Scand J Caring Sci. 2021;00:1–10. wileyonlinelibrary.com/journal/scs
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1E M P I R I C A L S T U D I E S
A sense of being rejected: Patients’ lived experiences of cancelled knee or hip replacement surgery
Ulla Caesar RN, PhD
1,2,3| Elisabeth Hansson- Olofsson RN, PhD
3,4| Jon Karlsson MD, PhD
2,3|
Lars- Eric Olsson RN, PhD
3,4| Eva Lidén RN, PhD
4This is an open access article under the terms of the Creative Commons Attribution- NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
© 2021 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.
1Faculty of Caring Science, Work Life and Social Welfare, University of Boras, Boras, Sweden
2Department of Orthopaedics, Sahlgrenska Academy, Institute of Clinical Sciences, University of Gothenburg, Gothenburg, Sweden
3Department of Orthopaedics Gothenburg, Sahlgrenska University Hospital, Gothenburg, Sweden
4Sahlgrenska Academy, Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden Correspondence
Ulla Caesar, Department of Orthopaedics, Sahlgrenska Academy, Institute of Clinical Sciences, University of Gothenburg, Gothenburg 413 45 Sweden.
Email: ulla.caesar@gu.se Funding information
The study was financed by grants from the Swedish state under the agreement between the Swedish government and the county councils, the ALF agreement:
ALFGBG 432511.
Abstract
Background: Growing care queues, reduced access to care and cancelled surgery are realities for some patients being treated with total hip or knee replacement surgery in Sweden.
Most of the patients on the waiting lists have experienced pain and limited motion for a varying period of time, with a negative effect on their everyday lives. Overbooked surgi- cal schedules are already contributing to the lengthy waiting times, but, with the addition of cancellations, longer waiting times will increase still further and may affect patients’
well- being.
Methods: In the present study, we aimed to illuminate the experience of having planned surgery cancelled, based on narratives from 10 participants. The interview transcriptions were analysed using a phenomenological hermeneutic approach.
Results: The comprehensive analyses revealed that the participants described the agony of being deselected and the additional impression of being excluded. Metaphors of being damaged and feeling physical pain were used and the interpretations referred to the can- cellations as unpleasant. Additionally, the important relationship and the trust between the health workers and the patient were negatively affected by the cancellation.
Conclusion: After the cancellation, the participants expressed being vulnerable and from their perspective the cancelled surgery affected them deeply; in fact, much more than the healthcare workers appeared to understand. Therefore, information around the cancella- tion must be given respectfully and with dignity, in a dialogue between the patient and the healthcare workers. Taken together, to enable an opportunity to be involved in the continued care. The cancellations should be seen as an interruption, in which the patients’
chance of living a pain- free, active life is postponed.
K E Y W O R D S
arthroplasty, cancelled surgery, lived experiences, orthopaedic surgery, phenomenological hermeneutic, qualitative interviews, social rejection, suffering to care
INTRODUCTION
Extended waiting times and delayed and/or cancelled surgery are reality for many people who require orthopaedic surgery in Sweden [1]. Two frequent, much needed and commonly performed orthopaedic procedures are total hip replacements (THRs) and total knee replacements (TKRs) [2- 5], both con- tributing to long waiting lists. Taken as a whole, they are the result of an ageing population, successful treatment methods and a publicly funded healthcare system, along with an over- all high demand for orthopaedic surgery [4, 6]. These factors all contribute to a variety of consequences at both individual and organisational levels.
In Sweden, approximately 17 000 primary total hip re- placements (THR) and almost 14 000 primary total knee re- placements (TKR) were registered in 2016 [1, 2]. The Swedish healthcare guarantee [7] gives all inhabitants the right to re- ceive specialist treatment within 90 days. This means that peo- ple have to wait for a maximum of 90 days for an appointment for any type of surgery, following the decision to perform sur- gery. Even if there is a maximum waiting time of 90 days, according to the care guarantee, a number of patients have to wait longer for various reasons. In December 2017, 4265 pa- tients in Sweden were on waiting lists for TKR surgery, of whom 21% had waited >90 days, while 3,491 patients were on waiting lists for THR, of whom 15% had waited >90 days [5].
