Pathways to Cure: care-seeking experiences and perceptions of health and illness of participants enrolled in a clinical trial for hepatitis C treatment in Ho Chi Minh City, Vietnam
Jennifer Ilo Van Nuil, Medical Anthropologist, Oxford University Clinical Research Unit (OUCRU)
Wednesday, 19 June 2019, 11am to 12.30pm
Ethox and the Wellcome Centre for Ethics and Humanities are based at the Big Data Institute, University of Oxford, Li Ka Shing Centre for Health Information and Discovery, Old Road Campus, Oxford OX3 7FZ. The talk will be held in seminar room 0.
Direct acting antiviral therapy is a highly effective treatment for hepatitis C virus (HCV), yet access remains limited on a global scale. Over the past few years, researchers have started to implement clinical trials in LMICs to test the medication in different contexts and for different durations, thereby providing access to treatment for a segment of the population.
In this talk, I discuss the design and preliminary findings of an ethnographic study taking place alongside an HCV treatment trial at Hospital for Tropical Diseases in Ho Chi Minh City, Vietnam. In this study, we examine the care and treatment experiences of a subset of the trial participants, as well as their perceptions of health and illness related to HCV. The study started in March 2019 and recruitment, enrollment and data collection are ongoing. We plan to enroll 18-21 trial participants into the study. We will conduct two in-depth interviews with the participants at the study site (i.e. the first on Day 0, the second at the last study visit) and one mobile interview in their community. We will use participant observation at the study site and at the outpatient HCV clinic throughout the trial to engage with both participants and healthcare staff.
This study builds on research that I conducted in Rwanda from 2016-2018 where we collected in-depth interviews with 11 study participants over the course of an HCV treatment study. I will discuss four interconnected themes that we identified during data analysis as a background for the Vietnam study: 1) understanding of diagnosis and use of traditional medicine, 2) access and financial barriers to care-seeking, 3) complex social networks, 4) proactivity in care-seeking.
Finally, I explore preliminary findings from the Vietnam study including community discourse surrounding hepatitis C, individual care seeking experiences, and issues related to participation in clinical trials. To conclude, I discuss the wider implications of integrating ethnographic research in clinical trials, on both local and global levels.