• Conceptions of Agency and Constraint for HIV-Positive Patients and Healthcare Workers to Support Long-Term Engagement With Antiretroviral Therapy Care in Khayelitsha, South Africa

      Stern, E; Colvin, C; Gxabagxaba, N; Schutz, C; Burton, R; Meintjes, G (Taylor & Francis, 2017-03-01)
      In the context of the optimism around antiretroviral therapy (ART) as prevention of HIV/AIDS, addressing the barriers to long-term ART adherence is critical. This is particularly important given the tendency to individualise or use a blame discourse when exploring why HIV-infected patients "fail" to adequately adhere to ART, and not sufficiently exploring contextual reasons for poor adherence that may require varying solutions. This study took place at three clinics and one hospital in Khayelitsha, South Africa, to document the contextual factors that challenged ART adherence in this community. Interviews were conducted with 20 HIV-infected patients who had defaulted on their ART and were subsequently admitted to Khayelitsha hospital for clinical complications, and 9 ART service providers including doctors, nurses and HIV counsellors. Interviews assessed the reasons patients defaulted on ART and explored ways this could be prevented. Data from both groups were analysed collectively using thematic analysis. While the interviews revealed a landscape of environmental risks threatening adherence to ART, all patients managed to overcome the identified barriers at some point in their treatment phase, indicating the fluidity of patients' needs and decision making. Patients reported that distrustful relationships with service providers could inhibit their understanding of ART and/or interrupt their follow-up at clinics. Patients described their rationale and agency underlying non-adherence, such as testing their bodies' physical limits without ART medication. The study speaks to the need to appreciate contextual social and structural barriers related to ART adherence, and how these are negotiated differently by specific sub-groups, to support an appropriate response. It is imperative to not solely emphasise loss to follow-up but also assess patients' subjective trajectory of their ART journey, decision making and agency with adhering to ART, their relations with healthcare workers, and how these dynamics are intertwined with broader constraints in health systems.
    • Dissonance of Choice: Biomedical and Lived Perspectives on HIV Treatment-Taking

      Horter, S; Seeley, J; Bernays, S; Kerschberger, B; Lukhele, N; Wringe, A (Taylor & Francis, 2020-02-20)
      Treat-all recommends prompt treatment initiation for those diagnosed HIV positive, requiring adaptations to individuals' behavior and practice. Drawing on data from a longitudinal qualitative study in Eswatini, we examine the choice to initiate treatment when asymptomatic, the dissonance between the biomedical logic surrounding Treat-all and individuals' conceptions of treatment necessity, and the navigation over time of ongoing engagement with care. We reflect on the perspectives of healthcare workers, responsible for implementing Treat-all and holding a duty of care for their patients. We explore how the potentially differing needs and priorities of individuals and the public health agenda are navigated and reconciled. Rationalities regarding treatment-taking extend beyond the biomedical realm, requiring adjustments to sense of self and identity, and decision-making that is situated and socially embedded. Sense of choice and ownership for this process is important for individuals' engagement with treatment and care.
    • Distribution of advanced HIV disease from three high HIV prevalence settings in Sub-Saharan Africa: a secondary analysis data from three population-based cross-sectional surveys in Eshowe (South Africa), Ndhiwa (Kenya) and Chiradzulu (Malawi)

      Chihana, ML; Huerga, H; Van Cutsem, G; Ellman, T; Goemaere, E; Waniala, S; Masiku, C; Szumilin, E; Etard, JF; Maman, D; et al. (Taylor & Francis, 2019-11-04)
      Background: Despite substantial progress in antiretroviral therapy (ART) scale up, some people living with HIV (PLHIV) continue to present with advanced HIV disease, contributing to ongoing HIV-related morbidity and mortality. Objective: We aimed to quantify population-level estimates of advanced HIV from three high HIV prevalence settings in Sub-Saharan Africa. Methods: Three cross-sectional surveys were conducted in (Ndhiwa (Kenya): September–November 2012), (Chiradzulu (Malawi): February–May 2013) and (Eshowe (South Africa): July–October 2013). Eligible individuals 15–59 years old who consented were interviewed at home followed by rapid HIV test and CD4 count test if tested HIV-positive. Advanced HIV was defined as CD4 < 200 cells/µl. We used logistic regression to identify patient characteristics associated with advanced HIV. Results: Among 18,991 (39.2% male) individuals, 4113 (21.7%) tested HIV-positive; 385/3957 (9.7% (95% Confidence Interval [CI]: 8.8–10.7)) had advanced HIV, ranging from 7.8% (95%CI 6.4–9.5) Chiradzulu (Malawi) to 11.8% (95%CI 9.8–14.2) Ndhiwa (Kenya). The proportion of PLHIV with advanced disease was higher among men 15.3% (95% CI 13.2–17.5) than women 7.5% (95%CI 6.6–8.6) p < 0.001. Overall, 62.7% of all individuals with advanced HIV were aware of their HIV status and 40.3% were currently on ART. Overall, 65.6% of individuals not on ART had not previously been diagnosed with HIV, while only 29.6% of those on ART had been on ART for ≥6 months. Individuals with advanced HIV disease were more likely to be men (adjusted Odds Ratio [aOR]; 2.1 (95%CI 1.7–2.6), and more likely not to be on ART (aOR; 1.7 (95%CI 1.3–2.1). Conclusion: In our study, about 1 in 10 PLHIV had advanced HIV with nearly 40% of them unaware of their HIV status. However, a substantial proportion of patients with advanced HIV were established on ART. Our findings suggest the need for a dual focus on alternative testing strategies to identify PLHIV earlier as well as improving ART retention.
    • Exploring HIV risk perception and behaviour in the context of antiretroviral treatment: results from a township household survey.

