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Keywords:

  • cancer;
  • disfigurement;
  • grounded theory;
  • interviews;
  • nurse–patient interaction;
  • nursing;
  • theory development

Abstract

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgements
  11. Funding
  12. Conflict of interest
  13. Author contributions
  14. References

Title. Surgical facial cancer treatment: the silencing of disfigurement in nurse–patient interactions.

Aim.  The aim of this study was to explore and explain how disfigurement is addressed in interactions between patient and nurse during the period in hospital immediately after undergoing disfiguring facial surgery.

Background.  Facial disfigurement as a result of head and neck or eye cancer surgery is associated with psychosocial problems; however no successful intervention program has been developed. Empirically derived knowledge about what goes on in the patient–nurse interaction is missing.

Method.  A grounded theory design was used, with data derived from audio-recorded conversations between and individual interviews with 14 patients and their connected nurses, from three participating university hospitals. Data were collected in 2007.

Findings.  A substantive model with silencing disfigurement as a core category was developed. The model included three categories; minimizing disfigurement, disfigurement is a luxurious problem and another time, another place. A condition of implicit and unverified professional assumptions about addressing the issue of disfigurement became an underlying character. Without this the core category could not exist.

Conclusion.  The model elucidates a silencing process maintained by preconceived assumptions which need to be challenged to help patients adjust to their changed appearance after facial cancer treatment.


What is already known about this topic

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgements
  11. Funding
  12. Conflict of interest
  13. Author contributions
  14. References
  •  Facial disfigurement is associated with psychosocial problems such as depression, social phobias and anxiety.
  •  The quality of the nurse–patient interaction is essential to help the patient to adjust to postsurgical conditions.
  •  Patients with visible disfigurement seek professionals who can deal with their special concerns, nurses lack knowledge in this field.

What this paper adds

  •  A substantive empirically derived model of nurse–patient interaction reveals that disfigurement was silenced in surgical facial cancer treatment.
  •  The model highlights the need for changes in the nurse–patient interaction, by testing assumptions and thereby giving voice to the patients.
  •  The model can be an important element in future development of a successful intervention program.

Implications for practice and/or policy

  •  Professionals’ assumptions needs to be constantly challenged to openly address patients’ values and concerns.
  •  Further research is needed to generate possible interventions that aim to improve the lives of patients experiencing facial disfigurement.

Introduction

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgements
  11. Funding
  12. Conflict of interest
  13. Author contributions
  14. References

Facial disfigurement as a result of surgical treatment for head and neck or eye cancer comes in many forms. It is different from other disfiguring conditions since it cannot be camouflaged, and is therefore particularly distressing, interfering with the person’s sense of identity and relationship with others (Callahan 2004). Health Related Quality of Life (HRQL) studies of people with head, neck or eye cancer show statistically significant deterioration after treatment, with quality of life at its lowest 4–6 months after treatment, then slowly improving after one year, but at a lower level than that of the general population (Bjordal et al. 2001). Patients face a complex area of problems after surgery. Among these, socio-cultural factors and problems relating to social situations are of great importance (Morton 2003, Rumsey et al. 2004). Those at greatest risk of experiencing low HRQL are people with low levels of social support and women (Katz et al. 2003). Not only patients but also their close relationships are affected (Krouse et al. 2004), but the problems are seldom reported in patients’ medical records (Bjordal et al. 1995). Psychosocial problems are reported by patients of all ages and even in the case of minor lacerations (Blood et al. 1995, Tebble et al. 2004). In a review of the literature, Clarke (1999) argues that investigation of facial disfigurement independent of medical diagnosis may help understanding patients’ difficulties in social interactions. Until now, no effective intervention programme to manage psychosocial dysfunctions has been developed (Semple et al. 2004, Bessell & Moss 2007).

