“Navigating Healthcare and Social Interactions: The Impact of Multidrug-Resistant Bacteria on Wound Patients”– a qualitative study

“Navigating Healthcare and Social Interactions: The Impact of Multidrug-Resistant Bacteria on Wound Patients”– a qualitative study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article “Navigating Healthcare and Social Interactions: The Impact of Multidrug-Resistant Bacteria on Wound Patients”– a qualitative study Karin NELSON, Kristina CARLÉN, Ami FAGERDAHL This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7486214/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background Multidrug-resistant bacteria are a growing global health concern, fueled by antibiotic misuse and poor hygiene. Wound carriers face increased infection risks, as compromised skin becomes vulnerable to bacterial colonization. Hard-to-heal wounds require evidence-based care to minimize complications. While antibiotics aid treatment, overuse accelerates resistance. Many multidrug-resistant bacteria carriers experience stigma and inconsistent healthcare support, highlighting knowledge gaps among both patients and professionals. The aim of this study was to describe how people with wounds carrying multidrug-resistant bacteria experience the response from their surroundings. Methods In this qualitative study, semi-structured interviews were performed with eight patients with wounds, aged 31 to 79 years, carrying multidrug-resistant bacteria. The participants consist of seven men and one woman, with data analyzed through content analysis. The research follows COREQ guidelines to ensure methodological rigor. Results The analysis identified two overarching themes: “Response from the surroundings” and “Carriership of multidrug-resistant bacteria affects the surroundings.” The first theme encompasses sub-themes related to interactions with healthcare providers, family, friends, and broader societal responses. The second theme examines the excessive use of protective equipment, the carriers' perceived responsibility toward others, and society’s role in disseminating accurate information about multidrug-resistant bacteria. Additionally, the study reveals substantial knowledge gaps among participants regarding their carrier status and multidrug resistance. Many were unaware of the bacteria they carried or the appropriate management guidelines. While most reported positive experiences with healthcare professionals, some encountered inadequate treatment and stigma, emphasizing the need for consistent and informed care. Notably, the internet emerged as a key resource for health information, shaping participants’ understanding of their condition. Conclusions Though most participants felt well-treated, some experienced negative treatment. Increasing knowledge about multidrug-resistant bacteria among carriers and the public is crucial to reducing fear and improving care quality. public health multidrug-resistant bacteria ulcer patient experience wound infection Background Multidrug-resistant bacteria are bacteria that have developed resistance to antibiotics. Overuse of antibiotics, such as using them for incorrect indications or purchasing them without a prescription, promotes bacterial resistance. These bacteria spread further due to poor hygiene practices in healthcare and animal husbandry, and through global travel and transport. The number of people carrying multidrug-resistant bacteria is increasing worldwide [ 1 ]. The skin serves as a powerful barrier protecting underlying tissues and is colonized by microorganisms that typically do not multiply. However, if the skin is damaged or altered by disease, these microorganisms can establish themselves in the wound and cause infection. The risk of infection depends on the type of infection and the extent of tissue damage [ 2 ]. Having an open wound poses as a major risk factor for acquiring a multidrug-resistant bacteria infection and also being in risk of infecting others [ 3 ]. A wound is an injury that disrupts the skin’s normal physiology, and wound healing is the process by which the body attempts to restore the skin and its functions [ 2 ]. While ulcers can heal within a few weeks, they can also be difficult to heal and long-lasting. Hard-to-heal wounds are defined as ulcers that have not healed without complications within six weeks. All wounds have the potential to become hard-to-heal and the prevalence is raising. The primary goal is rapid wound healing, balanced with the patient’s well-being, available resources, and costs. Evidence-based wound treatment can improve healing outcomes. Dressings must be changed according to the wound and the patient’s condition. Difficult-to-heal wounds require frequent care and dressing changes to promote healing [ 4 ]. While antibiotics are commonly used to treat wound infections, their overuse or misuse can lead to antibiotic resistance, making infections harder to treat in the future. Additionally, antibiotics may not always reach the source of the wound infection effectively, and their use should be combined with appropriate wound care practices such as debridement and proper wound cleaning [ 5 ]. Studies have shown that people carriers of multidrug-resistant bacteria, such as Methicillin-resistant Staphylococcus aureus (MRSA) and Extended-Spectrum Beta-Lactamases (ESBL) often feel that healthcare staff lack knowledge and do not always treat them well [ 6 – 9 ]. Participants with MRSA described feeling like they were “plague-infected” [ 6 ] or affected by a contagious disease such as leprosy [ 7 ]. Some were shocked upon learning of their infection, while others did not believe the infection was contagious or harmful. Questions arose about whether they could continue working, if the infection would lead to early death, or if the bacteria were hereditary [ 8 ]. Some accepted their situation, while others hoped for a cure [ 7 ]. Previous studies on living with a carriership or infection of multidrug-resistant bacteria have not always clarified whether participants had risk factors. This study focuses on a specific patient group since having a wound increases the risk of infection and the spread of infection through leaking bandages or improper wound care. Methods This study aims to describe how people with wounds carrying multidrug-resistant bacteria experience the response from their surroundings due to their carriership. Design This study has a qualitative design using an inductive approach [ 10 – 11 ]. This study was conducted in accordance with the COREQ criteria. Participants and setting The participants were recruited using a strategic sampling technique as described by Patton [ 12 ]. This method was employed to ensure a diverse and representative sample from an outpatient clinic in Sweden that specializes in treating hard-to-heal wounds. The healthcare personnel at the clinic, who were directly involved in treating these patients, identified, and approached potential participants for the study. This approach ensured that the selected participants were well-suited to provide valuable insights into the study's focus on wound care and multidrug-resistant bacterial infections. The inclusion criteria for the study were specific: participants had to be over 18 years old, have an ulcer, and be carriers of one or more multidrug-resistant bacteria. Additionally, they needed to be Swedish-speaking and cognitively adequate to ensure they could fully understand and engage with the study requirements. Data collection Eligible patients were initially provided with brief information about the study during their visit to the clinic. They were then asked to give their consent to be contacted by the research team. Approximately one week later, a researcher reached out to the patients by telephone to confirm their willingness to participate in the study. If the patients agreed, a convenient time and location for the interview were arranged according to their preferences. The semi-structured interviews were conducted using an interview guide developed by the research group. To ensure the guide’s effectiveness, two pilot interviews were initially performed. These pilot interviews were subsequently reviewed by the research group, who deemed the interview guide relevant and comprehensive. As a result, the pilot interviews were included in the final analysis. Each interview lasted approximately 20 minutes. During the interviews, participants were asked a series of open-ended questions designed to elicit detailed responses about their experiences. The interviews were digitally recorded to ensure accuracy and were later transcribed verbatim for thorough analysis. Data analysis The interviews were analyzed using content analysis inspired by Graneheim and Lundman [ 11 ], with a focus on latent content. Initially, the entire transcribed interviews were read to gain an overview and a sense of the whole text, with each interview considered a unit of analysis. In the next step, meaning units that aligned with the study’s aim were extracted. Each meaning unit was labeled with a code and analyzed for similarities and differences, then sorted into sub-themes. From these sub-themes, main themes were identified (Table 1 ). The results of the analysis