A Lesson to Learn – Patients’ Critiques of Diabetes Nursing
Hörnsten, U Graneheim
Keywords
adherence, diabetes, disease perspective, illness perspective, paternalism, patient centredness
Citation
Hörnsten, U Graneheim. A Lesson to Learn – Patients’ Critiques of Diabetes Nursing. The Internet Journal of Advanced Nursing Practice. 2009 Volume 11 Number 1.
Abstract
Background
In Sweden, patients with type 2 diabetes are treated by general practitioners (GPs) and diabetes specialty nurses working in primary health care at local health care centres. Recommended diabetes care consists of an annual visit to a GP, who evaluates present laboratory measurements and adjusts medical treatment according to evidence-based recommendations in national guidelines. Semi-annually patients are offered an appointment to a specially educated diabetes nurse, who focuses on supporting lifestyle changes and patient education. 1
Swedish national guidelines follows international guidelines, where effective self-management including lifestyle modification is explicitly defined as a cornerstone in type 2 diabetes treatment.2 Lifestyle modification includes: 1) regular eating habits, consisting of a diet that is ‘low and slow’ in carbohydrate content, rich in fibre, and low in fats – particularly saturated fats, and 2) physical activity, preferably 30 minutes per day. When required, treatment with per oral blood glucose lowering agents and/or insulin is prescribed.3
Traditional patient education consisting of self management training in diabetes has not been shown to effect longer-term metabolic improvements.4 Individual face-to-face self management training has been evaluated less effective than group education.5, 6,7 Patients undergoing such education gain more knowledge about the disease, including its risks and treatments. They are advised about lifestyle changes, but they may not change. Although improving patients’ knowledge about diabetes is generally viewed as vitally important to their ability to self-manage, this view is challenged, and not supported by the evidence. Why patient education is ineffective in long-term lifestyle change is not clear, but many researchers are critical of the use of outdated teaching methods.7, 8, 9 Health professionals also seem hesitant to introduce new patient-centred methods based on concepts such as empowerment.10
Patients’ and professionals’ various and sometimes divergent perspectives on illness and motives for self-management have been studied by anthropologists11, philosophers12, physicians13, sociologists14, and nurses15. Such literature reveal that the professional perspective on disease is based on a medical model, which is concerned with comparisons to the ‘normal’ non-diseased body and disease is a deviation from a natural state or from statistical norms, independent of particular experiences or circumstances. Treatment is primarily used to restore the natural order. Illness from the patient’s perspective, on the other hand, is the social experience of a dynamic process in which ill people, their families, and their social networks perceive, live with, and respond to symptoms and treatment. This perspective is subjective and focuses on what people experience, do, and feel while they are ill, all of which strongly affect self-management and treatment compliance.12, 15
Patient-centredness is vital for achieving patient satisfaction with care, and many patients do not experience diabetes care as satisfactory. The concept patient centredness is not a unitary concept, but the aspects communication skills, matching of beliefs, agreed treatment plans, autonomous patients and patient empowerment are often included in definitions of patient centredness.16 Mead, in her studies of patient centredness in the physician-doctor relationship, identified that a biopsychosocial perspective included shared power and responsibility, a therapeutic alliance/partnership, and that the physicians acted more like individuals.17 Mitchie et al., in a review of 30 studies on health communication in chronic illness, identified two styles in patient centred consultations labelled “patient perspective style” and “patient activation style”.16 Patient perspective included the ability to elicit and discuss patients’ beliefs and patient activation the ability to activate patients to take control in the consultation and in management of their illness. Both styles were similarly associated with patient adherence but patient activation was more strongly associated with better physical outcome.
Among diabetes patients, Hörnsten et al. found that factors associated with patient satisfaction with clinical encounters in diabetes care in general were: being in agreement with the professional about the goals, being autonomous and equal, feeling worthy as a person, being attended to and welcome, and feeling safe and confident.18 On the other hand, interviews with diabetes specialty nurses disclosed a complex professional role, where implementing guidelines could conflict with being patient-centred. 9Nurses viewed medical knowledge as more important than the lived experience of diabetes, and felt more comfortable in an expert role than in equal and mutual relationships with patients.
