A 5‐facet framework to describe patient engagement in patient safety

Abstract Background Health care remains unacceptably error prone. Recently, efforts to address this problem have included the patient and their family as partners with providers in harm prevention. Policymakers and clinicians have created patient safety strategies to encourage patient engagement, yet they have typically not included patient perspectives in their development or been comprehensively evaluated. We do not have a good understanding of “if” and “how” patients want involvement in patient safety during clinical interactions. Objective The objective of this study was to gain insight into patients’ perspectives about their knowledge, comfort level and behaviours in promoting their safety while receiving health care in hospital. Methods The study design was a descriptive, exploratory qualitative approach to inductively examine how adult patients in a community hospital describe health‐care safety and see their role in preventing error. Results The findings, which included participation of 30 patients and four family members, indicate that although there are shared themes that influence a patient's engagement in safety, beliefs about involvement and actions taken are varied. Five conceptual themes emerged from their narratives: Personal Capacity, Experiential Knowledge, Personal Character, Relationships and Meaning of Safety. Discussion These results will be used to develop and test a pragmatic, accessible tool to enable providers a way to collaborate with patients for determining their personal level and type of safety involvement. Conclusion The most ethical and responsible approach to health‐care safety is to consider every potential way for improvement. This study provides fundamental insights into the complexity of patient engagement in safety.


| INTRODUC TI ON
The potential for harm inherent in health care has the attention of stakeholders as never before. With this knowledge, there has been a proliferation of strategies and interventions designed to improve health-care safety. One of the strongest endorsements for the involvement of patients and families in the attempts to prevent healthcare harm has come from the World Health Organization. 1 Health-care safety strategies for patient involvement have been developed in Canada (eg Canadian Patient Safety Institute 2 ) and internationally. However, there is limited evaluation of the adherence to, and effectiveness of these strategies, with some authors noting the lack of patient perspective, or use of evidence, in their development. 3  ticipating in patient safety, and specifically at the bedside. [7][8][9][10][11][12][13][14] In a study of 2078 randomly selected discharged adult patients from 11 Midwest hospitals in the US, 91% agreed that patients could help prevent errors. 14 The finding from a systematic review of generally favourable attitudes among patients to participate in safety strategies 12 is supported by others, notably opinions from patients who cite the importance of partnership and shared responsibility. 13,15,16 These overall positive attitudes, however, are qualified by several factors. First, patients are less willing to participate in challenging health-care providers' behaviours, such as asking staff if they have washed their hands. Rather, patients' preference is for more traditional fact-gathering approaches that are perceived as less confrontational. 8,10,12,17 Similar results were reported in a study of 491 older adults who believed their role in safety was to passively follow instructions. 11 Perception of self-efficacy and belief in the effectiveness of a particular strategy appear to influence the likelihood of an individual's action. 9 Secondly, healthcare providers' encouragement appears to favourably influence patients' reported willingness to engage in certain safety-related behaviours 8,12,17,18 which mirrors patient participation in general. 19 Additionally, although credible evidence is lacking, it is not well understood whether the setting influences an individual's perception of the role they can or should play, varying, as example, from primary to tertiary settings. 11,17 Investigators have detailed patients' strategies to protect themselves, often undetected by health-care providers. 20 Taking a family member or friend to a health-care appointment was frequently reported across primary and ambulatory settings and included having them act as an advocate. [21][22][23] Protecting oneself was expressed by giving more information to the physician in primary care settings, 22 questioning the name of an unfamiliar medication or a change in its colour while in hospital 24 and considering their own sense of involvement and responsibility in home settings. 25 Mothers' sense of vigilance over their hospitalized children and the efforts taken to "… successfully safeguard" 26 them is poignantly described. 11,27 The vigilance undertaken by family members of patients of minority cultural and language backgrounds is noted. 28 Finally, reports of patients' involvement in ameliorating errors lend a strong argument for their safety involvement. 12,[29][30][31][32] Overall, there are gaps and inconsistencies in the literature, which include how safety is perceived by patients depending on the settings and across populations, the actual (vs anticipated) actions patients feel most comfortable in performing and the effect of these actions. If there is encouragement that patients have a role at the bedside in ensuring their safety, more substantial evidence is needed to determine the most appropriate and beneficial strategies for their involvement that is based on patient and family insights, not provider-driven.

| ME THODS
The overall objective for this study was to gain insight into patients' perspectives about their knowledge, comfort level and behaviours in promoting or helping their safety while receiving health care in

| Research design
The study was approached from the interpretative paradigm with an emphasis on describing and understanding. 33 The study design is descriptive exploratory and it is categorized as generic qualitative research, which is defined by Caelli et al 34 as a qualitative endeavour without being shaped by one of the known methodologies.

