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.

KEYWORDS:

• Antimicrobial resistance
• antibiotics
• social burden
• AMR survivorship
• Australia

Introduction

In 2019, Antimicrobial resistance (AMR) became the leading cause of mortality globally with 4.95 million deaths associated with bacterial AMR (Murray et al., 2022). Within the next thirty years, there are forecasts that AMR deaths could reach 10 million by 2050 across the world (O'Neill, 2016) with a disproportionate burden experienced in low- and middle-income countries (Pokharel et al., 2019). Behind the mortality statistics is an even greater burden of morbidity leaving many people with long-term chronic illnesses and disability.

AMR is caused by changes in microbes’ responses to antimicrobial drugs (CDC, 2021; WHO, 2021). Although such changes to microbes are a naturally occurring process, increases in antimicrobial resistance are driven by a combination of exposure to antimicrobials (antibiotics and antifungals) and selective pressures favouring resistant microbes; the transfer of resistance traits in their DNA that can spread to other microbes they come into contact with; and the spread of those microbes and their resistant genes. It becomes problematic when such resistance occurs in disease-causing pathogens which cannot be treated with existing classes of drugs.

The global effort to tackle AMR largely involves communication strategies to promote general public awareness of AMR through education; the promotion of antimicrobial stewardship among human and animal health professionals; regulation of antimicrobials; the establishment of effective surveillance systems for early detection of AMR; prevention of infections; and global cooperation and research to develop new antimicrobials (Australian Government, 2022; Davis et al., 2020a; Davis et al., 2018; European Centre for Disease Prevention and Control, 2022; Mitchell et al., 2022; Newitt et al., 2019; Paphitou, 2013; WHO, 2016). Campaigns targeted at hospital and general practitioners and veterinarians aim to ensure the appropriate use of antimicrobials through limited and correct use. These campaigns only partially engage with the social burden of AMR infections, usually limited to sensational media stories featuring patients who have survived life-threatening infections or suffered highly visible amputations as moral lessons against indiscriminate use of antibiotics (Davis et al., 2020b; Davis et al., 2018). Likewise, within the policy field, emphasis is on the prevention of AMR and the needs of people struggling with the sequelae of AMR infections are largely neglected (see, for example, The Australian Government, 2022). Similarly, AMR modelling tends to focus upon mortality due to AMR, rather than on morbidity. However, if predictions of the increasing incidence of AMR infections are correct (OECD, 2019, p. 7), the social burden of these infections will continue to grow.

Smith (2015) suggests that until recently there has been a lack of engagement by social scientists on the issue of AMR which he attributes to the imbalance of funding between basic and social science, a focus upon technological and biomedical solutions to AMR and trends in research. There is a growing recognition of the importance of inter-sectoral and inter-disciplinary knowledge, especially the insights and evidence from social science disciplines to inform and support more effective actions against AMR (e.g Minssen et al., 2020). A range of social science work is contributing to theorising various approaches to AMR (see review in Chandler et al., 2016; Whittaker & Do, 2023). This includes among others: critiques of narrow behavioural approaches (Broom et al., 2021a; Chandler, 2019; Holmes et al., 2016; Minssen et al., 2020); understandings of AMR among lay publics (Davis et al., 2020a; 2023; Whittaker et al., 2019) and practices of antibiotic use (Tompson & Chandler, 2021); media coverage and public education (Davis et al., 2020a; Brown & Nettleton, 2017); antimicrobial use among healthcare providers and contingent actions that sometimes undermine stewardship principles (Broom, Pearson & Chandler, 2019); the political economy of pharmaceutical production, access and distribution; vulnerabilities and structural stratification of AMR (Hinchliffe, 2022; Kalam et al., 2021); its distribution along lines of social inequality and poor water and sanitation (Broom et al., 2021b); nascent work in other-than-human and multispecies ethnographies and its implications for ‘One health’ approaches (Cañada et al., 2022; Kamenshchikova et al., 2021); and analysis of international and national AMR guidance policies (Mitchell et al., 2019; 2022). Yet within the social science literature on AMR, there remains a paucity of research on the social burdens of AMR; the effects on individuals, communities and health systems of morbidity and mortality from AMR; the social stigma of infection; and care of people with chronic untreatable AMR conditions.

In this paper, we aim to address this through the results from a qualitative study of people living with chronic AMR infections seeking to understand in-depth their experience of infections, their interactions with health providers and therapeutic quests for care, the effects upon their lives and that of their families and caregivers. Although their conditions are diverse, as with other chronic conditions, their stories express common difficulties of maintaining a coherent sense of self as illness, debility, treatment and care regimes disrupt expectations of the life course (Estroff, 1993) and constitute new forms of ‘chronic living’ (Wahlberg, 2009; Wahlberg et al., 2021). Phenomenological accounts show chronic conditions often lead to ‘disrupted lives’ whether biographically or socially (Bury, 1982). From people living with long term communicable or non-communicable conditions, whether cancers, HIV, diabetes, stroke or congenital heart disease, stories of lived experience capture the ways in which their chronic conditions shape their daily living, characterised by various care infrastructures, the disruptions of hospitalisations, complex therapeutic quests, long-term medication, everyday experimenting, reliance on others, uncertainty, pain and suffering as patients look for care, meaning, support and ways to cope (Manderson & Smith-Morris, 2010; Langstrup, 2013; Mattingly et al., 2011; Mol et al., 2010; Pols, 2013). So too, for the informants in our study, long-term AMR infections and their sequelae have shaped ‘new kinds of living’ (Wahlberg, 2009).

