Non healing leg ulcers and the nurse–patient relationship. Part 2: the nurse’s perspective

Abstract

This paper focuses on the experiences of four community nursing teams responsible for the care of a small group of patients with leg ulcers who they had identified as ‘non healing’ and ‘non concordant’ with treatment. Four focus groups were held, one with each community nursing team, to examine the issues underpinning the labelling of these patients as ‘non healing’ and ‘non concordant’. There was an expectation that patients should obey treatment instructions and be positive and participative and there was a strongly felt link between concordance and healing of the ulcer. However, limited non concordance was considered to be acceptable as long as the patient continued to progress. Nurses viewed ulcer healing as the priority even though this was unlikely and differed from the patient’s priority of achieving comfort. Patient behaviour was an important determinant of labelling by nurses. Efforts by patients to exert some control over their own care were met with them being viewed as ‘difficult’, ‘uncooperative’ and ‘non compliant’. There was also a pervasive level of stress, distress and anxiety among the community nurse participants, which led to distancing and blaming that undermined the nurse–patient relationship. At the centre of a successful nurse–patient relationship is a non judgemental partnership that can often be challenging to achieve especially when ulcers fail to heal.

Introduction

This is the second of two articles. The first explored the experience of a small group of patients who, despite receiving ‘evidence‐based’ care within an integrated leg ulcer service, remained non healing. This second article focuses on the experiences of the community nursing teams who were responsible for their care and who had identified these patients as ‘non healing’ and ‘non concordant’ with treatment.

There are a number of studies that have sought to understand the patient experience of living with a leg ulcer 1, 2, 3, 4, 5. Even in this area, however, few have focused on patients who fail to heal. Perhaps surprisingly, studies of concordance have largely been carried out from the patient’s perspective alone, thus neglecting the significance of the relationship between patient and health care professional (6). In particular, little attention has been paid to the psychological impact these patients, and their often‐irresolvable clinical situation, may have on the nurses caring for them over a protracted period of time in the community.

Many factors impinge on the relationship between patients and professionals. A central aspect of this is the way in which professionals judge patients based on socially constructed criteria. These criteria include the patient’s motivation to get well, the kind of relationship that develops between the patient and the professional, the demographic characteristics of the patient and the perceived potential of the patient to be ‘difficult’(7).

Very little is known about how professionals view patients with non healing leg ulcers, although a number of studies have identified negative relationships between patients and professionals 2, 4. The concept of the ‘social ulcer’ characterises a pervasive belief among professionals that a proportion of patients do not want their ulcer to heal for fear of a lack of contact with professionals and thus, for many, social isolation (8). Although there is no conclusive research to support this view (9), it is likely that such perceptions have resulted in the labelling of patients, which has negatively influenced the care and management of this patient group 10, 11.

What appears to be important is that professionals tend to accept patients whom they believe they can help and who show the motivation to get well (7). For many professionals. such motivation to get well implies concordance with treatment as defined by professionals and to be passive, obedient recipients of such treatment (12). The issue of concordance is, however, a complex one (13) that does not always easily fit into the subjective, provider‐created definition of unacceptable behaviour (14). Despite challenges to this stereotypical categorisation of patients 15, 16, there is evidence that professionals continue to exert control over the patient–professional interaction and label patients who will not or cannot comply with therapy, as non concordant, deviant and irresponsible 17, 18.

Critically important to the nurse–patient relationship is the psychological impact that a non healing leg ulcer can have on the nurse as well as on the patient. It has long been recognised that professionals have problems containing anxiety generated by difficult practice situations that may be perceived as professional failure (19). A number of examples of defensive practice have been reported, such as routines, task orientation (19) and ritualistic dressing techniques (20).

Such practice serves to provide distance between the practitioner and the patient and attempts to tackle the dilemma that arises from a realisation that professional practice can fail to adequately deal with patient suffering (21). It is often too easy, as a consequence of this distancing, to label non healing patients as ‘difficult’ in order to deflect a sense of failure. Such distancing can be particularly potent within teams of nurses and the point is made (22) that there is less likely to be a sense of failure among individual nurses if all the members of the team agree that a patient is too difficult to help.

Materials and methods

Aim

The aim of this study was to explore community nurse perceptions of patients they had identified as non healing and non concordant with treatment. A particular focus was to illuminate how community nursing teams reach decisions regarding such patients in their care.

