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Diabetes in Children (return to main diabetes page)
The Child Advocate is devoted to children and the parents and professionals that work with them. This chapter from Dr. Plotnick's book is presented to you with permission from the author and publisher. No part may be reproduced without specific permission from them. The information presented at this site is for general use only and is not intended to provide personal advice or substitute for the advice of a qualified professional. If you have questions about the information presented here, please consult a physician skilled in diabetes management, the resources listed or other professional in your area.
Chapter
Eleven - Psychological Issues
Drug
dosage: The authors and publisher have exerted every effort to ensure that the
selection and dosage of drugs discussed in this text accord with current
recommendations and practice at the time of publication. However, in view of
ongoing research, changes in governmental regulations, and the constant flow of
information relating to drug therapy and drug reactions, the reader is urged to
check the package insert of each drug for any change in indications and dosage
and for warnings and precautions. This is particularly important when the
recommended agent is a new and/or infrequently used drug.
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Johns Hopkins Press Ltd., London
This
is a tumultuous time in medicine. While science continues to provide new tools
to treat disease, the framework for treatment is shifting. The traditional roles
of primary care clinicians and specialists are being redefined. These are
far-reaching changes that are transfiguring the face of medicine and patient
care in America in the 1990s.
Within this context, the role of the primary care clinician in caring for
children and adolescents with chronic diseases such as Type 1 diabetes
(insulin-dependent diabetes mellitus) is rapidly changing. This comes at a time
when the evidence for the importance of good control of diabetes has never been
more clear and compelling. Patients whose diabetes is in good control have a
better sense of physical and psychological well-being and a reduced risk of
acute complications, including potentially life-threatening ketoacidosis. Also,
in 1993, the results of a 10-year national study, the Diabetes Control and
Complications Trial (DCCT), clearly showed that tighter blood glucose control
could lower the risk of long-term complications, specifically retinopathy,
nephropathy, and neuropathy.
A second factor is equally important. A growing body of research looks at
possible “cures” for Type 1 diabetes. Some of these projects are exciting
and may lead to at least a temporary “cure,” perhaps in the next 10 to 20
years. The knowledge that a cure could happen in the lifetime of many patients,
and the proof from the DCCT that control leads to fewer long-term complications,
makes this a special time in history and increases clinicians’ responsibility
to help diabetes patients achieve the best control possible over their disease.
We are currently witnessing a shift from management of chronic disease by
a specialty team to management by the primary care clinician. An important role
will remain, however, for the specialty team. The best care will be provided
when the primary care clinician establishes a productive and interactive working
relationship with the specialty team and develops a thorough understanding of
when diabetes management can come from the primary care provider and when
consultation or referral is necessary. This book will provide guidelines for
that, as well as a comprehensive patient management plan that can be applied to
the individual needs of each patient.
Beginning in the 1970s and continuing through the 1980s, physicians
treating children with Type 1 diabetes worked to develop specialty teams to
address the multiple needs of their patients. This coincided in the late 1970s
with the era of modern diabetes management. This era began with the availability
of accurate home blood glucose monitoring and the measurement of glycosylated
hemoglobin (also called glycohemoglobin, glycated hemoglobin, and HbA1C). These
advances enabled children with diabetes and their families to begin to take
control of their diabetes and evaluate their status in a way that had never
before been possible.
The specialty teams flourished in medical centers and large practices,
fueled by the desire of practitioners to pair the technological advances that
enabled home monitoring with the best information and education that they could
provide to their patients. Specialty teams for Type 1 diabetes typically involve
a nurse educator, a dietitian, a physician (who is usually an endocrinologist),
and a mental health professional (who is usually a psychologist or clinical
social worker).
An increasing realization of the burden of chronic pediatric disease and
the complex educational needs of patients and their families highlighted the
importance of the team approach. This approach is also used for the management
of other chronic diseases in children, such as cystic fibrosis and
gastrointestinal conditions such as Crohn’s disease. There is no other
condition, however, that demands as much home management as does diabetes.
The management routine for children with Type 1 diabetes can be
emotionally draining and tremendously time-consuming. The work can seem
never-ending. A wide constellation of factors in everyday life influence a
child’s blood glucose levels, and they change frequently--not even hourly, but
from minute to minute. Stress, changes in routine, traveling, sleeping late,
eating late, going to parties--these all affect blood glucose. The use of
different types of insulin will produce different peaks and valleys in insulin
levels. What’s right on Monday may not be right on Tuesday. If a blood glucose
level is too high, that is a problem; if it is too low, that is also a problem.
A balance must constantly be maintained.
In addition, the consequences of wrong decisions or missed judgments may
be threatening to health. Missing a dose of an antibiotic or a session of
physical therapy usually poses little risk for a child with medical problems
requiring these treatments. For the child with diabetes, missing a day of
insulin is dangerous, as is receiving too much insulin.
Through the 1980s, specialty teams flowered and built a solid track
record of competent and effective treatment, learning that nurses and dietitians
were the key to helping patients and families manage Type 1 diabetes. One
problem with this emphasis is that the role of primary care clinicians in
chronic disease management tended to fade into the background. Fewer and fewer
primary care clinicians felt comfortable managing Type 1 diabetes, and they
deferred to the specialty teams.
This trend, of course, is now coming up against the changing face of
medicine--the expanding presence of managed care and managed care’s renewed
emphasis on the role of the primary care clinician. There have been dramatic
changes in recent years, with financial support for specialty teams diminishing
and primary care clinicians expected increasingly to assume chronic disease
management. This trend is likely to continue in the years to come.