were discussed within the research group until a consensus on interpretation was reached. Initially, six interviews were conducted and analyzed. After performing and analyzing two additional interviews, no new information emerged, leading the research group to conclude that data saturation had been achieved [ 13 ]. Selected quotes were translated from Swedish to English. When participants paused during their responses, this is indicated with “…” in the quotations. Ethical considerations The study was conducted in accordance with good clinical practice guidelines and the principles outlined in the Declaration of Helsinki. It received approval from the Swedish Ethical Review Authority (Dnr 2021–03886). Rigor To achieve trustworthiness in this study, the recommendations of Graneheim et al. [ 10 ] were followed. Credibility was attained by carefully selecting participants with diverse experiences related to the phenomenon of interest. Transferability was enhanced by using a strategic and representative sample of the patient group. Dependability was addressed through the involvement of multiple researchers in the data analysis, reflecting on each member's pre-understanding, and discussing the analysis collectively. Additionally, the study maintained a rigorous audit trail, documenting each step of the research process, including data collection, analysis, and interpretation. This transparency allows for the replication of the study and provides a clear pathway for others to follow, further enhancing the trustworthiness of the findings. Findings A total of eight interviews were conducted, involving participants aged between 31 and 79 years. It was seven men and one woman. Five of the patients had leg or foot ulcers, and the other three had pressure ulcers. All participants were carriers of one or more multidrug-resistant bacteria. The specific types of multidrug-resistant bacteria identified among the participants included MRSA, ESBL, Carbapenemase-producing Enterobacteriaceae (ESBL-CARBA), and Vancomycin-resistant Enterococci (VRE). The analysis revealed two main themes: “Response from the surroundings” and “Carriership of multidrug-resistant bacteria affects the surroundings.” The sub-themes associated with the main theme “Response from the surroundings” included: Response to healthcare; Treatment from family and friends; and Treatment from others in society. The sub-themes for “Carriership of multidrug-resistant bacteria affects the surroundings” were: Overconsumption of protective equipment; Responsibility of carriers towards their surroundings; and Society’s responsibility for information about multidrug-resistant bacteria (Table 1 ). Table 1 Overview of the results Theme Subtheme Response from the surroundings Response to healthcare Treatment from family and friends Treatment from others in society Carriership of multidrug-resistant bacteria affects the surroundings Overconsumption of protective equipment Responsibility of carriers towards their surroundings Society’s responsibility for information about multidrug-resistant bacteria Main theme: Response from the surroundings Response to healthcare Study participants reported that they were contacted by a specialist clinic for patients infected with MRSA for a scheduled physical visit. Before the visit, they received an information brochure about MRSA sent to their home address. During the visit, they received information, guidelines, and underwent testing. Participants mentioned that they were treated with understanding and received reassuring messages when needed. They were informed about their carrier status, and a plan was established for future testing to eventually clear the carrier status after repeated negative test results. Participants expressed concerns that people might be afraid to be near them and that no one would want or dare to touch them due to the infection. They were surprised that the healthcare staff did not treat them differently despite their MRSA carrier status. But when I got there, they behaved as usual and almost said, ‘Oh, we just put on gloves, it’s nothing strange’… Participants described being very satisfied with the visit and appreciated the opportunity to ask questions if they had any. They also mentioned receiving support from the ward staff when questions about their carrier status arose. Several participants reported positive experiences with their dentists, who appreciated being informed about the carrier status. It was noted that an examination was canceled during a hospital stay because the participant was a carrier of a multidrug-resistant bacterium. The examination was scheduled for midday, but since the entire room needed to be cleaned after the visit, it did not fit into the facility’s schedule. Therefore, the examination was canceled and not rescheduled. During a hospital admission, one participant was told by the staff that the carrier status created a burden because other patients in the ward needed to be tested as they were in the same ward. The participant found this distressing to hear. … when we heard that you were coming and you had MRSA, everyone was like NOOO! Because then we must test all our patients… Participants reported hearing people warning each other not to enter the room where the participant was due to carriership. There were also instances where staff stood in the room whispering to each other about the participant’s carrier status and how to proceed, whether to stay or leave the room. The results showed different perspectives on how this was received. Some participants became angry and spoke up, while others, who had been carriers for a long time, were used to this type of treatment and did not take offense. Participants mentioned that they did not receive information about their carrier status despite repeated inquiries. This led to the participant stopping asking and instead not caring about their carrier status and what it entailed. …everyone just brushed it off, no one cared to give me more information about this… Eventually, I gave up. Yes, I have stopped. I can no longer deal with no one saying anything. Treatment from family and friends There were mixed opinions about disclosing the infection to people who did not work in healthcare. The majority informed their families and friends about the carriership, while others did not. The main reasons for not disclosing were that participants did not want to worry their relatives, believed that friends would not understand the implications, or felt that their carrier status was private. Most of those who disclosed did so openly to people they met, and some even wrote about it on social media. The interviews revealed that it could be challenging to form new relationships and meet, for example, a new partner, as the carrier would need to disclose their status. However, this was seen as necessary, as participants felt that not informing a new partner would be akin to lying and withholding the truth. Participants reported that their families did not have negative reactions when informed. By being open about their carrier status, it was found that more people in their surroundings were also carriers. Not all friends fully understood what it meant, and some simply acknowledged the information without further concern. I have… I am very clear about it on Facebook and so on. But then, not everyone really understands what it is. Oh, do you have that? Treatment from others in society Some participants reported that they had not received any reactions from people in their surroundings regarding their carrier status of multidrug-resistant bacteria, and that no significant attention was paid to their carrier status. No, this… it seems to be quite harmless. No one… pays any… significant attention to it. At the same time, other participants described feeling like an alien. They mentioned that there was a fear of multidrug-resistant bacteria, and that ignorance might be a factor behind this fear. The fear was compared to the outbreak of the COVID-19 pandemic, where no one knew anything about the new virus, people got sick and died, and there was a fear of getting infected oneself. Other participants believed that the people around them were likely knowledgeable about multidrug-resistant bacteria and that there was no ignorance on the subject. Main theme: Carriership of multidrug-resistant bacteria affects the surroundings Overconsumption of protective equipment The study showed that individuals carrying multidrug-resistant bacteria with wounds felt there was an overuse of protective equipment. Sometimes, staff wore double gloves, masks, and even full protective suits. Initially, there was a lot of discussion about protective equipment, but over time, this discussion decreased. This led participants to describe a feeling of being plague infected. Participants reported that protective equipment was used in various and sometimes incorrect ways. For example, home care staff would put on gloves just to make coffee. It was noted that it was often the same staff members who used protective equipment incorrectly. The use of long-sleeved gowns, masks, visors, and gloves was questioned, and when asked if it was due to the ongoing COVID-19 pandemic, the response was hesitant and