Teens with Diabetes. Michael A. Harris

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      Adjustment to Diagnosis During Adolescence

      Being diagnosed with diabetes during adolescence can be a very difficult challenge at an already stressful time of development. Children diagnosed with diabetes at a young age often do not remember a life without diabetes once they reach adolescence. The years of a familiar diabetes care routine can be a protective factor for many teens. However, when a young person has lived 13 or more years without diabetes and then is told he or she has diabetes, the adjustment can be quite difficult. The diagnosis brings with it significant lifestyle changes.

      Although teens are better prepared cognitively than children to manage diabetes, given their stronger abstract reasoning and higher cognitive-processing abilities, the shift away from tight parental supervision and monitoring leaves them vulnerable to poor diabetes self-care. Compared to children, teens are more in control of what they eat and what they are doing when away from their homes, and they have established some pretty strong patterns around health behaviors such as exercise and diet. Teens live much less structured lives compared to their younger counterparts. During adolescence, sleep patterns are known to shift dramatically, eating patterns often change markedly, and reliance on parents rapidly decreases. Unfortunately, it is well established that living a more structured life makes diabetes management easier, given that many of the diabetes management tasks happen around regular meals and during the waking hours of the day. If a teen is used to eating whenever he or she wants and goes to sleep late at night and wakes up in the afternoon on weekends, diabetes care becomes more of a challenge.

      Because teens have more sophisticated cognitive-processing skills than children, they can more readily establish a causal relationship between their health behaviors and health outcomes. While still in the hospital at diagnosis, teens begin to establish a strong connection between the food they eat, the insulin they take, and their blood glucose levels. Within hours of a teen’s first reading, he or she will begin to pair diabetes-specific tasks with achieving a blood glucose number in the target range. This is an adaptive behavior that gives teens control over a situation in which they feel completely out of control. Making a direct connection between engaging in self-care tasks and keeping blood glucose levels in the target zone simplifies what is being asked of adolescents. “If I check my blood glucose levels and calculate my carbs and insulin, then I will be fine,” they think. Unfortunately, diabetes care is not that simple, and there is not a one-to-one relationship between metabolic control and health behaviors. Then teens begin to view diabetes management as a game that, if played correctly, they can win. However, as soon as a teen has a blood glucose level out of the target range, he or she thinks of that as a loss in the diabetes game or a “bad” thing. Likewise, when the teen has a blood glucose level in the target range, he or she thinks of that as a win or a “good” thing. When blood glucose levels are viewed as good and bad, teens begin to view themselves as doing well or badly at managing diabetes, and then quickly make the jump to “I am good or I am bad based on what my blood glucose level is.” Unfortunately, given the nature of diabetes, teens have more blood glucose levels out of target than in target…a lot of bad and not much good. Teens may not let their disproportionate number of “bad” blood glucose readings prevent them from taking care of their diabetes; they may instead solve the problem by not checking their blood glucose levels, to avoid being reminded of all the bad. So although they may get their insulin, these teens are making guesses about amounts of insulin that are based on guesses about blood glucose levels. This is clearly not a way to successfully manage one’s diabetes.

      Although this maladaptive thinking pattern about good/bad blood glucose numbers is something we see clinically on a daily basis, it can be prevented by health care professionals. We recommend that health care professionals discuss the reality of blood glucose variability with adolescent patients and their parents. The fact that variables we cannot measure (e.g., pubertal hormones, stress) impact blood glucose outcomes needs to be discussed. Moreover, we recommend focusing on adolescents’ self-care behaviors (e.g., checking blood glucose levels, counting carbohydrates, bolusing before meals) more than on the blood glucose outcomes. When adolescents focus on engaging in self-care behaviors and also focus on fixing out-of-range numbers instead of feeling worried, guilty, or demoralized about out-of-range numbers, their metabolic and psychosocial outcomes improve.

      Another challenge that teens newly diagnosed with diabetes have is the bigger-picture question: “What does this mean for me and the rest of my life?” A younger child diagnosed with diabetes is quick to view his or her diabetes as a temporary thing, and so to some degree that type of thinking is adaptive in getting the child to “temporarily” make all the changes necessary to accommodate diabetes care. However, teens newly diagnosed with diabetes have the ability to understand that their diabetes is not a temporary condition and that they will likely have to take care of their diabetes for the rest of their lives. This realization can quickly overwhelm a teen at diagnosis and make it difficult to see a life with diabetes that is “normal” and in which he or she can experience success (e.g., college, career, marriage).

      Finally, we see parents of teens newly diagnosed with diabetes struggling to know how best to parent, either around the diabetes management or around typical parent-teen issues. Parents typically do one of two things when their teenager is diagnosed with diabetes. Some parents view diabetes as a sickness and begin to back off on typical expectations they may have had of their child. These parents are quick to allow their children to skip school when not feeling well, to drop out of normal activities (e.g., sports, clubs) for fear of low blood glucose, and to avoid spending time away from home (e.g., sleeping over with friends, going to the beach). Other parents view the challenge of diabetes management as a cognitive and behavioral exercise that teens are capable of doing independently. These parents are quick to assume that once properly educated, their teen can and should take care of his or her diabetes without any assistance. These parents forget that a newly diagnosed teen faces enormous psychological, social, and emotional challenges that can have an impact on the success of diabetes self-management.

      Case Example

      Abby is a previously healthy 14-year-old female who was diagnosed with diabetes during a hospitalization after 2 weeks of frequent urination, increased thirst, increased appetite, and frequent fatigue, and weight loss of about 15 lb over the past month. Abby currently lives with her mother and 17-year-old brother. She visits with her father weekly. Abby just began high school and is an active person. She participates in softball, basketball, and volleyball. Abby is an excellent student and has many friends. With all of her activities, Abby has a very unstructured life. Sometimes she is home from school at 4:00 p.m., while other times she is not home until 8:00 p.m. or 9:00 p.m. because of a late game or practice. Abby is frequently up late doing homework, and on school nights does not get to bed until 11:00 p.m. or midnight. Weekends are equally inconsistent. Some weekends Abby sleeps in until noon and other weekends she is up earlier for practices or games. At diagnosis, Abby appeared largely unaffected by the challenges of managing her diabetes, and her mother also never appeared worried about Abby’s ability to successfully manage her diabetes. Abby was viewed by the medical team as a model patient and mature beyond her years. At times during diabetes education, Abby appeared to be competing with her mother over diabetes knowledge and the “right” thing to say when asked about carbohydrate counting, insulin adjustment, and blood glucose checking.

      Assessment and Intervention

      An initial assessment of Abby might lead one to think that she is well on her way to successfully adjusting to and managing her diabetes. However, several things stand out as possible problems that might cause Abby to struggle with her diabetes after she is discharged from the hospital. The primary issue that might trip up Abby is also an asset in other situations; that is, being so bright and excelling academically. Understanding what one needs to do is not enough for successful management of diabetes. In Abby’s case, this conundrum is compounded by the fact that her mother sees her as competent and capable without considering the other critical psychological, social, and emotional factors that go into successful diabetes management. Without some intervention, Abby and her mother would be headed home with the presumption that Abby can take care of her diabetes independently.