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“Why must I get an infection, especially after surgery?” opportunities for patient engagement in infection care

Published online by Cambridge University Press:  17 September 2025

Oluchi Nneka Mbamalu*
Affiliation:
Division of Infectious Diseases and HIV Medicine, Department of Medicine, Groote Schuur Hospital, University of Cape Town, Cape Town, South Africa Global Surgery Division, Department of Surgery, Groote Schuur Hospital, University of Cape Town, Cape Town, South Africa
Estelle van Tonder
Affiliation:
Medical School, Department of Medicine, University of Cape Town, Cape Town, South Africa
Ebruphiyo Ruth Useh
Affiliation:
Institute for Life Course Health Research, Department of Global Health, Stellenbosch University, Cape Town, South Africa
Bongeka Mfeketo
Affiliation:
Synergy Biomed Research Institute, East London, South Africa
Okuhle Pretty Mbengo
Affiliation:
AFDA Film School, Cape Town, South Africa
Adam Boutall
Affiliation:
Colorectal Unit, Groote Schuur Hospital, University of Cape Town, Cape Town, South Africa
Timothy Pennel
Affiliation:
Chris Barnard Division of Cardiothoracic Surgery, Groote Schuur Hospital, University of Cape Town, Cape Town, South Africa
Lebohang Moloi
Affiliation:
Acute Care Surgery Division, Department of Surgery, Groote Schuur Hospital, University of Cape Town, Cape Town, South Africa
Salome Maswime
Affiliation:
Global Surgery Division, Department of Surgery, Groote Schuur Hospital, University of Cape Town, Cape Town, South Africa
Esmita Charani
Affiliation:
Division of Infectious Diseases and HIV Medicine, Department of Medicine, Groote Schuur Hospital, University of Cape Town, Cape Town, South Africa Faculty of Health and Life Sciences, University of Liverpool, Liverpool, United Kingdom
Marc Mendelson
Affiliation:
Division of Infectious Diseases and HIV Medicine, Department of Medicine, Groote Schuur Hospital, University of Cape Town, Cape Town, South Africa
*
Corresponding author: Oluchi Nneka Mbamalu; Email: oluchi.mbamalu@uct.ac.za

Abstract

Objective:

We explored the awareness, perspectives, and experiences of patients and healthcare providers (HCPs) regarding opportunities for surgical patients to engage in infection care.

Design:

Qualitative research design.

Setting:

Tertiary academic hospital, Cape Town, South Africa.

Participants:

79 patients and 22 carers were observed during interactions with HCPs, and interviews were conducted with 19 patients, 3 carers, and 8 HCPs.

Methods:

Data were collected through nonparticipant observations of surgical wound care and patient consultations, and in-depth semi-structured interviews using data collection guides. Data were coded inductively, aided by NVivo software (version 14) and themes identified.

Findings:

Three main themes emerged from the data: patient’s healthcare knowledge following surgery, patients’ experiences of surgical site infection, and patients’ experiences as users of the healthcare system. Care discussions were largely driven by the doctor, and focused on the patient’s condition, associated diagnostic tests and medicines, and wound care. Patients’ contributions were mostly passive, as recipients of information and respondents to doctors’ questions. Most patients expected HCPs to initiate engagement and were unaware of healthcare-associated infections before developing one.

Conclusions:

Our data highlight a need to strengthen postdischarge wound care. The presentation and delivery of information in patient-facing and relatable formats can improve patient and carer understanding of surgical infection risks and care, and help support and advance patients’ roles as co-stakeholders in infection care for improved health outcomes.