Further, we interrogate the notion of ‘AMR survivorship’ currently being promoted as part of a public education campaign by the WHO. In August 2022, the WHO called for expressions of interest from ‘AMR survivors’ and their caregivers to serve in the inaugural WHO Task Force of AMR Survivors (WHO, 2022). This forms part of an ongoing campaign to make the threat of antimicrobial resistant more visible to the general public globally through the lived experience of peer spokespeople as public advocates and educators—a strategy that has been used successfully for a range of issues, for example, most notably in the case of HIV/AIDS or breast cancer advocacy. Likewise, the Infectious Diseases Society of America (IDS) promotes patient stories as a means ‘to engender a strong sense of urgency to address drug-resistant infections and the lack of new antibiotic development’ (Infectious Diseases Society of America, 2022). In this paper we question this notion of ‘survivorship’ and whether people with the diverse experience with chronic AMR infections we document really constitute themselves as ‘survivors’ as a biosocial group (Rose & Novas, 2007) with potential for activism.

Methods

The study comprised of 12 qualitative semi-structured interviews with a total of 15 people, including 9 ‘survivors’ and 6 caregivers across 2021/22. A qualitative approach was best suited for this study as we wished to document in depth the social burdens of AMR through the collection of narratives of the lived experiences of survivors and their caregivers. Interviews included a small, structured section collecting demographic data and then a series of open-ended questions aimed at providing in-depth narratives and explanations from people on the following issues: their experience of AMR infection; the context of the diagnosis; communication with healthcare providers and access to medical information; medical travel; social and financial impacts of the infection; and social care. Interviews took approximately one hour to two hours and in some cases, informants sent further written material, diary notes and pictures they took during their treatment journey overseas.

Recruitment took place through advertisements on social media sites on Twitter, LinkedIn and the Facebook group of Centre to Impact AMR as well as the Facebook group of patients with urinary tract infection (UTI) and Limbs 4 Life - the National Amputee Network. As we shall discuss further below, recruitment was more difficult than expected, due to the fact that we did not recruit through clinical sites and the lack of a community of patients who self-identified as suffering from AMR. As this study was conducted during the COVID pandemic and multiple lockdowns in Melbourne, it was not possible to recruit via infectious disease specialists who may have facilitated recruitment. We also recruited several individuals who had self-initiated contact via email with the fourth author JB during that period seeking information on possible phage therapies who were then invited to participate. Hence, this is by no means a representative sample of people with AMR infections; rather it represents a small purposive sample of people who recognise themselves as having chronic AMR infections.

The sample interviewed consisted of seven men and eight women. Four members of our sample had sought phage therapy (three had been to Georgia to undergo phage treatment and one ordered treatment via post). Details of the participants are listed in Table 1. Several potential participants refused to be involved, for example, one amputee we approached feared reliving the trauma of his experience in which he lost an arm and nearly lost his life due to a resistant infection. Another potential informant experienced a hospitalisation before she was due to be interviewed. One person who contacted the research team after seeing our recruitment ad on Twitter dropped out of the research after receiving our Explanatory Statement without providing further explanation, despite our multiple follow-up attempts.

Table 1. Informants’ characteristics.

Name	Sex (Female: F; Male: M)	Age	Highest educational level	Employment status	Type of informant (Survivor: S; Caregiver: C)	Condition (if informant is an AMR survivor)
Albert	M	63	Bachelor	Unemployed	S	Methicillin-resistant Staphylococcus aureus (MRSA)
Ben	M	55	Postgraduate	Employed full-time	C	Bronchiectasis
Bob	M	73	Bachelor	Retired	C
Carol	F	56	High school	Employed full-time	C
Dan	M	75	Bachelor	Retired	S	Resistant Pseudomonas aeruginosa infection
Ellen	F	70	High school	Retired	S	Staphylococcus epidermidis
George	M	68	Bachelor	Retired	C
Jenny	F	32	Postgraduate	Employed part-time	C
Joanne Matthews	F	49	Bachelor	Self-employed	C
John	M	59	Bachelor	Employed full-time	S	Ankle infection
Lucy	F	69	High school	Retired	S	MRSA
Peter	M	71	Bachelor	Retired	S	Resistant E. coli infection
Sandra	F	37	Postgraduate	Employed full-time	S	Resistant Pseudomonas aeruginosa & Enterobacter cloacae infections
Sandy	F	53	Bachelor	Employed full-time	C
Tina	F	24	High school	Employed part-time	S	UTI

Given the traumatic illness experiences of our interlocuters, care was taken within interviews not to re-traumatise them and informants could cease the interview at any time. Ethical clearance was sought through the Monash University Human Research Ethics Committee (Project ID: 29413). Psychological support and further medical information were available if our interviewees required it; however, it was not needed and most informants expressed relief to have someone listen to their story. All names used are pseudonyms except in the case of one woman who explicitly wished for her real name to be used.

