Dr. Nancy Bedingfield will discuss SSHIFTB contributors’ paper:
Stillo J. Connecting the DOTS: Should we still be doing directly observed therapy? Human Organization. 2024.Jan 2; 83(1). 18 – 30; https://doi.org/10.1080/00187259.2023.2286173
There is also an optional companion commentary, Koch E & Versfeld A. Quiet complicity: Anthropologists and the medicalization of TB, Human Organization. 2014, 83(1), 3-6.
Abstract
It is well known that tuberculosis (TB) damages the physical body. Less known is the fact that the body is frequently damaged by one or more of the many side effects of TB drugs. What is even less recognized, including among doctors, is that this multi-layered damage often lasts long after a person is cured and may be irreversible. In this article I will discuss hearing loss and other sequelae (aftereffects of a disease or injury) caused by tuberculosis and its treatment and experienced by people in Romania. I argue that these harms change TB survivors’ sense of self, and that, because of how treatment is organized, medical providers, who deem them “cured” may not know about their sequelae or their struggles to return to their former lives. This article is based on long-term ethnographic fieldwork that took place in Romania mainly between 2009 and 2016 at several hospitals and clinics. This fieldwork included survey and interview methodologies, as well as participant observation, which entailed accompanying medical staff on rounds and living at a TB sanatorium for six months. The long duration of the fieldwork allowed me to see how a person experiences the entire trajectory of their illness, including its progression long after they leave the view of the medical system.
Original research by Alethe Peting de Vaulgrenant-de Cugnac
Introduction: Tuberculosis (TB) is an airborne bacterial disease, disproportionately affecting socially disadvantaged people. Despite global action, propagation of TB persists, suggesting the need to move beyond its medicalization by considering gender, social inequities and stigma, which would encompass the neglected attributes of Lalonde’s Health Field Concept. Additionally, the framing of TB nationally can provide insight into the problematization and the potential pitfalls of policy.
Theoretical Framework: The Bacci (2009) “What’s the Problem Represented To Be” (WPR) approach is used in this study enable the extraction of the framing gender, social inequities, and stigma within the national policy texts of Belarus and Romania in a systematic way.
Methodology: This study is a qualitative, discourse analysis of TB in Belarus and Romania. Data collection was done through government websites between May and June 2022. Policies chosen were from the last 10 years, and were analysed using WPR approach.
Results: Eight policies were analysed, three for Belarus, and five for Romania. Compelling differences were found in addressing gender. Social inequities and stigma were also identified to a great extent, with limited measures being found in both Romania and Belarus. Additionally, individualization of responsibility was profound in the policy analysis.
Discussion: Despite overall similar policy texts, Belarus and Romania have distinct epidemiological TB landscapes and approaches to TB control. These differences are striking, and enforce the necessity of holistic intervention in the two contexts as important relationships between TB are society are absent. Correspondingly, a model is put forth to illustrate the necessity of addressing gender, social inequities, and stigma within the national discourse is imperative for the eradication of TB.
This project contributed to Mariana’s Master in Global Health degree at Maastricht University, The Netherlands. Mariana plans to continue working in social sciences research and is contemplating a PhD.
Original research by Alethe Peting de Vaulgrenant-de Cugnac
Introduction: Tuberculosis (TB) is an airborne bacterial disease, disproportionately affecting socially disadvantaged people. Despite global action, propagation of TB persists, suggesting the need to move beyond its medicalization by considering gender, social inequities and stigma, which would encompass the neglected attributes of Lalonde’s Health Field Concept. Additionally, the framing of TB nationally can provide insight into the problematization and the potential pitfalls of policy.
Theoretical Framework: The Bacci (2009) “What’s the Problem Represented To Be” (WPR) approach is used in this study enable the extraction of the framing gender, social inequities, and stigma within the national policy texts of Belarus and Romania in a systematic way.
Methodology: This study is a qualitative, discourse analysis of TB in Belarus and Romania. Data collection was done through government websites between May and June 2022. Policies chosen were from the last 10 years, and were analysed using WPR approach.
Results: Eight policies were analysed, three for Belarus, and five for Romania. Compelling differences were found in addressing gender. Social inequities and stigma were also identified to a great extent, with limited measures being found in both Romania and Belarus. Additionally, individualization of responsibility was profound in the policy analysis.
Discussion: Despite overall similar policy texts, Belarus and Romania have distinct epidemiological TB landscapes and approaches to TB control. These differences are striking, and enforce the necessity of holistic intervention in the two contexts as important relationships between TB are society are absent. Correspondingly, a model is put forth to illustrate the necessity of addressing gender, social inequities, and stigma within the national discourse is imperative for the eradication of TB.
This project contributed to Mariana’s Master in Global Health degree at Maastricht University, The Netherlands. Mariana plans to continue working in social sciences research and is contemplating a PhD.
Dr. Jonathan Stillo is a medical anthropologist and an Assistant Professor who teaches Anthropology and Public Health at Wayne State University in Detroit, Michigan. His work and passion focuses on using anthropological and global health approaches to reduce human suffering in the world. He has received research grants from the US National Science Foundation, The US Department of State, Fulbright-Hays, and The Social Science Research Council, among others. Since 2006, Jonathan has been researching tuberculosis (TB) in Romania—including living at a Romanian TB sanatorium for several months and interviewing hundreds of patients over the course of more than five years living in Romania. His research focuses on the social, economic and structural aspects of TB, particularly antibiotic resistant varieties. Jonathan has served as an International Expert on the World Health Organization teams that conducted the 2014 review of Romania’s national TB program, as well as the TB program review in Republic of Moldova in 2013. In 2016, he was the lead author of an ECDC supported proposal for introducing integrated, community based support for people with TB in Romania. He is the elected Co-Chair of the TB Europe Coalition and a member of the Global TB Community Advisory Board. in 2019, he became the coordinator of the World Health Organization' European Office's working group on Patient Centered Tuberculosis Care.
Understanding Tuberculosis and its Control: Anthropological and ethnographic Approaches
Over the last two decades, attempts to control the problem of tuberculosis have become increasingly more complex, as countries adopt and adapt to evolving global TB strategies. Significant funding has also increased apace, diagnostic possibilities have evolved, and greater attention is being paid to developing broader health systems. Against this background, this book examines tuberculosis control through an anthropological lens. Drawing on ethnographic case studies from China, India, Nepal, South Africa, Romania, Brazil, Ghana and France, the volume considers: the relationship between global and national policies and their unintended effects; the emergence and impact of introducing new diagnostics; the reliance on and use of statistical numbers for representing tuberculosis, and the politics of this; the impact of the disease on health workers, as well as patients; the rise of drug-resistant forms; and issues of attempted control. Together, the examples showcase the value of an anthropological understanding to demonstrate the broader bio-political and social dimensions of tuberculosis and attempts to deal with it.
Union conference talk by Jonathan Stillo about human rights and my work with TB in Romania.