Background

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgements
  11. Funding
  12. Conflict of interest
  13. Author contributions
  14. References

In the period in which patients are still in hospital after surgery (usually 2–10 days), they encounter various nurses on the surgical ward. The quality of the nurse–patient relationship is, according to many theories of nursing, essential to patients’ recovery and well-being, since it provides an opportunity to help patients adjust to their situation (Benner & Wrubel 1989, Watson 2008). Research has shown how nurse–patient relationships of different types vary in their ability to exploit this opportunity (Zoffmann & Kirkevold 2007). It has been shown that nurses on surgical wards are aware of the gap between the kind of care they feel they ought to give and what they are able to give, because of lack of time and too many tasks (Enns & Gregory 2007). This can give rise to problems, as a good relationship helps patients to express their needs (Henderson 1972, Zoffmann et al. 2008), whereas a poor relationship may jeopardise early identification of patients’ problems, thereby affecting their recovery (Minick & Harvey 2003). Approaches towards dealing with the issue of disfigurement are not well documented, but nurses may play an important role in helping patients live with disfigurement. However, we need knowledge from both a patient and a nursing perspective about what goes on in the interaction between them to develop supportive interventions. To fill this gap, we carried out a study to see whether and how nurses meet the needs of these patients.

The study

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgements
  11. Funding
  12. Conflict of interest
  13. Author contributions
  14. References

Aim

The aim of the study was to explore and explain how disfigurement is addressed in interactions between patient and nurse during the period in hospital immediately after undergoing disfiguring facial surgery.

Design

The study was explanatory and we followed the recommendations of the grounded theory approach (Glaser 1978, 1992).

Participants

Dyads of patients and nurses taking care of them were sampled. The patients were all admitted to either a surgical ear, nose and throat department or to an eye surgery department at one of three participating university hospitals during 2007. The patients were introduced to the study a few days after their surgery, at a point when they had regained some strength and had met other people on the ward. They ranged in age from 25 to 78 years; five were female and nine were male. All but one was able to communicate orally despite surgery; one patient had to supplement his spoken words with written comments. Nurses were included if they were assigned as the patient’s main caregiver on the day of data collection. The nurses ranged from 22 to 45 years in age, all were registered nurses, female and had between 1 and 10 years’ experience of caring for patients with disfigurement. None of the patients or nurses approached refused participation.

Data collection

In each dyad, a nurse-patient conversation that was expected to be significant by the nurse, either in terms of having a quiet moment or planning to raise a specific issue (e.g. discharge planning) was audio-recorded by her, with the permission of the patient and without the researcher being present. The nurse was asked to behave and talk to the patient in an everyday manner to reflect usual interaction practice and usual conditions for conversation.

The researcher (HK) then listened to the recordings, some with noise or short interruptions from others. All consisted of small talk, physical assessments or giving practical advice. Recordings were followed up by individual interviews with the patient and nurse. In the interview they were asked if they had had another more significant conversation they could retell. Each patient was during interview asked if they had discussed the issue with other healthcare professionals: none had. The interviews took place at the hospital and lasted between 20 and 60 minutes. Theoretical sampling was used in the selection of the patients. For example, initial analysis of interviews with one of the first nurses revealed that she used size of disfigurement as an indicator of whether to include the problem in conversation. In the light of this, a patient who scored higher on the Disfigurement Scale, which was administered during participant recruitment (Dropkin et al. 1983), was included to elucidate whether this would increase attention towards the issue of disfigurement. In another example of theoretical sampling, we included patients with prior experience of disfiguring surgery, because our analysis suggested that patients were unsure about when or whether to raise the subject of disfigurement. The aim was to examine whether these patients had a different approach towards communication with professionals. The first interviews were carried out using very open questions such as: how has it been for you since surgery and what have you talked to the nurses about. Later on, the interviews were more focused, with the purpose of developing emerging patterns. Theoretical saturation occurred when we had recruited 14 patients and their associated nurses.

