The personal meaning of having diabetes 40
SECTION ONE: EMOTION, MOOD AND HOW PEOPLE FEEL
Self-efficacy 41
Locus of control 42
Health beliefs 42
Stress and diabetes 44
Grief and diabetes 45
Coping with diabetes 46
Depression and diabetes 47
Insulin injection phobia 48
Emotions 48
Eating disorders 49
SECTION TWO: THE CHANGING PHILOSOPHY OF DIABETES CARE
SECTION THREE: WHAT IS COUNSELLING AND HOW CAN IT HELP?
Core counselling skills 55
The qualities of a counsellor 57
Chronic disease model of self-management 60
Conclusion 63
References 64
INTRODUCTION
Diabetes has a major psychological and social impact on people’s lives. A diagnosis of diabetes carries significant implications both for the diagnosed and for those close to them. The way people view their diagnosis of diabetes differs and this can affect their self-care. Diabetes does not, however, exist in a vacuum; associated life events, such as bereavement or redundancy, can clearly affect diabetic control. Just as having diabetes can cause psychological and social problems, so psychological and social problems can upset the self-management of diabetes.
Clinicians working in the primary-care setting are in a unique position in that they have the opportunity to offer psychological care as an essential component of diabetes care. Their view of the person’s experience of living with diabetes on a day-to-day basis is uncluttered by the institutional elements of hospital care that often mask individuality. Additionally, heightened awareness of the complexity of an individual’s life is likely to be increased, particularly with knowledge of family, friends, home environment, etc. This chapter explores some of the psychosocial difficulties of living with a life-long condition. Methods of enhancing the delivery of psychological care, with particular emphasis on counselling and communications skills and how these can be integrated into diabetes care, are also discussed.
THE PERSONAL MEANING OF HAVING DIABETES
Let us first undertake some self-analysis. Suppose you had just been diagnosed as having type 2 diabetes. You might have been told that you are at a greater risk of heart attack or stroke, and that these could occur at an earlier age. You might already have some of the microvascular complications, such as diabetic retinopathy or diabetic nephropathy, because apparently you have had diabetes for some years but it had been undiagnosed. You might also have other risk factors associated with diabetes and cardiovascular disease, such as hypertension, obesity, smoking or hyperlipidaemia. On the one hand, receiving this information can be quite frightening but, on the other hand, how can you take this disease seriously when you have no symptoms and, in fact, feel very well? You discuss it with a friend who also has type 2 diabetes and discover that her doctor told her this is the mild form of diabetes – you can understand this because at least you don’t need to inject insulin. That would be really serious!
Or consider what the most difficult aspect of living with type 1 diabetes might be? Would it be the insulin injections or blood glucose monitoring, or the restrictions on what and when you can eat? Or would it be hypoglycaemia and associated risks, or the prospects of complications if you found it difficult to control your blood glucose levels?
From the above, the diagnosis of diabetes, whether type 1 or type 2 diabetes, will vary in its impact and will mean different things to different people. How people feel about having diabetes and what self-care practices they adopt will vary widely. The challenge in diabetes care is to acknowledge the individual’s own personal experience of living with diabetes and have an awareness that unacknowledged influences might be at work and that these can prevent healthy self-care practices. Ultimately, people want to take good care of themselves but might be hindered by psychosocial issues (Rogers 1980). Examples of some of these influences that prevent optimal self-care are given later in the chapter.
What questions arise from the clinician’s perspective in trying to help people with diabetes to manage their diabetes? What can we as clinicians bring to the partnership that we have with people with diabetes that addresses self-care barriers and enhances self-care?
SECTION ONE: EMOTION, MOOD AND HOW PEOPLE FEEL
Traditionally, we there are three domains of psychology: affect (A), behaviour (B) and cognition (C). People’s thinking can affect how they feel and determine whether they will take health-promoting or illness-preventing actions. Several factors can influence a person’s behaviour regarding a health problem, specifically their perceived threat of the health problem and the pros and cons of taking action to address the problem. This will be addressed more fully later in the chapter. To achieve good diabetes control requires sustained effort and unfortunately there are many physical and psychological barriers to achieving this (Polonsky 1999). Often, people will not take their prescribed medication, they fail to take regular and appropriate amounts of insulin and generally achieve suboptimal glycaemic control (Donnan et al 2002, Evans et al 1999, Morris et al 1997).
For the purpose of this chapter we are going to talk about psychology affect, in other words, emotion, mood and how people feel.
SELF-EFFICACY
In his Social Cognitive Theory, Bandura (1977) described a ‘construct’ that emphasised the confidence that someone has in expecting that a behaviour will result in a given outcome (outcome expectation) and the belief that one can actually carry out the behaviour that results in the expected outcome (efficacy outcome). At a basic level, therefore, self-efficacy could be described as confidence:
The good thing about me having the flu was about getting the confidence to adjust my insulin doses…in the future I can take control myself…
Therefore, knowledge and skills are not enough but confidence, especially in the face of adversity, is a necessary component. Self-efficacy is a stronger predictor of actual behaviour than locus of control and can predict the actioning of choices made. Anderson et al (2000) chose self-efficacy as the main area of empowerment in their Diabetes Empowerment Scale because they observed that studies have shown that perceived self-efficacy enables people to engage in behavioural challenges. In the context of diabetes these are usually related to self-management tasks such as blood glucose monitoring. However, in this case the authors have constructed a measure of what they describe as a ‘higher order self-efficacy’, which includes domains such as; managing psychosocial aspects of diabetes, assessing dissatisfaction and readiness to change, and setting and achieving of personally identified goals through action planning. This scale, and a short form (DES-SF) (Anderson et al 2003), can be viewed at www.med.umich. edu/mdrtc.
In the consultation, questions that the clinician could ask the person with diabetes to find out about self-efficacy could include:
How confident do you feel about telling your employer that you have diabetes?
or
How confident do you feel about giving up smoking?
