This is the first study to utilise a phenomenological approach to understand the lived-experiences and identify the support-needs of people living with AMR infections and chronic colonisation. This is unique amongst the existing literature, which has focused on shared experiences around the time of diagnosis, rather than individual narratives over a significant time post-diagnosis.
The main aim and novelty of this study is that it focuses directly on understanding the support needs of individuals living with AMR, as well as describing the impact on their daily lives inside and outside of healthcare settings. As well as exploring this with participants through explicit questions, we were able to interpret their broader support needs through interpretive analysis of their whole interviews. While different support-needs were identified within each subtheme, these were all inextricably linked.
Participants expressed frustration at the inaccessibility of clinicians, alongside a perceived lack of knowledge and understanding from non-infection specialist clinicians regarding AMR, which lead them to undertake their own research. Similar perceptions have been reported elsewhere16,20,21,22 which suggests an ongoing need for increased knowledge amongst healthcare professionals and a more holistic, supportive, approach to consultations with these patients—not just from a medical perspective, but increasingly a psychosocial perspective. This will help alleviate feelings of isolation, loneliness, stigma, and having to fight alone as a lack of understanding and support from health professionals may exacerbate this12,22. Self-advocacy in other settings has been shown to be beneficial to patient experience26,27, but it can also be perceived as counterproductive; creating tensions and barriers by clinicians27,28 and patients alike26,29. Without improved understanding of AMR and its impact on people, this could potentially create a vicious cycle for those living with AMR.
Ultimately, participants wanted to gain a better understanding of their situation from a health and treatment perspective and wanted more support and advice on how to remain socially active and maintain relationships. Participants raised concerns regarding the quality and accuracy of information and advice currently accessible through websites and online support groups but found these provided much needed emotional support and advice on daily living, which has been reported in previous studies into the lived experiences of those with AMR20,21,22. Other studies into the use of social media platforms by the lay public for infection and antibiotic advice has revealed poor knowledge, attitudes and behaviours with regards to the use of antibiotics30, which is concerning given the rise of misinformation during the COVID pandemic that included unsolicited advice recommending self-medication with various antimicrobials31. Therefore, research into the quality of advice and information available through online platforms is urgently needed.
Research on other chronic, less-common, and less-understood conditions suggests that professional information and support can alleviate peoples’ feelings of anxiety and uncertainty around their health and alleviates feelings of guilt with regards to their relationships32,33. Similarly, our participants also wanted to understand the science relating to their specific infections, AMR, and how to prevent its transmission. There is an unmet need for professional and reliable, yet understandable, information about AMR, infections, preventing the transmission of pathogens, and how to live with AMR. The role of family and friends in understanding and supporting people living with AMR came through strongly in our analysis and has been similarly reported by King et al.22 as playing a central role in how people came to terms with being colonised with resistant organisms, thus it will be imperative for information to be sharable with family and friends, to improve their knowledge of these topics. Generally, health literacy amongst the general public is low and creates barriers to people understanding their diagnoses and treatment options34,35. AMR is a complex and abstract concept that the general public struggle to understand36,37 and is more prevalent amongst people from lower socioeconomic and ethnic minority groups36, thus information will need to be clear and understandable for lay-persons and those with lower health literacy from a diverse range of backgrounds. Co-creation of resources with diverse groups of patients, particularly expert patients such as those involved in our research, and the public will be vital for creating accessible, understandable and reliable resources.
The literature highlights how there is often an overreliance on specialist clinicians to discuss AMR, colonisation and infection, resulting in delays and conflicting information22. Therefore, these information resources could be used to train healthcare professionals about the experiences of people living with AMR, and in turn can be used by health professionals to support patients at the point of initial diagnosis or first encounter with a patient.
In the UK, when an individual is identified with certain AMR organisms, they should receive communication from a healthcare provider to inform them of this10,38. It is not known to what extent this is done in the UK and whether people identified with AMR organisms are signposted to relevant information and support, but the narratives of our participants suggest this is rare. Wiklund et al.20,21 described how individuals living in Sweden identified with ESBL organisms received letters with brief information about ESBL and their carrier status but contained no follow-on information or support, whereas Hereng et al.12 amended their MDR and XDR information to provide to those outside of hospital settings in France. Sharing good practice internationally would be welcomed and more research in Britain specifically is warranted to measure compliance with this national guidance and medicolegal obligations to adequately inform patients of their diagnoses, but our initial recommendation is that these notifications should provide and signpost people to reliable sources of information and support from the outset.
