Barriers to and facilitators of paediatric adherence to antiretroviral therapy (ART) amongst children younger than five years in rural South Africa

In the context of the limited availability of antiretroviral drugs for young children and the emergence of drug resistance, excellent adherence is required to achieve an undetectable viral load (VL) and an elevated CD4 count. However, characteristics of the caregiver, child, regimen, clinic and social context affect clinic attendance and medication-taking, both of which constitute adherent behaviour. In this thesis, through the lens of Bronfenbrenner’s Ecological Systems Theory (EST), I explored the barriers to and facilitators of ART administration to children younger than five years in a rural area of South Africa with a high prevalence of HIV. The research was conducted in two phases. Phase 1 included nine interviews and three focus groups to determine how doctors, nurses, counsellors, traditional healers and caregivers understood the barriers and facilitators to ART adherence among children residing in rural South Africa. The data were transcribed, translated into English from isiZulu where necessary, and coded using ATLAS.ti version 7. At the level of the microsystem, the unpalatability of medication and large volumes of medication were problematic for young children. The characteristics of the caregivers that contribute to poor adherence were absent mothers, grandmothers as caregivers and denial of HIV amongst fathers. At the level of the mesosystem, language barriers and inconsistent attendance of caregivers to monthly clinic visits were factors affecting adherence. At the level of the exosystem, the nature of adherence counselling and training of counsellors were the most problematic features influencing adherence. At the level of the macrosystem, the effects of food insecurity and the controversy surrounding the use of traditional medicines were most salient. I concluded Phase 1 of the thesis by recommending increased supervision and regular training amongst lay adherence counsellors, as well as regular monitoring of the persons attending the clinic on the child’s behalf. Stellenbosch University https://scholar.sun.ac.za iv In Phase 2, I purposively recruited 33 caregiver-child dyads from the Hlabisa HIV Treatment and Care Programme database. Children were divided into three groups based on their VL at the time of recruitment. Children with a VL ≥ 400cps/ml were grouped as unsuppressed (n=11); children with a VL ≤400 cps/ml were grouped as suppressed (n=12); and children with no VL data were grouped as newly-initiated (n=10). I observed caregiverchild dyads at their monthly adherence counselling visit to document information they received from adherence counsellors. I then visited caregiver-child dyads at their households to document, by means of video-recording, how treatment was administered to the child. Observational notes and video-recordings were entered into ATLAS.ti v 7 and analysed thematically. On average counselling sessions lasted 8.1 minutes (range 2 - 18). Little behaviour change counselling was conducted, even in instances where children were doing poorly on treatment. Thematic video analysis indicated five key areas of caregiver practices that may contribute to poor outcomes. These were context-related, medication-related, caregiverrelated, and child-related factors and interactions between caregiver and child. Although the majority of children in this sample took their medicine successfully, the way in which medications were prepared and administered by their caregivers was problematic. I concluded Phase 2 of the thesis by recommending that with emerging drug resistance, efforts are needed to carefully monitor caregiver knowledge of treatment administration by counsellors during monthly clinic visits.National Research Foundatio