negative. … why are you wearing protective clothing? Yes, we have to. Oh, is it because of COVID? Well, sort of, but not really. However, the result also showed that the use of protective equipment by staff was not always perceived negatively. Because healthcare staff wore protective equipment, participants felt more secure than if the staff had not used it. This way, participants did not have to worry about infecting the staff with the bacteria they carried, nor did they fear being infected by the staff. Responsibility of carriers towards their surroundings The interviews revealed that the majority of participants did not know which type of multidrug-resistant bacteria they were carriers of. When the name of the bacteria was mentioned, they recognized it and responded affirmatively to the question. Some were unaware of their carrier status altogether, did not understand the question, and denied having received any information about it. …and multidrug-resistant bacteria is something no one has ever told me about. Never expressed it that way. It also emerged that there was a lack of knowledge about the existence of different types of multidrug-resistant bacteria and what it means to be a carrier of one. Some participants denied having received guidelines despite carrying a communicable disease regulated under the Communicable Diseases Act. There was an understanding of where the infection was located, but the wound was seen as more central than the infection itself. One participant told everyone he was in contact with that he had a wound with visible bone and mentioned that he had flesh-eating bacteria, believing it to be MRSA. The reactions were that people found it disgusting because the wound was so deep that the bone was visible, leading to the amputation of the toe. Other participants also mentioned flesh-eating bacteria when discussing multidrug-resistant bacteria. One question that arose was whether the participant should continue taking antibiotics until MRSA was cleared. Society’s responsibility for information about multidrug-resistant bacteria Study participants reported that they closely follow media reports and consider media an important information channel. The internet was also a key source of information, especially after participants were informed of their carrier status. The information channels used included Google for general searches, which often led to information on 1177.se (official Health care guide in Sweden) and the free encyclopedia Wikipedia. …when you search generally, you easily end up on 1177… But I always try to make sure I get to Wikipedia as well. Because… there are always different perspectives on things. Several participants mentioned media reporting in newspapers on the subject. The reporting was perceived as predominantly negative and sometimes frightening. Participants described it as exaggerated, noting that while there are cases in Sweden, it is not as widespread as it might seem. There was also a perception that multidrug-resistant bacteria were the same as Group A Streptococcus, referred to by participants as “killer bacteria.” Discussion This study explores the experiences of individuals with open wounds who are carriers with various types of multidrug-resistant bacteria, focusing on how they perceive and are treated by those around them as a result of their carriership. It delves into the social dynamics and interactions these individuals face, examining both positive and negative responses from family, friends, healthcare providers, and the broader community. The study sheds light on the emotional and psychological impact of being a carrier of multidrug-resistant bacteria while having risk factors as a wound, highlighting issues such as stigma, support, and the overall awareness and understanding of such infections within society. The study results indicated that most participants felt they received good treatment from their surroundings. However, there were isolated instances where participants felt they had been treated negatively. The study found an unexpected result that did not align with previous studies. Andersson et al. [ 7 ] previously described those individuals carrying multidrug-resistant bacteria experience shame and guilt. This was not found in the current study, but an important difference was that some participants were unaware of their carrier status. Similarly, the interpretations of the material showed a lack of knowledge about multidrug-resistant bacteria and what it entails, also described in the study by Baron et al [ 14 ]. The majority of participants did not know which multidrug-resistant bacteria they were carriers of; they knew it was something but not more. The study also showed that there were knowledge gaps among participants about what antibiotic resistance is and that there were guidelines to follow to reduce the spread of bacteria. Not following these guidelines is a violation of the Communicable Diseases Act. It is important that all individuals with a notation in their medical records know they are carriers and understand how to manage their carrier status. The participants stated that they experienced that people around them did not seem to have any reaction to the carrier status, neither positive nor negative. Participants who openly shared their status encountered some ignorance, while others chose not to disclose it because they did not believe others would understand. There was no fear of social rejection, as mentioned in previous studies [ 7 , 9 , 14 ]. McParland et al. [ 15 ] write that there are low levels of knowledge and understanding about antimicrobial resistance in the population and that there are misconceptions about what it entails. This contributes to the increased spread of multidrug-resistant bacteria. Mazińska [ 16 ] states that results from several countries, including Sweden, show that there is public uncertainty about the differences between bacteria and viruses and whether antibiotics can cure viral infections. Participants who knew for certain which bacteria they were carriers of were those who had experienced the feeling of being plague-infected, as noted in previous research [ 9 , 14 ]. Previous studies indicate that healthcare personnel do not treat individuals carrying multidrug-resistant bacteria well [ 6 – 8 ]. This study revealed that the majority of individuals carrying multidrug-resistant bacteria felt they had received good treatment from healthcare providers. Participants generally reported positive interactions with medical staff, who treated them with respect and understanding. However, there were isolated instances where the treatment was less than satisfactory. For example, one participant recounted an experience where their scheduled examination was canceled solely because they were a carrier of a multidrug-resistant bacterium. This incident highlights the occasional lapses in the otherwise commendable care provided by healthcare professionals. Such experiences underscore the need for consistent and equitable treatment for all patients, regardless of their infection status, to ensure that no one feels marginalized or neglected due to their health condition. Several participants reported seeking information about the bacteria on the internet after being informed of their carrier status, particularly those not connected to a specialist clinic for further monitoring. The most commonly used sites were 1177.se and the free encyclopedia Wikipedia. Participants expressed a desire to read about different perspectives, noting that these platforms provided varied viewpoints. Others mentioned that they or their relatives searched for information online using Google. The internet is a crucial source for disseminating health information, which can significantly influence people’s health behaviors. Wikipedia is one of the most visited databases for information, with an average of 830 million visits per month globally, and 93 percent of clicks on Wikipedia coming from Google [ 17 ]. In the USA, up to 50 percent of all adults seek health information via online services. However, since Wikipedia documents are open to editing by anyone and are never considered fully edited, healthcare personnel often view the source as unreliable [ 18 ], leading to general caution in its use [ 17 ]. Given the public’s reliance on Wikipedia for health information, it is in the public interest to improve the quality of this information [ 18 ]. Health websites on the internet play a significant role in raising public awareness. This is important to consider when using educational tools. Public education campaigns are crucial for increasing knowledge about antibiotic resistance. To be effective, these campaigns must understand the target audience and be regularly evaluated. Campaigns conducted through TV and radio advertisements and printed media have been shown to improve antibiotic use and attitudes [ 16 ]. Also, in the study of Wiklund et al. [ 8 ] the patients turned to the internet to seek information regarding their carriership when experience the received information from their doctors to be insufficient. Limitations While the small sample size might be seen as a limitation in terms of generalizability, qualitative research