Information

Type
Original Article
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
© The Author(s), 2025. Published by Cambridge University Press on behalf of The Society for Healthcare Epidemiology of America

Introduction

Surgical site infections (SSIs) complicate surgical outcomes, particularly in low- and middle-income countries (LMICs)Reference Biccard, Madiba and Kluyts 1 . They contribute to mortality (up to 38% of postoperative deaths) and economic costs (additional costs from $174 to $29610 per patient). Reference Monahan, Jowett and Pinkney2,Reference Mwita, Ogunleye and Olalekan3 Ongoing efforts to prevent SSIs and improve antibiotic prescribing and use in African hospitals are on the increase, with focus on guideline implementation for infection prevention and control (IPC), antibiotic stewardship programs, healthcare worker training and capacity building, and infrastructure improvement. Reference Saleem, Godman and Cook4,Reference Siachalinga, Mufwambi and Lee5 South Africa’s Antimicrobial Resistance (AMR) National Strategy Framework and facility-based antimicrobial stewardship programs (AMS) aim to improve antibiotic prescribing. 6,Reference Messina, van den Bergh and Goff7

With patients and families among the stakeholders involved in postoperative management of surgical wounds, their roles are crucial for surgical infection outcomes. Strategies to improve outcomes have, however, predominantly focused on healthcare provider (HCP) roles. Reference Tartari, Weterings and Gastmeier8 Research has highlighted the missed opportunities and key roles for engaging surgical patients in infection care. Reference Tartari, Weterings and Gastmeier8,Reference Mbamalu, Bonaconsa and Nampoothiri9 Patient involvement in preventing or managing infections such as SSIs and patient engagement in AMS have been proposed as suitable additional strategies for infection care bundles. Reference Tartari, Weterings and Gastmeier8Reference Agreli, Murphy and Creedon11

To participate in IPC and AMS, patients need an appreciation of the burden that AMR places on global healthcare systems, including worse outcomes, increase in length of hospital stay, and increased health expenses in LMICs, including Africa’s often-fragile healthcare systems. Reference Godman, Egwuenu and Wesangula12Reference Lewnard, Charani and Gleason14 This research explored the experiences of patients and HCPs, identifying opportunities for patient and carer engagement in infection-related care.

Methods

Study design

Qualitative research design comprising nonparticipant ethnographic observations and in-depth participant interviews. Data were collected using modified versions of previously developed data collection guides (Appendices AC). Reference Charani, Ahmad, Rawson, Castro-Sanchèz, Tarrant and Holmes15 Study participation was voluntary; participants could decline participation, with no risk of prejudice. Reference Oben16

Study setting and participants

The study was conducted in the outpatient departments of the acute care (Specialty A), colorectal (Specialty B), and cardiovascular and cardiothoracic (Specialty C) surgery specialties at Groote Schuur Hospital, a tertiary academic public referral hospital in Cape Town, South Africa. Participants were adult patients, or their carers, who visited the specialties for surgery-related care or follow-up, and HCPs involved in their care.

Patient and public involvement

All patients, carers, and HCPs present during the outpatient case who had consented to participation were included in the ethnographic observations. Semi-structured interviews were conducted with patients who had a confirmed SSI and their carers (when available), following receipt of written informed consent. All participant information was anonymized prior to analysis and for presenting study findings.

Data collection

Data were collected from May 2022 to March 2023, until saturation was reached. Participants were invited to participate when they visited the selected out patient clinics. Participants could decline participation at any time, even after initially approving. While observations were not envisaged to alter patient care, researchers refrained from observation when they felt a particular patient/HCP would prefer so or when they thought it might negatively impact patient care; for instance, if there was limited space in the observation area. Observations were documented in field notes with identifiers anonymized.

Interviews took place at the participant’s convenience, away from clinical duties or care in either English, Afrikaans, IsiXhosa, or a mixture of these. Semi-structured interview guides featuring open-ended questions allowed for follow-up of new ideas that emerged during the interview. Interviews were audio-recorded, transcribed verbatim, and identifiers anonymized for data presentation.

