Patients' experience of patient safety information and participation in care during a hospital stay
Abstract
Aim
Having a culture of safety is crucial when providing high-quality health care, yet preventable adverse events are common in the Swedish healthcare system, especially in the field of surgical care. Research shows that patient participation can improve patient safety. This study aimed to explore patients' experience of the safety leaflet, “Your safety in hospital,” including participation in care and feelings of safe care.
Design
This study uses a descriptive qualitative study design.
Methods
Twenty patients from surgical wards received patient safety leaflets and participated in semi-structured interviews during their hospital stay. Data were analysed using qualitative content analysis.
Results
Three categories emerged from the analysis: Positive and negative experiences of provided information, Experiences of participation in own care, and Feelings of being safe arising from a perception of good quality care. Most participants were satisfied with their participation in their care and felt safe during their hospital stay. Oral information about the safety leaflet from healthcare personnel was lacking.
1 INTRODUCTION
Preventable adverse events (AE) are a common global problem within all healthcare systems, and the healthcare system in Sweden is no exception. In Sweden, over 110.000 patients per year are affected by an AE of varying severity, and many of these injuries occur within surgical care settings. These avoidable injuries lead to suffering for the patient and their relatives and constitute a large cost for the healthcare system (Wigzell, 2020). Work on improving patient safety is therefore a high priority in the healthcare sector, and it is also governed by the Patient Safety Act (2010:659). In addition, there is an increased global interest in involving patients in such work, as it has been shown that patient involvement improves quality of care (Park & Giap, 2020). Therefore, it is important that healthcare professionals have knowledge on how to achieve patient participation, for example understanding the importance of informing and encouraging patients (and relatives when possible) continuously during their hospital stay on how they can participate in their own care. At Sahlgrenska University hospital in Sweden, the patient safety leaflet, “Your safety in hospital,” was implemented in 2017 as a supplement to oral information provided by healthcare professionals, with the aim to decrease preventable AE during inpatient care. Patient perception of the leaflets as well as their experiences of participation can provide new insights into how we can further improve patient safety during hospital stays.
2 BACKGROUND
Health care is a complex system, and errors and AE are well known in all healthcare settings. According to the World Health Organization (WHO), every tenth patient in Europe experience a preventable harm or AE during their hospital stay (WHO, 2020). Up to 15% of the Organization for Economic Co-operation and Development (OECD) countries' total hospital expenditures are due to AE, where blood clots, pressure ulcers and infections are the most burdensome (WHO, 2019). Research has shown that many of these injuries and AE could have been avoided (Nilsson et al., 2016; Schwendimann et al., 2018). In Sweden, a preventable harm is defined in the Patient Safety Act (2010:659) as, “suffering of bodily or mental injury or illness as well as death that could have been avoided if adequate measures had been taken in the patient's contact with health care” (SFS, 2010). In a Swedish review of surgical care, AE were identified in 15.4% of all patients studied and 62.5% of these were classified as preventable or probably preventable. Hospital-acquired infections were the most common AE, while urinary retention, pressure ulcers and falls were other examples. Patients with “probably preventable” AE had seven-day longer median hospital stays than patients without AE (Nilsson et al., 2016). Furthermore, being a patient and suffering from medical harm can result in both physical and psychosocial problems for the patient (Joelsson-Alm et al., 2014), financial hardship as well as loss of the patient's trust in the healthcare system and its providers (Southwick et al., 2015). An AE can additionally limit the patient's independence and autonomy due to resulting physical problems and an increased need for care (Hassel et al., 2016).
Research has shown that patient participation in their care has an important role in increasing patient safety in connection with hospital care (Park & Giap, 2020). In a recent review, it was concluded that patient are generally positive regarding engaging in their care and thereby improving overall patient safety. However, the review also concluded that gaps and barriers for patient engagement still exist (Park & Giap, 2020). The extent of patient safety involvement is influenced by several factors and personal characteristics such as health status, age, gender and motivation (Sahlström et al., 2016; Vaismoradi et al., 2015). Patients who have sufficient knowledge and are informed about patient safety are also more eager to participate in patient safety work (Vaismoradi et al., 2015).