There are several ways in which the specialty team and the primary care
clinicians can work together, and it is likely that each practitioner will
employ different systems for different patients, based on a number of factors
(see table 1). These include the needs of the patient and family, the primary
care clinician’s skills and needs, the patient’s level of comfort, the
patient’s success in meeting defined goals, the patient’s managed care
organization or insurance plan, and the geographic area.
A range of examples illustrates how such collaborations can work
effectively:
One example includes a full evaluation by the entire specialty team once
a year, including HbA1C measurement, update on research, complication screening,
and education and dietary update. If there are no issues impeding good control
and the HbA1C is in the target range, the primary care clinician will take over
for the interval, with another full evaluation by the diabetes team scheduled in
a year. If there are problems related to control--for example, if the family is
not receiving the necessary education or the patient’s glycohemoglobins are
too high--then the team would see the patient more often.
Alternatively, the primary care clinician might provide all Type 1
diabetes management or might refer the patient for specialty team consultation
only as needed for a specific problem (i.e., poor blood glucose control) and
provide all interim Type 1 diabetes management.
In another scenario, the specialty team would see the patient every 3
months and do all Type 1 diabetes management, including management of day-to-day
problems and sick days. This approach is usually most suitable to a large
medical center where patients have relatively easy geographic access to the
specialty team.
A customized combination of the above approaches will probably yield the
best working relationship for most patients and their care providers. The best,
most complete, and most flexible strategy for Type 1 diabetes management may be
co-management or collaborative management, with the work being shared by the
primary care clinician and specialty team, each of which would assume
responsibility for specific aspects of helping a particular patient and family
meet their goals. One general principle for primary care clinicians is that if
goals are not being met, the patient should be referred for consultation. This
is also applicable to the specialty team, who should consult with other
specialists in the cases of patients who are difficult to manage and
consistently have trouble meeting their goals.
The goal of this book is to provide the information that primary care
clinicians need to treat children and adolescents with Type 1 diabetes. This
includes an understanding of the family issues that are involved, because family
involvement is an integral part of diabetes management for children. Information
about the specific services provided by each member of the specialty team will
be presented in a way that will be useful and valuable for primary care
clinicians, and day-to-day issues of management as well as acute situations will
be addressed.
How to Use This Book
This is a practical how-to book, and we have attempted to present the
information in as useful a form as possible. The many aspects of Type 1 diabetes
care are interrelated. You will note that the message about the importance of
good control and the descriptions of methods to achieve it are repeated
throughout the book--however, different considerations are emphasized in
different chapters. To make it easier for the clinician to focus on the skills
and medical tasks required for the child or teenager being treated, we have
organized the content around various points in the diabetes spectrum of care and
the age of the child. This approach also leads to some repetition, although the
reader is asked in some instances to refer to other chapters for more detailed
explanations of concepts and techniques.
A few notes about style: First, equal numbers of girls and boys develop
Type 1 diabetes. We have tried to balance the use of feminine and masculine
pronouns, alternating them throughout the text. Second, when we speak of
clinicians, we are speaking of the variety of health care providers who interact
with children and teenagers with diabetes and their families. This includes--but
is not necessarily limited to--pediatricians, internists, family physicians,
nurse practitioners, nurse educators, physician assistants, dietitians and
nutritionists, and mental health counselors. When we use the term clinician, we
are referring to anyone who is providing the care in the circumstances being
discussed, and we usually do not specify whether we are referring to a primary
care clinician or specialist, or to a nurse or physician, since care may be
rendered by either one or both. In the following pages, we refers to members of
the Johns Hopkins pediatric diabetes team or, more generally, to clinicians
treating children with diabetes.
We
wish to thank the following people, without whom this book would not have been
possible: Jackie Wehmueller, our editor at the Johns Hopkins University Press,
whose support and encouragement since the inception of this project are deeply
appreciated; Loretta Clark, RN, CDE, for painstakingly reviewing our manuscript,
and for her expertise in caring for patients and their families; Richard Rubin,
Ph.D., CDE--on whose principles the chapter on psychological issues is based--for
his contributions to the Johns Hopkins diabetes program; our families, for their
understanding and continuing support during our work on this project; and
children and adolescents with diabetes and their families, from whom all our
real knowledge comes and who are an ongoing source of inspiration. We owe
special thanks to the individuals who participated in the discussion in chapter 12.
In addition, we appreciate the input from Christopher Saudek, M.D.;
Lauren Bogue, M.D.; and Carol Parnes, M.D., and Michael May, M.D., and their
office staff.
Twenty-five
years ago, when I (L.P.) began treating children with diabetes, we were dealing
with imperfect gauges and uncertain management. Monitoring was based on urine
testing. The children would dip their urine three or four times a day to check
for glucose or ketones. Glucose measures ranged from negative to 5 percent,
ketones went from negative to large, and that was all that patients could
ascertain. No highs, no lows. Patients had no way of measuring hypoglycemia,
except by symptoms. To get a blood glucose level, the blood had to be sent to a
laboratory, and sometimes it took hours to get results.
By today's standards, management was very loose. Most patients took one
or two insulin shots per day, but it was very hard to judge what doses to give.
With no glycohemoglobin measure, we had no precise idea what the patient’s
level of control was. We really were shooting in the dark. In some sense,
management was easier, because with fewer known variables to factor in, there
was simply less to do. All that was required of patients was that they watch
their diets, eat the same amount at the same time every day, avoid simple
sugars, take their insulin shots, and check their urine several times a day.
Many people hated checking urine and didn’t even do that. Insulin came in two
different strengths--U-40 and U-80--each of which had its own size syringe,
leaving room for the error of using the wrong syringe and injecting half or
double the intended dose. In addition, insulin was not as highly purified as it
is today, leading to more frequent skin lipoatrophy or hypertrophy from the
injections.
