International Journal of Health Care Quality Assurance Patient safety culture: finding meaning in patient experiences Andrea C. Bishop Brianna R. Cregan
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To cite this document: Andrea C. Bishop Brianna R. Cregan , (2015),"Patient safety culture: finding meaning in patient experiences", International Journal of Health Care Quality Assurance, Vol. 28 Iss 6 pp. 595 - 610 Permanent link to this document: http://dx.doi.org/10.1108/IJHCQA-03-2014-0029 Downloaded on: 30 January 2016, At: 19:40 (PT) References: this document contains references to 30 other documents. To copy this document: [email protected] The fulltext of this document has been downloaded 273 times since 2015*
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Patient safety culture: finding meaning in patient experiences
Patient safety culture
Andrea C. Bishop School of Nursing, Dalhousie University, Halifax, Canada, and
Brianna R. Cregan Department of Psychology, Saint Mary’s University, Halifax, Canada
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Abstract Purpose – The purpose of this paper is to determine what patient and family stories can tell us about patient safety culture within health care organizations and how patients experience patient safety culture. Design/methodology/approach – A total of 11 patient and family stories of adverse event experiences were examined in September 2013 using publicly available videos on the Canadian Patient Safety Insitute web site. Videos were transcribed verbatim and collated as one complete data set. Thematic analysis was used to perform qualitative inquiry. All qualitative analysis was done using NVivo 10 software. Findings – A total of three themes were identified: first, Being Passed Around; second, Not Having the Conversation; and third, the Person Behind the Patient. Results from this research also suggest that while health care organizations and providers might expect patients to play a larger role in managing their health, there may be underlying reasons as to why patients are not doing so. Practical implications – The findings indicate that patient experiences and narratives are useful sources of information to better understand organizational safety culture and patient experiences of safety while hospitalized. Greater inclusion and analysis of patient safety narratives is important in understanding the needs of patients and how patient safety culture interventions can be improved to ensure translation of patient safety strategies at the frontlines of care. Originality/value – Greater acknowledgement of the patient and family experience provides organizations with an integral perspective to assist in defining and addressing deficiencies within their patient safety culture and to identify opportunities for improvement. Keywords Inclusion, Patient perception, Patient safety, Organizational culture, Patient stories, Patient experiences Paper type Research paper
Introduction With the knowledge that patients are exposed to harm after experiencing adverse events while hospitalized (Baker et al., 2004), improving patient safety practices and patient safety culture has been at the forefront of a number of domestic and international campaigns. Patient safety has been defined as “the reduction and mitigation of unsafe acts within the health care system, as well as through the use of best practices shown to lead to optimal patient outcomes” (Davies et al., 2003). In Canada alone, research estimates that out of 2.5 million hospital admissions per year, 185,000 admissions are associated with an adverse event. Out of the 185,000, it is estimated that 70,000 of these events are preventable (Baker et al., 2004). Given this, the Canadian Patient Safety Institute (CPSI) was formed in 2003 with the intention of improving patient safety and overall quality of health care in Canada. CPSI serves as a national leader on developing evidence-informed patient safety products and improving the sharing of and learning The authors would like to thank Dr Mark Fleming for his guidance throughout the research. Conflicts of interests: the authors declare no conflicts of interest.
595 Received 12 March 2014 Revised 30 May 2014 15 December 2014 31 March 2015 13 April 2015 Accepted 21 April 2015
International Journal of Health Care Quality Assurance Vol. 28 No. 6, 2015 pp. 595-610 © Emerald Group Publishing Limited 0952-6862 DOI 10.1108/IJHCQA-03-2014-0029
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from patient safety incidents and interventions (Canadian Patient Safety Institute, 2012). CPSI also promotes collaborative care in which the patient becomes part of a patient safety team. This allows the individual to play an integral role in the setting of patient safety strategies and helps ensure that the patient voice is captured. In an effort to capture the patient and family perspective, patients and family members who have been affected by an adverse event are interviewed as part of Canadian Patient Safety Week to provide a first-hand exploration of issues central to patient care and safety. These videos have been used to educate health care providers and administrators about the types of events that can occur during the process of providing hospital care and also the struggles that many patients and their families have in trying to be heard when problems occur. As such, patient experiences can be used as a unique resource in understanding what patient safety looks like at the frontlines of health care and to identify patient safety culture improvements. Patient safety culture Safety culture is defined as “the product of individual and group values, attitudes, perceptions, competencies, and patterns of behavior that determine the commitment to, and the style and proficiency of, an organization’s health and safety management” (Health and Safety Commission Advisory Committee on the Safety of Nuclear Installations, 1993). As such, patient safety culture refers to the norms, attitudes, and behaviors within an organization that serve to uphold patient safety. A positive patient safety culture refers to a number of characteristics within an organization that allows patient safety to be a priority in the health care organization, including open communication, a no blame approach to incident reporting, committed leadership, ongoing organizational learning, and the proactive identification of safety threats (Claridge and Sanders, 2007). Many patient safety culture tools currently rely on surveying and seeking feedback from health care providers and staff on dimensions of safety culture (Flin et al., 2006). However, patient and families are important stakeholders to a health care organization’s patient safety culture, and have traditionally been underutilized as an important source of information. Recognition of patient-centeredness as a subculture helps to ensure that patient involvement, experiences, and stories are all captured within patient safety culture measurement (Sammer et al., 2010). A critical component of patient-centeredness is the concept that patients should be active members of their own health care. Therefore, delving into the patient experience allows for a greater understanding of specific factors that contribute to patient feelings of empowerment and engagement in care. Patient experience Patients are in a unique position to provide information on not only the care they receive, but also on the many interactions between health care providers and patients that they witness while hospitalized. In this way, patient experiences can contribute a distinct perspective to patient safety culture, which in turn may help organizations design safer systems (Sammer et al., 2010; Morath and Leary, 2004). Further, patient experience is positively associated with both safety and health outcomes in a variety of health care settings (Doyle et al., 2013) and it has been argued that patient experience is strongly influenced by the patient-provider encounter (Manary et al., 2013). The importance of trust, effective communication, empathy, and a sense of “relationship” with their health care provider have all been identified as important factors contributing to the patient experience (Gilburt et al., 2008; Jackson et al., 2001; McCabe, 2004; Peters et al., 2009).
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Patients can experience patient safety culture through all aspects of the health care encounter, including how they are involved in treatment options, the communication styles of staff members, the coordination of their care and how they are treated. Additionally, previous work has indicated that patients may perceive patient safety as feeling in control of their care and connected with their health care providers (Bishop and Macdonald, 2014). Therefore, these are important aspects of the patient experience to understand when assessing patient safety culture. In instances when adverse events occur, the patient and family experience of the event can help organizations to identify areas of weaknesses in their culture and opportunities for future failures to occur. While there has been a large emphasis on disclosure of harm to patients and family members when it occurs (Gallagher et al., 2007), there is less knowledge about how patient and family stories of the events can help organizations to recover and improve. Many organizations currently collect patient and family experience data and stories for clinical and administrative education purposes. This exploratory study aims to utilize available video interviews in order to explore patient and family experiences of patient safety culture and the impact of adverse events. Given the importance of incorporating patient experience when assessing safety culture, the objective of this research was to determine how patient and family stories can inform our understanding of patient safety culture and how patient safety culture impacts the patient experience. Methods A total of 11 patient and family stories concerning adverse events were examined in September 2013 using video recorded interviews that are publically available on the CPSI web site (www.patientsafetyinstitute.ca/English/news/cpsw/Pages/ PatientStories.aspx). All videos were recorded in 2012 for use during Canada’s Forum on Patient Safety and Quality. As part of the forum, patient and family videos are shown to provide a unique patient perspective and highlight areas for improvement, ultimately allowing administrators and practitioners to reflect on their own practices. Patient and family stories are selected on the basis of two criteria: first, the person’s readiness to tell their story while being video-taped; and second, the connection of the story to the theme of the forum. Additionally, CPSI strives to ensure variation in the experiences presented. Video participants undergo a semi-structured interview performed by a third party individual aimed at eliciting their experiences and probing for additional detail when necessary. The length of the videos range between ten and 11 minutes and are edited by CPSI for length and presentation before being placed on the web site. Each interview was transcribed verbatim by a member of the research team (B.C.) and was then collated as one complete data set. Thematic analysis was used to perform qualitative inquiry of the subsequent data set by identifying existing themes. A theme is a “pattern found in the information that at a minimum describes and organizes the possible observations and at a maximum interprets aspects of the phenomenon” (Boyatzis, 1998, p. vii). Thematic analysis was conducted using the six steps outlined by Braun and Clarke (2006), including: immersion/familiarization; generating initial codes; searching for themes; reviewing themes; defining and naming themes; and producing the report. However, one of the strengths of thematic analysis as a qualitative method is that it is independent of theory (Braun and Clarke, 2006), and as such, provides greater flexibility during analysis. For this research, analysis was inductive in nature, meaning
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that no theoretical framework was applied to coding; rather, codes were identified from the data itself. Furthermore, the analysis was semantic in nature, meaning that themes are identified based on participant statements without further interpreting underlying meanings. Once the transcribed data set was complete, an initial read through of all narratives was conducted to ensure familiarization with the data and to produce initial notes and thoughts about the data. Both researchers participated in the initial coding, with the intention of identifying as many codes as possible and each data extract being coded inclusively. The initial codes and extracts were then categorized into potential themes. The entire data set was then reread to review that the potential themes captured all data extracts and fit all data sources. Once the themes were named and defined, both researchers reviewed the coding framework and themes against the data set and coded individually to obtain inter-rater reliability. The two researchers then met with one another to discuss the findings and to review the final themes. The criteria suggested by Lincoln and Guba (1985) to ensure trustworthiness of qualitative inquiry were used as guidelines during the research in order to ensure credibility of the findings. All qualitative analysis was done using NVivo 10 research software. As this study involved secondary analysis of publically available data, ethical approval was not required. Findings After performing thematic analysis on the data set, a total of three themes were identified: first, Being Passed Around; second, Not Having the Conversation; and third, the Person Behind the Patient. Each theme is explored in detail below. Information regarding participant demographics and stories can be found in the Appendix. Being Passed Around This theme encapsulates instances when patients and family members felt that there was a gap in the continuity of care. As a multitude of health care providers can be involved in someone’s care plan, patient care was seemingly fragmented at times. Providers were not always able to provide a diagnosis based on history, but rather on present conditions alone. A common shared element of Being Passed Around was the lack of knowledge being shared among health care team: […] we wanted to get doctors, nurses, clinicians to speak to each other. Better. To listen to each other and an important part of that better communication is the listening element. So that clinicians listen to patients and speak to them in a way that they can understand. It’s changing the cycle from “I’m the doctor I’m the nurse, you’re the patient to this is a healthcare team and you’re part of the team” (B.W.).
