Dynamic needs and challenges of people with drug-resistant tuberculosis and HIV in South Africa: a qualitative study

Amrita Daftary, Shinjini Mondal, Jennifer Zelnick, Gerald Friedland, Boitumelo Seepamore, Resha Boodhram, K Rivet Amico, Nesri Padayatchi, Max R O'Donnell, Amrita Daftary, Shinjini Mondal, Jennifer Zelnick, Gerald Friedland, Boitumelo Seepamore, Resha Boodhram, K Rivet Amico, Nesri Padayatchi, Max R O'Donnell

Abstract

Background: There is little evidence of patient acceptability for drug-resistant tuberculosis (DRTB) care in the context of new treatment regimens and HIV co-infection. We aim to describe experiences of DRTB-HIV care among patients in KwaZulu-Natal province, South Africa.

Methods: In this qualitative study using Bury's framework for chronic illness, we conducted 13 focus groups at a tertiary hospital with 55 patients co-infected with DRTB and HIV (28 women, 27 men) who were receiving new bedaquiline-based treatment for DRTB, concurrent with antiretroviral therapy. Eligible patients were consenting adults (aged >18 years) with confirmed DRTB and HIV who were enrolled into the PRAXIS study within 2 weeks of initiating bedaquiline-based treatment for DRTB. Participants were recruited from the PRAXIS cohort to participate in a focus group based on their time in DRTB treatment: early (2-6 weeks after treatment initiation), middle (2-6 months after discharge or treatment initiation if never hospitalised), and late (>6 months after treatment initiation). Focus groups were carried out in isiZulu language, audio recorded, and translated to English within 4 weeks. Participants were asked about their experiences of DRTB and HIV care and treatment, and qualitative data were coded and thematically analysed.

Findings: From March, 2017, to June, 2018, distinctive patient challenges were identified at four critical stages of DRTB care: diagnosis, marked by centralised hospitalisation, renunciation from routine life, systemic stigmatisation and, for patients with longstanding HIV, renewed destabilisation; treatment initiation, marked by side-effects, isolation, and social disconnectedness; discharge, marked by brief respite and resurgent therapeutic and social disruption; and continuity, marked by deepening socioeconomic challenges despite clinical recovery. The periods of diagnosis and discharge into the community were particularly difficult. Treatment information and agency in decision making was a persistent gap. Sources of stigmatisation shifted with movement between the hospital and community. Resilience was built by connecting to peers, self-isolating, financial and material security, and a focus on recovery.

Interpretation: People with DRTB and HIV undergo disruptive, life-altering experiences. The lack of information, agency, and social protections in DRTB care and treatment causes wider-reaching challenges for patients compared with HIV. Decentralised, community, peer-support, and differentiated care models for DRTB might be ameliorative and help to maximise the promise of new regimens.

Funding: US National Institutes of Health.

Translation: For the isiZulu translation of the abstract see Supplementary Materials section.

Conflict of interest statement

Declaration of interests

We declare no competing interests.

Copyright © 2021 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY-NC-ND 4.0 license. Published by Elsevier Ltd.. All rights reserved.

Figures

Figure 1:. Focus group topic guide
Figure 1:. Focus group topic guide
DRTB= drug-resistant tuberculosis.
Figure 2:. Chronology of disruptions during DRTB…
Figure 2:. Chronology of disruptions during DRTB treatment in people with DRTB and HIV, and recommendations for amelioration
DRTB=drug-resistant tuberculosis.

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Source: PubMed

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