| Setting
The setting was a community hospital (52 beds) in Ontario, Canada.
At the time of the study, this hospital had 24 medical/surgical beds, four special care beds (level 2 ICU), 22 complex continuing care beds, two palliative care beds and outpatient ambulatory clinics.

| Participants
The participants were adult inpatients or outpatients receiving care at the study site. To be eligible, participants had to be (a) able to speak and read English; (b) 18 years of age or older; (c) able to provide consent; and (d) medically stable as determined by the health-care providers. Further, for the inpatient group, those who participated must have spent at least one night in hospital prior to being interviewed and were soon to be discharged. The family members were included in the interview as desired by the participant, and their comments were incorporated into the transcripts and analyses.

| Interview tools
The open-ended questions developed and used to garner information from participants were based on professional knowledge and common sense. The topics for some questions were informed by existing patient safety strategies 2,35 and the study site's patient information booklet, as well as common clinical processes (eg administration of medications; diagnostic testing; and staff hand washing).
The questions were written at a Flesch-Kincaid grade level 5 to reduce the need for clarification and as part of best practice to facilitate patient understanding. 36 The demographic questions included (a) age in years; (b) gender; (c) reason for admission; (d) length of hospitalization; (e) health status; (f) previous hospitalizations; and (g) previous personal experience with adverse events in health care.
All the patient information was collected from the participants only.

| Procedure
The associated university research ethics board and the study site granted ethics approval. In the inpatient units, the nurses helped identify any eligible patients. Once patients were identified, staff approached them with a recruitment brochure to inquire if they would be interested in meeting the researcher (LD). The interviews were audio-recorded.

| Data management and analysis
All the data were treated as confidential, and the master participant list was kept separate from the raw data. The audio-recordings of each interview were transcribed verbatim. Code words were created for all proper nouns and kept in a separate code sheet.
Inductive content analysis was employed for analysing the patients' narratives to identify prominent themes and patterns. 37 This process involved a first and second cycle coding process, wherein transcripts were coded in the first phase, and the codes were categorized into larger groupings/themes in the second phase. The family members who joined the interviews were also given a "family" code name linked to the related participant, and their statements were analysed based on the content and coded accordingly. This permitted analyses of all content as appropriate, as well as tracking of whether data were provided by a participant or family member.

| Trustworthiness
To ensure the integrity of this research, a Model of Trustworthiness was used and considered truth value (credibility), applicability (transferability), consistency (dependability) and neutrality (confirmability). 38,39 The techniques used to ensure credibility included considerable time with each participant, as well as with a number of participants, which spanned over many months. Participants were asked their opinions about new ideas mentioned by previous participants to ensure concepts were explored in-depth as needed. Related to transferability, the participant and setting details, as well as the rich, descriptive data from the study findings are valuable information for making informed comparisons to other contexts. Dependability was assured by accuracy of transcripts and auditable data analyses. Additionally, interviewing continued until it was determined that there were no new general themes. Regarding confirmability, an audit was not conducted, however, records (eg raw data; process notes) were maintained for every phase of the study. The lead author (LD) who conducted the interviews reflected on biases and perspectives through journaling, as well as continually discussing any concerns or reflections with her co-investigator.

| FINDING S
Fourteen women and 16 men (and four of their family members) were in this study, who ranged in age from 40 to 93 years old (average age 71 years old). Eleven individuals described a health-care error(s) (personally or via a family member). All of the participants had had previous interaction with the health-care system for different needs, and the reasons for their current admissions were varied, including but not limited to suffering a stroke; receiving care post-surgery that was per-

| Physical and emotional health
The participants talked about the severity of their illness/injury and of resulting limitations, as well as its evolution and influence on engagement. The participants who agreed with the premise of patient involvement in patient safety qualified it by saying that illness might preclude them from being engaged. Cindy, who was asked whether patients should be responsible for protecting their safety, said, to a certain point but I think that the hospital should be the ones that really look out for your best interests and protect you. She further reasoned: When the person is sick they should be taken care of and kept safe and protected…because you've got enough worries yourself when you're sick, you're under enough strain and pressure worrying about what they're going to do and how things are going to turn out.

| Comprehension
The participants identified that individuals will differ in their capacity to understand and to remember. This type of capacity can influence if and how engagement can occur. Mildred, admitted for fluid retention, was not certain of the cause, replying, I couldn't tell you because it's too many big words. Conversely, Henry, having had numerous hospitalizations, stopped the interview when he heard an alarm sounding that he could not discern, to check his oxygen saturation level. When asked if she thought patients should participate to ensure safety, Maria answered, to a certain extent, but qualified, I wonder how some people understand it.