Another description of this theme that was frequently elicited was the feeling of responsibility being dispersed too thinly between providers, “had there been more of a team work going on some follow-up, some follow-through some action plans, that it would have been caught” (T.S.), and a need for more follow-up after an adverse event has occurred “they classify her death as natural and close the file. For our family that wasn’t enough. We said we really have to know more, we want to know what’s gone on” (M.M.). Many family members and patients felt like they were being handed off among different providers, and consequently felt as though it was hard to engage as member
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of the health care team. One family member shared her thoughts after caring for her mother-in-law:
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It’s very important to involve the family. Families have to understand that they may have to ask to give input. I would hope that the medical system will start asking for input more from families and caregivers, but if they’re not then, as a family, do it respectfully, but give your input on your frail elder let them know how they usually are. Tell them if there’s something happening you don’t understand trying and get an answer (J.T.).
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Those who had been through similar experiences of being passed around noted that they wanted to “see specialists and doctors playing closer to each other” (T.S.). Other participants reflected the theme of Being Passed Around in a different sense. In connection to a lack of shared knowledge, a feeling of uncertainty as to who was ultimately responsible for a patient’s care was also frequently found. One participant shared her concerns with a cardiologist who would not take responsibility for her father’s care, “I said ‘I’m just concerned that my dad has not been put on Warfarin,’ ‘Oh,’ he said ‘you don’t have to worry about that, he’s got a window of a couple of months,’ meaning he could be in atrial fibrillation for a couple of months before we have to worry. The cardiologist said, ‘well your dad’s going to go home in a couple of weeks to Canada, so just have him see a cardiologist there’ ” ( J.B.). Within the complexity of receiving health care, patients and family members are often unaware of the ongoing provider-provider communication, as handoffs rarely occur at the bedside. For one family member, assuming that a handoff between surgeons had occurred led to irreversible harm: And the neurosurgeon and I, and the nurse had a conference um, he told me his, Vance’s condition was very grave and I felt so bad for the neurosurgeon because he had come into this unknown. The first doctor that had seen Vance had gone away for the weekend and we assumed erroneously that a handover had been done, that this doctor would be taking over Vance’s care, but he didn’t even know Vance was there. There was no handover. So this poor doctors coming in blindly (D.D.).
For another family member, ongoing communication between providers regarding treatment decisions was assumed; however, it was later found out that the provider had no responsibility to heed recommendations made by others: The report that said Martha shouldn’t be giving lithium was written by a psychiatrist because they’re the ones that treat bipolar disorder. But the next psychiatrist that took over when this um, psychiatrist left the practice decided that he didn’t think the risk with that great. And he didn’t discuss the risk with Martha, he just um, told her that she should try lithium and that it often had a positive effect on people. So there’s no obligation on one doctor’s part to follow the recommendations of another doctor (M.M.).
Not Having the Conversation Not Having the Conversation stems from instances where patients and family members and providers were hesitant to speak up or felt defeated when they did. In many instances, not having the conversation led to the inability to prevent further deterioration in a patient’s condition or to prevent an adverse event from occurring. For patients and family members, not having the conversation involved identifying that something was wrong with the situation, but either not following their intuition or not knowing how to say what they needed to communicate. At times a patient or
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a family member felt as if they were silenced when they did try to bring something to their health care provider’s attention. Many stories highlighted instances when patients and family members had an intuitive feeling that something wrong, but for one reason or another chose not to speak up about it. Patients and family members characterized this feeling of not being comfortable, or a feeling that something worse was going on “initially we thought Claire’s care in the ICU we, was as it should be, um, but after the dust settled, we came to realize or I came to realize something didn’t sit right” (R.M.). For one family, it was an innate feeling that something was really wrong with their family member’s health, but they felt they could not say anything because they were not medical professionals: So we asked the nurse, and the nurse told us your mother, mother-in-law, is over 80 years old, she has low blood pressure, this is quite normal. This happens all the time. We didn’t really feel comfortable that that was the answer, it had never happened before, but again, we are not medical professionals and we accepted the word of the doctor and the nurse (B.W.).
This sentiment was echoed by another family member, “we were really worried about her because she wasn’t, she really wasn’t well and we weren’t sure, sort of, what was going to be happening but the care she got was excellent so we were, we were going on the premise that she would be that she would be fine” (A.F.). In many cases, there was a feeling among patients and family members that even when they did try to speak up their concerns were dismissed, sometimes even multiple times. Patients and family members also spoke of their perceptions of health care providers during the communication process, identifying their perceptions that health care providers did not find it necessary to tell them everything or dismissing concerns when they were raised. In one instance, a family member tried repeatedly to voice her concerns about the deterioration of her daughter’s condition: I was just, you know, upset that they weren’t really listening to me, they, they didn’t do any more extra monitoring, they did call the, the resident in and she basically doesn’t want to do anything. She says, “You know what she’s got, gastro. You know we realized that she has this ITP, we’re not going to do anything more than what’s ordered,” which was the prednisone and “no we will not start a line, she does not need it,” I said, “I think we need to do, you know, something more,” I was pushing for it and she was just like “Well you can, you can, you can discuss that with that with the with the specialist in the morning” and I was just like, “I think, I think that’s going to be too late.” And then she just promptly left. Whatever I said just was not sinking in, was not, you know, seemed to be computing with anyone (S.R.).
Another family member who had repeatedly brought concerns to the care team only to have them dismissed, echoed this feeling of not being heard. Once again, although concerns regarding their family member’s condition were voiced, they were repeatedly ignored: “For three days I’ve been trying to tell them that Vance’s condition is getting worse.” And he turned to the nurse and said, “What is she talking about?” And the nurse just shrugged her shoulders. And it was the same nurse who had told Vance he wasn’t going to die. She happened to be on that day or that evening. And she just shrugged her shoulders and said “Well, she’s had some concerns over the last few days” (D.D.).
Furthermore, when concerns were brought up the health care provider was reluctant to acknowledge the impact. For some patients/family members there was a sense of not
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owning up when an adverse event occurred and subverting the truth. One family member spoke of the harm that can occur when an adverse event occurs and it is covered up “it is important for organizations to recognize that they can inflict a second type of harm onto patients and families when they don’t step up and acknowledge the responsibility and the accountability that they’ve had in an adverse event” (S.R.). In this instance, the conversation about what went wrong did not take place and left the family feeling frustrated and in need of more answers. Even when they felt it might not be right, many patients and families reported accepting what their health professional said at face value, which prevented them from voicing concerns. Patients/family members spoke of implicitly trusting their health care provider, with family member remarking “but I hung the phone up and I thought, ‘well he’s a cardiologist, he should know’” (J.B.D.). Although this family member was a nurse by training, it was assumed that the specialist would know the correct procedure. The Person Behind the Patient The theme of the Person Behind the Patient was described as feeling like a number, or the idea that sometimes the actual person behind the illness is omitted from care. One family member described it as “you lose your power, you can be the biggest corporate magnet, but when you go in, you’re just another body” (B.W.). Many participants echoed this sense of losing their identity in the process of becoming a patient and being treated as an extension of one’s illness, without knowledge of their background. One family member shared, “the big problem for us looking back is that these psychiatrists they do not know the people they’re talking to. All they see is the state they’re in right now and with Fervid that was delirious, hallucinating and so on. He didn’t know her baseline, which we, as the family, know” (J.T.). The need to better understand the patient’s baseline and normal behavior was discussed by a number of patients and family members as a precaution against health care providers assuming that a patient’s current state is normal: And I mentioned my concerns to the staff many, many times over the course of the next three days. I mentioned his, his abusive, aggressive behavior, which was not like him, and I know it’s expected in head injuries you quite often see that. But it just wasn’t Vance. And when I mentioned that to one of the nurses she said, “Well he’s a rig worker, we expect that.” And I said, “But, regardless, that’s not our son there’s something else going on here something’s changing getting worse” (D.D.).
Seeing the Person Behind the Patient also spoke to the need to be cared for and to be treated compassionately. One patient described a particularly illustrative experience: After about twenty minutes, I was triaged and I was told because I was two weeks shy of the hospital policy for when they consider your baby human that I would be kept in Emerg to deliver and from there that they got me a room but we ran into major issues because my doctor never ended up showing up […] And then for seven hours I was left completely by myself with my husband where we were told to really just clean up our own blood and our mess and for me to try not to bleed on the floor and a soiled laundry hamper was brought to us with stacks of towels (T.M.).
This participant was upset after being left for hours on her own during a traumatic event. As another interview participant put it, “This idea of patient centered care it can’t just be a phrase, it can’t just be a marketing idea, it has to be real […] we need to
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practice compassionately” (J.B.D.). Being able to practice compassionately incorporates an awareness or understanding around each patient’s needs, which is tied into many other things other than illness itself. Another family caregiver echoed a similar sentiment in relation to practicing compassionately and seeing the person behind the illness: I want the healthcare system to be more humane more empathetic, kinder. We’re all human beings; we all deserve to have the best possible death. And we know now a lot more about how to make that happen, it’s not easy because it’s very time consuming and it’s very hard on the heart but ultimately it’s so rewarding to see that you can make a difference in someone’s life at a crucial time in their passage (C.K.).