Ethical considerations

The protocol was approved by the appropriate ethics committee. Before inviting each patient to participate in the study, the researcher consulted professionals acquainted with the patient and followed their advice as to whether and when it would be appropriate to contact the patient. The professionals then made the first enquiry about willingness to participate, with the researcher subsequently giving the patient a more detailed introduction to the study. Despite being in an extremely vulnerable position, all patients wanted to participate, some by explicitly stating that they wanted to help future patients. Previously it has been shown that telling one’s story can help adapt to a difficult situation (Holloway & Freshwater 2007).

Data analysis

Analysis was carried out in accordance with Glaser’s recommendations (Glaser 1992), and included a constant comparison method and analysis and the use of written memos. In the first step, transcripts of data were entered into the Nvivo software program, and then open coding was conducted line-by-line on all transcripts in search of initial in vivo codes. In step 2, the software was used to gain an overview of the codes, which were then compared constantly back and forth with a paper transcript of all data, and across all dyads, in an attempt to answer the question ‘What is happening in the data?’ This continued throughout the analysis process, until theoretical subcategories and possible links between them emerged. Saturation was considered achieved when data collection revealed no new data and presented a meaningful level of interpretation. Diagramming was used throughout the theory development. An example of this was in determining the links between the three categories, disfigurement as a luxury problem, minimizing disfigurement and another time, another place, which we at first considered to be equally important. The creative process of diagram drawing, however, stimulated attention towards one of the categories, disfigurement is a luxury problem, determining it to play a more prominent part. In step 3, links and relationships between concepts and the development of a theoretical model were explored and confirmed. During analysis, codes, categories and different interim diagrams were analysed by the first author, and later discussed with the other authors, who are experienced grounded theory researchers. This, together with repeatedly returning to the original transcripts to ensure that the developing theory truly described the data, created the basis for ensuring validity (Glaser 1978).

Findings

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgements
  11. Funding
  12. Conflict of interest
  13. Author contributions
  14. References

A model of interaction between patient and caregiver that identified silencing disfigurement as a core category was developed, and this is shown in Figure 1. The model includes three categories: disfigurement is a luxury problem, minimizing disfigurement and another time, another place. The existence of implicit and non-verified professional assumptions was identified as a special underlying characteristic, without which the other categories could not exist.

image

Figure 1.  Silencing disfigurement in nurse–patient interactions.

Download figure to PowerPoint

Immediately after the cancer had been diagnosed, question of survival had been foremost in the minds of both patients and professionals, according to the interviews. None of the patients had hesitated or had any doubt about whether to accept the operation:

Life is more important than this. You’re scared about your life – aren’t you? How it will look at the end… I’ll wait and worry about that later (Man, 47 years).

Survival being more important than appearance thus meant that the category disfigurement is a luxury problem seemed to be at play even before the operation as a tacit agreement between patient and professional as a reason for undergoing surgery.

Once a patient was on ‘the other side’, re-socialization in the new situation began; the patient had to get on with the life they had left, but with the experience of having had cancer and having undergone a change in their appearance. The fact that their first experiences took place in the hospital setting was appreciated by patients:

It’s a good thing that I only have to walk around in here, not outside. People outside would stare at me…my face is lop-sided (Man, 62 years).

After a patient had undergone treatment, the notion of disfigurement as a luxury problem persisted. Centrally positioned, mute and unquestioned, seeing disfigurement as a luxury problem formed a pattern together with minimizing disfigurement and another time, another place, which triggered a silencing process. By not questioning the importance of disfigurement both nurses and patients continued silencing the issue of disfigurement, but did so independently of one another, since their assumptions were unchallenged and unverified by each other.

Disfigurement is a luxury problem

Patients with disfigurement had to work out not only how to deal with the outside world, but also how to interact with the nurses. One way of doing this was to observe how nurses reacted towards other patients. By observing the nurses going about their business, patients developed a sense of how to behave. Contact beyond what patients assumed that nurses might think appropriate, was seen as being generally undesirable, for example calling frequently for a nurse. As one patient put it:

I remember the first patient I was sharing a room with. He called constantly. Uh…no one could stand that…I haven’t used them (the nurses) for anything. It hasn’t been necessary. They come now and then and ask if I need anything, but I don’t. I can get up by myself and do other things (Man, 62 years).