With modern management, patients have better diabetes control and fewer
complications. We can’t tell patients that if they keep good control, they
have no risk of complications, just as we can’t tell someone that if he is a
good driver he has no risk of being in a traffic accident. But the results that
are now available and are still emerging from ongoing clinical trials make it
clear that our intuitive feelings that better diabetes control means better
quality of life (and perhaps longer life) are scientifically valid.
I became a pediatrician because I liked the fact that in pediatrics I
could offer an intervention that could substantially change someone’s life. As
a pediatrician I was drawn to the subspecialty of endocrinology because the
endocrine hormones are so critical to so many aspects of human life and
development, and the medications in endocrinology are often replacements for
normal body hormones.
I was also attracted to the psychological and behavioral aspects of
endocrine problems. In pediatric endocrinology, one must consider the whole
child in the whole family. The chronicity of most endocrine conditions ensures
ongoing contact with the patient and family. Clinicians become part of the lives
of these families. Many of our children, particularly diabetes patients, “age
out” of our practice after we have followed them through childhood and
adolescence.
The children we treated in the early 1970s went through the
revolutionizing of diabetes care through home blood glucose monitoring and
glycohemoglobin measurement. More than ever, these changes emphasized the family
context of care. Home monitoring shifted the responsibility of diabetes
management from the health care provider to the family. There are many variables
that affect blood glucose, and there are many variables that affect an
individual’s ability to live with diabetes. These are best known and best
understood by the individual and the family. Health care providers may know
diabetes better, but we can never know the child better. We must think of the
family as the primary caregivers, and the health care providers as consultants.
Families, then, need to be active participants in their child’s care,
and they must be willing to learn what they need to know to do this. Education
of patients and families is one of the most critical components of diabetes
treatment, the link that makes family management possible. It is the
responsibility of health care providers to help families understand their role
in management and to furnish information and supporting materials that will tell
them what they need to know, both the basics and the nuances.
Clinicians working with children with diabetes and their families must
have comprehensive knowledge and the ability to teach. They must enjoy
explaining things and be willing to go over them again and again. There must be
mutual trust between the family and the clinician, and it is the role of the
clinician to foster this trust, to assure the family that we are working with
them to achieve common goals.
It is also important to understand that knowledge does not equal
behavior. In addition to learning the skills to perform the necessary technical
tasks and the cognitive ability to make management decisions, many families need
to learn to improve the behaviors that are important to successful diabetes
management.
Records are the best tools for learning and can be reviewed at family
meetings and meetings with the health care provider. Without written records,
your problem-solving ability is limited. When things are not going well, you
want more information, more complete record keeping. This will allow for early
action at the beginning of a problem, to help prevent the situation from getting
out of control. The better the control, the more normal the life of the child
and family with diabetes can be.
Parents, siblings, and the child or teen with diabetes must learn how to
make management decisions within certain limits that are established in
collaboration with the clinician. They must understand that diabetes is a
24-hour-a-day, 7-day-a-week condition. They need to learn how to recognize early
signs and symptoms of trouble and know when to call for consultation. Only the
family can make minute-to-minute, hour-to-hour interventions, observing when
something is beginning to get out of control, and taking quick corrective
action. As problems occur, families and health care providers must solve
problems together and learn from the problems and solutions.
Over time, as the family becomes increasingly confident and competent,
the role of the health care provider diminishes. The goal is to have the child
and family in charge, not the diabetes. The alternative is to let diabetes
overshadow all facets of their lives, with the result that the child is not
healthy enough to live a normal life and moves from one crisis to another with a
less than hopeful long-term prognosis.
Diabetes is forever, an inescapable fact that can be very discouraging to
some people. Much of what health care providers can do, especially for families
just beginning to deal with the diabetes diagnosis, is to keep hope alive. The
best service we can provide is to help families cope and to help them stay
interested in self-management. Nearly all children and teenagers with diabetes,
as well as their families, have the desire and the ability to learn how to
manage their disease. Health care providers--specialists, nurses, primary care
physicians, dietitians, and social workers--may sometimes underestimate this
desire and ability.
There are a number of institutions and resources that can help with these
tasks. We recommend that families join the American Diabetes Association and the
Juvenile Diabetes Foundation, and that younger children consider attending
diabetes camps. Almost every state has such a camp, and financial assistance is
often available for needy families. Older children can consider working as
counselors at diabetes camps.
Much of the discussion in the following pages will examine problems
encountered by patients and their families. You will meet children and teenagers
with diabetes and see how they manage their disease with varying degrees of
success. A sketch of Amy M., a girl whom we began treating when she was 6 years
old, will help to set an encouraging and optimistic tone. Amy has taught us all
some lessons about how to cope with this demanding disease. She is one of many
children who manage diabetes intelligently and competently in a way that allows
them to lead full lives with minimal restrictions.
Case
study.__Amy M. was diagnosed when she was 6 years old. She had polyuria and
polydypsia of 2 weeks’ duration, but no other symptoms and no weight loss. Her
height was 115.1 centimeters (45.3 in.), in the 50th percentile for her age; her
weight was 21.0 kilograms (46.2 lb), in the 75th percentile. Her urine was
positive for glucose and ketones, and her blood glucose was 263 milligrams per
deciliter (mg/dL). Her pediatrician diagnosed Type 1 diabetes.