aims to explain and understand the phenomenon of interest rather than generalize findings to a larger population. Instead of generalizability, the concept of transferability is used. Transferability refers to the extent to which the findings can be applied to other settings and groups, which is ultimately up to the reader to determine. To support this, we have provided a detailed description of the context and participants, along with relevant quotations, following the recommendations of Graneheim et al. [ 10 ]. Additionally, analyzing the interviews and conducting further interviews until reaching data saturation enhances the rigor of the study and ensures that a sufficient number of participants are included. Conclusion Most study participants felt they were treated well or did not receive any reaction from their surroundings. However, there were isolated instances where their multidrug-resistant status affected the way they were treated. There is a lack of knowledge both among individuals carrying multidrug-resistant bacteria and those around them, including health care personnel. This lack of knowledge fosters fear and can influence how people are treated, therefor it is important to also enhance the knowledge in the general population and improve the information in public channels. Abbreviations COVID-19: Coronavirus disease of 2019 ESBL: Extended-Spectrum Beta-Lactamases ESBL-CARBA: Carbapenemase-producing Enterobacteriaceae MRSA: Methicillin-resistant Staphylococcus aureus VRE: Vancomycin-resistant Enterococci Declarations Ethical declarations Ethics approval and consent to participate The Swedish Ethical Review Authority (Dnr 2021–03886) approved the study, and patients provided their informed written consent. Consent for publication Not applicable Competing interests The authors declare that they have no competing interests. Funding This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. Authors' contributions All authors designed the study and developed the interview guide, KN conducted participant recruitment, performed the interviews and transcribed the data. KN and AF analyzed the data. KC contributed to the interpretation of findings and provided critical feedback on the manuscript. All authors read and approved the final version of the manuscript. Acknowledgements We thank the participants for their contribution in this study. Availability of data and materials The dataset produced and examined in this study is not publicly accessible to protect individual privacy. However, it can be obtained from the corresponding author upon reasonable request. References Antimicrobial Resistance Collaborators. Global burden of bacterial antimicrobial resistance in 2019: a systematic analysis. Lancet. 2022;399(10325):629–655. https://doi.org/10.1016/S0140-6736(21)02724-0 Felanga V, editor. Text atlas of wound management. 2nd ed. Informa Healthcare; 2012. Fukuta Y, Cunningham CA, Harris PL, Wagener MM, Muder RR. Identifying the risk factors for hospital-acquired methicillin-resistant Staphylococcus aureus (MRSA) infection among patients colonized with MRSA on admission. 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J Med Internet Res. 2019;21(3):e12450. https://doi.org/10.2196/12450 Additional Declarations No competing interests reported. Supplementary Files Suppl1Interviewguide.pdf Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7486214","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":534151285,"identity":"f345f1be-fa86-4722-bfe9-7c802432bdad","order_by":0,"name":"Karin NELSON","email":"","orcid":"","institution":"Stockholm County Council","correspondingAuthor":false,"prefix":"","firstName":"Karin","middleName":"","lastName":"NELSON","suffix":""},{"id":534151286,"identity":"ca67ed84-583b-4654-aecd-10329373c7c6","order_by":1,"name":"Kristina CARLÉN","email":"","orcid":"","institution":"University of 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07:53:22","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7486214/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7486214/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":94470864,"identity":"b767fa76-dca4-46db-bb68-2f606d19b4a8","added_by":"auto","created_at":"2025-10-27 15:34:26","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":37497,"visible":true,"origin":"","legend":"","description":"","filename":"ManuscriptmainBMCPHrevised2.docx","url":"https://assets-eu.researchsquare.com/files/rs-7486214/v1/dd0ab8df1d6749e4ed6f0f9d.docx"},{"id":94470897,"identity":"820f897b-5967-4c0c-85f6-b74aea8aea08","added_by":"auto","created_at":"2025-10-27 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15:34:50","extension":"html","order_by":5,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":81978,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-7486214/v1/635646734547d6eb48940f75.html"},{"id":96880332,"identity":"8e611a90-7b55-4499-bef4-e95b901cd2eb","added_by":"auto","created_at":"2025-11-27 06:53:56","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":356206,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7486214/v1/ac052cab-5ab2-42c6-a9ac-f603b9e969a9.pdf"},{"id":94470756,"identity":"2f8e5d43-7ec0-4769-ba17-02e8ef3d743f","added_by":"auto","created_at":"2025-10-27 15:33:45","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":54554,"visible":true,"origin":"","legend":"","description":"","filename":"Suppl1Interviewguide.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7486214/v1/2671ed265d02fedac9b3e9ec.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"“Navigating Healthcare and Social Interactions: The Impact of Multidrug-Resistant Bacteria on Wound Patients”– a qualitative study","fulltext":[{"header":"Background","content":"\u003cp\u003eMultidrug-resistant bacteria are bacteria that have developed resistance to antibiotics. Overuse of antibiotics, such as using them for incorrect indications or purchasing them without a prescription, promotes bacterial resistance. These bacteria spread further due to poor hygiene practices in healthcare and animal husbandry, and through global travel and transport. The number of people carrying multidrug-resistant bacteria is increasing worldwide [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eThe skin serves as a powerful barrier protecting underlying tissues and is colonized by microorganisms that typically do not multiply. However, if the skin is damaged or altered by disease, these microorganisms can establish themselves in the wound and cause infection. The risk of infection depends on the type of infection and the extent of tissue damage [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eHaving an open wound poses as a major risk factor for acquiring a multidrug-resistant bacteria infection and also being in risk of infecting others [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eA wound is an injury that disrupts the skin’s normal physiology, and wound healing is the process by which the body attempts to restore the skin and its functions [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. While ulcers can heal within a few weeks, they can also be difficult to heal and long-lasting. Hard-to-heal wounds are defined as ulcers that have not healed without complications within six weeks. All wounds have the potential to become hard-to-heal and the prevalence is raising. The primary goal is rapid wound healing, balanced with the patient’s well-being, available resources, and costs. Evidence-based wound treatment can improve healing outcomes. Dressings must be changed according to the wound and the patient’s condition. Difficult-to-heal wounds require frequent care and dressing changes to promote healing [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eWhile antibiotics are commonly used to treat wound infections, their overuse or misuse can lead to antibiotic resistance, making infections harder to treat in the future. Additionally, antibiotics may not always reach the source of the wound infection effectively, and their use should be combined with appropriate wound care practices such as debridement and proper wound cleaning [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eStudies have shown that people carriers of multidrug-resistant bacteria, such as Methicillin-resistant Staphylococcus aureus (MRSA) and Extended-Spectrum Beta-Lactamases (ESBL) often feel that healthcare staff lack knowledge and do not always treat them well [\u003cspan additionalcitationids=\"CR7 CR8\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e–\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Participants with MRSA described feeling like they were “plague-infected” [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e] or affected by a contagious disease such as leprosy [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. Some were shocked upon learning of their infection, while others did not believe the infection was contagious or harmful. Questions arose about whether they could continue working, if the infection would lead to early death, or if the bacteria were hereditary [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Some accepted their situation, while others hoped for a cure [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e].