Finally, in some cases patients and families reported instances of being labeled “difficult” or making assumptions. One family member recounted how her sick father had been made to walk even though he wasn’t feeling well “I mean, you’ve been vomiting for five weeks, you don’t even have the strength to stand, but they wanted him to move, but then they started to label him as not wanting to walk as though he just was being stubborn” (J.B.D.). Discussion This exploratory study provides a unique approach to analyzing patient and family data as it relates to patient safety culture. The themes identified in this study speak to the experiences of patients and families as they try to navigate the health care system while encountering a number of gaps in the continuity of care. Further, it identifies the need to improve provider-patient communication and to meaningfully engage the patient and their family members as integral members of the health care team. The patient and family experiences captured in this study also speak to the breadth and depth of data that can be captured when patient and family experiences of adverse events are elicited. With regards to the findings of this study, previous research suggests that the theme of Not Having the Conversation is a prevalent feeling among patients who have experienced an adverse event. In this study, many patients and family members found it difficult to speak up for themselves, and when they did they sometimes found themselves being silenced. McCabe (2004) found a similar theme titled Lack of Communication when interviewing patients about their experience with health care providers during their hospital stay. In that study, patients reported feeling misunderstood and not heard as some nurses made assumptions about their concerns or needs. Furthermore, patients felt as though some nurses were generally unaware of their emotional disposition and were inattentive to their feelings. Similar descriptions were found in patient and family narratives of their interactions with health care providers in this study. Interestingly, although a few of the family members included in this study were health care providers themselves, there still was a reluctance on their part to speak up when they had concerns or to challenge other health care providers. Patak et al. (2010) state that patients have a right to be listened to by their providers and that in order for communication to be effective, information must be complete, accurate, timely, unambiguous, and understood by the patient. However, previous research has identified a number of characteristics associated with the patient, provider, and clinical encounter that can influence the likelihood of patient involvement in their care (Davis et al., 2007). Patient and family experiences in this study speak to the challenge for
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patients when trying to communicate with providers. This is an important aspect of patient safety culture to consider when encouraging patients and families to be more involved in their care. The role of trust within the patient-provider relationship is a common topic among other safety research. In this study, patients and families reported placing trust in their health care provider to provide the right treatment, with this sometimes leading to a reluctance to ask questions or to listen to “gut feelings.” Gilburt et al. (2008) found that trust is one of the most commonly related variables to patient experience in a hospital setting. Results showed a reported emphasis on mistrust of health care providers when staff did not meet patients’ expectation of professionalism. Patient satisfaction with their care has also been shown to mediate patient perceptions of health care quality and patient trust (Alrubaiee and Alkaa’ida, 2011), suggesting that patient trust may be mediated by a number of factors related to care received in hospital and expectations of what that care should look like. Patient and family expectations in this study highlighted a belief that the health care system is safe; however, once an adverse event has occurred, many patients and family members became more aware of potential patient safety issues and identified the need to be more vigilant when receiving care. Health care provider expectations were also discussed by patients and family members. Narratives in this study highlighted several incidents where assumptions were made about patients or their family members, whether it is about their baseline health or that they were being “difficult.” The phenomenon of the “difficult” patient arises when health care providers identify certain characteristics of a patient and relate it to a specific attribution, such as not cooperating with health care providers and/or not wanting to do anything to improve their condition (Koekkoek et al., 2011). When this labeling occurred, patients and family members spoke of the “blindness” of many health care providers to seeing the true severity of the patient’s condition as well as a reluctance to further speak up so as to not make matters worse. Communication failures between health care providers were also commonly spoken to by patients and family members, with many of them assuming that their health care providers were communicating their important heath information. However, in many instances this was not the case. According to Leonard et al. (2004), communication failures are one of the main causes of patient adverse events. It is suggested that instead of structuring safety and quality around the performance of the individual practitioner, teamwork among health care providers, patients and family members would be a more effective delivery method. The theme of Being Passed Around highlights the expectation that care providers consistently follow standard communication and handoff procedures, when this may not always be the case. Research has identified a number of barriers to handoff procedures in the hospital setting, including the physical setting where the handoff takes place, the medium of communication, time and convenience issues, and discrepancies in handoff education (Solet et al., 2005). Research also shows that handoffs and gaps in continuity of care can result in significant adverse events and suboptimal patient care (Arora et al., 2009); however, while the use of standardized procedures and protocols is touted to reduce confusion and ambiguity between health care providers, there is little evidence of their impact on patient safety (Patterson and Wears, 2010). Finally, patients and family members spoke to the need to see more than just a patient with a disease, but rather to engage them as partners in their care and to understand their unique needs. A large concern voiced by patients and their family
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members was the lack of involvement they had in decisions about their treatment. Clarke et al. (2003) found a similar theme of “seeing the Person Behind the Patient” through a biographical approach to understanding the patient experience. Better understanding of the patient’s lifestyle, as well as baseline characteristics, was reported by patients and family members as being integral to ensuring that the right care is being provided and to gauge the severity of illness presentations. Giving individuals a chance to express themselves also engages them in their own health care treatment (Ekman et al., 2011). Family members and friends may also feel more strongly supported by health care providers when they took an individual interest in the person (Clarke et al., 2003). To establish a trusting relationship with their patient, health care providers should create an inviting environment for the patient to ask questions, show genuine attention and interest in the patient aside from their illness, and be respectful of the patient as an equal partner (Thórarinsdóttir and Kristjánsson, 2014). Limitations This research was primarily limited by the utilization of CPSI video interviews as a basis for the thematic analysis. Although the CPSI patient and family stories contribute valuable information about patient safety culture, the videos present a revised and edited perspective. With this in mind, the edited videos could carry certain biases, whereas unedited videos may have provided a more objective look at each individual’s story. Nonetheless, they still provide valuable insight for patient safety culture from individuals who personally experienced an adverse event in a hospital setting. In relation to the utilization of CPSI videos, another limitation found within this research was the inability to ask follow-up questions with the interviewees. In a few cases, researchers were left with questions about the outcome of an adverse event. As the interviewees were not available for comment, researchers could only work with the given information. Follow-up questions could have been used to better probe some of the interviewees in order to explain situations further or to have a better understanding of the players involved. Furthermore, patient and family experiences and narratives could not be triangulated with other first-hand accounts of the health care providers involved or with primary documentation of the event. Nonetheless, the researchers felt that the full timelines of these stories were presented and therefore offered good insight into the issues. We acknowledge that this paper focusses mainly on a deficit perspective of patient safety culture after an adverse event has occurred. Given that the data analyzed was edited to provide accounts of adverse events experienced by patients and family members, there is a lack of data regarding positive experiences of patient safety culture that can be used to provide guidance in this area. However, as this research intends to focus on the improvement of patient safety culture, the nature of the research is to create awareness around pre-existing gaps within the system. There are some potential limitations with regard to data saturation. Data saturation is important in qualitative inquiry in that it assures the researchers that all experiences have been captured and uncovered. Given that there were a set number of interviews to analyze in this data set it is possible that further experiences could have been elicited by expanding the sample size. While this is a limitation to the current research, one objective of this paper was to explore the use of existing data to uncover dimensions of safety culture. As such the researchers have considered this limitation acceptable given the exploratory nature of the research.
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Finally, although one of the strengths of thematic analysis is the ability to identify themes in a “bottom-up” fashion, this can sometimes lead to less defined boundaries between themes. This is especially true given the multifaceted nature of patient and family interactions when receiving health care. Nonetheless, the themes identified in this study speak to three distinct components of organizational patient safety culture as they relate to continuity of care, communication, and patient and family involvement. Organizations wishing to use existing patient and family stories as data sources should keep these limitations in mind as to the transferability of results to the greater patient population. Practice implications Exploring patient and family member experiences when adverse events occur provides important information regarding organizational patient safety culture. Sharing these perspectives can encourage open communication and a shift in patient culture away from blame or stigma. For health care organizations, this research shows how existing patient satisfaction data or patient narratives can highlight areas of deficiencies in patient safety culture and can help organizations to better tailor patient safety strategies. While many health care organizations currently measure patient satisfaction related to care, greater emphasis on utilizing the patient experience in understanding how patient safety is delivered at the frontlines is needed to appropriately involve patients in improving the safety and quality of care delivered. While the methods used in this research have several limitations that may inhibit greater transferability, the findings provide a starting point for health care organizations who wish to use patient and family experience in new ways. Furthermore, while many health care organizations currently measure patient safety culture using provider perceptions of a number of dimensions, the end-user of the system, the patient, is often excluded from such measurements. This research, however, demonstrates that patients are in a unique position to be able to provide organizations with their experiences of patient safety culture, thereby assessing how well current organizational safety strategies are promoted and used during the patientprovider encounter. As such, it is recommended that administrators look for ways to include patient and family narratives and give voice to the patient experience as an important dimension of assessing organizational patient safety culture.
References Alrubaiee, L. and Alkaa’ida, F. (2011), “Perceptions of healthcare quality – patient trust perceptions”, International Journal of Marketing Studies, Vol. 3 No. 1, pp. 103-127. Arora, V.M., Manjarrez, E., Dressler, D.D., Basaviah, P., Halasyamani, L. and Kripalani, S. (2009), “Hospitalist handoffs: a systematic review and task force recommendations”, Journal of Hospital Medicine, Vol. 4 No. 7, pp. 433-440. Baker, G.R., Norton, P.G., Flintoft, V., Blais, R., Brown, A., Cox, J., Etchells, E., Ghali, W.A., Hebert, P., Majumdar, S.R., O’Beirne, M., Palacios-Derflingher, L., Reid, R.J., Sheps, S. and Tamblyn, R. (2004), “The Canadian adverse events study: the incidence of adverse events among hospital patients in Canada”, Canadian Medical Association Journal, Vol. 170 No. 11, pp. 1678-1686. Bishop, A.C. and Macdonald, M. (2014), “Patient involvement in patient safety: a qualitative study of nursing staff and patient perceptions”, Journal of Patient Safety, Epub ahead of print, doi:10.1097/PTS.0000000000000123.
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Boyatzis, R.E. (1998), Transforming Qualitative Information: Thematic Analysis and Code Development, Sage Publications, Thousand Oaks, CA. Braun, V. and Clarke, V. (2006), “Using thematic analysis in psychology”, Qualitative Research in Psychology, Vol. 3 No. 2, pp. 77-101. Canadian Patient Safety Institute (2012), “About”, available at: www.patientsafety institute.ca/ English/About/Pages/default.aspx (accessed April 13, 2015). Claridge, T. and Sanders, J. (2007), “Patient safety culture”, in Sanders, J. and Cook, G. (Eds), ABC of Patient Safety, Blackwell Publishing Ltd., Malden, MA, pp. 20-24.
