“I am adhering to HIV treatment so that I can live to support her”: A qualitative study of upward intergenerational support in South Africa

Abstract

Background Intergenerational family care, which was upended by the HIV epidemic in sub-Saharan Africa (SSA), may return to a pre-HIV era arrangement as access to antiretroviral therapy (ART) expands and treated adults can once again provide support for older household members. Empirical research has demonstrated positive ‘spillover effects’ of ART uptake from treated adults to younger generations, yet much less is known about the nature and breadth of such effects to older generations. This study explores the role and lived experiences among adults who take up ART and those of an older generation with whom they live. Methods We conducted a qualitative study consisting of semi-structured interviews (n = 46) embedded in the Agincourt Health and Demographic Surveillance System (HDSS) in rural South Africa, between July and September 2022. We purposefully sampled two respondent categories: (i) young or middle-aged adults on ART (aged 18–59 years old); and (ii) older adults (aged ≥60 years old) who were affiliated with a young or middle-aged adult on ART. We used thematic content analysis to extract, code, and categorise relevant text by types of upward spillover effects from ART in younger adults to older adults. Quantitative data was extracted from the existing Agincourt HDSS database and matched to qualitative interview data based on Clinic link unique identifiers of study participants. Results Mean age was 41 years among young or middle-aged adults (n = 29) and 72 years among older adults (n = 17). Among younger adults, time on ART ranged from five months to more than 21 years. Both young or middle-aged adults on ART and older adults reported positive spillover effects for older adults across five main tiers: caregiving, financial support, physical and mental health, living arrangements and household relationships, and stigma and reputation. Spillover challenges included financial costs and caregiving responsibilities following ART initiation of young or middle-aged adults, although these additional caregiving responsibilities were generally not perceived as particularly burdensome. Conclusions ART is likely to benefit older adults in South Africa whose families are affected by HIV. This study identified a wide range of perceived spillover effects from ART in younger adults to older adults, including improvements to upward intergenerational support. These qualitative findings offer a guide to researchers, policymakers, and donors to capitalise on the broader societal effects of a large-scale health intervention to further support family structures and meet the needs of a growing older population.