Design

It was important that nursing teams were provided with an opportunity that enabled them to feel able to explore difficult areas of professional practice that are often alluded to but rarely discussed. A focus group methodology was selected because it is a way of collecting data that capitalises on the interaction within a group (23). As such it allowed each nursing team to meet and discuss, elaborate, challenge and tease out previously ‘taken for granted’ assumptions regarding non healing and non concordance in identified patients in their care.

Participants

It was decided to use pre‐existing groups in order to facilitate access to ‘naturally occurring’ data in the social context in which ideas are generated and used to inform decisions (24). The pre‐existing groups were the four nursing teams responsible for the patients identified as non healing and non concordant, with each team forming a focus group. The use of existing groups would also provide a level of familiarity and security that would help discussion of sensitive issues and areas that might under normal circumstances be taboo (25).

The focus groups

Each focus group was held in the health centre where that nursing team was based and took place over a lunchtime period. This was a pragmatic decision to fit in with the team’s work schedule. Recruitment to the focus groups was arranged through each of the four team leaders with written information about the study and the focus group being provided. All nurses who were invited to participate agreed to do so.

The number of participants attending each focus group ranged from three to seven. Although the recommended number per group is usually six to eight, opinion is divided (26). Successful focus group research has been achieved with as few as three and as many as fourteen 26, 27. The time taken for each focus group ranged from 60 to 90 minutes and, following a full verbal explanation of the purpose and aims of the research, the format of the focus group and that the discussion would be treated with strict confidentiality, each participant was asked to provide written consent. Anyone who wished to withdraw was given the opportunity at this point and in the event no one chose to exercise this option. Each focus group was moderated by two researchers, one facilitating the discussion and the second operating the audiotape recorder and taking notes of the exchanges, dynamics and interactions within the group. Both researchers were nurses with considerable experience in the field of leg ulceration and were known to the majority of participants. Concerns about how this might influence and possibly constrain responses reinforced the decision to use pre‐existing groups in which participants felt relatively secure and familiar. The focus group consisted of two stages, a focussing exercise and a discussion.

Stage 1: the focussing exercise

A focussing exercise was undertaken at the beginning of each focus group. As its name suggests focussing exercises are intended to concentrate the group’s attention on the research topic and seek to illuminate the assumptions that underpin individual and group beliefs on a topic area (24). A focussing question was posed: ‘What does the term concordance mean to you in relation to patients with leg ulcers?’ Each group was asked to brainstorm issues that arose when considering the question and responses were recorded on a flip chart. Participants then rated each item and selected what for them were the three most important. An overall group rating was then calculated and the results presented as a case matrix to allow comparison of responses between the four groups.

Stage 2: the discussion

The second stage sought to extend the discussion on concordance. In order to understand more about the dynamics between the patients and nursing teams, they were asked to explore a specific event, using critical incident technique (28). This approach helped to highlight the key issues that had resulted in individual patients being labelled as ‘non healing’ and ‘non concordant’ with treatment.

The discussion was moderated so that the group explored the assumptions that underpinned this labelling. This was achieved by returning to the issues raised during the focussing exercise. The principal aim was to illuminate attitudes, feelings and behaviour rather than describing a specific event and therefore, much of the discussion concerned professional attitudes to ‘non–concordant’ behaviour in their patients. This was particularly important in order to determine how these attitudes impacted on the nurse–patient relationship.

Ethical considerations

Ethical approval was granted by the local research ethics committee. In order to comply with National Health Service research governance guidelines, the study was registered with the trust research office and research and development approval was obtained. Permission to conduct the research was obtained from trust managers and district nurse locality managers. Team leaders and all district nurses were informed about the study.

Analysis

The audiotapes of each focus group were transcribed verbatim. All focus group data were checked by listening to the tapes in comparison with the written notes made by the second moderator. Particular note was made when more than one person spoke, or when sentences were left unfinished. Transcriptions were also compared with the written notes to verify accuracy, tone, emphasis and group dynamic.

The data were analysed using content analysis by which data were categorised and coded and dominant themes identified (29). In addition to coding of the entire text, the focus group data were reduced into individual vignettes that were checked by the second moderator to ensure that the essence of the reduced data was maintained. These were then compared later with the full text during examination of the cases, using a case comparison matrix, which allowed for similarities and differences to be detected in the attitudes, feelings and professional responses to these patients (29). Questions informing the analysis at this stage included: what were people saying? What were people feeling? What was really important? What was influencing the reactions in the group? How do the emerging themes compare across the groups?

