Advertisement

Indispensable yet invisible: A qualitative study of the roles of carers in infection prevention in a South Indian hospital

  • Author Footnotes
    # These authors joint first authorship.
    Surya Surendran
    Footnotes
    # These authors joint first authorship.
    Affiliations
    Department of Infection Control and Epidemiology, Amrita Institute of Medical Sciences, Kochi, India

    Health System and Equity, The George Institute for Global Health, New Delhi, India
    Search for articles by this author
  • Author Footnotes
    # These authors joint first authorship.
    Enrique Castro-Sánchez
    Footnotes
    # These authors joint first authorship.
    Affiliations
    Department of Medicine, Health Protection Research Unit in Healthcare Associated Infections and Antimicrobial Resistance, Imperial College London, London, United Kingdom

    School of Health Sciences, University of West London, London, United Kingdom
    Search for articles by this author
  • Vrinda Nampoothiri
    Affiliations
    Department of Infection Control and Epidemiology, Amrita Institute of Medical Sciences, Kochi, India
    Search for articles by this author
  • Shiny Joseph
    Affiliations
    Department of Gastrointestinal Surgery, Amrita Institute of Medical Sciences, Kochi, India
    Search for articles by this author
  • Sanjeev Singh
    Affiliations
    Department of Infection Control and Epidemiology, Amrita Institute of Medical Sciences, Kochi, India
    Search for articles by this author
  • Carolyn Tarrant
    Affiliations
    Department of Health Sciences, University of Leicester, Leicester, United Kingdom
    Search for articles by this author
  • Alison Holmes
    Affiliations
    Department of Medicine, Health Protection Research Unit in Healthcare Associated Infections and Antimicrobial Resistance, Imperial College London, London, United Kingdom
    Search for articles by this author
  • Esmita Charani
    Correspondence
    Corresponding author at: Department of Medicine, Health Protection Research Unit in Healthcare Associated Infections and Antimicrobial Resistance, Imperial College London, 8th Floor Commonwealth Building, Du Cane Road, London W12 ONN, United Kingdom
    Affiliations
    Department of Infection Control and Epidemiology, Amrita Institute of Medical Sciences, Kochi, India

    Department of Medicine, Health Protection Research Unit in Healthcare Associated Infections and Antimicrobial Resistance, Imperial College London, London, United Kingdom

    Centre for Excellence in Infectious Diseases Research, University of Liverpool, Liverpool, United Kingdom

    Division of Infectious Diseases & HIV Medicine, Department of Medicine, University of Cape Town, South Africa
    Search for articles by this author
  • Author Footnotes
    # These authors joint first authorship.
Open AccessPublished:August 18, 2022DOI:https://doi.org/10.1016/j.ijid.2022.08.011

      Highlights

      • Existing policies do not recognize the role of carers in infection prevention and control.
      • Carers have critical roles to play in the physical environment of the patient.
      • Carers contribute to clinical decision-making through their knowledge of the patient.
      • Carers do not receive standard or formal education or training to support these roles.
      • Infection prevention and control policies need to consider cultural contexts.

      Abstract

      Objectives

      We investigated the roles of patient carers in infection-related care on surgical wards in a South Indian hospital from the perspective of healthcare workers (HCWs), patients, and their carers.

      Methods

      Ethnographic study included ward-round observations (138 hours) and face-to-face interviews (44 HCWs, 6 patients/carers). Data (field notes, interview transcripts) were coded in NVivo 12 and thematically analyzed. Data collection and analysis were iterative, recursive, and continued until thematic saturation.

      Results

      Carers have important, unrecognized roles. At the study site, institutional expectations are formalized in policies, demanding a carer to always accompany in-patients. Such intense presence embeds families in the patient care environment, as demonstrated by their high engagement in direct personal (bathing patients) and clinical care (wound care). Carers actively participate in discussions on patient progress with HCWs, including therapeutic options. There is a misalignment between how carers are positioned by the organization (through policy mandates, institutional practices, and HCWs expectations), and the role that they play in practice, resulting in their role, though indispensable, remaining unrecognized.

      Conclusion

      Current models of patient and carer involvement in infection prevention and control are poorly aligned with sociocultural and contextual aspects of care. Culture-sensitive infection prevention and control policies which embrace the roles that carers play are urgently needed.