Getting a sense of when to talk to nurses and what topics to bring up also meant getting a sense of what problems might be considered ‘luxury problems’ and therefore inappropriate to discuss, because discussion would mean taking up a nurse’s valuable time (maybe even at someone else’s expense). In some cases the combination of smiling and the ‘overt business’ in clinical encounters seemed to trigger perception in patients that it would be inappropriate to address the issue of disfigurement. This was expressed by a patient commenting on a nurse who met him with a smile, no matter the reason for calling:

They’re busy, all of them, and they always come with a smile, no matter what they have to help you with or what you ask about. So I feel that it’s a kind of luxury problem, and nothing to bother anyone with, the fact that I feel sad about looking this way. I imagine there’s probably someone out there in more need [than I am] that they have to take care of (Woman, 64 years).

Because nurses did not raise the problem of disfigurement themselves, a tacit and unchallenged idea formed about what patients should or should not expect to talk about:

But we didn’t talk about [my] appearance. I feel it must be natural for them to look at (Woman, 32 years).

The reason nurses gave for not raising the issue of disfigurement was that they assumed that the main issue for patients was to survive. This belief was not based on information from any specific patient, but on a preconceived view of what is important for such patients in general:

It’s mostly about practical things…that’s what concerns the patients….that they are suffering from something life-threatening…so the wounds are secondary…it’s the price of having had surgery (Nurse, 3 years’ experience).

This attitude was not questioned; rather, it seemed to strengthen as the nurses became more experienced in caring for this group of patients:

We see it every day, so for us it isn’t that bad (Nurse, 5 years experience).

This reduced sensitivity developed alongside nurses’ increasing experience, so that, for example, they might judge the effects by comparing today’s procedures with those years ago and conclude that patients now were better off than before:

I tell them that they’re lucky to come here, that I must admit. That they are having their surgery done by us, compared to how it would have been done earlier on…That they can talk, which the others couldn’t (Nurse, 12 years’ experience).

They also expected patients to be, literally, patient and to await the final surgical result before starting to worry, which indicates that nurses considered early postsurgery disfigurement to be a luxury problem. As a nurse said to a patient who had postsurgical disfiguration that was anticipated to show a final result after 3–6 months:

But people and [their] relatives want it to go away right away. And they don’t picture to themselves what a skin graft will be like and how long it will take for the body to accept it and for it all to fall into place. So patience and patience (Nurse, 3 years’ experience).

Minimizing problem of disfigurement

Minimizing of the psychosocial effects of disfigurement also posed a barrier to communication between nurses and patients. Some patients explained that they did not explicitly mention the subject in terms of their being a man or having reached a certain age:

Something like this doesn’t bother old people, it really doesn’t…I don’t have to go out and score again (Man, 78 years).

For others, minimizing their own disfigurement was a way of expressing relief at the fact that they had suffered less than other patients on the ward:

It could be much worse…I talked to a patient who had undergone surgery five times…she had a …right here in front…oh, ugly (Man, 63 years).

The nurses’ minimizing of patient’s problems was sometimes connected with preconceived notions about the group:

It’s a certain kind of people who get this kind of cancer – the types who buy beer and cigarettes. They shake their heads and move on. You know the type (Nurse, 1 year experience).

The expectation of a certain kind of action from a certain kind of person revealed a tendency to generalize based on stigmatizing assumptions.

Nurses also had a tendency to see the disfigurement as something separate from and not affecting the patient personally:

I don’t think it’s that terrible, because…I might see that something has changed, but I don’t focus on it. It’s just something hanging somewhere. It has to be looked after and cared for and watched (Nurse, 1 year’s experience).

