Fears About HIV Transmission in Families with an HIV-infected Parent

A Qualitative Analysis

Published In: Pediatrics, v. 122, no. 5, Nov. 2008, p. e950-e958

Posted on RAND.org on January 01, 2008

by Burton O. Cowgill, Laura M. Bogart, Rosalie Corona, Gery W. Ryan, Mark A. Schuster

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Research Questions

  1. What fears do families have about transmitting HIV between infected parents, minor and adult children, and other caregivers?
  2. To what extent are their fears based on misconceptions of HIV transmission?

OBJECTIVE: Children of HIV-infected parents may be affected by their parents' disease even if not infected themselves. Because of advances in HIV treatment that have reduced the risk for vertical HIV transmission from mother to child, more HIV-infected adults are having children. Few studies have examined whether families with an HIV-infected parent experience fears about transmission to children and how they address such fears. In this article, we describe transmission-related fears in families with an HIV-infected parent. METHODS: We used semistructured qualitative interviews, conducted in person from March 2004 to March 2005, with 33 HIV-infected parents, 27 minor children who were 9 to 17 years of age, 19 adult children, and 15 caregivers (adult family members or friends who helped care for the children and/or parents) to investigate their fears about HIV transmission. The parents are a subset from the HIV Cost and Services Utilization Study, a study of people in care for HIV throughout the United States. We analyzed the interview transcripts for themes related to transmission fears. RESULTS: In many of the families, participants identified 1 HIV transmission-related fear. Themes included specific fears related to blood contact, bathroom items, kissing/hugging, and food. Families addressed their fears by educating children about modes of HIV transmission and establishing rules or taking precautions to reduce the risk for HIV transmission in the household. HIV-infected parents were also concerned about catching opportunistic infections from a sick child. CONCLUSIONS: Many of the fears experienced by HIV-infected parents and their children were based on misconceptions about modes of HIV transmission. Pediatricians and others who treat these children may be able to offer counseling to allay fears that family members have about household transmission of HIV.

Key Findings

  • Two-thirds of participants with an HIV-infected parent reported having fears of HIV transmission among family members.
  • Infected parents worried about transmitting the virus to children, and also about getting sick while caring for a sick child.
  • Some children expressed concern about contracting HIV from their parents while hugging or kissing them, or sharing food.
  • Pediatricians and other HIV clinicians could help educate families about HIV transmission in the home and offer age-appropriate strategies to address fears.

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