      Keywords

      Introduction

      Healthcare systems worldwide have increasingly embraced patient-centeredness, encouraging the involvement of patients in decisions about their care (
      • Anderson M
      • Ottum A
      • Zerbel S
      • Sethi A
      • Gaines ME
      • Safdar N.
      A survey to examine patient awareness, knowledge, and perceptions regarding the risks and consequences of surgical site infections.
      ;
      • Batalden M
      • Batalden P
      • Margolis P
      • Seid M
      • Armstrong G
      • Opipari-Arrigan L
      • et al.
      Coproduction of healthcare service.
      ;
      • Cooper AL
      • Brown JA
      • Salathiel J
      • Gollner S.
      An intervention to improve patient understanding and use of preoperative chlorhexidine washes.
      ;
      • Sanger PC
      • Hartzler A
      • Han SM
      • Armstrong CAL
      • Stewart MR
      • Lordon RJ
      • et al.
      Patient perspectives on post-discharge surgical site infections: towards a patient-centered mobile health solution.
      ;
      • Sutton E
      • Brewster L
      • Tarrant C.
      Making infection prevention and control everyone's business?Hospital staff views on patient involvement.
      ). Capturing and amplifying the patient experience in healthcare settings, however, remains understudied. Despite much progress, vast disparities remain in the ability of health systems to provide patient-centered care (
      • Mahendradhata Y
      • Souares A
      • Phalkey R
      • Sauerborn R.
      Optimizing patient- centeredness in the transitions of healthcare systems in low- and middle-income countries.
      ). Reviewing the existing evidence, the majority of the limited infection-related patient involvement initiatives in in-patient care originate from high-income settings (
      • Mbamalu O
      • Bonaconsa C
      • Nampoothiri V
      • Surendran S
      • Veepanattu P
      • Singh S
      • et al.
      Patient understanding of and participation in infection-related care across surgical pathways: a scoping review.
      ). This gap in evidence limits the generalizability of findings, as the relationship between healthcare workers (HCW) and patients, and citizens’ access to and perception of healthcare vary across cultures and countries, shaped by socioeconomic and cultural determinants (
      • Murgic L
      • Hébert PC
      • Sovic S
      • Pavlekovic G.
      Paternalism and autonomy: views of patients and providers in a transitional (post-communist) country.
      ;
      • Georgia G.
      The contribution of family in the care of patient in the hospital.
      ).
      In addition to these sociocultural influences, the balance between medical paternalism and patient autonomy is constantly being tested and challenged by multiple factors, including the availability of information and access to therapies on the internet or social media (
      • Kilbride MK
      • Joffe S.
      The new age of patient autonomy: implications for the Patient-Physician Relationship.
      ). The role of family members adds further complexity, as their roles as carers and co-dependents are often overlooked (
      • Georgia G.
      The contribution of family in the care of patient in the hospital.
      ). This oversight may be particularly significant where societal structures and cultural traditions attribute greater importance to a patient's social networks (
      • Kumar S
      • Christina J
      • Jagadish AR
      • Peter JV
      • Thomas K
      • Sudarsanam TD.
      Caregiver perceptions on intensive care: a qualitative study from southern India.
      ). For example, in many low- and middle-income countries, people live with extended family members which may include several generations in the same household, sharing not only a physical space but also economic resources, and mutually benefiting from social and cultural activities and assets (
      • Worthington RP
      • Gogne A.
      Cultural aspects of primary healthcare in india: a case- based analysis.
      ). From a sociological perception, when a person is ill, they experience not only a biological process but may also need to adjust their behaviors and often withdraw from routine social roles (
      • Parsons T.
      The social system.
      ). This can impact the lives of their family members, who may be required to assume the role of carers (
      • Park JY
      • Pardosi JF
      • Seale H.
      Examining the inclusion of patients and their family members in infection prevention and control policies and guidelines across Bangladesh, Indonesia, and South Korea.
      ). Furthermore, during the patient's admission to the hospital, family members and carers provide not only psychological and emotional support to the patient, but also often act as custodians of vital clinical information, and more importantly, continuing patient support through recovery and convalescence (
      • Boyle B.
      The critical role of family in patient experience.
      ).
      The involvement of family members in the in-patient journey can shape clinical activities, including infection prevention and control (IPC) practices (
      • Park JY
      • Pardosi JF
      • Seale H.
      Examining the inclusion of patients and their family members in infection prevention and control policies and guidelines across Bangladesh, Indonesia, and South Korea.
      ). Evidence highlights the vital role played by carers in enhancing the well-being of patients and improving clinical outcomes, such as surgical wound healing (
      • Miller C
      • Kapp S.
      Informal carers and wound management: an integrative literature review.
      ). While the need to recognize the influence of carers and their role in IPC has been mentioned in World Health Organization guidelines, which advocate for partnerships between the patients, their families, and the healthcare providers to improve practices such as hand hygiene in healthcare (
      World Health Organization
      Guidelines on hand hygiene in health care: first global patient safety challenge clean care is safer care.
      ), much progress remains to be made in integrating this approach in national and local policy and guidelines (
      • Park JY
      • Pardosi JF
      • Seale H.
      Examining the inclusion of patients and their family members in infection prevention and control policies and guidelines across Bangladesh, Indonesia, and South Korea.
      ).
      The effect of roles and activities of carers on the risk of the spread of healthcare-associated infections is not well understood. This may be partly due to the ambiguity and informal approach to the role of carers and, indeed, patients while they are hospitalized. The existing research data highlights the lack of clarity about roles and insufficient information about expected IPC practices (
      • Miller C
      • Kapp S.
      Informal carers and wound management: an integrative literature review.
      ;
      • Park JY
      • Pardosi JF
      • Seale H.
      Examining the inclusion of patients and their family members in infection prevention and control policies and guidelines across Bangladesh, Indonesia, and South Korea.
      ).
      As part of a larger international study (
      • Singh S
      • Charani E
      • Devi S
      • Sharma A
      • Edathadathil F
      • Kumar A
      • et al.
      A road-map for addressing antimicrobial resistance in low- and middle-income countries: lessons learnt from the public private participation and co-designed antimicrobial stewardship programme in the State of Kerala India.
      ;
      • Veepanattu P
      • Singh S
      • Mendelson M
      • Nampoothiri V
      • Edathadatil F
      • Surendran S
      • Bonaconsa C
      • Mbamalu O
      • Ahuja S
      • Birgand G
      • Tarrant C
      • Sevdalis N
      • Ahmad R
      • Castro-Sanchez E
      • Holmes A
      • Charani E.
      Building resilient and responsive research collaborations to tackle antimicrobial resistance-Lessons learnt from India, South Africa, and UK.
      ) investigating and optimizing infection-related care in surgical pathways, we sought to explore the extent and nature of the involvement of carers in the experience of patients undergoing surgical procedures. We included the perspective of a wide range of stakeholders including HCWs, patients, and their carers. In our study, we defined ‘carers’ as family members, friends, or any other person associated with the patient who provided care for them either during hospitalization or at home, without expecting any financial return.

      Methods

      Setting

      The research was conducted in a 1350-bed, not-for-profit, tertiary hospital in south India. This hospital represented an atypical setting in the Indian context as it had state-of-the-art clinical management and a well-established IPC team. Two surgical departments, gastrointestinal surgery, and cardiovascular surgery, were included in the study. These departments were selected as they represent specialties with a high rate of surgeries requiring postoperative care and recovery.

      Population

      Using purposive sampling, HCW in the selected teams and patients who underwent surgery and their carers were eligible to be included in the study (Supplemental file 1).

