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Understanding the patient experience of health care–associated infection: A qualitative systematic review

Published:February 03, 2018DOI:https://doi.org/10.1016/j.ajic.2017.11.023

      Highlights

      • Qualitative research synthesis of patients' experiences across different health care–associated infections (HAIs).
      • Continuum to enhance understanding of physical and emotional responses across HAIs.
      • Importance of practitioner-patient communication to minimize distress.
      • New perspectives on how contemporary understanding of contagion produces stigma.
      • Analysis of patients' HAI experiences to inform care quality improvement.

      Background

      The global burden of health care–associated infection (HAI) is well recognized; what is less well known is the impact HAI has on patients. To develop acceptable, effective interventions, greater understanding of patients' experience of HAI is needed. This qualitative systematic review sought to explore adult patients' experiences of common HAIs.

      Methods

      Five databases were searched. Search terms were combined for qualitative research, HAI terms, and patient experience. Study selection was conducted by 2 researchers using prespecified criteria. Critical Appraisal Skills Programme quality appraisal tools were used. Internationally recognized Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were applied. The Noblit and Hare (1988) approach to meta-synthesis was adopted.

      Results

      Seventeen studies (2001-2017) from 5 countries addressing 5 common types of HAI met the inclusion criteria. Four interrelated themes emerged: the continuum of physical and emotional responses, experiencing the response of health care professionals, adapting to life with an HAI, and the complex cultural context of HAI.

      Conclusions

      The impact of different HAIs may vary; however, there are many similarities in the experience recounted by patients. The biosociocultural context of contagion was graphically expressed, with potential impact on social relationships and professional interactions highlighted. Further research to investigate contemporary patient experience in an era of antimicrobial resistance is warranted.

      Key Words

      Background

      Infection or colonization of patients with a health care–associated organism causes preventable adverse clinical outcomes, additional health care costs, and personal costs to patients. In Europe, health care–associated infection (HAI) prevalence was reported at 6% for 2011-2012, which approximates to 4,100,000 patients with HAI each year.
      • European Centre for Disease Prevention and Control
      Point prevalence survey of healthcare-associated infections and antimicrobial use in European acute care hospitals 2011-2012.
      • European Centre for Disease Prevention and Control
      Annual epidemiological report 2014: antimicrobial resistance and healthcare-associated infections.
      In the United States in 2011, HAI prevalence was estimated at 4%, or 1 person in every 25 acute care patients on any given day having at least 1 HAI.
      • Magill S.S.
      • Edwards J.R.
      • Bamberg W.
      • Beldavs Z.G.
      • Dumyati G.
      • Kainer M.A.
      • et al.
      Multistate point-prevalence survey of health care-associated infections.
      International data show that HAIs are the most frequently occurring adverse event worldwide, with reports from high-income countries indicating a combined prevalence of 7.6%.
      • Allegranzi B.
      • Bagheri Nejad S.
      • Combescure C.
      • Graafmans W.
      • Attar H.
      • Donaldson L.
      Report on the burden of endemic health care-associated infection worldwide: a systematic review of the literature.
      • Allegranzi B.
      • Bagheri Nejad S.
      • Combescure C.
      • Graafmans W.
      • Attar H.
      • Donaldson L.
      • et al.
      Burden of endemic health-care-associated infection in developing countries: systematic review and meta-analysis.
      The challenges posed by HAI are particularly pressing in an era of increasing antimicrobial resistance, where identification and management of infected or colonized patients is problematic and reducing transmission of organisms between patients becomes the critical element of infection prevention and control.
      • World Health Organization
      WHO global strategy for containment of antimicrobial resistance.
      For the purposes of this article, both infection and colonization with health care–associated organisms will be referred to as an HAI.
      Despite the damaging effects and costs of HAIs, crucially, there is little knowledge of how patients and their families are affected in the immediate and longer term. Two systematic reviews related to patient experience of HAI could be located; the first
      • MacDonald P.
      Exploring patients' experiences of MRSA to help reduce HCAIs.
      is limited to 2 studies on the patient experience of methicillin-resistant Staphylococcus aureus (MRSA), and the other
      • Mutsonziwa G.A.
      • Green J.
      Colonised and isolated: a qualitative metasynthesis of patients' experiences of being infected with multiple drug resistant organisms and subsequent isolation.
      included patients with multidrug-resistant infections but focused particularly on the patients' experience of isolation. This evidence gap is important because the World Health Organization
      • World Health Organization
      WHO patient safety: making health care safer.
      and many national government organizations responsible for health care delivery have stated that patient-centered, safe, effective care is a global health priority.
      • Scottish Government
      A route map to the 2020 vision for health and social care.
      To develop acceptable, effective interventions and treatments for HAI, greater understanding of patients' experience of HAI and the impact it has on their recovery is needed. Consequently, this qualitative systematic review focuses on patient experiences of both colonization and infection from bacteria that commonly cause HAI.
      The review questions for this article are as follows: (1) What is the adult patients' experience of HAI or colonization during or after hospital admission?; (2) What is the perceived impact of infection or colonization on adult patients' daily living, family relationships, finances, and work?; and (3) How does type of infection or colonization influence adult patient experiences?

      Methods

      A protocol was developed for the review.
      • Currie K.
      • Melone L.
      • Reilly J.
      • Stewart S.A.
      The patient experience of healthcare associated infections (HCAI) during admission and post discharge: a systematic review and narrative synthesis—protocol.
      Internationally recognized quality standards—the Preferred Reporting Items for Systematic Reviews and Meta-Analyses—were used to design and conduct this systematic review.
      • Moher D.
      • Liberati A.
      • Tetzlaff J.
      • Altman D.G.
      PRISMA Group
      Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement.