| Awareness
Observation and awareness of hospital processes differed between individuals. In discussing staff handwashing, Arthur admitted he did not know if they had, saying, Maybe they are, I'm just not noticing or paying attention. Arthur's mother added, I've seen them using that [hand sanitizer]. In another example, Arthur's mother mentioned the hospital's gown designed with a "wash your hands" reminder. He had not paid attention to it, while his mother had, saying, I thought that was a great idea-I notice things like that.

| Emotional effect
In describing their experiences (eg typically related to an error), participants revealed varying emotions and talked about feeling anger, worry or having compassion. Most often experiences of health-care error were in the past; however, the emotional intensity was still evident. Mildred vividly recalled her anger regarding a lapse in care. My daughter went for a mammogram and they never sent her report to her doctor. Additionally, the participants gained confidence and comfort in attaining certain experiences, while unknown situations induced trepidation.

| Seeing patterns
For some participants, their way of understanding the health-care environment and what might be expected of them involved looking for routines or patterns and that was afforded by time spent in other clinical settings and or the current one. By understanding the patterns or processes, this allowed for a certain control and ability to act in a seemingly vulnerable and dependent position. Sue, having had a longer hospitalization, had come to experience a certain routine and when that changed one day, she tried to make sense of it. She said, I notice things. Normally they take your vitals around twelve o'clock at night -they didn't last night. This morning I was up early because I heard [name] walking in the hall, and sat down and I kept thinking they usually take my vitals before they bring my meal and they didn't today.
Aidan had had a number of prior hospitalizations and, like many, had brought his medication list to the hospital. He explained his rationale saying, usually when I've been over before they ask me… so I always carry the medication list in my wallet.

| Worldviews
The participants disclosed different beliefs and life philosophies, detailing how these were realized in their behaviours and interactions.

| What I do for me
Participants described personal strategies they used for their hospitalization, and how they coped with perceived deficits by, as example, implementing tactics from home. These safety strategies were independent of provider requests and included requesting raised bedrails at night; using a walker or cane; and consistency in wearing slippers or shoes.

| Choices and judgements
The participants made choices and judgements while in hospital. As

| Professional providers
The participants commented on interactions with health-care professionals, including their expectations of providers and their efforts to facilitate that relationship (eg such as through the use of humour).

| Values and priorities
The participants had distinct viewpoints of safe care and what "feeling safe" meant. There were times when participants struggled to find the words, likening it more to an elusive "feeling" and something that they knew they received but could not articulate. Mobility and fall prevention, the environment, and insightful, attentive staff, figured prominently in their responses. While practical considerations were provided, more conceptual ideas of safe care were also described, as when Dan talked about it being fair and honest.

| D ISCUSS I ON
Given the complex intricacies of patient engagement in patient safety, it is not a straightforward issue; we cannot simply say patients should or should not be engaged as partners in their safety. The participants based decisions on advice from family members and relied on them to, as example, bring medications or help decipher health-care information. For many, it seemed a purposeful strategy.
In this way, the family member could act as a second safety check.
The results of other studies support this finding, such as the research by Rainey et al 47 of seven family members (and 13 patients) and their vigilance. Additionally, parents with a sick child described actions they take to safeguard the child, including advocating and constant surveillance. 46 Collectively, this evidence suggests that patients, as well as family members, are engaged in safety in their own ways.
An unusual finding of this study was that, despite individuals believing patients need to be engaged in safety, most expressed comfort with their current knowledge and understanding of safety.
Further, although some admitted they probably did not know enough, they were satisfied with what that they knew. It may be that participants had difficulty articulating what information they needed, similar to participants in the study by Martin et al. 42 Safety is principally seen as the responsibility of providers.
Martin et al 42 reported that, of the 25 patients they interviewed, safety was regarded as the purview of the provider, while the participants in Walters' study, said that it [safety] should not be a patient's obligation. 48 The participants in this study identified limitations to having an equal partnership, including knowledge, degree of physical and emotional wellness (as others have reported 42,48 ), or a fundamental belief that it simply is the professional's obligation. One can also make a general inference that there are safety elements that patients see as the sole responsibility of the health-care professional by considering results from investigators who have examined specific clinical issues, such as patients' [negative] attitude towards asking providers about handwashing. 49 If patient engagement in safety is to be standardized, engagement limitations will need to be addressed (as possible), and a shift in thinking about the patient role will be required of some patients.
Further, and as seen in other studies as well as this study, is the trustfulness and sensitivity patients have of their provider relationship, which must also be balanced. 18,50 Involving patients in research who wish to be, specifically in patient-identified engagement safety strategies, is needed. We have not purposely designed assessment strategies to identify patient-identified tactics or how they can be enhanced and encouraged, as feasible and appropriate. Improved information and communication about safety processes, and the rationale as to why certain actions are needed, as opposed to telling patients to do something, might engage them in a different, more effective way. In sum, and most importantly, discerning patient preferences as to how they see their engagement must be the goal of future work.