Data analysis

Data from observations and interviews were coded using NVivo (version 14). Inductive coding facilitated pattern identification in the data, which were further streamlined into themes. Data collection using more than one method, reflexivity, and discussions of emerging themes ensured rigor. We employed Oben’s Reference Oben16 conceptual framework to explore patients’ experiences of illness and healthcare services, commencing when an individual starts moving along the care continuum until recognized as a “patient” at disease onset or presentation to a healthcare facility. Further along this pathway, the “patient” becomes a “user” on interacting with the healthcare system and HCPs, and utilizing healthcare services.

Results

Participant characteristics

Data collectors observed 79 patients and 22 carers for over 50 hours in total, during patient-HCP interactions (cases of wound dressing or consultations with surgeon) . From the patient cohort, interviews were conducted with 19 patients who said they had experienced an SSI, 3 carers, and 8 HCPs (Table 1). The most (15/19) of patients were referred from private doctors’ rooms, community healthcare centers, and district and regional healthcare facilities.

Table 1. Demographic details of participants interviewed according to gender, age, and care specialty

Specialty A: acute care surgery; Specialty B: colorectal surgery; Specialty C: cardiovascular and thoracic surgery..

Thematic analysis of field notes and transcripts identified three main themes. Complementary quotes are referred to by the Quote Number (Appendix D).

Patient’s healthcare knowledge following surgery

Gaps in the discharge pathway

Concerning patients’ postsurgery experiences, observations, and interviews highlighted limited awareness of how to differentiate normal wound healing compared to evolution of an SSI that is, some patients did not know what to look out for or how to care for their wounds (Q1, Q2).

SSIs reportedly occurred postdischarge. Patients who delayed presenting for SSI care mentioned not being aware of the extent of the complication. Occasionally, patients reported not receiving discharge information or guidance. HCPs who reflected on this clarified that patients received discharge information, including wound care information and sites for follow-up care; however, challenges were noted during follow-up at some primary healthcare centers after discharge (Q3, Q4).

Discharge information guidance and facilitators

A patient’s social circumstances impacted on wound care. Patients who had an accompanying carer present when discharge information was provided, handled self and wound care better, as care guidance was more likely to be remembered (Q5, Q6). Whilst some participants recalled being provided with discharge information, patient feedback highlighted the detrimental effect of pain and exhaustion on information recall.

The data point to a lack of ownership regarding responsibility for providing wound care and postoperative care information on discharge from the hospital. Patients could not identify who was supposed to have provided them with discharge information, particularly on wound care. There was no consensus on the best time or platform for patient engagement on postdischarge infection care; participants had varied preferences for preadmission, inpatient stay, and during discharge. They were equally neutral on how the information should be provided, that is, verbal, written, or accessible digital formats.

Lack of awareness of healthcare-associated infections

Almost all interviewed patients had SSI as a postoperative complication before or around the study time. Patients were generally unaware of HCAI risks and did not hitherto consider infection risk among potential complications of hospitalization. The hospital was seen as a place of minimal infection risk given its clean appearance (Q7 – Q11). Participant’s knowledge and awareness of SSIs generally occurred after the participant or someone close to them had suffered an SSI, which increased their dedication to infection prevention measures (Q7 – Q11).

While some participants perceived patient engagement and awareness of infection risks as essential to prevent infections, others preferred to be unaware of such risks, reasoning that it was not inevitable that it would be helpful (Q12, Q13). Patients who recalled infection risk information were more aware of HCAI risks (Q11, Q14).

None of the interviewed patients expressed awareness regarding AMR when first mentioned. On further questioning and with more in-depth discussions, participants recalled infections suffered by others, that seemed to describe resistance, as they referred to “infection(s) that could not be treated.”

Participants did not report receiving AMR information from HCPs. In interviews with nurses, they reflected on not being privy to patients’ AMR laboratory results unless such was communicated by the doctor. As patients’ culture results were not enclosed in their folders, nurses felt incapable of counseling on antimicrobial-resistant infection risks and care unless the doctor had informed them about the resistance profile of the bacterium causing an infected wound. When not communicated, nurses assumed the wound infection was susceptible and not resistant to treatment, which influenced their AMR communication or lack thereof.