Results

As outlined above, the first part of each focus group involved a focussing exercise in which aspects of concordance were brainstormed and written on a ‘flip‐chart’. Each participant was asked to rate each item in order of priority and then a group rating was calculated that identified the top three most significant issues for each group. The results from this exercise are presented as a case matrix in Table 1.

Table 1.

Issues identified in response to the question ‘What does concordance mean to you in relation to patients with leg ulcers?’ (First 3 items rated by each team as the most significant issues)

Focus group 1	Focus group 2	Focus group 3	Focus group 4
The ‘classic’ patient	Confident relationship with patient	Non concordance = non healing	People positive about treatment
Find the reasons for non concordant behaviour?	Adhere to prescribed treatment	Take advice about treatment	Patient understands their condition
Mental instability	Lack of patient knowledge and understanding	Do as they are told	Quicker healing with concordance
Other issues raised
Follow prescribed regime	Leaving bandages alone	Participate in treatment	Do what you say
Keeping to professional instructions	Elevating legs	Health promotion important	Treatment agrees with ulcer
Waste of time	Difficult patients	Do not take dressings off	Would not make lifestyle change
Allergic skin reactions	Does not like change	Do not pick the wound	Increased dependence
Frustration	Lack of understanding	Take prescribed medication	Concordance feels great
Non concordance means they will not heal	Poor understanding of treatment effects	Frustrating	General health problems
Strict ground rules or I discharge them	Body image issues	Waste of time	Look beyond the ulcer
Hopeless, do not know what to do	Fed up with treatment	Feel a failure	Pain from bandages
Not getting anywhere	Taking too long to heal	Angry with patient
	Continuity of care	Undermined professional role

During this exercise, each focus group, without exception, chose to discuss issues related to ‘non concordance’ in patients with leg ulceration even though the focussing question asked what the term ‘concordance’ meant to them. The labelling of patients in this way seemed to allow for the use of a generalised ‘common’ language of comparison, rather than a discussion of individual patients and their specific problems.

In retrospect it became clear to the researchers that the focus groups appeared to act as a cathartic experience for the participants and there was an implicit expectation that this research would lead to recommendations and practical help aimed at enabling them to cope with patients they described as ‘difficult’ and emotionally draining. The focussing exercise generated many issues that later emerged during the discussion phase of the focus groups and three major themes emerged from these discussions. These were: Do as they’re told, basically, in a nutshell; non concordance = non healing and patients or labels?

‘Do as they’re told, basically, in a nutshell’

There was an expectation by participants that patients should obey treatment instructions and be positive and participative towards their care and management, even in the absence of progress. It was clear that patients who erred outside accepted norms of behaviour, which tended to be implicit and taken for granted rather than explicit and questioned, were likely to be dealt with punitively.

There have been times when I’m very strict with them and said look, if you‘re not going to comply, you can go to the practice nurse. I discharge them, with the GP’s permission of course. And then they come back, and they promise to do everything you want them to do! (Laughter) And the ulcer heals (team leader).

This apparently harsh attitude can be compared with a later description, by the same nurse, of the bewilderment associated with being unable to prevent deterioration in a young patient. Here she refers to the development of coping strategies that allowed a degree of detachment from the reality of the situation and acknowledges changes within herself, which she described as becoming the ‘iron maiden’.

I feel very bad, very sorry for her. Feeling sorry is one thing, but I have to say this is all I can offer. It’s hard, so I consciously tell myself, as long as we can maintain her legs……. I find as long as we can maintain the situation, and it doesn’t get worse, I can live with it. There was a time when I couldn’t have lived with it but I’ve moved on and become a bit of an “iron maiden” (team leader).

The disassociation of painful emotions alluded to here appears to act as a defence that helps to protect the nurse from the overwhelming anxiety and fear felt when caring for a patient who was suffering acutely. While such defences may be protective for the nurse, they can become embedded in rituals of practice (19) that are detrimental to both patient and nurse and the humanity of the caring situation can be lost, a humanity that can still be glimpsed here:

You know looking at the whole situation; I began to feel for her a little. Something moved inside me. I felt for her, although you are told not to get emotionally involved with these patients, I think it is impossible in that situation (community staff nurse).