\u003c/p\u003e\u003cp\u003ePrevious studies on living with a carriership or infection of multidrug-resistant bacteria have not always clarified whether participants had risk factors. This study focuses on a specific patient group since having a wound increases the risk of infection and the spread of infection through leaking bandages or improper wound care.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eThis study aims to describe how people with wounds carrying multidrug-resistant bacteria experience the response from their surroundings due to their carriership.\u003c/p\u003e\u003cp\u003eDesign\u003c/p\u003e\u003cp\u003eThis study has a qualitative design using an inductive approach [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e–\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. This study was conducted in accordance with the COREQ criteria.\u003c/p\u003e\u003cp\u003eParticipants and setting\u003c/p\u003e\u003cp\u003eThe participants were recruited using a strategic sampling technique as described by Patton [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. This method was employed to ensure a diverse and representative sample from an outpatient clinic in Sweden that specializes in treating hard-to-heal wounds. The healthcare personnel at the clinic, who were directly involved in treating these patients, identified, and approached potential participants for the study. This approach ensured that the selected participants were well-suited to provide valuable insights into the study's focus on wound care and multidrug-resistant bacterial infections.\u003c/p\u003e\u003cp\u003eThe inclusion criteria for the study were specific: participants had to be over 18 years old, have an ulcer, and be carriers of one or more multidrug-resistant bacteria. Additionally, they needed to be Swedish-speaking and cognitively adequate to ensure they could fully understand and engage with the study requirements.\u003c/p\u003e\u003cp\u003eData collection\u003c/p\u003e\u003cp\u003eEligible patients were initially provided with brief information about the study during their visit to the clinic. They were then asked to give their consent to be contacted by the research team. Approximately one week later, a researcher reached out to the patients by telephone to confirm their willingness to participate in the study. If the patients agreed, a convenient time and location for the interview were arranged according to their preferences.\u003c/p\u003e\u003cp\u003eThe semi-structured interviews were conducted using an interview guide developed by the research group. To ensure the guide’s effectiveness, two pilot interviews were initially performed. These pilot interviews were subsequently reviewed by the research group, who deemed the interview guide relevant and comprehensive. As a result, the pilot interviews were included in the final analysis.\u003c/p\u003e\u003cp\u003eEach interview lasted approximately 20 minutes. During the interviews, participants were asked a series of open-ended questions designed to elicit detailed responses about their experiences. The interviews were digitally recorded to ensure accuracy and were later transcribed verbatim for thorough analysis.\u003c/p\u003e\u003ch2\u003eData analysis\u003c/h2\u003e\u003cp\u003eThe interviews were analyzed using content analysis inspired by Graneheim and Lundman [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e], with a focus on latent content. Initially, the entire transcribed interviews were read to gain an overview and a sense of the whole text, with each interview considered a unit of analysis. In the next step, meaning units that aligned with the study’s aim were extracted. Each meaning unit was labeled with a code and analyzed for similarities and differences, then sorted into sub-themes. From these sub-themes, main themes were identified (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). The results of the analysis were discussed within the research group until a consensus on interpretation was reached.\u003c/p\u003e\u003cp\u003eInitially, six interviews were conducted and analyzed. After performing and analyzing two additional interviews, no new information emerged, leading the research group to conclude that data saturation had been achieved [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. Selected quotes were translated from Swedish to English. When participants paused during their responses, this is indicated with “…” in the quotations.\u003c/p\u003e\u003cp\u003eEthical considerations\u003c/p\u003e\u003cp\u003e The study was conducted in accordance with good clinical practice guidelines and the principles outlined in the Declaration of Helsinki. It received approval from the Swedish Ethical Review Authority (Dnr 2021–03886).\u003c/p\u003e\u003cp\u003eRigor\u003c/p\u003e\u003cp\u003eTo achieve trustworthiness in this study, the recommendations of Graneheim et al. [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e] were followed. Credibility was attained by carefully selecting participants with diverse experiences related to the phenomenon of interest. Transferability was enhanced by using a strategic and representative sample of the patient group. Dependability was addressed through the involvement of multiple researchers in the data analysis, reflecting on each member's pre-understanding, and discussing the analysis collectively.\u003c/p\u003e\u003cp\u003eAdditionally, the study maintained a rigorous audit trail, documenting each step of the research process, including data collection, analysis, and interpretation. This transparency allows for the replication of the study and provides a clear pathway for others to follow, further enhancing the trustworthiness of the findings.\u003c/p\u003e"},{"header":"Findings","content":"\u003cp\u003eA total of eight interviews were conducted, involving participants aged between 31 and 79 years. It was seven men and one woman. Five of the patients had leg or foot ulcers, and the other three had pressure ulcers. All participants were carriers of one or more multidrug-resistant bacteria. The specific types of multidrug-resistant bacteria identified among the participants included MRSA, ESBL, Carbapenemase-producing Enterobacteriaceae (ESBL-CARBA), and Vancomycin-resistant Enterococci (VRE).\u003c/p\u003e\u003cp\u003eThe analysis revealed two main themes: “Response from the surroundings” and “Carriership of multidrug-resistant bacteria affects the surroundings.” The sub-themes associated with the main theme “Response from the surroundings” included: Response to healthcare; Treatment from family and friends; and Treatment from others in society. The sub-themes for “Carriership of multidrug-resistant bacteria affects the surroundings” were: Overconsumption of protective equipment; Responsibility of carriers towards their surroundings; and Society’s responsibility for information about multidrug-resistant bacteria (Table \u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e\u003cdiv class=\"gridtable\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eOverview of the results\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"2\"\u003e\u003c/colgroup\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTheme\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSubtheme\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e\u003cp\u003eResponse from the surroundings\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eResponse to healthcare\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eTreatment from family and friends\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eTreatment from others in society\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e\u003cp\u003eCarriership of multidrug-resistant bacteria affects the surroundings\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eOverconsumption of protective equipment\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eResponsibility of carriers towards their surroundings\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSociety’s responsibility for information about multidrug-resistant bacteria\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/table\u003e\u003c/div\u003e\u003cp\u003eMain theme: Response from the surroundings\u003c/p\u003e\n\u003cp\u003eResponse to healthcare\u003c/p\u003e\u003cp\u003eStudy participants reported that they were contacted by a specialist clinic for patients infected with MRSA for a scheduled physical visit. Before the visit, they received an information brochure about MRSA sent to their home address. During the visit, they received information, guidelines, and underwent testing. Participants mentioned that they were treated with understanding and received reassuring messages when needed. They were informed about their carrier status, and a plan was established for future testing to eventually clear the carrier status after repeated negative test results.\u003c/p\u003e\u003cp\u003eParticipants expressed concerns that people might be afraid to be near them and that no one would want or dare to touch them due to the infection. They were surprised that the healthcare staff did not treat them differently despite their MRSA carrier status.