OCTOBER 2009

The Growing Shadow of HIV: How It Affects the Children of Those Infected

When we think about the impact of HIV on children, the focus is usually on the transmission of the disease from mothers to their children through pregnancy. However, the effects of parental HIV on children are much broader than the transmission of the disease itself. When parents have any disease, children can suffer emotionally, particularly if the family is not open about the health problems or has misconceptions about the condition. Such concerns are even more pronounced for more stigmatizing health problems, such as HIV.

To get a better handle on this issue, RAND researchers have drawn on a nationally representative data set—the HIV Costs and Services Utilization Study, or HCSUS—to examine the impact of parental HIV on children.

The Growing Legacy of HCSUS

When it comes to HIV, policymakers need reliable information on the health care services that persons with HIV disease are receiving and on the costs of those services. To provide that information, researchers have been working with data from the HCSUS, which was funded through a cooperative agreement between the Agency for Healthcare Research and Quality (AHRQ) and RAND and was active from September 1994 to October 2000.

HCSUS is a nationally representative probability sample of HIV-positive persons 18 years or older who received care in the United States during a two-month period in early 1996. HCSUS data have helped RAND researchers develop a better understanding of the U.S. HIV population, the mental health and substance abuse issues that this population faces, and disparities in access to care, including whether HIV patients get the dental care they need because of fear of contagion.

The Broader Toll of HIV on Children

In its most recent use of HCSUS data, RAND researchers examined how the children of HIV-positive parents are affected by the disease. Because life expectancies for HIV-infected parents continue to grow thanks to improvements in treatment, the number of children living with an HIV-infected parent will also continue to grow. A series of studies have looked at some of the issues they face, including misconceptions about transmitting HIV, fear of prejudice and discrimination, family disruption, and lack of planning for their future care.

There are many misconceptions in the general population about how HIV can spread, but few studies have examined how such misconceptions shape parent-child interactions. In a study of HIV-infected parents, 42 percent feared catching opportunistic infections from their children, and more than a third feared transmitting HIV to their children. And while many concerns were well-grounded fears about transmission through blood contact, some were based on transmission misconceptions, such as through bathroom items, kissing or hugging, and food. Such fears end up limiting parent-child interactions: Forty percent of parents interviewed reported avoiding physical interactions with their children either a "little" or "a lot" because of fears of contagion.

Unlike many diseases, HIV has a significant stigma attached to it. In a study of 33 families with HIV-infected parents, researchers found that at least one member of all the families either feared or experienced stigma, while two-thirds of the families had been victims of prejudice or discrimination, including complete avoidance, ostracism, and verbal insults. Such HIV-related stigma reduces parents' willingness to disclose their condition to their children and also limits children's opportunities for social support.

Families also suffer from more practical repercussions, such as the loss of child custody or a lack of guardianship planning. One study found that more than half of the children were not in their parents' custody at some time during the two-year study period. Another study found that slightly less than 30 percent of the unmarried parents had prepared legal documentation of a guardianship plan for their children. Both issues highlight the instability that many children of HIV-infected parents face.

Addressing the Concerns

Suggested recommendations to address these concerns include making better use of clinicians to support and guide HIV-infected parents in deciding whether, when, and how to disclose their infection to their children.

Researchers also suggested a need for effective interventions to reduce HIV-related stigma and support families dealing with its harmful effects. These include skill-building opportunities for families (through, for example, mock role-playing with HIV-positive individuals) and support groups for children of HIV-infected parents with the intent of allowing children to discuss their family situation in an accepting context.

INTERVIEW

Helping Kids Deal with an HIV-Infected Parent: The Need to Provide More Than Just Clinical Help Megan Beckett is a sociologist at RAND who has worked on a range of topics related to families and children, with an emphasis on how the family and broader social environment influence child outcomes. She and her colleagues examined how parental HIV infection affects children's living arrangements and parental displays of affection, as well as parenting processes unique to parents living with a chronic, potentially life-threatening disease, including disclosure of HIV status to children and guardianship planning. She is also a nationally recognized expert on out-of-school-time programs. She has a Ph.D. in sociology from the University of Michigan. The research you and your colleagues have done points to some implications for helping kids with HIV-infected parents. Much of our work focuses on the implications for clinicians about how they can support HIV-infected parents in being effective parents under extremely challenging conditions. In particular, clinicians are ideally suited to address misconceptions parents and other family members have about the transmission of HIV—misconceptions that could interfere with family interactions. But there is also a role for others to help kids in this situation, right? That's true. The focus on clinicians is on helping kids within the family environment, but children's well-being is also determined in many important ways by their experiences outside the family, such as while in school or participating in any out-of-school-time activities, like after-school programs. How so? The development of close relationships with peers or extrafamilial adults in such settings can counterbalance challenges these students may face at home with parents who find the task of effective parenting hard to do while coping with their illness. While this is obviously good, our research suggests that children sometimes encounter stigmatizing experiences in school and other settings outside the home. Because they are likely to fear such experiences, as a protective mechanism, children may isolate themselves from potential sources of social support. Given the potential value of such outside relationships, what can be done to leverage them as a counterbalance? The implication from our work is that schools, teachers, counselors, and principals must be educated about how HIV is transmitted to reduce their own fears and misconceptions about HIV. It also argues that such educators must be aware that students who are isolated from others may be defending themselves against stigma, which means providing educators with the skills to support such children. And, importantly, beyond this, such educators must be encouraged to foster a general school climate that does not encourage fear or stigmatize HIV-infected children or children with HIV-infected parents. This is particularly critical in communities where HIV is known to be present. And this is true beyond just the school environment, right? Yes, it's also true for the directors and front-line workers who work directly with children in after-school programs, summer programs, and community-based programs that serve youth. They also need to be educated about how HIV infection is and is not transmitted and on how to foster a climate that is welcoming and supportive of these vulnerable children. Such programs have the potential to support the healthy development of children who participate in them, but only if they provide a safe and nurturing environment to all participants.

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