By Loretta Waldman
Photos by Matthew Gillooley,
An estimated 150,000 HIV-infected children live in Uganda and less than a third of those children under the age of 15 know they are infected. For the past two years, Lisa Butler, an epidemiologist and behavioral scientist with research interests in child and adolescent HIV prevention, care and treatment, has been helping parents and caregivers find developmentally appropriate ways to tell their children they have HIV.
The study grew out of the fact that a greater number of HIV-infected children are thankfully surviving into adolescence, says Butler, principal investigator on the study. The children were reaching this developmental milestone not knowing they were infected and that was a problem, she says.
“Young people who know they are HIV-positive are better able to manage medications and make better health decisions,” says Butler. “When they aren’t told, they are more likely to act out when they do figure it out. The proposal was in response to something we all were seeing.”
Funded by a grant from the NIH, the study looked at the effectiveness of a problem-focused cognitive behavioral intervention aimed at improving caregiver disclosure to their HIV-positive children about their HIV-positive status [pediatric disclosure]. Called DISCO (Dialogue Interventions to Support Communication & Openness-Kids), the interventions included a series of three group meetings for caregivers and one-on-one counseling for the caregiver, child, and the caregiver-child pair. The meetings were held at the healthcare facility, ideally at the same time caregivers and children came to get their anti-retroviral medication. Butler worked with Rachel King, an academic coordinator at the University of California San Francisco Global Health Sciences. Other partners included Markere University and Johns Hopkins University Research Collaboration.
In the group meetings, caregivers learn developmentally appropriate ways to talk to their child about difficult subjects, from the death of a grandmother to the fact that the child has HIV. Telling a child they have HIV is difficult because it has to do with sex and death and the fact that their parent transmitted HIV to the child.
Many caregivers were afraid to tell their children and made up elaborate stories to explain to the child why he or she needed to take medication. By the end of the intervention, most caregivers in the intervention group had told their children that they were HIV infected.
“Many caregivers were grateful for the group sessions and were able to disclose to their child much more quickly,” explained King.
Adults liked being able to talk with people like themselves, added Butler. HIV remains highly stigmatized in Uganda, so many people feel as if they are the only ones infected. The intervention also had the added benefit of strengthening the relationship and communication between of the child and the caregiver, Butler said.
Butler and her team recruited six clinics in the Kampala area for the randomized trial and collected data at intervals of 6,12, 18 and 24 months. The intervention consisted of three group sessions with the child’s caregiver. At the second session, a video created for the purposes of the study was shown, Butler said.
“The video shows stories of caregivers and children talking about their experience of disclosure and is a critical part of the intervention,” she said.
Three hundred pairs of caregivers and children participated in the study; 150 of the pairs were in the intervention group. The DISCO team collected data to study the effectiveness of the intervention in improving pediatric disclosure (the primary outcome), as well as improving children’s adherence to treatment and in relieving the caregiver’s anxiety and depression.
The team will also be analyzing the data to see if the intervention is cost-effective and scalable. Earlier studies by Butler’s team and others have indicated that both caregivers and children have a high demand for healthcare provider-facilitated communication about HIV and disclosure to HIV-infected children. Despite the rapid expansion of HIV services to children in Uganda, very few healthcare providers receive formal training in how to support disclosure of an HIV diagnosis to an infected child. And even through the World Health organization recommends children learn their HIV status by age 12, there are no rigorously evaluated models for supporting caregivers and HIV-infected children in Sub-Saharan Africa through the process of disclosure.
Butler and her team would like to discuss with Uganda’s Ministry of Health what parts of the intervention can be scaled up at clinics. The ministry and healthcare providers have been struggling with this issue for over 20 years, Butler said.