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.
"…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)
- Complex nutritional practices
- Weight management
- Frequent monitoring of blood and urine glucose
- Foot care, special precautions
- Use of oral anti diabetic drugs or insulin
- Learning technological skills such as home blood glucose
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
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
- Social conflict between migrants and habitants, accompanied by aggression
and hostility towards one another
- Greater interaction between the two follows, with resultant familiarity
and accommodative attitude. This stage is perhaps inversely related to the
original cultural background of the individual.
- The final stage, which may take years to develop, is characterised by
harmony between the groups and socialization
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
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.
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
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
- Conceptual components
- Illness classification system, composed of labels for symptoms and
- System of beliefs about possible causes [etiology]
- Means of attributing causes [diagnosis]
- Set of appropriate treatments for specific illnesses [management]
- Expectations about course of illness and treatment outcome
- Personnel Healing specialists who possess specialized knowledge or
power, may be
- Professional sector or
- Folk sector
- Behaviour components
- Norms about treatment and illness management: including culturally
appropriate sick role behaviour and expectations
- Norms about consultations with healing specialists from the professional
or folk sector
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
Health seeking comprises many elements
- Identification of symptoms and physical changes
- Perceiving these changes as being significant
- Deciding to treat or not to treat
- Deciding the options of management, including self or no treatment
- Choosing sources of treatment
- Acting on choice and evaluation of outcome
The treatment is either continued or the situation re assessed to make a fresh
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:
- Diabetes is caused by sweet things, a Western diet, and stress
- Diabetes is chronic and incurable, but its effects can be lessened by
changes in lifestyle
- Dietary modification is essential for diabetes control, and efforts must
be made to prepare special food for the family member with diabetes
- A person with diabetes should aim to lose weight if overweight
- Physical labour which produces sweat is beneficial to health
- Sugar, fatty food and solid fat are harmful
- Complications may occur if diabetes is poorly controlled
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
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
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
- The physiological component activates the autonomic nervous system
and elicits a three stage general adaptation syndrome which can be
- Alarm reaction, subdivided into
- Shock phase or the initial and immediate response
- Counter shock is how the body rebounds to mobilise resources
- Stage of resistance, which is the adaptation where one tries to
fight back the stress and finally
- Stage of exhaustion, seen after fighting against extreme
- The cognitive component represents the individual's evaluation of
the situation. Coping style is an example of cognitive coping.
- The behavioural component is the overt behavioural response to the
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
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
- What does diabetes mean to me?
- How do I know if I have trouble accepting my diabetes?
- Am I avoiding my treatment plan?
- Am I avoiding telling others I have diabetes?
- What can I do if I have problems living with diabetes?
- Can I talk it out with someone else?
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:
- Why am I angry?
- Is it my diabetes or something else?
- Do the same circumstances make me angry all the time?
- What do I do when I am angry?
- Do I shout at my spouse or children?
- Do I stop taking care of my diabetes?
- What could I do when I am angry?
- Can I do something to express my anger without hurting others or myself
such as talking it over with family, friends, or perhaps yelling in an empty
Guilt occurs when one feels responsible for something wrong happening.
Feelings of guilt may be realistic or unrealistic. When guilty, one can ask
- Why am I feeling guilty?
- Is it something I did which affected my diabetes or is it something beyond
- Is my guilt realistic?
- What do I do when I feel guilty?
- Do I worry too much?
- Do I try to make positive changes?
Feeling guilty about events under ones control may help to change ones
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:
- Why do I feel depressed?
- Is it because I have diabetes or is it due to some other reason?
- How am I reacting because of my depression?
- Am I withdrawing from activities, sleeping less or more, eating less or
more, or frequently complaining about little aches and pains?
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).