Interviews were coded and analysed thematically by AW and TD. We compared and contrasted interviews to develop the codes and met to discuss the emergent themes. Major themes included: the social impacts of resistant infections; the emotional and physical impacts on caregivers; the burdens associated with everyday management of the infections; inadequate explanations about AMR from healthcare providers; the common use of alternative therapies; and the lack of interaction with peer ‘AMR survivors.’

The social impacts: Disruptions and distress

Survivors spoke of long and often traumatic repeated illnesses as a result of their AMR infections. The emotional, physical and economic costs of these infections were high. Infections limited people’s ability to continue their work, caused social isolation and distress. For example, Tina is a 24-year-old woman with a chronic UTI which interferes with her ability to undertake normal daily tasks. At any given time, bladder spasms can interfere with her ability to work and she avoids anything she believes will flare-up her condition:

I actually had major symptoms this morning. I had just – I actually put my – I get up every morning to go to the gym at about 5:30. So my alarm went off, and I just had really bad pressure, and burning. So I went to the toilet and the burning feeling just rushed straight to me. And it was really painful. (…). And had a glass of water, and grabbed a heat pack. And then I went back to bed to try and sleep it off before starting work. And then yeah I’ve kind of just been a bit sensitive all day. But usually yeah I get bladder spasms at night. And then I get painful urination, and just burning feeling usually half a morning every day. And then yeah sometimes it’s really bad where I just can’t get out of bed. (…). So physically I just feel constantly, it is so exhausting having this. Sometimes if I’m feeling really sensitive I miss out on events.

Similarly, Peter (71 years old) who suffers from chronic bacterial prostatitis (CBP) as a result of a resistant E. coli infection in his prostate described himself as ‘losing everything’ after several years of not being able to treat his prostate infection in New Zealand and was seeking therapies in Australia. In 2001 he said he became severely depressed as a result of his infection: ‘I was depressed, sleeping an hour a night, I certainly collapsed. I spent 16 months in bed, sleeping 20 h a day … The whole thing was destroyed by this … From that time since, assets were gone, not able to work, and depressed … It just got a lot worse.’

In the stories of our informants, AMR infections often emerge at times of other health crises, adding to their distress. Some informants described their infections as iatrogenic, a result of infections contracted while in hospital for other treatment. Whether this is accurate or not, it contributes to a mistrust of biomedical care in some informants. These may have followed a previous medical procedure or surgery or might have started as an infection that they expected would be self-limiting but then progressed into a never-ending series of crises. For example, Lucy’s infection started in May 2020. She had been treated for a benign cancer near her mastoid muscle behind her left ear that affected her hearing canal, and the facial muscle and balance. She had gone through a large operation to remove the tumour. In May 2020, she had an endoscopy for a different condition and a few days later the area behind her ear where she had had surgery started oozing. After tests, she was told she had MRSA. Lucy thinks that she picked up the infection because the wound in her head had not healed and remained open before the endoscopy and she was not prescribed any antibiotics both before and after the first operation.

At first, she was cared for by her GP but in April 2021, when Lucy met with a new ENT specialist, she was immediately booked in for many tests and was put on intravenous antibiotics for resistant Pseudomonas aeruginosa. For four weeks, she took the antibiotics delivered to her home with the attendance of a nurse who came to administer it and helped with the dressing. After these four weeks, Lucy thought her condition had been settled but the infection came back after two weeks and she was put on another set of strong antibiotics until the time of the interview in September that year. She was told by her infection specialist that she might need to continue using the antibiotics. She still has discharge from the infection and does not think it will heal. Taking the antibiotics makes Lucy feel nauseous and tired, and gives her headaches. She feels it has badly affected her quality of life (‘awful, pretty bad’). It affects her social life too, especially when she first had a new-born grandchild and was told not to hold him as her doctor was concerned that she might pick up a germ from the baby. She was also concerned about the risk that her husband, her main source of support, might also get infected because of his weak immunity as he is immunosuppressed following a kidney transplant years before: ‘I don’t know what the future holds … I’d like to help [looking after grandchildren]. Our daughter bought a place not far from us. I want to help them when they are at work. I want to think that I’d still be around, but I can’t even plan that because I don’t know how I will feel then.’

In such accounts the experience of the infection and its treatment comes to dominate sufferers’ lives and disrupts their imagined futures (Bury, 1982). The specificities of their ongoing treatment and care shape new ‘kinds of living’ (Wahlberg, 2009). What is usually considered a self-limiting infection, is made chronic due to the lack of adequate treatments. Moreover, for some people the cascading of multiple medical conditions complicates treatment further (Manderson & Warren, 2016).

