3. Psychological care

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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

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