\u003c/p\u003e\u003cp\u003eBut when I got there, they behaved as usual and almost said, ‘Oh, we just put on gloves, it’s nothing strange’…\u003c/p\u003e\u003cp\u003e Participants described being very satisfied with the visit and appreciated the opportunity to ask questions if they had any. They also mentioned receiving support from the ward staff when questions about their carrier status arose. Several participants reported positive experiences with their dentists, who appreciated being informed about the carrier status.\u003c/p\u003e\u003cp\u003eIt was noted that an examination was canceled during a hospital stay because the participant was a carrier of a multidrug-resistant bacterium. The examination was scheduled for midday, but since the entire room needed to be cleaned after the visit, it did not fit into the facility’s schedule. Therefore, the examination was canceled and not rescheduled. During a hospital admission, one participant was told by the staff that the carrier status created a burden because other patients in the ward needed to be tested as they were in the same ward. The participant found this distressing to hear.\u003c/p\u003e\u003cp\u003e… when we heard that you were coming and you had MRSA, everyone was like NOOO! Because then we must test all our patients…\u003c/p\u003e\u003cp\u003eParticipants reported hearing people warning each other not to enter the room where the participant was due to carriership. There were also instances where staff stood in the room whispering to each other about the participant’s carrier status and how to proceed, whether to stay or leave the room. The results showed different perspectives on how this was received. Some participants became angry and spoke up, while others, who had been carriers for a long time, were used to this type of treatment and did not take offense.\u003c/p\u003e\u003cp\u003eParticipants mentioned that they did not receive information about their carrier status despite repeated inquiries. This led to the participant stopping asking and instead not caring about their carrier status and what it entailed.\u003c/p\u003e\u003cp\u003e…everyone just brushed it off, no one cared to give me more information about this… Eventually, I gave up. Yes, I have stopped. I can no longer deal with no one saying anything.\u003c/p\u003e\u003cp\u003eTreatment from family and friends\u003c/p\u003e\u003cp\u003eThere were mixed opinions about disclosing the infection to people who did not work in healthcare. The majority informed their families and friends about the carriership, while others did not. The main reasons for not disclosing were that participants did not want to worry their relatives, believed that friends would not understand the implications, or felt that their carrier status was private. Most of those who disclosed did so openly to people they met, and some even wrote about it on social media.\u003c/p\u003e\u003cp\u003eThe interviews revealed that it could be challenging to form new relationships and meet, for example, a new partner, as the carrier would need to disclose their status. However, this was seen as necessary, as participants felt that not informing a new partner would be akin to lying and withholding the truth. Participants reported that their families did not have negative reactions when informed. By being open about their carrier status, it was found that more people in their surroundings were also carriers. Not all friends fully understood what it meant, and some simply acknowledged the information without further concern.\u003c/p\u003e\u003cp\u003eI have… I am very clear about it on Facebook and so on. But then, not everyone really understands what it is. Oh, do you have that?\u003c/p\u003e\u003cp\u003eTreatment from others in society\u003c/p\u003e\u003cp\u003eSome participants reported that they had not received any reactions from people in their surroundings regarding their carrier status of multidrug-resistant bacteria, and that no significant attention was paid to their carrier status.\u003c/p\u003e\u003cp\u003eNo, this… it seems to be quite harmless. No one… pays any… significant attention to it.\u003c/p\u003e\u003cp\u003e At the same time, other participants described feeling like an alien. They mentioned that there was a fear of multidrug-resistant bacteria, and that ignorance might be a factor behind this fear. The fear was compared to the outbreak of the COVID-19 pandemic, where no one knew anything about the new virus, people got sick and died, and there was a fear of getting infected oneself. Other participants believed that the people around them were likely knowledgeable about multidrug-resistant bacteria and that there was no ignorance on the subject.\u003c/p\u003e\u003cp\u003eMain theme: Carriership of multidrug-resistant bacteria affects the surroundings\u003c/p\u003e\u003cp\u003eOverconsumption of protective equipment\u003c/p\u003e\u003cp\u003eThe study showed that individuals carrying multidrug-resistant bacteria with wounds felt there was an overuse of protective equipment. Sometimes, staff wore double gloves, masks, and even full protective suits. Initially, there was a lot of discussion about protective equipment, but over time, this discussion decreased. This led participants to describe a feeling of being plague infected. Participants reported that protective equipment was used in various and sometimes incorrect ways. For example, home care staff would put on gloves just to make coffee. It was noted that it was often the same staff members who used protective equipment incorrectly. The use of long-sleeved gowns, masks, visors, and gloves was questioned, and when asked if it was due to the ongoing COVID-19 pandemic, the response was hesitant and negative.\u003c/p\u003e\u003cp\u003e… why are you wearing protective clothing? Yes, we have to. Oh, is it because of COVID? Well, sort of, but not really.\u003c/p\u003e\u003cp\u003eHowever, the result also showed that the use of protective equipment by staff was not always perceived negatively. Because healthcare staff wore protective equipment, participants felt more secure than if the staff had not used it. This way, participants did not have to worry about infecting the staff with the bacteria they carried, nor did they fear being infected by the staff.\u003c/p\u003e\u003cp\u003eResponsibility of carriers towards their surroundings\u003c/p\u003e\u003cp\u003eThe interviews revealed that the majority of participants did not know which type of multidrug-resistant bacteria they were carriers of. When the name of the bacteria was mentioned, they recognized it and responded affirmatively to the question. Some were unaware of their carrier status altogether, did not understand the question, and denied having received any information about it.\u003c/p\u003e\u003cp\u003e…and multidrug-resistant bacteria is something no one has ever told me about. Never expressed it that way.\u003c/p\u003e\u003cp\u003eIt also emerged that there was a lack of knowledge about the existence of different types of multidrug-resistant bacteria and what it means to be a carrier of one. Some participants denied having received guidelines despite carrying a communicable disease regulated under the Communicable Diseases Act. There was an understanding of where the infection was located, but the wound was seen as more central than the infection itself. One participant told everyone he was in contact with that he had a wound with visible bone and mentioned that he had flesh-eating bacteria, believing it to be MRSA. The reactions were that people found it disgusting because the wound was so deep that the bone was visible, leading to the amputation of the toe. Other participants also mentioned flesh-eating bacteria when discussing multidrug-resistant bacteria. One question that arose was whether the participant should continue taking antibiotics until MRSA was cleared.\u003c/p\u003e\u003cp\u003eSociety’s responsibility for information about multidrug-resistant bacteria\u003c/p\u003e\u003cp\u003eStudy participants reported that they closely follow media reports and consider media an important information channel. The internet was also a key source of information, especially after participants were informed of their carrier status. The information channels used included Google for general searches, which often led to information on 1177.se (official Health care guide in Sweden) and the free encyclopedia Wikipedia.\u003c/p\u003e\u003cp\u003e…when you search generally, you easily end up on 1177… But I always try to make sure I get to Wikipedia as well. Because… there are always different perspectives on things.\u003c/p\u003e\u003cp\u003eSeveral participants mentioned media reporting in newspapers on the subject. The reporting was perceived as predominantly negative and sometimes frightening. Participants described it as exaggerated, noting that while there are cases in Sweden, it is not as widespread as it might seem. There was also a perception that multidrug-resistant bacteria were the same as Group A Streptococcus, referred to by participants as “killer bacteria.”