It is the healthcare providers' responsibility to create an organizational environment and culture that enables the patient to participate in patient safety work (Wigzell, 2020). According to a concept analysis of patient participation, four attributes were identified as key factors for achieving patient participation: (1) an established relationship between the patient and nurse, (2) a rearrangement of power and control between patients and nurses, (3) meaningful sharing of information and (4) an active engagement from both parties (Sahlsten et al., 2008). Healthcare personnel also have a crucial role through education and support in promoting patient participation in issues related to patient safety (Davis et al., 2007), where nurses' knowledge, attitudes, encouragement and support affect patients' ability to participate (Vaismoradi et al., 2015). The healthcare system can employ various interventions to increase patient safety-relevant behaviours, for example patient information brochures, posters, videos and boards that inform patients and their relatives about how they can contribute to safer care for themselves.
Worldwide patient participation in their own care has been suggested as a strategy to reduce healthcare costs and medical errors, as well as improve patient satisfaction (Mavis et al., 2015; Wigzell, 2020). Therefore, there is interest both in Sweden and internationally, about how patient participation can be continuously improved and thereby promote safer care (Ringdal et al., 2017; Sahlström et al., 2016). This paper investigates patient perception of a patient safety intervention, using the leaflet, “Your safety in hospital,” from three perspectives: (1) information about the leaflet and patient safety, (2) participation in care and (3) feelings of being safe during the hospital stay.
3 METHODS
3.1 Design
This study utilized a qualitative descriptive approach, with patients participating in individual semi-structured interviews on one occasion.
3.2 Participants
Strategic selection was used to obtain as heterogeneous a selection as possible with regard to age, gender and length of hospital stay (Polit & Beck, 2017). Three surgical wards at a university hospital in sweden were identified to participate in this study (Upper Gastrointestinal surgery, Acute surgery and Colorectal surgery). Potential patient participants were then identified with help from nurses at the included wards. Thereafter, patients were given oral and written information about the study by two of the authors PL and AZK. Both PL and AZK are nurses working at two of the included wards, but at the time of participant inclusion and interview, neither author had any caring relationship with any participants. Altogether, 23 patients who fulfilled the inclusion criteria (see below) were asked to participate and 20 agreed.
- Have received the written patient safety leaflet, “Your safety in hospital,” in connection with their hospital stay
- 18 years or older
- Able to speak and understand Swedish
- Cognitive ability to understand oral and written information about the study and participate in the interview.
3.3 Patient safety leaflet, “Your safety in hospital”
The patient safety leaflet, “Your safety in hospital,” was developed as a written supplement to oral information at Guy's and St Thomas’ NHS Foundation Trust (London, United Kingdom). The leaflet was translated into Swedish (with permission) first for use within the county of Skåne, then introduced in March 2017 to all adult somatic care units at Sahlgrenska University Hospital. The information sheet consists of eight illustrative pictures with accompanying easy-to-understand text explaining ways in which the patient can avoid AEs, for example healthcare-associated infections, falls, pressure wound, malnutrition and medication errors. Regarding the three surgical wards where study participants were recruited, oral training about the patient safety leaflet was provided to healthcare personnel as part of one workplace meeting. Staff were instructed that at the time of ward admission, all patients would be provided with this written information and encouraged to participate in this activity. Over time, the frequency and method of leflet use by healthcare personnel has varied.
3.4 Data collection
All semi-structured interviews were conducted between April and August 2019 by two of the authors PL and AZK. An open-ended broad topic guide served as a script to ensure that all participants received the same questions (Polit & Beck, 2017). Two pilot interviews were conducted to ensure that the questions in the interview guide addressed the study aims; thereafter, an additional question was added to the topic guide (Supplementary File S2). Both pilot interviews were included as they largely responded well to the purpose of the study and the modification made was of a minor nature. All interviews, which took place at the time of each participant's discharge from hospital, were recorded, transcribed verbatim and coded to ensure the confidentiality of the participants.
3.5 Data analysis
- The transcribed text was read several times to achieve a feeling for its content.
- Meaning units including the contents manifested were identified. Meaning units can be a few words, sentences or paragraphs in a text that relate to each other in context and or content.
- Meaning units were condensed to shorter paragraphs without losing their content.
- Condensed meaning units were coded.
- Identified codes were grouped together into subcategories, which in turn were organized into categories.
Examples of how the content analysis proceeded are presented in Table 1.