      Data collection methods

      Data were gathered by researchers between June 2018 and October 2019. The ethnographic study included non-participant observations, semi-structured face-to-face interviews with patients, carers, and HCW, and documentary analysis.
      Observations were conducted using an observation guide developed by the researchers and implemented in different healthcare settings (
      • Charani E
      • Ahmad R
      • Rawson TM
      • Castro-Sanchèz E
      • Tarrant C
      • Holmes AH.
      The differences in antibiotic decision-making between acute surgical and acute medical teams: an ethnographic study of culture and team dynamics.
      ;
      • Singh S
      • Charani E
      • Devi S
      • Sharma A
      • Edathadathil F
      • Kumar A
      • et al.
      A road-map for addressing antimicrobial resistance in low- and middle-income countries: lessons learnt from the public private participation and co-designed antimicrobial stewardship programme in the State of Kerala India.
      ). Data were collected from surgical wards during routine rounds and outpatient clinics. Researchers observed how HCWs provided routine clinical services to the patients under their care, including any communication or interactions between patients and their carers. Specifically, data were gathered from any practices that included interacting with the patient or patient bedside surfaces and would be classified as infection-related care including wound care, hand washing, checking lines or catheters, and administering medicines to the patient. HCWs involved in ward rounds were invited to participate in interviews. Patients who developed infections after surgery were also invited to participate in interviews, along with their carers. A semi-structured interview guide was used to investigate the perspectives of participants on their roles and responsibilities in relation to antibiotic use and IPC care. The interview guides were tailored to HCW and patients/carers (observation and interview guides in supplementary file 2). In addition to the interview guide, questions that arose during the observations and interviews were also explored. HCW interviews took place away from clinical duties at a mutually agreed location and time. Interviews of patients and carers were conducted at the bedside or in a vacant room when the patients were not receiving any medical intervention.
      The interviews were conducted in a language comfortable for the participants, either English or Malayalam, the local language. All interviews in Malayalam were conducted by S. Surendran and VN. Interviews were recorded and transcribed verbatim into English. The English translation was cross-checked for accuracy with the original transcriptions in Malayalam by S. Surendran and VN.
      Data relevant to infection-related care that considered the role of patients and/or carers were retrieved from the existing international, national, and hospital guidelines to provide contextual information. Relevant hospital-wide policies and guidelines were retrieved from the IPC lead in the hospital. National and international guidelines were retrieved from the official websites of the World Health Organization, Indian Council of Medical Research, National Centre for Disease Control, India, and National Accreditation Board for Hospitals and Healthcare Providers, India.

      Data analysis

      Field notes and transcripts were coded line by line using Nvivo 12 software and analyzed thematically using a constant comparative approach (
      • Charmaz K.
      Constructing grounded theory: a practical guide through qualitative analysis.
      ). A coding framework was developed based on emerging themes. This framework was further discussed, and finalized among the researchers after an initial set of coding. The agreed framework was then used to code the remaining data and any emerging codes were discussed in further meetings. Data collection and analysis were iterative, recursive, and continued until thematic saturation was achieved, that is, when no new themes were revealed (
      • Saunders B
      • Sim J
      • Kingstone T
      • Baker S
      • Waterfield J
      • Bartlam B
      • et al.
      Saturation in qualitative research: exploring its conceptualization and operationalization.
      ).
      The categories and relationships within the themes were explored to develop the theoretical statements. The policy and guidelines were reviewed for any references to patient and carer roles in IPC practices. In addition, the clinical records of the patients who were included in the study were reviewed by the researchers to provide contextual information and to help the researchers compare the responses of the patients to the documented account of their care while in the hospital. Methodological and analytic triangulation was achieved by using data from interviews, observations, and documentary analysis. The findings were discussed iteratively with co-authors to identify and develop themes. These findings were further fed back to the surgical teams participating in the study in a meeting.

      Results

      Data were collected from over 138 hours of observations, 44 interviews with HCW and six with patients and carers (one interview was conducted with only the patient). We observed over 800 episodes of HCWs, patient and carer discourse during the ward rounds. This gave us insight into the carers’ roles and responsibilities in the patient pathway. Table 1 summarizes the data gathered.
      Three themes emerged: policy mandates and expectations on carer involvement, the indispensable yet invisible role of carers, and inconsistent carer education.

      Policy mandates, institutional practices, and HCWs expectations about carers involvement

      International and national IPC guidelines articulate a procedural involvement of carers centered on how to perform tasks such as hand hygiene or donning of personal protective equipment. Carers are not seen as an asset but as individuals whose presence and behavior potentially present an infection risk to patients. For example, special precautions for isolated patients, including restrictions for visitors and education of carers about hand hygiene and protective equipment, are largely identified by all major guidelines.“Tailored IPC education for patients or family members should be considered to minimize the potential for healthcare-associated infections.” Improving IPC at the health facility (

      World Health Organization. Improving infection prevention and control at the health facility: Interim practical manual supporting implementation of the WHO guidelines on core components of infection prevention and control programmes. https://apps.who.int/iris/handle/10665/279788, 2018 (accessed 20 July 2022).

      )
      “Whenever family members assume care activities, they should receive tailored IPC training in order to protect themselves and their loved ones and thus minimize any possibility of cross-transmission.” World Health Organization minimum requirements for IPC programs (

      World Health Organization. Minimum requirements for infection prevention and control programmes. https://apps.who.int/iris/handle/10665/330080, 2019 (accessed 20 July 2022).

      )
      The National Accreditation Board for Hospitals & Healthcare Providers and recent National Centre for Disease Control guidelines recognize the need for effective protective equipment for family members as standard IPC precautions. The institutional guidelines of the study site only referenced patient education on signs of surgical site infections and wound care, with no reference to the role of carers.
      The study hospital, however, mandates that a carer be always present with the patient, to the extreme that a patient would not be accepted for hospital admission without a carer.“One attendant should be allowed to stay in the ward with the patient who should be taught to practice hand hygiene before and after touching the patient.” National Centre for Disease Control National Guideline for IPC in Healthcare facilities (

      National Centre for Disease Control. National Guideline for Infection Prevention and Control in Healthcare facilities. https://www.mohfw.gov.in/pdf/National%20Guidelines%20for%20IPC%20in%20HCF%20-%20final%281%29.pdf, 2020 (accessed 20 July 2022).

