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 treatment regimen.
Example: Paternalistic Language
Physician: Have you been compliant with your diabetes regimen?
Teen: Yes.
Physician: So you’re getting all your insulin and testing your blood glucose five times per day as I asked you to do?
Teen: Yes.
Example: Collaborative Language
Physician: So, my guess is, like most people with diabetes, you are pretty good at some parts of your diabetes management, while other things are harder to do or to remember to do. Tell me, what is going well with your diabetes self-management?
Teen: I always remember to take my Lantus and I’m good about counting carbs.
Physician: Excellent. How are you able to remember to take your Lantus all the time?
Teen: It’s actually pretty easy because I take my Lantus in the evening and since I am getting ready for bed it has just become a routine.
Physician: What is harder for you to do?
Teen: Well, I don’t always remember to take my Humalog at lunch because I don’t want to go to the office when everyone else is eating.
Two more words that imply purposeful, mean-spirited behavioral choices are sneaking and cheating. Parents frequently report that their teen is sneaking food or cheating on a meal plan or eating the “wrong foods.” What we ask parents in these situations is, “Since when does eating food become sneaking or cheating? When did eating food become a clandestine activity?” In addition, using these terms with teens turns the eating of food into a cat-and-mouse game between parents and their teens. The more that a teen feels he or she is doing something wrong, the better he or she gets at hiding it. Knowing what someone is eating is critical for proper diabetes care so that proper adjustments can be made in insulin. Therefore, it is vital to set the stage for open communication and problem solving about eating choices, instead of creating an environment where the goal is avoiding conversations with parents.
Many years ago, before the advent of short-acting insulin such as Novalog or Humalog, the