Meaning unit | Condensed meaning unit | Code | Subcategory | Category |
---|---|---|---|---|
“It just lay on the table [the leaflet]. And most people who are here, they are quite newly operated, or quite unaware, and at that time the information is not very relevant. I can say that I look into it when I have recovered. […]. Nobody will just ‘get it in to his or her head’ like that, that information directly. It comes gradually, - have you looked at this - no, okay but then I will look into it.” | “It just lay on the table. And most people who are here, they are quite newly operated, or quite unaware, and at that time the information is not very relevant. I can say that I will look into it when I have recovered. |
Information about the leaflet Being too affected to be able to grasp the information Experience that the information on the leaflet is not relevant to one's self |
Lack of information concerning the leaflet | Positive and negative experiences of provided information |
“That's a bit of a difficult question, yes. Because… you just get to bide your time and then you will be pain free in the beginning so that you can start to move more. So that, you can't be very much involved.” | … be pain free in the beginning so that you can start to move more. So that, you can't be very much involved. | Too much pain to be able to participate | Barriers for participation | Experiences of participation in own care |
“Yes. Well, they [the staff] work with me anyway. They keep ongoing and they do what they can. There are a lot of people and patients and so on. But I think they are in control of the situation. And it feels safe.” | Well, they work with me anyway. They keep ongoing and they do what they can. […] They are in control of the situation and it feels safe. |
Confidence in staff doing what they can. Staff are in control of the situation |
Experience good quality care | Feelings of being safe arising from a perception of good quality care |
3.6 Ethics
The Regional Ethical Review Board in Gothenburg approved the study (Dnr 267–18) and informed consent was obtained from participants prior to the interviews.
4 RESULTS
Eleven female and 9 male patients participated in the study. The mean age was 64 years (range: 51–82). The mean hospital stay at time of interview was 9 days (range: 2–26). Mean interview time was 14.08 min (range: 8.18–22.30).
Three categories emerged from the data: Positive and negative experiences of provided information, experiences of participation in own care and feelings of being safe arising from a perception of good quality care. These categories originated from nine subcategories; see Table 2 for a summary of categories and subcategories.
Positive and negative experiences of provided information | Experiences of participation in own care | Feelings of being safe arising from a perception of good quality care |
---|---|---|
Good experiences of being informed about overall care | The meaning of participation | Experience good quality care |
Lack of information concerning the leaflet | The meaning of participation in relation to safe care | Being informed contributes to feeling safe |
Variations in healthcare personnel information on how to obtain safe care | Barriers for participation | |
Importance of participating relatives |
4.1 Positive and negative experiences of provided information
4.1.1 Good experiences of being informed about overall care
Well, during this particular care time, I think I have received good information from them in the care team both when I was having surgery and when sitting down … (Participant 19).
4.1.2 Lack of information concerning the leaflet
No, I picked one from the table, a general table, yes it doesn’t matter. Thought I might read it later, but I was tired then. But no one has said a word about it. (Participant 1).
I think the first time I saw it, it lay crumpled on my bedside table. And it was natural to take it up and read it. (Participant 10).
Of course I read it. But it's like on a flight, that you need someone who shows or talks you through the piece of paper. (Participant 17).
… Here we have a leaflet that we very much want you to read, so that I can ask questions at that stage. (Participant 14).
It seems to be aimed at older and weaker people than me. (Participant 20).
Variations in healthcare personnel information on how to obtain safe care.
… There was a lot of information about not slipping and falling and taking it carefully. (Participant 3)
Hmm… being up and moving around as much as possible. I have asked if I can return to running and strength training and it should not be a problem. I haven’t received any other advice on how to prevent injuries or anything like that, no I don’t think so. (Participant 20).
4.2 Experiences of participating in own care
4.2.1 The meaning of participation
… I think patient participation is, it's like, I know what's going to happen. I think, this is your [care] plan and this is what we will do for you. So I’m as aware of everything that will happen. (Participant 7).
That I will know what will happen to me so I will be able to determine what should be done. And that nothing will be decided over my head. (Participant 6).
Well, I probably have high expectations of being involved in terms of information and decisions because it is my body […] it has been natural for me to take part in medical records and decisions all the way. (Participant 3).
