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. Another issue that might be easily overlooked is Abby’s competitive nature and her focus on getting it right. This could quickly lead to discouragement and frustration when Abby is doing everything right, but her blood glucose levels are not in the target range. What we often see with such young people is that they intensify their diabetes self-management efforts and then eventually burn out because those efforts are not sustainable alongside the busy schedule of a teen athlete. Finally, it is clear that Abby’s lifestyle will present challenges to successful diabetes management. Abby’s irregular sleep and eating schedules will make it difficult to establish patterns in managing her diabetes.
Treatment for Abby would involve a conversation with her and her mother about the need to work together in managing Abby’s diabetes. We tell families that no matter how smart, how experienced, or how old someone is, we don’t see anyone managing diabetes successfully alone. We talk with families about the goal being “interdependence” around diabetes management, not “independence”: “interdependence” being defined as the use of friends and family to help and support diabetes management. The goal is for Abby to be maximally independent in daily life and minimally burdened by diabetes. Treatment would also involve a discussion of the concept that blood glucose levels are neither good nor bad. Instead, all blood glucose levels should be viewed as good and as valuable bits of information to help guide Abby, her mother, and the medical team in good diabetes care. This strategy also allows for disentanglement of Abby’s blood glucose levels and her actual diabetes care behaviors. In other words, we would help Abby understand that because of other factors out of her control, she will likely have high and low blood glucose numbers despite optimal diabetes self-management.
3
Psycholinguistics is the psychology of language. The language that we use has a huge impact on our own behavior as well as the behavior of others. There is no better example of this than the self-fulfilling prophecy, where what we tell ourselves about a situation oftentimes becomes our destiny (Merton 1968). If you tell yourself that you will be unhappy with something, it is likely that you will, in fact, be unhappy. This is not to say that our thoughts and beliefs automatically become reality, but we tend to focus on and remember aspects of our experiences that confirm what we already believe and feel to be the case. We tend to dismiss or ignore evidence that contradicts those beliefs. Psychologists call this the confirmation bias (Nickerson 1998). We see this process set in motion very early on in the life of someone with diabetes. Those who learn to think about making the best of their diabetes and not to hate having diabetes are more likely to cope with the natural struggles of having this chronic health condition, while those who think their lives are ruined because of diabetes will find confirmatory evidence. Clearly, health care professionals working with teens with diabetes should be mindful of how they talk about diabetes.
In addition, the language that professionals use with patients has been linked to health outcomes (Street 2009). For example, a systematic review of studies examining the outcomes of communication interventions targeting physician–patient encounters found that, generally, communication interventions led to more productive physician–patient encounters and in many of the studies improved health outcomes (Griffin 2004).
Obviously, teens are very sensitive to the words that we use, and in many cases we use strong language with teens that does not truly reflect the reality of the situation. A simple example that many parents and professionals use is the statement: “You need to take more responsibility for your diabetes.” Cloaked in that statement is the belief that the teen is being irresponsible about his or her diabetes and/or doesn’t take it seriously enough. The ultimate misuse of language with teens with diabetes—or with anyone who has a chronic health condition—is to say they are noncompliant. To say that a patient is noncompliant is factually incorrect, as collectively we have never met any teen with diabetes who is noncompliant. His or her compliance may be less than stellar, but the teen is never totally noncompliant. This phrasing allows for only two options, compliant or noncompliant, perpetuating the myth that there is only one right way to manage this complicated and ever-changing disease. The research suggests that only about 7% of individuals with diabetes are fully compliant with their treatment regimen at any given time (i.e., doing every diabetes-related task expected of them at exactly the time it is expected to be done). The second way that the use of the word compliance is a problem is that noncompliance is a term that suggests children are purposefully ignoring the directives of a parent, perpetuating a paternalistic model of care. The fact that the word is pejorative only makes matters worse. Although the term noncompliance has been and still is used by well-meaning health care providers, it does not provide the information necessary for high-quality care that encourages shared decision making. With this judgmental frame of reference, where does one start in terms of providing medical care to a teen with diabetes?
The Society of Pediatric Psychology chose not to use the term noncompliance in any of its publications because of its pejorative connotation. More recently, many health care providers have switched over from describing patients as noncompliant to describing them as nonadherent. Although the use of the term nonadherence is less condescending, it still limits communication about the patient’s health behaviors in that it frames behavior around complex tasks as dichotomous: patients are either adherent or nonadherent. The use of both nonadherence and noncompliance significantly limits effective communication with patients about their health behaviors. Given that most medical care is based on patient self-report, the full picture is not realized when using the terms compliance or adherence with patients, especially teen patients. Instead of using these words, facilitate effective communication with patients by asking them how they are doing managing their diabetes. This allows for questions about times and conditions when they are able to do what is being asked of them, as well as when they struggle with their