Most of the patients on the waiting list for THRs and TKRs have experienced pain and limited motion for some time period, which has a negative effect on their everyday life [8]. One of the individual outcomes, when surgery is the pre- ferred treatment, is that the decision to undergo hip or knee replacement surgery starts with the expectation of becoming pain- free after surgery and thereby being able to live a more normal, pain- free life [9- 11].
The individuals’ activities of daily living might also be negatively affected by extended waiting times. For example, Sjöling et al. [12] reported that increased waiting times for THRs or TKRs made patients feel powerless, as they expe- rienced significant uncertainty, not knowing when or if their quality of life would be improved.
Studies have shown that, when patients participate in their own care, cancellation rates are reduced, and patient satis- faction with healthcare outcomes is improved. The studies by Hovlid et al. [13, 14] report that the cancellation rates for elective orthopaedic surgery were reduced by involving the patients in the scheduling by choosing a time that suited their needs and requirements. Moreover, Vahdat et al. [15]
revealed the benefits of patient participation related to the decision- making in health care; with increased patient trust and satisfaction, providing enhanced quality of life and an understanding of personal requirements for taking part in the care. Moreover, giving the patients opportunities to share their view of health care created chances for the provider to
develop even better- adapted health care [15]. If patient par- ticipation is found to be an important factor for the outcome, it is valuable for the care provider to understand how this involvement can be realised [16, 17].
On an organisational level, overbooked surgical schedules contribute to the prolonged waiting time. With the addition of cancellations, long waiting times will increase still further [18, 19]. Caesar et al. [19] stated that cancellations of THRs and TKRs were surprisingly common and that as many as 41% of planned orthopaedic operations were cancelled or rescheduled.
Several studies have indicated that the cancellation of a surgical procedure is often a major problem in health care [12- 14, 16- 21]. However, there is still no research focussing on the patients’ views and their lived experiences of having TKR and THR surgery cancelled [20- 22]. Based on this gap in literature, it appears important to interpret the patients’ view of cancelled hip or knee replacement surgery. Consequently, this was the purpose of the current research.
METHOD
The aim of the study was to elucidate the meaning of being cancelled from planned replacement surgery from the pa- tients’ perspective. For this reason, the patients’ narratives became the starting point, to understand their experience of cancelled surgery. Accordingly, the present study used a qualitative design with a phenomenological hermeneutic method developed by Lindseth et al. [23] The method inter- prets interview texts inspired by the theory of interpretation presented by Paul Ricoeur [24, 25].
Settings
The included patients were on the waiting list for either a THR or a TKR, at a university hospital in Gothenburg, Sweden. The participants remained on the list until a possible reservation for surgery was available. The waiting time was approximately two to three months, sometimes even longer.
When a cancellation was necessary, the surgeon prioritised the patients and decided which operation to cancel. If the pa- tients were still at home, the co- ordinators would call them to inform them about the cancellation. If the hospital did not reach the participants directly, news of the cancellation was sometimes left on an answering machine or relayed via a family member. When the patient was already in hospital and had prepared for surgery by fasting and other preoperative procedures, the surgeon, ward staff or the operating room (OR) staff informed him/her that surgery had been cancelled.
In some cases, a new appointment was given immediately,
but several participants had to wait one to two weeks before
receiving their new surgery time.
Participants
The participants were identified through purposeful selection.
The clinic co- ordinator gave the patient contact information to the first author, who in turn called the patient and asked whether he/she would be willing to participate. The purpose was to find a sample by including men and women of all ages, patients both working and retired. Participants who met the following inclusion criteria were invited to participate in this study: (1) being on the hospital waiting list and assigned to either a THR or a TKR procedure; (2) Swedish speaking;
(3) having had their operation cancelled; and (4) being in the period between the cancellation and the new surgery appoint- ment. This period varied in time and lasted from one week to two months. The participants (n = 10) comprised six women and four men, aged 40- 80 years. Five were employed and five had retired. Four participants were cancelled for a THR and six for a TKR.