Non compliance = non healing

Participants frequently blamed patients for their failure to heal. Reasons put forward included interference with bandages and dressings as well as more peripheral issues such as failing to lose weight or non participation in health promotion programmes. Almost universally across all focus groups, non concordance was equated with failure to heal.

They defy the objective. Your objective is to get the patient better, and if they’re not going to comply they are not going to get better (community staff nurse).

Of particular interest is that patients who exhibited non concordant behaviour but who never the less continued to make progress did not generate the same level of anxiety in participants. Generally speaking, community nurses tolerated non concordance as long as healing and progression was evident.

I know my bandaging technique, and I know when he’s interfered with it. I really don’t know why he does it. He always denies it. Well, regardless of him having done that I’ve always seen some positive change in the ulcer, so although I tackle him about it I don‘t panic about it (district nurse).

Patients or labels?

Various labels were used to describe these patients, including ‘difficult’ and ‘negative’. During the discussion over concordance issues, there was little mention of patients making informed decisions about their care, which nurses would respect and endorse. Patients who attempted to claim some control over their care were viewed as being in some way deviant and contributing to their ulcer remaining open.

You can just put ‘negative’ that will cover it for all non‐compliant patients. I hate this word, but I’m going to use it, I think her problem seems to be complete negativity, and it undermines the physical aspects of well‐being, and you know we can’t deal with that. We’re not psychiatrists, we’re not marriage guidance counsellors, we’re not psychologists, we may have an understanding of those issues at the edge, but that’s not what we’re here for, we’re here to treat the leg ulcer. We don’t have the resources to be able to deal with the emotional side of things and it is continually undermining the aspects of care we are trying to promote (community staff nurse).

This perspective raises serious questions about how nurses view their role in caring for patients generally and patients with non healing leg ulcers, in particular. Clearly, the emphasis here is on the leg ulcer rather than the patient as a whole person. It also suggests that nurses are often ill equipped to deal with the complexity of emotional issues that patients often face. The distress expressed by this participant also highlights the lack of support available to nurses who are dealing with continuously stressful situations. Nowhere is this likely to be more acute than in a community setting where patients may remain on community nursing case loads for decades. Participants described the need to ‘share the misery’ and talked of their fear of being overwhelmed by the emotional impact of caring.

We had to sort of share the misery among the team; otherwise you end up getting depressed yourself. It was an ordeal. You spend an hour with the patient and it is such an ordeal (community staff nurse).

There was evidence that the role of the specialist leg ulcer nurse was complex. Frequently she was used to endorse the decisions made by the nursing teams, and to provide reassurance that every possible aspect had been considered. However, there was also evidence that practitioners felt undermined by her role, particularly with patients who expressed particular trust in her decisions and specifically requested her intervention. One team leader feared that this was a reflection upon her and her team and that patients believed they did not have the knowledge and skill required to treat the ulceration effectively.

Participants were aware of when a patient had already been labelled and often accepted it, thus anticipating that the patient would be problematic. There was also evidence that labelling extended well beyond the community nursing teams to hospital units and general practitioners.

I always knew she was non‐compliant and had self‐inflicted wounds. She was labelled that by others, I read it. So before I clapped eyes on her I knew that. So I suppose I looked at her as a bit of a bother (team leader).

She’s been labelled. The whole of the hospital knows about it, and even the GP says to us things like, she’s costing him one tenth of his total budget (community staff nurse).

The same team frequently showed great understanding of the suffering of this particular patient who had a long and complex history of unhealed leg ulcers and deteriorating general health because of comorbidity. Strenuous efforts were made to continue the highest quality of care despite conflict over resourcing in an ever more stretched community service. Accepting the continuing deterioration of this patient was extremely painful for this team.

You don’t seem to be getting anywhere no matter what you do. I mean ideally she wants you to go every day, but with the constraints on your time and your staff, you can’t do it, and you know she probably needs it. That’s the frustration. — I don’t understand it. Nobody can give me a sensible answer, so what are we doing you know? I’m frustrated, what will be the outcome. Why? What is going on? Nobody can give me an answer (team leader).

I think it’s quite discouraging, personally for me. To realise that with all your effort the leg is not improving. When you go there it gets worse you feel discouraged somehow (community staff nurse).

I feel hopeless, because we are not making progress, feeling awful that you can’t do anything, we try our best (community staff nurse).

