Care for the Caregiver: How Caregiver Mortality Affects Treatment Outcomes—An Observational Cohort Study

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 is described and the effect of the death of a caregiver on children and adolescents' HIV treatment outcomes was investigated. We analysed retrospective longitudinal data and included children or adolescents attending the clinic between 01 January and 31 December 2021 divided into those with documented primary caregiver mortality and those without (ever documented). Viral load, treatment regimens, CD4, and anthropometry were analysed for 2021. Caregiver vital status was recorded in 1171 (93%) of the 1260 patients attending 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 more common in the participants with caregiver death than those without (χ2 = 4.98, 6.64, p = 0.01 and 0.03 respectively). No significant difference was seen between the groups for viral load, treatment regimens and CD4 counts. 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 increasing attention on the wellbeing of caregivers in paediatric HIV services.