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
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Developmental Demands of Adolescence
If you work with teenagers or they live in your home, you are well aware of their many great qualities. Teenagers are eager to grow up and have new experiences, and have a sense of invincibility mixed with some innocence and naïveté. Your experience with teenagers has also led you to understand their rapidly fluctuating emotions, brazen attitudes, and, at times, difficulty appreciating the importance of taking care of themselves. This chapter will provide a context for why teenagers behave the way they do and how different approaches may be necessary when interacting with teenagers. This chapter will help you when that next adolescent patient shows up in your clinic and displays a defiance of convention, a preference for social priorities over personal priorities, and a sense of invulnerability and invincibility. We also discuss how these adolescent qualities affect diabetes management.
Developmental Context
More than 100 years ago, the child development pioneer G. Stanley Hall described adolescence as a time of “storm and stress.” According to Hall (1904), adolescence is marked by three major changes: emotional upheaval, increased risk taking, and extreme parent-child conflict. Hall believed that this period of development is biologically driven and largely universal, but especially problematic for adolescents in the U.S. Hall cited urbanization and individualism as additional causes of storm and stress in U.S. adolescents.
Since Hall’s initial description of adolescence, others have examined the concept of storm and stress empirically. An American psychologist, Jeffrey Arnett (1999), examined adolescents and
