Making infection prevention and control everyone's business? Hospital staff views on patient involvement

Abstract Context Ensuring an infection‐free environment is increasingly seen as requiring the contribution of staff, patients and visitors. There is limited evidence, however, about how staff feel about collaborating with patients and relatives to co‐produce that environment. Aims This study aims to understand how hospital staff perceive the involvement of patients and relatives in infection prevention and control (IPC) and the main challenges for staff in working together with patients and relatives to reduce the threat of infection. Methods Qualitative semi‐structured interviews were conducted with 35 frontline health‐care professionals and four executive staff, from two hospital trusts. Findings We found that staff were more supportive of approaches that encourage co‐operation from patients and relatives, than of interventions that invoked confrontation. We identified challenges to involvement arising from staff concerns about shifting responsibility for IPC onto patients. Staff were not always able to work with patients to control infection risks as some patients themselves created and perpetuated those risks. Conclusions Our work highlights that IPC has particular features that impact on the possibilities for involving patients and relatives at the point of care. Staff acknowledge tensions between the drive to involve patients and respect their autonomy, and their duty to protect patients from risk of unseen harm. The role that patients and relatives can play in IPC is fluctuating and context dependent. Staff responsibility for protecting patients from the risk of infection may sometimes need to take priority over prerogatives to involve patients and relatives in the co‐production of IPC.


| INTRODUC TI ON
The much-repeated mantra that infection prevention and control (IPC) is "everyone's business" 1 is frequently understood to include not only staff of all roles and grades, but also patients and their relatives, all of whom are seen as stakeholders with a part to play in achieving IPC goals. There is limited evidence, however, about how staff feel about working together with patients and relatives to coproduce that environment, or the specific challenges that staff perceive in relation to involving patients in IPC.
Co-production in health care has patient involvement at its heart, recognizing the equal importance of both professional and patient knowledge in coming together to ensure that the service meets the needs of the user, and to improve the quality of care provided. [2][3][4] Co-production has its origins in two main camps-(a) the democratic ideal that emphasizes citizen rights and the "co-production of public good" and (b) the shift away from viewing patients as passive recipients of health care to more informed engaged participants in the health-care process. 3 While co-production can happen at various points across the design, delivery and evaluation of care, most co-production activities targeting health-care improvement take place away from the bedside, and consist of specific improvement projects in dedicated group-work spaces. 2,5 Existing approaches to co-production have attracted criticism for potentially conceptualizing the service users contribution as an "add on" to improving services, rather than seeing service users as integral at the outset. 6 Knowing when and how to involve patients and relatives meaningfully in the joint endeavour of preventing infection is complex.

| Patients' roles in IPC
Patients have been identified as having a potentially important role in monitoring and encouraging good IPC practices, 7-10 with some studies reporting, for example, that involving patients as observers of hand hygiene practices improves clinician adherence. 11,12 Despite this, evidence suggests that staff and patients have some reservations about patient involvement in IPC, particularly where this comprises patients challenging staff about their practices. 11,12 While many patients are, in theory, willing to ask staff to wash their hands, they are often unwilling to do so in practice. 7,[13][14][15][16] Patients and relatives report barriers to acting as "vigilant monitors" 17 by monitoring their care and speaking up about concerns: including fear of the consequences of raising concerns; a respect of medical authority that makes them reluctant to question staff about their behaviour 18 ; and a desire to avoid disturbing busy nursing staff by asking questions. 19 Patients may also lack volition 17 to be involved in IPC due to feeling ill or vulnerable, or feeling that they lack the skills or knowledge.
Evidence suggests that patients have limited understanding of infection risks and this may be a significant barrier to playing an active part in efforts to reduce these risks. 13,20,21 If patients are to be involved in IPC, then frontline healthcare staff need to be engaged and empowered to support patient involvement. 21,22 Staff efforts to support and encourage patients to play a role in IPC can break down barriers and reassure patients that they have an important role to play. 16 The way that patient and relative feedback is received and managed by staff is a critical factor influencing how comfortable patients feel about speaking up, 23 but staff may find being questioned by patients difficult to handle. 24 While there have been a number of studies of patients' views on their involvement in safety and IPC, little is known about staff views and attitudes towards patient and relative involvement in IPC.
This article is drawn from research that identified and synthesized the evidence from infection prevention initiatives with qualitative case studies in two hospital NHS trusts. 25 From this, our article aims to understand how hospital staff perceive the involvement of patients and relatives in the co-production of IPC in practice, and to highlight the main challenges that impact on collaborating with patients and relatives to reduce the threat of infection on hospital wards.