The emotional and physical impacts upon caregivers

Likewise, carers of our informants encountered major disruptions to their everyday work and life, and suffered considerable emotional stress and concern. Joanne Matthews [her real name by request] had to step down from her senior role in the public service when her first daughter constantly suffered severe reflux since birth as a result of a resistant Streptococcus and needed to be tube-fed for years:

Her infancy was just horrendous. We didn’t sleep. So my husband and I used to sleep in 4 h shifts. She had to be held upright so that she wouldn’t aspirate, because she otherwise would turn blue, because the stuff would come up, and go over into her lungs. So he would come home from work, I would have a shower, and go to bed, because you couldn’t – you couldn’t put her down to have a shower. You couldn’t – everything you did you had to hold her upright.

The burdens on caregivers can be exacerbated by other issues such as geographical distance to travel for medical care, age and family responsibilities. For example, Carol (56 years-old) is the only child and caregiver of her 86-year-old mother with a resistant UTI. She drives her mother who lives in rural New South Wales to monthly medical appointments in Canberra – the daughter’s residential city:

[I]t gets very stressful, I have a very busy job and, and a big job. And so, it means many catch up, though look my work is very flexible and they have never ever had an issue with me going. You do what you’ve got to do, that’s not a problem but it means I do have a lot of catch up. So that, that could mean logging on at night or the next day is a 12 h day or whatever so. (…). It affects me, it has becomes draining because and more because I want her to be well. I don’t like to see her suffer which makes me angry. So I get into that mode, it’s about the only way I deal with it probably.

The need to attend frequent and multiple specialist appointments, hospitalisations and trying to provide emotional support while maintaining jobs and family routines caused caregivers to feel psychological distress and physical and mental exhaustion. The home takes on aspects of the clinic and becomes part of the care infrastructure (Langstrup, 2013). Ben (55 years old) is the caregiver for his wife Trudie who suffers from bronchiectasis, a chronic lung condition following a Mycobacterium fortuitum infection which occurred following a period when she was immunocompromised after suffering a relapse of myeloid leukaemia two and a half years’ prior to our interview. She is currently undergoing an 18-month intravenous antibiotics regime to treat her lungs, requiring a nurse to come daily to administer it. She suffers severe side effects. Everyday Trudie requires a machine to help stabilise her oxygen levels. We interviewed Trudie’s partner Ben who is her main caregiver. He cried when describing the effects of the condition and fear he feels about the difficulties in breathing his wife suffers:

I’m getting upset talking about it. [sobbing]. I’m glad she’s not here

now, because it’s very worrying, because – I’m really sorry, I didn’t

expect. (…). Yeah, well, the kids, you always wonder how, if this

comes and it can’t be treated, we’ve got some challenges.

As migrants originally from Ireland and The Netherlands who relocated to Australia from the U.S five years ago, they are concerned that her condition will affect their desire to apply for permanent residency and they are unable to travel because of her condition. They may have to return to The Netherlands: ‘We’re pretty privileged and pretty lucky that, even if she needed the treatment, we could pay for the treatment. I think, for other people in our situation, they probably would have had to have left the country by now … because when she had to go back on her medication, because we’re not covered by Medicare, it’s not US numbers but it’s still $4000 Australian dollars [∼US$2706] a month.’

Ben’s observation that they are privileged and able to afford treatment highlights the importance of Australia’s pharmaceutical benefits scheme and national health insurance in providing subsidised medicines and treatment. In other parts of the world without such support, chronic AMR infections could spell financial distress for families (Ahmed et al., 2018).

Burdens of infection management

As these stories attest, people’s experiences with AMR infections was one of repeated and aggressive treatment regimes, often at considerable economic cost. The usual experience for informants was a cascade of interventions. For example, John (59 years-old) described his prolonged ankle infection:

Infectious disease specialist came back, got me on the right antibiotics. I had a few more – all up, I had 18 procedures on the ankle to remove. (…). Washing out and then cutting – and cutting bone out, bits of infected bone. So through all that, I ended up coming out – they had to do a skin graft because they had gone in so often, they destroyed the integrity of the incision. (…) [B]ut so this was 2020 I was in the hospital probably until about the mid-March of that year, and then I was on some pretty heavy – it was IV [intravenous] antibiotics at first, and then a tablet for that.

Likewise, Dan suffers from bronchiectasis, a chronic lung condition following a resistant Pseudomonas aeruginosa infection which he believes he caught from a baby cousin. He was initially treated with tetracycline but by the time of our interview requires prolonged treatment with ‘the strongest oral and IV antibiotics’ and ‘a lot of hospitalisations’ having had three of four ‘lung clean- ups’ and major operations. He finds he has become socially isolated for fear of catching transmissible infections now and feels upset by the way people look at him, especially during the COVID period, as the infection makes him cough and spit and other people feel disgusted. Dan says he also feels very nauseous and the coughing is disruptive to his life because he cannot stop it and experiences pains in the chest from coughing too hard.