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Clarke, A., Hanson, E.J. and Ross, H. (2003), “Seeing the person behind the patient: enhancing the care of older people using a biographical approach”, Journal of Clinical Nursing, Vol. 12 No. 5, pp. 697-706. Davies, J.M., Hebert, P. and Hoffman, C. (2003), “The Canadian patient safety dictionary”, available at: www.royalcollege.ca/portal/page/portal/rc/common/documents/publications/ patient_safety_dictionary_e.pdf (accessed April 13, 2015). Davis, R.E., Jackline, R., Sevdalis, N. and Vincent, C.A. (2007), “Patient involvement in patient safety: what factors influence patient participation and engagement”, Health Expectations, Vol. 10 No. 3, pp. 259-267. Doyle, C., Lennox, L. and Bell, D. (2013), “A systematic review of evidence on the links between patient experience and clinical safety and effectiveness”, BMJ Open, Vol. 3 No. 1, p. e001570, doi:10.1136/bmjopen-2012-001570. Ekman, I., Swedberg, K., Taft, C., Lindseth, A., Norberg, A., Brink, E., Carlsson, J., Dahlin-Ivanoff, S., Johansson, I.-L., Kjellgren, K., Lidén, E., Öhlén, J., Olsson, L.-E., Rosén, H., Rydmark, M. and Sunnerhagen, K.S. (2011), “Person-centered care. Ready for prime time”, European Journal of Cardiovascular Nursing, Vol. 10 No. 4, pp. 248-251. Flin, R., Burns, C. and Mearns, K. (2006), “Measuring safety climate in health care”, BMJ Quality & Safety, Vol. 15 No. 2, pp. 109-115. Gallagher, T.H., Studdert, D. and Levinson, W. (2007), “Disclosing harmful medical errors to patients”, New England Journal of Medicine, Vol. 356 No. 26, pp. 2713-2719. Gilburt, H., Rose, D. and Slade, M. (2008), “The importance of relationships in mental health care: a qualitative study of service users’ experiences of psychiatric hospital admission in the UK”, BMC Health Services Research, Vol. 8, p. 92, doi:10.1186/1472-6963-8-92. Health and Safety Commission Advisory Committee on the Safety of Nuclear Installations (1993), Organizing for Safety: Third Report of the ACSNI Study Group on Human Factors, HSE Books, Sudbury. Jackson, J.L., Chamberlin, J. and Kroenke, K. (2001), “Predictors of patient satisfaction”, Social Science and Medicine, Vol. 52 No. 4, pp. 609-620. Koekkoek, B., Hutschemaekers, G., van Meijel, B. and Schene, A. (2011), “How do patients come to be seen as ‘difficult’?: A mixed-methods study in community mental health care”, Social Science & Medicine, Vol. 72 No. 4, pp. 504-512. Leonard, M., Graham, S. and Bonacum, D. (2004), “The human factor: the critical importance of effective teamwork and communication in providing safe care”, BMJ Quality & Safety, Vol. 13 No. S1, pp. 85-90. Lincoln, Y.S. and Guba, E.G. (1985), Naturalistic Inquiry, Sage Publications Ltd., Thousand Oaks, CA. McCabe, C. (2004), “Nurse-patient communication: an exploration of patients’ experiences”, Journal of Clinical Nursing, Vol. 13 No. 1, pp. 41-49.
Manary, M.P., Boulding, W., Staelin, R. and Glickman, S.W. (2013), “The patient experience and health outcomes”, New England Journal of Medicine, Vol. 368 No. 3, pp. 201-203. Morath, J. and Leary, M. (2004), “Creating safe spaces in organizations to talk about safety”, Nursing Economics, Vol. 22 No. 6, pp. 344-351. Patak, L., Wilson-Stronks, A., Costello, J., Kleinpell, R.M., Henneman, E.A., Person, C. and Happ, M.B. (2010), “Improving patient-provider communication: a call to action”, Journal of Nursing Administration, Vol. 39 No. 9, pp. 372-376.
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Patterson, E.S. and Wears, R.L. (2010), “Patient handoffs: standardized and reliable measurement tools remain elusive”, Joint Commission Journal on Quality and Patient Safety, Vol. 36 No. 2, pp. 52-61. Peters, S., Rogers, A., Salmon, P., Gask, L., Towey, M., Clifford, M., Dowrick, C. and Morris, R. (2009), “What do patients choose to tell their doctors? Qualitative analysis of potential barriers for managing unexplained symptoms”, Journal of General Internal Medicine, Vol. 24 No. 4, pp. 443-449. Sammer, C.E., Lykens, K., Singh, K.P., Mains, D.A. and Lackan, N.A. (2010), “What is patient safety culture? A review of the literature”, Journal of Nursing Scholarship, Vol. 42 No. 2, pp. 156-165. Solet, D.J., Norvell, J.M., Rutan, G.H. and Frankel, R.M. (2005), “Lost in translation: challenges and opportunities in physician-to-physician communication during patient handoffs”, Academic Medicine, Vol. 80 No. 12, pp. 1094-1099. Thórarinsdóttir, K. and Kristjánsson, K. (2014), “Patients’ perspectives on person-centered participation in healthcare: a framework analysis”, Nursing Ethics, Vol. 21 No. 2, pp. 129-147. (The Appendix follows overleaf.)
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Female
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Female
Female
Female
T.S.
B.W.
M.M.
S.R.
J.B.D.
Table AI. Interview participant information
Participant initials
Daughter
Mother
Mother
Son-in-law
(continued )
After over a year of cold-like symptoms, the patient strongly felt there was something else wrong and booked a chest X-ray. The doctor determined that the patient was in heart failure. Patient was able to recover from heart failure and was prescribed medication to regulate her ejection fraction. Because the medication was causing her constant fatigue, her regular doctor began reducing her dosage. When the patient went back to the cardiologist, it was found that her ejection fraction had drastically dropped again because of the reduction in medication Interview participant’s mother-in-law had been recovering from cancer in a geriatric ward. She was a very active person before and throughout the recovery, but one day when her family had come to visit, she was comatose in her hospital bed. A nurse explained that this was normal because of her age and low blood pressure. A few weeks later another nurse admitted that the mother-in-law had been given the wrong medication, which is what triggered the comatose reaction Interview participant’s young daughter passed away and her death was ruled as “natural causes.” The daughter had many health ailments throughout her life including bipolar disorder as well as low potassium levels. Although it was recommended in her file that she should not be prescribed lithium because of the potassium deficiency, the next psychiatrist that took over prescribed it anyways. The risks were not made clear to her and she began to experience rapid heartbeats. Cardio checkups were done but the doctor failed to inform the girl of the results therefore she kept taking the lithium and eventually died Interview participant’s daughter passed away at 7 months old. She suffered from an intracranial hemorrhage and was taken off life support four days later in the hospital. Her daughter also had ITP (idiopathic thrombocytopenic purpura – bleeding from an unknown source). When the mother asked for the resident to visit her baby before her death, the staff on call would not do this for her, they insisted she was experiencing gastro pain. After almost an entire night, the child ended up dying from the intracranial hemorrhage Interview participant’s father had a bad cough and daughter recognized this as a symptom of atrial fibrillation. A week after her father returned home from the hospital, he had a stroke. He was also found to have malignant nodules in his rectum and had to have them surgically removed. After this surgery, his condition began to deteriorate quickly. Soon after he had a heart attack and became comatose. His family decided to discontinue therapy and have been advocating for practicing patient-centered care
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Patient
Relation to patient
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R.M.
C.K.
J.T.
A.F.
D.D.
T.M.
Participant initials
Relation to patient
Patient
Mother
Daughter
Daughter-inlaw
Daughter and friend
Mother
Demographics
Female
Female
Female
Female
Female
Female
Patient had a miscarriage two weeks before the fetus is considered to be a “human baby” and therefore was kept in emergency. Her doctor did not show up until several hours after the ordeal. Patient was given no IV fluids, there was no assistance in cleaning up after the miscarriage. The baby died because of a knot in the umbilical cord Interview participant’s son had been involved in bad car accident and sustained a head injury. Health care staff seemed to be disrespectful during his time of care, offending the mother and father on a few separate occasions. As his condition worsened, he became unusually aggressive and violent. The mother reported this to the health care team but they explained this was normal. He was sent in for more CT scans and was passed between doctors. Eventually it was revealed that their son was brain dead Patient began to develop abdominal swelling and shortness of breath after sustaining a stroke, among other kidney and heart problems. After having more CAT scans, it was determined she had fluid buildup in her lungs. Her mother was very weak at this point and her daughter was holding her up during these scans. Another CAT scan was done while the daughter was not there and her mother fell between the gurney and the wall. She was immediately taken to the emergency ward. The patient ended up passing away shortly after that Her mother-in-law (Fervid) became sick with the flu and became very dehydrated. She was taken into the hospital and given fluids then was allowed to go home yet the symptoms kept persisting. Her cognitive abilities began declining quickly. It was found that her medications were producing an adverse drug reaction. Her medication was changed and within 6 weeks Fervid was back to her normal cognitive functioning but was stuck in bed as the adverse drug reaction caused a lot of muscle deterioration to the point where Fervid required a wheelchair. Fervid passed away a few years later from complications of a reoccurring bacterial infection Interview participant’s father and close friend both passed away at home but had two very different experiences. Her father died several years ago when home care was still in its infancy therefore his care was not the best. He was in a lot of pain as they would not prescribe him much pain medication and he was mostly being taken care of by his family but they did not really know how. Participant’s friend also passed away in her own home but this was years later and a completely different experience. She was well taken care of and was able to decide when she wanted to pass Participant’s daughter passed away at the age of 9. She was born with a genetic abnormality (Trisomy 13). She passed away following surgery on her skull. Her mother requested a review as she did not think her daughter was properly cared for during the surgery. It was found that her death was preventable
Synopsis
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About the authors Dr Andrea C. Bishop, PhD, is a Postdoctoral Fellow at the Dalhousie University, Halifax, Nova Scotia, Canada. Andrea’s current research is aimed at exploring patient engagement and safety during transitions in care. Dr Andrea C. Bishop is the corresponding author and can be contacted at: [email protected] Brianna R. Cregan, BA, is a Psychology/Human Resource Student at the Saint Mary’s University, Halifax, Nova Scotia, Canada. Brianna’s research interests include occupational safety and health, minimizing safety hazards at work and the creation of safety training programs.