Data collection
Data were collected from interviews at locations chosen by the participants: a secluded room at the hospital (n = 3), a clinic ward (n = 3), a patient's office (n = 1) or the partici- pant's home (n = 3). A brief presentation of the participants, the researcher and the current research project was made be- fore the interviews.
The interviews started with an open request: ‘Please tell me about the day when you received the message that your surgery had been cancelled’. The participants were then asked to describe how they felt when they received the message and their reactions to the cancellation. Follow- up questions were used to obtain more information about the participants’ ex- perience. In the interviews, the obligation was to meet the participants with respect and listen to their narratives. The interviews were between 25 and 105 minutes in length, and they were all transcribed.
The first interview was reflected on and discussed by all the authors to ensure that the method worked and the meaning of having surgery cancelled was captured. The interviewer made a summary at the end of each interview, so the partici- pants could determine whether it was a correct and meaning- ful representation of how they felt and what they had said. In some interviews, the summary added information relating to the cancellation and adjustments.
Data analysis
The interpretation was performed in three steps, as described by Lindseth et al. [23] First, the text was read several times to obtain a sense of what the participants said, leading to a naïve
understanding of the text as whole. Second, the structural analy- sis started with a critical distance in order to validate or reject the naive understanding. In this step, the intention was to describe,
‘What the text said’. The emphasis was placed on the text, as it was taken out of context. Meaning units were condensed, coded and finally grouped into themes (see Table 1). The structural analysis was repeated several times over a long period. These reflections led to a re- evaluation of the naïve understanding, and analysis was carried out until agreement was reached between the naïve understanding and the structural analysis.
Finally, the naïve understanding and the structural anal- ysis were reflected on theoretically and critically in order to open up a new and deeper comprehension of ‘what the text was talking about’. During this step, all the authors contrib- uted by applying their personal, professional and scientific experience to the text. This helped the interpretation to be both critical and innovative.
A preliminary version of the result was presented as a part of a dissertation [26]. However, in line with the hermeneutic approach, the analysis was further deepened resulting in this final version.
Ethical considerations
The Regional Ethical Committee Review Board approved the study (Dnr: 531- 12).
RESULTS
The preliminary reading of the four initial interviews re- vealed that all the participants responded with a sense of con- fusion and feelings of injustice after the cancellation. Data collection continued for an additional six interviews and the participants expressed similar feelings.
Naïve understanding
The meaning of having knee or hip replacement surgery cancelled appeared to be a question of falling into a state of strong feelings and ending up in an awkward and unrealistic situation. It appeared that the participants’ view of becoming well and reclaiming an ordinary life disappeared. Instead of a much- wished- for recovery, to which the operation would lead, feelings of hopelessness and abandonment appeared.
This also gives the impression that the participants felt de-
serted and lonely. The waiting time before the new appoint-
ment was both long and difficult and appeared to offer no
opportunities to influence the situation. The lack of informa-
tion made the participants question whether the hospital's pri-
oritisation was done correctly.
Themes
The descriptions and texts of the themes are illustrated by quotations, and the participant (P, no) and number repre- sent the participants # 1- 10. The findings from the struc- tural analysis produced four themes: (1) ending up in two aspects of reality, (2) being exposed to an injustice and its unpleasant consequences, (3) being a pawn in a game (4) and being surprised by one's reactions and feelings.
The descriptions and texts of the themes are illustrated by quotations.