      ).
      The hospital justifies this approach by recognizing that a person is needed to run errands (for example, buy medications or pay bills) for which there are no designated staff members, and patients cannot go themselves. The hospital environment is also adapted to enable and facilitate the carers’ activities. For example, by providing beds for carers next to the patient on the wards. In the intensive care unit, carers are only allowed during visiting hours.
      This relative invisibility of patients and carers in guidelines and policies was corroborated in the views expressed by HCWs, who consider the roles of patients and carers in IPC to be restricted to hand hygiene practices (Table 2). Despite this HCWs still expect the carers to perform IPC-related activities while in the hospital or at home (Table 2). They also recognize that the mere presence of carers in the hospital for prolonged periods can pose a potential risk for the spread of infection. This role is exacerbated in ICU, compared with general care wards, due to structural deficiencies mitigated by the presence of the carers (Table 2). For example, though all care is provided by HCW in ICU, on the wards, carers support the patient and are expected to be involved in their care. They perform a range of personal care tasks such as bathing, acquiring medicines for them and feeding them, etc. (Table 2).

      Carers have an indispensable presence at patient bed space yet are invisible

      The common term used in the Indian context to describe family members or friends who accompany patients to the hospital is ‘bystander’. This word was referred to in the local policy and was used in general conversation. From this point forward, we use the term carer for consistency, except when referencing data where the term bystander is used instead. Carers are a constant presence in the physical environment of the patient, often engaging in activities that would bring them in contact with the patient (Table 2). They are involved in supporting the patients in their regular day-to-day activities, both during the hospital stay (Table 2) and during convalescence at home. Sometimes, family members take turns and stay with the patients (Table 2).
      Carers are approached by HCWs for a range of activities, from fairly mundane such as obtaining details regarding the patients to crucial decisions that need to be made about clinical care (Table 2). It was common for HCWs to directly educate carers about patient care. This was observed during ward rounds, where, while the patients were asked about how they were doing by the HCWs, the clinical decisions to be made were discussed with the carer. There were also instances when HCWs withheld all or some of the clinical information from the patient, at the request of the carers, leaving them responsible for decisions (Table 2). Since communication occurred mostly between the HCWs and carers, decisions regarding patient care were sometimes negotiated exclusively by the carers. In turn, patients often reported in the interviews that they had no idea about what was happening in their care (Table 2). Often, when a patient was interviewed in the presence of a carer, the carer contributed more information regarding the patient's health progress than the patient themselves (Table 2).
      After discharge, family members become the primary caretakers responsible for patient health, hygiene, and medications. This includes dressing wounds regularly and monitoring for signs or symptoms of infection in the surgical site (Table 2). There is a belief that infections are ‘brought in’ by other visitors (Table 2), resulting in recently discharged patients being kept at home (Table 2), where the environment could be controlled and visitors restricted (Table 2). The patient and carers also assume roles that traditionally would be the remit of the HCWs, such as chasing culture results and querying infection management (Table 2).

      Inconsistencies in carer support and education

      The complex role played by carers is unrecognized and unsupported. Carers do not receive any standard or formalized training to prepare them for their role, nor do the patients. Post-discharge tasks carried out by carers become even more clinical. For example, while nurses arrange wound care during hospital admission, carers pick up responsibilities for such care and dressing techniques by observing HCWs and learning on the go (Table 2). Before patients are discharged, carers receive instruction from HCWs during ward rounds (Table 2), and may receive information leaflets on infection prevention. However, such training and information provision for carers is not routinely provided, risking wound contamination and infection (Table 2).

      Discussion

      This study has identified the paradoxical position of carers in the Indian healthcare context. They are indispensable yet invisible to HCWs, and often overlooked in institutional policies, including IPC protocols as described in this study. The carers are considered by HCWs and administrators as being too peripheral to patient care roles to feature in IPC policy or guidelines. Despite this, in this study, they were often very involved in-patient care, making critical decisions for patients. Carers do not receive any training or support to perform this role and are reliant on learning from observing HCWs carry out specific tasks during the patient's stay. This potentially risks misunderstandings of practices or indeed adopting wrong practices, which could harm the patient. Carers bring their own expertise and knowledge of the individual patient's illness that should be acknowledged in efforts to include them as part of the care team. Although not observed in this study, we cannot rule out that carer practices may also be determined by their own beliefs and knowledge shaped through sense-making (
      • Gwyn Richard
      Communicating health and illness.
      ). Therefore, we should not only consider the knowledge the patient brings to their care but also the knowledge the carers may bring to patient care (
      • Sadler E
      • McKevitt C.
      Expert carers’: an emergent normative model of the caregiver.
      ). Effective engagement with carers will benefit from the recognition of the ‘non-technical’ or experiential domains of caring, and the integration of ‘different meanings of expertise’ (
      • Sadler E
      • McKevitt C.
      Expert carers’: an emergent normative model of the caregiver.
      ). Key recommendations have emerged from this work which we have summarized in Box 1, and discussed in more detail in the following sections.
      Box 1Key findings, their implications, and recommendations for future practice.
      Key findings and implicationsRecommendations for future practice
      Carer roles and responsibilities are not recognized in existing infection prevention and control (IPC) guidelines and policies, despite their roles in-patient care.Greater awareness of different cultural norms in relation to carer roles in IPC policy and guidelines.

      Active engagement with and participation of carers by healthcare workers (HCWs) where they are present, able, and willing to contribute to patient care.
      Where expectations are placed on carers these are often not supported by training or support for them to carry out their roles effectively.Formal acknowledgment of carer roles in policy and guidelines. This needs to be supplemented by providing support and education to carers. This has the additional benefit of recognizing the knowledge on patient care needs that carers bring, enhancing patient care and outcomes. However, consider unintended consequences.
      There is a lack of effective communication tools for carers who may have different needs from HCWs or patients.There needs to be a move toward communicating with carers about healthcare on platforms and in language that is accessible to them. Providing information not only about hospital-related care, but also post-discharge. Peer-led provision of information in this area needs to be explored.
      HCW, healthcare worker; IPC, infection prevention and control.
      Table 1Data collected through the different methods used.
      Methods usedQuantityTarget populationRelevance of the data gathered to the study
      Non-participant observationsBroad scope observation138 hours of observation, including patient/carer and HCW discourseAll stakeholders, including carers and HCWs, in surgical intensive care unit and wards, departmental meetings, outpatient clinicOverview of the setting, environmental context and resource availability.