Amy is an only child; her father is a teacher, and her mother is a nurse
who works part-time. Amy’s initial insulin doses were 4 units of NPH and 3 of
Regular in the morning and 3 units of NPH and 1 of Regular at dinner. (See
chapter 6 for a description of insulin types.) From the start, she demonstrated
excellent blood glucose control. Her insulin dosage was gradually adjusted to
maintain optimal control and correlate with her growth. Her linear growth was
normal, with her height remaining between the 50th and 75th percentile and her
weight in the 75th percentile.
Three years after diagnosis, Amy’s glycohemoglobin counts remained in
the target range most of the time, reflecting consistent control. She was
supervised regularly by her parents, and they are very effective problem-solvers
together.
When she was 101Ú2, Amy started on an insulin pump, at her own and her
family’s request. She wanted the pump in order to ensure good control. Amy’s
meal plan is set so that she consumes about 70 grams of carbohydrate at each
meal and 40 grams at each snack, and she determines her insulin doses on the
basis of carbohydrate consumption (1 unit for every 10 to 15 g of
carbohydrates), with a sliding scale based on her body weight (then 35 kg) that
goes up or down a half unit for every 25 mg/dL of blood glucose outside her
target range. She uses two basal rates, one from 10 a.m. to 3 a.m., and a
slightly higher one from 3 a.m. to 10 a.m.
Amy enjoyed both the freedom and the enhanced control that the pump
provided, but she initially had a problem inserting the pump catheter, which
must be changed a few times a week. She found the procedure very painful but
began using a topical anesthetic, which she applied about an hour before
inserting the catheter. Once the problem of pain was solved, Amy did very well
on the pump.
Amy is now 14, 163 centimeters (64 in.) tall and weighing 59 kilograms
(130 lb); her height and weight are both in the 75th percentile for her age. She
has adult sexual maturation. Her glycemic control is very good, although there
are intervals when it is less than ideal. She monitors her blood glucose three
to five times a day, so that she can make insulin dose adjustments when
necessary. Her glycohemoglobin readings are consistently in target range, and
her glycohemoglobin was 6.0 percent (of total hemoglobin) at her last visit
(normal: 4.5 to 6.1%). Her blood glucose is generally in the normal range,
between 70 and 120 mg/dL, and there are no signs of any complications.
While these facts and figures of diabetes are a routine part of her
everyday life, Amy’s life goes much beyond diabetes. She gets A’s and B’s
in school, plays on the girls’ basketball team, loves rock music, and--like
many girls her age--records her thoughts and feelings in a diary.
As
has been emphasized throughout this book, many of the medical and dietary issues
of diabetes are closely intertwined with psychological issues. There are many
fears and concerns that children and teenagers and their families have in
relation to diabetes. Chief among them are the following:
They are concerned that the diagnosis of diabetes requires significant
lifestyle changes and commitments, particularly with regard to organization,
planning, and food issues.
Diabetes has both acute and chronic complications that many people fear.
This includes the daily risk of hypoglycemia, as well as anxieties and dread
about long-term complications. Parents are very concerned about these issues,
although children themselves often exhibit the typical childhood sense of
invulnerability.
Parents and children fear that the treatment for diabetes--injections and
monitoring--hurts.
The child or adolescent perceives himself as having a defect that will
make him unattractive to friends or less desirable for dating or marriage.
Diabetes is relentless, and you can never take a real vacation from it.
Many times each day, the child and family must deal with decisions that affect
diabetes management and therefore the child’s health and, ultimately, life.
People often act as if blood glucose monitoring results and
glycohemoglobin counts are report card grades and they are being judged on the
basis of these readings. Who is doing the judging--their parents? the children
and teens themselves? health care providers? Often it is the patients
themselves.
Young children may think that they have been bad and that diabetes is
their punishment. This belief can be very pervasive and deeply felt and is often
not fully recognized.
Despite the family’s best efforts, the risk of complications is still
uncertain.
Having a chronic disease exacerbates all the child-caring tasks that have
to be dealt with as any child grows up, and it complicates the task of becoming
independent.
The above list includes concerns that are specific to diabetes.
Psychological considerations revolving around more general health care issues
are also intertwined with diabetes management. Health-related behaviors,
knowledge, and skills are impacted by individual and family functioning. A broad
range of psychosocial issues will end up influencing diabetes management and
adherence to treatment requirements. These include expectations and attitudes
about health care; past experiences with illnesses and health care personnel;
goals for treatment, which can range from specific to general and which change
with time; moods; personality traits (e.g., extroversion or introversion); and
sources of significant stress in the family, such as death, divorce, other
illnesses, or financial concerns. Don’t underestimate financial problems. Job
loss, job security, debt, and health insurance are extremely important in many
families and can end up having a significant impact on diabetes management.
Diabetes is a family disease, and the family must work together with the
health care team to solve problems. Families, including siblings, need to
develop plans to share diabetes-related tasks. Good communication and
cooperation are essential. All family members should be able to discuss their
feelings about diabetes in an open and nonjudgmental way.
Since psychological issues are so intertwined with all the other aspects
of diabetes management, the primary care clinician needs an understanding of
these issues within every patient’s family. An early gauge of psychological
adjustment will be the way in which the child and family accept the diagnosis of
diabetes, and their willingness to learn about diabetes, take all of the
necessary knowledge steps (of which there are many), and begin changing
behaviors.
Changing
Behaviors
The clinician can assess whether the family is willing to make the
necessary behavioral changes for effective diabetes management by considering a
number of questions. How are they reacting emotionally to some of the issues
important in diabetes management, such as fears about injections, fears about
hypoglycemia, and fears about long-term complications? Who are the key support
people in the patient’s life? Is there any psychiatric illness in the family?
