A Family Affair: HIV-Affected Children

You don't have to be HIV-infected to be HIV-affected. Project ARK focuses on a forgotten group.

By Jessica Scully

Few things are more devastating than testing positive for HIV. But people who have the virus aren't the only ones who suffer from it. For the children of HIV-positive parents, living with the knowledge that someone they depend on has the disease can be a terrifying and isolating experience.

For 18-year-old Kennimarie, coping with her father's HIV positive status has forced her to grow up quickly.

"I'm not a little kid, I'm not an adult. But, I have to be an adult sometimes, making sure he's going where he's supposed to go, taking his medicine,'' she said. "When he's doing fine, there's no stress. When he doesn't feel well, it's like you don't know what to do because there's not a lot you can do, and everyone is in a helpless situation."

Kennimarie isn't alone in dealing with an HIV-positive parent.

HIV-infection rates are increasing among women and people of color and with them come an increasing number of children. According to a report published in the July issue of the American Journal of Public Health, 60 percent of HIV-infected women and 18 percent of HIV-infected men have one or more children younger than 18.

That works out to about 120,000 children in America with at least one HIV-positive parent, according to the report. Some of those children may also be HIV-positive, but others were born before a parent became positive or, thanks to advances in health care, didn't contract the disease in the womb or during childbirth.

Because many of the children are not suffering from the disease itself, their struggles can be overlooked. "I think if there were a forgotten group or a group that could use more attention, it would be HIV-affected children,'' said Kim Donica, director Project AIDS/HIV Resources for Kids (ARK), a St. Louis-based organization helping women, children and families affected by HIV.

These children are lucky not to have the virus, but they aren't free from HIV. Substance abuse, poverty, inadequate food and substandard housing are other problems faced by families affected by HIV, said Tracey Bush-Parker, associate director of services at Los Angeles Family AIDS Network (LAFAN).

Sixty-five to 70 percent of LAFAN's clients speak Spanish, and some of the families are immigrants without documentation who don't qualify for certain government assistance programs. "It's hard to impact someone medically when really, HIV is not necessarily the most critical problem in their life,'' Bush-Parker said.

An additional burden on the HIV-affected family is the residual stigma from the early days where the virus was seen as a disease of primarily gay, white men. This stigma can increase the sense of isolation that children of an HIV-positive parent often feel.

Having a parent with HIV is different from having a parent sick from any other illness. Compared to cancer, "the stigma of HIV is far greater, and puts a greater burden on the individual and the family," said Patricia Woody, a coordinator of family programs at LAFAN.

The children must not only cope with a parent who could die from a misunderstood, stigmatizing disease, but many can't talk to their friends or even other family members about their parent. While the children of people suffering from less-stigmatized diseases are pitied, the children of people with HIV are sometimes treated with suspicion or rejected.

Due to this stigma, an HIV-positive parent faces a tough choice in deciding when to tell a child the truth. Experts say that few children younger than 8 years old are ready for the news. For children who live with their parents, that can mean years of watching a parent take a series of pills, have good days and bad days or be hospitalized for a period of time without explanation.

When the child finally does learn the reason, it is a serious blow. According to Donica of Project ARK "Often kids are in a situation where there are some people they can tell and (some people they) can't tell. These kids often feel in a position of isolation, after hearing this news that is very frightening to them.''

For Kennimarie, the experience was a traumatic one.

"I was upset, sad and mad. Almost every emotion there can possibly be, except for happiness, runs through you. I'm the only teenager I know right now who has a parent who's HIV-positive," she said.

Both Project ARK and LAFAN seek to help their clients by providing support groups for the children of HIV-positive parents. The children share their experiences in a supportive environment and help each other cope with the challenges of their daily lives.

It may not change the burden that children of an HIV-positive parent face, but it can help them feel a little less isolated and afraid in the process.

Jessica Scully is a San Francisco-based reporter and freelance writer. If you have questions or comments, she can be reached at jjessgirl@msn.com

Copyright © 2000-2024 savvyHEALTH.com. All rights reserved.