Coping with diabetes: the individual,
the family and the physician

GR Sridhar, Endocrine and Diabetes Centre, Visakhapatnam - 530002.
K Madhu ,Dept of Psychology and Parapsychology,A.U.,Visakhapatnam - 530003.
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"…Even when people with diabetes are aware of the potential for long-term complications, the chances of "that" happening to "them" are frequently thought to be nonexistent. In their minds, the future is far off and luck is ever at their side. This is a dangerous attitude. The burden of diabetes cannot be addressed unless people with diabetes join hands with health care providers to combine our different abilities and outlooks."

Maria L de Alva, President, IDF

Diabetes mellitus is often silent, incurable, and must be controlled rather than cured. Managing diabetes has been described as probably the most complex and demanding of any common disease, for it requires a combination of one or all of the following (1,2)

Problems can occur in adhering to treatment, in attempting to prevent complications and in adjustment to complications if and when they occur. It is therefore difficult to adhere to such a complex management protocol 'to forestall some far-off poorly perceived danger particularly when they are made uncomfortable in the process.'

To paraphrase the American Declaration of Independence, the objective of treatment of diabetes is Life, Liberty and the Pursuit of happiness. 'Life' can be interpreted as normalizing blood glucose to reduce disability and death; 'liberty' from oppression of associated risk factors such as hyper tension, dyslipidemia, obesity, smoking and target organ damage; 'pursuit of happiness' is acceptability and quality of life profile. Like most ideals they are not often met.

In developing countries as in India, there is a combination of evolutionary and developmental accommodation in chronic diseases including diabetes mellitus (3).

Evolutionary adaptation is increasing in India, with the proportion of rural population receding to 70%; health parameters of migrant population are necessarily modified by interaction of genetic and environmental factors like altered food habits, energy expenditure and occupation.

Developmental accommodation occurs in many stages

In genetically susceptible individuals with poor adaptive responses (in terms of life style, migration and related stress and overweight due to sedentary nature and altered food intake), disorders like diabetes can set in. Increasing prevalence of diabetes is seen even in second to third generation migrants in rural areas

India can be considered as being among countries in the 'epidemiological transition (4) from having predominantly communicable diseases to one having a combination of communicable and non-communicable diseases.

It is the purpose of this chapter to define the hurdles in managing diabetes and to suggest ways to overcome them.

Psychology and diabetes: a historical perspective

In the 17th century diabetes was believed to be precipitated by sorrow. Attempts were then made to identify a 'diabetic personality', which predisposes such individuals to diabetes. The search was understandably unfruitful. There are no personality characters specific for diabetic that can precipitate diabetes, but only those common to all chronic diseases. The circle is nearly turning around, with psychological stress being shown to elevate concentrations of interleukin-6, which could in turn have a role in pathogenesis of insulin resistance and glucose intolerance (5). Presently, social psychology is applied to study psychological aspects of coping with diabetes and how to improve them for better management of diabetes (6). These include the role of psychological factors in promoting and maintaining health, and identifying correlates of health and illness. Information gleaned from these studies leads to developing techniques to modify unhealthy behaviour (6). The concept of mental well-being as an integral component of Ayurvedic system of medicine: '… the latter type of morbidity (is quieted) by spiritual knowledge, philosophy, fortitude, remembrance and concentration' (7). Similarly, the emphasis has shifted from illness-centred medicine to patient-centred medicine.

Diabetes-care providers

In tune with the need for multifaceted management, many professionals including the physician, dietitian, lab personnel, diabetes educator, as well as the family and society around the individual provide diabetes care, directly or indirectly. We shall examine the sociocultural aspects of diabetes care.

Sociocultural concerns of diabetes care

Proper management of diabetes interacts with so many aspects of life; one needs to consider the nature of medical systems, the ways of health maintenance and health seeking behaviour and finally the sociocultural factors that can influence health care behaviour (8).

Human societies have different beliefs and practices related to illness. Within the society, there is also a medical cultural system, analogous to the religious or political systems. It 'includes the ways that a person is recognized as ill,' the ways they present this illness to other people, the attributes of those the health personnel they present their illness to, and the ways that the illness is dealt with.'