Ending up in two aspects of reality
The participants stated that the cancellation was unexpected and very stressful. In the participants’ inner reality, no al- ternative other than their surgery being performed at the scheduled time was relevant. Their inner reality and the ac- tual external reality did not match and those aspects of real- ity appeared to be in conflict with one another. In addition, the narratives gave the impression that the participants were shocked and they said they were unable to understand what was going on when they were given the information about the cancelled surgery. They mentioned that the entire situation felt unreal, like ‘this cannot happen right now’. One partici- pant described her experience like this.
(Silence) Hmmm, I was completely blank, it was so unreal. It was so unreal, because I had
been nervous about the operation and… and longed for it as well, so I could become well and stay outdoors walking like normal people and start working again and so on… Yes, and that was that (the person begins to cry)
(P 1) A woman whose surgery was cancelled as she waited in her hospital bed in the afternoon, after being set for surgery with fasting, showering and so on, questioned the information about the cancellation. She became confused; she was at the hospi- tal, prepared for surgery. What was the problem with having surgery the next day? And why should she be sent home? The patients who were going to have surgery the next day were at home, and she was already in hospital. The only answer she got was ‘this is how it works’.
Half past three or thereabouts, the doctor came and tapped my leg, because I was taking a nap and didn’t hear him coming, I told him that I was happy to finally get the surgery done. I was looking forward to having something to eat, that was the only thing I could think of.
I was dizzy and my blood pressure had fallen and then he said, ‘Regrettably, there will be no surgery’. Okay, then it will be tomorrow.
I thought I had no idea that they were going to send me home right away. This wasn’t even possible. So, he said, ‘You’re allowed to go home now’. I packed my belongings and went
TABLE 1 Example from the structural analysis
Meaning units: what is said ‘quotes’ Condensed version: what is
spoken about Code Theme
We were at home eating lunch… as we were supposed to arrive at hospital at three o'clock; I think it might have been half past two, then, just then. It was my wife who took the phone call and, to begin with, we did not think it was true. We were really upset about the message… now! When the operation was so close, and it was not going to take place ….it was an unreal feeling. (P 4)
Did not think it was true It was an unreal feeling Were really upset
Unrealistic HurtBroken expectations
Ending up in two aspects of reality
It really is powerlessness, as if I am caught between a rock and a hard place. I am completely in the hands of others and I cannot really do anything. At least that is how I feel (P5)
It really is powerlessness In the hands of others I cannot really do anything
Helpless Being trapped Unfairness Losing control
Being exposed to an injustice and its unpleasant consequences She is there and he is here, a little bit like… what is the
name of that game? Dominoes, yes, yes, yes, like a pawn in a game and that is how I feel (P5)
Like a pawn in a game Feeling ignored Objectify/reduce Not being important/
excluded
Being a pawn in a game
It feels almost as if I have undergone a personality change because of all this. I’m not the person I was, I feel a little bitter, I really do (P5)
I'm not the person I was, I feel
bitterness Feeling changed Being surprised by
one's reactions and feelings
home. (pause) Then it became completely black…. it was like pulling down a blind, whoosh.
(P1) One patient described her reaction to the cancellation as a strange feeling, like being deceived, and her picture of the reality did not agree with what the hospital staff told her. She had called the surgical ward the day before and was informed that her surgery would take place at the appointed time. Her impression was that the surgical ward would have known that her operation was going to be cancelled, in the previous phone call, but that the staff had not told her the truth. On the day of the appointed surgery, she received treatment by a podiatrist, and on her way home, she met neighbours in the elevator.
‘When we see you next time,’ said my neigh- bour, ‘you will be newly operated!’ ‘Yes,’ I said,
‘it will be so wonderful.’ When I walked into our apartment, my husband said: ‘Have you heard?’
‘No what?’… You have millions of thoughts … has something happened to the kids, our grand- daughter? … ‘Well, there will be no surgery,’ he said… ‘Are you kidding? … This must be a bad joke,’ I said… ‘No, unfortunately, no joke,’ he says… That was that … I was knocked for six and ended up in bed.