      Inclusion criteria

      The PICoS as noted in Table 1 framework
      • The Joanna Briggs Institute
      Joanna Briggs Institute reviewers' manual: 2014 edition.
      was used to develop eligibility criteria (Table 1).
      Table 1
      PICoS indicatorEligibility criteria
      Population / ParticipantsAdult patients (aged over 18) who had experienced an HAI during a hospital admission.
      Indicators / phenomenon of InterestPatients' experiences of colonization and/or infection of HAI, particularly concerning patients' daily living, family relationships, finance and work situations during admission and/or post-discharge.
      ContextAny country and in any hospital, community, or patient's home setting
      Study designqualitative research designs including (but not limited to) thematic analysis, grounded theory, phenomenological analysis and mixed method studies with qualitative components.
      Exclusion criteriaStudies which focused on specific aspects of care associated with HAI, for example experience of contact isolation only or psychological impact of isolation only, were excluded.
      HAI, health care–associated infection.

      Search strategy and study selection

      A systematic search was performed using MEDLINE, CINAHL, PsycINFO, Web of Science, and Embase databases, combining general and specific HAI terms with patient experience terms (search strategy available from authors). Cochrane, Database of Abstracts of Reviews of Effects, Joanna Briggs Institute, and PROSPERO databases were searched for existing systematic reviews on the patient experience of HAI. The search was limited to studies published in English between January 2000 and May 2017. Search results were initially screened by 2 researchers for relevancy by article title and abstract, and then full-text screened against the eligibility criteria. The date of the last search was May 22, 2017.

      Quality assessment

      The quality of all included studies was assessed using criteria from the Critical Appraisal Skills Programme (CASP)
      • CASP
      Critical Appraisal Skills programme—CASP (Qualitative Research) checklist.
      qualitative appraisal tool. CASP does not specifically recommend any scoring or grading system; however, we adopted a scoring system developed by Chatfield et al
      • Chatfield S.L.
      • DeBois K.
      • Nolan R.
      • Crawford H.
      • Hallam J.S.
      Hand hygiene among healthcare workers: a qualitative meta summary using the GRADE-CERQual process.
      to generate a score of 1-20, assessed against the 10 CASP quality criteria. Where the authors did not meet the CASP criterion, a score of 0 was allocated; partial compliance scored 1; and full compliance scored 2. On this basis, and acknowledging the subjective element of quality appraisal, studies scoring ≤10 were ranked as lower quality, those scoring 11-15 were ranked as moderate quality, and those scoring 16-20 were ranked as higher quality, but none were excluded on the basis of lower quality. No CASP criterion was weighted as more important than another in terms of quality indicator. Quality appraisal involved assessment and agreement by 2 independent reviewers.

      Data extraction

      A standardized template was used to record information regarding study characteristics and summarized findings (Supplementary Appendix S1). Original qualitative data, including participant quotes and author interpretations, were extracted separately for each included study and entered onto NVivo software (QRS International, Warrington, UK) to enable meta-synthesis. Data were extracted by one reviewer and the content independently validated by a second reviewer.

      Data synthesis

      A recognized approach was used to synthesize the findings from the individual qualitative studies.
      • Noblit G.
      • Hare R.
      Meta-ethnography: synthesizing qualitative data.
      Based on an initial reading of all the findings, a preliminary set of abstracted themes was developed. These lower-order themes were then reanalyzed, taking account of the whole dataset, and were translated into the final, higher-order themes focused on patients' experiences in relation to the research questions and different types of infection or colonization (Table 2). Rigor was maintained by peer review of thematic analysis and team discussion of final interpretations.
      Table 2Main themes and associated subthemes
      ThemeAssociated subtheme
      Theme 1: Continuum of physical and emotional responses
      • I know vs they say
      • Experience of physical symptoms
      • Experience of emotional responses
      Theme 2: Experiencing the response of HCPs to HAI
      • Frustration of trying to obtain information from HCPs
      • Inconsistent use of protective measures by HCPs
      • Stigmatizing interactions
      • Impact on subsequent health care
      • Value of interactions with infection specialists
      Theme 3: Adapting to life with an HAI
      • Fear of transmission of infection
