AMR survivors? Chronic living with antimicrobial resistant infections

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 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 experiences 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 the resistant infections impacted not only the physical health but also the mental health of the sufferers and their caregivers, causing major disruptions to their social and work lives. 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 and whether people with the diverse AMR experience really self-identify as ‘survivors’ of a biosocial group.