Communication between caregivers and children perinatally infected with HIV about the disease and medication without disclosure: Qualitative data from Nyangabgwe Hospital, Botswana

Abstract

Children usually receive antiretroviral treatment for a certain duration before the reasons for the treatment are fully discussed with them. Eventually, adherence to the treatment becomes a challenge. This study explore the communication between caregivers and HIV-infected children about medications and their illness in the absence of disclosure of the HIV status. A qualitative study was conducted with 20 caregivers of children whose HIV status had not been disclosed to. Caregivers were purposely selected from the Infectious Disease Control Centre of Nyangabgwe Hospital, Gaborone, Botswana. The caregivers used the analogy of the immune system as an army and the viral load as bad guys to make the child understand their illness and the importance of good adherence to medication. Communication with children about their medication and illness using “bad guys” and “body soldiers” occurred on a regular basis. Caregivers were aware of the importance of preparing the child for disclosure and all stated that disclosure will happen only when the child is well prepared. Caregivers approached disclosure as a process, and prepared for disclosure by providing children with partial factual information about their illness and medication. The study findings support the view that caregiver readiness to disclose is a key determinant of disclosure. HCWs should provide support to caregivers to facilitate disclosure to HIV-infected children. Further explorative studies should be conducted with children in this and similar settings in Botswana to assess their understanding of their illness and medication.