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Patient safety culture: finding meaning in patient experiences
Patient safety culture
Andrea C. Bishop School of Nursing, Dalhousie University, Halifax, Canada, and
Brianna R. Cregan Department of Psychology, Saint Mary’s University, Halifax, Canada
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Abstract Purpose – The purpose of this paper is to determine what patient and family stories can tell us about patient safety culture within health care organizations and how patients experience patient safety culture. Design/methodology/approach – A total of 11 patient and family stories of adverse event experiences were examined in September 2013 using publicly available videos on the Canadian Patient Safety Insitute web site. Videos were transcribed verbatim and collated as one complete data set. Thematic analysis was used to perform qualitative inquiry. All qualitative analysis was done using NVivo 10 software. Findings – A total of three themes were identified: first, Being Passed Around; second, Not Having the Conversation; and third, the Person Behind the Patient. Results from this research also suggest that while health care organizations and providers might expect patients to play a larger role in managing their health, there may be underlying reasons as to why patients are not doing so. Practical implications – The findings indicate that patient experiences and narratives are useful sources of information to better understand organizational safety culture and patient experiences of safety while hospitalized. Greater inclusion and analysis of patient safety narratives is important in understanding the needs of patients and how patient safety culture interventions can be improved to ensure translation of patient safety strategies at the frontlines of care. Originality/value – Greater acknowledgement of the patient and family experience provides organizations with an integral perspective to assist in defining and addressing deficiencies within their patient safety culture and to identify opportunities for improvement. Keywords Inclusion, Patient perception, Patient safety, Organizational culture, Patient stories, Patient experiences Paper type Research paper
Introduction With the knowledge that patients are exposed to harm after experiencing adverse events while hospitalized (Baker et al., 2004), improving patient safety practices and patient safety culture has been at the forefront of a number of domestic and international campaigns. Patient safety has been defined as “the reduction and mitigation of unsafe acts within the health care system, as well as through the use of best practices shown to lead to optimal patient outcomes” (Davies et al., 2003). In Canada alone, research estimates that out of 2.5 million hospital admissions per year, 185,000 admissions are associated with an adverse event. Out of the 185,000, it is estimated that 70,000 of these events are preventable (Baker et al., 2004). Given this, the Canadian Patient Safety Institute (CPSI) was formed in 2003 with the intention of improving patient safety and overall quality of health care in Canada. CPSI serves as a national leader on developing evidence-informed patient safety products and improving the sharing of and learning The authors would like to thank Dr Mark Fleming for his guidance throughout the research. Conflicts of interests: the authors declare no conflicts of interest.
595 Received 12 March 2014 Revised 30 May 2014 15 December 2014 31 March 2015 13 April 2015 Accepted 21 April 2015
International Journal of Health Care Quality Assurance Vol. 28 No. 6, 2015 pp. 595-610 © Emerald Group Publishing Limited 0952-6862 DOI 10.1108/IJHCQA-03-2014-0029
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from patient safety incidents and interventions (Canadian Patient Safety Institute, 2012). CPSI also promotes collaborative care in which the patient becomes part of a patient safety team. This allows the individual to play an integral role in the setting of patient safety strategies and helps ensure that the patient voice is captured. In an effort to capture the patient and family perspective, patients and family members who have been affected by an adverse event are interviewed as part of Canadian Patient Safety Week to provide a first-hand exploration of issues central to patient care and safety. These videos have been used to educate health care providers and administrators about the types of events that can occur during the process of providing hospital care and also the struggles that many patients and their families have in trying to be heard when problems occur. As such, patient experiences can be used as a unique resource in understanding what patient safety looks like at the frontlines of health care and to identify patient safety culture improvements. Patient safety culture Safety culture is defined as “the product of individual and group values, attitudes, perceptions, competencies, and patterns of behavior that determine the commitment to, and the style and proficiency of, an organization’s health and safety management” (Health and Safety Commission Advisory Committee on the Safety of Nuclear Installations, 1993). As such, patient safety culture refers to the norms, attitudes, and behaviors within an organization that serve to uphold patient safety. A positive patient safety culture refers to a number of characteristics within an organization that allows patient safety to be a priority in the health care organization, including open communication, a no blame approach to incident reporting, committed leadership, ongoing organizational learning, and the proactive identification of safety threats (Claridge and Sanders, 2007). Many patient safety culture tools currently rely on surveying and seeking feedback from health care providers and staff on dimensions of safety culture (Flin et al., 2006). However, patient and families are important stakeholders to a health care organization’s patient safety culture, and have traditionally been underutilized as an important source of information. Recognition of patient-centeredness as a subculture helps to ensure that patient involvement, experiences, and stories are all captured within patient safety culture measurement (Sammer et al., 2010). A critical component of patient-centeredness is the concept that patients should be active members of their own health care. Therefore, delving into the patient experience allows for a greater understanding of specific factors that contribute to patient feelings of empowerment and engagement in care. Patient experience Patients are in a unique position to provide information on not only the care they receive, but also on the many interactions between health care providers and patients that they witness while hospitalized. In this way, patient experiences can contribute a distinct perspective to patient safety culture, which in turn may help organizations design safer systems (Sammer et al., 2010; Morath and Leary, 2004). Further, patient experience is positively associated with both safety and health outcomes in a variety of health care settings (Doyle et al., 2013) and it has been argued that patient experience is strongly influenced by the patient-provider encounter (Manary et al., 2013). The importance of trust, effective communication, empathy, and a sense of “relationship” with their health care provider have all been identified as important factors contributing to the patient experience (Gilburt et al., 2008; Jackson et al., 2001; McCabe, 2004; Peters et al., 2009).
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Patients can experience patient safety culture through all aspects of the health care encounter, including how they are involved in treatment options, the communication styles of staff members, the coordination of their care and how they are treated. Additionally, previous work has indicated that patients may perceive patient safety as feeling in control of their care and connected with their health care providers (Bishop and Macdonald, 2014). Therefore, these are important aspects of the patient experience to understand when assessing patient safety culture. In instances when adverse events occur, the patient and family experience of the event can help organizations to identify areas of weaknesses in their culture and opportunities for future failures to occur. While there has been a large emphasis on disclosure of harm to patients and family members when it occurs (Gallagher et al., 2007), there is less knowledge about how patient and family stories of the events can help organizations to recover and improve. Many organizations currently collect patient and family experience data and stories for clinical and administrative education purposes. This exploratory study aims to utilize available video interviews in order to explore patient and family experiences of patient safety culture and the impact of adverse events. Given the importance of incorporating patient experience when assessing safety culture, the objective of this research was to determine how patient and family stories can inform our understanding of patient safety culture and how patient safety culture impacts the patient experience. Methods A total of 11 patient and family stories concerning adverse events were examined in September 2013 using video recorded interviews that are publically available on the CPSI web site (www.patientsafetyinstitute.ca/English/news/cpsw/Pages/ PatientStories.aspx). All videos were recorded in 2012 for use during Canada’s Forum on Patient Safety and Quality. As part of the forum, patient and family videos are shown to provide a unique patient perspective and highlight areas for improvement, ultimately allowing administrators and practitioners to reflect on their own practices. Patient and family stories are selected on the basis of two criteria: first, the person’s readiness to tell their story while being video-taped; and second, the connection of the story to the theme of the forum. Additionally, CPSI strives to ensure variation in the experiences presented. Video participants undergo a semi-structured interview performed by a third party individual aimed at eliciting their experiences and probing for additional detail when necessary. The length of the videos range between ten and 11 minutes and are edited by CPSI for length and presentation before being placed on the web site. Each interview was transcribed verbatim by a member of the research team (B.C.) and was then collated as one complete data set. Thematic analysis was used to perform qualitative inquiry of the subsequent data set by identifying existing themes. A theme is a “pattern found in the information that at a minimum describes and organizes the possible observations and at a maximum interprets aspects of the phenomenon” (Boyatzis, 1998, p. vii). Thematic analysis was conducted using the six steps outlined by Braun and Clarke (2006), including: immersion/familiarization; generating initial codes; searching for themes; reviewing themes; defining and naming themes; and producing the report. However, one of the strengths of thematic analysis as a qualitative method is that it is independent of theory (Braun and Clarke, 2006), and as such, provides greater flexibility during analysis. For this research, analysis was inductive in nature, meaning
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that no theoretical framework was applied to coding; rather, codes were identified from the data itself. Furthermore, the analysis was semantic in nature, meaning that themes are identified based on participant statements without further interpreting underlying meanings. Once the transcribed data set was complete, an initial read through of all narratives was conducted to ensure familiarization with the data and to produce initial notes and thoughts about the data. Both researchers participated in the initial coding, with the intention of identifying as many codes as possible and each data extract being coded inclusively. The initial codes and extracts were then categorized into potential themes. The entire data set was then reread to review that the potential themes captured all data extracts and fit all data sources. Once the themes were named and defined, both researchers reviewed the coding framework and themes against the data set and coded individually to obtain inter-rater reliability. The two researchers then met with one another to discuss the findings and to review the final themes. The criteria suggested by Lincoln and Guba (1985) to ensure trustworthiness of qualitative inquiry were used as guidelines during the research in order to ensure credibility of the findings. All qualitative analysis was done using NVivo 10 research software. As this study involved secondary analysis of publically available data, ethical approval was not required. Findings After performing thematic analysis on the data set, a total of three themes were identified: first, Being Passed Around; second, Not Having the Conversation; and third, the Person Behind the Patient. Each theme is explored in detail below. Information regarding participant demographics and stories can be found in the Appendix. Being Passed Around This theme encapsulates instances when patients and family members felt that there was a gap in the continuity of care. As a multitude of health care providers can be involved in someone’s care plan, patient care was seemingly fragmented at times. Providers were not always able to provide a diagnosis based on history, but rather on present conditions alone. A common shared element of Being Passed Around was the lack of knowledge being shared among health care team: […] we wanted to get doctors, nurses, clinicians to speak to each other. Better. To listen to each other and an important part of that better communication is the listening element. So that clinicians listen to patients and speak to them in a way that they can understand. It’s changing the cycle from “I’m the doctor I’m the nurse, you’re the patient to this is a healthcare team and you’re part of the team” (B.W.).