      • Impact on social relationships
      • Impact on daily activities
      • Impact on employment or financial concerns
      Theme 4: Complex cultural context of HAI
      • Social stigma of contagion
      • Uncontrolled body
      HAI, health care–associated infection; HCP, health care professional.

      Results

      Included studies

      A Preferred Reporting Items for Systematic Reviews and Meta-Analyses diagram
      • Liberati A.
      • Altman D.G.
      • Tetzlaff J.
      • Mulrow C.
      • Gøtzsche P.C.
      • Ioannidis J.P.
      • et al.
      The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate healthcare interventions: explanation and elaboration.
      of the search and study selection is presented in Figure 1.
      Fig 1
      Fig 1Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram of studies of the results of the search strategy.
      Supplementary Appendix S1 presents study characteristics and summarized findings for each included study and the category of quality appraisal.
      Studies reported data gathered in 5 countries from 2001-2017 (7 in Sweden, 6 in the United Kingdom, 3 in the United States, and 1 compared the United States and France). Both qualitative studies (n = 14) and mixed-method studies (n = 3) with qualitative data were included. Participant numbers ranged from 6-24 participants per study (total of 240 participants in review). Four studies reported patient in-hospital experience only, 4 reported postdischarge experience only, and 9 reported both in-hospital and postdischarge experience. Studies addressed either HAI or colonization with an HAI or drug-resistant organism (where this differentiation was provided by the author) and causative organism where known. This incorporated studies of MRSA (7 studies),
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      • Skyman E.
      • Bergbom I.
      • Lindahl B.
      • Larsson L.
      • Lindqvist A.
      • Thunberg Sjöström H.
      • et al.
      Notification card to alert for methicillin-resistant Staphylococcus aureus is stigmatizing from the patient's point of view.
      • Newton J.T.
      • Constable D.
      • Senior V.
      Patients' perceptions of methicillin-resistant Staphylococcus aureus and source isolation: a qualitative analysis of source-isolated patients.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      surgical site infection (SSI) (4 studies),
      • Andersson A.E.
      • Bergh I.
      • Karlsson J.
      • Nilsson K.
      Patients' experiences of acquiring a deep surgical site infection: an interview study.
      • Sanger P.C.
      • Hartzler A.
      • Han S.M.
      • Armstrong C.A.L.
      • Stewart M.R.
      • Lordon R.J.
      • et al.
      Patient perspectives on post-discharge surgical site infections: towards a patient-centered mobile health solution.
      • Tanner J.
      • Padley W.
      • Davey S.
      • Murphy K.
      • Brown B.
      Patients' experiences of surgical site infection.
      • Tanner J.
      • Padley W.
      • Davey S.
      • Murphy K.
      • Brown B.
      Patient narratives of surgical site infection: implications for practice.
      Clostridium difficile infection (CDI) (4 studies),
      • Guillemin I.
      • Marrel A.
      • Lambert J.
      • Beriot-Mathiot A.
      • Doucet C.
      • Kazoglou O.
      • et al.
      Patients' experience and perception of hospital-treated Clostridium difficile infections: a qualitative study.
      • Madeo M.
      • Boyack M.
      Using the lived experiences of patients with Clostridium difficile infection to improve care.
      • Pakyz A.L.
      • Moczygemba L.R.
      • VanderWielen L.M.
      • Edmond M.B.
      Fecal microbiota transplantation for recurrent Clostridium difficile infection: the patient experience.
      • Zellmer C.
      • De Wolfe T.
      • Van Hoof S.
      • Blakney R.
      • Safdar N.
      Patient perspectives on fecal microbiota transplantation for Clostridium difficile infection.
      S aureus bloodstream infection (1 study),
      • Burnett E.
      • Lee K.
      • Rushmer R.
      • Ellis M.
      • Noble M.
      • Davey P.
      Healthcare-associated infection and the patient experience: a qualitative study using patient interviews.
      and extended-spectrum β-lactamase (ESBL)–producing bacteria (1 study).
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      No studies reporting patient experience of carbapenemase-producing Enterobacteriaceae, an HAI of increasing global concern, were located.
      The methodologic quality of included studies varied. Common weaknesses included lack of a theoretical framework, limited methodologic positioning (ie, descriptive thematic analysis rather than conceptual interpretation of data), no mention of ethical approval, limited discussion of researcher positionality or reflexivity, limited detail on data analysis, no mention of data saturation, and limited discussion of strengths and limitations or recommendations for future research or practice.