| ME THODS
Semi-structured interviews were conducted with nursing and support staff purposively sampled from two hospital trusts in England, and staff with management and executive responsibilities including hospital-wide responsibility for IPC. Participants (n = 29) were initially recruited from six medical and surgical wards in one trust. In order to provide a wider range of hospital environments, a further ten participants were recruited from intensive care and accident and emergency in the second trust. One trust was a teaching hospital NHS trust and one a university hospital foundation trust. Data were collected as part of a wider study looking at current knowledge and best practice in IPC in the UK. 25 Interviews used a structured schedule, designed to explore staff Data were analysed using the constant comparative method, 26,27 aided by the use of NVivo 11 software. Using the initial themes from a systematic literature review conducted as part of the wider study, a preliminary coding framework was developed. This framework was used to code the data, and was refined iteratively through close reading of the transcripts and data coding. The advantage of this approach to qualitative data analysis is the closeness to the "raw" data and the ability to generate meaning and theory from it iteratively. 28 We explored themes around staff perceptions of patient and relative involvement in IPC, and barriers and challenges identified by staff in involving patients and relatives until data saturation was reached.
User views on the study as a whole were sought through a public consultation event facilitated by the research team in collaboration with Opinion Leader and the Patients Association, which included a sample of 15 carers and 26 patients recruited from across London. A multi-stakeholder advisory board provided guidance throughout the study process. Members included: patients' representatives, healthcare practitioners and experts in IPC, health systems, psychology, sociology and organizational analysis.

| Ethics
Written informed consent was obtained prior to interview, and fully anonymized. Under the NHS Research Governance Framework, the study was constituted as a service evaluation and registered with each organization as such. Ethical approval was also granted by the University of Leicester's research ethics committee.

| FINDING S
Interviews were conducted with 35 frontline staff based in a range of clinical areas: intensive care; accident and emergency; and wards including elderly medicine, rehabilitation, gastroenterology and infection isolation. We also interviewed four members of senior management who were involved in implementing IPC interventions.
Participants included medical directors, nurse consultants, matrons, ward managers, ward sisters, staff nurses, clinical support workers, student nurses, health-care assistants and senior infection control nurses. We identified three broad themes: patient involvement as partnership or conflict; concerns about shifting responsibility for IPC; and patients as "risky bodies". 29,30

| Patient/relative involvement in IPC as partnership or conflict?
Staff expressed the view that involving patients and relatives in IPC was a good idea in principle. On the whole, staff were most supportive of approaches that involved patient co-operation with self-care practices, such as encouraging patient use of hand wipes. Sharing some responsibility with patients for aspects of IPC that were within patients' own control was felt to help foster a partnership where patients and staff could work together to achieve goals of effective IPC. Staff engagement with this approach was reinforced when they saw that it was not disruptive, and that patients were compliant with the goal of reducing the risk of transmissible infections.

| Patient/relative involvement and responsibility for IPC
Staff reported some concerns that efforts to involve patients in co-producing IPC could mean shifting responsibility onto patients

| Negotiating patient co-operation
Although approaches that involved working co-operatively with patients and relatives, including encouraging hand hygiene, were preferred in principle, these were dependent on patient and relative willingness to work together with staff towards IPC goals.
While this was often unproblematic, staff did not always feel that their attempts to encourage patients and relatives to play a shared part in IPC were welcomed. In the case of providing patients with hand wipes, the aim was to make it as easy as possible for patients to clean their hands before eating and reduce the risk of infection, but staff sometimes found that patients were unwilling to co-operate. They argued that patients did not always understand the rationale for being given hand wipes, and sometimes declined to

| Ethical concerns about burdening patients and relatives
Further to the concerns about undermining trust, some staff also expressed concerns about the ethics of placing an additional burden of responsibility on patients and relatives by expecting them to participate actively in IPC efforts. Staff argued that patients and relatives could not always be expected to play an active role in coproducing IPC: patients were often very sick or in pain, and relatives were often distressed and overwhelmed by the experience of their loved one being acutely or seriously unwell in hospital. The context of the ward had an impact: in the ICU, and similarly in other settings when a patient was acutely ill, asking relatives and visitors to challenge health-care workers could at times be seen as unethical or inappropriate.
We had badges encouraging the staff, and we had signs encouraging the patients to ask. I think it's a good idea, in theory, but… it has limitations… The majority of our patients, it's an acute admission, they're in pain, they're in distress, they're in discomfort.
(Senior charge nurse 39) Obviously people's relatives can be quite distraught in that situation. To be honest it's probably the last thing they're thinking about. (Nurse 38) In the accounts of staff, it was clear that for some patients, optimizing IPC was about findings ways to work around the challenges presented by "risky bodies", 29,30 rather than working in partnership with patients and involving them actively in co-producing good IPC practice. There seemed to be no easy solutions to these problems and no evidence from the literature, with nurses working on a case-by-case basis to keep patients as safe as possible.