Most nurses sincerely wish the best for their patients and express frustration when patients do not follow their counseling. The hypothesis for this study was that the ineffectiveness of diabetes patient education and the dissatisfaction many patients express about diabetes care have to do with health professionals’ and patients’ diverging perspectives on illness and treatment. A critique of diabetes specialty nursing from a patient perspective is essential to bridge gaps between nurses and patients and their understandings of possibly divergent treatment goals.
Aim
The aim of this study was to describe what patients with type 2 diabetes view as most important for diabetes specialty nurses to learn about receiving care for diabetes.
Method
Sampling
Swedish-speaking patients diagnosed with type 2 diabetes within two years were randomly selected from two years’ electronic medical records at four health care centres. Patients were contacted by letter and telephone and informed of, and invited to participate in an interview prior to an educational intervention consisting of a patient-centred support group led by the first author. A total of 44 patients (21 women, 23 men; age range 47–80 years) were enrolled. The results of the intervention are reported elsewhere (19). The project was approved by the regional ethics committee (Dno 00-323).
Interviews
The interviews were narrative in nature 20 and lasted between 45-90 minutes. Interviews were performed in the participants’ homes with exception of three interviews performed in an office at their work places. All interviews were recorded and transcribed verbatim. The interviewer (first author) introduced herself as a diabetes specialty nurse working on a research project focusing on personal models of illness. The interviewer was not known to the participants before the study, and the participants were assured that their regular diabetes specialty nurse would not be able to identify their narratives. The interview focused on the two themes personal understandings of living with diabetes and receiving care for diabetes. This paper reports results from a secondary analysis of the second part of the interview, which began with the request, ‘Please tell me what you consider to be the most important thing I need to learn from you about diabetes nursing care’. The researcher actively listened and probed with comments such as, ‘Interesting, could you develop that a little bit more?’ This part of the interview was about one-third of the total interview time.
Analysis
The texts were analysed using qualitative content analysis.21, 22 According to Krippendorff, 21a text never implies one single meaning, just a probable meaning from a particular perspective, which in this paper deals with patients’ experiences interpreted by nursing researchers. Initially, the whole interviews were read through by the authors; units of analysis were identified, and any text not congruent with the aim of this study was removed from analysis. The remaining text was read again and meaning units were identified, condensed, and coded. Condensing the text is a process of removing unimportant words in order to clarify the message, making the text shorter - yet, still preserving its core. The condensed meaning units were interpreted and labelled with short codes. These codes were then compared, and similarities and dissimilarities were identified and the codes were sorted into categories and subcategories, labelled with short sentences. Categories and identified themes permeating the categories were then validated in the original text. To achieve trustworthiness, the authors, throughout the analysis, discussed and reflected about preliminary interpretations until consensus was reached.
Findings
Three themes representing what diabetes specialty nurses should learn were identified, and they corresponded to aspects of traditional diabetes nursing; i.e., the one-sided disease perspective, high compliance expectations, and paternalistic attitude. The findings are presented in the Table 1 and in the text below, with illustrative quotations as examples.
Figure 1
Not making a mountain out of a molehill
Patients said that diabetes specialty nurses, when discussing the disease, often made a mountain out of a molehill. Overemphasizing diabetes’ severity or laying too much stress on the influence of lifestyle changes were experienced as negative, and patients felt they were put in an awkward situation by being asked to do the impossible. However, patients differed in the assumptions that informed their perceptions. For those who viewed diabetes as trivial, nurses’ emphasis on the disease perspective was mistimed, because the patients were neither prepared nor willing to take their diabetes seriously. For others who viewed living with diabetes as if their days were numbered, emphasis on the disease perspective, particularly on the severity of diabetes, increased their stress and sometimes made them feel powerless to act.