(P 5) The participants specified the need for an explanation of the cancellation and talked about not getting access to this information. In their reality, a follow- up call later was to re- ceive confirmation of a new appointment. Likewise, an ex- planation of why the cancellation happened was expected, as they wanted to be sure that the cancellations were made honestly. Not all the participants received these phone calls, which added to their ambivalent feelings about the future. It gave the impression that the situation was difficult to handle without complete information. When there were no or only limited explanations for cancellation, it appeared the partici- pants became confused and did not understand why the can- cellation occurred.
Much information is needed. Not just calling and saying, unfortunately, there are so many emergency cases, so we must cancel your op- eration, we are sorry … (laughs) oh well, I am also sorry ……they might have thought about how important it is that the patient gets as much information as possible … to be able to process the cancellation effectively and maybe they could have thought of a follow- up call.
(P 4)
Being exposed to an injustice and its unpleasant consequences
The participants appeared to place great confidence in the surgery, and its outcome and mentioned feelings of unfair- ness relating to the cancellation. Everything had focussed on waiting and planning the surgery and the aftercare, and they said that they had done everything they could to prepare for surgery. When the cancellation occurred, they felt ignored, the whole situation was experienced as an injustice and it harmed them. It took a lot of strength to adapt to the new situation. In spite of this, they were the ones who had to deal with the consequences. A man described and presented his feelings in the following way.
On my way home, I was assaulted by two guys.
I got a lot of knocks to my neck and back. Then I was taken to the ER at the hospital. It was the same feeling. I was cursed and had done nothing, they were drunk and, yes, … just messed up … so they assaulted me and it resulted in my lying there with the after- effects in a hospital bed and I couldn’t move …. They hurt me and I was angry.
I was just lying there because of them, just be- cause they were drunk, and it is the same feeling.
(P 7) The participants expressed frustration, and their thoughts were focussed on pondering over the future, if things would improve or deteriorate in the near future. The sense was that the surgery was lost and all their expectations had been taken away. One man described these emotions as an emptiness and a loss.
I felt dissatisfied … I felt a bit disappointed not angry, but … I felt an emptiness. Like … when you have expectations that are taken away from you.
(P 4) A participant whose surgery was cancelled when he was already in hospital after being completely prepared described another reaction related to injustice. A great deal of effort and planning had been put into managing his work, which involved several co- workers. As the surgery was cancelled and he returned to work earlier than expected, the whole team needed to rearrange their working schedules. In response to his frustration, he reacted destructively and even took up smoking after having quit before surgery, in order to improve the surgical outcome.
It had gone so well, until then. I didn’t smoke
at the time. I had stopped two days before, but
I was so damned mad, I went to the petrol sta- tion and bought cigarettes immediately. Without even thinking about it.
(P 7) One participant described the cancellation as a major dis- appointment. He was overweight and had been told to lose weight before undergoing the surgical procedure. He did ev- erything to lose as much weight as possible and had been dieting for almost a year. When he was finally admitted to hospital to undergo surgery, he was told that the surgery had been cancelled. He felt that the cancellation was incredibly unfair, and he felt hurt. He added a metaphor to describe his emotions.
It was like an anti- climax, like a story: ‘A shipwrecked man survives sharks, storms and famines and finally reaches a desert island, where he is killed by getting hit on the head by a coconut’.
(P 10)
Being a pawn in a game
There were narratives about a sense of being treated routinely with a lack of dignity, as though the hospital staff did not pay enough attention. One participant described the experience as being ‘a pawn in a game’ that the hospital could move around as it pleased. The participant expected to be treated as more than just a ‘number on a list’.
Sometimes I wonder if they know what they are doing with people. It’s probably not easy being them, but that isn’t what I mean, but (silence) I’m a human not just a number. I am a human being.
(P5)
Being surprised by one's reactions and feelings
The interviewees indicated that, because of the cancella- tion, they did not know how to process their feelings and said how they were easily irritated, sad and bitter. They were surprised by having feelings of jealousy and being egotistic; not noticing others in the same situation. The par- ticipants said this was not how they would normally have reacted or thought of themselves. One woman described her reaction.