      Results of meta-synthesis

      The first review question is addressed by 2 key themes: (1) the continuum of emotional and physical responses to HAI, and (2) experiencing the response of health care professionals (HCPs) to HAI. The impact on patients' daily lives, family, relationships, finances, and work (review question 2) are described within the third theme, adapting to life with an HAI. All of the aforementioned themes were shaped by a fourth theme, the complex cultural context of HAI. We have integrated findings which highlight similarities and differences in experiences (review question 3) throughout each of the 4 main themes. Table 2 indicates the main themes and associated subthemes. Original data extracts illustrating synthesized findings for each type of HAI are provided in Supplementary Appendix S2.

      Theme 1: Continuum of emotional and physical responses to HAI

      The emotional and physical responses of patients experiencing an HAI can be conceptualized as existing at varying points on a continuum from minimal to extreme distress. Some patients experienced significant physical symptoms and others less so; some patients demonstrated significant emotional distress because of their situation (whether or not physical symptoms were present), others less so. This is not to suggest that emotional and physical responses occurred in isolation because the interconnectedness of mind and body is acknowledged. However, positioning along this continuum was influenced by the type of HAI experienced.
      A key distinction between the infection versus colonization experience of patients can be described as the difference between “I know” (characteristic of patients with SSI and ESBL infections who know there is something very wrong but initially lack a medical diagnosis)
      • Andersson A.E.
      • Bergh I.
      • Karlsson J.
      • Nilsson K.
      Patients' experiences of acquiring a deep surgical site infection: an interview study.
      • Tanner J.
      • Padley W.
      • Davey S.
      • Murphy K.
      • Brown B.
      Patients' experiences of surgical site infection.
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      versus “they say” (typifying the experience of the patients colonized with MRSA, who lack symptoms but are given a diagnostic label by the medical professions).
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      • Newton J.T.
      • Constable D.
      • Senior V.
      Patients' perceptions of methicillin-resistant Staphylococcus aureus and source isolation: a qualitative analysis of source-isolated patients.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      Emotional responses were also influenced by the sociocultural context of infection (theme 4) and shaped by interactions with HCPs (theme 2). This continuum of emotional and physical responses is subsequently illustrated by describing the typical experience of patients with different HAIs.
      At the lower end of the physical response continuum, the experience of physical symptoms was frequently absent for patients colonized with MRSA. This made it difficult for some patients to accept there was anything wrong or to understand the need for measures to manage MRSA colonization, particularly after discharge from hospital.
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      • Newton J.T.
      • Constable D.
      • Senior V.
      Patients' perceptions of methicillin-resistant Staphylococcus aureus and source isolation: a qualitative analysis of source-isolated patients.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      Conversely, patients with SSI experienced an unfolding situation, often initiated by extreme and sudden pain and profuse wound leakage, where they had to deal with significant physical and emotional distress while seeking an explanation of their symptoms. This was characterized in the literature as “suffering, not being taken seriously”; “waiting in discomfort”; and “searching for answers.”
      • Andersson A.E.
      • Bergh I.
      • Karlsson J.
      • Nilsson K.
      Patients' experiences of acquiring a deep surgical site infection: an interview study.
      • Tanner J.
      • Padley W.
      • Davey S.
      • Murphy K.
      • Brown B.
      Patients' experiences of surgical site infection.
      A similar picture was described in the one study of patients infected with ESBL-producing bacteria, some of whom were experiencing recurrent urinary tract infections, where the theme “worrying about something being wrong without knowing what”
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      resonated with the experiences described in several of the SSI studies.
      Although MRSA-colonized patients generally lacked physical manifestations of the condition, for them the emotional response to the diagnosis and management of being colonized dominated. Here, the sociocultural influences on perceptions of infection were most intense, where patients in all 7 studies described “feeling dirty,” “having the plague,” “like a modern day HIV,” and “feeling like a leper.”
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      • Skyman E.
      • Bergbom I.
      • Lindahl B.
      • Larsson L.
      • Lindqvist A.
      • Thunberg Sjöström H.
      • et al.
      Notification card to alert for methicillin-resistant Staphylococcus aureus is stigmatizing from the patient's point of view.
      • Newton J.T.
      • Constable D.
      • Senior V.
      Patients' perceptions of methicillin-resistant Staphylococcus aureus and source isolation: a qualitative analysis of source-isolated patients.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      The way MRSA patients were told about their colonization also influenced subsequent responses, either generating significant emotional upset or a more relaxed attitude where little was perceived as problematic,
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      particularly when information was provided by an infection specialist.
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      This type of emotional response was not characteristic of the patient with SSI, whose concern centered on finding the cause of the symptoms
      • Andersson A.E.
      • Bergh I.
      • Karlsson J.
      • Nilsson K.
      Patients' experiences of acquiring a deep surgical site infection: an interview study.
      and dealing with despair,
      • Tanner J.
      • Padley W.
      • Davey S.
      • Murphy K.
      • Brown B.
      Patients' experiences of surgical site infection.
      rather than feeling socially isolated because of a diagnostic label. It did however feature in the study of patients with ESBL, with women expressing greater guilt, anxiety, and fear over possible transmission, whereas men tended to express greater anger and irritation over lack of information regarding their situation.
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      Patients with CDI seemed to experience a combination of extreme physical symptoms accompanied by embarrassment, anxiety, and depression. Uncontrollable diarrhea, anorexia, and extreme fatigue produced significant physical distress,
      • Guillemin I.
      • Marrel A.
      • Lambert J.
      • Beriot-Mathiot A.
      • Doucet C.
      • Kazoglou O.
      • et al.
      Patients' experience and perception of hospital-treated Clostridium difficile infections: a qualitative study.
