Understanding Specific Contexts of Antiretroviral Therapy Adherence in Rural South Africa: A Thematic Analysis of Digital Stories from a Community with High HIV Prevalence

Abstract

Near-perfect adherence to antiretroviral therapy (ART) is required to achieve the best possible prevention and treatment outcomes. Yet, there have been particular concerns about the challenges of adherence among patients living in resource-limited settings in sub-Saharan Africa. The primary objective of this study was to explore adherence in a low-resourced, rural community of high HIV prevalence in South Africa and to identify specific individual and structural factors that can either challenge or support adherence in this context. We applied digital stories as a qualitative research tool to gain insights into personal contexts of HIV and ART adherence. Through an inductive thematic analysis of twenty story texts, soundtracks and drawings, we explored experiences, understandings, and contexts of the participants and identified potential barriers and facilitators for those on lifelong treatment. We found that many of the stories reflected a growing confidence in the effectiveness of ART, which should be viewed as a key facilitator to successful adherence since this attitude can promote disclosure and boost access to social support. Nevertheless, stories also highlighted the complexity of the issues that individuals and households face as they deal with HIV and ART in this setting and it is clear that an overburdened local healthcare system has often struggled to meet the demands of a rapidly expanding epidemic and to provide the necessary medical and emotional support. Our analysis suggests several opportunities for further research and the design of novel health interventions to support optimal adherence. Firstly, future health promotion campaigns should encourage individuals to test together, or at least accompany each other for testing, to encourage social support from the outset. Additionally, home-based testing and ART club interventions might be recommended to make it easier for individuals to adhere to their treatment regimens and to provide a sense of support and solidarity.

Patient-reported barriers and facilitators to antiretroviral adherence in sub-Saharan Africa

“…Eighteen studies (20.7%) used focus group discussions (FDGs) [19,23–25,28,50,53,61,68,73,74,76,77,82,94,98,167,169], 16 used both IDIs and FDGs (18.4%) [18,30,31,38,44,52,64,72,75,79,83,86,92,93,99,170], one used free attitude interviews (FAIs) and FGDs (1.1%) [80], one used group sessions without more detail [168], one used IDIs and life history and illness narratives [48] and one used digital stories [91]. …”

Monitoring progress towards the first UNAIDS target: understanding the impact of people living with HIV who re‐test during HIV‐testing campaigns in rural Mozambique

“…Several studies have shown a strong association between disclosure, social support and adherence . PLWHIV who experienced positive social support were more likely to disclose their HIV‐status and link and retain in care, while those who perceived stigma or feared disclosing, presented lower levels of access to care . Despite this, very few studies have documented the magnitude of non‐disclosure to health providers and to our knowledge, no studies have measured non‐disclosure to the lay counsellor at the moment of HIV‐testing.…”

“…However, the need for understanding the main reasons for non‐disclosure has increased in recent years as a greater proportion of the population is tested for HIV. Identifying barriers could reduce the magnitude of the problem and potentially improve adherence to ART and care due to the close relationship between disclosure and adherence . The main reasons for non‐disclosure at various levels (partners, family, friends, healthcare providers or even employers) are fear of discrimination or rejection , stigma or previous negative experiences disclosing to a confident .…”

The lived experiences of rural women diagnosed with the human immunodeficiency virus in the antenatal period

“…Growing confidence in the effectiveness of ART, the better side effect profile of current ART regimens and the positive benefits of ART, such as having an HIV uninfected baby and prolonging her life to fulfil mothering responsibilities, are reported facilitators of ART for pregnant women (Black et al, 2014 ; Elwell, 2016 ; Katirayi et al, 2016 ; Treffry-Goatley et al, 2016 ).…”

“…Key issues that affect pregnant women in rural areas include distances to clinics, frequency of clinic visits and culture-specific influences (Gourlay et al, 2013 ). Treffry-Goatley et al ( 2016 ) allude to the complexity of the issues that individuals and families affected by HIV in a rural South African community face. These may require novel approaches to support optimal adherence to ART.…”