Mere mention of the words “teenager” and “diabetes” in the same sentence sends shudders down the spines of parents and health professionals alike.1 But the fact is that most families of teenagers with diabetes do a creditable job of managing it, and most teenagers will go on to lead full and satisfying adult lives despite the extra burdens it imposes.
What are the elements of parent-adolescent relationships that lead to these favorable outcomes? Why do some families seem to survive the teen years unscathed despite the challenges created by diabetes? What can health professionals do to help more families of teenagers achieve long-term success in living with diabetes? In this article, I will try to address some key features of family and health care environments that differentiate among those adolescents who succeed in life despite diabetes and those who do not. Some of the ideas I will express are opinions based on careful consideration of relevant research on adolescent development, particularly regarding the internalization of prosocial values, rather than on studies that have been done specifically with adolescents with diabetes.2
Warmth and Empathy
It hurts to watch someone you love make bad decisions that could lead to serious, but preventable, problems. As teens with diabetes grow up, parents must respond when their children make errors in judgment, behave impulsively or irresponsibly, or are dishonest about their diabetes self-management. These are all common, perhaps necessary, parts of the process of growing up with diabetes. Because diabetes responsibilities turn up in just about every aspect of daily life, the ways in which families and health professionals respond to these inevitable situations are probably important influences on adolescents’ psychological adjustment to the condition.
It is all too easy for adults to express caring and concern for their teenagers in ways that may be interpreted by the adolescents as overly anxious or negative, but not as caring. Certainly, adolescents tend to maintain a shorter-term perspective than do parents, who are more concerned about the long-term implications of ineffective self-care. Criticism, anger, disappointment, blaming, and other negative reactions from parents are understandable, but it is also understandable why these reactions could lead adolescents to conclude that diabetes itself is to blame. If this were your experience during your childhood, why would you, as an adult, share your diabetes burden with someone else only to face the risk of more rejection and humiliation?
Parents who respond to the foibles of their adolescents calmly and decisively and who do this while expressing warmth and caring rather than rejection and blaming fascinate me because these reactions do not come naturally to most people. Similarly, many parents are much more comfortable with attempting to influence their teenagers through coercive or punitive approaches than through praise, encouragement, and admiration. But the more a positive relationship can be achieved, the more likely it will be that teens will view their parents as sources of help, support, and guidance throughout adolescence and young adulthood.3
Either implicitly or explicitly, parents prioritize their goals in raising their children, and these values influence how families interact around diabetes. I often ask parents and teenagers to imagine how they would know if they had succeeded in managing diabetes when the teen is an adult. If their answers are framed entirely in terms of specific medical outcomes, I get concerned. On the other hand, if “diabetic control” is defined broadly as achieving important life goals that include but go beyond maintaining physical health, then I feel more optimistic for the adolescents. The key difference between these family responses is that the first has an implied goal of “living to control diabetes,” while the second is more focused on “controlling diabetes to live.” When the latter attitude is encouraged, teenagers grow up taking diabetes seriously enough, but not so seriously that they define their identities primarily in terms of diabetes.
Encouragement of Autonomy
A prevalent attitude among parents and health professionals is that teenagers must achieve independence in taking care of their diabetes. I would argue that complete autonomy in diabetes self-management is a myth, and it may not even be a goal that is worth pursuing. Pushing adolescents too hard toward autonomy in self-care may actually impede their internalization of positive health values. We know that teenagers who assume diabetes responsibilities too soon face increased risks of problems with treatment adherence, poor diabetic control, and preventable hospitalizations. We also know that effective social support is critical to successful treatment of many chronic illnesses in adults as well as adolescents. I believe that what parents and health professionals should emphasize much more strongly is teaching teens how to make the most effective use of social supports and how to share the load of diabetes management with those who care about them.4
A key ingredient to accomplishing this lies in the how and why of the transfer of diabetes responsibilities from parents to adolescents. Some parents who have been frustrated by their inability to help their teenagers accept more responsibility may withdraw entirely to wash their hands of accountability and guilt. Other parents may pull out because they are overwhelmed by other big problems. Handing over responsibility to teenagers for negative reasons such as these invites disaster because adolescents who are poorly prepared for assuming this role are doomed to make even more self-management mistakes and to eventually conclude that controlling diabetes is futile.