Like Dan, informants were usually placed upon a series of antibiotic treatments, such as Vancomycin, to treat the infection but with attendant side-effects. They were discouraged by the poor response of their infections to several rounds of antibiotic treatments, and often resented the side effects they experienced:

They make me feel nauseous, light headed, tired and I have a bad stomach as it is and I have to have them on an empty stomach and I don’t see why I should continue them if the infection is still there, and that’s the only thing that they respond to. I don’t know what to do to be honest with you. (Lucy, 69-year-old Woman with MRSA)

Then after lots of tests and everything else they discharged me on February 17 and put a PICC [peripherally inserted central catheter] in my arm and I was on Vancomycin antibiotic. See the hospital in the home was what they called it; the nurse would come out every day to change the antibiotics every day. (…). So I had a bottle, carried around everywhere with me with the antibiotics. When they monitored my infections by with CRP so I had blood tests twice a week sometimes 3 times a week. And checking to see if I still had the infection and what was happening. (70-year-old Ellen with Staphylococcus epidermidis)

The ‘hospital in the home’ as Ellen described exemplifies how the condition comes to invade every part of their lives, involving the immense efforts and dilemmas associated with ‘chronic homework’ (Mattingly et al., 2011) - the everyday burdens of managing their infections. The lack of control Lucy expressed (‘I don’t know what to do’) was common among our informants and reflected the feelings of uncertainty about the future they experienced. For some, their sense of a lack of control was exacerbated by the challenges they faced in finding expert advice and what they perceived as poor and inadequate explanations from their healthcare providers.

Challenges in seeking expert advice on AMR

Some of our informants said they had never heard about antibiotic resistance even though they had been attended by infectious diseases specialists for many years. A few admitted their first encounter with the term started while reading our Explanatory Statement. This supports findings in research conducted with in-patients with AMR infections from migrant backgrounds in a Melbourne hospital. In that study none of the in-patients interviewed spontaneously identified the reason for their extended hospital stay as due to an AMR infection or even on a ‘superbug,’ rather, they identified their hospitalisation as due to ‘complications’ of their presenting issue (Whittaker et al., 2019).

Similarly, our informants complained that they had little understanding of their resistant infections and only a few could name the microbe causing their infection. They referred to multiple ‘tests’ to find the cause, which were often described as inconclusive, were unsure about the next steps in their treatment and other options and only some could describe the drugs they had been prescribed. This confusion was exacerbated by the fact that many had to see multiple different specialists to deal with their infection and in some cases, those encounters went for years without returning an accurate diagnosis and effective treatment.

Several informants reported difficulties in their communication with medical specialists. Peter likewise described what he termed ‘microexpressions of contempt’ from his doctors in relations to his chronic bacterial prostatitis. He wrote:

A very common thread through all my community interactions is the frustration generated from not being listened to, when, especially later in the infection stages, the patient often has a better understanding of what has occurred in their illness, progression, drug courses, test results, etc., which may not be otherwise easily learned by a practitioner due to shortfalls in the medical record system and time constraints. Pain, worry, chronic fatigue, not being listened to, provider insistence on treatments long shown to be of nil efficacy, possibly the worst being supposition and experience bias, accumulates and builds to where it can leave a CBP patient in a victimised state of mind negatively affecting the Doctor-Patient relationship.

By ‘supposition bias’ he suggested that once one doctor had made an erroneous determination, it would rarely get questioned by other doctors: ‘Worse, then, each reassessment, variation, supposition, experience biases, all get added into the record system, ending up years later, like the end-mangled message sent along the trenches. A patient is powerless to correct this.’ For Peter it had taken years and a trip to Australia from New Zealand before he received proper diagnosis. He spoke of his experience of ‘patient shaming’ which he described as arising from having a urogenital infection caused by E. coli and the need for prostate massage for test samples, ‘which some doctors dislike as much as the patient’. He suggested that ‘once there appears to be no treatment options for a patient, they become an embarrassing problem for some doctors.’

Sandy (53 years-old) is the caregiver to her 59-year-old husband with a prolonged ankle infection. She criticised the attitude of his specialist to her questions and their use of alternate therapies. As an Indigenous woman, she asked about natural therapies which she wanted to use in keeping with her cultural traditions ‘we know that our ancestors were using natural therapies, and so that’s what we sort of err towards’. She interpreted dismissive responses from specialists as racialised:

[I]f you question anything, particularly in those professional realms where people are doctors and professors and what-not, and you don’t have any foundation in those fields, but you go out and you seek information and/or other alternative therapies and things and it doesn’t fit that status quo, so it’s viewed as being troublemakers and, I mean, I see that as an Aboriginal person. If I don’t follow the status quo of being told what to do and I arc up and stand still, then I’m automatically labelled a defiant native, kind of thing.

