The impact of caregiver mortality on treatment outcomes for 2021 in children and adolescents living with HIV at Empilweni clinic in Johannesburg – an observational cohort study

Abstract

Introduction: Despite improvements in HIV management, children and adolescents living with HIV remain vulnerable. Caregiver mortality in a large paediatric and adolescent HIV clinic in Johannesburg are described and the effect of the death of a caregiver on children and adolescents’ HIV treatment outcomes was investigated. Methods: In this secondary retrospective analysis on longitudinal data we included children or adolescents attending clinic between 01 January to 31 December 2021. Data were divided into those with documented primary caregiver mortality and those without (ever documented including before enrolment into care). Viral load, treatment regimens, CD4, and anthropometry were analysed for the year 2021. Results: Caregiver vital status was recorded in 1171 (93%) of the 1260 patients attending clinic in 2021. In 115 children or adolescents (10%) we found a documented death of caregiver(s). Amongst 1120 mothers, 100 (9%) had died; of 460 fathers, 18 (4%) had died and one (1%) of 100 other caregivers had died. A large number (n=54 [45%]) of the 119 deaths occurred between 2016 and 2021 and 66 (69%) after the child/adolescent’s enrolment in the clinic. In 2021, stunting and wasting were seen significantly more in the participants who had a caregiver death than those who had not (p=0.01 and 0.02 respectively). No significant difference was seen between the groups for the viral load, treatment regimens and CD4 counts. Conclusion: Caregiver death was incompletely captured in the clinic database, suggesting that clinicians were unaware of the death of a caregiver. Children experiencing the death of a caregiver were more likely to be malnourished. We propose increased attention on wellbeing of caregivers in paediatric HIV services.