Patients’ experiences of surgical site infection

Infections were noted to negatively affect well-being. Patients’ experiences of the interval between discharge and SSI development resulted in a sense of diminishing quality of life and inability to partake in meaningful personal experiences. Examples were an inability to breastfeed or bond with their new-born baby, inability to relate with social contacts, or return to presurgery lifestyle, dependence on others, and loneliness (Q15, Q16). These negative experiences were exacerbated by limited psychosocial support, especially for those with pivotal events (Q17 – Q19).

Patients’ experiences as users of the healthcare system

Patients’ engagement experiences with healthcare providers

Intentional HCP engagements with patients were positively perceived and deemed empowering. As users of healthcare services, feeling heard encouraged patients to discuss issues with the HCP and improved care experiences (Q20 – Q23). In cases where this communication was lacking, patients reported poor healthcare experiences.

Patients who asked questions received additional information on care dynamics, compared to those who did not. Patients generally assumed that HCPs would initiate engagement where needed and consequently, did not think they had to proactively initiate communication. This was underscored during interviews when a participant explained why she did not ask questions about her care (Q25)? In some cases, patients did not know what to ask or how to initiate communication regarding their care. Some reported discussions with a HCP or family as helpful guidance, which empowered them to ask questions about their care (Q26, Q27).

In Figure 1, an example of patient-HCP communication during consultation with a doctor is presented; infection-related communication was limited except when a patient’s wound was infected and in the wound dressing clinic, focused predominantly on wound care.

Figure 1. Care discussion initiators, recipients, and topics for a patient during consultation with a doctor in specialty A. This Figure illustrates the discussions which were observed to mostly be initiated by the doctor (inner ring), with the patient generally a recipient of information or respondent to questions (middle ring) on the various topics (outer ring). Discussions initiated by the patient were related to their care and clarification regarding medicine use for their condition..

Poor healthcare provider-patient engagement and experiences

Notable barriers to patients engaging in their infection-related care discussions included fear, patient exclusion from care discussions, and previous negative healthcare experiences such as surgical complications and evasive responses (Q27 – Q31). Such barriers influenced patient presentation for hospitalization and treatment (Q32).

Some patients mentioned that initiating engagement may be misconstrued as unhelpful interruption. HCPs considered this and acknowledged their role as patient and care advocates, and the crucial nature of patient engagement for care progress (Q33, Q34).

Discussion

In this research, we captured the views of patients carers, and HCPs on surgery-related infection care and explored opportunities for patient engagement. Click or tap here to enter text. Our study findings underscore how SSIs impact patient and family well-being and quality of life, as noted in previous studies. Reference Rowland, Lindberg-Larsen, Santy-Tomlinson and Jensen17Reference Mitchell, Northcote and Rickett19

Our findings revealed a dynamic journey. According to Oben’s framework, the patient begins as an individual in relatively good health postsurgery, prior to SSI development. The patient is nested within a social context where they are supported by family and informal carers. At SSI occurrence, the patient experience shifts dramatically as they move from uncomplicated postsurgery recovery to one requiring SSI treatment. During this time, the patient faces a stage marked by diminished quality of life due to negative effect by the SSI, and a heightened need for psychosocial support. Subsequently, the patient, continuing this journey within the healthcare system, is recognized as a service user, retaining their initial identity as an individual seeking healthcare—like the condition in which they had initially approached the health facility prior to surgery.