      • Madeo M.
      • Boyack M.
      Using the lived experiences of patients with Clostridium difficile infection to improve care.
      • Pakyz A.L.
      • Moczygemba L.R.
      • VanderWielen L.M.
      • Edmond M.B.
      Fecal microbiota transplantation for recurrent Clostridium difficile infection: the patient experience.
      • Zellmer C.
      • De Wolfe T.
      • Van Hoof S.
      • Blakney R.
      • Safdar N.
      Patient perspectives on fecal microbiota transplantation for Clostridium difficile infection.
      described in one study as “the worst thing ever.”
      • Guillemin I.
      • Marrel A.
      • Lambert J.
      • Beriot-Mathiot A.
      • Doucet C.
      • Kazoglou O.
      • et al.
      Patients' experience and perception of hospital-treated Clostridium difficile infections: a qualitative study.
      Patients reported bowel disorders as being particularly challenging and loss of bowel control, the need for rapid access to toilets, and unpleasant odors provoked feelings of embarrassment for patients in both hospital and family settings.
      • Guillemin I.
      • Marrel A.
      • Lambert J.
      • Beriot-Mathiot A.
      • Doucet C.
      • Kazoglou O.
      • et al.
      Patients' experience and perception of hospital-treated Clostridium difficile infections: a qualitative study.
      • Madeo M.
      • Boyack M.
      Using the lived experiences of patients with Clostridium difficile infection to improve care.
      Although patients with CDI reported hospital staff being understanding and sympathetic to their plight,
      • Madeo M.
      • Boyack M.
      Using the lived experiences of patients with Clostridium difficile infection to improve care.
      embarrassment, guilt, and the uncertainty about how long physically draining symptoms would last were reported to lead to feelings of depression.
      • Guillemin I.
      • Marrel A.
      • Lambert J.
      • Beriot-Mathiot A.
      • Doucet C.
      • Kazoglou O.
      • et al.
      Patients' experience and perception of hospital-treated Clostridium difficile infections: a qualitative study.
      • Pakyz A.L.
      • Moczygemba L.R.
      • VanderWielen L.M.
      • Edmond M.B.
      Fecal microbiota transplantation for recurrent Clostridium difficile infection: the patient experience.
      • Zellmer C.
      • De Wolfe T.
      • Van Hoof S.
      • Blakney R.
      • Safdar N.
      Patient perspectives on fecal microbiota transplantation for Clostridium difficile infection.

      Theme 2: Experiencing the response of HCPs to HAI

      A recurring theme through all included studies, irrespective of infection or colonization type, was patient concern regarding the quality of interactions with HCPs. Not being taken seriously was highlighted by some patients with SSI, who knew there was something wrong but felt staff were dismissive of their symptoms.
      • Andersson A.E.
      • Bergh I.
      • Karlsson J.
      • Nilsson K.
      Patients' experiences of acquiring a deep surgical site infection: an interview study.
      • Sanger P.C.
      • Hartzler A.
      • Han S.M.
      • Armstrong C.A.L.
      • Stewart M.R.
      • Lordon R.J.
      • et al.
      Patient perspectives on post-discharge surgical site infections: towards a patient-centered mobile health solution.
      Many patients had limited understanding of their illness or management and experienced frustration when trying to obtain information from HCPs.
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      • Andersson A.E.
      • Bergh I.
      • Karlsson J.
      • Nilsson K.
      Patients' experiences of acquiring a deep surgical site infection: an interview study.
      • Pakyz A.L.
      • Moczygemba L.R.
      • VanderWielen L.M.
      • Edmond M.B.
      Fecal microbiota transplantation for recurrent Clostridium difficile infection: the patient experience.
      • Burnett E.
      • Lee K.
      • Rushmer R.
      • Ellis M.
      • Noble M.
      • Davey P.
      Healthcare-associated infection and the patient experience: a qualitative study using patient interviews.
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      Some studies reported patients felt information from staff was generally adequate; however, they also sought additional information themselves (eg, via the Internet).
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      • Madeo M.
      • Boyack M.
      Using the lived experiences of patients with Clostridium difficile infection to improve care.
      Patients perceived that clinical staff's lack of knowledge of specific HAIs was manifested by staff anxiety and uncertainty in how to deal with the patient and inconsistent and sometimes excessive use of protective measures, particularly for colonized patients.
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      • Skyman E.
      • Bergbom I.
      • Lindahl B.
      • Larsson L.
      • Lindqvist A.
      • Thunberg Sjöström H.
      • et al.
      Notification card to alert for methicillin-resistant Staphylococcus aureus is stigmatizing from the patient's point of view.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      This was exacerbated in Sweden by the use of the MRSA card,
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      • Skyman E.
      • Bergbom I.
      • Lindahl B.
      • Larsson L.
      • Lindqvist A.
      • Thunberg Sjöström H.
      • et al.
      Notification card to alert for methicillin-resistant Staphylococcus aureus is stigmatizing from the patient's point of view.
      which patients had to present at each health care encounter, often leading to concern in HCPs who were uncertain how to react. Colonized patients also reported that some staff were disrespectful in their interactions, which the patients with MRSA and ESBL perceived as being stigmatizing.
      • Skyman E.
      • Bergbom I.
      • Lindahl B.
      • Larsson L.
      • Lindqvist A.
      • Thunberg Sjöström H.
      • et al.
      Notification card to alert for methicillin-resistant Staphylococcus aureus is stigmatizing from the patient's point of view.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      Some studies mentioned the adverse impact that MRSA or ESBL had on subsequent restrictions to normal access to health care, with patients being excluded from rehabilitation classes,
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      having to wait until the end of clinic appointments to be seen,
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      or not being able to attend clinics at all with staff coming to their home in protective clothing instead.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      Conversely, patients who were able to speak to infection specialists reported being given constructive information and being reassured about their condition.
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Skyman E.
      • Bergbom I.
      • Lindahl B.
      • Larsson L.
      • Lindqvist A.
      • Thunberg Sjöström H.
      • et al.
      Notification card to alert for methicillin-resistant Staphylococcus aureus is stigmatizing from the patient's point of view.
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      • Madeo M.
      • Boyack M.
      Using the lived experiences of patients with Clostridium difficile infection to improve care.