What do you see as the difficulties in giving up cigarettes?
The person with diabetes might then embark on his or her experiences around, for example, peer pressure to smoke and the sense of needing cigarettes to reduce stress. It might then be possible for the person to identify an achievable goal and plan in detail how to achieve that goal. This will enhance the person’s sense of self-efficacy. Goals and action planning are discussed further on in this chapter.
LOCUS OF CONTROL
According to the Health Locus of Control Model, people demonstrate internal locus of control when they believe that they have responsibility for their own health. Having an external locus of control means that health is seen as the responsibility of others, that what happens is a result of influences beyond our control (Wallston et al 1976). Peyrot and Rubin (1994) have investigated the locus of control construct further in the context of diabetes. Having noted that studies examining the relationship between locus of control and health outcomes had mixed results, they designed a diabetes-specific locus-of-control instrument that enabled them to identify and explain these paradoxical differences. Their results showed that internal locus of control had two components that can predict opposing outcomes in terms of self-management. The first component, autonomy, is linked with successful self-care that reinforces competence and becomes self-perpetuating. The second component is self-blame, which is related to negative outcomes. Peyrot and Rubin (1994) also sought to clarify conflicting reports about health outcomes and external locus of control. Again two dimensions were implicated in opposing health outcomes. They found that so-called healthy outcomes (e.g. glycaemic control within normal or near-normal limits) were associated with the dimension of ‘powerful others’. They found that ‘chance’ locus of control (where people believe that things that happen to them are as a result of chance) resulted in suboptimal health outcomes.
HEALTH BELIEFS
Four important belief factors constitute Becker’s (1974) Health Belief Model, which determines whether or not an individual will follow a recommended treatment plan. These beliefs involve perceptions of:
2. Vulnerability to the disorder: there is a difference between the degree of susceptibility felt by people with type 1 diabetes and people with type 2 diabetes. According to the Health Belief Model, the more susceptible a person feels, the more likely he or she is to actively self-manage the diabetes.
3. The benefits of treatment: in diabetes, those who understand and see the benefits of self-management are more likely to perform self-care behaviours than those who don’t see the benefits.
4. The barriers to treatment: there are many costs to diabetes self-management, for example dietary restriction and fear of hypoglycaemia, and individuals need to believe that the benefits outweigh the costs.
Becker later described these health beliefs in relation to diabetes self-management (Becker & Janz 1985). A person’s readiness to follow the treatment regimen is highly dependent on two aspects: (1) the perceived desirability of avoiding the symptoms and the complications of the disorder; (2) the belief that the health actions necessary will be effective but not too costly when compared to other valued aspects of the individual’s lifestyle.
Understanding health beliefs, the issues of self-responsibility and making choices are components in psychological care and in the concept of empowerment.
Question ‘How can I actually motivate a person with diabetes to take responsibility for his or her diabetes?’
The reality is that people with diabetes already have, and take, responsibility for making countless decisions regarding self-management every day. Clinicians often believe the person with diabetes ‘is not motivated’ if his or her decisions are at odds with clinician recommendations. In their book Health behaviour change: a guide for practitioners, Rollnick et al (1999) describe motivation as being the individual’s ‘expressed degree of readiness to change’ (p 23).
Readiness to change is a component of motivational interviewing, which also includes consideration of the individual’s confidence and how important the change is to the person. In motivational interviewing the role of the clinician is to understand the reasons for the decisions taken and to elicit barriers to particular decisions. If barriers exist, it might be possible to work collaboratively to find strategies. A common example would be the individual who chose hyperglycaemia in order to avoid hypoglycaemia. Once recognised as a barrier, it might be possible, through negotiation, to look at options that would enable more stable blood glucose levels while still avoiding hypoglycaemia. Conversely, there might be no realistic alternatives and the person with diabetes is making an informed choice.
A number of issues are associated with the psychology of diabetes; these are covered below.
MAJOR LIFE EVENTS AND DAILY HASSLES
Everyone experiences major life events from time to time. Life events can be graded according to how disruptive to one’s life they are (Holmes & Rahe 1967). Death of a spouse, divorce and redundancy come near the top of the list for causing most disruption and stress (Box 3.1). Marriage and moving house come somewhere in the middle, whereas holidays and Christmas come closer to the bottom. Alternatively, the accumulation of minor routine aspects of daily living – ‘daily hassles’ – can result in the person feeling stressed. These daily hassles might or might not be directly connected with living with diabetes (Polonsky 2002). Experiencing a major life event and/or daily hassles will produce a certain degree of stress, which interferes with diabetes both physiologically and behaviourally (Riazi et al 2004).
Box 3.1
Life events in decreasing order of severity (Holmes & Rahe 1967)
▪ Death of a partner
▪ Separation or divorce
▪ Death of close family member or friend
▪ Personal injury or illness
▪ Marriage
▪ Dismissal from job
▪ Marital reconciliation
▪ Retirement
▪ Change in health of family member
▪ Pregnancy
▪ Sex difficulties
▪ New baby
▪ Changes at work
▪ Change in financial situation
▪ Son or daughter leaving home
▪ Outstanding personal achievement
▪ Starting or leaving school
▪ Trouble with boss
▪ Moving house
▪ Change in school
▪ Going on holiday
▪ Christmas
What is stress?
It has been suggested that ‘the essence of stress is the feeling of doubt about being able to cope…’ (Lancet 1994). The reasons why people feel they can or cannot cope are varied. Whereas some people can cope with very major problems, others are unable to cope with seemingly minor difficulties.
During times of stress, people find that their diabetes becomes more difficult to control. Most people find that their blood glucose seems to rise during stress, but others find that they alternate between hypoglycaemia and hyperglycaemia. This occurs for two reasons. First, the physiological response to stress produces several stress hormones, including adrenaline. These hormones work in opposition to the action of insulin and usually cause the blood glucose to rise. Less commonly, some people become hypoglycaemic in response to stress, but this mechanism is less well understood (Riazi et al 2004).