      Communication between HCWs and patients and carers.

      Captured the attitudes, roles and behaviors of stakeholders involved, with focus on IPC practices.
      Shadowing individualsTrainee surgeonsRoles played by individuals with focus on IPC practices
      Medical Social workersCommunication with patients and carers.
      Focused observationsPatients and carersFocus on individual patients. Highlighted IPC activities around the bed space and the involvement of carers.
      Face-to-face interviewsHCWs interview50 interviews

      (44 HCWs, 6 patients/carers)


      Surgeons, trainee surgeons, anesthetists, nurses, clinical pharmacists, medical social workers
      HCWs’ perspective of roles related to IPC played by them, and by the patients and carers.
      Patients and carersPatients who developed infections after undergoing surgery in the respective departments and their carersPatient and carer experiences, roles and responsibility in-patient care; with focus on IPC practices.
      Documentary analysis9 documentsGuideline documents of World Health Organization, Indian Council for Medical Research, National Centre for Disease Control, National Accreditation Board for Hospitals, Hospital guidelines on patient and carer participation in healthcare decisions, hospital IPC guidelineSupplementary analysis gives insight into current involvement of patients and carers in patient care recommended through guidelines and policies
      HCW, healthcare worker; IPC, infection prevention and control.
      Table 2Key emerging themes from data collected through observations and interview.
      ThemeQuotes
      Theme 1 (T1): Policy mandates, institutional practices, and HCWs expectations about carers involvement(T1 a) “We always tell the patient and the patient carer, they should wash their hand thoroughly before touching the patient, after using the washroom, and before food. All the carers should use face mask.”

      -Interview, Medical Social Worker A

      (T1 b) “…they do have a role in infection control practice as long as you educate them that a chlorhexidine bath can go a long a way in preventing surgical site infection and postoperative infection... because they (carers) are in the ‘more infected’ parts of the hospital and as long as they ensure that they have good infection control practices, they will not be vectors that carry bugs from place to place, so yes, I feel it is an important role the patients and their carers can play in infection control practice.”

      -Interview, Anesthetist A

      (T1 c) “In the ward, they need all the bystanders of patients… in the ICU, the IPC care would be all done by the nursing staff, the number of staffs are higher and I think they are also well trained, so the infection control part would be at its best in the ICU, but it is not the same on the general wards.”

      -Interview, Surgeon A

      (T1 d) “Every morning at 5:00 a.m. I take my shower. My daughter will give me bath with hot water and she wipes me dry and when I lie on my bed, the nurse will come, clean and apply the medicine. There is a hole there right, that they do the dressing for.”

      -Interview, Patient A
      Theme 2 (T2): Carers have indispensable presence at patient bedspace yet are invisible(T2 a) “I was always here [by patient bedside]. I have not left him even for a bit. Now it is 7 days since we are here and I am with him all the time.”

      -Interview, Carer A

      (T2 b) The carer assisted patient to get up from bed, and held on to her while she walked. They came out of the cubicle and walked through the corridor for a while. The carer was observed not to be using a hand sanitizer while she came in contact with the patient.

      -Observation notes

      (T2 c) “[During IP stay at hospital] my son would go from intensive care to work. Then when I was transferred to a ward, my younger son and his wife came. As they have no children, both of them came to the hospital and stayed as carers for two nights. After that, my two younger sisters came… they both stayed with me for another two days.”

      -Interview, Patient B

      (T2 d)He has many other complications like Parkinson's, [high] blood pressure, [high blood] sugar, heart problem, kidney, etc.; so there are risks involved in this surgery and they asked me to sign the consent form. Since I know everything, I signed the form and gave consent.

      -Interview, Carer B

      (T2 e) “Actually, I was not conscious at all throughout... The children did not tell me about my condition. The doctor told me, there is a small problem only in the test. That is all I knew. Only after the surgery was completed, I came to know about the complication. My children did not tell me anything even about the surgery… the doctor came and spoke to me but he did not mention anything about the surgery. Maybe my children must have told the doctor not to talk about the surgery as I get tensed up.”

      -Interview, Patient A

      (T2 f) “My husband and sons took decisions regarding my treatment while in hospital. It is all their choice. They [family] won't ask me anything.”

      -Interview, Patient B

      (T2 g) “I asked her if she had received any counselling during the day of the discharge. She said no one had come to see her... She assumed that since she is being discharged, the staff saw no issue with her and didn't feel the need to meet her. Her husband intervened and said that when he had gone to pay the bills, he was directed towards a counter for medication counselling. Here, he was told about the care to be taken, diet and about the medication prescribed and when to take them. The patient did not receive counselling but the carer was given one.”

      -Observation notes

      (T2 h) “I was the one who was cleaning [the wound] but I could not see anything. One day he was wearing a blue colored shirt and that was wet. At that time my daughter was taking care since I had fever. I asked my daughter why his shirt is wet over there… It then got dry and there was a stain mark. So I had a doubt and opened the shirt to check and noticed the water was oozing out of a small needle sized hole on the lower part of the surgical wound. He has slight low vision and he didn't notice the wetness on his shirt. Then I called the hospital immediately.”

      -Interview, Carer C

      (T2 i) “I don't how the infection happened. I was in the hospital… We have to share the toilet with other patients. Also, here so many visitors come to see other patients. We can't control that right? But we can do so at home. My husband and children are saying that they are going to clean up the room and not allow any visitors for 2-3 months, but in the hospital can we follow all that? So many people come here.”

      -Interview, Patient A

      (T2 j) “[After discharge], for two months, I was staying with my daughter. I and my husband were staying upstairs. Nobody would come to that floor, not even my children. My daughter would promptly bring our food and my husband was there to take care of me”

      -Interview, Patient B

      (T2 k) “We were actually careful. We used to use the hand rub every time we were approaching the room. We did not allow guests for many months. We took the decision because she has the colostomy bag and that itself is lot of infection so that may harm her more, right?”