      Theme 3: Adapting to life with an HAI

      Some patients reported that being colonized or infected with an HAI had little impact on their daily lives.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      • Newton J.T.
      • Constable D.
      • Senior V.
      Patients' perceptions of methicillin-resistant Staphylococcus aureus and source isolation: a qualitative analysis of source-isolated patients.
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      However, a common theme related to postdischarge experience of all colonization or infection types, except SSI, was the fear of transmission of infection and therefore feeling the need to protect others.
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      • Skyman E.
      • Bergbom I.
      • Lindahl B.
      • Larsson L.
      • Lindqvist A.
      • Thunberg Sjöström H.
      • et al.
      Notification card to alert for methicillin-resistant Staphylococcus aureus is stigmatizing from the patient's point of view.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      • Guillemin I.
      • Marrel A.
      • Lambert J.
      • Beriot-Mathiot A.
      • Doucet C.
      • Kazoglou O.
      • et al.
      Patients' experience and perception of hospital-treated Clostridium difficile infections: a qualitative study.
      • Pakyz A.L.
      • Moczygemba L.R.
      • VanderWielen L.M.
      • Edmond M.B.
      Fecal microbiota transplantation for recurrent Clostridium difficile infection: the patient experience.
      • Zellmer C.
      • De Wolfe T.
      • Van Hoof S.
      • Blakney R.
      • Safdar N.
      Patient perspectives on fecal microbiota transplantation for Clostridium difficile infection.
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      In many cases, this fear had significant impact on the patient's daily lives, their relationships with family, and implications for their future work and finances.
      Concern of possible transmission to family members, particularly grandchildren, was highlighted by many patients with MRSA, CDI, and ESBL, with the result that some restricted their contact with family or friends.
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      • Guillemin I.
      • Marrel A.
      • Lambert J.
      • Beriot-Mathiot A.
      • Doucet C.
      • Kazoglou O.
      • et al.
      Patients' experience and perception of hospital-treated Clostridium difficile infections: a qualitative study.
      • Pakyz A.L.
      • Moczygemba L.R.
      • VanderWielen L.M.
      • Edmond M.B.
      Fecal microbiota transplantation for recurrent Clostridium difficile infection: the patient experience.
      • Zellmer C.
      • De Wolfe T.
      • Van Hoof S.
      • Blakney R.
      • Safdar N.
      Patient perspectives on fecal microbiota transplantation for Clostridium difficile infection.
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      Patients were unsure whether or not to disclose their MRSA status to others, for fear of being rejected, either within their family or at work.
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      Some patients, primarily those colonized with MRSA, reported being excluded or distanced by family members.
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      Patients with CDI often self-excluded from social events and family contact, not only because of fear of transmission but also because of the unpleasant symptoms which they perceived as socially undesirable.
      • Guillemin I.
      • Marrel A.
      • Lambert J.
      • Beriot-Mathiot A.
      • Doucet C.
      • Kazoglou O.
      • et al.
      Patients' experience and perception of hospital-treated Clostridium difficile infections: a qualitative study.
      • Pakyz A.L.
      • Moczygemba L.R.
      • VanderWielen L.M.
      • Edmond M.B.
      Fecal microbiota transplantation for recurrent Clostridium difficile infection: the patient experience.
      • Zellmer C.
      • De Wolfe T.
      • Van Hoof S.
      • Blakney R.
      • Safdar N.
      Patient perspectives on fecal microbiota transplantation for Clostridium difficile infection.
      Similarly, patients with SSI and leaking wounds highlighted the impact that “seeing the wounds” had on close family relationships and the impact that necessary wound care had on both themselves and family caregivers.
      • Sanger P.C.
      • Hartzler A.
      • Han S.M.
      • Armstrong C.A.L.
      • Stewart M.R.
      • Lordon R.J.
      • et al.
      Patient perspectives on post-discharge surgical site infections: towards a patient-centered mobile health solution.
      • Tanner J.
      • Padley W.
      • Davey S.
      • Murphy K.
      • Brown B.
      Patients' experiences of surgical site infection.
      Negative impact on sexual relationships was also mentioned, particularly in relation to CDI.
      • Guillemin I.
      • Marrel A.
      • Lambert J.
      • Beriot-Mathiot A.
      • Doucet C.
      • Kazoglou O.
      • et al.
      Patients' experience and perception of hospital-treated Clostridium difficile infections: a qualitative study.
      • Zellmer C.
      • De Wolfe T.
      • Van Hoof S.
      • Blakney R.
      • Safdar N.
      Patient perspectives on fecal microbiota transplantation for Clostridium difficile infection.
      Therefore, all forms of HAI led to adverse consequences on patients' social lives and relationships.
      Many patients reported changes they made to taking hygiene precautions. There was evidence from one study that the impact of ESBL infection may have gendered components
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      that is, women were more proactive than men in taking precautions to prevent possible transmission, for example, extensive cleaning at home using alcohol or chlorine, separate toilets, and advising family members on hygiene measures; however, other studies highlighted extensive hygiene precautions being taken with no mention of gendered influences.
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      Other changes to daily living were mentioned by patients with MRSA, often with a significant degree of uncertainty about what was acceptable risk or excessive precaution, for example, cleaning the home,
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      washing hands,
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      avoiding traveling on public transport, playing sports, visiting friends, going to the hairdresser,
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      going to the gym,
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      or swimming.
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      Possible impact on employment or financial concerns was mentioned in a few studies; however, limited data was provided. For patients with MRSA, the primary concern was related to whether or not they would be able to work in certain occupations, such as health or child care, and whether or not to disclose their condition to employers or workmates for fear of being rejected.
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      For those with CDI, their concerns related more to their physical capacity to return to work.
      • Guillemin I.
      • Marrel A.
      • Lambert J.
      • Beriot-Mathiot A.
      • Doucet C.
      • Kazoglou O.
      • et al.
      Patients' experience and perception of hospital-treated Clostridium difficile infections: a qualitative study.
      • Pakyz A.L.
      • Moczygemba L.R.
      • VanderWielen L.M.
      • Edmond M.B.
      Fecal microbiota transplantation for recurrent Clostridium difficile infection: the patient experience.
      • Zellmer C.
      • De Wolfe T.
      • Van Hoof S.
      • Blakney R.
      • Safdar N.
      Patient perspectives on fecal microbiota transplantation for Clostridium difficile infection.
      Again, some but limited mention was made of the financial costs for patients with CDI and SSI who had to hire additional help to assist them with either daily care or household tasks,
      • Guillemin I.
      • Marrel A.
      • Lambert J.
      • Beriot-Mathiot A.
      • Doucet C.
      • Kazoglou O.
      • et al.
      Patients' experience and perception of hospital-treated Clostridium difficile infections: a qualitative study.
      or whose spouses had to take time off work to provide support.
      • Tanner J.
      • Padley W.
      • Davey S.
      • Murphy K.
      • Brown B.
      Patient narratives of surgical site infection: implications for practice.
      Accounts from patients with SSI suggest that the economic costs for them of adaptations required to their lives postdischarge from hospital could be substantial and often underestimated.
      • Andersson A.E.
      • Bergh I.
      • Karlsson J.
      • Nilsson K.
      Patients' experiences of acquiring a deep surgical site infection: an interview study.
      • Tanner J.
      • Padley W.
      • Davey S.
      • Murphy K.
      • Brown B.
      Patients' experiences of surgical site infection.
      • Tanner J.
      • Padley W.
      • Davey S.
      • Murphy K.
      • Brown B.
      Patient narratives of surgical site infection: implications for practice.