Although both patients and nurses used minimization, this was not as a result of mutual agreement. Indeed, in some cases the patient and nurse had different views of the situation. This difference in evaluation was evident both in relation to the immediate postsurgical period and to longer-term expectations as to how the patient would fare after they had been discharged. In one dyad, for example, the nurse judged the disfigurement to be minor compared with that of other patients, and assumed that the patient would do the same. In this dyad the nurse appeared not to be aware of the fact that she evaluated the patient’s situation without taking into account the actual feelings of the person concerned:

He can talk and he can do everything, he looks OK…Knowing how bad it can be, on my scale what he has to put up with is not that bad in relation to what I’ve seen (Nurse, 2 years’ experience).

This patient was afraid to show his face to other patients other patients, isolating himself because he wanted to spare other patients what he thought might be a shocking sight:

The only thing I think about is that some of the people who come here for the first time might be scared…Because I remember when I first came here; I thought the people walking around here were poor souls (Man, 65 years).

As far as the time after discharge was concerned, a nurse in another dyad took for granted that ‘everything in the garden was lovely’ because the patient had close family relationships. Again this was an unverified assumption, since the patient in this dyad, who had prior experience of disfigurement, emphasized the way it had left her socially isolated. This nurse commented:

But it depends on your support base, I think. She has two adult sons and it seems like she has a good relationship with her family. So I really think that she is not that affected. I don’t think so by her appearance…(Nurse, 10 year’s experience).

The patient, on the contrary, expressed great concern. For several years she had not left her home without wearing a large scarf to cover up her disfigurement, and she felt imprisoned inside that scarf:

Some of the time you can lock yourself in. Socially and so on…then you start feeling lonely because you mightn’t visit other people because of your appearance (Woman, 64 years).

Another time, another place

In some dyads, the reason nurses gave for not raising the issue of disfigurement was that the norms of communication allegedly involved the tacit rule of ‘not bringing it up’ unless the patient mentioned it. They seemed to assume that patients did not need to talk about disfigurement as a way of coming to terms with the condition:

We do not talk to patients about it, because they have to decide by themselves how important it is (Nurse, 8 years’ experience).

In other dyads, nurses’ uncertainty about how to talk explicitly about the disfigurement was related to not knowing how this might affect the patient. One nurse was afraid of disturbing the patient’s emotional wellbeing and decided against bringing up the issue of disfigurement with a patient with many years of alcohol abuse and an unstable social situation without consulting him:

If I also had to talk to him about his appearance and the stitching around the mouth and so on…I don’t think so; it’s too much at one time. He also has social problems, so it’s a lot at one time. Then he might get psychologically out of balance, he is so well now, compared to when he was sick and had the surgery (Nurse, 1 year’s experience).

By mentioning that the patient might get psychologically out of balance, the nurse also indirectly seemed to indicate that she was unsure of how to react if that happened.

Perceiving themselves unable to work out the situation for the patient also seemed to be a contributory reason why nurses did not take the initiative to talk about disfigurement:

We don’t mention it, because we can’t do anything about it anyway (Nurse, 5 years’ experience).

Feeling under pressure to carry out practical tasks, nurses seemed to concentrate on moving ahead with specific aspects of the set plan:

I think it’s very relevant, but there are so many things in our daily work…it’s stuffed with things to do…then we would have to organise it or put it into a system. It isn’t planned as it is now (Nurse, 3 years’ experience).

Other nurses explained their reluctance to raise the subject in terms of the specific time or the specific setting. The time was never right. It was always either too soon or too late. As one nurse explained:

Well, it’s often at a later time, much later, not right after surgery; maybe months after that you get to talk about the scarring, because it’s the life-threatening illness that has to be dealt with after surgery (Nurse, 5 years’ experience).

Others were convinced that colleagues had already raised the issue. One nurse explained that she saw the question of disfigurement as one of several aspects of the usual information that was given to patients prior to surgery:

It would be one of those things I would have done if I’d talked to him during admission…like when he wakes up he must be prepared for being stitched here and a plaster there. Since I do it, I presume that my colleagues do it as well (Nurse, 1 year’s experience).

Other nurses thought that talking about this would be done in another setting or by another professional:

I know she has talked to the doctor. I do not know if that has helped…I do not think that she would be interested in me sitting on a chair and philosophising over her situation (Nurse, 3 years’ experience).