| Summary of findings
This study aimed to understand staff views of patients and relative involvement in aspects of IPC. Approaches founded in encouraging co-operation and compliance, as opposed to invoking conflict and challenge, were seen as more acceptable and effective ways of involving patients and relatives in the co-production of IPC. Staff could, however, sometimes find it difficult to secure compliance to IPC practices including the use of wipes and handwashing from patients and relatives, and were unsure how to tread the line between respecting individuals' autonomy, and performing their duty to protect patients from the risk of infection. Staff were concerned that asking patients and relatives to speak up about IPC placed too much obligation on patients and relatives to monitor safety, and could undermine trust and threaten the relationships between staff and patient.

| Strengths and limitations
Our study highlights the tensions evident in the operationalizing the aspiration of IPC as "everybody's business" through involving patients and relatives in the co-production of safer health care: between the moral imperative to empower patients as partners in their health care, 31 and the risk of over-burdening vulnerable patients and shifting responsibility from the professional onto the patient. 16,17,20 Our study is limited in that it included only two hospital sites, but participants were sampled to ensure a range of job roles and experience. The discussion was focused on potential interventions, but the majority of staff had experienced one of more of the interventions in practice, and were also able to discuss other approaches to involving patients and relatives in IPC that they had experienced.

| Comparison with previous literature and implications for practice
Co-production models suggest that rather than shifting the onus from the professional onto the patient for ensuring safety, 32 there is a need to establish shared goals as a first step to working together, and for explicit sharing, rather than handing over, of responsibility. Staff felt that patients and relatives were sometimes willing to take on some responsibility for IPC, but that the ability to be involved could change over time depending on circumstances. This indicates that a more nuanced approach to involvement may be required. Patient and relative capacity and willingness to be involved in IPC should be seen as context specific and fluctuating, 33 and in a similar way to arguments that have been made for consent to research, staff may need to re-negotiate the level and nature of involvement as circumstances change. 34 Staff also recognized that regulating and controlling "risky bodies", 30 36 Staff may also need access to training, support and guidance on producing "good enough" IPC in ways that take into account individual patient circumstances.
We studied the involvement of patients and relatives in the co-production of IPC in the context of care delivery: effective approaches to co-production of IPC are likely to require strategies that lie beyond the point of care. One way to address these issues may be to collaborate either earlier or later in the care process and/ or to use different techniques, to enable a dialogue without consequences between health-care professional and patients. For example, Wyer et al show how video reflexive technology, when used with patients and clinicians together, enabled clinicians to reflect on their IPC practices. Patients felt able to raise issues "through a third party" and reduced the potential for patients and staff to deal with confrontational moments; "brokering new relationships between them". 37 There is value in involving patients and relatives beyond the point of care, either during the intervention design stage or following discharge to support collaborative working in IPC. This would help staff to optimize their IPC practice when patients lack capacity or present IPC risks. Our study highlights the need for further research in this area.

| CON CLUS IONS
Efforts to achieve genuine and appropriate patient and relative involvement need to take into account staff motivation to collaborate with patients and relatives in optimizing IPC, and the barriers they see in involving patients in IPC. Our work describes staff views on the challenges of involving patients in co-producing IPC as part of care delivery. Establishing how and when to engage patients and relatives to play a role in co-producing IPC at the point of care can be complex, and our work highlights the need to explore how staff can be supported to make ethical and appropriate decisions about involving patients and relatives that address individual characteristics and needs. Staff responsibility for protecting patients from the risk of infection may sometimes need to take priority over prerogatives to involve patients in the co-production of IPC.

ACK N OWLED G EM ENTS
We thank Mary Dixon-Woods, Alison Holmes, Raheelah Ahmed, Federica Secci and Enrique Castro Sanchez for their input into the research design. We thank Raheelah Ahmad for conduct of four of the interviews.

CO N FLI C T O F I NTE R E S T
The authors declare no conflicts of interest with respect to the authorship or the publication of this article.