Good citizens, perfect patients, and family reputation: Stigma and prolonged isolation in people with drug-resistant tuberculosis in Vietnam

Lisa Redwood; Greg J Fox; Thu Anh Nguyen; Sarah Bernarys; Paul Mason; Van Anh Vu; Viet Nhung Nguyen; Ellen M H Mitchell

doi:10.1371/journal.pgph.0000681

Good citizens, perfect patients, and family reputation: Stigma and prolonged isolation in people with drug-resistant tuberculosis in Vietnam

PLOS Glob Public Health. 2022 Jun 22;2(6):e0000681. doi: 10.1371/journal.pgph.0000681. eCollection 2022.

Authors

Lisa Redwood^{1

2}, Greg J Fox^{1

2}, Thu Anh Nguyen^{1

2}, Sarah Bernarys³, Paul Mason^{4

5}, Van Anh Vu², Viet Nhung Nguyen⁶, Ellen M H Mitchell⁷

Affiliations

¹ The Faculty of Medicine and Health, The University of Sydney, Central Clinical School, The University of Sydney, Camperdown, New South Wales, Australia.
² The Woolcock Institute of Medical Research, Ba Dinh District, Hanoi, Vietnam.
³ The University of Sydney, School of Public Health, The University of Sydney, Camperdown, New South Wales, Australia.
⁴ Taronga Conservation Society Australia, Sydney, Australia.
⁵ The University of Sydney, School of Education and Social Work, The University of Sydney, Camperdown New South Wales, Australia.
⁶ National Tuberculosis Program, Hanoi, Vietnam.
⁷ Department of Public Health, Tropical Infectious Disease Group, Institute for Tropical Medicine, Antwerp, Belgium.

Abstract

Stigma and isolation are common in people with tuberculosis (TB). Social isolation contributes to reduced health outcomes and TB treatment adherence. Stigma and the drivers of isolation in people with Drug-Resistant (DR)-TB may include modifiable advice and practices of family and Health Care Workers (HCW). This study aimed to understand the drivers of isolation and stigma from the perspective of people with DR-TB in Vietnam. A greater understanding of stigma and isolation is important to identify and balance patients' needs and disease transmission risk. In-depth interviews were conducted with 12 people with DR-TB and seven HCWs who care for people with DR-TB in two provinces in Vietnam. Interviews were audio-recorded, transcribed verbatim and translated to English. Data collection and analysis were conducted simultaneously. The data were then analysed using a thematic framework approach. Stigma and extended isolation were common experiences among people with DR-TB. To mitigate stigma, people with DR-TB used the local term 'lao lực' to describe their condition to others which is believed to be a less infectious and less stigmatising type of TB. This study identified that although HCW informed people with DR-TB of when they were no longer infectious and isolation was no longer required, their infection control advice was not always consistent. Despite knowing they were no longer infectious, most people with DR-TB continued to self-isolate to minimise the perceived repercussions of societal stigma, to protect their 'thể diện' (honour, prestige, reputation), and eliminate all risk of transmitting DR-TB to their family. This study identified three interconnected drivers of self-isolation in Vietnam, including fear of infecting others, fear of stigmatization, and to protect family reputation. TB control programmes need to better understand the social aspects of DR-TB to enable them to better support patients. Educating HCW to provide evidence-based infection control advice is vital.

Copyright: © 2022 Redwood et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Grants and funding

This study was funded by the Faculty of Medicine and Health at the University of Sydney, Australia to GF. GF was funded by an Australian National Health and Medical Research Council (Canberra, ACT, Australia) Career Development Fellowship (GNT1148372). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.