      Boulle, A; Hilderbrand, K; Menten, J; Coetzee, D; Ford, N; Matthys, F; Boelaert, M; Van der Stuyft, P; School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa. andrew.boulle@uct.ac.za (Taylor & Francis, 2008-08)
      The objective of this cross-sectional household survey was to assess factors influencing HIV risk perception, behaviour and intervention uptake in a community characterised by high HIV prevalence and availability of antiretroviral therapy (ART). The survey was conducted in Khayelitsha, South Africa and involved two-stage sampling with self-weighting clusters and random selection of households within clusters. One man and woman between 14 and 49 years old was interviewed in each household; 696 men and 879 women were interviewed for a response rate of 84% and 92% respectively. Ninety-three percent and 94% were sexually active with median age of sexual debut 15.3 and 16.5 years. Eighty-three percent and 82% reported a partner at the time of interview and 29% and 8% had additional partner(s). Forty-one percent and 33% reported condom use during the last sexual encounter. Thirty-seven percent of men not using condoms did not as they believed their partner to be faithful, whilst 27% of women did not as their partner refused. Twenty-eight percent and 53% had been tested for HIV. Having undergone HIV testing was not associated with condom usage, whilst current relationship status was the strongest association with condom usage for both men and women. In spite of a relatively high uptake of condoms and testing as well as ART availability, the HIV epidemic has continued unabated in Khayelitsha. Even greater coverage of preventive interventions is required, together with a national social and political environment that builds on the availability of both preventive and treatment services.
    • 'I saw it as a second chance': A qualitative exploration of experiences of treatment failure and regimen change among people living with HIV on second- and third-line antiretroviral therapy in Kenya, Malawi and Mozambique

      Burns, R; Borges, J; Blasco, P; Vandenbulcke, A; Mukui, I; Magalasi, D; Molfino, L; Manuel, R; Schramm, B; Wringe, A (Taylor & Francis, 2019-01-11)
      Increasing numbers of people living with HIV (PLHIV) in sub-Saharan Africa are experiencing failure of first-line antiretroviral therapy and transitioning onto second-line regimens. However, there is a dearth of research on their treatment experiences. We conducted in-depth interviews with 43 PLHIV on second- or third-line antiretroviral therapy and 15 HIV health workers in Kenya, Malawi and Mozambique to explore patients' and health workers' perspectives on these transitions. Interviews were audio-recorded, transcribed and translated into English. Data were coded inductively and analysed thematically. In all settings, experiences of treatment failure and associated episodes of ill-health disrupted daily social and economic activities, and recalled earlier fears of dying from HIV. Transitioning onto more effective regimens often represented a second (or third) chance to (re-)engage with HIV care, with patients prioritising their health over other aspects of their lives. However, many patients struggled to maintain these transformations, particularly when faced with persistent social challenges to pill-taking, alongside the burden of more complex regimens and an inability to mobilise sufficient resources to accommodate change. Efforts to identify treatment failure and support regimen change must account for these patients' unique illness and treatment histories, and interventions should incorporate tailored counselling and social and economic support. Abbreviations: ART: Antiretroviral therapy; HIV: Human immunodeficiency virus; IDI: In-depth interview; MSF: Médecins Sans Frontières; PLHIV: People living with HIV.
    • Reasons for unsatisfactory acceptance of antiretroviral treatment in the urban Kibera slum, Kenya.

      Unge, C; Johansson, A; Zachariah, R; Some, D; Van Engelgem, I; Ekstrom, A M; Department of Public Health Sciences, Karolinska Institutet, Stockholm, Sweden. christianunge@gmail.com (Taylor & Francis, 2008-02)
      The aim of this study was to explore why patients in the urban Kibera slum, Nairobi, Kenya, offered free antiretroviral treatment (ART) at the Médecins Sans Frontièrs (MSF) clinic, choose not to be treated despite signs of AIDS. Qualitative semi-structured interviews were conducted with 26 patients, 9 men and 17 women. Six main reasons emerged for not accepting ART: a) fear of taking medication on an empty stomach due to lack of food; b) fear that side-effects associated with ART would make one more ill; c) fear of disclosure and its possible negative repercussions; d) concern for continuity of treatment and care; e) conflicting information from religious leaders and community, and seeking alternative care (e.g. traditional medicine); f) illiteracy making patients unable to understand the information given by health workers.