However a number of components can be recognised

It is obvious that health-seeking behaviour results from panoply of medical, psychological and social factors. Not recognizing these aspects may often lead to non-compliance of medical advice. It is important to recognize the presence of these factors and take them into account when communicating with patients while treating.

Health seeking comprises many elements

The treatment is either continued or the situation re assessed to make a fresh decision.

Unlike in the West, individuals in developing countries tend to place more emphasis on how they feel and on their ability to maintain their way of life rather than on a physiological state measured by a laboratory test (9). In addition, there is a strong preference to maintain asymptomatic or mildly symptomatic conditions in diabetes (10).

A pilot study in India showed that although individuals with diabetes are fairly ignorant about the disease, they do not have many negative ideas about their disease (11). Therefore, management by health care professionals can be built on this neutral base.

A recent qualitative study on the health beliefs of diabetes mellitus among emigrant Bangladeshis evaluated the purported cause and nature of diabetes, food classification and knowledge of complications (12). Their beliefs can be summarized as follows:

One can tailor health promoting education programmes that build on beliefs, attitudes and behaviour already existing in culture, aiming at good diabetes control, preventing complications and improving quality of life.

Lifestyle and behaviour, perception of life

Adult lifestyles are laid down in childhood and adolescence. It is difficult to change social patterns encompassing diet, physical activity and risk taking behaviour like smoking, and alcohol consumption. Passive entertainment exemplified by television viewing and computer games, along with intake of meals being isolated rather than social events all contribute to disorders of lifestyle (13). Modern man prefers to rely more on pills than life style changes in order to manage his health. These human tendencies must be considered in planning future health maintaining strategies.

Viewed from a wider perspective, the objectives of health policy, ie health, healthy lifestyle and risk-taking behaviour depend on what the public perceives as the most acceptable pattern of life. It is essentially a political decision to which doctors make small if any contribution (14).

There is little purpose in detecting the disease, stratifying the risk and attempting to promote change in behaviour, if ultimately medical advise is not followed. It is essential that the doctor, who knows more about the clinical situation, should

communicate with the patient, in order to allow her a reasonable choice of participating in treatment. Ultimately, implementing prevention and treatment measures needs sustained confidence of the public and the individual patients.

The management approach to diabetes must be from a 'proactive public health perspective, rather than a reactive, traditional medical perspective' (15). Using the Social Cognitive Theory it is possible to identify risk factors, how people acquire and maintain behavioural patterns, and intervention models that preclude the need for costly pharmacological and medical intervention (16).

The biopsychosocial model of diabetes management

Managing diabetes is influenced not only by factors in each individual, but by the system that surrounds the individual. The biopsychosocial model is a new paradigm that recognises disease and behaviour are functions result from interaction among biological, psychosocial, developmental, sociocultural and ecological factors (17).

Several resources buffer the stress of managing a chronic illness in the family: family esteem and communication, sense of mastery, financial well being and extended family support system. Anticipatory coping would help in families having diabetic children. It consists of gaining knowledge about what may happen in the near future, preparing themselves attitudinally and emotionally, gaining skills and ultimately being confident that the family can successfully cope with the disease and treatment, if necessary from outside social support.

In summary the biomedical model emphasizes individual influences on diabetes management (physiological and physical). Equally important are environmental contexts, because of their influence on preventive and management behaviours. Three social contexts -- the family, the health care system and the community -- have considerable impact on persons with diabetes throughout their lives.

Stress

Stress is defined as a 'stimulus event of sufficient severity to produce disequilibrium in the homeostasis of physiological systems' (18). Stressor is the stimulus that evokes a stress response. It is perceived as stressful depending on the meaning the individuals ascribes to the stimulus and which in turn results in a sensory or metabolic process which is inherently stressful. Therefore the definition of stress and stressor depends on the person's interpretation of the stimulus as being stressful.

Lazarus defined stress in physiological terms as an 'individual's cognitive judgement that his or her personal resources will be taxed or incapable of dealing with the demands posed by a particular event' (18).