Second, people who are experiencing stress try to find ways of alleviating the symptoms and blocking out the problems causing that stress. This response is usually behavioural. Some people eat more than usual or turn to more highly refined carbohydrate foods such as chocolate. Others drink more alcohol than usual, whereas smokers tend to smoke more cigarettes. Some find that they lose their appetite when they are under stress, which might be another reason for hypoglycaemia at that time. All of these responses can interfere with diabetic control.
GRIEF AND DIABETES
It is usual for people to experience a sense of loss in response to many situations, including a death, the break-up of a relationship, redundancy or retirement. Even the diagnosis of diabetes or diabetic complications can involve grieving for the loss of health and lifestyle.
Grieving is well described as a staged process of coming to terms with the new situation. People experience a variety of reactions including denial, anger, bargaining, isolation and depression prior to acceptance (Kubler Ross 1990). This process is normal and the timeframe varies from person to person. Case study 3.1 demonstrates how grief, due to bereavement, can affect a person’s blood glucose control.
Case study 3.1
Claudette is in her late forties. She came to see the nurse because she knew her diabetes was ‘out of control’. She wasn’t eating well and she was either hypoglycaemic because she hadn’t eaten enough or feeling tired and thirsty because she had eaten too much of the ‘wrong’ foods. When asked if anything else was going on in her life to cause her to overeat, she burst into tears and cried vigorously about the death of her father.
Initially, it was thought that Claudette’s father had died within the last few days, but it transpired that he had died 9 months before. It was obvious that she had not made any progress in grieving for her father. On further questioning the reason became obvious. Claudette’s father had lived with her for 9 years. During that time she and her husband had never had a holiday and they had finally decided to spend a week away on their own. Claudette’s father went to stay with his other daughter but within 24 hours he had died suddenly and unexpectedly. This resulted in Claudette being consumed with guilt, believing that, if she had been less selfish about going on holiday, her father would still be alive.
People have different ways of coping with the difficulties they experience. Unconscious strategies such as denial, obsessional behaviour and projection are employed to lessen the impact of living with diabetes.
DENIAL
It is a normal and protective response for some people to use ‘switching off’ or denial as a way of coping. Denial can be present at diagnosis and remain for several years afterwards, however, it can also cause the person to be ‘switched off’ from good self-care practices, especially in type 1 diabetes (Lo et al 2001). For example:
I really don’t think the diabetes is a problem. I have never felt better. I wonder if the doctor has made a mistake – I mean, I don’t do as they ask me to do, and I am neither up nor down – what’s the point in going to the clinic?
OBSESSIONAL BEHAVIOUR
Some people who experience a great deal of anxiety in relation to their diabetes find that they feel more in control if they are very precise about their self-care practices. They might monitor their blood and urine more frequently than necessary and document everything they have eaten. They are particularly aware of calorie and carbohydrate exchanges and try to make sense of differences in glycaemic levels in terms of their energy expenditure, diet, stress levels, etc. This level of self-care activity is only of concern if it intensifies and becomes the main feature of the individual’s daily life. If this has happened then these behaviours suggest that the person might not have come to terms with the diagnosis:
PROJECTION
Although the clinician encourages the person with diabetes to take responsibility for his or her diabetes, the person believes that what happens to the diabetes – good or bad – is as a result of outside influences. The person places (projects) the responsibility of his or her diabetes onto others – doctors, nurses, dieticians, family and/or friends:
I said to the doctor that the diet the dietician has given me is completely unacceptable. I can’t be eating one thing and my family eating another. The dietician said that I should give my family the same diet as me, she said it was healthy for all of us, but I told her that the family wouldn’t put up with that…anyway, it is far too expensive.
Projecting responsibility onto others demonstrates an external locus of control.
DEPRESSION AND DIABETES
Depression is common – both in people with diabetes and in those who do not have the condition. However, research has shown that it is more common in people with diabetes. In the general population 5–8% of people will be experiencing a major depressive episode at any point in time; this figure rises to 15–20% for people with diabetes, two to three times that of the general population (Anderson et al 2001, Gavard et al 1993, Lustman et al 1997). In two UK studies, just under 38% of people with diabetes attending outpatients reported moderate to severe levels of anxiety or depression, with no apparent differences in levels of depression in type 1 and type 2 diabetes.
Meta-analyses link depression in diabetes with hyperglycaemia (Lustman et al 2000) and with an increased risk for complications (de Groot et al 2000). People at elevated risk for depression can be identified through their medical history and clinical presentation, and by asking depression-specific questions or through use of depression screening tools. People with a history of depression, anxiety disorder, mental health treatment, substance abuse or smoking are at heightened risk for depression, as are women and those with a family history of depression or mental health treatment. People who have multiple complications are more likely to be depressed, especially when those complications include neuropathy, impotence, or cardiovascular disease (de Berardis et al 2003, de Groot et al 2001).
EFFECTS OF DEPRESSION
Apart from depression being a serious condition that can have a substantial effect on people’s quality of life, it affects diabetes in several ways. When depressed, individuals lack the motivation for self-management, which leads to poor dietary care, lack of physical activity and infrequent monitoring, which in turn can lead to further feelings of failure and hopelessness. This is frequently managed by comfort eating or drinking and, for those who smoke, increased smoking. This is often referred to as the indirect effect of depression on diabetes, but there is also thought to be a direct effect. That is, depression is associated with increased levels of the hormone cortisol, which acts in a number of ways (stimulating glucose release from the liver and blocking the action of insulin) to increase circulating blood glucose levels. For these reasons, depression in people with diabetes is predictive of poorer metabolic control, earlier onset of complications and more rapid progression of diabetes; it is particularly predictive of the onset of coronary heart disease.