- Restriction of daily life patterns: regimentation in life style, fear
of hypoglycemia and dependency induces anxiety. Close follow up by diabetes
care team, education and reinforcement help in normalizing attitude towards
daily care. Understanding the rationale and acquiring skills can buffer the
- Sexual dysfunction as an expression of stress: besides vascular and
neural dysfunction leading to sexual dysfunction in men, the stress can also
result in reversible sexual dysfunction. Knowledge about diabetes is poor.
Misconceptions abound regarding sexual function in diabetes. A combination of
the two is a potent source for sexual dysfunction, in a vicious cycle (23).
Similarly, shift work and adverse work conditions also contribute to sleep
disorders and sexual dysfunction. A comprehensive approach is imperative in
managing the situation.
- Sleep disturbances are four times common in diabetes mellitus compared
to controls (24). The stress of having the disease, along with physical
symptoms, psychosocial factors including shift work may all contribute to
sleep disturbances (25).
- Apprehension of complications and likely disability Onset of
complications brings on extra psychosocial problems. The single deciding
factor is the degree of handicap resulting from complications, and how well
the individual can cope with the resulting limitation. The health care team
along with the individual's family and significant others forms the major
source of support in coping.
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:
- Focus on the emotional effects of the stressors
- Focus on solving the problems of stressors
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
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
- Identifying the stressful problem
- Generating possible solutions
- Selecting the appropriate solution and
- Applying the solution to the problem to eliminate stress.
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
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
- Good health to money An ability to cope depends on the nature of the
stress and also on resources available for 'background support' to the
individual. Several major coping resources have been identified
- Health and energy The stronger and healthier people are, the longer
they can cope with stress without exhaustion
- Positive beliefs A positive self-image and a positive attitude are
especially significant coping resources. Such positive belief can come from
a belief in oneself, in others (eg doctors who can help) or in a just and
helpful God. People who feel they have an internal locus of control, i.e.
a feeling they have significant control over the events in their lives,
tend to cope better than those who feel they have no control (27).
- Social skills The better one's social skills, the less the stress.
Social skills also help in communicating ones need, to enlist help and to
- Social support is an important coping resource, be it from families,
friends or social organizations such as diabetes self care groups. Support
groups help not only by providing other people for relief, but also because
it is possible to learn techniques for coping from others in similar
situations (28). Diabetes education programmes, which are now more informal
and interactive, offer forum for interaction. Courses developed in India
combine education with counselling and psychological intervention
- Material resources are invaluable in coping with stress, although
the adage goes 'money isn't everything'; it is something when one has to
purchase medicines, blood glucose meters, sticks or undergo other tests in
managing diabetes. In facing minor or major stresses, people with money who
can use it effectively generally fare better and experience less stress than
those without money.
Specific coping strategies to reduce stress
Besides the cognitive coping strategies alluded to above
- Appraising situations rationally and realistically
- Maintaining the conviction that one is in control of ones life
- Focussing on the positive aspects of stressful situations and learning to
solve problems with knowledge, other active methods are available and
- Relaxation is one of the most effective means to deal with stress. It can be practiced by a variety of techniques including biofeedback,
self-hypnosis, meditation and progressive relaxation. The technique is as
- Sit in a comfortable position with head supported
- Start breathing slowly and deeply
- Let the entire body go limp and try to let go of tension that remains.
Visualize the body getting more relaxed
- Systematically tense and release each part of the body, beginning with
- Exercise helps in reducing the negative effects of stress, besides the
positive effects on cardiovascular fitness. Regular aerobic exercise is good
for relieving stress as well.
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).
- Decreased fear of diabetes and its complications
- Decreased sense of helplessness
- Better participation by individual in prevention and treatment
- Decreased social ostracism as information about diabetes as a metabolic
aberration is transmitted to the family, teachers, employees and society in
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).
- The distress due to the disease seems to be an important factor
contributing to a subjective sense of health. Individuals who experience
psychological distress tend to view life pessimistically. In addition to
objective health status, psychological distress may also have a negative
effect on subjective health evaluations.