The use of alternative/non-orthodox therapies

Like Sandy’s husband, many informants were using ‘syncretic’ therapies (Stoner, 1986) – a combination alternate or complementary or dietary therapies alongside their allopathic medicines to assist in healing, ‘strengthening’ the immune system and to deal with the side effects of pharmaceuticals. Sandy’s husband John (59 years old) used a range of therapies to help with the side effects of his antibiotic treatment including medical cannabis oil which he sourced via the post, hemp seed oil, vitamin B6 and drinking ginger tea. However, in some cases patients did not tell their medical staff of their use of alternate remedies for fear of ridicule or disapproval by their doctors. Jenny (32 years old), a caregiver of her grandmother with a chronic UTI, explained:

[W]e believe a lot in homeopathy treatment, so we do a lot of that, and that’s something that we also give her [the Grandmother]. (…). And my mum is kind of the person who is most passionate about it and she’s got homeopathic remedies for all sorts of things – you know, if you have a headache or diarrhoea, period pain, whatever, she’s got all these different homeopathic remedies for that. And she’s been giving my grandmother also things whenever she has some kind of ailment, and in her case it’s been very effective. (…). Of course, we don’t consult with the GPs or doctors about that, because they don’t really believe in these kinds of. [Laughing]. It’s helped, and definitely helped my mum – grandma, as well when she had things like the UTI, or some kind of injury because of a fall.

Informants expressed difficulties in accessing information about possible alternative treatments for their AMR infections from formal channels. They relied upon their informal networks, or Google searches on the internet to research about alternate treatments and to improve their health literacy about AMR. One informant Joanne Matthews has become a vocal advocate for the use of natural therapies following her daughter’s experience of severe gastrointestinal reflux disease after a Streptococcus infection requiring major stomach surgery and long-term antibiotics. She attributes her daughter’s ‘cure’ to natural therapies. Following consultations with GPs, gastroenterologists, an orthopaedic surgeon, a geneticist and an ENT/allergy immunology specialist, she consulted an integrative medicine practitioner for her daughter:

She is part of the Australian Integrative Medical Association. So these are the – these are people who – I mean I was pretty sceptical when we went I have to tell you, [I’m a] pretty traditional kind of girl. But they kind of combined – they’ve got a prescription pad like everyone else. They’re a fully trained GP. But they’re also trained – things like traditional Chinese medicine … . Some of them have ayurvedic medicine our – our … ayurvedic, she had traditional Chinese medicine, and western herbalism, because she used herbs, because – and in this instance, there was no point in trying to uses antibiotics, because all of the ones we used up to there had either not worked, or nearly killed her.

Following slowly introducing a herbal formula after six months she stated that test results found an decrease in the Streptococcus infection. Her daughter has stopped requiring the other reflux medications and is eating normally, taking a vitamin C supplement and probiotics along with the herbal formula.

Several of our informants had travelled seeking other non-orthodox treatments for their infections. In doing so they position themselves as experimental subjects, trying therapies not available in their home countries. Three informants experimented with phage therapies with varying degrees of success. Phage therapies involve the use of viral bacteriophages or viruses that attack bacteria to treat infections as an alternative to the use of antibiotics (Brives & Pourraz, 2020). Only a few places in the world offer bacteriophage treatment. The best-known clinic is the Eliava Institute of Bacteriophages, Microbiology and Virology in Tbilisi (Georgia) which has been using bacteriophages in research and treatments since 1923.

Sandra (37 years old) had suffered with copious malodourous nasal discharge from her left nostril despite ENT surgery for the last fifteen years she has taken Ciproflaxicin/Levofloxacin in a low dose. After moving for work to Germany, she was diagnosed her as having resistant Pseudomonas aeruginosa and Enterobacter cloacae infections. Following hospitalisation in 2020 during which time her Enterobacter cloacae infection was treated successfully, she was recommended to consider phage therapy to combat her nasal Pseudomonas aeruginosa infection. She travelled to Tbilisi where she was given bottles containing standard phage treatment to drink each morning and evening along with a nebuliser to inhale phage twice a day. She continued treatment at home and has now found her nasal discharge has decreased and infection has largely cleared. Likewise, Albert (63 years old) who found out he has a Methicillin-resistant Staphylococcus infection in his prostate also went to the Eliava centre in Tbilisi in April 2018. He stayed for a fortnight during which time he was injected with phage every morning. However, after his return, the home administration of phage caused him a lot of distress. He brought back phage that required daily injections in the urethra which he could not do properly. Around four weeks later the infection came back. Despite the difficulties he continued to use phage imported from Georgia (the final treatment was in a gel form) followed by some medications (nitrofurantoin) in 2018. He told us his condition seems quite stable though he is taking ‘some pills’ prescribed by his GP.

