-March 2005. Sample included: 33 HIV-infected parents, 27 of their children (9-17 years), 19 of their adult children (18-30 years), and 15 of their caregivers (spouses, partners, extended family, or friends) (Table 1). Qualitative analyses used a combination of inductive and deductive techniques to identify themes about HIV transmission-related fears. A Cohen’s kappa measured inter-rater agreement. Table 1. Selected Parent Characteristics Parent Variables (N=33)Value Female73% Mean Age (range)44.2 years (30-62) Race/Ethnicity African-American48% White27% Latino21% American Indian 3% Exposure/Risk Group Intravenous Drug User27% Men who had sex with men12% Heterosexual48% Other12% Results with Selected Quotations In about two-thirds of families, at least one family member identified an HIV transmission-related fear. Fears were often identified during the time shortly after the parent’s HIV diagnosis and disclosure to their children. An HIV-infected mother explained… “I used to clean my house constantly with bleach and everything, buy new toothbrushes every month… I don’t do that anymore…I guess I’ve become more aware of how the disease is passed along. As long as everyone is okay, there is no need to be overprotective in that way.” Parents most often expressed fears when they were cut and bleeding The daughter of an HIV+ mother recalled… “She [the HIV+ mother] was bleeding and my first reaction was to run toward her. She literally pushed me really hard away from her. She said, ‘Don’t come near me!’… And then she went to the bathroom and was you know washing it and she kept saying like, ‘Don’t come near me! Don’t come near me!’ And that was when it was so like real to me and I just, I don’t even know what I felt, but I felt like a whirlwind of emotions.” Some families were concerned about hugging and kissing the HIV+ parent. An HIV+ father remembered… “Well, a little different, especially my son. He used to kiss me good night, but now it’s good night dad. He’ll kiss me maybe on the neck or ear.” Some children worried about transmission in the bathroom and while eating. The adult daughter of an HIV+ mother explained… “Back to me worried about catching it. I think there were a few times that she [HIV-positive mother] like used my razor if I left it in the bathroom or something and I never said anything to her, but that kind of bothered me. Like, oh, what if I can catch it, and I went and got tested several times.” Parents expressed fears about acquiring an opportunistic infection. An HIV+ father shared… “You get a cough, someone gets your cough. You get a cold, so you think they [family members] are going to get infected. You get one of their colds you think you are going to die.” Children’s fears were positively and negatively influenced by parents, extended family members, school programs, and popular media. An HIV+ mother recounted… “Oh I’m going to be nice and call them mother and grandmother on their father’s side. [My daughter] would come every time I had visitation. She was told not to eat the food that I cooked because she could get AIDS and die. So after she would eat, not to hurt my feelings, she would go to the bathroom and purge, stick her fingers down her throat.” Families coped with their fears by educating themselves about HIV transmission, setting ground rules in the household, and taking precautions. Discussion It might be useful for interventions designed for families affected by HIV to include age appropriate information on the modes of HIV transmission, including the ways in which HIV is not transmitted in the household. Clinicians and others treating families with an HIV-infected parent may be able to offer information and counseling about HIV to allay their fears. Acknowledgments This study was supported by the National Institute of Child Health and Human Development (RO1 HD40103) and the Centers for Disease Control and Prevention (U48/DP000056). The original data collection was supported by the Agency for Health Care Policy and Research (U-01HS08578).