- In addition, individuals use various cognitive strategies to maintain a
positive image of their own health (33).To achieve this, they compare
their own health with that of others, which may serve motivational rather than
evaluational purpose (34). The comparison may be
- Downward comparison ie, individuals prefer comparison from which they
expect a favourable outcome. In stress individuals compare themselves with
others who are worse off to restore positive self-esteem. Several processes
occur in this, including selectively choosing comparison with others,
selecting certain dimensions for comparison, and cognitively creating
comparison others in relation to whom they expect a favourable outcome.
Downward comparison leads to a perception of being better off than similar
others. Relative evaluation is used to refer to the degree to which the
individual feels he or she is doing better or worse than others in the same
situation. Although biased, relative evaluation may contribute to well-being
among individuals with serious diseases.
- It was shown that the above comparisons occurred, and that men reported
slightly fewer complaints and less psychological distress than women.
- Similarly optimism could have implications for the manner by which people
regulate their actions. It is significantly associated with coping, symptom
reporting and negative effects (35).
- Normal and non-anxious controls did not show evidence of illusory
biases (ie illusory positive terms avoiding negative effects), those who were
repressed rated themselves as prone to experience negative events. Thus in
judgements involving negative material repressive persons may be contributing
to findings of illusory biases (36). Unrealistic optimism is well documented:
the belief that one is more likely to experience please events and less likely
to experience negative events than ones peers.
- Some personality variables, such as optimism and self-esteem have positive
influences on physical health (37), and must be encouraged.
- Thus more attention should be paid to psychological processes and sources
of social information, which influence the patients' well-being (38).
- Work and family roles in women With increasing urbanisation and more
women joining the work-force, it is pertinent to define whether the
'work-role' in addition to the 'home-maker role' increases the risk of
physical and mental health problems or whether it improves woman's health.
This factor becomes more importance when chronic diseases such as diabetes
coexist. In relation between role quality and mental health women who reported
high levels of job quality, partner quality or parent quality reported low
levels of psychological symptoms (39).
- 'Self regulation' Features distinctive of a healthy personality were
autonomy, emotional independence and self-regulation. Self-regulation can be
described as the ability to actively regulate ones life without a degree of
emotional dependence on other people that acted in such a way as to thwart
ones needs and aims (40). Self-regulation constitutes a flexible
autonomous way of solving problems and getting over difficulties. One must
therefore not focus exclusively on with physical risk factors such as
cigarette smoking and exercise, to the exclusion of psychological factors. For
as Sir William Osler said 'It is very often much more important what person
has the disease than what disease the person has.'
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).
- Quality of life questionnaire (Diabetes quality of life questionnaire;
DQOL) was originally developed for use in DCCT to evaluate the discomfort of
intensive insulin therapy with conventional therapy. It was assumed that
additional demands in intensive therapy including reeducation, multiple daily
insulin injections or pump, frequent blood glucose monitoring, greater need
for adjustment of food exercise and insulin could affect the quality of life,
and could affect the willingness to follow intensive treatment. The
questionnaire evaluates the satisfaction, impact and worries associated with
diabetes treatment. It can be used in both type 1 and type 2 diabetic patients
using insulin, or diet and oral hypoglycemic agents (42). It is acceptable and
easy-to-use that is not difficult to understand.