\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study explores the experiences of individuals with open wounds who are carriers with various types of multidrug-resistant bacteria, focusing on how they perceive and are treated by those around them as a result of their carriership. It delves into the social dynamics and interactions these individuals face, examining both positive and negative responses from family, friends, healthcare providers, and the broader community. The study sheds light on the emotional and psychological impact of being a carrier of multidrug-resistant bacteria while having risk factors as a wound, highlighting issues such as stigma, support, and the overall awareness and understanding of such infections within society. The study results indicated that most participants felt they received good treatment from their surroundings. However, there were isolated instances where participants felt they had been treated negatively.\u003c/p\u003e\u003cp\u003eThe study found an unexpected result that did not align with previous studies. Andersson et al. [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e] previously described those individuals carrying multidrug-resistant bacteria experience shame and guilt. This was not found in the current study, but an important difference was that some participants were unaware of their carrier status. Similarly, the interpretations of the material showed a lack of knowledge about multidrug-resistant bacteria and what it entails, also described in the study by Baron et al [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eThe majority of participants did not know which multidrug-resistant bacteria they were carriers of; they knew it was something but not more. The study also showed that there were knowledge gaps among participants about what antibiotic resistance is and that there were guidelines to follow to reduce the spread of bacteria. Not following these guidelines is a violation of the Communicable Diseases Act. It is important that all individuals with a notation in their medical records know they are carriers and understand how to manage their carrier status. The participants stated that they experienced that people around them did not seem to have any reaction to the carrier status, neither positive nor negative. Participants who openly shared their status encountered some ignorance, while others chose not to disclose it because they did not believe others would understand. There was no fear of social rejection, as mentioned in previous studies [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eMcParland et al. [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e] write that there are low levels of knowledge and understanding about antimicrobial resistance in the population and that there are misconceptions about what it entails. This contributes to the increased spread of multidrug-resistant bacteria. Mazińska [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e] states that results from several countries, including Sweden, show that there is public uncertainty about the differences between bacteria and viruses and whether antibiotics can cure viral infections. Participants who knew for certain which bacteria they were carriers of were those who had experienced the feeling of being plague-infected, as noted in previous research [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. Previous studies indicate that healthcare personnel do not treat individuals carrying multidrug-resistant bacteria well [\u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. This study revealed that the majority of individuals carrying multidrug-resistant bacteria felt they had received good treatment from healthcare providers. Participants generally reported positive interactions with medical staff, who treated them with respect and understanding. However, there were isolated instances where the treatment was less than satisfactory. For example, one participant recounted an experience where their scheduled examination was canceled solely because they were a carrier of a multidrug-resistant bacterium. This incident highlights the occasional lapses in the otherwise commendable care provided by healthcare professionals. Such experiences underscore the need for consistent and equitable treatment for all patients, regardless of their infection status, to ensure that no one feels marginalized or neglected due to their health condition.\u003c/p\u003e\u003cp\u003eSeveral participants reported seeking information about the bacteria on the internet after being informed of their carrier status, particularly those not connected to a specialist clinic for further monitoring. The most commonly used sites were 1177.se and the free encyclopedia Wikipedia. Participants expressed a desire to read about different perspectives, noting that these platforms provided varied viewpoints. Others mentioned that they or their relatives searched for information online using Google. The internet is a crucial source for disseminating health information, which can significantly influence people\u0026rsquo;s health behaviors. Wikipedia is one of the most visited databases for information, with an average of 830\u0026nbsp;million visits per month globally, and 93 percent of clicks on Wikipedia coming from Google [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. In the USA, up to 50 percent of all adults seek health information via online services. However, since Wikipedia documents are open to editing by anyone and are never considered fully edited, healthcare personnel often view the source as unreliable [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e], leading to general caution in its use [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. Given the public\u0026rsquo;s reliance on Wikipedia for health information, it is in the public interest to improve the quality of this information [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. Health websites on the internet play a significant role in raising public awareness. This is important to consider when using educational tools. Public education campaigns are crucial for increasing knowledge about antibiotic resistance. To be effective, these campaigns must understand the target audience and be regularly evaluated. Campaigns conducted through TV and radio advertisements and printed media have been shown to improve antibiotic use and attitudes [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. Also, in the study of Wiklund et al. [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e] the patients turned to the internet to seek information regarding their carriership when experience the received information from their doctors to be insufficient.\u003c/p\u003e\u003cp\u003eLimitations\u003c/p\u003e\u003cp\u003eWhile the small sample size might be seen as a limitation in terms of generalizability, qualitative research aims to explain and understand the phenomenon of interest rather than generalize findings to a larger population. Instead of generalizability, the concept of transferability is used. Transferability refers to the extent to which the findings can be applied to other settings and groups, which is ultimately up to the reader to determine. To support this, we have provided a detailed description of the context and participants, along with relevant quotations, following the recommendations of Graneheim et al. [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Additionally, analyzing the interviews and conducting further interviews until reaching data saturation enhances the rigor of the study and ensures that a sufficient number of participants are included.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eMost study participants felt they were treated well or did not receive any reaction from their surroundings. However, there were isolated instances where their multidrug-resistant status affected the way they were treated. There is a lack of knowledge both among individuals carrying multidrug-resistant bacteria and those around them, including health care personnel. This lack of knowledge fosters fear and can influence how people are treated, therefor it is important to also enhance the knowledge in the general population and improve the information in public channels.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eCOVID-19: Coronavirus disease of 2019\u003c/p\u003e\n\u003cp\u003eESBL: Extended-Spectrum Beta-Lactamases\u003c/p\u003e\n\u003cp\u003eESBL-CARBA: Carbapenemase-producing Enterobacteriaceae \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMRSA: Methicillin-resistant Staphylococcus aureus\u003c/p\u003e\n\u003cp\u003eVRE: Vancomycin-resistant Enterococci\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eEthical declarations\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eEthics approval and consent to participate\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe Swedish Ethical Review Authority (Dnr 2021\u0026ndash;03886) approved the study, and patients provided their informed written consent.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConsent for publication\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eCompeting interests\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003eFunding\u003c/p\u003e\n\u003cp\u003eThis research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.