There are an estimated 150 000 HIV-infected children in Uganda, and studies indicate less than a third of children under the age of 15 know they are infected.
Many caregivers are afraid to tell children about their status and often make up elaborate stories to explain to the child why he or she needs to take medication.
A research team designed and implemented a study to determine the effectiveness of an intervention to improve caregiver disclosure to children living with HIV.
The intervention, called Dialogue Interventions to Support Communication & Openness-Kids (Disco), included a series of three group meetings for caregivers and one-on-one counselling sessions for the caregiver, the 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.
In the group meetings, caregivers learn developmentally appropriate ways to talk with their child about difficult subjects, from the death of a grandmother to the fact that the child has HIV.
The Disco team collected data to study the effectiveness of this intervention in improving pediatric disclosure (the primary outcome), as well as improving children’s adherence to treatment; in improving the children’s understanding of their HIV status; and in relieving the caregiver’s anxiety and depression. The team also will be analysing the data to see whether the intervention is cost-effective and scalable.
Despite the rapid expansion of HIV services for children in Uganda, very few health providers receive formal training in how to support disclosure of an HIV diagnosis to an infected child. And even though the World Health Organisation (WHO) recommends children learn their HIV status by the age of 12, there are no tested models for supporting caregivers and HIV-infected children in Sub-Saharan Africa through the process of disclosure.