Most patients, though, viewed diabetes as something insignificant, often saying the condition was ‘normal with age’, ‘natural’, or something that ‘runs in the family’. Diabetes was hardly experienced as a disease, since they did not feel it and the condition was invisible. Many stated that diabetes was nothing serious, that they had no problems and no suffering related to living with the condition. Diabetes was easy to manage, simple, and only one of many other diseases:
“I know that I have somewhat increased [blood sugar], but I cannot say that I feel it … It is rather similar to what they used to call the coffee shakes”.
“I think I am lucky. From what you say it sounds like it is damn dead dangerous”!
What patients thought diabetes specialty nurses should learn was to let people stay in this mode of minimising the disease until they are ready to be confronted with the risks. An advantage for them was to tone down the seriousness in order to stay feeling well. Among some people this attitude was part of a gradual acceptance of the diagnosis. People did not immediately accept a diagnosis they were unprepared for.
A few patients expressed feelings of hopelessness, sorrow, and great fear related to the severity of diabetes. They described blindness, amputation, and becoming dependent on others as very limiting outcomes that would entail great suffering for them, in phrases such as ‘damned dramatic’, ‘scary’, ‘a step towards the end’, and ‘close to death’.
“It [the diagnosis] was a definite step towards the end; you have nothing to look forward to”.
“This is a great interference in my life … but it is very constructive that you [the researcher] bother to ask me how I experience the situation – if I can stand it at all”.
These patients thought that diabetes specialty nurses, despite their disease perspective, should not only inform patients about risks and complications, but also focus more on helping people to see possibilities and find some hope.
The more routine, the less life
The participants described how they experienced the explicit expectation that they would create routines for a healthier life. Such routines concerned every moment of the day, from breakfast to supper, in working life and leisure time, among relatives and friends, and alone. All patients said that they preferred to live in the present, while at various levels their struggles with a lifelong involuntary adaptation of lifestyle and routines made their lives poorer, greyer, and duller. Patients described how they were given advice to change their lifestyles and were expected to comply, even if they lacked motivation to change. Many patients said that they tried to live as normally as possible in the present, while others struggled greatly with negotiations about demands for change.
Living in the present meant that the patients wanted to enjoy life now and wished to handle problems when they arose; they did not want to dwell on future risks. A long life and a healthy future were not important goals. Sometimes they could not find the strength to adapt to this new situation and the demands for self-management. Those patients said they avoided telling others about their illness or their choice to live in the present, because they did not want to be regarded as irresponsible:
“I don’t give a damn if I live ten years more or less … you have to use the time left as well as possible”.
“I know that diabetes is not harmless, but I have not thought that far ahead, because then I cannot manage the situation … you must give us hope”.
Struggling with the demands for lifestyle changes meant staying with routines, which was a sacrifice. Patients had to give up ‘the gilt edge in life’ and lost pleasure. Managing self care was very trying and the patients felt abandoned. Despite tiredness or lack of time they experienced that they had to behave well according to all the advice. They were expected to create and maintain routines that intruded on their daily lives, and to simultaneously be prepared to cope with any changes to their routines, which was very difficult. Participants described how it took time to get used to new habits and an altered life, and their struggles could be seen as non-compliance by the nurses.
“To live with diabetes in reality, it is to adjust oneself to the disease, and that is not fun at all, since diabetes is the master of my life and I am not”.
“The most difficult [thing] is that you cannot eat as you wish – no ice cream with sprinkles and no white bread. Despite what you tell me about it, I eat some of it sometimes, without leave”.
What the participants wanted diabetes nurses to rethink about their non-compliance was that nurses’ often well-meant advice is very limiting and has great influence on patients’ wellbeing. Participants also wanted nurses to remember that lifestyle changes are not easy to make or maintain, particularly over time. Sometimes, when patients lack the strength to alter their life, they want hope and consolation instead of more advice and disapproval.