- Well being questionnaire The well being questionnaire was originally
designed to provide a measure of depressed mood, anxiety and also aspects of
positive well-being in a WHO study evaluating new treatments for managing
diabetes (45). This questionnaire was specifically designed and scored so that
diabetes related symptoms (such as tiredness, loss of appetite and libido) are
not mistakenly attributed to depressed mood. Even though the original
questionnaire was developed for adults with insulin-treated diabetes, it can
probably be suitably used for people treated with diet alone (45). It is now
called the WHO (Bradley) Well-being Questionnaire. It includes each of
four sub scales, Depression, Anxiety, Energy and Positive Well-Being. The scale
is useful in determining the incremental benefits to well-being of new
treatments designed to improve quality of life rather than just blood glucose
- Diabetes treatment satisfaction questionnaire (DTSQ) was specifically
designed to measure satisfaction with diabetes treatment regimens in people
with diabetes (44). It is intended to measure satisfaction with treatment and
is not designed to measure satisfaction with other aspects of the diabetes
care service. It is a measure of psychological outcome to measure benefits of
new treatments that can improve patients' quality of life rather than just the
blood glucose control. This scale is claimed to be useful in individuals who
are treated with diet and exercise alone. However DTSQ scores should not be
interpreted in isolation, but should be corroborated with other measures of
metabolic control. Or else patients are likely to desire a treatment
regimen that is 'easy' to follow, but which does not achieve metabolic
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
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
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
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):
- Improving communication
- Planning a comfortable and approachable clinic environment
- Continuity of care with a particular and nurse
- Maintaining confidentiality during consultation and later
- Encouraging patients to express their concerns by using open rather than
- Encouraging patients questions and discussion
- Proving accurate information and explanations as needed
- Protecting patients' self-esteem
- Respect individuals with diabetes and their privacy
- Being non-judgmental
- Avoiding treating the patients as if they were a problem rather than the
high blood glucose level or other specific cause for concern
- Recognizing that diabetes is only one part of an individuals' life
- Enabling people to manage their own diabetes and problem-solve
- Responding to individuals' differing needs
- Establishing the needs of each individual with diabetes and his or her
- Having available a variety of treatment options and opportunities to
support differing needs of patients and families
- Tailoring education and treatment to the needs of the individuals and
- Recognizing that what works well for one person may not be acceptable to
- Helping patients learn about their own individual responses
- Recognizing that individuals respond differently to apparently similar
- Discussing with patients variation in their response to different
- Asking about patients' feelings and coping strategies
- Encouraging patients to learn from their own experiences
- Helping patients to anticipate and cope with the effects of stress
- Helping to motivate self care
- Monitoring of psychological well-being
- Identifying dissatisfaction with treatment
- Identifying patients who are depressed or anxious
- Establishing the reasons for impaired well-being to making appropriate
changes to improve matters
- Identifying patients who may need support from psychological or
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
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?
- Aspects in the prescription itself
- Too complex a regimen (eg take two pills every four hours, a white pill
after meals and at bedtime and two pills two hours after each white pill)
- Compliance tends to decrease with increasing length of treatment (a
prototype of diabetes management)
- If financial cost of complying is great compliance will be less likely
- The greater the effort required for compliance or the greater the
lifestyle change needed, lower compliance is likely. In other words a number
of social or environmental factors are likely to influence on compliance
- Personality and background Personal attributes may affect compliance.
Using multiple background variables, Korsch et al could identify almost 90% of
non compliant patients (72), by taking the educational status, income and
social status into consideration.
- Satisfaction and compliance Patients satisfaction with the physician
can also determine compliance. Satisfied patients tend to be more compliant.
The satisfaction will be influenced by the nature of interaction
- Formal and business like interactions (associated with
- Passive interactions (associated with dissatisfaction)
- Ways in which information is provided (antagonistic and authoritarian
associated with dissatisfaction )
- Physicians ability to reduce tension (associated with satisfaction)
- Physicians communication skills (satisfaction with good
- Patients expectations with doctor (dissatisfaction with physicians not
providing the expected information)
- Physicians nonverbal skills
- Comprehension and compliance A failure on the part of patients to
follow doctors advice could be due to genuine difficulty in understanding and
remembering what they are told (73). Three determinants affect doctor-patient
- Material presented by doctor being too difficult to understand
- Lack of even elementary medical knowledge in patients
- Patients having misconceptions that are so incorrect as to interfere with
- Physician and patients compliance Rosenstock suggested a health
beliefs model that describes the role of the physician in patients compliance
- The patients readiness to act or perceived necessity of action: this
is determined by the perceived severity of the disease and the acceptance of
the illness with its consequences .If a patient does not believe an illness is
severe or does not believe that he or she has a good chance of becoming ill as
a result of the disease, readiness to act will be low (eg risk of getting
renal failure with poor glycemic control). If on the other hand the illness is
seen as severe and the patient believes there is a good chance of coming down
with it, readiness to act will be higher (eg risk of getting hypoglycemia if
food is delayed after taking anti diabetic medicines).
