AMR survivors? The social burden of antimicrobial resistant infections
AMR Survivors? The social burden of antimicrobial resistant infections
Trang Do and Andrea Whittaker
Abstract
Behind the statistics forecasting millions of deaths associated with antimicrobial resistance (AMR) is an even greater burden of morbidity leaving many people with long-term chronic illnesses and disability. Despite a growing recognition of the importance of inter-sectoral and inter-disciplinary knowledge in forming responses to address this global health threat, there remains a paucity of social science research to understand the social burdens of AMR. In this qualitative study we explore the experience of people living with chronic AMR infections, their interactions with health providers and therapeutic quests for care, and the effects upon their lives and that of their families and caregivers. Our analysis reveals that in the case of AMR infections, the chronic, disruptive, disabling, and in some cases potentially fatal conditions required ongoing management, repeated interventions, and bids to try new untested therapies. The resistant infections impacted not only the physical health but also mental health of the sufferers and their caregivers, causing major disruptions to their social and work lives. Their interactions with the biomedical community often proved frustrating. Most undertook arduous treatment regimes – of powerful antibiotics with debilitating side effects, combined a range of other complementary and alternate therapies, including travel to seek treatment overseas. Further, we question the notion of ‘AMR survivorship’ currently being promoted as part of a public education campaign by the World Health Organisation (WHO) and whether people with the diverse AMR experience really self-identify as ‘survivors’ of a biosocial group.
Bios
Trang Do has completed her Ph.D at Monash University in 2022. Her doctoral research explored how the lived experiences of breast cancer are shaped by social structural forces using community- and hospital-based ethnography in Central Vietnam. In her most recent research, Trang looked into the social burden of living with antimicrobial-resistant infections in Australia through interviews with survivors and their caregivers. She has recently started her postdoctoral position at the Murdoch Children's Research Institute in Melbourne where she is working on the implementation of genomics into clinical care across Victoria.
Andrea Whittaker, PhD, FASSA is Professor of Anthropology and former Australian Research Council Future Fellow at the School of Social Sciences, Monash University, Melbourne, Australia. She is a Research Leader in the Monash Centre to Impact AMR which funded the study on AMR survivors. Her other research in medical anthropology focuses on reproductive health.