The stress response is complex, consisting of physiological, cognitive and behavioural components:

An individual's adaptation or maladaptation to persistent stress such as having diabetes mellitus makes the difference between ability or inability to cope with the disease.

Stress and Diabetes

Anxiety and depression occur in persons with diabetes more frequently than in the general population (19). In addition other problems are also common including fear of the future, restriction of leisure activities and depression partly as a result of physical disability (20).

The stress with diabetes can occur in the following stages (21).

As initial response at diagnosis As in other chronic incurable conditions over which one does not have control, the following psychological reactions can occur (22):

Denial can occur when the diagnosis is first made. As a defensive measure, one may believe that some one else's report has been mistakenly given. Denial is avoiding some situations that are restricting or uncomfortable, or something one doesn't want to do. It is a normal reaction, but it can keep one from following precautions to maintain ones health. One could deal with denial by asking:

By thinking about these questions one may have made the initial steps toward adjusting to diabetes and can be considered positive steps.

Anger is normal and healthy when there are major changes in ones life, especially when those are unexpected, unwanted or uncontrollable, such as when diabetes is first diagnosed. Expressing anger should not be hurting, but should be done in less harmful ways. When angry, ask:

Guilt occurs when one feels responsible for something wrong happening. Feelings of guilt may be realistic or unrealistic. When guilty, one can ask oneself:

Feeling guilty about events under ones control may help to change ones habits.

Depression can occur when faced with an unpleasant situation that one can't change, or can be due to fear of the unknown. Withdrawal increases loneliness and adds to depression. Depression is a normal response to diabetes and the lifestyle changes it brings. However it should not become overwhelming or last too long.

When depressed, one can ask oneself:

Depression can be tackled by talking over ones feelings or becoming involved in a special enjoyable activity or finally by making changes one at a time. If it persists one should seek professional help.

Acceptance means that one feels good about oneself as a person with diabetes. It can take time and patience, along with help from others.

Resolution and acceptance may take up to a year after diagnosis of diabetes. It requires full understanding of why diabetes sets in, its metabolic basis and is consolidated when successful glycemic control is established within the parameters of ones lifestyle (21).

Overview of coping with stress

Coping has been defined as 'constantly changing cognitive and behavioural efforts to manage specific external and/or internal demands that as appraised as taxing or exceeding the resource of the person' (26). In other words, coping is an attempt to manage the situation effectively and consists not of one single act, but a process that allows one to deal with various stressors. It can take two main forms:

Emotion focussed form of coping are emotional or cognitive changes that lead to changes in how one views stressful situations, rather than strategies to change the situations themselves. Defense mechanisms are one example, which are employed to avoid anxiety by distorting reality. Although they may alleviate feelings of anxiety and guilt, they may be harmful in the long run. People often use rationalization when they are frustrated in attaining goals, such as concluding that ones blood sugar is not under control because the spouse is not taking enough care about the diet, or that one does not have enough money to buy the 'best insulin'.

Denial or refusing to acknowledge that the stress exists is another mechanism. Defense or denial can sometimes lead to dangerous results. For example, when a diabetic refuses to accept the upsetting fact, the result is obvious.

However emotion-focussed forms of coping can be successful as positive coping strategies when they are accurate reappraisals of stressful situations. It is often necessary and more effective to confront the stressor directly, rather than the emotions evoked by the stressor.

Problem-focussed forms of coping: putting problem-solving skills to work. Problem-focussed forms of coping are ways to deal directly with the situation that will eventually decrease or eliminate the stress. In general they are the same as problem-solving strategies and the better a person is at solving problems, the more likely it is that he or she develops effective coping strategies. The strategies consist of

To illustrate the difference between the two forms of coping, let us take an example of an insulin-requiring diabetic eating sweet meat at a social function. She could cognitively reappraise the situation and decide eating 'one' sweet would not hurt (emotion-focussed approach) or generate ways in which she could avoid eating sweets in future in such situations (problem-focussed approach).