4.2.2 The meaning of participation in relation to safe care
Participation is that I walk, to move around. Get the circulation going, as much as I can. (Participant 1)
Well, I did get this blowing device [a small hand-held breathing exercise device], I tried it. (Participant 3).
… What is interesting to me is the result. And can I somehow contribute to a better result I will do it with full force […] It is only I who can run my body. So it is. And that I want, with such information, I also have the opportunity to do what only I can do. (Participant 10).
I think it's important that there is an interaction. And I also read in my folders when I arrived here that a large part of health care is that you as a patient are involved in the care team's work […] be aware as much as you can and be helpful. (Participant 20).
I have not really thought in those ways really, that it is safer care, no not really like that, maybe I just don’t have this way of thinking in me.
(Participant 6).
I haven’t really thought about that because I feel very safe here. If there is something wrong, they will certainly take care of it as well. (Participant 13).
4.2.3 Barriers for participation
I didn’t get the leaflet or I might have gotten it although I didn’t read it, because I was so ill when I arrived. (Participant 12).
I can actually do quite a lot myself. The question is, well, I just haven’t had the power to do it. (Participant 8).
Well, firstly I don’t think that I myself should be involved, the only thing I want is to get healthy and get home. (Participant 17).
Well I think it's hard to participate when you don’t get information.
(Participant 17).
4.2.4 Importance of participating relatives
Before surgery or afterwards, you are not always thinking about it yourself, so it is very important I think to have a relative with you, because you forget about half the questions, then he will remember them instead. Trying to talk things through at home before, what we will ask and so, still it is very much forgotten when you arrive. So it always is, I should have asked it but now he does it, so that is why I think it is good. (Participant 16).
My mother and my colleague and friend, then, who also had cancer. And mom has had cancer. So the two of them know what to… so they help me when we sit in a conversation, because they know and can. (Participant 4).
I’m at a specialized hospital now, far from home so it's not so easy for my relatives to just leave. (Participant 8).
Then friends have been here and my children have been here and so I feel very, well, it feels like I’m included in a context like that. […] It's very nice, I would have felt very lonely otherwise. (Participant 17).
4.3 Feeling safe arises from a perception of good quality care
4.3.1 Experience good quality care
So it is, and when there are routines, that you don’t neglect and instead follow, then I feel safe. […] And people with knowledge follow the routines and are not careless. (Participant 10).
They took care of me, they knew what they were doing. (Participant 2).
Oh, that they turn up just to take a look at you and keep an eye you, asking how you feel. And help you with different things that you might not be able to do. (Participant 5).
Again, the personnel. They do a fantastic job and they arrange, provide and support you and push you and, so I feel safe when I’m here. Do not feel unsafe at all. (Participant 12).
4.3.2 Being informed contributes to feeling safe
Yes, it's, that they are listening and asking question, and you feel that you are seen and heard. That's probably the most important thing. (Participant 6).
5 DISCUSSION
Overall, patients were satisfied when describing their experience of information about their overall care and they viewed receiving information (such as surgery outcome and care plans) as participating in their own care. Almost all participants said that they expected to be involved in their care and that it was important to them. Being well informed about ongoing care and treatment was described as the major component in patient participation, findings that also have been described by others (Larnebratt et al., 2019). In contrast, relatively few patients described the meaning of being involved in their care from a broader perspective, although some expressed involvement to a greater extent, for example when it came to being involved in decision-making about further care. These results are interesting because they show that participation as a concept can have different meanings and that the expectation of participation can differ between patients, healthcare personnel and policymakers. For example, in the May 2020 European Standard, Patient involvement in health care – Minimum requirements for person-centred care, it is stated that shared decision-making is a key factor in patient involvement and when building a partnership with the patient. It is further written that healthcare personnel should provide favourable conditions to establish this partnership (SiS, 2020). Based on the patients' narratives, it became clear that there was a lack of communication between healthcare personnel and the patients regarding the safety leaflet. The information material in most cases was lying on the bedside table without a verbal introduction by the personnel. Some patients reported that several days had passed before they read it. Participants explained that, in addition to the leaflet, they also wanted verbal information from the personnel, including an opportunity to discuss and ask questions about participation to reduce the risk for AE. This indicates that health professionals, such as registered nurses and nursing assistants, failed to involve patients fully in this patient safety work.