INSULIN INJECTION PHOBIA
Injection phobia, although a common phrase, is actually very rare. Being anxious at the thought of injecting oneself is a normal emotional response. Recent evidence suggests that true injection phobia is only likely to occur in people who have had or who currently have a genuine phobia, for example, agoraphobia.
EMOTIONS
The diagnosis of diabetes generates a wide range of emotions, from utter shock and disbelief through to relatively calm acceptance of the news. The way in which a healthcare professional breaks the news can have a substantial impact on the short- and long-term process of adjusting to living with diabetes. Diabetes carries with it a level of emotional weight or burden. People with diabetes will demonstrate different emotional responses as they adjust to the impact of diabetes on their lives. The burden of diabetes will increase and decrease according to perceived difficulty and hardship. The emotional burden of diabetes can be measured by a recently developed instrument know as the Diabetes Distress Scale (DDS) (Polonsky et al 2005). It should be noted, however, that not all of the emotional consequences of diabetes are negative.
Research indicates that the emphasis placed on dietary control in the management of type 1 diabetes can place a person with diabetes at an increased risk of some disturbance in eating behaviour. The true prevalence of eating disorders among people with diabetes is unknown, partly because it is difficult to distinguish between a focus on food and the body that is a necessary part of life with diabetes and the abnormal concerns and behaviour that are used to diagnose eating disorder (Hall 1997). Recent research suggests that between one-third and one-half of all young women with type 1 diabetes engage in insulin purging, i.e. deliberately taking less insulin than they need for good glycaemic control, in order to control their weight (Rydall et al 1997). This causes blood glucose levels to remain high, fat storage to be inhibited and excess glucose to pass from the blood and be excreted in the urine. Many individuals with type 1 diabetes and disordered eating believe this behaviour to be easier and less unpleasant than vomiting. In people with type 2 diabetes, binge eating is relatively common, with estimates of disordered eating in this population ranging from 5 to 25% (Crow et al 2001, Hepertz et al 2000, Kenardy et al 2001, Mannucci et al 2002).
SECTION TWO: THE CHANGING PHILOSOPHY OF DIABETES CARE
Education is a major aspect of diabetes care and so it is important to consider some of the psychological elements of learning and behaviour change. Traditionally, diabetes education was seen as an information-giving exercise (see Chapter 11). The assumption was that once information had been provided, good self-care practices would follow. For example, someone might be asked to perform blood glucose monitoring but seems not to be doing so. One approach would be to assume that, for some reason, the person had not understood either the procedure or the importance of doing the procedure. The demonstration of the procedure could be repeated and the individual encouraged to practise that skill. The importance of blood glucose monitoring on a regular basis would be re-emphasised. This method is known as the ‘compliance or traditional medical model approach’ (Anderson & Funnell 2005).
However, there could be other reasons for a person with diabetes not testing for blood glucose. For example:
I can’t bring myself to test my blood. Every time I think about it I feel angry about it and about having diabetes. Why me? I don’t need this. I’ve got enough on my plate; I’m not going to do it.
Here the person might be ignoring blood testing because he or she has not yet accepted the diabetes. Blood glucose monitoring is a physical reminder of the diabetes. The person might be denying the diabetes (as a way of coping) and blood glucose monitoring acts as an emotionally painful reminder of the anger about having a life-long disease and all that this entails.
Being able to drive is the most important thing for me [value]…Driving is an essential element of my work and I need to work to pay the bills. I can’t risk hypoglycaemia so I choose to run my blood glucose levels a bit higher even though I know I am increasing my risk of complications.
Another person might look at things differently:
My health is the most important thing to me…I don’t want to get complications [value]. I drive as part of my work but I am worried about hypoglycaemia so I find that if I test my blood glucose before each drive and make sure I eat regularly – and for me that means snacks in between meals – then I feel I am as safe as anyone else [belief].
Understanding a person’s values and beliefs, and acknowledging that they might be different from your own, is a first step to effective psychological and educational care. These differences, however, can be uncomfortable for healthcare practitioners. In case study 3.2, Reuben demonstrates how his values affect his beliefs.
Case study 3.2
Reuben is an intelligent, articulate 49-year-old sales manager who has had type 1 diabetes for 30 years. He has most of the diabetic complications, including diabetic nephropathy (which required a kidney transplant 2 years previously), retinopathy and neuropathy. His blood glucose levels remain consistently high, although having developed complications he might be expected to be highly motivated to improve his diabetic control, not least to protect his new kidney. The specialist nurse assumed that this was the case. Several education sessions failed to persuade Reuben to adjust his insulin. When he is eventually asked at what levels he prefers his blood glucose to be, he explains that he would rather risk further deterioration in his complications than risk hypoglycaemia. For Reuben, hypoglycaemia was an experience akin to a nightmare:
Question ‘How can I avoid feeling angry when people with diabetes do not comply?’
Clinicians spend years acquiring their expertise in their chosen subject. Additionally, they see what happens to people with diabetes after years of suboptimal glycaemic control in terms of serious microvascular and macrovascular complications. There is no doubt that there is often conflict between what the clinician might want for a person with diabetes and what any individual with diabetes wants for him- or herself. Rather than feeling effective as a clinician one might feel a degree of inadequacy if a person with diabetes is making choices that could be considered detrimental to long-term health. This situation can result in the healthcare professional feeling angry and this might, unwittingly, be communicated to the person with diabetes.
Reflecting on your own beliefs and values in relation to helping people with diabetes can help you understand the nature of your anger. To be effective as a person-centred practitioner you need to communicate genuineness, empathy and unconditional positive regard. If you are person-centred then you will have certain beliefs about the human race and one of those beliefs is that people do the best for themselves given their internal and external circumstances. This understanding is crucial in underpinning good psychological and educational practice because it acknowledges that, despite a person’s best efforts, there are barriers to optimal self-management. The role of the clinician in a collaborative relationship is to use one’s communication/counselling skills to broach barriers to optimal self-care. Ultimately, however, the choices are with the person with diabetes and, in an empowering relationship, the clinician will respectfully accept the decisions that person makes. That doesn’t mean to say that decisions about self-care cannot be discussed and modified sometime in the future; barriers can be revisited.