To err is human
The participants described how they experienced a kind of depreciation in their encounters with nurses, particularly when they failed. Being objectified as a diabetic instead of seen as a person is humiliating; participants expressed their need to be acknowledged and respected as a people and not devalued and accused as diabetics, who ‘get what they deserve’. Phrases such as ‘human being’, ‘fellow’, ‘autonomy’, and ‘free choice’ were frequently used when participants described how they wished to be treated, indicating feelings of violation. Being acknowledged as a person meant being seen as the person one was before the diabetes diagnosis – free and autonomous – but even wiser (with new experiences) than before. A person who is seen as a fellow human being and an equal is taken seriously and gets honest answers, objective information, and straight feedback. This person, a human being, makes right and wrong choices, but learns from mistakes. Paternalistic attitudes do not fit an equal relationship; nurses instead need to show their patients respect.
“It’s meaningless to use pointers and tell me what to do or not or persuade me into something I don’t want. Instead I believe in neutral, objective information”.
“You learn from your mistakes. When you eat something you feel sick from, then you learn more about your body, and in the future you avoid it”.
Patients viewed as persons are seen in their social contexts, with particular routines and problems, and their motivations for change must be found within their real circumstances. Furthermore, patients viewed as persons are seen as parties who are consulted and discussed with, not as entities that do or do not comply with imposed solutions. When caring for a person–not ‘a diabetic’–that person’s own values and routines must be in focus, and forgiveness and support must be offered, particularly when the person is struggling.
Being objectified, seen only as a diabetic, was experienced as devaluing; participants often felt accused and forced to take a defensive position. Expressions of stigmatisation, such as ‘feeling dirty’, ‘being branded’, and ‘having a nasty disease’, were frequent, as were feelings of guilt, mentioned frequently in terms of ‘being a bad person’, ‘own fault’, and ‘having a guilty conscience’. Feeling devalued was expressed as ‘being trampled on’, ‘being forced and persuaded’, or being seen as a ‘misbehaving child’.
“The most difficult thing is when you [nurses] are harping on about my eating habits and say that you can eat everything but just a small piece. Then I feel that it is not my choice, it’s theirs, and if I comply with it, I have already lost”.
“It may not be advice that I need at the time. Instead she [the nurse] could accept me as the human being I am, despite my diseases. That is what I consider is important, not to trample on each other, because it is sickening”.
The patients suggested that diabetes specialty nurses should rethink their somewhat paternalistic attitude in counselling and not stigmatise, accuse, or devalue patients. Advice, often experienced as nagging with an overwhelmingly paternalistic focus on the ‘bad patient’ persisting with a risky behaviour, rarely suited the person well and was not what was needed at the time.
Discussion
The findings highlight the importance of improving diabetes specialty nursing and becoming more patient centred. Being too disease focused, expecting adherence, and having somewhat paternalistic attitudes are not synonymous with patient centredness in diabetes care. Instead, nurses are requested to take the themes ‘not making a mountain out of a molehill’, ‘the more routine, the less life’, and ‘to err is human’ into account when providing diabetes care.
Many nurses may feel provoked by findings indicating a need for a changed attitude among them. However, this article describes what patients consider that diabetes specialty nurses can learn from them. Diabetes nursing is special because the basic treatment is a healthy lifestyle, which is performed by the patients themselves. Thus, the role of diabetes specialty nurses becomes complex, because although they should promote a healthy lifestyle for patients, outcomes are measured and evaluated by testing patients’ metabolic balance.23 Nurses’ success is therefore evaluated by patients’ success in a complicated process with many potential biases. Important to remember though is that living with diabetes is also very complex and the self management need to be integrated over time in a complicated process.24 Nurses have traditionally been educated to play an expert role in diabetes care. In Sweden, diabetes care and education has focused on improving metabolic balance in order to reduce diabetes-related complications. Lower limits and improved values have been the catchwords for many years. Nurses’ case load burden is another explanation for giving lower priority to health promotion. Swedish diabetes nurses are most often responsible for district nursing in addition to their responsibility for diabetes care. These nurses must often choose between giving care to acutely ill people who need immediate attention, and promoting health as a means of secondary prevention. Health promotion may have been given lower priority at any particular time.