It is often assumed that problem-focussed coping is true coping and emotion-focussed coping is coping out. But it is not necessary to master a stressor to relieve stress. Emotion-focussed coping may at times be the only way to deal with a problem. For example in dealing with a diabetic in end stage renal failure the best method may well be to try to cope with his or her feelings and enjoy to the fullest the remaining life.

Resources for effective coping

Specific coping strategies to reduce stress

Besides the cognitive coping strategies alluded to above

Psychological and social effects of education

Education has been referred to as being as important as insulin, oral drugs or proper food with individuals with diabetes mellitus (30). The psychological and social outcomes of proper diabetes education can result in (31).

Social comparison and subjective health: There are studies showing subjective evaluation of health may be good predictors of mortality than even the severity of complaints judged by doctors or by individuals themselves (32).

Measures of treatment satisfaction

The outcome of treatment in acute conditions such as infectious diseases is measured by duration of illness and recovery. Diabetes mellitus cannot be evaluated similarly. The traditional measure of signs, symptoms and biochemical investigations form the doctors' 'preoccupation with the disease process' (41). Patients are encouraged to participate actively in their health promoting activities, including the decision on which mode of treatment and the degree of control that is required. All these call for new paradigms in administering objective measures such as quality of life questionnaires (41,42), well-being (43) and diabetes treatment satisfaction (44).

Application of treatment satisfaction instruments in real life

The use of QOL instruments has shown that management of diabetes correlates with positive well being and improved QOL. A study done in a bi-ethnic population in San Luis Valley showed that the individuals with type 2 diabetes rated their perceived quality of life lower than controls. Rather control and treatment strategies should reflect an understanding of the impact that diabetes has on social functioning, leisure activities and physical and mental health (46). Similarly higher levels of blood glucose were related to a decreasing quality of life, caused in part by the presence of diabetic complications (47).

In a series of more than 200 persons with diabetes, quality of life was a function of the gender and age. Women reported poorer quality of life compared to men (48). They reported lesser satisfaction with the time available to manage the disease and its influence on their daily work. Men on the other hand stated the disease had no substantial impact on their work life. Diabetic persons aged less than 40 years reported better satisfaction with the treatment and management of the disease and a better quality of life. Duration of diabetes had no significant influence on quality of life (49).

Physical training programme was also shown to improve the quality of life in adult diabetics, though the improvement lasted only during the period of supervised activity (50). A variety of explanations were offered including psychosocial -- compliance with training programme depends on several factors including group participation, support from spouse and periodic testing. It is possible that decreased support for the training group during unsupervised period caused declined well being scores. The physical explanation was that physical training benefits the physiological response to stress. The initial improvements in aerobic capacity coupled with psychological well-being scores seems to support this view.

Studies on family environment in glycemic control showed that when family members supported diabetes care regimen gave more satisfaction with adaptation to illness. Family cohesion also related to better physical function. Family system variables related to psychosocial adaptation (51).

A variety of other QOL instruments are being developed for different ages and ethnic groups (52,53). They showed that health-related quality of life did not differ significantly between rural and general US population. However when physical and mental health was rated as poor, fewer American Indians reported a limitation in usual activities (52). This can be well applied to the rural persons in India. Attempts are made to improve the sensitivity and specificity of QOL instruments to more accurately assess gains in health outcomes due to new treatments (54,55,56).

Similarly, gender and age of diabetes had a significant influence on reported well-being. Women and those aged above 58 years had poorer well being and experienced more depression. Men and those aged between 41 and 48 years reported better positive well-being. Duration of diabetes had no significant influence on well-being (49).

In general adjustment to diabetes was significantly influenced by the gender, men reporting better adjustment, especially coping and integration of the illness. Diabetic persons with normal blood glucose levels accepted the regimen of diabetes management and a medically dependent attitude towards its management (49).

There has been poorer quality of life in persons with diabetes across many continents including Sweden (57,58), Germany (59) and the United States of America (60). There is also evidence that the quality of life scale is stable over time (61) and that improved glycemic control is associated with substantial short-term quality of life benefits (62).