Question ‘What evidence is there that psychological care makes a difference and is it only a psychological difference or does it also make a difference to HbA1c?’
A study by Michie et al (2003) demonstrated that facilitating people to take action can result in significant behaviour change. This study noted that physical and psychological outcomes of patient-centred care are often inconsistent. Following a review of the person-centred literature in the context of those with chronic disease, it was identified that patient-centredness can be defined in two distinctive ways and has two distinctive outcomes. A total of 30 studies were examined: 20 took the perspective of the individual and 10 ‘sought to activate’ the person with diabetes. The studies taking the latter approach were more consistently associated with good physical outcomes. Based on an examination of the studies, Michie et al (2003) describe taking the perspective of the individual with diabetes as the ‘first ingredient’ and activating the person’s self-management as the ‘second ingredient’.
There might be times in the diabetes consultation when the first ingredient – taking the person’s perspective – is more appropriate, for example, when an individual has received news regarding diabetes diagnosis, diagnosis of complications or there is some other aspect of life for which the person with diabetes might need emotional space in which to adjust.
In the UK, most diabetes education, management and support is done in the context of 1 : 1 consultations with different clinicians, each of whom will offer education as part of the consultation process. Evidence suggests that these consultations are didactic in nature and promote a compliance-based model of consultation (Parkin & Skinner 2003, Pill et al 1998). Conversely, investigation of the diabetes literature intimates that patient self-efficacy and self-management improve when consultations with primary care physicians involve agreement about the content of the consultation (Heisler et al 2003, Williams et al 1998). However, the Heisler study tended to highlight the negative effects of consultations where there was disagreement between physicians and people with diabetes on treatment goals and strategies.
Question ‘Is person-centredness not just about being nice?’
Whereas a person-centred approach is seen by some as a passive activity (Michie et al 2003), Brown (1996) suggests that it is often seen as ‘being nice’ while still expecting compliance. To be person-centred, however, requires the practitioner to be aware of his or her guiding philosophy of practice and to have certain qualities and skills to communicate that philosophy. These are described below.
Person-centredness is a philosophy of counselling and of education developed by the American psychologist Carl Rogers. His basic premise (Rogers 1978) was that the individual:
…is basically a trustworthy organism, capable of evaluating the outer and inner situation, understanding him- or herself in its context, making constructive choices as to the next steps, and acting on those choices.
Rogers’ philosophy was that the person, not the problem, was the focus in counselling and education. Some beliefs held by person-centred practitioners include:
▪ That human nature is essentially constructive.
▪ That people do their best to grow and to preserve themselves given their internal and external circumstances.
▪ That it is important to reject the pursuit of authority or control over others and seek to share power (Bozarth & Temaner Brodley 1986).
SECTION THREE: WHAT IS COUNSELLING AND HOW CAN IT HELP?
So what can the professional do? What is counselling and how can it help?
In some ways it is easier to say what counselling is not. Counselling is not about giving advice, it is not about solving people’s emotional problems, nor is it about stopping people’s distress.
The following definition of counselling might help to clarify the philosophy of what counselling is:
Counselling is a process through which one person helps another by purposeful conversation in an understanding atmosphere. It aims to establish a helping relationship, in which the one counselled can express his thoughts and feelings in such a way as to clarify his own situation, come to terms with some new experience, and see his difficulty more objectively and so face his problems with less anxiety and tension. Its basic purpose is to assist the individual to make his own decision from the choices available to him. (Royal College of Nursing Working Party 1978)
Let us analyse the definition in a bit more detail by looking at the definition more closely.
A PURPOSEFUL CONVERSATION
Counselling, or a consultation, is sometimes regarded as a ‘chat’ about psychosocial issues. What can often happen is that the ‘chat’ or ‘counselling’ consists of a number of closed questions that the clinician might think are relevant but which do not allow the person with diabetes to elaborate or to express new material.
Counselling is a precise way of communicating with someone. Many counselling skills can be used to facilitate a person-centred approach in the consultation; some of these are described later in the chapter.
In counselling it is important to set aside dedicated time. It helps to inform the person how much time is allocated as pressure is often experienced by the thought of others waiting to be seen. The time spent should be uninterrupted; surroundings should be comfortable, temperate, free from noise and seats placed in such a way that allows a sense of easy communication. The person-centred practitioner is paramount in creating an understanding atmosphere.
CLARIFICATION AND EXPRESSION OF THOUGHTS AND FEELINGS
Often people are confused about problems they are experiencing and counselling skills can be used to help make more sense of what is happening, from both an emotional standpoint and clarification of a problem. This is further explored in the section on counselling skills.
A HELPING RELATIONSHIP
It is the nature of health care to do for individuals that which they cannot do for themselves. When with a distressed person, it is only natural that a clinician will want to make things better. One way of doing this might be to try and persuade the person to adopt a solution that the clinician considers ‘best’. This rarely works for two reasons: (1) no matter how much the person has told you about the problem, his or her recollection will be personal and selective; (2) often, the person will instinctively know if a solution is the right one or not. If ‘prescribed’ an inappropriate treatment the person will simply not follow it, for example:
Clinician: ‘I think the best thing you could do is talk to your husband about your worries and I’m sure you will find that he will be very understanding.’
Person with diabetes (thinking to herself): ‘I couldn’t possibly discuss it. He would go mad’ (and then out loud): ‘If you think that is the best thing to do.’