We noted gaps in patients’ knowledge of postsurgical self-care, HCAI awareness, and psychosocial support. Several patients were poorly equipped to assess progress of surgical wound healing, following discharge. Reference Rowland, Lindberg-Larsen, Santy-Tomlinson and Jensen17 As such, infection care needs and conditions may go unrecognized by patients who, away from the hospital, manage discrete infection-care risks and care routines as they arise. Inadequate information and communication related to patient care can result in limitations to patients’ navigation of the healthcare journey, 18,Reference Mbamalu, Bonaconsa and Nampoothiri9 as noted in this study. However, patients provided with discharge information fared better with postop wound care. 18 These findings underscore a need to improve discharge planning as a tool to reduce infection complications as low-level and poor quality of discharge education is known to decrease patient readiness for hospital discharge. Reference Mitchell, Northcote and Rickett19 Discharge care information should be provided at an appropriate time for patient engagement, which may differ case by case. Reference Mbamalu, Bonaconsa and Nampoothiri9 Subsequently, information recall by accompanying carers stresses carer roles in patient care and the need for their inclusion in patient-centered infection care programs. Reference Kemp, McCormack, Chan, Santana and Quan20,Reference Pieper, Sieggreen and Nordstrom21

It is also evident that shortfalls in patient education—whether due to insufficient instruction, ineffective delivery, or patient’s inability to engage at the time—are associated with adverse patient outcomes. Research highlights systemic challenges, such as unclear accountability for education, contributing significantly to this problem. For instance, Lau et al. (2016) and de Silva (2011) noted that organizational ambiguity and structural barriers in primary care often lead to an evidence-to-practice gap, affecting both patient engagement and care continuity, Reference de Silva22 and patient empowerment through education is effective only when established processes exist to verify understanding and ensure accountability. Reference de Silva22,Reference Lau, Stevenson and Ong23 Additionally, Dineen-Griffin et al. (2019) emphasized the need for systematic approaches that go beyond mere information delivery to incorporate structured feedback, ultimately enhancing self-management. Reference Dineen-Griffin, Garcia-Cardenas, Williams and Benrimoj24 These studies collectively reinforce the importance of distinguishing between a lack of education and suboptimal educational delivery, each of which requires distinct strategies to improve patient outcomes.

Another observation, through our interviews, was the participants’ limited awareness of HCAIs such as SSI and AMR. Most participants were referred from one or more facilities before presentation at the study site, given the site’s function as a tertiary facility. Participant’s limited AMR awareness, even after such referrals, highlights an early gap in patient engagement across the healthcare continuum.

Although previous research has also documented patients’ insufficient knowledge and misconceptions of HCAI, Reference Henderson and Zernike25Reference Tobiano, Webber, Latimer, Kang and Perger27 our findings, together with a nonrandomized survey conducted at this study site, indicated that patients may recognize specific infection care terms when described. Reference Useh, Mfeketo and Mbengo10 Other studies among patients in South Africa highlight issues of comprehension related to antibiotics and AMR when these terms do not exist in the native language. Reference Sono, Mboweni and Jelić28Reference Mokoena, Schellack and Brink30 These findings support the need to address language challenges when communicating infection care and AMR information for patient and public audiences. Reference Surendran, Castro-Sánchez and Nampoothiri31Reference Bakhit, Mar, Gibson and Hoffmann33

Generally, continuity of wound care postdischarge emerged as another critical issue, most patients having been referred to the primary healthcare facility nearest to their residence. However, some patients reported poor experiences and felt their surgical wound condition worsened at these facilities, resulting in their preference for care and follow-up at the tertiary care level study site. Such care continuity at tertiary care level can obstruct referral pathways. However, we acknowledge that patients interviewed in our study had complicated wounds, possibly needing specialist wound-care attention, precipitating their referral to the study site.