Attempts are on to also dissect the contribution of psychological factors such as anxiety and depression in reporting QOL scores (63), and in tailoring cognitive-behaviour treatments in patient management (64).

Diabetes management can be considered a balancing act between meeting the demands of the treatment and minimising intrusion of treatment on everyday life. The concept of quality of life offers a framework for understanding how individuals attempt to achieve this balance (65).

The following guidelines were given to encourage psychological well being in persons with diabetes (66):

Compliance with treatment

Compliance refers to adherence or cooperation -- doing as the doctor suggests or following advice to adopt attitudes concerning health or health-related behaviours. Taking medicines when one is supposed to and not discontinuing until told to do so, doing on a diet, quitting smoking -- these are all instances of complying with physicians advice. Non compliance refers to failure to follow advice -- the degree to which a patient does not adhere to what he or she is told (67).

Studies on a variety of illnesses have shown that only 40-70% of patients comply with physicians prescriptions or advice (68,69). Noncompliance can be in the form of not showing for appointments, not following advice, discontinuing medication, failure to make recommended changes in daily routine and missing follow-up appointments (66).

Determinants of compliance

The problem of compliance to treatment has been with us since antiquity. Hippocrates cautioned, 'Keep watch also on the faults of the patients, which often make them lie about taking of things prescribed'.

What are the factors the may affect compliance?

In summary health belief model emphasizes the consideration of the patients subjective states about health rather than the objective characteristics of it. It falls upon the health care workers to assess the degree to which the individual is likely to be compliant and devise ways of improving it (33). Useful 'entry points' for diabetes education include pregnancy, inter-current illness and episodes of metabolic instability, when an individual is likely to be receptive; these should be identified and exploited in ensuing better compliance and ultimately metabolic control.

In general, attempts to improve compliance were only moderately successful. There are likely to be temporal phases in treatment and patients may have different concerns that must be addressed at different points in the process. The influences of medical environment, personal preferences and beliefs are undeniable. The patient is a behaving organism, processing information and responding to different settings in ways that can influence health.

The role of the diabetes health care team includes suggesting solution to individuals psychosocial problems and guiding her to achieve a better quality of life (83).

Psychological factors in childhood diabetes

Childhood diabetes forms a small percentage of the diabetic population reported from our country (79). However to those affected it entails considerable stress in management -- the child, the family and the health-care team. Medical skills and psychosocial support are nowhere more crucial than in the management of the very young child with diabetes (84). Where trained manpower in supportive fields such as social work, psychology and nutrition is not available, the treating physician must often take on the additional role of providing psychosocial support for the child and the family. The extended family structure, which is still common in our country, offers additional family members in sharing the burden. However, managing the young child with diabetes requires empathy, tact, understanding and ingenuity.

Pain as a paradigm in dealing with childhood diabetes

The painful processes of managing diabetes in childhood can be considered as two components. (a) Physical pain of enduring hyperglycemic symptoms, and the pain of pricks from blood glucose testing procedures and insulin injections (b) emotional pain in the child, family and others of having to bear the entire management process.

Cognitive function in childhood diabetes

Diabetes mellitus is known to be associated with neurobehavioural and neuropsychological changes, involving learning, memory, mental speed and eye-hand coordination (89).

Diabetes and child development

It is always a struggle to balance the need for parental guidance in diabetes mellitus and allowing the child with diabetes to develop independence. The difficulties in coping can be categorised into the following empirical stages

They may benefit from contact with other families with young children with type 1 diabetes as part of diabetes education programmes (111). There is no ideal way of management, which must be ultimately a balance of the ideal with the practical and realistic.

Model for living effectively with diabetes

Based on a detailed psychosocial analysis of more than 200 persons with diabetes mellitus (48,49), a model was proposed for living effectively with diabetes.

The model suggests that developing an internal locus of control would enhance the effectiveness of living with diabetes.

In summary, success in dealing with a chronic unremitting usually silent condition consists in believing and putting across to the individual that 'there are no such things as incurables; there are only things for which man has not found a cure'

Acknowledgement We thank Dr G Nagamani MD DGO, for her assistance in preparing this chapter.

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