I didn’t want to cause trouble; I’m not that kind of person. I’m very much like that, but now, I
thought, this time will not be like that, I’ll make my presence felt. Now I will call and really work hard to get a new scheduled time.
(P9)
COMPREHENSIVE UNDERSTANDING AND REFLECTIONS
Considering all the outcomes, the understandings indicate that the meaning of having surgery cancelled leads to a sense associated with being rejected and excluded. Once patients receive a scheduled time for surgery, the care provider prom- ises that the patients will undergo surgery at the clinic. This promise evokes trust between the patients and the healthcare workers. Trust forms the basis of confidence. The minute the cancellation is conveyed, and the promise is broken and dis- appointment sets in. Being let down is a shocking feeling; it appears that participants feel confused and helpless, and, in addition, their trust disappears.
Being cancelled from surgery can also be understood as feeling that you do not belong, being betrayed, rejected and not taken care of. Not belonging might be one of the deepest, most hurtful emotions for an individual [27, 28]. The experi- ence of being rejected is individual to the recipient and most commonly refers to feelings of shame and sadness, or else suffering when others do not accept them [29]. For instance, a person who feels rejected after an incident that ends a friendship or a group of people excluding a person, if a mem- ber of a team is not chosen to participate in a competition, for example. Moreover, rejection can be either an active or a more discreet action and be either conscious or unconscious.
According to Louise et al., [30] involvement in social rejec- tion can lead to a number of unpleasant consequences, such as feeling lonely, being angry, experiencing a loss of confi- dence and, in the worst case, being discouraged. Moreover, Louise et al. [30] explain that trusting people and society in the future becomes problematic. In the present study, the structural analysis revealed that the participants were affected by similar unpleasant consequences by being hurt and feeling helpless.
The participants also described being frustrated and blam- ing the scheduling administration for not handling the can- cellation in a trustworthy manner. In the theme ‘ending up in two aspects of reality’, the participants’ reality was not in harmony with the cancellation and they said it was difficult to trust the information delivered in relation to the cancelled surgery. This can be understood as an experience of reduced confidence in the healthcare service [31].
Williams et al. [32] clarified that social rejection di-
rectly affects vital psychological needs, such as control, self-
esteem, belonging and having a meaningful existence. All
these conditions appear to threaten the participants in the present study. For instance, in terms of being unable to re- turn to work, which indicates ‘not belonging’ to normal daily life. Moreover, instead of being free from pain, the partici- pants were forced to stay at home with impaired mobility and pain. This can be recognised as suffering from the loss of any meaningful existence. In the same manner, the participants lost control of the opportunity to make their own decisions about the forthcoming treatment. As the dialogue about the upcoming care was absent, the patient's view of the surgical processes was reduced to simply waiting for ‘your turn’. This increased the patients’ experiences of feeling rejected and can be understood as being excluded and standing outside the social community, without being able to influence and take part in one's care.
The theme ‘being exposed to an injustice and its unpleas- ant consequences’ illustrates that the participants had pre- pared for surgery; for example by following a strict diet in order to lose weight, stopping smoking, stopping working and, in some cases, the workplace had brought in a substi- tute. All this had consequences for the participants, once the promises of surgery were broken. The participant expressed this as an unfairness and being badly treated. This could be understood as increasing the participants’ experience of not being taken care of.
In the theme ‘being surprised by one's reactions and feel- ings’, the participants said that they did not recognise their new feelings after the cancellation and were both embar- rassed and surprised. Scheff [33] described shame as a social emotion, as it depends on other people's views of how they perceive or expect others to behave according to the norms in the present culture and thoughts of how others see us are a central aspect of shame. Moreover, shame is a taboo feeling that we are not always willing to discuss [27]. The participants in Brown's study [34] described shame as, ‘An intensely pain- ful feeling or experience of believing you are unusable and therefore unworthy of acceptance and belonging’ (a.a, p. 45).