What are the body weight goals for the patient? How do the patient and/or family
see diabetes affecting body weight and attractiveness? Eating disorders and
depression have been shown to impact negatively on glycemic control.
The way in which the patient and family interact with the various health
care providers--either the primary care clinician or the specialist and various
members of the team--is also important. Patients and their families must feel
free to ask questions; the clinician must take the time to explain what he or
she is doing, and why. The clinician must be constantly vigilant, not to
criticize but to question and be available for problem solving.
The medical setting should provide a sense of support and security even
in the darkest hours. Providing psychologically oriented health care--care that
enables patients to have trust in the provider’s availability and willingness
to be there even when they are despairing, feeling frustration, and
overwhelmingly burdened by this disease--is an important part of diabetes
treatment. Patients need this safe place that the clinician can give them,
especially since no one can tell them, “If you do A, B, and C, your disease
will be cured,” or even assure them that “if you do A, B, and C, you will be
free of complications.”
Cultural factors may influence the way in which a family perceives the
meaning of illness and its treatment. Some people see illness as a punishment.
They may think that God is punishing them and that they must have done something
bad to deserve this disease. Some stricter religious beliefs may foster this
perspective. Another attitude that may be culturally related is a fatalistic
approach, a sense that there is nothing that can be done to change the outcome
of this disease. Of course, as has been emphasized in every section of this
book, such an attitude toward the management of diabetes could not be further
from the truth.
In treating patients with diabetes, many clinicians will encounter people
with poor learning skills and ability. It may be years before they can master
the tasks of diabetes; they may never fully master them. We recall one case of a
single mother of five children who could not read or do any math. In a situation
such as this, it is necessary to simplify the regimen as much as possible. For
example, the patient’s mother could be instructed to use pre-mixed NPH and
Regular insulin, the clinician can put a piece of tape on the syringe at the
dose level insulin should be drawn to, and identify morning doses with a picture
of the sun and evening doses with a picture of the stars. And the clinician
should be aware that this child’s diabetes will never be under as tight
control as that of someone on a multiple-shot regimen who is able to make the
many decisions that are required every day to maintain such a regimen.
It is important to be aware of all these issues for every child and
teenager who has diabetes. It becomes particularly important when people are not
meeting all their goals in treatment, and when you get a sense from patients and
families that the disease is overwhelming them.
Clinicians should not be reluctant to refer patients and families for
mental health services if the family perceives that psychosocial or behavioral
issues are interfering with the achievement of desired goals. We always
recommend psychological counseling for patients who can’t meet the medical
goals of treatment or who seem to have personality or psychological barriers to
successful management.
Our suggestion is not always heeded. For instance, in the case of a child
who can’t get over the blow of having a chronic disease, we will strongly
recommend therapy, but if he is not motivated to seek psychological help, he
can’t be forced to do so. There are some patients you may not be able to help,
but you should never give up. You never know when a circumstance will occur
which will push someone into making a change. We recall a teenage patient who
had turned a deaf ear to our advice about the association of tight glycemic
control and prevention of complications. But she was somehow struck by a public
service announcement she had heard on television about how diabetes causes
blindness. She had heard this dozens of times from her parents and health care
team, but when it came from a different source, it triggered a new awareness.
She recognized herself, saw her ability to have some control over her condition,
and began to take the appropriate steps.
A collaborative relationship is necessary among clinicians and patients
and their families. As has been repeatedly emphasized, this is a disease of
home- and self-management, and all must be full partners. Patients and families
need to participate actively in setting treatment goals and agendas. Much of the
work that clinicians do concerns diabetes knowledge, diabetes skills, and health
behaviors, because this directly affects glycemic control, and glycemic control--along
with other risk factors (e.g., smoking)--affects long-term complications.
However, it is clear that one also needs to think about how to contribute to
diabetes knowledge, skills, and health behaviors at a deeper level by
influencing family and individual functioning. Underlying factors such as
depression and eating disorders should be pursued and treated. Maintaining and
improving the therapeutic alliance between the family and the health care
provider should be a continuing effort.
An internally set goal is usually much more achievable than one that is
externally imposed. Clinicians should be realistic about the choice of goals. We
can say to a child, “We want you to monitor your blood glucose five times a
day and write your numbers down and fax them to this office once a week.” But
if this interferes with the child’s own goals, and he wants to monitor only
twice a day, he will seldom do what we ask. However, the clinician should convey
to him that he must also be realistic in setting his goals. Monitoring twice a
day might be acceptable, but monitoring twice a week certainly would not be.
Ask children and teenagers about hidden concerns. Be specific. Ask them
what they are worried about. You’ll hear responses such as these:
“I’m worried that I’m going to have a hypoglycemic reaction while
I’m driving, so I’ll eat candy before I get into the car, and then I worry
about that.”
“I’m worried about my new boyfriend seeing me take a shot, so I
won’t carry insulin or glucagon or syringes with me. I won’t even tell him
about glucagon, and I make sure my blood glucose is running in the 200s or
higher when I go out with him.”
“I worry about getting stuck somewhere without any insulin or any food.
Like getting separated from my mother at the mall.”
“I don’t want the kids in my class to know I have diabetes, because
they’d tease me and wouldn’t pick me for their sports team. If they know I
have diabetes, I’ll be the last kid picked.”
The hurt from these rejections, and perceived rejections, can stay with a
child for many years. Even if it’s not important to play the game, it is still
important to be accepted, to be picked for the team. The feelings engendered by
these situations, and their relation (or perceived relation) to diabetes, will
become intertwined with a child’s feelings about her disease and its impact on
her life.
