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.

 

Leslie Plotnick, M.D.
Professor of Pediatrics
Division of Pediatric Endocrinology
Director, Pediatric Diabetes
The Johns Hopkins University School of Medicine
and Randi Henderson
Medical Writer
The Johns Hopkins University Press
Baltimore & London

CONTENTS

Preface

How to Use This Book

Acknowledgments

Chapter Eleven – Psychological Issues

Ordering information

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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Preface

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.

 

Acknowledgments

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.

 

Chapter Eleven – Psychological Issues

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 .