Discussion

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgements
  11. Funding
  12. Conflict of interest
  13. Author contributions
  14. References

Focusing on nurse–patient interactions might have missed important input from family or friends, which is a limitation of the study. With regard to the validity of the conversational data from patients and nurses, nurses might have changed their behaviour because they were knew they were being audio-recorded and might have been eager to show themselves in as good a light as possible. Therefore, we would expect the identified patterns to be even more pronounced in usual care. The data collection was done in Denmark, but the findings contain explanatory elements that may be useful in other countries, although further study is needed to verify this.

The finding that the question of disfigurement was silenced in nurse–patient interactions is of great importance, and can contribute to the body of knowledge on nurse–patient interaction and on disfigurement. In this study we found that nurses tended to use implicit and unverified professional assumptions about patients’ preferences and needs, which created a risk of not seeing an individual patient’s specific needs. This accord with previous research that has highlighted the ways in which nurses tend to treat patients as members of a group rather than as individuals (Zoffmann et al. 2008). Lack of knowledge among nurses about how and when to deliver psychosocial support, previously found by Clarke and Cooper (2001), was also an element in our findings. Additionally, our data revealed that professional knowledge was only part of a pattern included in the silencing process. In another study, discrepancies between patients’ need for emotional support and the care received was found, stressing that patients’ perspectives on positive support included the need for staff approachability, awareness and time to talk (Furness 2005). This highlights the importance of our identification of implicit and unverified assumptions as underlying conditions that underpinned the silencing process. Studies with other patients with cancer have shown that their levels of distress are associated with both emotional and physical functioning (Graves et al. 2007), and that social functioning is a reliable predictor of depressive symptoms (Kurtz et al. 2002). Such symptoms may to some extent relate to having cancer, but the same negative relationship can be seen between psychosocial function and facial trauma and scarring (Levine et al. 2005). A reciprocal approach in nurse–patient interaction is vital to problem-solving (Zoffmann & Kirkevold 2005). Mutuality between nurses and patients depends on nurses openly soliciting patients’ views on whether or not they are experiencing psychosocial problems and how they might be supported.

In line with Newell’s fear-avoidance model of coping with disfigurement, silencing could be seen as a strategy to avoid coping with problems, and one that, as Newell (Newell 2000) has shown, is associated with problematic long-term adjustment. A grounded theory study examining long-term adaptation to facial surgery (Furness et al. 2006), on the other hand, showed that avoidance in the early stages of recovery can be a deliberate response to provide temporary relief. In our study, regarding disfigurement as a luxury problem might partly be seen as an avoidance strategy. Silencing, on the other hand, has been considered a specific consequence of patients generally relying on nurses’ initiatives in raising problematic issues (Walker & Dewar 2001). Reflective practice, in which nurses check their assumptions by talking to patients, can take place only where the practice is not taken for granted (Gustavsson et al. 2007). Thus, by silencing the issue of disfigurement, nurses missed the chance to create potentially ‘difference-making’ moments (Summers 2002), and left the responsibility with patients.

Alcohol abuse is prevalent among patients with head and neck cancer prior to surgery and has been estimated to be present in 63% (McCaffrey et al. 2007). Nurses had preconceived notions of patients with problems related to alcohol. As a consequence, stigmatization sometimes became an unintended part of silencing disfigurement, when certain kinds of actions were expected from such patients. Minimizing responses included seeing the disfigurement as something separate from the person, a strategy similar to that of ‘making ordinary’. When doing this, nurses treat extraordinary phenomena as if they are ordinary as a defence against their own anxiety when dealing with extreme situations (Parker 2004). Nurses’ silence when they are unsure of how to address a patient who ‘might get out of balance’ can be seen as a strategy of ‘making ordinary’. According to Goffman (Goffman 1963), being visibly different carries the threat of being treated in a stigmatizing manner by others. One way to deal with this is to cover up the problem by minimizing the difference, in the hope of being treated ‘as a normal person’. In our study, patients’ use of minimization may be seen as a covering strategy.