      Theme 4: Complex cultural context of HAI

      Further conceptualization of data reported in the previous themes consistently pointed to the influence of the complex cultural context in which infection or colonization occurs. In comparison with many other medical conditions, “having an infection” provoked responses in the patient, their family, and clinical staff that were shaped by social norms and expectations of the person “being clean” versus “feeling dirty.”
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      • Skyman E.
      • Bergbom I.
      • Lindahl B.
      • Larsson L.
      • Lindqvist A.
      • Thunberg Sjöström H.
      • et al.
      Notification card to alert for methicillin-resistant Staphylococcus aureus is stigmatizing from the patient's point of view.
      • Newton J.T.
      • Constable D.
      • Senior V.
      Patients' perceptions of methicillin-resistant Staphylococcus aureus and source isolation: a qualitative analysis of source-isolated patients.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      These sociocultural norms were influenced by concerns of “being contagious” and a risk to others,
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      • Skyman E.
      • Bergbom I.
      • Lindahl B.
      • Larsson L.
      • Lindqvist A.
      • Thunberg Sjöström H.
      • et al.
      Notification card to alert for methicillin-resistant Staphylococcus aureus is stigmatizing from the patient's point of view.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      • Guillemin I.
      • Marrel A.
      • Lambert J.
      • Beriot-Mathiot A.
      • Doucet C.
      • Kazoglou O.
      • et al.
      Patients' experience and perception of hospital-treated Clostridium difficile infections: a qualitative study.
      • Pakyz A.L.
      • Moczygemba L.R.
      • VanderWielen L.M.
      • Edmond M.B.
      Fecal microbiota transplantation for recurrent Clostridium difficile infection: the patient experience.
      • Zellmer C.
      • De Wolfe T.
      • Van Hoof S.
      • Blakney R.
      • Safdar N.
      Patient perspectives on fecal microbiota transplantation for Clostridium difficile infection.
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      and potentially driven by media stories which may exaggerate the danger of “super-bugs.”
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Burnett E.
      • Lee K.
      • Rushmer R.
      • Ellis M.
      • Noble M.
      • Davey P.
      Healthcare-associated infection and the patient experience: a qualitative study using patient interviews.
      Interestingly, patients with SSI reported a distinction between their infection and MRSA, expressing relief that they did not have MRSA, which they associated with “dirty” hospitals.
      • Tanner J.
      • Padley W.
      • Davey S.
      • Murphy K.
      • Brown B.
      Patients' experiences of surgical site infection.
      • Tanner J.
      • Padley W.
      • Davey S.
      • Murphy K.
      • Brown B.
      Patient narratives of surgical site infection: implications for practice.
      Socioculturally, competent adulthood is understood through self-control of our bodies and bodily functions; hence, experiencing uncontrollable diarrhea, as in CDI,
      • Guillemin I.
      • Marrel A.
      • Lambert J.
      • Beriot-Mathiot A.
      • Doucet C.
      • Kazoglou O.
      • et al.
      Patients' experience and perception of hospital-treated Clostridium difficile infections: a qualitative study.
      • Madeo M.
      • Boyack M.
      Using the lived experiences of patients with Clostridium difficile infection to improve care.
      • Pakyz A.L.
      • Moczygemba L.R.
      • VanderWielen L.M.
      • Edmond M.B.
      Fecal microbiota transplantation for recurrent Clostridium difficile infection: the patient experience.
      • Zellmer C.
      • De Wolfe T.
      • Van Hoof S.
      • Blakney R.
      • Safdar N.
      Patient perspectives on fecal microbiota transplantation for Clostridium difficile infection.
      or seeping, purulent wounds, as in SSI,
      • Andersson A.E.
      • Bergh I.
      • Karlsson J.
      • Nilsson K.
      Patients' experiences of acquiring a deep surgical site infection: an interview study.
      • Tanner J.
      • Padley W.
      • Davey S.
      • Murphy K.
      • Brown B.
      Patients' experiences of surgical site infection.
      contradicts the social norm of being in control of body function.
      As a consequence of this cultural context for infection, patients then faced many challenges in interacting with others, including HCPs, their family, their workmates, and wider society, around concerns regarding the transmission of infection perceived by both patient and others. These interactions between patient and others usually took place in a climate characterized by induced fear and uncertainty, where limited understanding of risk and appropriate risk-reducing behavior was constrained by lack of information and knowledge. This was most striking where frontline HCPs lacked knowledge of the causes and consequences of HAI; could not provide the patient with adequate information;
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      • Andersson A.E.
      • Bergh I.
      • Karlsson J.
      • Nilsson K.
      Patients' experiences of acquiring a deep surgical site infection: an interview study.
      • Pakyz A.L.
      • Moczygemba L.R.
      • VanderWielen L.M.
      • Edmond M.B.
      Fecal microbiota transplantation for recurrent Clostridium difficile infection: the patient experience.
      • Burnett E.
      • Lee K.
      • Rushmer R.
      • Ellis M.
      • Noble M.
      • Davey P.
      Healthcare-associated infection and the patient experience: a qualitative study using patient interviews.
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      adopted inconsistent infection precautions;
      • Criddle P.
      • Potter J.
      Exploring patients' views on colonisation with meticillin-resistant Staphylococcus aureus.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      • Skyman E.
      • Bergbom I.
      • Lindahl B.
      • Larsson L.
      • Lindqvist A.
      • Thunberg Sjöström H.
      • et al.
      Notification card to alert for methicillin-resistant Staphylococcus aureus is stigmatizing from the patient's point of view.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      and may respond in ways which heighten the patient's feeling of being stigmatized, or “like a leper.”
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      • Skyman E.
      • Bergbom I.
      • Lindahl B.
      • Larsson L.
      • Lindqvist A.
      • Thunberg Sjöström H.
      • et al.
      Notification card to alert for methicillin-resistant Staphylococcus aureus is stigmatizing from the patient's point of view.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      • Wiklund S.
      • Hallberg U.
      • Kahlmeter G.
      • Tammelin A.
      Living with extended-spectrum ß-lactamase: a qualitative study of patient experiences.
      The importance of cultural context, place, and time also emerged as influential. This is particularly noticeable in relation to several studies conducted in Sweden during the mid-2000s, when MRSA was relatively rare.
      • Andersson H.
      • Lindholm C.
      • Fossum B.
      MRSA-global threat and personal disaster: patients' experiences.
      • Lindberg M.
      • Carlsson M.
      • Högman M.
      • Skytt B.
      Suffering from meticillin-resistant Staphylococcus aureus: experiences and understandings of colonisation.
      • Skyman E.
      • Bergbom I.
      • Lindahl B.
      • Larsson L.
      • Lindqvist A.
      • Thunberg Sjöström H.
      • et al.
      Notification card to alert for methicillin-resistant Staphylococcus aureus is stigmatizing from the patient's point of view.
      • Skyman E.
      • Sjöström H.T.
      • Hellström L.
      Patients' experiences of being infected with MRSA at a hospital and subsequently source isolated.
      • Skyman E.
      • Lindahl B.
      • Bergbom I.
      • Sjöström H.T.
      • Åhrén C.
      Being Met as marked—patients' experiences of being infected with community-acquired methicillin-resistant (MRSA).
      Swedish clinical staff at the time seemed highly concerned but perhaps poorly informed about MRSA infection, and colonized patients were given an MRSA identification card, which they had to produce at each health care encounter; this combination of contextual factors was reported to be perceived as highly stigmatizing.