- The estimation of costs and benefits of compliance: In order to comply
the patient must believe that the advocated regimen will be effective and that
the benefits of following it outweigh the costs. Side effects, disruption in
lifestyle, unpleasantness and other negative aspects must be countered by
benefits of treatment -- reduction of severity or susceptibility to an
- The needs for a cue to action: ie something that makes the subject
aware of potential consequences. They may be internal signals (pain,
discomfort) or external stimuli such as health campaigns or screening programs
to initiate health behaviours.
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.
- Measures to improve compliance Based on factors influencing
compliance, the following measures were tried to improve compliance
- Educational campaigns to correct erroneous beliefs about health or
illness have not been particularly successful (75)
- Personalization of treatment regimen When designing the treatment to
fit an individual's lifestyle, the degree of change required to comply is
minimized (70). At the level of an individual these tailored attempts are
easier to comply with encouraging results. This alone does not address the
whole range of noncompliance.
- Improving physicians behaviour Attempts to make the physicians more
informative, and adopt better communicative skills yielded better patient
compliance. Physicians must address patients' worries and concerns, provide
clear, jargon-free information and take on a caring attitude.
- Improving patient-doctor communication Programs that provide
information about problems patients face in trying to adhere to a regimen and
focus on changing their interpretation of their relapses was successful in
- Supervision of adherence to regimen Patients who comply with medical
treatment would feel good when they visit their physician. More frequent
visits to the doctor could improve compliance, as the patient seeks to avoid
the aversive consequence of having failed to do what was supposed to be
- Self monitoring This method was useful only when records maintained by
the patient were reviewed by medical personnel. Compliance was poor when there
was no monitoring and patients were left on their own
- Gender differences in compliance Since compliance in diabetes is
related to a host of factors, including hospital visit, dietary regulation,
blood tests, regular medications and exercise, the degree of compliance is
likely to differ between the sexes (75). Compliance is better in
persons recruited for a research protocol compared to the general out patient
department, because of better interaction with the diabetes care team. However
in routine hospital visiting persons with diabetes, compliance with diet and
exercise was better in men than women (76,77).
- Gender differences in childhood diabetes
- Access to diabetes care Among type 1 diabetic persons at Diabetes
Research Centre Chennai, the proportion of females was higher in the high
income group (>Rs 2000/- per month; 115/119; 0.967) compared to that in
the low income group (<Rs 2000/- per month; 178/202; 0.88) (78).
It is possible that the difference could at least be in part due to
difference in access in medical care between boys and girls (79,80).
- Psychosocial aspects Childhood and adolescence being a period of
intense change, compliance is likely to be poor during this time. At AIIMS,
more girls were likely to be regular than boys in their contact and
follow-up with diabetes education programme (81).
- Parenting In the management of a child with diabetes, the mother
tends to carry a disproportionate share of the burden of diabetes care
(82). When fathers do not participate in the initial period of
diabetes management, they feel out of touch with the complexities of its
management. Therefore care should be taken to distribute the responsibility
between the two parents (79).
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
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
- Concepts in the coping with pain Pain has many components including
physiological, sensory, affective, behavioural and cognitive (85).
- Nociception is the initial physiological signal that alerts the CNS to
the introduction of an aversive stimulus
- Pain involves the sensory perception of this signal
- Suffering is the affective reaction to the painful event, such as
feelings of fear or distress
- Pain behaviour includes all actions performed by the individual in
response to pain.
