History

In 2016–17, the research team conducted a formative qualitative study in and near Khayelitsha with persons 50+ living with HIV (OPLWH) and their health care providers. The findings from this study laid the foundation for the current proposal: (a) older persons tested late for HIV;³⁷ (b) women, in particular, were shocked to learn they were HIV positive because they did not see themselves as ‘at risk;’³⁷ (c) both testing and treatment for HIV and NCDs were siloed, such that respondents experienced barriers to integrated holistic care;^68,140,156 and (d) OPLWH had unique social and structural risks around pensions, food insecurity, and ART care.¹⁵⁷ In the qualitative interviews with OPLWH, HIV testing was a pivotal moment in their recent history. About half of the 23 OPLWH interviewed reported the year of their most recent HIV test without prompting. Provider-initiated testing was the primary pathway to testing for both older men and women. Men also reported testing when their partners who were positive asked them to. Providers reported no routine testing of older adults, that is, they did not consider older persons ‘at risk’ and referred them for testing only when advanced symptoms existed.³⁷

A separate study in rural South Africa (NIH-funded HIV40) also provided survey, focus group, and qualitative life-history data that shaped our research plan. In that study, focus group data with persons 40+ highlighted that older persons recognize the need to test for HIV, but have gendered motivations for and perceptions of testing. Common barriers to testing included fear of finding out one’s status, limited confidentiality, and partner non-disclosure.¹⁵⁸ When we analyzed survey data from this study, we found noteworthy gender differences in testing over the life course, including a significant drop-off in testing at older ages, particularly among women.³⁸ And yet, among those reporting ever-testing, over 80% reported testing in the last 0–3 years.³⁸ The life-history interviews highlight the importance of age, cohort, and period effects for risk behavior in this rural site.¹⁵⁹ Together, these two preliminary studies made clear the need to collect data over time on older persons’ social, sexual, and health risks and their relationship to HIV testing, thereby providing the impetus for developing the TRHC instrument.This project builds on and expands what can be learned from HIV40, HAALSI, and other HIV and aging studies in sub-Saharan Africa by offering new and more detailed, longitudinal risk and testing data from an urban context.