Characterizing the Dual Burden of Stigma in People With Multidrug-Resistant Tuberculosis and HIV co-infection in South Africa: A mixed-methods, Prospective Cohort Study.
Karl Reis, Xuan Lu, Boitumelo Seepamore, Allison Wolf, Mbali Zulu, Hlengiwe Nyilana, Kevin Guzman, Ken Cheung, Gerald Friedland, Jacquelyn Yushkov, Rubeshan Perumal, Kogieleum Naidoo, Nesri Padayatchi, Amrita Daftary, Jennifer Zelnick, Max R O'Donnell, K Rivet Amico
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Abstract
Background: Addressing stigma is a key priority of the WHO End TB Strategy. However, gaps persist in our understanding of stigma associated with multidrug/rifampin-resistant tuberculosis (MDR/RR-TB), particularly in people living with HIV.
Methods: Adults with MDR/RR-TB and HIV on antiretroviral therapy and starting bedaquiline-containing regimens in KwaZulu-Natal, South Africa, were prospectively enrolled. TB- and HIV-related stigma were evaluated using adapted questionnaires, with exploratory factor analysis (EFA) to develop stigma scales. In-depth interviews were recorded in isiZulu, translated into English, coded, and thematically analyzed.
Results: From 2018 to 2020, 113 participants completed stigma questionnaires. EFA identified 6-item MDR/RR-TB and HIV stigma scales capturing internal and external stigma (Cronbach alpha 0.86 and 0.83). Stigma related to MDR/RR-TB and HIV was reported by 49.6% (56/113) and 33.7% (37/113) of participants, respectively. In adjusted models, female sex, unemployment, and hospitalization were associated with HIV-related stigma, and alcohol use was associated with TB-related stigma. HIV- and MDR/RR-TB-related external stigma were associated with mortality (hazards ratio 3.14 [95% CI: 0.91 to 10.78]), 3.75 (95% CI: 1.14 to 12.35). Qualitative analysis revealed that TB stigma stemmed from fear of infection and led to social isolation and economic loss. HIV stigma was driven by mistrust. Participants demonstrated greater resilience against HIV-related stigma compared with MDR/RR-TB stigma.
Conclusion: Among MDR/RR-TB and people living with HIV in South Africa, MDR/RR-TB-related stigma exceeded HIV-related stigma and external stigma was associated with increased mortality. Strategic efforts to address stigma, particularly for key and vulnerable populations, is critical to advancing human rights and improving treatment outcomes.
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