- Child's conceptualization of coping with pain The way a child views
the value, function and consequences of pain may impact the coping process. A
child who focusses on potential secondary gain may view pain as an opportunity
to gain sympathy or a reward, which may undermine attempts to cope effectively
and ultimately lead to a maladaptive outcome. On the other hand a child who
views a medical procedure as unnecessary discomfort or punishment may
catastrophize, whereas a child who understands the rationale or necessity of a
procedure may try to feel better by focussing on its benefits. (85).
- Concept and components of the stressor The stages of stressor were
divided into three phases: (a) anticipation or appraisal (b) encounter and (c)
recovery (86). There are many aspects of stressors in pain and
discomfort, such as
- Parenteral influence The way parents react to a situation influences
the reaction in the child. Children with anxious mothers tend to exhibit
greater anxiety in their presence, whereas children with low-fear mothers
show more distress in their absence. It is essential to understand the
parental reactions to stressors, their attempts to promote coping, and
children's coping responses.
- Health care providers influence Besides, the impact of health care
providers must not be neglected. They may vary in factors such as
familiarity with the child, behaviour during the interview, expectations of
the child and her experience.
Appraisals are beliefs that presumably
influence adjustment to a stressor, the selection of coping strategies and
the nature of the outcome (85).
Primary appraisal A child may view management restrictions in daily
living with diabetes as a punishment. Threat appraisals may be reflected as
potentially interfering with opportunities to participate in activities or
sports with peers. Primary appraisals may influence children's approach to
coping: a child who perceives an injection as threatening may be more likely
to adopt an antagonistic coping response, whereas a child who appraises it
in terms of its curative value may engage in adaptive coping. This also
depends on the age of the children. Adolescents were more likely to focus on
the implications of the disease, whereas children were more likely to focus
on the symptoms. As children move from magical thinking to a more accurate
understanding of illness and treatment, they may acquire a greater sense of
responsibility for their health and may in turn, engage in self-control
Secondary appraisal Secondary appraisal is the judgement about the
extent to which one can influence the outcome of a stressful event. In
children with diabetes, it was shown that greater perceived coping efficacy
was associated with more favourable illness-related adjustment and fewer
Parent child alienation One of the major fall-outs is
diabetes-related conflict and possible between parents and children. It
could start out as erosion of self-esteem in response to frustration over
the child's inability to adhere to the diabetes treatment and or to
consistently achieve euglycemia (88). Repeated family conflicts over
non adherence to treatment or severe parental or child distress or depression
over blood sugar readings should be indications for professional
psychological and family counselling.
- Cognitive appraisal of coping
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).
- Frequency of cognitive dysfunction Children with diabetes were shown
to have greater psychological disability compared to children with other
chronic disorders (90). Cognitive dysfunction identified by
electro-physiological tests may antedate abnormal psychometric tests (91). Lower performances on IQ scores were demonstrated one year after onset of childhood diabetes when associated with ketonuria and hospitalizations (92), along with other mild neuropsychological dysfunction, such as information processing speed, acquisition of new knowledge and conceptual reasoning (93). Similarly there was an inability to express emotions verbally -- alexithymia, as a form of emotional suppression (94).
- Studies in India There are few published Indian studies except for the
report from Madras (now Chennai) (95). Children with diabetes scored
less compared to controls on all scores: Wechsler's coding, digit span test
and Raven's colored progressive matrices. However, there was no correlation
with duration of diabetes or early onset of diabetes. It was concluded that
the lower scores were due to psychosocial factors in addition to metabolic
control. In a recent study at our centre, it was shown that cognitive
function was poorer compared to control children on reaction time and memory.
Sixteen children with diabetes (8 boys, 8 girls) aged 8-16 were compared to 32
age and sex matched controls. Diabetic children had longer reaction times than
controls (96). Similarly they scored poorly on memory scales including memory
span, logical memory and associated learning (97). However there was no
statistically significant difference in intelligence quotient between children
with diabetes and controls (98).