Untreated diabetes, however, leads to complications from which patients will suffer greatly, as we have learnt from studies such as the United Kingdom Prospective Diabetes Study Group.25 Being focused on the prevention of complications through striving to regulate diabetes is good; the problem or the challenge is to ensure that patients know they are partners; otherwise both nurses and patients will lose.
Core values of nursing such as consoling, relieving, healing, and relating may not have been given enough priority, or have been replaced with goal-oriented values such as treating, curing, and being effective. Benzing stated that modern medical care is influenced by two paradigms: ‘evidence-based medicine’ (EBM), and ‘patient-centred medicine’ (PCM).26 EBM has a positivistic, biomedical perspective focusing on the best available evidence for treatment, where medicine is a strictly cognitive-rational enterprise. With this approach, the uniqueness of patients and their individual needs, preferences, and emotional states are easily neglected. PCM, on the other hand, is based on a humanistic, bio-psychosocial perspective. This perspective has gained renewed attention since it combines ethical values with psychotherapeutic theories on facilitating patients’ disclosure of worries and negotiation theories on decision making, instead of focusing on expectations of compliance.
From these authors’ perspective, patient adherence and compliance are interchangeable concepts. Patient compliance has traditionally been a goal in medicine and nursing, in this case focusing on nurses’ roles in improving patient compliance and acceptance of diagnosis, as well as prescribing treatment. Research has historically focused on non-compliance as a problem in need of a nursing solution and on identifying the important roles nurses have in effecting compliance among disobedient patients.27 Thorne28 has defined patients’ non-compliance as a conscious and reasoned decision not to adhere to professional advice, which differs considerably from the traditional interpretation of compliance and non-compliance. Playle and Keeley stated that patients’ non-compliant behaviour from a professional perspective is seen as problematic, since non-compliance contravenes professional beliefs, norms, and expectations about ‘proper’ roles of patients and professionals.29 An ideology viewing patients as passive recipients of health care has been developed over many years, which may explain tendencies of blame and even paternalism towards non-compliant patients. Though, the view of the concept adherence has possibly changed from what used to be a medical ideology to now a more fluid and versatile view, where both people with diabetes and the diabetes team embrace to achieve a common goal.
Zomorodi and Foley clarified the thin line between advocacy and paternalism in nursing.30 A review of the concept of advocacy reveals several definitions such as helping people to do what they ordinarily do for themselves to maintain health; ensuring the welfare of other human beings; helping individuals to clarify their values in decision making; or informing and supporting patients in decision making. The concept of paternalism is reviewed and defined as the intentional overriding of one person’s known preferences or denying the patient’s preferences, decisions, or actions out of concern for patients’ wellbeing. ‘Harm paternalism’ is intended to prevent individuals from self-harm; ‘benefit paternalism’ is based on the ethical principle of beneficence, by which something good is performed that otherwise would not have occurred.30 Patients in this study felt at times that when they erred they were treated as children and they felt devalued. It is plausible to interpret this as a manifestation of paternalism.