Anger,
Guilt, and Hope
It is not always easy for children and teenagers to honestly communicate
their feelings. It is often easier for younger children, particularly when they
are given a little bit of encouragement and a sympathetic ear. “I’ll bet
you’re really angry at having diabetes,” we will say to them, or “What’s
the hardest thing about this for you?” Sometimes it will help a child just to
yell, “I hate diabetes!” and this should be allowed and encouraged. Or
suggest a pillow or punching bag labeled “diabetes,” which a child can pound
when he is angry.
Sometimes, some of these negative feelings and worries will manifest
themselves in the form of anger at the clinician. The health care provider has a
different perspective from the family. We see these children all the time, we
usually know what we should do for them, their problems are everyday occurrences
for us, and we will go home at the end of the day. But they may think that their
lives are falling down around them and will never be normal again.
The child’s (or parent’s) anger should be addressed in an empathic
way. Acknowledge it, acknowledge that it is real and reasonable, and don’t try
to minimize it. Talk about what the underlying fears and worries are. Listen
carefully. Health care providers often think that they are in the role of
providing the answers. In fact, this is what clinicians have been trained to do.
But this may sometimes lead to trying to solve problems that are out of our
purview, rather than helping an individual figure out how to solve his own
problem. It might seem easier to propose a solution, but first ask the patient
or parent: How do you think this problem can be resolved? What are your ideas?
If he can think of no potential solutions, then propose a number of solutions to
choose from. This is an important form of empowerment.
One subtle indication of anger at the clinician is a common response one
might get when asking for input from patients--the remark, “Well, you’re the
doctor.” This abdication of responsibility, turning the burden of the disease
over to the doctor, can be an expression of resentment and underlying hostility
directed at the health care professional, who, after all, sometimes might seem
like the bad guy to a confused and unhappy child or a frightened and overwhelmed
parent. We have some families who believe that because they come for treatment
at a major medical center, we should be able to cure their child’s diabetes.
Anger at the disease may be expressed in seemingly trivial ways. Parents
get angry if they have to wait to see the clinician, if they can’t find a
parking place, if the person drawing blood has to stick the child more than
once. This is anger at the disease which is redirected toward the clinician. You
have to recognize this, be tolerant of it, allow the negative feelings, and
allow the anger to be expressed. It is very important for the clinician to
respond in a compassionate way. Try not to take negative feelings personally.
Most negative feelings are about the disease and life with the disease, not
about you. Most are surmountable.
Guilt is also a common feeling, especially among parents and older
children. Parents--particularly parents who also have diabetes or have a family
history of diabetes, and thus have a sense that the genetic predisposition came
from them--may think that the fact that their child has the disease is their
fault. Guilt can be powerful. “I did something wrong when I was pregnant,” a
mother will think. Or “I fed my child the wrong foods or allowed her to eat
something she shouldn’t have.” When the parents are well educated, an
empathic clinician can usually dispel these feelings with accurate information,
but sometimes misconceptions linger. In families with lower educational levels,
dispelling the guilt can be very difficult. Cultural background may also
influence this.
Parents and health care providers should have similar goals in
approaching children with diabetes. Their role is to keep hope alive (a phrase
that is borrowed from the title of a book about psychotherapy)--for patients,
for families, and perhaps for ourselves--and to facilitate a normal life. If the
only goal in a child’s life is keeping her blood glucose in good control, then
she doesn’t have much of a life. Managing chronic disease gets very tedious--and
for no one more so than the patient. There are various ways to keep hope alive,
and sometimes just small acts or activities such as the following can change a
child’s focus and renew hope:
Set aside 1 day a week when the parent gives injections and takes care of
monitoring.
Come up with creative suggestions for food treats--for example, pretzels,
Goldfish and other kinds of crackers, animal crackers, and vegetables and fruits
cut into unusual shapes.
Award points for successfully fulfilling the tasks of diabetes care and
reward accumulations of points with “prizes”--family activities such as a
camping trip, a movie, a dinner at a favorite restaurant, or a trip to the
arcade. A teen might want to use points for items of clothing. (Note that points
are awarded for carrying out tasks, not for the results of monitoring.)
Case
study.__Jennifer M. is 8 years old and comes to our clinic from a town about 150
miles away. She is a very good-natured and motivated child, with highly
motivated parents, and they all work very hard for diabetes control.
Jennifer’s glycemic control is mostly in the target range, and she has
excellent glycohemoglobin levels. Her mother told us that during their visits
with the pediatrician, he looks at the blood glucose charts and points out every
high. Jennifer and her mother leave these visits feeling defeated, as though
they can’t do anything right.
We try to counter this approach. It is important for clinicians to have a
positive, not negative, point of view. We believe strongly that people need to
leave office visits with the strength to overcome obstacles. This doesn’t mean
that problems should be ignored. Rather, it is the function of the clinician to
point out problems in a positive and constructive manner, without blame, and to
suggest how the problems might be overcome.
One role of the clinician is to help children and their parents deal with
their feelings. Allow them to feel angry, for example. But then try to shift the
perspective. Help them to focus on their successes. It is necessary to point out
the negatives when you think they are dangerous or risky, especially when you
sense underlying risk-taking behavior. But it is just as important to notice and
point out successes. Ask empathic, supportive questions such as “What’s the
hardest thing for you about living with diabetes, and how can we help you deal
with that problem? What problems or behaviors do you want to work on now? What
do you want me to work on with you? What would you like your goals to be?”
Comments such as “You’re eating that?” are not helpful.