Phage therapies are also delivered via post. Another informant, Dan who has bronchiectasis knew about phage therapy after reading reports and scientific journal articles and books on the subject and contacted one of our co-authors JB after seeing him present on television about his research on bacteriophages. His specialist has organised for him to receive a phage sample specific for the pathogen he has which will be delivered to Australia in a phial to be administered by his specialist or GP which will cost him about AU$4000 (∼ US$ 2705) out of pocket.

Discussion: AMR survivors?

The people we interviewed for this research suffered from chronic, resistant infections that proved difficult to treat with standard regimes and caused physical, social and emotional distress to them and their carers. Stories of their ‘chronic living’ with AMR and its sequelae tell of its impact not only upon their physical and mental health, but social and work lives, and imagined futures. Their interactions with the biomedical community often proved frustrating. Most undertook arduous treatment regimes – of powerful antibiotics with debilitating side effects, combined with a range of other complementary and alternate therapies – some travelled overseas to seek treatments unavailable in Australia. As a small sample of people living with chronic AMR infections they epitomise a little of the hidden toll of AMR morbidity in the community (Wozniak et al., 2019). It is acknowledged that the experiences of this self-selected sample in a high-income country may not represent the experiences of people in other contexts. More studies documenting the social burdens of living with a chronic AMR infection are needed in varying settings.

Our study has implications for the WHO’s campaign calling for ‘AMR survivors’ as it questions the assumptions that underlie the use and adoption of this terminology. Like the infections they are affected by, AMR survivors are largely invisible as a group. The notion of an ‘AMR survivor’ is not an identity readily adopted by the interlocuters in our study. There are few spontaneous patient advocacy groups around the topic of AMR. Notable exceptions include the work of Vanessa Carter - a patient advocate who started the Antimicrobial Resistance Fighter Coalition in South Africa (Antimicrobialfighters, 2023) and the AMR Narrative organisation (AMR Narrative, 2023). Likewise, the ‘Faces of Resistance’ campaign by the Infectious Disease Society of America (IDSA, 2022) collects stories from various patients about the debilitating effects of drug-resistant infections. However, very few of our informants had contact with other people with similar conditions. Only two of our informants had undertaken initiatives to link with others suffering from AMR infections. For example, Peter had run an online forum for people with CBP which he said attracted around 8000 contacts during a period of nine years. Joanne Matthews whose daughter had Streptococcus has become an advocate for natural therapies in AMR treatments. None of the other informants were part of any network. Most acted as individuals or with their families, struggling to assert their needs against the context of medicalisation.

It is difficult for people suffering from AMR infections to constitute a ‘biosocial’ (Rabinow, 1992) group who might identify with a single disease name or syndrome. The concept of biosociality was developed by Rabinow (1992) in his work on the implications of the Human Genome Project. He noted the new group and individual identities emerging from categories in biomedicine and science. The term has since been used to describe groups of people forming around aspects of their biological status, such as groups formed around one’s HIV status or infertility (Ong, 2010; Rapp, 1999, p. 302; Whittaker, 1992). These collective identities involve struggles over individual identities, collectivisation, access to knowledge and treatments, demands for recognition and claims to expertise as well as a new ethics and politics of embodied experience (Heath et al., 2007).

Rather than a single biosocial identity group, people living with chronic AMR infections suffer disparate infections, which have affected various parts of their bodies and may not identify as having anything in common. They were more likely to identify themselves with patients experiencing sepsis or the ‘sequela’ of the original infection rather than ‘AMR survivors.’ Someone with chronic bacterial prostatitis is unlikely to see themselves as having something in common with a person with bronchiectasis caused from an AMR infection or a chronic UTI, or someone suffering from sequelae from orthopaedic surgery with someone with a resistant gonorrhoea infection. An identity as an ‘AMR survivor’ is thus an unstable one that is caused through multiple pathogens and has various trajectories; it may be a transitory state for some, while a chronic state of being for others. From a clinical point of view, however, they have had a common experience of an infection that has proven resistant to treatments with often long-term chronic sequelae and implications for their future treatments.

The ‘social’ in biosociality incorporates several assumptions. Not only does it assume a level of class privilege education and opportunity to transform sociality into overt political forms (Bharadwaj, 2013), but also that such advocacy is usually in opposition to something or state or medical power (Rose & Novas, 2005). Unlike breast cancer or Parkinson’s Disease, there are no clearly identifiable advocacy groups for patients with AMR infections based around a common disease identity. The term ‘AMR survivors’ thus is an entirely heuristic term that may not coincide with former patients or current patients’ self-identification.

