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

Coetzee, Bronwynè Jo’sean (2015-12)

Thesis (PhD)--Stellenbosch University, 2015

Thesis

ENGLISH ABSTRACT : 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. 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 caregiver-child 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, caregiver-related, 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.

AFRIKAANSE OPSOMMING : Binne die konteks van die beperkte beskikbaarheid van antiretrovirale behandeling vir jong kinders en die verskynsel van weerstand teen middele is uitstekende navolging nodig om by ’n onwaarneembare virale lading (VL) en ’n verhoogde CD4-telling uit te kom. Die kenmerke van die versorger, kind, regimen, kliniek en die sosiale konteks affekteer egter kliniekbywoning en die neem van medikasie, wat albei navolgingsmaatstawwe is. Ek het in hierdie studie die struikelblokke en fasiliteerders tot ARV-behandeling van kinders jonger as vyf jaar in die landelike streke van Suid-Afrika verken aan die hand van Bronfenbrenner se Ekologiese Stelselteorie (EST). Die navorsing is in twee fases gedoen. Fase 1 het nege onderhoude en drie fokusgroepbesprekings ingesluit ten einde vas te stel hoe dokters, verpleegsters, beraders, tradisionele genesers en versorgers die struikelblokke en fasiliteerders tot ARV-navolging sien. Die data is getranskribeer en in isiZulu vertaal waar nodig, en gekodeer met behulp van ATLAS.ti weergawe 7. Op die vlak van die mikrosisteem was die onsmaaklikheid van medikasie en die groot hoeveelhede medikasie vir jong kinders problematies. Die kenmerke van versorgers wat bydra tot swak navolging is afwesige moeders, oumas as versorgers en ontkenning van MIV onder vaders. Op die vlak van die mesosisteem is taalhindernisse en ongereelde kliniekbywoning geidentifiseer as faktore wat navolging beïnvloed. Op die vlak van die eksosisteem is die aard van navolgingsberading en die opleiding van beraders uitgelig as die mees problematiese faktore wat navolging beïnvloed. Op die vlak van die makrosisteem is die gevolge van voedselonsekerheid en die kontroversie rondom die gebruik van tradisionele behandelings geopenbaar as die mees opvallend. Fase 1 van die tesis sluit af met ’n aanbeveling dat daar meer toesig en gereelde opleiding vir die leke navolgingsberaders moet wees, sowel as gereelde monitering van die persone wat die kliniek bywoon namens die kind. Gedurende Fase 2 het ek 33 versorger-kind-pare doelgerig gewerf uit die Hlabisa MIV Behandelings- en Sorgprogram se databasis. Kinders is verdeel in drie groepe gebaseer op hulle VL ten tyde van werwing. Kinders met ’n VL ≥ 400kps/ml is gegroepeer as nie-onderdruk (n=11); kinders met ’n VL ≤400kps/ml is gegroepeer as onderdruk (n=12); en kinders met geen VL data is gegroepeer as nuut-geinisieer (n=10). Ek het die versorger-kind-pare waargeneem tydens hulle maandelikse navolgingsberadingsbesoek om te dokumenteer watter inligting hulle van navolgingsberaders ontvang. Ek het daarna die versorger-kind-pare in hulle huishoudings besoek om met behulp van video-opname te dokumenteer hoe behandeling toegedien is. Waarnemingsnotas en video-opnames is in ATLAS.ti v 7 ingevoer en tematies geanaliseer. Beradingsessies het gemiddeld 8.1 minute (range 2 - 18) geduur. Min berading oor gedragsverandering het plaasgevind, selfs in gevalle waar kinders sleg gevaar het op die behandeling. Die tematiese video-analise toon vyf sleutelareas binne versorgerpraktyke wat moontlik bydra tot swak uitkomste. Hierdie areas is die konteksverwante-, medikasieverwante-, versorgerverwante- en kindverwante faktore en die interaksies tussen versorger en kind. Alhoewel die meerderheid van kinders in hierdie monster hulle medikasie suksesvol geneem het, was die manier waarop medikasies deur versorgers voorberei en toegedien is problematies. Fase 2 sluit af met die aanbeveling dat beraders in die lig van stygende medikasieweerstand moeite moet doen om versorgers se kennis van die toediening van behandeling te monitor.

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