Humor can be a tremendous help to lighten the load when things are
getting too serious or discouraging. The psychologist on our team, who has
written of his experiences with his son, Blake, who has diabetes, tells of
Blake’s struggle to add a second daily shot to his regimen. He and Blake got
into a discussion of why a second shot was necessary, and the ramifications of
fewer and fewer shots. Why not one shot a day? why not one a week? why not one a
year? they asked, perhaps deteriorating into silliness. But after Blake and his
dad laughed about how big a needle he would need for one shot a year, Blake had
no problem with two shots a day.
Shifting
Responsibility
Diabetes is a family disease, and it affects the most basic components of
family functioning--family routines, eating habits, planning, vacations,
emergencies. The family must work together as a team for diabetes management.
They soon learn that it isn’t easy. Even in the DCCT intensively controlled
group, only 5 percent of patients could maintain consistently normal
glycohemoglobin levels throughout the duration of the study.
With the hormonal shifts and growth spurts and emotional issues of
puberty, diabetes management can become even more difficult for teenagers. If
teens and their parents are pushed to achieve glycemic control that is beyond
their reach, this can lead to a sense of hopelessness. “I can’t ever do
anything right,” the child will think, and this will lead to decreased
motivation and contribute to even worse glycemic control. Medical goals must be
realistic and fit the child’s age and the family’s abilities, but they
cannot be set too low, because that would result in chronic hyperglycemia and
long-term complications. It is necessary to set a middle ground--and to realize
that this middle ground shifts throughout childhood, and particularly during
puberty.
Gradually, the responsibility for diabetes care will shift to the child,
but parental supervision should be part of the process every step of the way.
Responsibility should not be shifted on the basis of age alone. Cognitive
ability varies widely in children. If responsibility is transferred too soon,
diabetes control is likely to worsen. When dealing with children in their teens,
clinicians and parents must recognize that no one but the teen can control his
blood glucose levels. It is not possible to force teenagers to do what they’re
not willing to do. Parents and clinicians can help, and they can and should work
with the teen to support the goal that he has chosen.
Shifting responsibility can be very difficult for parents and health care
providers alike, as Susan’s case illustrates.
Case
study.__Susan R. is a 10 year old who has had diabetes for 4 years. She has been
accepting of her disease, and her glycemic control is generally very
satisfactory, with glycohemoglobin levels of 7.2 to 7.9 percent (normal: 4.5 to
6.1%). When she turned 10, she and her parents felt that she was ready to take
over full responsibility for giving her own insulin injections. Before that, she
had been doing blood glucose monitoring successfully by herself and had mastered
injection technique. She had been giving herself the injections for almost a
year, after her parents drew up the insulin and as they watched. Now, she and
her parents felt that she was ready to take over the responsibility for both
drawing up and injecting. For 2 months, Mr. and Mrs. R. carefully observed Susan
drawing up and injecting, and there were no apparent problems. They felt
confident enough to stop watching.
For several weeks, Susan’s blood glucose level remained steady, but
then it began to climb. Her parents noted high morning blood glucose and
occasional morning ketones. They suggested that Susan increase her evening dose
of NPH to try to correct the problem, but there was no improvement. When they
questioned Susan in a gentle, supportive way about what might be occurring, she
said, “I’m in too much of a rush at dinner to take my shot, and then I
forget.” Susan was not giving herself her evening injection on a regular
basis. When her parents resumed close supervision, her blood glucose levels came
back under control.
Problem
Solving
Diabetes management presents challenge after challenge to the
problem-solving skills of clinicians, parents, and patients alike. It is
important to include children in the problem-solving process as soon as they
have sufficient cognitive skills to become involved.
The very specific problems of diabetes management must be attacked in
steps, and all but the youngest children need to be aware of how one step leads
to the next. Every principle can be illustrated with the very specific details
of the child’s diabetes management. During a clinic visit, it is helpful to
start by identifying one area of living with diabetes which the child or teen
wants to change. Ask the question, “What do you think you need to do to manage
this problem?” This helps to crystallize the problem and paves the way for
potential solutions. Emphasize that there is probably not one single answer for
each question. Suppose that a child is eating a very large snack (about 800
calories) when she comes home from school, and her before-dinner blood glucose
is soaring to 450 mg/dL. The possible solutions include eating a bigger lunch,
so that her after-school hunger is not so great; eating a smaller snack; and
covering the large snack with an extra dose of Regular or lispro insulin. The
clinician can figure out the specific first step that seems most likely to
address the problem. Signed contracts or written summaries of a clinic visit can
often be helpful in reinforcing patients’ and families’ awareness of the
problem-solving steps that need to be taken.
It might seem that covering every meal and snack with insulin is a
solution to nearly all food-related problems and would allow the child to eat
whatever and whenever she wants, but that is an oversimplification. First of
all, this solution might lead to weight gain. Also, some children will complain
that they don’t want to have another shot, that they don’t want to always
carry their injection supplies with them, that they don’t want to always have
to calculate doses, and that they don’t want to do the extra work involved
with this level of management.
As the child or teen with diabetes grows up with all the medical and
psychosocial strains added and aggravated by this disease, it is important for
parents and clinicians to support the child’s emotional strengths with trust,
caring, and optimism. They must take care that diabetes management does not
overcome the satisfaction of daily life or prevent families from enjoying and
loving each other. This is sometimes easier said than done, and it requires
awareness and work. Even the stresses of life without diabetes can sometimes be
overwhelming for both children and adults. It requires that parents and children
spend time together, talk openly, communicate honestly, and share their concerns
and problems with each other and with the health care provider. And it requires
seeking out psychological help when problems seem too difficult to handle alone,
as the case of Cameron illustrates.