      Discussion

      To our knowledge, this is the first qualitative systematic review which comprehensively synthesizes evidence of the patient experience of different categories of health care–associated acquisition of an infection or colonization. The emerging themes are strongly interconnected and should be understood as a whole rather than as disconnected components.
      In summary, patients' experience of HAI could be expressed as a continuum of physical and emotional responses that were strongly influenced by the varying nature of different forms of HAI. Irrespective of the type of HAI, daily living was often significantly affected, for many patients with MRSA or ESBL, excessively and unnecessarily so, and for patients with CDI and SSI, unexpectedly and alarmingly so.
      For all HAIs except SSI, the influence of sociocultural context of HAI was particularly prominent: being seen as dirty and shameful colored patient experience, resulting in stigmatization and fear of contamination. In turn, this sociocultural context also then influenced relationships, resulting in a distancing from family, friends, and work, with many patients afraid to disclose their diagnosis for fear of rejection. In particular, patients colonized with MRSA or ESBL noted strong and frequently negative responses from HCPs. Unlike most other medical conditions for which HCPs responses toward patients tend to be supportive, reactions toward and interactions with patients with HAIs are particularly informed by sociocultural discourse. As with members of the wider society, HCPs may be concerned to distance or protect themselves from contagious patients.
      The nature of contagion, which heavily influenced patients' experiences, needs to be considered within social and temporal contexts which shape how infection and its impact on people are understood at any given point in history.
      • Brachman P.S.
      Infectious diseases—past, present, and future.
      • Curtis V.A.
      Dirt, disgust and disease: a natural history of hygiene.
      MRSA, in particular, has a moral career in the media as associated with attribution of blame around poor hygiene practices of nurses, doctors, and hospitals.
      • Crawford P.
      • Brown B.
      • Nerlich B.
      • Koteyko N.
      The “moral careers” of microbes and the rise of the matrons: an analysis of UK national press coverage of methicillin-resistant Staphylococcus aureus (MRSA) 1995-2006.
      Therefore, broader narratives and media discourse around blame for different types of HAI could, in part, inform patients' understandings of what they were experiencing and others reactions to this.
      Symbolic interactionist theory explains that humans create understanding of their self and their situation based on their interpretation of their interactions with others in a specific context
      • Blumer H.
      Symbolic interactionism: Perspective and method.
      : “selves experience, suffer, create meaning, and they act.”
      • Charmaz K.
      • Belgrave L.L.
      Modern symbolic interaction theory and health.
      Indeed, interpretation of the place of the self and others in the context of HAI strongly shaped patient responses to their experience. Consequently, HAI should be seen as a medical condition to be treated but also as a socially constructed reality that shapes patient experiences and responses of patients, HCPs, and family members. Recognizing and understanding this sociocultural context is essential to being able to provide care that meets patients' needs and concerns.
      Interpretation of this qualitative synthesis should also take account of the times and locations of the individual studies. Not all authors provided data collection dates; however, where reported, many of the findings related to patient experiences up to the mid-2000s. These temporal aspects of context are relevant particularly in relation to MRSA because the ability to manage patients effectively may be influenced by HCPs past exposure to patients with MRSA infection. Low prevalence in some countries may contribute to lower staff confidence in dealing with MRSA-colonized patients. For instance, in Sweden, the incidence of MRSA in all S aureus isolates is relatively low (ranging from 0.54% in 2000 to 1.01% in 2005) in comparison with the United Kingdom (43.6%), Greece (42.1%), and Romania (59.8%) in 2005.
      • European Centre for Disease Prevention and Control
      Data from the ECDC surveillance atlas—antimicrobial resistance.
      Despite these international variations in prevalence, our review included several Swedish studies of patient experience, but no studies from countries with very high (>50%) proportions of MRSA isolates. Increased exposure to HAI cases may reasonably be expected to improve clinical staffs' knowledge and change behaviors over time. Therefore, previous findings may not necessarily be reflective of contemporary HCP practice.
      Biology is also important to recognize. When considering the impact of HAI on daily living, once again similarities and differences, based on the type of HAI, emerge. Patients with MRSA found it particularly difficult to make sense of their experience of colonization because of being asymptomatic. Despite this symptom ambiguity, the impact of MRSA on daily life was significant for many patients. The risk literature would suggest that what can be concern or risk in one context is not necessarily so in another.
      • Lupton D.
      Risk.
      For patients who are carriers of MRSA, it is the hospital context within which they are screened where the carriage of MRSA has the greatest implications for themselves and for other patients who are unwell and vulnerable to infection. The studies synthesized suggest, however, that for HCPs and patients with MRSA, the nature of this risk for everyday lives outside of hospital requires further examination and more proportionate advice should be offered.
      Conversely, the physical impact of SSI and CDI symptoms on daily activities was significant. The “horror stories”
      • Tanner J.
      • Padley W.
      • Davey S.
      • Murphy K.
      • Brown B.
      Patients' experiences of surgical site infection.
      described in relation to patients' experiences of SSI were concerning. Such stories are a device used by patients to draw attention to their situation, when not being taken seriously seems beyond belief because their experience of their symptoms is so extreme. The framing of these stories by patients suggests a mismatch between patient experience of SSI and HCPs' perceptions of the extreme depth of the emotional and physical impact on patients. Similarly, for patients with CDI, accounts of the emotional and physical effects of profuse, smelly diarrhea heighten awareness of patient's own distress at their plight. To enable HCPs to provide the necessary information and support for patients, the use of patient stories as a developmental tool for professional learning has grown in recent years.
      • Buckley A.
      • Corless L.
      • Mee S.
      Using patient stories to reflect on care.
      • Callanan C.
      Recording patient stories as an aid to training and service improvement.
      • Evans G.
      Patient stories: MRSA is gut-wrenchingly humanized, and lawmakers are listening.
      • Godfrey K.
      Time to unleash the potential of patient stories.
      Therefore, patient stories of their experiences of HAI could usefully inform HCP education programs.
      The conclusions from this review are limited by the moderate quality and scope of the included studies. In terms of study quality, the appraisal scoring system used
      • Chatfield S.L.
      • DeBois K.
      • Nolan R.
      • Crawford H.
      • Hallam J.S.
      Hand hygiene among healthcare workers: a qualitative meta summary using the GRADE-CERQual process.
      is novel, and the application of a numerical score to appraise qualitative research may be contentious. However, the robust peer review of analysis and synthesis of the included studies adds rigor to the meta-synthesis. These factors should be taken into account in relation to this discussion.

      Recommendations

      Future research needs to further explore the complexities of the relationships between biological, social, and contextual aspects of HAI and their associated care. In particular, there is a need for greater understanding of the sociocultural and socioeconomic components of the patient experience of a range of HAIs. This work should inform recommendations for how contemporary HCPs can best respond to these sociocultural influences.
      Furthermore, HCPs' responses to patients with different types of HAIs require further exploration. Gaps in knowledge or training, particularly in the light of new and emerging antimicrobial-resistant organisms, should be addressed. Consideration should be given to how HCPs' attitudes and behaviors can be shaped, for example, by the use of patient stories or similar educational or behavior change techniques.
      Further research on the impact of HAI on daily activities should inform the development and testing of a patient information approach which deals with immediate concerns and transition to home from hospital, with specific information for different organisms and in relation to infection and colonization.

      Conclusions

      This qualitative systematic review brings together, for the first time, studies into patient experiences of different types of HAIs. Although the type of HAI was influential in some respects, the 4 themes described in this synthesis illuminate the commonalities and distinctions in the patient experience of HAI.
      HAI is a significant event in the patient's care journey and subsequent life that is influenced by biological, social, and contextual dimensions. Avoiding this unintended consequence is paramount; however, where it occurs, understanding and taking account of the patient experience can help HCPs to interact and respond in a constructive way, providing more effective support at this challenging time.

      Supplementary data

      The following is the supplementary data to this article:

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