Parents who relinquish diabetes responsibilities to their adolescents more actively and for more positive reasons are likely to enjoy a smoother and more successful transition. Frequent and clear communication about who is responsible for which aspects of diabetes management is another important element of this process. Yielding responsibility to teenagers who have shown gradual improvement and refinement of diabetes self-management skills is much more likely to help these youngsters develop a sense of self-confidence and personal ownership of diabetes self-management.3
Another important dimension of the transfer of diabetes responsibilities from parents to teenagers is whether the process occurs in big chunks or in baby steps. Mastery of any complex skill occurs best when there is a gradual relaxation of external supports and when teaching moves from demonstration and modeling to verbal prompts and supervision and finally to withdrawal of external supports.5 Parents who actively supervise the diabetes management skills of their younger teens, who praise and encourage success and proficiency while offering gentle remedial instruction when needed, and who solve diabetes problems with, rather than for, their adolescents are more likely to find these transitions to be smooth.
Communication and Conflict Resolution
Many studies have shown that families who achieve and maintain good communication with their adolescents are more successful in diabetes management.6 Conversely, families in which there is substantial conflict are at higher risk for poor treatment adherence and unacceptable glycemic control. This suggests that an important goal for health professionals should be to help parents remain involved in their adolescents’ diabetes management in ways that are supportive and helpful and to decrease their involvement in ways that are critical, conflictual, overprotective, or demeaning.7
Effective teen-parent communication has several characteristics. It is frequent, open, direct, bi-directional, and respectful, and it leads to mutually acceptable solutions to recurring problems or disagreements. There is extensive evidence that parents and their teenagers can be taught to communicate more effectively and that both general and diabetes-related family conflict can be reduced.8,9 Effective communication training interventions typically include a combination of didactic instruction, modeling of appropriate communication skills, feedback on communication performance based on direct observation by a trained professional, self-monitoring of communication skills at home, and negotiated goal-setting for improvement in family communication.8 We have in progress a randomized, controlled trial to determine whether such an intervention can be targeted specifically to improve parent-adolescent relationships surrounding diabetes and whether this leads to improved treatment adherence and better diabetic control.
In this article, I have laid out four interrelated processes that affect physical and mental health outcomes of teens with diabetes. Positive outcomes are more likely for teens who grow up in family and health care environments that have the following characteristics.
Diabetes management is seen as a vehicle to accomplish broad life goals, rather than being defined more narrowly.
Loved ones’ concerns are expressed through warmth and empathy, and the adolescents become comfortable with relying on the support of others. There is more praise and admiration for self-care success and effort than there is criticism and punishment for self-care failures.
Diabetes responsibilities are transferred actively to the adolescents for the right reasons rather than as a result of parental burnout.
Parent-adolescent communication is frequent, mutually respectful, and constructive rather than conflictual and destructive.
Health care professionals have important roles to play in helping families cultivate environments with these characteristics. Health care professionals should routinely evaluate families along these dimensions before and after their children with diabetes enter adolescence. Families with significant problems on any of these dimensions should be referred for evaluation and possible treatment by a mental health professional who is familiar with diabetes.
The crucial role of the diabetes team’s clinical practices in affecting adolescent adjustment to diabetes cannot be overemphasized. The educational and clinical management of adolescents with diabetes should embody and emphasize these same values and principles so that these patients and their parents get a consistent message. With the support of family and medical environments that have the characteristics described in this article, adolescents can cope with diabetes in constructive ways that prepare them for long, satisfying lives.
Tim Wysocki, PhD, ABPP, is chief of the Division of Psychology and Psychiatry at Nemours Children’s Clinic in Jacksonville, Fla.