      -Interview, Carer C

      (T2 l) “We did not hear any update from doctor. My daughter is also a doctor. She asked to find out about the culture report after the 4th day. I would ask them but they said it did not come yet”

      -Interview, Carer D
      Theme 3 (T3): Carer education is inconsistent(T3 a) “We did not receive any special instructions on dressing and IPC care after discharge. Actually I used to see how it was done, so I learned it myself and when they asked me whether I needed anything and I just said no. By that time I had learnt it.”

      -Interview, Carer C

      (T3 b) The surgical trainee informed the carer that he should keep changing the tubes after going home. He then asked if he was taught how to do it. The carer started explaining what has to be done. The trainee intervened and warned him that his hands should be clean, properly washed before he did the procedure.

      -Observation notes

      (T3 c)There is no education, per se. If they have stomas, then we have staff who go and train the carers on that. On a day-to-day basis, when we take rounds, we give them basic information, about their wounds there is no specific orientation”

      -Interview, Surgical trainee A
      HCW, healthcare worker; ICU, intensive care unit; IPC, infection prevention and control.
      Policies tend to focus on reducing the risk of infection posed by the presence and behavior of carers or identifying a role for them in encouraging health professionals to perform IPC practices, for example, challenging health professionals to wash their hands. Instead, we need to recognize them as critical resources who, if supported and educated adequately, could contribute to the care of patients in the hospital during hospitalization and in the community post-discharge. In settings where families remain at the patient bedside to assist health professionals, care roles have been largely overlooked. This implies that carers are unprepared and unsupported in these roles, receiving little training or guidance. Studies reporting on the education of family members have detailed benefits on IPC outcomes. For example, a study aiming to reduce ventilator-associated pneumonia in ICU patients using multimodal interventions including posters and ‘scripts’ prepared for the ICU team to educate family members of critically ill patients obtained a significant reduction in ventilator-associated pneumonia rates, enabling carers to participate in-patient care ().
      A study investigating the inclusion of patients and their family members in IPC policies and guidelines across Bangladesh, Indonesia, and South Korea identified that many key activities were carried out by carers, and that the degree of dependence on family members as caregivers was similar to those provided by HCWs in the global north (
      • Park JY
      • Pardosi JF
      • Seale H.
      Examining the inclusion of patients and their family members in infection prevention and control policies and guidelines across Bangladesh, Indonesia, and South Korea.
      ). Therefore, facilitating the interactions of HCWs with the carers and recognizing their roles as legitimate members of the patient care team has the potential to lead to optimized patient outcomes. This will enable carers to have a better understanding of patients’ IPC needs to supplement the important contextual information they already have with regard to patient care. Furthermore, engaging with carers in optimal practices around infection-related care in hospitals and at home may reduce the transmission of infection.
      Our review of global IPC policies identified the gap in the inclusion of carers in existing infection-related recommendations in secondary care settings. This gap may be due to several factors. Firstly, different cultural and societal norms dictate the roles that the social network of patients plays in their healthcare, as evidenced by our findings and reported in other studies (
      • Park JY
      • Pardosi JF
      • Seale H.
      Examining the inclusion of patients and their family members in infection prevention and control policies and guidelines across Bangladesh, Indonesia, and South Korea.
      ). Secondly, the different models of healthcare and the economic investment of governments in their healthcare infrastructure (

      Dyakova M. Investment for health and well-being: a review of the social return on investment from public health policies to support implementing the Sustainable Development Goals by building on Health 2020. World Health Organization, Regional Office for Europe, Health Evidence Network. https://apps.who.int/iris/handle/10665/326301, 2017 (accessed 20 July 2022).

      ) play critical roles in the need for pro bono effort from those socially connected to the patient. Thirdly, advocating for holistic carer involvement presents dilemmas about ‘semi-professionalizing’ carers, blurring the line between supporting a relative and expecting them to assume responsibilities that should belong to HCW. Equally, it presents the risk of marginalizing those patients who do not have a social network of family members or carers willing or able to assume these responsibilities. There may also be reluctance from HCW to embrace such assets as it may disrupt the patient care pathway by introducing unqualified people that they will be required to co-operate with. Furthermore, carers may be left overwhelmed as they will be required to work not only with hospital doctors and nurses but also with community HCW.
      In addition to this transactional perspective, although carers’ skills should be enhanced to provide potential benefits to clinical practice and patient outcomes, patients and their carers have the right to understand the changing circumstances of their treatment. Being outsiders to the clinical setting, patients and carers often do not know about infections and the reason for their occurrence. If due attention is paid toward improving their knowledge, this could help in the prevention and early identification of infections, thereby decreasing the additional burden of care.
      Patient involvement is increasingly seen as imperative for good and effective care, as part of a drive toward patient-centeredness – an emerging concept (
      • Karazivan P
      • Dumez V
      • Flora L
      • Pomey MP
      • Del Grande C
      • Ghadiri DP
      • et al.
      The patient-as-partner approach in health care: a conceptual framework for a necessary transition.
      ). To achieve effective infection-related care, we advocate for ‘family-centered care’, and support for carer involvement. This would involve formally acknowledging the role carers play, as well as shaping policies including those on IPC to support, promote and strengthen carer involvement. At the same time, international guidelines on patient care propose that national strategies must tailor patient and carer education to the local context, such tailoring may require the adoption and promotion of family-centeredness to fit the cultural norms and traditions.