An alternative dialogue, where the clinician suggests a possible solution in a way that allows the person with diabetes to accept or reject it, could go as follows:
Clinician: ‘What would happen if you talked to your husband about your worries?’
Person with diabetes: ‘Oh no, he wouldn’t be at all understanding. He would go mad if he knew about my worries.’
CORE COUNSELLING SKILLS
OPEN INVITATION TO TALK
When helping a person with diabetes to talk about his or her difficulties, it is important to structure questions in a way that discourages a ‘yes’ or a ‘no’. For example, ‘What would you like to talk about today?’ or ‘How have things been since we last met?’. Questions that begin with ‘What…’, ‘How…’, ‘Could you…’ and ‘Can you…’ are called open questions. They allow the individual to start where he or she wants. A closed question will come from the frame of reference of the questioner. Closed questions often seek very specific information, for example ‘How old are you?’, ‘Are you married?’, ‘What is your job?’ (Egan 1998).
VERBAL FOLLOWING
Verbal following means responding to whatever the person with diabetes has been saying at that time or earlier on in the session. The clinician does not need to introduce new topics; the individual will set his or her own agenda, which the clinician follows. The clinician should feel no pressure to ‘keep the conversation going’. If the individual is silent then the clinician can be silent too or the silence can be acknowledged, for example ‘Sometimes it can be difficult to know what to say’.
PARAPHRASING
Paraphrasing is where the clinician repeats to the person with diabetes what has been said in the clinician’s own words. This has two main functions. First, it enables the person to ‘hear’ with more understanding and insight what he or she has just communicated, particularly if the paraphrase is concise. Second, the person will feel listened to and understood. As with summarising and reflecting feeling (see below), paraphrasing must be tentative so that the person can correct the clinician if he or she is incorrect. Paraphrasing is not the literal mirroring of what has been said, rather, it crystallises the essence of what has been said:
Person with diabetes: ‘Everything is in a mess at the moment, my marriage, my job and my diabetes.’
Clinician: ‘It sounds as if you have a lot on your plate at the moment.’
Feelings can be reflected back to the client when the clinician is trying to understand the client’s emotional experiences. To reflect feelings, the clinician must not only recognise and correctly label the feeling but also interpret the level of intensity. As a result, the person with diabetes sees that his or her feelings are accepted and are receiving attention. The person might then feel able to disclose further feelings and to become more aware of them. Sometimes people have mixed feelings, which can inhibit them from getting a clear picture:
Person with diabetes: ‘Diabetes has been the worst thing that has happened to me.’
Clinician (not getting it quite right): ‘So you’ve been a bit upset about this?’
An alternative and more appropriate response would be:
Clinician: ‘It sounds as if you have been devastated by what has happened.’
People show their feelings in different ways: verbally, non-verbally or a combination of both. An individual’s non-verbal communication can be acknowledged by verbal response, for instance:
The person with diabetes drums his fingers on the table and appears ‘jumpy’.
Clinician: ‘You seem quite agitated about this?’
SUMMARISATION
The key purpose of summarisation is to help the person with diabetes draw together the thoughts and feelings that he or she has communicated. When the clinician uses summarisation, the individual’s verbal and non-verbal statements will be attended to. This is particularly useful during a consultation if the clinician becomes unclear about what is being communicated. Summarising either part way through, or at the end, can clarify thoughts and feelings for both the person and the clinician. As with other skills, summarising should be done tentatively. Clarifying a problem or difficulty can lead to the person with diabetes gaining insight and making progress.
Clinician: ‘I wonder if I could recap the last 10 minutes or so. You started off by saying that everything was “in a mess” and this included your marriage, your job and your diabetes. You decided to concentrate on talking about your diabetes and we would set aside another time to discuss your work and your marriage. In the last few weeks since you were diagnosed with diabetes you have been finding it difficult to stick to your diet and this is partly because you feel rebellious but also angry, as you believe that having diabetes has affected the way other people think of you, and this includes your husband and your colleagues at work. Is there anything that you would like to change or add?’’
THE QUALITIES OF A COUNSELLOR
The core qualities of the person-centred approach have been adopted by most counselling disciplines as being central to the healing process of clients and are seen to be therapeutic. The core qualities are:
▪ genuineness
▪ empathy
▪ acceptance.
These conditions or qualities are expressed through the use of communication skills above.
GENUINENESS
This quality is also known as ‘realness’ or ‘congruence’. The genuine practitioner communicates a set of attitudes and counsellor behaviours (Egan 1998). The genuine practitioner will be him- or herself in interactions with others whilst maintaining professional boundaries. He or she will not need to hide behind a uniform or to have a different persona when with the person with diabetes. Two ways to communicate genuineness are not to overemphasise the ‘helping’ role and to avoid defensiveness when faced with challenging behaviour (Egan 1998).
EMPATHY
To be empathic means to truly comprehend another person’s experience by paying careful attention to the individual’s story, observing verbal and non-verbal content and reflecting back. True empathy comes from exploring, using the skills above, the nature of the person’s experience. Being empathic requires 100% attention and so the listener’s own agenda is set aside as he or she listens empathically (Egan 1998).
ACCEPTANCE
This is also known as being non-judgemental or having unconditional positive regard. The accepting practitioner values and has a deep regard for the humanity of the person with diabetes. This regard goes beyond, and is unaffected by, the behaviours of the person, which might otherwise be seen as negative, destructive or self-defeating (Mearns & Thorne 1999).
Whereas the counselling process serves to increase self-esteem and enables the person with diabetes to think in a more positive way about him- or herself, the following questions can help clinicians to think about issues that occur when working with people with diabetes:
Question ‘Empowerment seems to be important in the political health agenda in the UK but is it not just a byword for people to be able to do what they want?’
It is right that some people are concerned that empowerment is synonymous with patient choice and that patient choice means passivity on the part of the clinician.