Another description of this theme that was frequently elicited was the feeling of responsibility being dispersed too thinly between providers, “had there been more of a team work going on some follow-up, some follow-through some action plans, that it would have been caught” (T.S.), and a need for more follow-up after an adverse event has occurred “they classify her death as natural and close the file. For our family that wasn’t enough. We said we really have to know more, we want to know what’s gone on” (M.M.). Many family members and patients felt like they were being handed off among different providers, and consequently felt as though it was hard to engage as member
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of the health care team. One family member shared her thoughts after caring for her mother-in-law:
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It’s very important to involve the family. Families have to understand that they may have to ask to give input. I would hope that the medical system will start asking for input more from families and caregivers, but if they’re not then, as a family, do it respectfully, but give your input on your frail elder let them know how they usually are. Tell them if there’s something happening you don’t understand trying and get an answer (J.T.).
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Those who had been through similar experiences of being passed around noted that they wanted to “see specialists and doctors playing closer to each other” (T.S.). Other participants reflected the theme of Being Passed Around in a different sense. In connection to a lack of shared knowledge, a feeling of uncertainty as to who was ultimately responsible for a patient’s care was also frequently found. One participant shared her concerns with a cardiologist who would not take responsibility for her father’s care, “I said ‘I’m just concerned that my dad has not been put on Warfarin,’ ‘Oh,’ he said ‘you don’t have to worry about that, he’s got a window of a couple of months,’ meaning he could be in atrial fibrillation for a couple of months before we have to worry. The cardiologist said, ‘well your dad’s going to go home in a couple of weeks to Canada, so just have him see a cardiologist there’ ” ( J.B.). Within the complexity of receiving health care, patients and family members are often unaware of the ongoing provider-provider communication, as handoffs rarely occur at the bedside. For one family member, assuming that a handoff between surgeons had occurred led to irreversible harm: And the neurosurgeon and I, and the nurse had a conference um, he told me his, Vance’s condition was very grave and I felt so bad for the neurosurgeon because he had come into this unknown. The first doctor that had seen Vance had gone away for the weekend and we assumed erroneously that a handover had been done, that this doctor would be taking over Vance’s care, but he didn’t even know Vance was there. There was no handover. So this poor doctors coming in blindly (D.D.).
For another family member, ongoing communication between providers regarding treatment decisions was assumed; however, it was later found out that the provider had no responsibility to heed recommendations made by others: The report that said Martha shouldn’t be giving lithium was written by a psychiatrist because they’re the ones that treat bipolar disorder. But the next psychiatrist that took over when this um, psychiatrist left the practice decided that he didn’t think the risk with that great. And he didn’t discuss the risk with Martha, he just um, told her that she should try lithium and that it often had a positive effect on people. So there’s no obligation on one doctor’s part to follow the recommendations of another doctor (M.M.).
Not Having the Conversation Not Having the Conversation stems from instances where patients and family members and providers were hesitant to speak up or felt defeated when they did. In many instances, not having the conversation led to the inability to prevent further deterioration in a patient’s condition or to prevent an adverse event from occurring. For patients and family members, not having the conversation involved identifying that something was wrong with the situation, but either not following their intuition or not knowing how to say what they needed to communicate. At times a patient or
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a family member felt as if they were silenced when they did try to bring something to their health care provider’s attention. Many stories highlighted instances when patients and family members had an intuitive feeling that something wrong, but for one reason or another chose not to speak up about it. Patients and family members characterized this feeling of not being comfortable, or a feeling that something worse was going on “initially we thought Claire’s care in the ICU we, was as it should be, um, but after the dust settled, we came to realize or I came to realize something didn’t sit right” (R.M.). For one family, it was an innate feeling that something was really wrong with their family member’s health, but they felt they could not say anything because they were not medical professionals: So we asked the nurse, and the nurse told us your mother, mother-in-law, is over 80 years old, she has low blood pressure, this is quite normal. This happens all the time. We didn’t really feel comfortable that that was the answer, it had never happened before, but again, we are not medical professionals and we accepted the word of the doctor and the nurse (B.W.).
This sentiment was echoed by another family member, “we were really worried about her because she wasn’t, she really wasn’t well and we weren’t sure, sort of, what was going to be happening but the care she got was excellent so we were, we were going on the premise that she would be that she would be fine” (A.F.). In many cases, there was a feeling among patients and family members that even when they did try to speak up their concerns were dismissed, sometimes even multiple times. Patients and family members also spoke of their perceptions of health care providers during the communication process, identifying their perceptions that health care providers did not find it necessary to tell them everything or dismissing concerns when they were raised. In one instance, a family member tried repeatedly to voice her concerns about the deterioration of her daughter’s condition: I was just, you know, upset that they weren’t really listening to me, they, they didn’t do any more extra monitoring, they did call the, the resident in and she basically doesn’t want to do anything. She says, “You know what she’s got, gastro. You know we realized that she has this ITP, we’re not going to do anything more than what’s ordered,” which was the prednisone and “no we will not start a line, she does not need it,” I said, “I think we need to do, you know, something more,” I was pushing for it and she was just like “Well you can, you can, you can discuss that with that with the with the specialist in the morning” and I was just like, “I think, I think that’s going to be too late.” And then she just promptly left. Whatever I said just was not sinking in, was not, you know, seemed to be computing with anyone (S.R.).
Another family member who had repeatedly brought concerns to the care team only to have them dismissed, echoed this feeling of not being heard. Once again, although concerns regarding their family member’s condition were voiced, they were repeatedly ignored: “For three days I’ve been trying to tell them that Vance’s condition is getting worse.” And he turned to the nurse and said, “What is she talking about?” And the nurse just shrugged her shoulders. And it was the same nurse who had told Vance he wasn’t going to die. She happened to be on that day or that evening. And she just shrugged her shoulders and said “Well, she’s had some concerns over the last few days” (D.D.).
Furthermore, when concerns were brought up the health care provider was reluctant to acknowledge the impact. For some patients/family members there was a sense of not
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owning up when an adverse event occurred and subverting the truth. One family member spoke of the harm that can occur when an adverse event occurs and it is covered up “it is important for organizations to recognize that they can inflict a second type of harm onto patients and families when they don’t step up and acknowledge the responsibility and the accountability that they’ve had in an adverse event” (S.R.). In this instance, the conversation about what went wrong did not take place and left the family feeling frustrated and in need of more answers. Even when they felt it might not be right, many patients and families reported accepting what their health professional said at face value, which prevented them from voicing concerns. Patients/family members spoke of implicitly trusting their health care provider, with family member remarking “but I hung the phone up and I thought, ‘well he’s a cardiologist, he should know’” (J.B.D.). Although this family member was a nurse by training, it was assumed that the specialist would know the correct procedure. The Person Behind the Patient The theme of the Person Behind the Patient was described as feeling like a number, or the idea that sometimes the actual person behind the illness is omitted from care. One family member described it as “you lose your power, you can be the biggest corporate magnet, but when you go in, you’re just another body” (B.W.). Many participants echoed this sense of losing their identity in the process of becoming a patient and being treated as an extension of one’s illness, without knowledge of their background. One family member shared, “the big problem for us looking back is that these psychiatrists they do not know the people they’re talking to. All they see is the state they’re in right now and with Fervid that was delirious, hallucinating and so on. He didn’t know her baseline, which we, as the family, know” (J.T.). The need to better understand the patient’s baseline and normal behavior was discussed by a number of patients and family members as a precaution against health care providers assuming that a patient’s current state is normal: And I mentioned my concerns to the staff many, many times over the course of the next three days. I mentioned his, his abusive, aggressive behavior, which was not like him, and I know it’s expected in head injuries you quite often see that. But it just wasn’t Vance. And when I mentioned that to one of the nurses she said, “Well he’s a rig worker, we expect that.” And I said, “But, regardless, that’s not our son there’s something else going on here something’s changing getting worse” (D.D.).
Seeing the Person Behind the Patient also spoke to the need to be cared for and to be treated compassionately. One patient described a particularly illustrative experience: After about twenty minutes, I was triaged and I was told because I was two weeks shy of the hospital policy for when they consider your baby human that I would be kept in Emerg to deliver and from there that they got me a room but we ran into major issues because my doctor never ended up showing up […] And then for seven hours I was left completely by myself with my husband where we were told to really just clean up our own blood and our mess and for me to try not to bleed on the floor and a soiled laundry hamper was brought to us with stacks of towels (T.M.).
This participant was upset after being left for hours on her own during a traumatic event. As another interview participant put it, “This idea of patient centered care it can’t just be a phrase, it can’t just be a marketing idea, it has to be real […] we need to
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practice compassionately” (J.B.D.). Being able to practice compassionately incorporates an awareness or understanding around each patient’s needs, which is tied into many other things other than illness itself. Another family caregiver echoed a similar sentiment in relation to practicing compassionately and seeing the person behind the illness: I want the healthcare system to be more humane more empathetic, kinder. We’re all human beings; we all deserve to have the best possible death. And we know now a lot more about how to make that happen, it’s not easy because it’s very time consuming and it’s very hard on the heart but ultimately it’s so rewarding to see that you can make a difference in someone’s life at a crucial time in their passage (C.K.).