Across all focus groups, participants frequently described a sense of impotence when they could not provide the care they felt the patient needed. Hospital admission was viewed as an opportunity to ‘sort‐out’ the patient and arguably, as respite for the community nurses facing the daily struggle and distress of failing treatment.

I would class him as non‐compliant because several times we said, look this really ought to be checked at the hospital, but straightway there’s resistance. Maybe if he went in, they would sort him out a bit, but he’s adamant he won’t go, it would help us a lot but he won’t go, what can you do? (team leader).

Discussion

The focus groups show not only the complex issues concerning the management of patients with leg ulcers who are viewed as non concordant and non healing but also a range of conflicting emotions and feelings experienced by community nurses. These emotions range from anger, frustration and despair, guilt and distress, to a deep desire to help and provide the best care possible for their patients. This conflict dominates the data and its source is complex but can be traced to the fundamental difference in aims and expected outcomes between patient and nurse.

The difference in the aim of care and management has its focus in the goal of treatment, namely the healing of the ulcer. Despite the long history of healing problems shared by the patients, for the nurse, a healed ulcer remained the clear aim of treatment, whereas for the patient, achieving comfort was the most important outcome. According to Husband (30), such a clash of expectations can lead to a serious but often unrecognised conflict of focus between the nurse and the patient. In many ways, Husband’s findings reflect those of this study in which there is frustration for the nurse because of failure to achieve healing and for the patient there is a feeling of impotence as their self‐care potential is compromised resulting in the nurse–patient relationship being undermined.

The labelling of patients was common among all the nursing teams. There was a strong belief that patients should ‘obey’ treatment instructions if their ulcer was to heal. That the patients in this study had ulcers that had failed to heal attracted the inference that they were in some way non concordant with treatment. This is of interest because a recent study found no evidence of a correlation between professional descriptions of concordance and ulcer healing (31). Commenting on Moffatt’s study, Mandal (6) argues that such findings suggest that professionals either exaggerate the role of concordance in this patient group or non healing is attributed to patient behaviours considered to be non concordant.

Patient behaviour was an important determinant of labelling by nurses. The data reveal that efforts by patients to exert some control over their own care were usually met with punitive action by nurses and associated labels such as ‘difficult’, ‘uncooperative’ and ‘non compliant’. However, of particular interest is that non concordance was, in certain circumstances, acceptable as long as the patient continued to progress. In this respect, the label of non concordant was socially constructed and tended to reflect nurse attitudes, and biases, towards perceived personality traits of their patients such as being difficult or awkward or obstructive. Research has shown, however, that personality traits do not influence concordance (32). This is important because such a simplistic understanding of the complexity of concordance overlooks the full combination of influences that can affect this key aspect of the nurse–patient relationship. Price and Moffatt (33) make the point that concordance is a complex combination of not only patient characteristics and illness characteristics but also of practitioner characteristics.

Practitioner characteristics are clearly important and highlight how the nurses in this study regarded their role in the care and management of their patients and the expectations they had of themselves and their colleagues. The issue of non concordance represents many unresolved issues within professional practice, including relinquishing control to patients and learning to cope with the consequences of perceived professional failure. The effects of continuously dealing with emotionally distressed patients appeared to have an overwhelming effect on the nursing teams. The focus groups showed a pervasive level of stress, distress and anxiety among the community nurse participants. They speak of ‘sharing the misery’ and of ‘being overwhelmed by the emotional impact of caring’. Such levels of distress and anxiety can lead to the adoption of defensive behaviours (6), for example, distancing, blaming and labelling, and the resulting challenge to the nurse–patient relationship that will almost inevitably occur.

Conclusion

The community nurse accounts given here emanate from four focus groups with teams of community nurses who had identified a small number of patients as non healing and non concordant. The findings must be viewed with caution as they represent the views and experiences of a relatively small group of community nurses in one Primary Care Trust. This is the story of embattled community nurses working with ever reducing resources in which their apparent failure to make a difference to the lives of their patients was deeply felt. There is a great deal to be learnt from the experience of the community nurses in this study. Not least the dangers of labelling patients, the central role of communication between patient and nurse particularly regarding the aims of management and finally, the importance of recognising the expertise and knowledge of patients. The findings of this study serve as a reminder that at the centre of a successful nurse–patient relationship is the development of a non judgemental partnership and an understanding that this will sometimes seem impossible will often be challenging and always fulfilling.