Finally, participants highlighted the value of having spaces to meet others living with AMR, receive emotional support and have a safe space to tell their stories, and even advocate for others. Formal support groups, provided by charities, were highlighted as being the most useful to our participants. As AMR becomes an increasing problem in society there will likely be a need for national and local support groups for people living with AMR. Professionally run support groups are successful and can be a lifeline for people living with conditions that are uncommon or poorly understood by wider society32. Support interventions can range from more relationally focused (buddy schemes, group meetings and forums) to more educational-informational driven as research from other long-term conditions shows how needs and priorities vary.
Although the focus of our study primarily was to identify the support-needs of individuals living with AMR, it would be remiss of us not to discuss their lived-experiences, through which these support-needs were identified. The participants involved in this study are undertaking a journey to make sense of their situations and comprehend their future, often alone and in isolation. Although we developed three major themes with eleven subthemes, these were all interlinked with each other through our participants’ accounts, which reemphasises the concept of undertaking a journey and developing from someone with little knowledge and understanding, through to expert patient and advocate. By using IPA, we employed a data-driven interpretive approach yet identified key commonalities with reviews by Currie et al.7, who performed an inductive approach with the literature, and Rump et al.8, who mapped study findings to Nussbaum’s capability framework17. Our research reconfirms previously reported lived experiences of people living with AMR and suggests, interestingly, that little has changed in the past 5-years even in the context of the post COVID-19 pandemic world.
Like Currie et al.7 we identified a continuum of embodied and emotional responses with those experiencing recurrent UTI experiencing heightened physical responses, whereas those with chronic carriage or prior infections reporting more emotional and psychological impacts. Our participants also described experiences that aligned with negative experiences of healthcare professionals in relation to their infection and needing to adapt their life to their new situation. These were influenced by their individual social contexts, particularly in relation to the general lack of understanding amongst wider society.
As highlighted in the background of this report, Rump et al.8 observed how AMR impacted on a wide range of capabilities originally postulated by Nussbaum17. Our study also observed an impact on the same capabilities of bodily health (capability 2); emotion (capability 5); practical reason (capability 6); affiliation (capability 7), being able to laugh, play, and to enjoy recreational activity (capability 9); and having control over one’s environments (capability 10). Additionally, our research identified impact on Existential threat (capability 1)—some participants lived in fear of death from infections and an inability to live a full life; Bodily integrity (capability 3)—participants described a loss of control over their own bodies, as if they had been invaded; and Senses, imagination and thought (capability 4)—they felt their pain was unnecessary and avoidable, but they also reported not being able to freely express their thoughts and feelings.
On face-value the number of participants may be considered a limitation. An IPA approach, however, eschews large numbers of participants and is more concerned with the individual’s unique experience and journey, rather than broad generalisations across a population, or with the notion of achieving saturation23. The length of the interviews is a key strength of this research, lasting 60–90 min each, compared to 10–60 min in other research into the experiences of those affected by AMR12,20,21,22. This allowed in-depth analysis and exploration of each individual’s account which we have presented in the supplementary materials (Supplementary Table S1)—since justice could not be done to these narratives within the main manuscript, and we encourage readers to read these for a greater understanding of the lived-experiences and coping-strategies of individuals living with AMR. It would be remiss, however, to ignore the benefits that a larger sample size could bring, especially given the powerful and deep accounts provided by the participants. Although saturation, representativeness, and generalisability are not the goals of IPA methodology, more participants would undoubtedly reveal a broader range of specific support requirements for people living with AMR. Additionally, larger participant numbers, ideally access from a broader range of sources, could provide a more diverse study population that may identify lived experiences and support requirements that might transfer more widely to the community of interest.
The main limitation of this study is that most of the participants identified as white (n = 7/9) and female (n = 7/9) with urinary tract infections (7/9). This will have influenced the major themes and subthemes developed through the analysis of interview transcripts, and further highlights the need for readers to consider the individual accounts presented in Supplementary Table S1. The large proportion of white females in this study may be partly explained by this demographic being more likely to access the kinds of support groups that were used to facilitate recruitment39,40. Women are also more likely than men to develop a UTI41,42, including recurrent and chronic UTI, which are predominantly caused by enteric Gram-negative organisms that can develop and acquire multiple drug-resistance mechanisms; this is seen in our study population. Future researchers should develop explicit strategies to access more diverse samples and could focus specifically on those who have had single episodes of AMR infections and otherwise healthy individuals with no infections but who have been identified as chronically colonised, who have been excluded from previous studies12. It is likely the lived-experiences and support-needs of these populations will differ from those presented in this research.