| Study strengths and limitations
This study has several strengths. First, it is believed to be one of the first Canadian studies occurring in a community hospital that was designed using an interpretative approach to explore patient and family member perspectives and behaviours about their active participation in health-care harm prevention across the spectrum of care. Other Canadian investigators have concentrated on specific processes (eg medication process 51 ) or employed focus group methods for examining patient perceptions of safety, the influence of providers on patient involvement and strategies for improving engagement. 18  Mobility & fall prevention… • Providing things when you need to move about safely -like giving you a walker if you need to walk somewhere or wheelchair and they make sure it fits my body comfortably so I can get around better. • They take me to the bathroom if I need it and stand by so I don't get up and fall. • They make sure you're sitting down safely before they leave the room and…or in bed or whatever. • I do feel safe here. I guess because I can get around.
• To make sure, if they're so sick they don't know what they're doing, for themselves, that they're not going to be able to fall or fall out of bed or if they are trying to get out of bed then, that's when they're going to get out of bed anyway because you can't be everywhere at once. If you can't keep them in the bed at all then you take all precautions that that one's not making the decision on their own to get out of bed. And also if they needed to be strapped in then they are, it's for their protection and the staff protection to do it. • I think when you're unsteady on your feet you kind of need that extra little hand to help you. Everyone follows safety standard… • The hospital treating you was ensuring your safety by having the best trained or qualified people to look after you, to ensure that they wash their hands, to ensure that they're kept up on the latest methods, to ensure that other hospital staff such as, cleaners, food, volunteers, all maintain that safety standard too and that cleanliness factor of cleaning their hands before they come in. • [Unsafe] The non-caring nurses that administered it [treatment at another site], that didn't follow protocol, I'd call that unsafe care. Very scary.

Environment…
• That if they're mopping the floor they put the signs out and they warn you. Or if they're making your bed, they make sure they haven't got it up too high that you can't get into it. That they have the furniture arranged so that you're not going to fall over it. Stuff is placed so you can get at it. • I'm in a safe and clean environment which means a lot to me.  Medication administration… • Your medications should be looked at but I don't know maybe they do look, the nurse who brings it to you. • Getting the right drugs, the nurse checking that the drugs are the ones you're supposed to get, washing her hands before she gives them to you.
Insightful, reliable & attentive staff… • Being there when you need them.
• I feel that they should be here, like if you ring the buzzer and you're in a lot of pain and you know that you're afraid to get up to do things on your own, that's my only concern, that they would come and do it, for you, help you. • Be prompt, and that if you need them, to get here as soon as possible.
• I don't think you should leave the patient alone so much. I know they've cut back but. But these horror stories about retirement homes and… terrible. Just awful and they're right here in our own community. • They assessed each person whether they were nervous or they were apprehensive or they were relaxed. • I think they should look in on you more often than they do. They do have a bell if you need it but you have to remember that there's a bell there or you have to be awake enough to know "yes" you've got to press the bell. Everyone's role… • Everyone, everyone being aware.

Multifaceted…
• I think there would be maybe two or three different scenarios that should come into play. Make sure that the room is not cluttered, and stuff like that. The medication should be, definitely looked at properly. And also whether that patient is demanding because they are hurting in pain so much that they're becoming an annoying, so therefore it works on one's nerves, so you have to keep in mind this is not that person's right make-up. There's safety for all, not only for the patient but for the nurse, the doctor, the staff person. As a necessary initial step and in keeping with the study questions, the findings of this study have been presented as a 5-Facet Framework to illuminate and describe important aspects for patient engagement in safety as expressed by patients. There was no attempt to formally characterize or delineate the specific relationships between facets, other than to generally acknowledge they were uniquely integrated for each person. While this may be a potential limitation, the utility lies in the fact that this is a building block for future work, specifically how this framework can shape the development of an assessment/evaluation tool about patient engagement in safety to be used in clinical settings.

| CON CLUS ION
While advocates have promoted that, "If the focus on patient safety doesn't begin with, and include the patient a valuable piece of the health-care process is lost," 16  The participants of this study are sincerely thanked for so willingly and honestly sharing their personal accounts.

CO N FLI C T O F I NTE R E S T
None of the authors have any conflict of interest to declare.