      Limitation of study

      This study has several limitations. The transferability of the results to other contexts and settings may be limited and would require contextual consideration. The study was conducted in a hospital at the forefront of implementing interventions and policies with respect to IPC and AMS practices and sensitized to patient safety and patient experience. These characteristics may be atypical in the local or national context and may also be uncommon in other international settings (
      • Mbamalu O
      • Bonaconsa C
      • Nampoothiri V
      • Surendran S
      • Veepanattu P
      • Singh S
      • et al.
      Patient understanding of and participation in infection-related care across surgical pathways: a scoping review.
      ). Furthermore, the study was carried out in a state in India with high levels of literacy and a healthcare system featuring a comprehensive public health system with active patient and public engagement initiatives (
      • Singh S
      • Charani E
      • Devi S
      • Sharma A
      • Edathadathil F
      • Kumar A
      • et al.
      A road-map for addressing antimicrobial resistance in low- and middle-income countries: lessons learnt from the public private participation and co-designed antimicrobial stewardship programme in the State of Kerala India.
      ), which may influence the roles held and expected by carers, as well as their interest and ability to participate in care decisions, and the comfort of HCWs toward such shared decision-making.
      The research team included local and international researchers. To balance the experiences, assumptions, and beliefs the team may have had about the emergent results, open discussions were regularly held among the team members to ensure that the interpretation of the findings recognized their positioning. Co-authors SS, S Surendran and VN presented both insider and outsider perspectives in their roles. Further, senior author EC has spent a significant time in the hospital site over several years, including during her PhD studies, investigating culture and context and its influence on IPC and antibiotic prescribing behaviors (
      • Charani E
      • Ahmad R
      • Rawson TM
      • Castro-Sanchèz E
      • Tarrant C
      • Holmes AH.
      The differences in antibiotic decision-making between acute surgical and acute medical teams: an ethnographic study of culture and team dynamics.
      ,
      • Charani E
      • Smith I
      • Skodvin B
      • Perozziello A
      • Lucet JC
      • Lescure FX
      • et al.
      Investigating the cultural and contextual determinants of antimicrobial stewardship programmes across low-,middle- and high-income countries-a qualitative study.
      ;
      • Singh S
      • Mendelson M
      • Surendran S
      • Bonaconsa C
      • Mbamalu O
      • Nampoothiri V
      • et al.
      Investigating infection management and antimicrobial stewardship in surgery: a qualitative study from India and South Africa.
      ). Though contingent steps were taken to check the accuracy of the English translation of the interviews conducted originally in Malayalam – including the same local researchers conducting the interviews and cross-checking the translation – it is possible that the translation may have influenced the interpretation of the findings.
      As the objective of the larger study was the optimization of antibiotic use and IPC practices along the surgical pathway, only six patients/carers were interviewed versus 44 healthcare professionals. However, we drew from observations (including over 800 episodes of carer/patient and HCW discourse) to develop a deeper understanding of carer roles.

      Conclusion

      In the Indian context, patient carers remain an indispensable yet invisible resource for infection-related care. Current IPC guidelines and principles may have overlooked the wider sociocultural contexts, particularly in low- and middle-income countries, and the population that plays a role in the care and, by extension, decisions about IPC practices. Culture-sensitive IPC policies which embrace the roles that carers play are urgently needed. Furthermore, there needs to be a better understanding of the knowledge that patients and their carers bring to the infection-related care and practices which may influence health outcomes.

      Declarations of Competing Interest

      Enrique Castro-Sánchez is a WHO consultant in antimicrobial resistance implementation. Sanjeev Singh and Shiny Joseph are employed at the study site beyond the study's capacity. Other authors have no conflicts of interest to declare.

      Funding

      Economic and Social Research Council Grant number: ES/P008313/1. The funders had no involvement in study design, in data collection, analysis and interpretation of data, in the writing of the report, or in the decision to submit the article for publication.

      Ethical approval statement

      Ethical approval for the study was granted by the Institutional Ethics Committee at Amrita Institute of Medical Sciences (IEC-AIMS-2018-INF.CONT-005A). The study was advertised to patients, carers and HCWs in the hospital via posters on the premises of ICU, wards and the outpatient clinic. Before any data collection, participants were informed about the study aim and methods, taking written consent wherever possible.

      Acknowledgments

      This study is part of the ASPIRES project (Antibiotic use across Surgical Pathways - Investigating, Redesigning and Evaluating Systems) (https://www.imperial.ac.uk/arc/aspires/). ASPIRES aims to address antimicrobial resistance and improve clinical outcomes optimizing antibiotic usage along surgical pathways. The support of ESRC as part of the Antimicrobial Cross Council initiative supported by the seven UK research councils, and also the support of the Global Challenges Research Fund, is gratefully acknowledged. EC acknowledges support from the Hamied Foundation, Academy of Medical Sciences UK-India AMR Visiting Professorship Award. ECS is a National Institute for Health Research (NIHR) Senior Nurse and Midwife Research Leader, and acknowledges the support of the BRC. The abstract of this paper was accepted for presentation at 19th International Congress on Infectious Diseases (ICID) and is published in their online supplement.

      Authors’ contributions

      Surya Surendran contributed to data collection, analysis, original draft, subsequent editing and final draft. Enrique Castro-Sánchez contributed to data analysis, original draft, subsequent editing and final draft. Vrinda Nampoothiri contributed to data collection, analysis, and editing drafts of the manuscript. Shiny Joseph is a patient representative from India site, and contributed to access to teams, patients and carers, revision of drafts. Sanjeev Singh is country level principal investigator and contributed to study inception and access to sites, teams and data, data gathering, interpretation, and revision of drafts. Carolyn Tarrant contributed to study design, data analysis and contribution to drafts of the manuscript. Alison Holmes is study principal investigator, contributed to study inception, design, and editing of drafts. Esmita Charani contributed to study inception, design, data collection, original draft, subsequent editing and final draft.

      Appendix. Supplementary materials

      References

        • Anderson M
        • Ottum A
        • Zerbel S
        • Sethi A
        • Gaines ME
        • Safdar N.
        A survey to examine patient awareness, knowledge, and perceptions regarding the risks and consequences of surgical site infections.
        Am J Infect Control. 2013; 41: 1293-1295
        • Batalden M
        • Batalden P
        • Margolis P
        • Seid M
        • Armstrong G
        • Opipari-Arrigan L
        • et al.
        Coproduction of healthcare service.
        BMJ Qual Saf. 2016; 25: 509-517
        • Boyle B.
        The critical role of family in patient experience.
        Patient Exp J. 2015; 2: 4-6
        • Charani E
        • Ahmad R
        • Rawson TM
        • Castro-Sanchèz E
        • Tarrant C
        • Holmes AH.
        The differences in antibiotic decision-making between acute surgical and acute medical teams: an ethnographic study of culture and team dynamics.
        Clin Infect Dis. 2019; 69: 12-20
        • Charani E
        • Smith I
        • Skodvin B
        • Perozziello A
        • Lucet JC
        • Lescure FX
        • et al.
        Investigating the cultural and contextual determinants of antimicrobial stewardship programmes across low-,middle- and high-income countries-a qualitative study.
        PLoS One. 2019; 14e0209847
        • Charmaz K.
        Constructing grounded theory: a practical guide through qualitative analysis.
        SAGE Publishing, (London, UK)2006: 223
        • Gwyn Richard
        Communicating health and illness.
        SAGE Publications Ltd, London2001
        • Cooper AL
        • Brown JA
        • Salathiel J
        • Gollner S.
        An intervention to improve patient understanding and use of preoperative chlorhexidine washes.
        Infect Dis Health. 2019; 24: 194-200
      1. Dyakova M. Investment for health and well-being: a review of the social return on investment from public health policies to support implementing the Sustainable Development Goals by building on Health 2020. World Health Organization, Regional Office for Europe, Health Evidence Network. https://apps.who.int/iris/handle/10665/326301, 2017 (accessed 20 July 2022).