There are three key principles of the empowerment approach to diabetes care. First, the reality is that more than 98% of care is provided by the person with diabetes; therefore, that person is the locus of control and decision-maker in the daily treatment of his/her diabetes. Second, the primary aim of the healthcare team is to provide on-going diabetes expertise, education and psychosocial support so that the person with diabetes can make informed decisions about his or her daily diabetes self-care. Finally, people with diabetes are more likely to make and maintain behaviour changes if those changes are personally meaningful and freely chosen (Anderson 1995).
The empowerment approach acknowledges the person with diabetes as expert and at the same time provides knowledge and encourages motivation for self-care. An empowerment approach also acknowledges that people with diabetes have to make choices and ensures that these choices are informed ones. Moreover, it allows for consideration of the emotional context of living with, and caring for, diabetes and provides a forum for support of that care. Research shows that using the empowerment approach in consultations (including listening/taking note of opinions, acknowledgement of emotional context, joint decision making and motivating) is related to improvements in self-care and glycaemic control (Anderson 1995, Kyngas et al 1998, Street et al 1993, Williams et al 1998; all cited in Skinner & Cradock 2000).
Funnell et al (1991) stated that for people with diabetes to be self-empowered they require:
…the knowledge, skills, attitudes and self-awareness to influence their own behaviour and that of others in order to improve the quality of their lives.
The concept suggests that people should be enabled to assume more control over those aspects of their lives that affect their health. Individuals are expected to participate actively in health care and decision making.
To facilitate self-empowerment, health professionals also need self-awareness and skills in terms of their own attitude and approach towards people with diabetes. Anderson & Funnell (2005) compare the traditional medical model style of diabetes consultation with a person-centred empowering model style of consultation (Table 3.1). Changing from the traditional medical style to the person-centred empowering way of consulting can be achieved by the use of communication skills in the consultation, for example using open questioning. Having a structure to the consultation allows the clinician and the person with diabetes to identify issues, to learn what is important (values), to look at options, to decide on goals and to commit to actioning choices. This empowerment model of consultation also tests whether the options are realistic and invites the person with diabetes to consider what support he or she needs to achieve his or her identified goals. The aim of an empowering style of consultation is to assist the individual to problem solve.
| Traditional medical model | Empowering person-centred model |
|---|---|
| Diabetes is a physical illness | Diabetes is a biopsychosocial condition |
| Relationship of provider and patient is authoritarian, based on provider expertise | Relationship of professional and patient is democratic and based on shared expertise |
| Problems and learning needs are usually identified by professional | Problems and learning needs are usually identified by the patient |
| Professional is viewed as problem solver and caregiver, i.e. the professional is responsible for diagnosis and treatment | Patient is viewed as a problem solver and caregiver, i.e. professional acts as a resource and both share responsibility for treatment and outcome |
| Goal is compliance with recommendations | Goal is to be enable patients to make informed choices |
| Behavioural strategies are used to increase compliance with recommended treatment. A lack of compliance is viewed as a failure of patient and provider | Behavioural strategies are used to help patients change behaviours of their choosing A lack of goal achievement is used as feedback to modify goals and strategies |
| Behaviour changes are externally motivated | Behaviour changes are internally motivated |
| Patient is powerless, professional is powerful | Patient and professional are powerful |
PROBLEM SOLVING
Self-management is enhanced if people with diabetes have the confidence to work things out from themselves. This confidence can be nurtured by facilitating the setting of individually identified goals and talking through how best to implement the chosen goal, taking into account internal and external barriers. The goals are usually short-term, specific and realistic. They are not all-or-nothing goals, i.e. ‘I will lose 4 stones’, where failure is highly likely to induce negative feelings in the individual around confidence and competence. Instead, a more realistic short-term weight loss should be agreed, such as ‘In the next 4 weeks I will lose 7 lbs.’ The person with diabetes should have an opportunity to review and modify his or her goals depending on outcome. Clinicians should communicate clearly that they are inviting the person with diabetes to be his or her own expert (Lorig 2002).
Lorig (2003) goes on to describe four ways in which self-efficacy can be enhanced:
1. Skills mastery: confidence is gained through experience of doing things. Goal setting and action planning will enhance this process. It is for this reason that goal setting or action planning is part of all good self-management programmes. The presence or absence of goal setting was a key issue separating successful from unsuccessful education in asthma education (Bodenheimer et al 2002).
2. Modelling also enhances self-efficacy. Learning from others who have the same condition with similar experiences is far more powerful than learning from health care professionals who do not have the experience of living with the condition.
3. Reinterpretation of symptoms contributes towards self-efficacy. This is an area where it is important to understand the beliefs of the person with diabetes. For example the person with diabetes may believe that treatment is the responsibility of the clinician and not be aware that lifestyle changes can have a significant effect on symptoms and on outcomes.
4. Social persuasion supports confidence. Support for the individual with diabetes from one’s health professionals, friends, family and community are all-important, particularly peer support from others who have similar experiences.
Ideally, the goal(s) you agree with a person needs to be SMART:
▪ Specific
▪ Measurable
▪ Action-orientated
▪ Realistic
▪ Time limited.
Bill is 45 years old and has type 2 diabetes. Following a structured diabetes education programme, where he was invited to consider what goal he would work on to improve his health, Bill decided that he wanted to lose weight. (Result goal). One way to do this would be to be more physically active (Treatment goal). Bill was asked to think about what activity might be most suitable for him. He used to play football but as he works erratic hours it would be difficult to make a regular commitment. He needed to do something that he enjoyed and could do on his own. He decided that brisk walking would suit his lifestyle (behaviour/action). Bill was asked to think through in detail how he would make a commitment to achieving his goal (action plan). Bill decided that he would walk on three days a week and specified the days and times: Tuesday and Friday evenings, after his meal and Sunday mornings, after breakfast. He planned a route that he would walk and estimated that this would take him about 40 minutes. He decided to ask his wife to join him as he knew that she was also keen to lose weight and they could encourage and support each other (evidence shows that social support helps people achieve behaviour change). When asked how confident he was that he could achieve this on a scale of 1-10 (1 being not at all confident and 10 being very confident) he scored himself at 8 out of 10. If he scored himself at less than 7 then he would be less likely to achieve his goal.
