Teens with Diabetes. Michael A. Harris

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.

Introduction

      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

      1

      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 young adults and coined the term emerging adult, which will be discussed later in the context of transition. In contrast to Hall’s idea of an across-the-board tumultuous time specific to adolescence, Arnett found that rates of psychopathology were relatively consistent from childhood into adolescence and that most youth were not experiencing significant psychological distress. Further, there was no major shift in risk taking during adolescence; however, the consequences of the risks taken by adolescents were much greater than the risks taken by children. Finally, Arnett concurred with Hall in confirming an increase in parent-child conflict as children mature into adolescents.

      Arnett’s debunking of Hall’s assertion that adolescence is universally a time of storm and stress, paired with the evidence of unique challenges across biologic, physiologic, and cognitive developments for adolescents, leads to the following assumptions:

      • Most adolescent patients do not experience profound psychological distress, but instead experience the normal demands of navigating this developmental period.

      • Most adolescent patients do not intend to be “difficult.”

      • You should approach each encounter with an adolescent patient with a fresh perspective, because development will trigger almost daily changes in attitudes, perceptions, and mood.

      Further, to be fully prepared to help the adolescent patient in front of you, consider the areas discussed below.

      Defiance of Convention

      When working with adolescents, most professionals struggle with the normal developmental demand