Finally, in some cases patients and families reported instances of being labeled “difficult” or making assumptions. One family member recounted how her sick father had been made to walk even though he wasn’t feeling well “I mean, you’ve been vomiting for five weeks, you don’t even have the strength to stand, but they wanted him to move, but then they started to label him as not wanting to walk as though he just was being stubborn” (J.B.D.). Discussion This exploratory study provides a unique approach to analyzing patient and family data as it relates to patient safety culture. The themes identified in this study speak to the experiences of patients and families as they try to navigate the health care system while encountering a number of gaps in the continuity of care. Further, it identifies the need to improve provider-patient communication and to meaningfully engage the patient and their family members as integral members of the health care team. The patient and family experiences captured in this study also speak to the breadth and depth of data that can be captured when patient and family experiences of adverse events are elicited. With regards to the findings of this study, previous research suggests that the theme of Not Having the Conversation is a prevalent feeling among patients who have experienced an adverse event. In this study, many patients and family members found it difficult to speak up for themselves, and when they did they sometimes found themselves being silenced. McCabe (2004) found a similar theme titled Lack of Communication when interviewing patients about their experience with health care providers during their hospital stay. In that study, patients reported feeling misunderstood and not heard as some nurses made assumptions about their concerns or needs. Furthermore, patients felt as though some nurses were generally unaware of their emotional disposition and were inattentive to their feelings. Similar descriptions were found in patient and family narratives of their interactions with health care providers in this study. Interestingly, although a few of the family members included in this study were health care providers themselves, there still was a reluctance on their part to speak up when they had concerns or to challenge other health care providers. Patak et al. (2010) state that patients have a right to be listened to by their providers and that in order for communication to be effective, information must be complete, accurate, timely, unambiguous, and understood by the patient. However, previous research has identified a number of characteristics associated with the patient, provider, and clinical encounter that can influence the likelihood of patient involvement in their care (Davis et al., 2007). Patient and family experiences in this study speak to the challenge for
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patients when trying to communicate with providers. This is an important aspect of patient safety culture to consider when encouraging patients and families to be more involved in their care. The role of trust within the patient-provider relationship is a common topic among other safety research. In this study, patients and families reported placing trust in their health care provider to provide the right treatment, with this sometimes leading to a reluctance to ask questions or to listen to “gut feelings.” Gilburt et al. (2008) found that trust is one of the most commonly related variables to patient experience in a hospital setting. Results showed a reported emphasis on mistrust of health care providers when staff did not meet patients’ expectation of professionalism. Patient satisfaction with their care has also been shown to mediate patient perceptions of health care quality and patient trust (Alrubaiee and Alkaa’ida, 2011), suggesting that patient trust may be mediated by a number of factors related to care received in hospital and expectations of what that care should look like. Patient and family expectations in this study highlighted a belief that the health care system is safe; however, once an adverse event has occurred, many patients and family members became more aware of potential patient safety issues and identified the need to be more vigilant when receiving care. Health care provider expectations were also discussed by patients and family members. Narratives in this study highlighted several incidents where assumptions were made about patients or their family members, whether it is about their baseline health or that they were being “difficult.” The phenomenon of the “difficult” patient arises when health care providers identify certain characteristics of a patient and relate it to a specific attribution, such as not cooperating with health care providers and/or not wanting to do anything to improve their condition (Koekkoek et al., 2011). When this labeling occurred, patients and family members spoke of the “blindness” of many health care providers to seeing the true severity of the patient’s condition as well as a reluctance to further speak up so as to not make matters worse. Communication failures between health care providers were also commonly spoken to by patients and family members, with many of them assuming that their health care providers were communicating their important heath information. However, in many instances this was not the case. According to Leonard et al. (2004), communication failures are one of the main causes of patient adverse events. It is suggested that instead of structuring safety and quality around the performance of the individual practitioner, teamwork among health care providers, patients and family members would be a more effective delivery method. The theme of Being Passed Around highlights the expectation that care providers consistently follow standard communication and handoff procedures, when this may not always be the case. Research has identified a number of barriers to handoff procedures in the hospital setting, including the physical setting where the handoff takes place, the medium of communication, time and convenience issues, and discrepancies in handoff education (Solet et al., 2005). Research also shows that handoffs and gaps in continuity of care can result in significant adverse events and suboptimal patient care (Arora et al., 2009); however, while the use of standardized procedures and protocols is touted to reduce confusion and ambiguity between health care providers, there is little evidence of their impact on patient safety (Patterson and Wears, 2010). Finally, patients and family members spoke to the need to see more than just a patient with a disease, but rather to engage them as partners in their care and to understand their unique needs. A large concern voiced by patients and their family
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members was the lack of involvement they had in decisions about their treatment. Clarke et al. (2003) found a similar theme of “seeing the Person Behind the Patient” through a biographical approach to understanding the patient experience. Better understanding of the patient’s lifestyle, as well as baseline characteristics, was reported by patients and family members as being integral to ensuring that the right care is being provided and to gauge the severity of illness presentations. Giving individuals a chance to express themselves also engages them in their own health care treatment (Ekman et al., 2011). Family members and friends may also feel more strongly supported by health care providers when they took an individual interest in the person (Clarke et al., 2003). To establish a trusting relationship with their patient, health care providers should create an inviting environment for the patient to ask questions, show genuine attention and interest in the patient aside from their illness, and be respectful of the patient as an equal partner (Thórarinsdóttir and Kristjánsson, 2014). Limitations This research was primarily limited by the utilization of CPSI video interviews as a basis for the thematic analysis. Although the CPSI patient and family stories contribute valuable information about patient safety culture, the videos present a revised and edited perspective. With this in mind, the edited videos could carry certain biases, whereas unedited videos may have provided a more objective look at each individual’s story. Nonetheless, they still provide valuable insight for patient safety culture from individuals who personally experienced an adverse event in a hospital setting. In relation to the utilization of CPSI videos, another limitation found within this research was the inability to ask follow-up questions with the interviewees. In a few cases, researchers were left with questions about the outcome of an adverse event. As the interviewees were not available for comment, researchers could only work with the given information. Follow-up questions could have been used to better probe some of the interviewees in order to explain situations further or to have a better understanding of the players involved. Furthermore, patient and family experiences and narratives could not be triangulated with other first-hand accounts of the health care providers involved or with primary documentation of the event. Nonetheless, the researchers felt that the full timelines of these stories were presented and therefore offered good insight into the issues. We acknowledge that this paper focusses mainly on a deficit perspective of patient safety culture after an adverse event has occurred. Given that the data analyzed was edited to provide accounts of adverse events experienced by patients and family members, there is a lack of data regarding positive experiences of patient safety culture that can be used to provide guidance in this area. However, as this research intends to focus on the improvement of patient safety culture, the nature of the research is to create awareness around pre-existing gaps within the system. There are some potential limitations with regard to data saturation. Data saturation is important in qualitative inquiry in that it assures the researchers that all experiences have been captured and uncovered. Given that there were a set number of interviews to analyze in this data set it is possible that further experiences could have been elicited by expanding the sample size. While this is a limitation to the current research, one objective of this paper was to explore the use of existing data to uncover dimensions of safety culture. As such the researchers have considered this limitation acceptable given the exploratory nature of the research.
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Finally, although one of the strengths of thematic analysis is the ability to identify themes in a “bottom-up” fashion, this can sometimes lead to less defined boundaries between themes. This is especially true given the multifaceted nature of patient and family interactions when receiving health care. Nonetheless, the themes identified in this study speak to three distinct components of organizational patient safety culture as they relate to continuity of care, communication, and patient and family involvement. Organizations wishing to use existing patient and family stories as data sources should keep these limitations in mind as to the transferability of results to the greater patient population. Practice implications Exploring patient and family member experiences when adverse events occur provides important information regarding organizational patient safety culture. Sharing these perspectives can encourage open communication and a shift in patient culture away from blame or stigma. For health care organizations, this research shows how existing patient satisfaction data or patient narratives can highlight areas of deficiencies in patient safety culture and can help organizations to better tailor patient safety strategies. While many health care organizations currently measure patient satisfaction related to care, greater emphasis on utilizing the patient experience in understanding how patient safety is delivered at the frontlines is needed to appropriately involve patients in improving the safety and quality of care delivered. While the methods used in this research have several limitations that may inhibit greater transferability, the findings provide a starting point for health care organizations who wish to use patient and family experience in new ways. Furthermore, while many health care organizations currently measure patient safety culture using provider perceptions of a number of dimensions, the end-user of the system, the patient, is often excluded from such measurements. This research, however, demonstrates that patients are in a unique position to be able to provide organizations with their experiences of patient safety culture, thereby assessing how well current organizational safety strategies are promoted and used during the patientprovider encounter. As such, it is recommended that administrators look for ways to include patient and family narratives and give voice to the patient experience as an important dimension of assessing organizational patient safety culture.
References Alrubaiee, L. and Alkaa’ida, F. (2011), “Perceptions of healthcare quality – patient trust perceptions”, International Journal of Marketing Studies, Vol. 3 No. 1, pp. 103-127. Arora, V.M., Manjarrez, E., Dressler, D.D., Basaviah, P., Halasyamani, L. and Kripalani, S. (2009), “Hospitalist handoffs: a systematic review and task force recommendations”, Journal of Hospital Medicine, Vol. 4 No. 7, pp. 433-440. Baker, G.R., Norton, P.G., Flintoft, V., Blais, R., Brown, A., Cox, J., Etchells, E., Ghali, W.A., Hebert, P., Majumdar, S.R., O’Beirne, M., Palacios-Derflingher, L., Reid, R.J., Sheps, S. and Tamblyn, R. (2004), “The Canadian adverse events study: the incidence of adverse events among hospital patients in Canada”, Canadian Medical Association Journal, Vol. 170 No. 11, pp. 1678-1686. Bishop, A.C. and Macdonald, M. (2014), “Patient involvement in patient safety: a qualitative study of nursing staff and patient perceptions”, Journal of Patient Safety, Epub ahead of print, doi:10.1097/PTS.0000000000000123.
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Boyatzis, R.E. (1998), Transforming Qualitative Information: Thematic Analysis and Code Development, Sage Publications, Thousand Oaks, CA. Braun, V. and Clarke, V. (2006), “Using thematic analysis in psychology”, Qualitative Research in Psychology, Vol. 3 No. 2, pp. 77-101. Canadian Patient Safety Institute (2012), “About”, available at: www.patientsafety institute.ca/ English/About/Pages/default.aspx (accessed April 13, 2015). Claridge, T. and Sanders, J. (2007), “Patient safety culture”, in Sanders, J. and Cook, G. (Eds), ABC of Patient Safety, Blackwell Publishing Ltd., Malden, MA, pp. 20-24.
