Understanding Treatment Refusal Among Adults Presenting for HIV-Testing in Soweto, South Africa: A Qualitative Study

Abstract

HIV treatment initiatives have focused on increasing access to antiretroviral therapy (ART). There is growing evidence, however, that treatment availability alone is insufficient to stop the epidemic. In South Africa, only one third of individuals living with HIV are actually on treatment. Treatment refusal has been identified as a phenomenon among people who are asymptomatic, however, factors driving refusal remain poorly understood. We interviewed 50 purposively sampled participants who presented for voluntary counseling and testing in Soweto to elicit a broad range of detailed perspectives on ART refusal. We then integrated our core findings into an explanatory framework. Participants described feeling “too healthy” to start treatment, despite often having a diagnosis of AIDS. This subjective view of wellness was framed within the context of treatment being reserved for the sick. Taking ART could also lead to unintended disclosure and social isolation. These data provide a novel explanatory model of treatment refusal, recognizing perceived risks and social costs incurred when disclosing one’s status through treatment initiation. Our findings suggest that improving engagement in care for people living with HIV in South Africa will require optimizing social integration and connectivity for those who test positive.

Understanding HIV-infected patients’ experiences with PEPFAR-associated transitions at a Centre of Excellence in KwaZulu Natal, South Africa: a qualitative study

“…Transfer clinics, while providing free care within the community, were often seen as overcrowded and unable to provide adequate support. This finding is consistent with our recent research focused on understanding why ART-eligible patients may choose not to engage in care, and the need for psychosocial support for individuals who may perceive too many barriers to accessing treatment (Katz et al, 2014). …”

One in 4 HIV-Positive South Africans Awaiting ART Initiation Report Condomless Sex With a Serodiscordant Partner

“…This approach is consistent with mathematical models demonstrating that the elimination of HIV in South Africa can be achieved through universal testing together with immediate ART initiation. 14 Although several logistic, economic, and psychosocial challenges are inherent in this approach, 8,29 given the number of serodiscordant partners identified in our study as being potentially exposed to HIV, and recognizing that our untreated PLWH participants were linked to clinical care, our results suggest that not offering immediate ART upon diagnosis entails a missed opportunity for reducing incident HIV in South Africa.…”

“…1 Despite this achievement, a proportion of South Africans who test HIV-positive and are successfully linked to care are not promptly initiated on ART, due to structural factors such as CD4 cell count-based treatment guidelines, 2 insufficient clinic staffing and resources, 3,4 and requirements to complete protracted HIV literacy training prior to commencing treatment; 5,6 as well as social factors such as treatment refusal, 7 which may stem from underlying feelings of wellness 8,9 or depression. 10 Patients falling into this treatment gap are unable to capitalize on the primary and secondary prevention benefits associated with ART's rapid viral suppression, 11–15 and continued sexual risk behavior among this subgroup thus poses considerable individual and public health consequences for the South African HIV epidemic.…”

A meta-intervention to increase completion of an HIV-prevention intervention: Results from a randomized controlled trial in the state of Florida.

“…Given limited time and interest, clients of health facilities can accept or refuse to take part in an HIV-prevention counseling session (Albarracín et al, 2008; Grady, Kegeles, Lund, Wolk & Farbe, 1983; Katz et al, 2015; Noguchi et al, 2007; Minder, Müller, Gillmann, Beck & Stuck, 2002; Wilson & Albarracín, 2015). Moreover, some of the audiences most vulnerable to HIV are the least likely to complete HIV-prevention interventions (Earl et al, 2009; Liu et al, 2014; Noguchi et al, 2007; Yancey, Ortega & Kumanyika, 2006; Wilson & Albarracín, 2015).…”