Understanding the lived-experience and support-needs of people living with antimicrobial resistance in the UK: an interpretative phenomenological analysis

Abstract

AbstractBackgroundIn the UK nearly 54,000 infections were caused by serious resistant bacteria in 2022. While the impact on patients during hospital admissions are known, there is little research on the long-term impact on those identified as having infections from or being colonised with resistant bacteria. Moreover, there is lacking evidence of the support-needs of these individuals and how this support should be provided by clinicians and healthcare providers. This research aimed to answer the question: “What are the key elements of experience and support needs of people living with AMR in the United Kingdom?”MethodsIn-depth semi-structured interviews were undertaken with nine people who had been living with resistant infections or colonisation for 12-months or longer, to explore their lived-experiences and support-needs. Interpretive Phenomenological Analysis was used to study the accounts and illustrate individuals’ experiences and particular support-needs.ResultsParticipants experienced marginalisation and isolation but also empowerment; described across three major themes, titled: (1) I live in fear and stigma: The long-term impact of AMR; (2) I am battling on my own: A journey toward self-advocacy; and (3) I like to share my story: The role of AMR communities. All participants perceived a lack of knowledge, information, and support from clinicians; difficulties accessing reliable and understandable information; and lack of understanding from family and friends. Charities and online groups provided support with coping with their situation and improving mental health and wellbeing.ConclusionsUnderstandable and relatable information regarding the science of AMR, transmission, prevention, and living with AMR needs to be provided by clinicians and healthcare services around the time of diagnosis. There is also an urgent need for professional and reliable information to be available outside of healthcare services, particularly through support groups provided by professionals. More research is needed into the information and advice currently provided, as well as a focus on the impact and support needs of those with asymptomatic colonisation.