Explaining HIV to Children

Chris, a young boy living in Zambia, and his mother. In Zambia, EGPAF has provided more than 1 million women with prevention of mother-to-child transmission (PMTCT) services.

James Pursey/EGPAF

Disclosing an HIV-positive status is never easy, but the challenge becomes even greater when a parent or caregiver must disclose an HIV-positive child’s status to that child.  A recent survey conducted by the AIDS Training Information and Counseling Centre (ATICC) based at the Walter Sisulu University in Lusikisiki, South Africa explored some of the challenges associated with providing antiretroviral (ARV) medications to children and found that one of the largest impediments is that parents or caregivers are not comfortable telling a child that she is HIV-positive.

There are several reasons for this reluctance, as Dr. Susan Gibbons, a clinical psychologist and senior technical advisor at the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) explains.
“One of the major problems is stigma. Parents or caregivers may be afraid to reveal their own HIV status, let alone disclose their child’s HIV status.” Another challenge is access to appropriate information and educational materials. Caregivers must have accurate and easy-to-understand information about administering ARVs to a child and learn new skills to communicate the importance of treatment to children effectively.

“Health workers can provide training and facilitate the treatment process,” said Dr. Gibbons, “But caregivers and parents have the most significant role to play in emphasizing the importance of treatment and supporting the child to take his medication.” Without an understanding of why he or she is taking medication, it is very difficult to maintain a treatment regimen. Conversely, children who know their status and understand the crucial role ARVs play in maintaining their health are more adherent to treatment throughout their lives.

There are several tools available, such as counseling picture cards that can explain HIV/AIDS to children along with the importance of treatment. EGPAF’s new program, the Mbuya DAISEY disclosure project in Lusaka, Zambia, provides caregivers with a five-session workshop to teach them ways to talk to a child about being HIV-positive. DAISEY stands for “Developmentally Appropriate Information Support and Empowerment for Youth.”

“Disclosure is a process, not a one-time event,” explains Dr. Gibbons.  “As a child grows, she will have different questions about what it means to be HIV-positive and how it will impact her family, friends,and herself. The younger a child is when she learns she is HIV-positive, the easier it will be for her to cope in the long-term.”

The World Health Organization (WHO) recommends that all HIV-positive children of school age should know their status. As a child gets older, knowledge about his status is even more essential, especially as he enters adolescence. EGPAF has several programs, such as Ariel Camps and our Tisamala project, that offer mentorship, group counseling, and community building for HIV-positive youth.
As EGPAF and the rest of the global health community make progress in preventing HIV transmission, we must continue to provide support for people living with the virus, including children.

To learn more about EGPAF’s work to eliminate pediatric HIV worldwide, click here.

Johanna Harvey is Senior Communications Officer for the Foundation, based in Washington, D.C.