Why information from healthcare personnel varied and sometimes was lacking is not investigated in this study, but one possible explanation may have been some organizational ambiguity in connection with the introduction and ongoing work with the patient safety leaflet at the wards. Inadequate organizational structure and its negative effect on safety culture have previously been reported by Farokhzadian et al. (2018). In their qualitative interview study with 23 nurses, they found that lack of knowledge and ability in care management, lack of time, poor communication with team members and insufficient efforts for improving professional competence can be barriers for implementation of safety improvement strategies. Lack of competence, influence of significant others as well as organization and work environment were described hindrances for patient participation already in 2005, by Sahlsten, Larsson, Plos and Lindencrona. The authors suggested that in order to increase this knowledge and to best support the patient's ability and willingness to participate, nurses needed organizational and collegial support as well as time for reflection and that more experienced nurses needed to support more novice nurses or nursing students regarding patient participation.
For those who received information about how to avoid AE according to the patient safety leaflet, the extent to which the information was individualized for the participant's specific needs and resources varied. For example, having pain and fatigue were described as barriers to participation and patients in such situations experienced an uncertainty as to how they could be involved, being so affected by their condition particularly in the beginning of their care episode. This indicates that the information may not have been sufficiently individualized, which further highlights the importance of nurses having the time, willingness and competence to provide adapted information to each patient continuously under the care period. If a patient at one point is unable or unwilling to receive information about participation, his or her ability and willingness to be engaged in their safety might change over time (Burrows Walters & Duthie, 2017). One way of overcoming barriers, such as lack of participation, is a genuine partnership with the patients. This also shows that, although patient participation in patient safety work is a priority for health care, it is not a central part of the work in the care departments. Similar results have been found by Martin et al. (2013), whose study demonstrated that patient participation in patient safety work did not appear in the daily clinical work and there was a lack of a systematic approach towards patient involvement in their own safety.
Another aspect that emerged was that most participants stated that even though they performed several activities in the leaflet, for example being active and taking measures to avoid falls, they had not reflected on these activities as being part of participating in a safer care environment. Patient safety as a concept and action was something with which patients were not familiar, a phenomenon that also has been described by others (Burrows Walters & Duthie, 2017; Martin et al., 2013). Not being aware of the role of these important actions in avoiding AE, might reduce patient motivation and involvement in their own care and thus also patient safety.
5.1 Limitations
The four aspects of trustworthiness in qualitative research, credibility, dependability, conformability and transferability (Elo et al., 2014) have been pursued in this study. However, one limitation is that data can never be coded completely independently of the researcher's preconceptions, but we have strived to credibility through a continuous dialogue between the authors during the data collection and analysis process. Some interviews were quite short; therefore, we continued to include patients even though saturation was perceived. To achieve conformability, we present many quotations herein. Furthermore, through a clear and transparent description of the analysis process and of our results, we hope that the reader's assessment of transferability to other contexts is favourable.
6 CONCLUSION
Many patients experienced that the verbal information about the patient safety leaflet was limited. Nonetheless, participants described performing several of the activities defined in the leaflet, despite having not received oral information nor the opportunity to ask questions. This indicates that this accessible leaflet is a valuable tool for providing information on this topic. However, the structure of the information transfer between patients and healthcare professionals could be further improved to optimize its usefulness. Although the results revealed several factors that hinder the patients' ability to participate in the safety work, most participants were satisfied with their participation during the care period and did not have a desire to be further involved. Still, we believe that the ongoing implementation of a person-centred care in Sweden can contribute to an even higher level of patient participation and thus a safer care environment. Moreover, participants also stated that they felt safe and secure during their hospital stay, which indicates that the lack of communication regarding participation and patient safety did not negatively affect their experience of safety.
AUTHOR CONTRIBUTIONS
BT, CF and ME: Idea for the study. AZK and PL: Data collection. AZK, PL and ME: data analysis, interpretation and formulation of the manuscript. Finally, all authors (BT, CF, AZK, PL and ME) revised the manuscript and approved the final version and contributed to the design and concept.
FUNDING INFORMATION
This research did not receive any specific grant from funding agencies in the public, commercial or not-for-profit sectors.
CONFLICT OF INTEREST
None.
Open Research
DATA AVAILABILITY STATEMENT
Data available on request due to privacy/ethical restrictions