Issues that are ‘difficult to talk about’ arise in other areas of nursing. A study of communication about sexuality found that this difficult issue was characterised by mismatched expectations, which led patients to seek out healthcare professionals who could offer a more patient-centred form of communication (Hordern & Street 2007). The difficulty for our nurses included the need to challenge assumptions, as indicated in a study of ethnic minority patients which showed that nurses lacked sensitivity to particular beliefs or behaviour (Richardson et al. 2006). In another study, the principal barrier to communication was nurses’ perception that patients did not expect them to address sexual problems (Magnan & Reynolds 2006). This perception may be based on nurses’ stereotyped image of themselves as well as that of their patients (Guthrie 1999). The findings in our study of disfigurement concur with those of the above studies, as they all are a consequence of absent patient–nurse communication.

Williams (Williams 1998) described how, in an acute-care hospital, nurses used a technique called selective focusing, as a strategy to balance patients’ needs against the perceived amount of time available. In our study, this might explain the nurses’ tendency to focus on factors they assumed to be good predictors of whether patients were likely to experience problems. An example of this was nurses’ tendency to exaggerate the positive importance of a good social network and to minimize patients’ problems accordingly.

Literature on nurse-patient communication shows a discrepancy between nurses’ perceptions of good-quality care and the care actually provided. Shortcomings have included a predominant focus on instrumental tasks (Gordon et al. 2009), the use of distancing tactics, controlling conversation around nursing tasks (Kruijver et al. 2000) and an impersonal approach (Pound & Ebrahim 2000) Maguire (Maguire et al. 1996) argued that the reluctance of nurses to take the initiative to enquire about patients’ concerns and feelings was because of fear of damaging patients psychologically and to a belief in their own inadequacy, reasons which were also found in our study.

Since studies of health-related quality of life (De Graeff et al. 2000, Chandu et al. 2006) show that patients risk experiencing even greater problems later on in the illness trajectory, further investigation is needed into how patients with facial cancer experience this later period.

Conclusion

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgements
  11. Funding
  12. Conflict of interest
  13. Author contributions
  14. References

Our proposed model of nurse–patient interaction in the early postoperative period is of relevance to both patients and nurses in their encounters on surgical wards. It offers elucidation of a silencing process, that occurred in an otherwise protected environment before patients with facial disfigurement were discharged. It has implications for nurses in clinical practice, who obviously cannot rely on their unverified assumptions about whether or not their patients need help in managing facial disfigurement. Opportunities to help patients can be exploited if values, beliefs and concerns are openly addressed in nurse–patient interaction.

Acknowledgements

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgements
  11. Funding
  12. Conflict of interest
  13. Author contributions
  14. References

We would like to thank all participating patients and nurses who gave their time and expertise. We would also thank the following for economical support: the Danish Nurses’ Organization, the Lundbeck Foundation, the Novo Nordic Foundation and the Augustinus Foundation.

Funding

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgements
  11. Funding
  12. Conflict of interest
  13. Author contributions
  14. References

Funding was received from the Danish Nurses’ Organization, the Lundbeck Foundation, the Novo Nordic Foundation and the Augustinus Foundation.

Author contributions

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgements
  11. Funding
  12. Conflict of interest
  13. Author contributions
  14. References

HK, MK and VZ were responsible for the study conception and design. HK performed the data collection. HK, MK and VZ performed the data analysis. HK, MK and VZ were responsible for the drafting of the manuscript. HK, MK and VZ made critical revisions to the paper for important intellectual content. HK obtained funding. MK and VZ supervised the study.

References

  1. Top of page
  2. Abstract
  3. What is already known about this topic
  4. Introduction
  5. Background
  6. The study
  7. Findings
  8. Discussion
  9. Conclusion
  10. Acknowledgements
  11. Funding
  12. Conflict of interest
  13. Author contributions
  14. References
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