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American Diabetes Association
1701 North Beauregard Street
Alexandria, Virginia 22311
DOI: 10.2337/9781580405317
Library of Congress Cataloging-in-Publication Data
Harris, Michael A. (Michael Avram), author.
Teens with diabetes : a clinician’s guide / Michael A. Harris, Korey K. Hood, Jill Weissberg-Benchell.
p. ; cm.
Includes bibliographical references and index.
ISBN 978-1-58040-531-7 (alk. paper)
I. Hood, Korey K., author. II. Weissberg-Benchell, Jill, author. III. American Diabetes Association, issuing body. IV. Title.
[DNLM: 1. Diabetes Mellitus--psychology. 2. Adolescent Development. 3. Adolescent. 4. Parent-Child Relations. 5. Self Care. WK 810]
RJ420.D5
616.4’6200835--dc23
2013042491
eISBN: 978-1-58040-577-5
Contents
1. Developmental Demands of Adolescence
2. Adjustment to Diagnosis During Adolescence
5. Parent-Teen Relationships and Diabetes
Diabetes is the second most prevalent chronic disease in childhood, occurring in about one of every 400–500 people below the age of 20 years in the United States. The prevalence of diabetes in this age-group is second only to that of asthma. Diabetes is a lifelong disease, and children with diabetes become adolescents with diabetes and then adults with diabetes. In adults, diabetes is a leading cause of new-onset blindness (due to diabetic retinopathy), renal failure (resulting in the need for dialysis or renal transplantation), nontraumatic amputations, and macrovascular disease (contributing to cerebrovascular [stroke] or coronary artery [heart attack] disease). According to the Centers for Disease Control and Prevention, in 2012, diabetes was the seventh leading cause of death in the U.S. and was a major contributor to the first (heart disease), fourth (cerebrovascular disease), and eighth (renal disease) leading causes. Therefore, overall, diabetes is a devastating disorder.
Metabolic control of diabetes (mostly, but not exclusively, glycemic/glucose control) is clearly associated with the long-term outcomes of diabetes. Better glycemic control, as determined by hemoglobin A1C, when started relatively early in the course of diabetes (even during adolescence), reduces the subsequent risks of retinopathy, nephropathy, neuropathy, and macrovascular disease. Although this fact has been clearly demonstrated for type 1 diabetes by the Diabetes Control and Complications Trial (DCCT)/Epidemiology of Diabetes Interventions and Complications (EDIC) Study and for type 2 diabetes by the U.K. Diabetes Prospective Study (UKPDS), morbidity and mortality associated with long-term diabetes complications still occur at an unacceptable rate.
Despite advancing knowledge over recent decades, the physiology of glucose metabolism and the pathophysiology of diabetes are not completely understood. Even after more than 90 years since the discovery and initial use of insulin to treat diabetes by Banting and Best, normalization of metabolic control remains an elusive goal for most people with type 1 and many with type 2 diabetes. For type 1 diabetes, which most commonly starts during childhood and depends on insulin replacement as the mainstay of treatment, the development of improved insulins and insulin analogs, self-monitoring of blood glucose (SMBG), and continuous glucose monitoring (CGM) and insulin pumps (continuous subcutaneous insulin infusion [CSII]) has significantly improved long-term outcomes and quality of life. However, normalization of metabolic control is still not a reality for most.
Managing diabetes requires attention to detail to a complex and changing medical regimen, usually multiple times a day. Diabetes management affects and is affected by every aspect of daily life. There is no vacation from the procedures related to diabetes management. Perhaps more than any other chronic disease of childhood, with the possible exception of asthma, diabetes requires continuous attention by the individual and his or her family and caregivers. The complex nature and imperfection of insulin replacement and the diabetes management regimen place substantial burdens on patients and their families. This burden is present at all ages and stages of life with different implications at each stage. However, these burdens are most challenging during adolescence. The nature of adolescence and the struggles prominent during this stage of psychosocial development conflict with the demands and continual immersion required to optimize metabolic control of diabetes. And even when implemented diligently, the results may be less than anticipated. Clearly, there is more to optimal diabetes management than providing the right amount of insulin at the correct times relative to nutrient intake and exercise. Optimal management requires an understanding and appreciation of the stresses and burdens of diabetes superimposed on the underlying social and family structure and characteristics.
In this book, Drs. Michael Harris, Korey Hood, and Jill Weissberg-Benchell, three child psychologists with considerable personal, clinical, and academic experience with children and teenagers with diabetes, use their collective experience to provide a developmental and psychosocial context for optimizing diabetes management in teens. Further, they highlight real-world examples of the conflicts and challenges that exist in adolescents with diabetes and their families and give practical approaches to facilitate resolution. Each chapter tackles a different aspect of adolescent–parent and adolescent–health care provider interactions and uses examples of approaches to deal with the given situation. Health care providers caring for adolescents with type 1 diabetes need to apply these examples and approaches when approaching teenagers with type 1 diabetes and their families.