The participants in the present study described similar ex- periences of being ashamed, and it was difficult to tell other people that their surgery had been cancelled. The participants felt that the hospital did not choose them but instead rejected them. As a result, feelings of uselessness were aroused and, in addition, they felt that they were worthless.
Suffering related to care is a concept within Eriksson's theory of caring [35] which means clarifying that the dig- nity of patients can be dishonoured by the health service personnel when the patients’ needs are not understood or taken seriously. In Berglund et al.’s study [36], the partic- ipants experienced suffering related to care in situations where they experienced that their illness became the focus of health care and the patients’ needs were ignored. The par- ticipants, therefore, felt objectified and reduced to only being a diagnosis. The participants in the present study described
the same thing in the theme of ‘being a pawn in a game’.
Moreover, Berglund et al. [36] claim that the mission of the health service is to support good health care and indicate that the causes of suffering in relation to care mainly occur in the healthcare service. Similarly, in the present study, the partic- ipants experienced distress after not being informed by the healthcare workers.
In the interviews, the participants claimed that the health- care workers did not always realise that the cancellation had an emotional impact, which mostly turned the patient's view of his/her recovery into a negative spiral. The caring encoun- ters in Halldórsdóttir's study [37] are illustrated as honest and respectful, with the ability to regard the patient as a person.
Moreover, with a willingness to do their best for the patient and empower the participants in their own care. Further, Halldórsdóttir [37] describes uncaring encounters as feeling ignored, not being listened to and showing no willingness to understand the patients’ situation and needs. In the inter- views in the present study, expressions of uncaring encoun- ters emerged. This was due to an attitude that the healthcare workers did not do everything they could to make them well as soon as possible. Instead, the participants were told in a rational manner that the surgery had been cancelled. Sokol- Hessner et al. [38] refer to emotional harm, as an injury to the patient's dignity and further, a failure to respect the patient.
Moreover, dignity and respect are fundamental cornerstones of all treatments. Emotional harm could be compared with Halldórsdóttir's [39] theory of uncaring and Eriksson s’ [40]
theory of suffering from care.
The most important findings demonstrate the partici- pants felt excluded, as the hospital did not notice them and honour their commitment. A relationship between health- care workers and the patient is defined in positive terms as the foundation of caring and the core of good health care [41]. On the other hand, it has been demonstrated that a defective care relationship might lead to a feeling of not caring, thereby increasing the suffering of patients [39, 42- 44].
Kasen et al. [45] stated that an unreflecting, static care organisation contributes to not involving the patients in their healthcare plans. In addition, the patients’ needs are not met.
This highlights an occasion on which the mutual goal of hav- ing surgery at the agreed time was not realised. In addition, the participants in the present study felt they had been be- trayed and rejected, which could be interpreted as a negative relationship, exposing patients to unnecessary suffering and emotional harm. The Swedish law [46] established emotional harm as a care injury, that is equal to all other medical and healthcare- related errors.
Eiseberger et al.’s [47, 48] research indicated that feel-
ing socially excluded triggers some of the same neural areas
that are stimulated in response to physical pain, demon-
strating that social rejection is deeply hurtful [47, 48]. The
participants’ descriptions of the cancellation in the present study are associated with physical pain; ‘“getting hit on the head by a coconut”, “being punched in the face” and “having the same feelings as being beaten”’. This indicates that the participants were truly wounded by the cancelled surgery.
Most of the participants in the present study did not re- ally understand why their surgery had been cancelled. A similar study in patients’ perspective of communication after cancellations in orthopaedics [46] has also shown that communication- surrounding cancellations do not meet patient expectations. In situations when surgery must be cancelled, patients are greatly vulnerable. Therefore, the healthcare workers responsibility is to safeguard patients’
dignity with respect to the patient's needs and emotions.
METHODOLOGICAL REFLECTIONS
According to Lincoln et al., [49] credibility, dependability, confirmability and transferability are important in quali- tative surveys. In the present study, we explored all four aspects in order to create the trustworthiness of the study, through reflection during the whole research process in its full context.