Recent research shows that if individuals actually plan how they will enact or implement their generalised intention, there is a substantial increase in the likelihood that they will follow through on their intentions. Therefore, by helping people set goals that are specific, measurable, realistic and time-limited actions, they are being encouraged to develop an implementation intention. It is important that these SMART goals are behaviours.
For example, setting weight loss or lower blood glucose values as goals will not work; people with diabetes do not have complete control over these outcomes because they are influenced by their medication regimens, stress responses, etc.
In addition, goals must be specific, so, for example ‘eating less fat’ is not specific enough. It is essential that we support people with diabetes in detailing how, when and where they are going to achieve their goals.
Once the goals are established, it is important to help the individual plan, and identify anything that might get in the way. If the person is to commit to action, he or she will drive the planning process.
Question ‘I have read lots about different psychological theories and their impact on self-management but when I sit down with someone where do I start?’
Much is written about the different effects of psychological theories such as health beliefs, self-efficacy, locus of control and quality of life and it can feel somewhat like a melting pot. A number of possible interventions could be usefully applied if only you could remember what they were and integrate them cleverly into your consultation. Unfortunately, this smacks of the sticking-plaster scenario. From the physical standpoint, a person with diabetes is not a collection of organs with an abnormal blood glucose; similarly, the person with diabetes is not a collection of psychological theories needing to be fixed. How can psychological theory help us? The evidence tells us that self-efficacy is important, as is good quality of life. Social support is also important and having certain health beliefs and a particular locus of control can also effect self-management positively or negatively.
QUALITY OF LIFE
In Funnell et al’s (1991) definition of empowerment, quality of life is specifically cited as an optimal outcome. Defining quality of life, however, can be a somewhat treacherous area. The term ‘quality of life’ means different things to different people. At one level the term has become an advertiser’s cliché, at another it can be the main outcome of a scientific study. A bibliographic study of quality of life as reported in randomised controlled trials demonstrated that in many studies, quality of life was either poorly defined or not defined at all (Sanders et al 1998). This was partly attributed to the complex nature of the construct. This is highlighted by the multitude of instruments, both generic and disease specific, measuring quality of life.
Quality of life is a multidimensional construct containing several domains broadly covering emotional and physical well-being, social support, role functioning and treatment satisfaction with diabetes. Self-management decisions are often driven by quality of life issues. The comment below reveals quality of life issues in the psychological and physical domains. The person here has chosen to feel psychologically and physically well whilst acknowledging the long-term effects of his decision.
I’d rather not live as long than live the way you’ve got to live to keep them (blood glucose results) low. You’re just miserable all day, you don’t feel right. You can’t live like that for the rest of your life…I just try and live a normal life and I keep my sugars a bit higher…I know it’s not good for me in the long run but you still feel alright. If you are running too low then you are like an old man going about. That’s not for me.
Question ‘I worry that if I discuss feelings with a person with diabetes I might open a can of worms. Could I do any damage by doing this?’
Clinicians worry that by acknowledging that a person with diabetes has feelings they open up a can of worms or a floodgate of emotions that overwhelm the person with diabetes and/or the clinician and somehow ‘damage’ the person with diabetes. It is possible during a consultation that a masked depression or other psychological illness might be revealed; however, this will not have been caused by its acknowledgement. It is important that appropriate treatment is received. If the clinician finds him- or herself in an emotionally difficult situation beyond his or her abilities then it is important to refer the patient on to a colleague or specialist services if these are available. Listening to someone who is troubled is the first step to healing and the only time that a consultation is unlikely to be therapeutic is if the presenting problem is similar to an unresolved problem within the clinician, i.e. unresolved grief or experience of similar major life events that are still fresh for both the clinician and the individual.
Awareness of local psychological and psychiatric services is important; most major towns and cities have such services and many general practices in the UK employ counselling services. Most reputable counselling services will have British Association of Counselling and Psychotherapy approval. Some services will charge a fee but this is often tailored to suit the client concerned.
Question ‘So is it better to use a clinical psychologist attached to a diabetes unit to see people referred by members of the team or to ‘upskill’ the team to address psychological issues themselves?’
Both of these options have advantages and disadvantages. A clinical psychologist has the benefit of specialist expertise; however, delays in appointment availability can hinder progress. Also, referral to a clinical psychologist can be daunting for the individual with diabetes. ‘Upskilling’ the team to address psychological issues has the advantage of dealing with issues as they arise in consultations. However, the team cannot be expected to have the expertise held by a clinical psychologist.
Question ‘This is all very well but do I have the time?’
Psychological care can feel time-consuming, especially if emotional problems are detected. The use of listening skills will allow the person with diabetes to identify and address what is important. Conversely, not to use these skills may mean that clinicians are addressing their own agendas and are not meeting the needs of the person with diabetes (Parkin & Skinner 2003).
Psychological care of people with diabetes is an essential part of overall diabetes care. All clinicians involved in such care need to acknowledge and address the influences of psychosocial factors on people’s lives, their self-management, diabetic control, long-term health and quality of life. The primary healthcare team is in a position to view diabetes in a person-centred way rather than a disease-centred way and can enhance the delivery of psychological care by the use of communication skills that acknowledge the needs of each individual and assist in promoting self-management.
Diagnosing psychological disorders in people with diabetes requires special care, as the signs and symptoms of most common disorders can overlap with diabetes symptoms. Clinicians should retain a willingness to refer for appropriate investigation and treatment by a psychologist or other mental health specialists ideally within the diabetes care team.
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