Caregiver burden experienced by mothers of infants who are HIV exposed uninfected compared to infants HIV unexposed: A prospective cohort study in Worcester, South Africa

Abstract

In low-income, high HIV prevalence settings, caregiving for a young child who is HIV exposed and uninfected (HEU) can place additional demands on a mother living with HIV while she manages her own health and the well-being of her child. We compared caregiver burden associated with infants' healthcare needs, perceived by mothers of infants who were HEU and HIV-unexposed, uninfected (HUU). This nested sub-study of a prospective cohort study was conducted within the public primary healthcare setting in Western Cape, South Africa. Eligible mothers were enrolled antenatally with known HIV status and with a child confirmed HIV negative at age 12 months by 20 May 2025. The primary exposure was maternal-child HIV status, and primary outcome was caregiver burden according to the modified 12-item Zarit Caregiver Burden Scale questionnaire (ZCBS; range 0-48), measured by maternal interview at child's age 12 months. Logistic regression was used to compare caregiver burden (no-to-mild [ZCBS 0-10] vs moderate-to-high [ZCBS 11-48]), unadjusted and adjusted for maternal and household confounders. Among 187 mothers included (n = 91 of infants HEU, n = 96 of infants HUU), the median (interquartile range) ZCBS was 3(1-8); 22/91 (24.2%) mothers with HIV and 11/96 (11.5%) mothers without HIV perceived moderate-to-high caregiver burden (unadjusted odds ratio 2.46, 95% confidence interval (CI) = 1.12-5.43, P = .025). After adjusting for maternal age, income, number of cohabitating adults in the family and maternal depression, the adjusted odds ratio was 2.06, 95% CI = 0.85-4.98, P = .108. Living with HIV while caring for an infant who is HEU increases mothers' caregiving burden during the critical period of early motherhood.