Telling a child she is HIV-positive is difficult in many ways.
Last month, I was in Kigali, Rwanda, to give the keynote address at the 6th International Conference for Exchange and Research on HIV/AIDS. I spoke about telling children their HIV-positive status and the difficulties this disclosure presents. In the last decade, pediatric HIV/AIDS treatment and care programs have been widely scaled-up throughout Africa. Many more children have been placed on lifesaving antiretroviral medications, but there has been little focus on the psychosocial issues that children and families face, especially when it comes to disclosure.
In the early years of the HIV epidemic in the United States, I cared for HIV-positive children and their families as a nurse practioner. Recent research coming out of several African countries, 1-3 including Uganda, the Democratic Republic of Congo, and South Africa, reflect my own experiences.
For example, one of the things that struck me about the research was the finding that few caregivers have told their children about their diagnosis because they fear that children are unable to fully understand their illness, will face stigma and isolation from peers, and may tell others about their “family secret.” Paradoxically, the studies show that most caregivers feel that between the ages 7- 11 a child can start taking responsibility for her own antiretroviral medications, but they believe that age 14 is the ideal age for a child to learn her HIV status. In my opinion, this discrepancy is one that can lead to more anxiety and guilt for caregivers and less support from other family members, who are important not only for the child’s emotional well-being but also in medication administration.
Delaying disclosure can confuse children and leave them with feelings of isolation, mistrust, and anger once their diagnosis is known. Many children report feeling relieved once they are told their diagnosis, and most express the wish to have been told earlier. To ease the difficulty of disclosure to children, it is essential to view disclosure as an ongoing process rather than a one-time event. A child’s age and developmental status, as well as a variety of family factors, should drive the process.
Recently, when I was in Rwanda, I learned about the country’s thoughtful and forward-looking approach to pediatric HIV care and the issue of disclosure to children. The Rwandan pediatric guidelines advise disclosing a child’s HIV-positive status when the child is eight years-old using a visual tool with cartoon drawings, which has been developed specifically for children. I also had the opportunity to visit the Kibagabaga Hospital with several IntraHealth staff members. We toured the pediatric palliative care center in this hospital, which is the first of its kind in the country. Dr. Christian Ntizimira, the hospital’s medical director, explained that at Kibagabaga the palliative care services are integrated to include all pediatric chronic illnesses, so that HIV-positive children are not stigmatized. It was encouraging to learn that in-patient hospital and out-patient clinic services include an impressive array of psychosocial services, ranging from play therapy for children; home-based care services; and support groups for children, adolescents, and their caregivers. Rwanda’s pediatric palliative care program at Kibagabaga Hospital will undoubtedly improve the quality of life for HIV-positive children and their families and serve as a model to others. I will be interested to see, as the program progresses, any research findings on how Rwandan children actually experience learning their HIV-positive status.
1. Corneli A. , L. Vaz, J. Dulyx, S. Omba, S. Rennie, F. Behets. 2009. The role of disclosure in relation to assent to participate in HIV-related research among HIV-infected youth: a formative study. J Int AIDS Soc 12: 17.
2. Vaz L.M.E., E. Eng, S. Maman, T. Tshikandu, F. Behets. 2010. Telling children they have HIV: lessons learned from findings of a qualitative study in sub-Saharan Africa. AIDS Patient Care and STDs 24(4): 247-256.