\u003c/p\u003e\n\u003cp\u003eAuthors\u0026apos; contributions\u003c/p\u003e\n\u003cp\u003eAll authors designed the study and developed the interview guide, KN conducted participant recruitment, performed the interviews and transcribed the data. KN and AF analyzed the data. KC contributed to the interpretation of findings and provided critical feedback on the manuscript. All authors read and approved the final version of the manuscript.\u003c/p\u003e\n\u003cp\u003eAcknowledgements\u003c/p\u003e\n\u003cp\u003eWe thank the participants for their contribution in this study.\u003c/p\u003e\n\u003cp\u003eAvailability of data and materials\u003c/p\u003e\n\u003cp\u003eThe dataset produced and examined in this study is not publicly accessible to protect individual privacy. However, it can be obtained from the corresponding author upon reasonable request.\u003c/p\u003e\n"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eAntimicrobial Resistance Collaborators. Global burden of bacterial antimicrobial resistance in 2019: a systematic analysis. Lancet. 2022;399(10325):629\u0026ndash;655. https://doi.org/10.1016/S0140-6736(21)02724-0 \u003c/li\u003e\n\u003cli\u003eFelanga V, editor. Text atlas of wound management. 2nd ed. Informa Healthcare; 2012. \u003c/li\u003e\n\u003cli\u003eFukuta Y, Cunningham CA, Harris PL, Wagener MM, Muder RR. Identifying the risk factors for hospital-acquired methicillin-resistant Staphylococcus aureus (MRSA) infection among patients colonized with MRSA on admission. Infect Control Hosp Epidemiol. 2012;33(12):1219\u0026ndash;25. https://doi.org/10.1086/668420 \u003c/li\u003e\n\u003cli\u003eTorkington-Stokes R, Moran K, Martinez DS, Granara DC, Metcalf DG. Improving outcomes for patients with hard-to-heal wounds following adoption of the Wound Hygiene Protocol: real-world evidence. J Wound Care. 2024;33(5):304\u0026ndash;10. https://doi.org/10.12968/jowc.2024.33.5.304 \u003c/li\u003e\n\u003cli\u003e\u0026Ouml;ien RF, Roxenius J, Bostr\u0026ouml;m M, Wickstr\u0026ouml;m HL. Management and outcomes among patients with hard-to-heal ulcers in Sweden: a national mapping of data from medical records, focusing on diagnoses, ulcer healing, ulcer treatment time, pain and prescription of analgesics and antibiotics. BMJ Open. 2024;14(8):e087894. https://doi.org/10.1136/bmjopen-2024-087894 \u003c/li\u003e\n\u003cli\u003eLindberg M, Carlsson M, Skytt B. MRSA-colonized persons\u0026apos; and healthcare personnel\u0026apos;s experiences of patient-professional interactions in and responsibilities for infection prevention in Sweden. J Infect Public Health. 2014;7(5):427\u0026ndash;35. https://doi.org/10.1016/j.jiph.2014.02.004 \u003c/li\u003e\n\u003cli\u003eAndersson H, Lindholm C, Fossum B. MRSA\u0026mdash;global threat and personal disaster: patients\u0026apos; experiences. Int Nurs Rev. 2011;58(1):47\u0026ndash;53. https://doi.org/10.1111/j.1466-7657.2010.00833.x \u003c/li\u003e\n\u003cli\u003eWiklund S, \u0026Ouml;rtqvist \u0026Aring;, Berlin A, Stamm C, Broliden K. Experiences and consequences of living with extended-spectrum \u0026beta;-lactamase-producing bacteria: A qualitative study. Am J Infect Control. 2018;46(12):1394\u0026ndash;9. https://doi.org/10.1016/j.ajic.2018.05.014 \u003c/li\u003e\n\u003cli\u003eHamilton RA, Lond B, Wilde L, Williamson I. Understanding the lived-experience and support-needs of people living with antimicrobial resistance in the UK through interpretative phenomenological analysis. Sci Rep. 2024;14(1):3403. https://doi.org/10.1038/s41598-024-53814-6 \u003c/li\u003e\n\u003cli\u003eGraneheim UH, Lindgren BM, Lundman B. Methodological challenges in qualitative content analysis: a discussion paper. Nurse Educ Today. 2017;56:29\u0026ndash;34. https://doi.org/10.1016/j.nedt.2017.06.002 \u003c/li\u003e\n\u003cli\u003eGraneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105\u0026ndash;12. https://doi.org/10.1016/j.nedt.2003.10.001 \u003c/li\u003e\n\u003cli\u003ePatton MQ. Qualitative research and evaluation methods. 3rd ed. Sage Publications; 2002. \u003c/li\u003e\n\u003cli\u003eSaunders B, Sim J, Kingstone T, Baker S, Waterfield J, Bartlam B, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant. 2018;52(4):1893\u0026ndash;907. https://doi.org/10.1007/s11135-017-0574-8 \u003c/li\u003e\n\u003cli\u003eBaron R, Eilers R, Haverkate MR, Feenstra SG, Timen A. A qualitative study examining the impact of multidrug-resistant organism (MDRO) carriage on the daily lives of carriers and parents of carriers with experiences of hospital precautionary measures. Antimicrob Resist Infect Control. 2022;11(1):103. https://doi.org/10.1186/s13756-022-01141-8 \u003c/li\u003e\n\u003cli\u003eMcParland JL, Williams L, Gozdzielewska L, Young M, Smith F, MacDonald J, et al. What are the \u0026apos;active ingredients\u0026apos; of interventions targeting the public\u0026apos;s engagement with antimicrobial resistance and how might they work? Br J Health Psychol. 2018;23(4):804\u0026ndash;19. https://doi.org/10.1111/bjhp.12317 \u003c/li\u003e\n\u003cli\u003eMazińska B, Strużycka I, Hryniewicz W. Surveys of public knowledge and attitudes with regard to antibiotics in Poland: Did the European Antibiotic Awareness Day campaigns change attitudes? PLoS One. 2017;12(2):e0172146. https://doi.org/10.1371/journal.pone.0172146 \u003c/li\u003e\n\u003cli\u003eSmith DA. Situating Wikipedia as a health information resource in various contexts: a scoping review. PLoS One. 2020;15(2):e0228786. https://doi.org/10.1371/journal.pone.0228786 \u003c/li\u003e\n\u003cli\u003eWeiner SS, Horbacewicz J, Rasberry L, Bensinger-Brody Y. Improving the quality of consumer health information on Wikipedia: case series. J Med Internet Res. 2019;21(3):e12450. https://doi.org/10.2196/12450 \u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"public health, multidrug-resistant bacteria, ulcer, patient experience, wound infection","lastPublishedDoi":"10.21203/rs.3.rs-7486214/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7486214/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eBackground\u003c/p\u003e\n\u003cp\u003eMultidrug-resistant bacteria are a growing global health concern, fueled by antibiotic misuse and poor hygiene. Wound carriers face increased infection risks, as compromised skin becomes vulnerable to bacterial colonization. Hard-to-heal wounds require evidence-based care to minimize complications. While antibiotics aid treatment, overuse accelerates resistance. Many multidrug-resistant bacteria carriers experience stigma and inconsistent healthcare support, highlighting knowledge gaps among both patients and professionals. The aim of this study was to describe how people with wounds carrying multidrug-resistant bacteria experience the response from their surroundings.\u003c/p\u003e\n\u003cp\u003eMethods\u003c/p\u003e\n\u003cp\u003eIn this qualitative study, semi-structured interviews were performed with eight patients with wounds, aged 31 to 79 years, carrying multidrug-resistant bacteria. The participants consist of seven men and one woman, with data analyzed through content analysis. The research follows COREQ guidelines to ensure methodological rigor.\u003c/p\u003e\n\u003cp\u003eResults\u003c/p\u003e\n\u003cp\u003eThe analysis identified two overarching themes: “Response from the surroundings” and “Carriership of multidrug-resistant bacteria affects the surroundings.” The first theme encompasses sub-themes related to interactions with healthcare providers, family, friends, and broader societal responses. The second theme examines the excessive use of protective equipment, the carriers' perceived responsibility toward others, and society’s role in disseminating accurate information about multidrug-resistant bacteria.\u003c/p\u003e\n\u003cp\u003eAdditionally, the study reveals substantial knowledge gaps among participants regarding their carrier status and multidrug resistance. Many were unaware of the bacteria they carried or the appropriate management guidelines. While most reported positive experiences with healthcare professionals, some encountered inadequate treatment and stigma, emphasizing the need for consistent and informed care. Notably, the internet emerged as a key resource for health information, shaping participants’ understanding of their condition.\u003c/p\u003e\n\u003cp\u003eConclusions\u003c/p\u003e\n\u003cp\u003eThough most participants felt well-treated, some experienced negative treatment. Increasing knowledge about multidrug-resistant bacteria among carriers and the public is crucial to reducing fear and improving care quality.\u003c/p\u003e","manuscriptTitle":"“Navigating Healthcare and Social Interactions: The Impact of Multidrug-Resistant Bacteria on Wound Patients”– a qualitative study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-10-27 14:04:53","doi":"10.21203/rs.3.rs-7486214/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"6fe21efd-9870-4882-bcd9-c99c8cc1376a","owner":[],"postedDate":"October 27th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-11-27T06:53:22+00:00","versionOfRecord":[],"versionCreatedAt":"2025-10-27 14:04:53","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7486214","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7486214","identity":"rs-7486214","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}