Improving the Lives of Adolescents with HIV Through Honesty and Open Dialogue

No parent or caregiver should have to face telling a child that he or she is living with HIV. Yet it is a reality for millions of parents around the world. More than 2.6 million children who are living with HIV, many of whom contracted HIV from their mothers while in utero, during birth, or from breastfeeding.

As a pediatrician specializing in helping children and families living with HIV, I have seen the pain of caregivers who know that their child has to live with a lifelong illness—and must also brave the misunderstanding, stigma, and discrimination that goes with it. However, in my role as the director of Technical Leadership at the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), I am encouraged by programs around the world that provide psychological and social support to these children and adolescents.

One of my patients at Children’s National Health System recently learned of her HIV-positive status. JJ’s story, featured in the Washington Post, illustrates the importance of disclosing HIV-positive status to a child with support and patience. JJ is only 10 years old and has been living with HIV since birth. Until a few weeks ago, she didn’t know why she was taking so many medications or why she is often ill while her friends seemed to remain healthy. When JJ’s mother and I talked to her about HIV, we had to find a way to help her understand the virus and the importance of taking her medicine—while also letting her know that she is still a normal little girl.

JJ’s adoptive mother does not have HIV, yet in many families, parents or other family members are also living with HIV and are used to the world of secrecy around the three letters that define their medical condition. Families and caregivers will frequently come up with excuses to explain why their child has to take so many medications, go to frequent doctor appointments and take blood tests: "You have a blood disease;" "you need medicines to stay healthy;" "you have been ill as a baby and now we need to make sure you stay well.” Inevitably, the time comes when the child starts to ask questions. Unfortunately, there is no well-defined moment for when to tell the child about his or her HIV status. But most providers would agree that by the time a child reaches adolescence (age 12 or 13), she should know her status.

Some families and caregivers are comfortable telling children about their HIV status as young as 5 or 6 years of age. Most caregivers, however, wait for the child to get a bit older to prevent accidental disclosure in the community, at school, among peers, or within family—especially if not all family members are aware that one among them is HIV-infected. Sometimes, we initiate the partial disclosure of HIV diagnosis to the child to open up a more transparent dialogue about her health and treatment. We use analogies such as "good and bad bugs” or "invading soldiers in the body," with medicines being "ammunition” for good forces to battle for health.

Once the child understands why she is taking medication and that it is an important step to ensure that she remain healthy, she is more likely to adhere to treatment in the long-term. However, there remain many cultural barriers that prevent children living with HIV from getting the treatment they need. Across our programs, we work to ensure that children have both the medication and the psychological and social support they need to combat fear and stigma and lead healthy lives.

One such child is Given Mwanza, who is a teen mentor at EGPAF’s Tisamala club in Zambia.

“I have been living with HIV for my entire life, but it was only four years ago that I learned about my status,” Given recently shared. “Fortunately, I have a lifeline: the Tisamala Teen program started by EGPAF. Through this program, I was selected and trained to become a peer mentor, which gives me the opportunity to help give other HIV-positive teens hope."

Thanks to Tisamala, Given was able to find an outlet to discuss her own fears and challenges and learn from other teens who are dealing with similar issues.

No matter when or how we choose to tell a child she is living with HIV, our goal remains the same: to preserve self-esteem and self-respect in our children and prepare them to face the world proudly as adults. We want them to make good choices when disclosing their status to others; to have fulfilling, honest, and respectful personal relationships; and to become parents one day.

Honest and open dialogue about HIV, stigma, and personal choices is a crucial component of a successful long-term relationship between the HIV care provider and the person living with HIV, be it a child, adolescent, or adult. Protecting all people living with HIV from stigma and giving them the full and unconditional respect and support are no less important than giving them antiretroviral medications.

Natella Rakhmanina, M.D., is an infectious disease physician. She serves as the director of Technical Leadership at the Elizabeth Glaser Pediatric AIDS Foundation and the director of the Special Immunology Program, Division of Infectious Diseases, at Children’s National Health System in Washington, D.C.