Case
study.__Cameron H. was diagnosed with diabetes at 11 years of age, the first
person with diabetes in his family. His father is a university professor and his
mother is an accomplished artist. He has one older sister, and both of the
children do very well in private schools. Cameron and his family learned the
fundamentals of diabetes management and the skills of balancing a complicated
regimen very quickly.
During the next 3 years, Cameron did very well. He told us that diabetes
management (a three-shot-per-day regimen) was “easy” and that he didn’t
let it consume his life. Then, at age 14, entering adolescence, he became
depressed, with flat affect and lack of enjoyment of life. He has a family
history of clinical depression. Suddenly, Cameron began having a great deal of
difficulty managing his regimen; his blood glucose levels were often out of the
target range, and he had an elevated glycohemoglobin of 10.4 percent.
We referred Cameron for treatment for depression. At the same time, we
simplified his regimen to two fixed shots a day and the same amount of food at
the same times every day. Cameron’s parents became more involved in his
diabetes management. With his daily decision-making no longer so burdensome, and
with psychotherapy and antidepressant medication, Cameron’s diabetes
management improved and his depression lessened.
The right attitude is important and can help. Diabetes control should be
an integral part of the life of the child or teen with diabetes--but it can’t
take up his whole life. It needs to be an accepted element of daily life: it is
something a child must do for himself; there is simply no choice about it. But
it must be done in the context of a whole life. If a child is terrified of
getting a long-term complication and devotes his whole life to preventing it,
his life is restricted, just as it would be restricted if he were afraid of
driving on the highway because of the fear of an accident and thus never drove
on the highway. We can’t ignore the fact that there are real risks for the
person with diabetes, but a balance must be struck. Balance is the key.
Patient
Burnout
It is not surprising that children and teenagers with diabetes will
sometimes feel overwhelmed by the tasks of managing their disease. They may
think that diabetes is taking over their life, that they are alone, and that no
one else understands what they are experiencing. During these periods, many
children will feel ambivalent about improved self-management--on the one hand,
it may seem that this requires too much of a struggle for their efforts to be
worthwhile; at the same time, however, they may feel guilty and fearful about
the results of their poor self-control. This feeling of hopelessness, the sense
that there is no solution, no way to alleviate what seems to be an unbearable
situation, invariably leads to even less success in management.
It is during these times when patients are feeling despair that they have
the greatest need for care and close attention from their health care providers.
The clinician can heed the child’s emotional needs and help her negotiate
goals. This may be a critical time in the therapeutic alliance, and the provider
should be aware of this. Sometimes the simple act of breaking down the tasks of
diabetes control into small pieces and working with one piece at a time makes
the oppressive duties seem more manageable to the patient. For example, for the
child who is disorganized and hurried in the mornings and thinks that she just
doesn’t have time to take care of her injection, it can be helpful if a parent
organizes all of her supplies in a little box, so that the entire burden is not
on the child.
Most adolescents with diabetes go through a period of feeling that they
can’t cope. They think that their burden is too heavy, they let things drop,
they stop being careful, and they stop monitoring. It is important that the
clinician approach this with a supportive, not condemning, attitude. The
clinician may be tempted to say something like, “Who do you think you’re
hurting? Not me, not your parents. You’re hurting yourself.” But such a
strategy is likely to be counterproductive. Instead, the clinician could say,
“You’ve really had a tough time these past 2 months. What are your feelings
about this? What can we do to help?”
Don’t underestimate the value of showing support. Sometimes we say to
patients, especially small ones, “You really need a hug,” and sometimes a
hug can make a tremendous difference when people are going through difficult
times. A good, empathic clinician will have a sense of when a hug is
appropriate. It is best not to hug a child when a parent is not present.
Sometimes a parent may need a hug, too, or a verbal equivalent of one.
Clinician
Fatigue
Clinician fatigue or burnout results from a number of factors, all of
which, unfortunately, are likely to increase in the current health care
environment. Chief among these is high work-related stress, the feeling of being
overworked and underappreciated. All too many clinicians today are experiencing
a decrease in their satisfaction with their workload and sometimes with their
interpersonal relationships.
Providing care to patients with major chronic diseases has its own set of
frustrations and sense of futility for the clinician. This is often compounded
by unrealistic goals and expectations on the part of patient and clinician, as
well as the tendency of some health care providers to assume too much
responsibility for problem solving.
If clinician fatigue contributes to less than optimal patient care, this deprives patients of their most significant ally. It disrupts the therapeutic alliance for the patient. The clinician needs to overcome these difficulties using all the resources at his or her disposal. The patient’s family is the primary resource to help with treatment plans and goals. More personally, as a clinician you must strive for balance in your personal life. You can’t take all the clinical burdens on yourself. Recognize that you don’t succeed with everyone. Take a break. Talk to colleagues, family, and friends. Working with a team or with other providers can be helpful in preventing or detecting burnout. Working closely with a colleague can help you, and you can help each other.
In summary, many aspects of life with diabetes can be burdensome for
patients, their families, and clinicians. Conversely, though, there are
strengths that can result from living with this disease and all the daily
management tasks that are required. For instance, we see in some patients a
healthy lifestyle with an increased awareness of the importance of physical
activity and nutrition. Parents may feel that successfully dealing with all the
day-to-day issues of diabetes care puts other aspects of life in a better
perspective. Finally, children and teens with diabetes, and their families, may
develop a deep sense of satisfaction and competence from their ability to live
successfully with this disease.
©
1998 The
Johns Hopkins University Press
All rights reserved. Published 1998
More information or to purchase this book go to The Johns Hopkins University Press .
For more information on the Diabetes page see:
Diabetes in Children
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