- Cause and course A variety of causes were implicated in cognitive
dysfunction including central nervous system vascular or metabolic
dysfunction, emotional influence of the chronic illness on the intellectual
and educational development or a central neuropathy (analogous to peripheral
neuropathy) (99,100). There is strong evidence for recurrent hypoglycemic episodes being responsible for this disability in cognitive function (89,101,102,103). Hyperglycemia has also been implicated for cognitive dysfunction (104). Other associated factors include duration of illness, age of onset, episodes of ketonuria, ketoacidosis and hospitalization (105,92). The role of social impact of the disorder must not be lost sight of (106,107).
- Significance of cognitive impairment Children with diabetes missed
school more often, performed more slowly and obtained lower scores than
controls (108). Cognitive impairment is associated with increased risk
of learning problems (109).This underscores the necessity for
ascertaining educational skills in diabetic children when planning diabetic
treatment regimens, especially with early onset long duration diabetes, who
may be especially vulnerable (110).
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
- Infancy and toddlers Even though childhood and infantile diabetes is
uncommon, when it occurs, is a challenge to manage (79). The difficulties
comprise irregular meal schedule, inability of the child to understand the
need for painful injections and testing, and finally conflict with other
siblings who may resent unequal sharing of parental attention. In addition
they are at greater risk for severe hypoglycemic episodes. The main concerns
are sharing treatment responsibilities between parents and preventing severe
hypoglycemia. The very young child does not have the cognitive development to
perceive the need for painful procedures and is likely to resist them. Parents
are likely to be subjected to intense emotional drain, and often require
psychosocial support along with medical advice (82). They are likely to
pass through the same stages of emotional reaction at the time of diagnosis of
their child's diabetes: denial, anger, guilt, depression and finally
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.
- School age child Between the ages of six and 11, the child must master
diabetes care regimen, modify his diet while completing common developmental
tasks such as latency, industry and concrete cognition. Major negative
feelings about having diabetes focussed on being different, feeling alone with
friends or family, the inconvenience and extra time diabetes treatment takes,
having to ear when not hungry and not being able to eat sweets whenever others
do. With education and training, they tend to feel a sense of achievement and
pride when they can test their own blood glucose and inject themselves
insulin. Most children with normal psychosocial development adequately cope
with diabetes, although some may have difficulty. Successful initial
adaptation to diabetes depends on a family environment that is cohesive and
organised, and where expectations of parents were consistent and clear. School
age children must comprehend the disease, have positive attitudes toward
themselves and their diabetes, and get help and guidance from their peers,
adults and their family. The critical periods when children are most receptive
to knowledge and implementation of diabetes management skills have not been
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
- The model rests on the fundamental issue that metabolic control is
essential to live effectively with diabetes. Even isolated instances of high
or low blood glucose levels can affect the emotional well being. Depression,
anxiety, coping abilities, stress and host of other responses can be
- Gender differences become crucial when one has to learn to live
effectively with diabetes. Women need to develop a positive attitude towards
the disease and its management. This is crucial especially in those
responsible for household tasks, which may render it difficult for them to
follow their own diets, medication and eating schedules. They need to realize
that the disease can be controlled and it is they themselves who have to do
so, undoubtedly, with support from others such as their physicians and family
- The age of the individual with diabetes is also important. Older people
need to reconcile themselves to the fact that diabetes would not go away but
that it could be managed satisfactorily with a disciplined lifestyle. They
should be careful not to allow depression and anxiety arising out of age to
overwhelm their psychological well-being. They must learn to consider diabetes
as another problem, which needs to be carefully handled.
- Adoption of an independent approach in the management of the disease can
enhance the effectiveness of living with diabetes. In many cases, especially
type 2 diabetes, the patients themselves will be responsible for management of
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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