Few unmarried parents who are HIV-positive have made legally documented arrangements for who would care for their children if the parents die, according to a survey by the RAND Corporation issued today.
RAND, a non-profit research organization, analyzed interviews with 222 unmarried parents with a total of 391 children from a nationally representative sample of HIV-infected adults. Of those parents:
- 12 percent had not identified a guardian for their children.
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6 percent had identified a guardian but hadn't discussed their preference with the guardian.
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53 percent said the guardian had agreed to be the guardian.
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Only 28 percent had prepared legal documentation of their guardianship choice.
Studies have found that children who lose a parent to HIV/AIDS have higher rates of depression, risky sexual behaviors and other emotional and behavioral problems, making them vulnerable.
If parents have guardianship arrangements solidly in place -- through a will or standby guardianship -- they could help ease the trauma their children would suffer when losing a parent, because a guardianship plan can reduce the chances that children would be separated from their siblings or spend long periods of time in foster care.
"Ideally, we hope our findings will make physicians, especially pediatricians treating children who have HIV-positive parents, more aware of the guardianship issue, and more likely to talk to parents about the importance of making formal arrangements," said lead author Burton O. Cowgill. Cowgill is a researcher at the UCLA/RAND Center for Adolescent Health Promotion and a Ph.D candidate in the Department of Health Services in the School of Public Health at UCLA.
"All parents – not just parents with HIV or other, chronic illnesses – should consider a guardianship plan," Cowgill said. "By identifying who you want to be the guardian, you reduce the possibility of your children ending up with someone you don't want them to be with."
The RAND Health study, "Guardianship Planning Among HIV-Infected Parents in the United States," appears in the February issue of the journal Pediatrics. It was funded by the National Institute of Child Health and Human Development and the U.S. Centers for Disease Control and Prevention.
"I think parents often assume that if anything happens to them, then grandma, an uncle, or a close friend who spends a lot of time with their children will become the guardian, but the legal system doesn't always function the way parents assume it will," said Dr. Mark A. Schuster, senior author of the study and director of health promotion and disease prevention at RAND.
"Parents in two-parent families don't always consider that something could happen to both parents, and then the child can get caught in a tug-of-war among surviving family members," said Schuster, who is also professor of pediatrics and public health at UCLA's Mattel Children's Hospital.
One study of cancer patients who were single parents found that the children of 40 percent of them eventually became wards of people who the deceased parents would have opposed.
HIV-infected parents were most likely to have formalized guardianship arrangements if they were in poor health or were living with no other adults. The study also found that the age of the child had no impact on whether guardianship plans were more fully developed.
Among parents who identified a guardian, 36 percent listed a grandparent, followed by another relative (34 percent), the other biological parent (17 percent), a friend (7 percent), a spouse/partner who was not the biological parent (2 percent), an unrelated adoptive or foster parent (1 percent), and "other" (3 percent). Fathers were less likely than mothers to choose non-relatives.
The study used two waves of data from January 1996 to April 1997 and follow-up interviews from December 1996 through June 1997. The study drew on data collected for the HIV Cost and Services Utilization Study, a landmark study conducted by RAND.
Although the data are a decade old, Cowgill said the study is still relevant for several reasons, including the fact that it was drawn from a national probability sample of mothers and fathers, giving a more comprehensive picture. Past studies have been based on regional data, or were race- or gender-specific.
Also, the use of highly active antiretroviral therapy -- which allows HIV-positive people to live longer with HIV-- has become more common in the years since the data were collected. Since the study found that healthier parents were more likely to have no formal guardianship arrangements, it is likely that even fewer HIV-positive parents are making formal arrangements today.
Schuster said there were several reasons why HIV-positive parents might fail to make sure a legal guardianship was in place. Parents may have assumed that relatives or friends would step in and no one else would challenge the arrangements.
Parents also may fail to make formal guardianship arrangements because of distrust of the legal system, depression, fear that they can't afford a lawyer and not being aware of free or reduced fee legal services, or fear of being judged negatively due to their HIV-positive status. There's also the very human tendency to procrastinate and reluctance to face one's own mortality, Schuster said.
Other authors of the study are Marc N. Elliott, Megan K. Beckett, and Annie J. Zhou, all of RAND; Rosalie Corona, of Virginia Commonwealth University; and Michelle T. Parra, of the Los Angeles Department of Health Services.
RAND Health, a division of the RAND Corporation, is the nation's largest independent health policy research program, with a broad research portfolio that focuses on quality, costs and delivery, among other topics.
The RAND Corporation is a nonprofit research organization providing objective analysis and effective solutions that address the challenges facing the public and private sectors around the world. To sign up for RAND e-mail alerts: http://www.rand.org/publications/email.html
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PEDIATRICS