        • Georgia G.
        The contribution of family in the care of patient in the hospital.
        Health Sci. 2007; 1: 21
        • Karazivan P
        • Dumez V
        • Flora L
        • Pomey MP
        • Del Grande C
        • Ghadiri DP
        • et al.
        The patient-as-partner approach in health care: a conceptual framework for a necessary transition.
        Acad Med. 2015; 90: 437-441
        • Kilbride MK
        • Joffe S.
        The new age of patient autonomy: implications for the Patient-Physician Relationship.
        JAMA. 2018; 320: 1973-1974
        • Kumar S
        • Christina J
        • Jagadish AR
        • Peter JV
        • Thomas K
        • Sudarsanam TD.
        Caregiver perceptions on intensive care: a qualitative study from southern India.
        Natl Med J India. 2017; 30: 131-135
        • Mahendradhata Y
        • Souares A
        • Phalkey R
        • Sauerborn R.
        Optimizing patient- centeredness in the transitions of healthcare systems in low- and middle-income countries.
        BMC Health Serv Res. 2014; 14: 386
        • Mbamalu O
        • Bonaconsa C
        • Nampoothiri V
        • Surendran S
        • Veepanattu P
        • Singh S
        • et al.
        Patient understanding of and participation in infection-related care across surgical pathways: a scoping review.
        Int J Infect Dis. 2021; 110: 123-134
        • Miller C
        • Kapp S.
        Informal carers and wound management: an integrative literature review.
        J Wound Care. 2015; 24: 489-497
        • Murgic L
        • Hébert PC
        • Sovic S
        • Pavlekovic G.
        Paternalism and autonomy: views of patients and providers in a transitional (post-communist) country.
        BMC Med Ethics. 2015; 16: 65
      2. National Centre for Disease Control. National Guideline for Infection Prevention and Control in Healthcare facilities. https://www.mohfw.gov.in/pdf/National%20Guidelines%20for%20IPC%20in%20HCF%20-%20final%281%29.pdf, 2020 (accessed 20 July 2022).

        • Park JY
        • Pardosi JF
        • Seale H.
        Examining the inclusion of patients and their family members in infection prevention and control policies and guidelines across Bangladesh, Indonesia, and South Korea.
        Am J Infect Control. 2020; 48: 599-608
        • Parsons T.
        The social system.
        Free Press, Glencoe1951
        • Sadler E
        • McKevitt C.
        Expert carers’: an emergent normative model of the caregiver.
        Soc Theory Health. 2013; 11: 40-58
        • Sanger PC
        • Hartzler A
        • Han SM
        • Armstrong CAL
        • Stewart MR
        • Lordon RJ
        • et al.
        Patient perspectives on post-discharge surgical site infections: towards a patient-centered mobile health solution.
        PLoS One. 2014; 9e114016
        • Saunders 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: 1893-1907
        • Singh S
        • Charani E
        • Devi S
        • Sharma A
        • Edathadathil F
        • Kumar A
        • et al.
        A road-map for addressing antimicrobial resistance in low- and middle-income countries: lessons learnt from the public private participation and co-designed antimicrobial stewardship programme in the State of Kerala India.
        Antimicrob Resist Infect Control. 2021; 10: 32
        • Singh S
        • Mendelson M
        • Surendran S
        • Bonaconsa C
        • Mbamalu O
        • Nampoothiri V
        • et al.
        Investigating infection management and antimicrobial stewardship in surgery: a qualitative study from India and South Africa.
        Clin Microbiol Infect. 2021; 27: 1455-1464
        • Staff RT.
        A successful VAP prevention program.
        • Sutton E
        • Brewster L
        • Tarrant C.
        Making infection prevention and control everyone's business?Hospital staff views on patient involvement.
        Health Expect. 2019; 22: 650-656
        • Veepanattu P
        • Singh S
        • Mendelson M
        • Nampoothiri V
        • Edathadatil F
        • Surendran S
        • Bonaconsa C
        • Mbamalu O
        • Ahuja S
        • Birgand G
        • Tarrant C
        • Sevdalis N
        • Ahmad R
        • Castro-Sanchez E
        • Holmes A
        • Charani E.
        Building resilient and responsive research collaborations to tackle antimicrobial resistance-Lessons learnt from India, South Africa, and UK.
        Int J Infect Dis. 2020; 100: 278-282
        • World Health Organization
        Guidelines on hand hygiene in health care: first global patient safety challenge clean care is safer care.
        WHO Guidelines Approved by the Guidelines Review Committee, 2009 (accessed 20 July 2022)
      3. World Health Organization. Improving infection prevention and control at the health facility: Interim practical manual supporting implementation of the WHO guidelines on core components of infection prevention and control programmes. https://apps.who.int/iris/handle/10665/279788, 2018 (accessed 20 July 2022).

      4. World Health Organization. Minimum requirements for infection prevention and control programmes. https://apps.who.int/iris/handle/10665/330080, 2019 (accessed 20 July 2022).

        • Worthington RP
        • Gogne A.
        Cultural aspects of primary healthcare in india: a case- based analysis.
        Asia Pac Fam Med. 2011; 10: 8