The first chapter addresses the developmental demands of adolescence and the developmental constructs of why teenagers behave as they do. In the second chapter, the authors address adjustment to the diagnosis of a chronic disease such as diabetes and how diabetes affects the lifestyle of the adolescent. These lifestyle changes are considerable, and it is important that parents and health care providers understand this to maintain a supportive and ongoing relationship.
Chapter 3 addresses the language of diabetes and how what is said and how words are used conveys a message that can be either supportive or obstructive to the interaction and the relationship. Chapter 4 discusses diabetes self-management and the importance of focusing on self-care behaviors and realistic, achievable goals instead of only on unachievable metabolic outcomes. In this context, it is important to note that even with good self-management behaviors, outcomes may not be optimal. Chapter 5 concentrates on the parent-teen relationship and its impact on diabetes. This chapter’s primary focus is to highlight the importance of problem-solving strategies and the appropriate distribution of support and responsibility.
The remaining chapters address specific topics that are critical to understanding when working with teens with diabetes. Chapter 6 addresses mood and the risk of distress and depression in teenagers with diabetes. The prevalence of depression is high, and unfavorable consequences on outcomes are frequent. Professional psychological intervention is often necessary. Chapter 7 concentrates on the potential use of new and emerging technologies to benefit teens with diabetes. While the impact of these technologies on the health behaviors of adolescents are not fully known yet, they serve as a promising avenue for optimizing outcomes. Chapters 8 and 9 address important concerns related to repeat diabetic ketoacidosis episodes and high-risk behaviors, respectively. The issues discussed in these chapters include disordered eating and insulin omission, alcohol and other substance abuse, sexual activity, and driving.
Finally, Chapter 10 focuses on the important issue of transition from pediatric to adult health care and Chapter 11 focuses on advocacy—two themes that mark the conclusion of the adolescent period and evolution toward adulthood. These are issues that can fall down on the priority list, since many issues need to be addressed with adolescents; however, they absolutely need to be addressed to set the stage for successful navigation of the adult diabetes world.
Overall, this book provides, through examples based on the experiences of three knowledgeable and very capable clinical psychologists, an evidence-based practical approach to understanding the turmoil inherent in the triad of adolescent, parents, and health care providers. Understanding the developmental state of adolescents and addressing psychosocial, psychoeducational, and family issues that result are critical to providing the best medical care for teens with diabetes and their families. Our success (or failure) as health care providers for youth with diabetes will best be judged by the future success of our patients in their diabetes management and health care as they make the transition to adulthood. In this book, Drs. Harris, Hood, and Weissberg-Benchell lay a framework for these efforts.
Neil H. White, MD, CDE
Professor of Pediatrics
Washington University School of Medicine
St. Louis, Missouri
Collectively, we have worked with some of the best diabetes teams across the country, headed up by some of the best endocrinologists. Our work has been heavily influenced by these teams and their physician leaders, including the diabetes teams at St. Louis Children’s Hospital in St. Louis, Missouri (Neil H. White, MD, and the late Julio Santiago, MD), Children’s National Medical Center in Washington, D.C. (Allen Glasgow, MD, and Fran Cogen, MD), Joslin Diabetes Center in Boston, Massachusetts (Lori Laffel, MD, MPH), Cincinnati Children’s Hospital Medical Center in Cincinnati, Ohio (Lawrence Dolan, MD), Lurie Children’s Hospital in Chicago, Illinois (Donald Zimmerman, MD), the Harold Schnitzer Diabetes Health Center in Portland, Oregon (Andrew Ahmann, MD, and Bruce Boston, MD), and the Madison Clinic for Pediatric Diabetes in San Francisco, California (Saleh Adi, MD).
In addition, the success of our work has been made possible only through the support, guidance, and direction of the many expert clinicians and scientists in the field of diabetes, including Cindy L. Hanson, PhD, Tim Wysocki, PhD, Barbara J. Anderson, PhD, Richard R. Rubin, PhD, Mark Peyrot, PhD, David Marrero, PhD, Dennis Drotar, PhD, Pat Lustman, PhD, Alan Delamater, PhD, Marilyn Ritholz, PhD, and Suzanne Bennett Johnson, PhD, and the many members of BRIDGE (Behavioral Research in Diabetes Group Exchange).
