From “Secret” to “Sensitive Issue”: Shifting Ideas About HIV Disclosure Among Middle-Aged and Older Rural South Africans in the Era of Antiretroviral Treatment

Abstract

Objective As HIV shifts from “death sentence” to “chronic condition,” disclosure of HIV status to intimate partners and family is a significant component of both prevention and treatment adherence. While disclosure is closely considered in many studies, few examine middle-aged and older persons’ (age 40+) perspectives or practices. We trace older rural South Africans’ views on HIV disclosure to their partners and family members in a high prevalence community over a period of extensive antiretroviral treatment (ART) rollout. Methods Community focus group discussions (FGD) conducted in 2013 and 2018 show shifts in older persons’ thinking about HIV disclosure. Findings Our FGD participants saw fewer negative consequences of disclosure in 2018 than in 2013, and highlighted positive outcomes including building trust (partners) as well as greater support for medication collection and adherence (family). Discussion Particularly as the epidemic ages in South Africa and globally, tracing changes in older persons’ views on disclosure is an important step in developing messaging that could enhance treatment as prevention and ART adherence.

Ageing with HIV: Medicine Optimisation Challenges and Support Needs for Older People Living with HIV: A Systematic Review

“…Living longer with HIV may lead to many older PLWH experiencing HIV-related loss of friends/family, these experiences may have reinforced adherence behaviour [ 37 ], although newly diagnosed older people may not be affected by this concern. The association between social support and adherence to ART has been reported in studies [ 80 , 84 ]. Older PLWH living with someone who knows their serostatus may increase their adherence rates due to increased social support (e.g., medicine reminders) [ 41 , 45 , 85 , 86 ].…”

“…Age-related facilitators were financial and moral support from families and access to social grants Limitations to this study include the small sample size and recruitment of participants who were already tested and linked to care, reducing the generalisability of the findings. Moreover, there may be other barriers or difficulties relating to not testing, late testing, and failing to attend care services that the study was unlikely to identify due to the sample population Schatz et al, 2022 (South Africa) [ 84 ] n = 161, PLWH > 40 years Community Focus group discussions Participants reported fewer negative consequences of discloser in 2018 compared to 2013. Participants reported positive outcomes such as building trust, and greater support with adherence and medication collection A limitation of the study is that participants in the 2013 focus group were different to those in 2018, which may have influenced the findings Contreras-Macias et al, 2020 (Spain) [ 73 ] n = 19 M = 69.4 years Outpatient Data were obtained from medical records, the electronic prescription programme, and the outpatient dispensing programme Medication Regimen Complexity Index (MRCI), The European AIDS Clinical Society (EACS) guideline of “Selected Top 10 Drug Classes To Avoid (Top-10-A) in elderly PLWHIV”, and the STOPP-Beers criteria Polypharmacy was reported in 84.2% (16) of participants and a Top-10-A potentially inappropriate prescription was evident in 47.4% (9) of participants.…”

“…Findings from the studies reviewed indicate that stigma is still prevalent among PLWH, and more so in older persons [ 27 , 34 , 37 , 41 , 43 , 48 , 50 , 55 , 64 , 66 , 71 , 78 , 84 , 86 , 92 – 95 ]. Several studies have reported that older PLWH experience more stigma than younger PLWH due to the HIV condition and age-related stigma [ 34 , 41 , 43 , 64 , 86 , 96 ].…”

Social Support for Improved ART Adherence and Retention in Care among Older People Living with HIV in Urban South Africa: A Complex Balance between Disclosure and Stigma

“…The experience of aging in South Africa is quite different from these contexts, however, as is the nature of the HIV epidemic (heterosexual and generalised). There is evidence from South Africa that HIV disclosure is a way that individuals secure social support from family [ 10 , 15 , 16 , 43 ]. Among our sample, disclosure facilitated social support from family.…”

“…These may be important ways to facilitate access to social support [ 11 , 41 , 42 ]. Resistance or hesitancy to disclose is often linked to and influenced by the risk of stigma or discrimination which may lead to reduced social support [ 15 , 16 , 43 ]. The interactions between stigma and disclosure and the role they play in the ability of older people to secure and benefit from social support in this context have not been explored to date and require additional research.…”