title: 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.
authors.affiliation: Division of Women's Health, Brigham and Women's Hospital, 1620 Tremont Street, 3rd Floor BWH, Boston, MA, 02120, USA, ikatz2@partners.org.
authors.forename: Ingrid T
authors.initials: IT
authors.lastname: Katz
authors.forename: Janan
authors.initials: J
authors.lastname: Dietrich
authors.forename: Gugu
authors.initials: G
authors.lastname: Tshabalala
authors.forename: Thandekile
authors.initials: T
authors.lastname: Essien
authors.forename: Kathryn
authors.initials: K
authors.lastname: Rough
authors.forename: Alexi A
authors.initials: AA
authors.lastname: Wright
authors.forename: David R
authors.initials: DR
authors.lastname: Bangsberg
authors.forename: Glenda E
authors.initials: GE
authors.lastname: Gray
authors.forename: Norma C
authors.initials: NC
authors.lastname: Ware
mesh_terms: D000328:Adult; D058345:Asymptomatic Infections / Q000523:psychology; D001294:Attitude to Health; D030881:Disclosure; D005260:Female; D015658:HIV Infections / Q000175:diagnosis / Q000188:drug therapy* / Q000523:psychology; D006801:Humans; D008297:Male; D036301:Qualitative Research; D012934:Social Isolation / Q000523:psychology; D057545:Social Stigma; D012944:Social Support; D013019:South Africa; D016312:Treatment Refusal / Q000523:psychology*