During the writing of this book, a titan in the field, Dr. Richard R. Rubin, passed away. Dr. Rubin was considered one of the founding fathers of behavioral and psychosocial research in diabetes. He was a key player in many of the large multicenter studies examining better ways to treat diabetes, including the Diabetes Control and Complications Trial (DCCT), the Diabetes Prevention Program (DPP), and Diabetes Attitudes, Wishes, and Needs (DAWN), as well as many others. Along with Dr. Barbara J. Anderson, Dr. Rubin coauthored one of the first books for professionals addressing the psychosocial and behavioral challenges of diabetes care, Practical Psychology for Diabetes Clinicians (Anderson and Rubin 1996). Besides being an exemplary researcher and professional, Dr. Rubin was an incredibly grounded and compassionate individual. He was one of the nicest people we have had the pleasure of working with. When speaking about our successes in diabetes, we always think about the expression “standing on the shoulders of giants.” Dr. Rubin is and was one of those giants.
We would like to thank our life partners (Ally Burr-Harris, PhD, Neil Benchell, JD, and Diana Naranjo, PhD) for their support, patience, and encouragement throughout our careers. In addition, we would like to thank our own children (Jonah, Solomon, Raechel, Morgan, Maria, Emma, and Naomi) for the valuable lessons they have taught us as parents. They have brought us humility and helped us to “walk the walk,” adding to our ability to keep it real in our professional work with adolescents.
Finally, we would like to thank all the families of teens with diabetes whom we have worked with over the years. We are continually amazed at how they cope with the complexity of diabetes on top of the complexity of adolescence. Although all three of us have been trained in psychology, child development, and diabetes, most of what we have learned has come from our direct work with hundreds of teens with diabetes and their families. We are forever indebted to these remarkable young people and their equally remarkable families.
Teens with diabetes pose unique challenges for professionals working in diabetes care. Possible challenges range from the teen diagnosed with diabetes as a child who was previously a model patient and now struggles with his or her diabetes care, to a young person diagnosed with diabetes during adolescence who is struggling to integrate diabetes care into the “normal” life of a teen. We have found that many well-intending health care professionals fall back on the old strategy of “scared straight” as a means of trying to get teens to take better care of their diabetes. In essence, the scared straight approach involves lecturing teens about the likely long-term consequences of not taking care of their diabetes, including retinopathy, gangrene, and kidney failure. Yet we know that teens often are living in the now and are less worried about potential consequences down the road than adults.
The other common strategy we have observed many health care professionals using is to shift the focus to the parents and encourage them to take control of their teen’s diabetes care. Unfortunately, this approach, as most developmental psychologists know, is counter to the developmental demands of adolescence. To ask teens to accept parental control over domains they had previously controlled is akin to getting your driver’s license and then being told you cannot drive. This strategy is doomed to fail because most teens are seeking greater independence from their parents and are not receptive to handing control back to them. Any attempts by parents to take the control back are met with a high degree of resistance. A confluence of normal development, a complex medical condition, and frustrated professionals creates a perfect storm. The teens with diabetes and their families are unhappy, and the professionals working with teens with diabetes are frustrated. Ultimately, the aforementioned scenario results in poorer diabetes self-management and poorer metabolic control for teens with diabetes. Thus, we have written this book to address this very challenging population in hopes of improving care delivered to teens with diabetes and, in turn, improving the health behaviors and health status of teens with diabetes.
Collectively, our experiences with families of teens with diabetes have taught us valuable lessons. In this book, we provide professionals with a developmental framework for a better understanding of the normal developmental demands of adolescence and how those normal developmental demands may impact the management of diabetes during adolescence. Within this developmental framework, we also provide strategies for negotiating the many challenges of providing care to teens with diabetes. We identify common teenage issues (e.g., sexuality, smoking, drugs/alcohol, and depression) and discuss how they can be exacerbated by diabetes. Finally, we review subjects specific to teens with diabetes, such as insulin pumps, continuous glucose monitors, diabetes advocacy, and the transition from pediatric to adult diabetes care.
In each chapter we provide an overview of the interactions between development, diabetes, and family. We present case examples to further elucidate the issues, and then we provide suggestions for both assessment and intervention. This book is best used as a reference guide for professionals working with teens with diabetes and their families. Although some of the topics are unique to current approaches to diabetes management (e.g., technology and diabetes care), the bulk of the information provided is timeless and applicable to adolescents dealing with other complex medical conditions.
Michael A. Harris, PhD
Harold Schnitzer Diabetes Health Center
Oregon Health & Science University
Portland, Oregon
Korey K. Hood, PhD
Madison Clinic for Pediatric Diabetes
University of California, San Francisco
San Francisco, California
Jill Weissberg-Benchell, PhD, CDE
Lurie Children’s Hospital
Northwestern University
Chicago, Illinois