The experiences of our interviewed patients traversed multiple domains, which overlapped most of the nine domains reported by Kemp et al. Reference Kemp, McCormack, Chan, Santana and Quan20 These support similarities in domains of healthcare experiences across different settings (eg, communication with HCPs regarding medicines, staff responsiveness, cleanliness of healthcare facility, discharge information) and the importance of such domains for evaluating patient experiences. With AMR often unknown to patients, developing patient-facing materials to raise AMR awareness among patients, carers, and the public would be beneficial. In line with COVID-19 experiences, AMR-related data could be presented with charts and relatable graphics in patient-facing and community-facing formats. Short- and medium-term strategies, supported by universities, can enhance HCP–patient communication in both hospital and ambulatory settings. Furthermore, exploring experiences in surgical infection care shows that professionals should initiate engagement, and patients need support to ask questions and get involved. These findings are timely and align with ongoing national and global efforts to strengthen healthcare systems since the COVID-19 pandemic, Reference Wang and Zhang34 emphasizing the role of informed and involved patients in achieving better care outcomes.

This study benefits from several strengths, including the use of structured data collection guides, methodological triangulation, and involvement of diverse data collectors, including members of the public, which enriched the data with varied perspectives. It also employed local languages, enhancing inclusivity. Our data may have been biased by participant’s recall, and the researchers’ presence may have influenced participant responses. Additionally, purposive sampling of individuals who reported SSIs may limit the generalizability of findings.

Despite this, the study offers valuable insights with practical implications. It underscores the need for care managers to strengthen infection safety nets beyond hospital discharge, which may involve partnerships to improve accessibility. Through the healthcare pathways of various facilities, patient management teams need to factor in patient education on HCAIs to promote patient engagement in infection prevention.

Conclusions

This study highlights an opportunity for care managers to consider infection care safety nets for patients in the continuum of care, especially outside the hospital. These can involve partnerships to make postdischarge wound care more accessible.

Strengthening infection safety nets beyond hospital discharge and improving public-facing communication on AMR are essential steps toward better engagement and outcomes. The, experiences and feedback of patients without infection complications could be used, along with the experiences reported in our study, to inform quality improvement initiatives for patient care.

Supplementary material

The supplementary material for this article can be found at https://doi.org/10.1017/ash.2025.10062.

Acknowledgements

The authors express their gratitude to all the patients, patient carers and healthcare staff who participated in the study. Authors are also indebted to the contributing surgical and outpatient staff and acknowledge Jean Fourie for editing assistance.

Author contribution

OMba was responsible for the study’s conception and design, with oversight from EC and MM. OM, EvT, RU, BM, and OMbe were involved in data collection. OMba and EvT analyzed the data and wrote the first draft of the manuscript. All authors contributed to manuscript editing and revision, read and approved the submitted version of the manuscript.

Financial support

This work is based on research supported partially by the National Research Foundation of South Africa (Grant Number: TTK200414512997, OMba). MM acknowledges funding from Wellcome Trust (Grant 226690/Z/22/Z). The funders were not involved in the study design, data collection, analysis and interpretation of data, report writing or the decision to submit the manuscript for publication.

Competing interests

The authors declare no conflicts of interest.

Ethical standard

We obtained approval for this research study from the Human Research Ethics Committee at the University of Cape Town (Ref: 320/2021). Interviews were conducted only on receipt of signed informed consent from all participants. Participation in the study was voluntary, with no risk of prejudice, and participants were made aware of this. We anonymized all participant-related information for data presentation.

Footnotes

#

The research was conducted when the author was affiliated with the Division of Infectious Diseases & HIV Medicine, Department of Medicine, Groote Schuur Hospital, University of Cape Town, Cape Town, South Africa.

##

The research was conducted when the author was affiliated with the School of Public Health, Faculty of Health Sciences, University of Cape Town, Rondebosch, Western Cape, 7925, South Africa.

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Table 1. Demographic details of participants interviewed according to gender, age, and care specialty

Figure 1

Figure 1. Care discussion initiators, recipients, and topics for a patient during consultation with a doctor in specialty A. This Figure illustrates the discussions which were observed to mostly be initiated by the doctor (inner ring), with the patient generally a recipient of information or respondent to questions (middle ring) on the various topics (outer ring). Discussions initiated by the patient were related to their care and clarification regarding medicine use for their condition..

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