Credibility is an important part in generating trustwor- thiness [50]. This by requesting the researcher linking the study's results with reality in direction to validate the confi- dence of the result. During the analyses, all authors discussed the findings from their pre- understanding of orthopaedics and research.
One approach to assess the dependability of data is to clarify the research process [50]. In the present study, we at- tempted to give a view of the process by describing the three steeps of the analysis, with examples from the structural analysis (Table 1) and by providing rich and detailed descrip- tions, supported with quotes from the original transcripts. In addition, we intended to give the reader an opportunity to assess the trustworthiness of the research.
In qualitative research, the researcher, who also is a part of the phenomenon that is studied, is the main instrument for sampling and analysing the data [51]. According to Pollit et al., [50] confirmability is reached by the capacity of the research method to produce data, as objectively as possible, likewise the researcher's honesty in terms of inter- pretations of the data. In the present study, the researchers’
pre- understanding was reflected, to avoid personal opinions in the interpretations of the narratives.
An indication that the interviewer was able to establish a safe environment for the participants in the present study were exposed by some of the participants who expressed relief, as, for some, this was the first time they had shared their stories. According to Dalberg et al., [52] the quality of a narrative rests on the interaction between the interviewer
and the interviewee. People do not simply share their narra- tives of lived experiences just because someone claims to be a researcher. Sharing one's life experience is a matter of trust.
When it comes to transferability, [50] it is important to note, that before using the findings in another context, a re- contextualisation needs to be undertaken. Patients in other areas whose surgery is cancelled might also experience being rejected. However, if the results are transferred to new con- texts, the procedure and organisation of planning surgery in the new context must be considered.
IMPLICATION FOR PRACTICE
One way to obtain improvements for both patients and healthcare workers could be to design a care guide that clari- fies what (the content of the information), how (communica- tion tools), who (deliver; nurses, physicians or co- ordinators) and when (at what time) the patient should receive informa- tion about the cancellation. Moreover, the guide should have one part including an apology to everyone whose surgery has been cancelled.
Cancellations may be inevitable, but there are meth- ods that reduce the risk. In a study [14] in which a hospital changed the organisation for scheduling surgery by involving the participants in THR and TKR surgery planning by de- ciding on the date of surgery, the number of cancellations decreased [13, 14]. Likewise, there were fewer cancellations when the pathways were organised in accordance with the participants’ own circumstances and wishes [53].
CONCLUSIONS
From the participants’ perspective, cancelled surgery af- fected them more than the healthcare workers appeared to understand. This is due in part to the incomplete information and the uninvolved healthcare workers delivering informa- tion on the cancellation. In addition, patients feel rejected and helpless. Cancellations should be seen as a situation in which patients’ hope of living a pain- free, active life is inter- rupted. The results of the present study provide healthcare workers with opportunities to reflect on the organisation of the specified care in cases where any surgical procedure must be cancelled.
ACKNOWLEDGEMENTS
Mrs Marita Hedberg has contributed knowledge and experi- ence to the generation and selection of the participants in the study.
CONFLICT OF INTERESTS
The authors declare that they have no competing interests.
AUTHORS’ CONTRIBUTIONS
UC, EH, JK and EL were responsible for the study concep- tion and design and the drafting of the manuscript. UC per- formed the data collection and the data analysis. UC and EH provided the appropriate ethical information to the ethics committee. JK and LEO made critical revisions to the article.
EL supervised the study. All the authors read and approved the final manuscript.
ETHICAL APPROVAL
Approval and consent were obtained from all the participants prior to each interview. The study received permission from the Regional Ethical Vetting Board in Gothenburg (Dnr: 531- 12).
DATA AVAILABILITY STATEMENT
The data that support the findings in this study are available on request from the corresponding author. The data are not available publicly, as they contain information that could compromise research participant privacy.
ORCID
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