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Clarke, A., Hanson, E.J. and Ross, H. (2003), “Seeing the person behind the patient: enhancing the care of older people using a biographical approach”, Journal of Clinical Nursing, Vol. 12 No. 5, pp. 697-706. Davies, J.M., Hebert, P. and Hoffman, C. (2003), “The Canadian patient safety dictionary”, available at: www.royalcollege.ca/portal/page/portal/rc/common/documents/publications/ patient_safety_dictionary_e.pdf (accessed April 13, 2015). Davis, R.E., Jackline, R., Sevdalis, N. and Vincent, C.A. (2007), “Patient involvement in patient safety: what factors influence patient participation and engagement”, Health Expectations, Vol. 10 No. 3, pp. 259-267. Doyle, C., Lennox, L. and Bell, D. (2013), “A systematic review of evidence on the links between patient experience and clinical safety and effectiveness”, BMJ Open, Vol. 3 No. 1, p. e001570, doi:10.1136/bmjopen-2012-001570. Ekman, I., Swedberg, K., Taft, C., Lindseth, A., Norberg, A., Brink, E., Carlsson, J., Dahlin-Ivanoff, S., Johansson, I.-L., Kjellgren, K., Lidén, E., Öhlén, J., Olsson, L.-E., Rosén, H., Rydmark, M. and Sunnerhagen, K.S. (2011), “Person-centered care. Ready for prime time”, European Journal of Cardiovascular Nursing, Vol. 10 No. 4, pp. 248-251. Flin, R., Burns, C. and Mearns, K. (2006), “Measuring safety climate in health care”, BMJ Quality & Safety, Vol. 15 No. 2, pp. 109-115. Gallagher, T.H., Studdert, D. and Levinson, W. (2007), “Disclosing harmful medical errors to patients”, New England Journal of Medicine, Vol. 356 No. 26, pp. 2713-2719. Gilburt, H., Rose, D. and Slade, M. (2008), “The importance of relationships in mental health care: a qualitative study of service users’ experiences of psychiatric hospital admission in the UK”, BMC Health Services Research, Vol. 8, p. 92, doi:10.1186/1472-6963-8-92. Health and Safety Commission Advisory Committee on the Safety of Nuclear Installations (1993), Organizing for Safety: Third Report of the ACSNI Study Group on Human Factors, HSE Books, Sudbury. Jackson, J.L., Chamberlin, J. and Kroenke, K. (2001), “Predictors of patient satisfaction”, Social Science and Medicine, Vol. 52 No. 4, pp. 609-620. Koekkoek, B., Hutschemaekers, G., van Meijel, B. and Schene, A. (2011), “How do patients come to be seen as ‘difficult’?: A mixed-methods study in community mental health care”, Social Science & Medicine, Vol. 72 No. 4, pp. 504-512. Leonard, M., Graham, S. and Bonacum, D. (2004), “The human factor: the critical importance of effective teamwork and communication in providing safe care”, BMJ Quality & Safety, Vol. 13 No. S1, pp. 85-90. Lincoln, Y.S. and Guba, E.G. (1985), Naturalistic Inquiry, Sage Publications Ltd., Thousand Oaks, CA. McCabe, C. (2004), “Nurse-patient communication: an exploration of patients’ experiences”, Journal of Clinical Nursing, Vol. 13 No. 1, pp. 41-49.
Manary, M.P., Boulding, W., Staelin, R. and Glickman, S.W. (2013), “The patient experience and health outcomes”, New England Journal of Medicine, Vol. 368 No. 3, pp. 201-203. Morath, J. and Leary, M. (2004), “Creating safe spaces in organizations to talk about safety”, Nursing Economics, Vol. 22 No. 6, pp. 344-351. Patak, L., Wilson-Stronks, A., Costello, J., Kleinpell, R.M., Henneman, E.A., Person, C. and Happ, M.B. (2010), “Improving patient-provider communication: a call to action”, Journal of Nursing Administration, Vol. 39 No. 9, pp. 372-376.
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Patterson, E.S. and Wears, R.L. (2010), “Patient handoffs: standardized and reliable measurement tools remain elusive”, Joint Commission Journal on Quality and Patient Safety, Vol. 36 No. 2, pp. 52-61. Peters, S., Rogers, A., Salmon, P., Gask, L., Towey, M., Clifford, M., Dowrick, C. and Morris, R. (2009), “What do patients choose to tell their doctors? Qualitative analysis of potential barriers for managing unexplained symptoms”, Journal of General Internal Medicine, Vol. 24 No. 4, pp. 443-449. Sammer, C.E., Lykens, K., Singh, K.P., Mains, D.A. and Lackan, N.A. (2010), “What is patient safety culture? A review of the literature”, Journal of Nursing Scholarship, Vol. 42 No. 2, pp. 156-165. Solet, D.J., Norvell, J.M., Rutan, G.H. and Frankel, R.M. (2005), “Lost in translation: challenges and opportunities in physician-to-physician communication during patient handoffs”, Academic Medicine, Vol. 80 No. 12, pp. 1094-1099. Thórarinsdóttir, K. and Kristjánsson, K. (2014), “Patients’ perspectives on person-centered participation in healthcare: a framework analysis”, Nursing Ethics, Vol. 21 No. 2, pp. 129-147. (The Appendix follows overleaf.)
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Demographics
Female
Male
Female
Female
Female
T.S.
B.W.
M.M.
S.R.
J.B.D.
Table AI. Interview participant information
Participant initials
Daughter
Mother
Mother
Son-in-law
(continued )
After over a year of cold-like symptoms, the patient strongly felt there was something else wrong and booked a chest X-ray. The doctor determined that the patient was in heart failure. Patient was able to recover from heart failure and was prescribed medication to regulate her ejection fraction. Because the medication was causing her constant fatigue, her regular doctor began reducing her dosage. When the patient went back to the cardiologist, it was found that her ejection fraction had drastically dropped again because of the reduction in medication Interview participant’s mother-in-law had been recovering from cancer in a geriatric ward. She was a very active person before and throughout the recovery, but one day when her family had come to visit, she was comatose in her hospital bed. A nurse explained that this was normal because of her age and low blood pressure. A few weeks later another nurse admitted that the mother-in-law had been given the wrong medication, which is what triggered the comatose reaction Interview participant’s young daughter passed away and her death was ruled as “natural causes.” The daughter had many health ailments throughout her life including bipolar disorder as well as low potassium levels. Although it was recommended in her file that she should not be prescribed lithium because of the potassium deficiency, the next psychiatrist that took over prescribed it anyways. The risks were not made clear to her and she began to experience rapid heartbeats. Cardio checkups were done but the doctor failed to inform the girl of the results therefore she kept taking the lithium and eventually died Interview participant’s daughter passed away at 7 months old. She suffered from an intracranial hemorrhage and was taken off life support four days later in the hospital. Her daughter also had ITP (idiopathic thrombocytopenic purpura – bleeding from an unknown source). When the mother asked for the resident to visit her baby before her death, the staff on call would not do this for her, they insisted she was experiencing gastro pain. After almost an entire night, the child ended up dying from the intracranial hemorrhage Interview participant’s father had a bad cough and daughter recognized this as a symptom of atrial fibrillation. A week after her father returned home from the hospital, he had a stroke. He was also found to have malignant nodules in his rectum and had to have them surgically removed. After this surgery, his condition began to deteriorate quickly. Soon after he had a heart attack and became comatose. His family decided to discontinue therapy and have been advocating for practicing patient-centered care
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Patient
Relation to patient
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IJHCQA 28,6 Appendix
R.M.
C.K.
J.T.
A.F.
D.D.
T.M.
Participant initials
Relation to patient
Patient
Mother
Daughter
Daughter-inlaw
Daughter and friend
Mother
Demographics
Female
Female
Female
Female
Female
Female
Patient had a miscarriage two weeks before the fetus is considered to be a “human baby” and therefore was kept in emergency. Her doctor did not show up until several hours after the ordeal. Patient was given no IV fluids, there was no assistance in cleaning up after the miscarriage. The baby died because of a knot in the umbilical cord Interview participant’s son had been involved in bad car accident and sustained a head injury. Health care staff seemed to be disrespectful during his time of care, offending the mother and father on a few separate occasions. As his condition worsened, he became unusually aggressive and violent. The mother reported this to the health care team but they explained this was normal. He was sent in for more CT scans and was passed between doctors. Eventually it was revealed that their son was brain dead Patient began to develop abdominal swelling and shortness of breath after sustaining a stroke, among other kidney and heart problems. After having more CAT scans, it was determined she had fluid buildup in her lungs. Her mother was very weak at this point and her daughter was holding her up during these scans. Another CAT scan was done while the daughter was not there and her mother fell between the gurney and the wall. She was immediately taken to the emergency ward. The patient ended up passing away shortly after that Her mother-in-law (Fervid) became sick with the flu and became very dehydrated. She was taken into the hospital and given fluids then was allowed to go home yet the symptoms kept persisting. Her cognitive abilities began declining quickly. It was found that her medications were producing an adverse drug reaction. Her medication was changed and within 6 weeks Fervid was back to her normal cognitive functioning but was stuck in bed as the adverse drug reaction caused a lot of muscle deterioration to the point where Fervid required a wheelchair. Fervid passed away a few years later from complications of a reoccurring bacterial infection Interview participant’s father and close friend both passed away at home but had two very different experiences. Her father died several years ago when home care was still in its infancy therefore his care was not the best. He was in a lot of pain as they would not prescribe him much pain medication and he was mostly being taken care of by his family but they did not really know how. Participant’s friend also passed away in her own home but this was years later and a completely different experience. She was well taken care of and was able to decide when she wanted to pass Participant’s daughter passed away at the age of 9. She was born with a genetic abnormality (Trisomy 13). She passed away following surgery on her skull. Her mother requested a review as she did not think her daughter was properly cared for during the surgery. It was found that her death was preventable
Synopsis
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Table AI.
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About the authors Dr Andrea C. Bishop, PhD, is a Postdoctoral Fellow at the Dalhousie University, Halifax, Nova Scotia, Canada. Andrea’s current research is aimed at exploring patient engagement and safety during transitions in care. Dr Andrea C. Bishop is the corresponding author and can be contacted at: [email protected] Brianna R. Cregan, BA, is a Psychology/Human Resource Student at the Saint Mary’s University, Halifax, Nova Scotia, Canada. Brianna’s research interests include occupational safety and health, minimizing safety hazards at work and the creation of safety training programs.
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