Dataset for Caregiver Burden Article - Grandmothers' subjective stress of caregiving using the Zarit Buden Interview (ZBI)

The HIV/AIDS pandemic cut a swathe through young-adult and middle-aged South African generations, leaving behind millions of orphans and vulnerable children. Traditional gendered demands, and high mortality rates among older men, mean that caregiving for those children frequently falls to grandmothers, producing significant strain, increased vulnerability to psychpathology, but also expression of resilience. Extant literature has not measured subjective caregiver burden or distinguished between predictors of that burden quantitatively. We used a mixed methods design to collect quantitative and qualitative data from 57 urban-dwelling grandmothers. Each headed an HIV-affected household and served as primary caregiver for at least one grandchild. Regression modeling identified number of children for whom the participant served as primary caregiver; number of chronically ill household residents; and whether or not the participant received caregiving assistance as predictors of subjective caregiver burden. Open-ended questions revealed trends consistent with that model and suggested that, despite severe resource shortages, grandmothers displayed resilience in, and expressed pride at, fulfilling caregiving responsibilities. This is the first study to measure, using a standardized, well-validated instrument, the subjective burden of caregiving experienced by South African grandmothers heading HIV-affected households. The descriptive data we present support formulation of grounded hypotheses (e.g., how dynamics of household composition affect caregiving experiences; how such experiences might be a source of pride and resilience) that might guide future research.