Zoffman and Kirkevold have studied interactions between health care providers and diabetes patients with poor glycemic control.31 Keeping life and disease separate was identified as a core category, which involved a pattern of conflicts both between and within patients and health professionals and disempowered patients in problem solving. A compliance-expecting approach is associated with continuing conflict, as did a failure-expecting approach, while a mutuality-expecting approach appeared to neutralize the conflict. The patients in this study described very similar patterns. A mutuality-expecting approach is desirable, where patients with diabetes are respected as persons striving towards the same goals as the professionals, with support available if needed. Russell et al. also argued for a patient-centred approach, where power and authority is transferred away from health-care professionals and towards patients by focusing on how health-care treatments affect patients’ lives, not merely their health. 32
Paterson, in a meta-analysis, provides an explanation of patients’ variations in their attention to symptoms over time, sometimes in ways that seem ill-advised or even harmful to their health.33 The Shifting Perspectives Model of Chronic Illness indicates that living with chronic illness is an ongoing and continually shifting process in which an illness-in-the-foreground or wellness-in-the-foreground perspective has specific functions in a chronically ill person’s world.33 People most often strive for a wellness-in-the-foreground perspective where illness is set apart. However, a paradox emerges; i.e., in order to stay well, people must handle their symptoms, and so focus on their illness. This paradox implies that people will strive for self-management of their illness over time. Unfortunately, health professionals may interrupt this process with their somewhat negative attitudes to patients that do not adhere to their recommendations and their efforts to preserve control and power.
In contrast to the findings of this study, Edwall et al., describing the lived experience of regular diabetes nurse specialist check-ups among type 2 diabetes patients, found an overall positive attitude.34 The check-ups influenced patients living with diabetes positively, by underpinning and developing understanding and management of daily life. An interlinked chain of the elements ‘being confirmed’, ‘being guided within the disease process’, and ‘becoming confident, independent, and relieved’ influenced them in a positive way. One difference between the two studies was that Edwall’s et al. participant sampling was purposive, while this study had a randomised design. A purposive sampling may entail bias; i.e., those patients whom are known best and who are most interesting for studies are asked to participate. The questions used are another difference. Edwall et al. asked for narrations about experiences of regular checkups and the impact of those on the participants’ lives. These authors asked the patients to tell what they thought were important to learn from their perspective. Many patients were surprised and said initially that they had nothing to teach. After probing and explanations about the study’s purpose to learn more from a life-world perspective about being cared for, they became more willing to talk. Participants were also guaranteed that their stories would not reach their diabetes specialty nurses. Also, the question was limited and implied a focus on problematic, rather than successful, communication. Participants were not asked to tell what they thought the investigators already knew or to discuss anything that they found effective or beneficial. Likely is that they were satisfied with several aspects of their nursing care, but the investigators did not ask them about that. Asking people about what could be learned from them offers opportunities for positive change.
Implications for Practice
What diabetes nurses can learn, from a patient perspective, is to support self-management by pointing out possibilities, inducing hope, and consoling instead of expecting compliance and acting in a way that patients could experience as paternalistic. Patient centredness, which includes core values of nursing such as focusing on each patient’s uniqueness, individual needs, preferences, and emotions, is requested. Paternalism is a delicate subject, and many nurses may be upset to learn that some patients experience diabetes nursing as paternalistic. However, if healthcare providers do not recognize such attitudes within themselves and their professional roles, it is even more important to discuss them. Michie et al. pronounced that patient centred communication stimulates people to improve their health and is positively affecting patients’ self efficacy and motivation.16 Patients’ own awareness about individual circumstances is the key issue for a partnership in care planning and which addresses patient’s health risk behaviours more directly than advice given by the nurse in a consultation based upon high expectations on adherence and some level of paternalism.
Conclusion
The three themes: ‘not making a mountain out of a molehill’, ‘the more routine, the less life’, and ‘to err is human’ describe what diabetes nurses at all levels can learn from a patient perspective about having diabetes and receiving care. The themes correspond to a criticism of somewhat traditional aspects of diabetes nursing: a one-sided disease perspective, high compliance expectations, and a paternalistic attitude. The role of diabetes specialty nurses is complex since these nurses try to promote a healthy lifestyle for patients. However, outcomes of care are evaluated by testing patients’ metabolic balance, which the patients themselves are in a high level control. However, the themes indicate that nursing is based more on a biomedical paradigm than a patient-centred one. Since many patients with type 2 diabetes treat themselves and may need support in their efforts to manage the disease, these authors highlight needs as expressed by the patients themselves. In addition to providing information about risks and complications, patients need healthcare providers to show them possibilities, induce hope, and console them when they fail.