Further barriers to the development of a collective identity as an ‘AMR survivor’ may be due to the stigma of certain conditions which discourage strangers sharing sensitive medical information to each other, even anonymously on the internet. Others try to avoid blame as they assume it is caused by the survivors’ past overuse/misuse of antibiotics and criticise their treatments with long term antibiotics, as Tina who suffers a chronic UTI stated: ‘they judge me, and tell me how wrong it is. And tell me how bad it [antibiotic treatment] is for me.’ As noted in our interviews, the sense that a condition such as an AMR infection is a transitory state that might be ‘cured’ through the ‘right’ antibiotic or phage treatment persists, narrated through biomedical discourses that stress confidence in the ability of science also mitigates against adoption of AMR as an identity term. This encourages patients to submit to the treatment regimens and their doctors’ advice rather than collectively fight to raise awareness, advocate for patient rights, lobby for phage treatments or state support. The nascent Facebook groups covering AMR we found as part of this study tend to trade what Rose (2007, p. 146) describes as a ‘new informed ethics of the self - a set of techniques for managing everyday life in relation to a condition, and in relation to expert knowledge’ rather than advocate for change. Further research is required into the terminologies that resonate with patients. In addition, the language used by medical staff to patients to describe their infections needs examination—it may not include the terms ‘antimicrobial resistant infection’ or AMR, and this may hinder patients recognition that AMR is implicated in their lengthy care.

In addition, many of the participants in this study are often so constrained by their chronic conditions and disabilities that the only forms of sociality they may exercise is to cooperate with the disciplines of the medical regimes and their family networks, even this may be restricted at periods of medical isolation. Moreover, there is little opportunity, encouragement or expectation that patients will socialise with each other, appointments with infectious disease specialists or outpatient departments are not scheduled such that a cohort exists, nor do they will regularly meet each other at clinic appointments; rather, each patient is treated as an individual case.

As noted earlier, our recruitment strategy targeted a range of social media sites and organisations in our efforts to identify people who had survived an AMR infection. Some younger participants had joined Facebook groups (e.g an international chronic UTI patient site) but often took an observer role in those platforms, rather than actively participating or were ambivalent about the relevance for the Australian context as they discussed treatment protocols from the US or UK. This lack of clear networks of people affected by AMR limited our ability to recruit participants for our research, who needed to recognise themselves as having resistant infections. Our study's experience with low recruitment via social media has offered thoughts for researchers to consider when studying the utility of online platforms to invite participation in health and medical research. While social media has the potential of reaching large audiences, many researchers have noted the limitations of recruiting research participants on those channels, including a lack of regulatory guidance (Gelinas et al., 2017), low control over access by people who do not satisfy the recruitment criteria, or sampling bias (Arigo et al., 2018). Although we were constrained by the COVID pandemic, a study that recruited from infectious disease physicians would make recruitment easier; however, such recruitment might be less likely to recruit those who in our study had sought treatment through travel, having exhausted local biomedical resources. For future research, we recommend combining different recruitment methods by using both social media and advertisements at medical settings. As COVID restrictions have eased across the world, recruitment via infectious diseases clinics, but also health services in Australia and overseas which offer novel AMR therapies will potentially reach a greater number of research participants with diverse backgrounds and treatment experiences.

In her work on women living with metastatic breast cancer, Greco (2022) analyses how the experiences and subjectivities of women are characterised by complex uncertainties. She uses the concept of the ‘crisis of the presence’ as a way to conceptualise long-term conditions in which the disruptions caused by the condition have no foreseeable end. This concept was coined by Italian anthropologist De Martino (1973[1948] cited by Greco) to describe the existential dimension of the losing of one’s place in the world and capacity for agency, that is embodied as a common sequence of negative experiences that greatly limit one’s agency. In the case of AMR infections, the ongoing, disruptive, disabling and in some cases potentially fatal conditions requiring ongoing management, repeated interventions and bids to try new untested therapies limits the sense of control and agency of sufferers. It is the loss of agency and control that characterises their chronic lives. Even if seemingly resolved, our informants were cautioned that the infection may remain dormant (‘persisters’) (Hill et al., 2021) and re-emerge at a time of physical vulnerability or immune stress, or new surgical intervention to once again cause suffering and damage. The frustrations expressed by patients with their care and the failure of repeated medicines to cure them are likely to be shared by their physicians, this would be worthy of further study.

The stories of these people provide a glimpse of the social burdens of chronic AMR infections. The WHO project of imposing a label of ‘AMR survivorship’ assumes individual recognition of broader microbiosocial connections and that patients who are treated as individuals within the medical system will spontaneously recognise the common issues they have with others. It also posits an imagined ‘survivor’, not as one of the many people who may have had a resistant infection resolved with the correct treatment, but those suffering particularly ‘life or limb’-threatening infections. In doing so, it places the burden for advocacy upon an already vulnerable group (Broom et al., 2022). This study questions the WHO’s call for AMR Survivors’ stories and use of such terminology. It may be the case that the invented biosocial identity of ‘AMR survivors’ might be promoted successfully; however, currently such a label is not one that is grounded within the general public, nor does it appear to assist with the practicalities of chronic living with AMR.

Acknowledgements

Our research would not have been completed without the support of Dr Kerry Dunse in facilitating the recruitment process of our study. We are indebted to all the informants who generously shared their time participating in our interviews. We would also like to thank the three anonymous reviewers for their thoughtful feedback for earlier versions of this paper.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The research is funded by the Centre to Impact AMR, Monash University.