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Addressing noncompliance with children from dysfunctional families
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Medical providers often view a child’s noncompliance with diabetes self-management as deliberate resistance or lack of motivation, depending on the age of the child. The question medical providers should ask themselves when faced with a noncompliant child is: “Am I looking at the patient or the identified patient?”
It’s worth noting that for adolescents, boundary testing is normal and may contribute to poor management, along with peer pressure. For many school-aged children, the need to be accepted by their peers can be more important than self-care, checking blood sugars and giving insulin. Not all noncompliance with diabetes self-management in children is due to being an identified patient.
The identified patient
An identified patient/child is the child in a dysfunctional family who has been labeled the problem or sick child, due to an unconscious defense mechanism referred to as externalization. The patient’s family members, to avoid emotional, relational or behavioral problems of their own, ascribe them to their child.
The inherent problem when working with the “problem child” or “sick child” is that there is a tendency for family members to view these kids as responsible for their inability to manage their diabetes. Although not all children fall into this category, those who do, fall between the cracks and begin to believe they are at fault. They become the label their parents assigned to them.
Many times, the child is managing diabetes alone with little support, along with the stress and distractions of unhealthy family dynamics. Once they start believing the family-ascribed role, their behavior changes to match the label assigned to them: the bad child, the irresponsible child, the lazy child, the worthless child, the sick child, among others. The acting out may be related to the need to assimilate into the constructs created by the child’s parents. The behavior of acting out can also be an unconscious attempt to draw attention to the child’s dysfunctional family dynamic in the hope of getting help.
The identified patient doesn’t always take on the role given to him or her. The child may not be acting out, but the parents attribute incorrect meanings to their child’s behavior, misinterpreting innocent actions as deliberate. The families of these kids will go to great lengths to keep the child in the ascribed role. This behavior happens because it distracts from the real problems within the family dynamics.
Clinical example
One identified patient I worked with was diagnosed at age 10 years. Upon entering diabetes-focused psychotherapy, he was a malnourished 14-year-old with attention-deficit/hyperactivity disorder (ADHD). The parents stated that their child was manipulative and irresponsible and no longer obeyed them. They blamed him for not following their direction to check his blood glucose level before and after meals and give insulin each time he ate. They stated that his diabetes had started taking too much of their time, and they expected him to be more active in his own management.
His endocrinologist informed me that he was noncompliant with his diabetes self-management, but he had attributed it to normal boundary testing that comes with adolescence. After several meetings with the patient, his parents and other family members, it became evident that he was an identified patient.
His parents wouldn’t allow him to take medication for his ADHD because they believed it would cause him to lose his appetite and lose weight, a common concern for someone starting a stimulant. However, the cause of his malnutrition was due to the extremely low-carbohydrate meal plans his parents created. Without a proper meal plan and medication for ADHD, he will continue to fail in high school and be unable to manage his diabetes properly, and weight gain will be next to impossible.
Although the parents believed that they wanted to help their sick child, they wanted to avoid problems in their marriage even more. Alcohol dependency, anger issues and avoidance behavior by one parent came to the surface. By focusing on the child, the parents avoided looking at their marriage. The household was chaotic with little support or safety. After a closer review, the parents were manipulative, irresponsible and unconsciously keeping the teenager sick to avoid the problems in their relationship.
Resolving noncompliance
Addressing proper diabetes self-management in identified patients is difficult, due to a family system that needs the patient to stay in the sick role. The lack of support these children have in managing their diabetes may cause them to believe that they may be unable to manage their disease properly. Poor self-esteem from years of emotional abuse from parents and other members of the family contribute to the belief that they can’t manage their diabetes.
A team approach to these cases is necessary; everyone in your patient’s team must be in the loop. All of the health professionals your patient sees to manage their diabetes and any other physical and emotional needs must understand the identified child’s situation. The team must be aware that the family may be interfering with the child’s management or undermining it.
The team approach helps clarify the reasons the identified patient is struggling with his or her management while preventing splitting on the part of the parents. Families will attempt to prevent family dynamics from changing, so move slowly with your patient’s family or they may withdraw from treatment.
Regardless of the type or degree of family dysfunction, your patient will need help to deal with his or her issues that interfere with diabetes self-management. Avoid recommending family therapy; getting the identified patient into individual psychotherapy is a good start. If possible, the therapist will recommend family work after your patient’s family dynamics are known. Most likely the parents will gladly make sure he or she gets therapy to deal with the externalizations they assigned to their child. It validates the parents’ denial and supports the belief that their child is the problem, not them.
To help these patients we need to help their families deal with their dysfunction in a healthy way, and to do that, it takes a team. The more you know about the problems your patients face every day, the better equipped you will be to help them find their solutions.
- References:
- Bowen M. Family Therapy in Clinical Practice. New York: Aronson; 1978.
- Bowen M. Theory in the practice of psychotherapy. In: P. J. Guerin, ed. Family Therapy. New York: Gardner; 1976.
- Broderick P, Weston C. Psychiatry. 2009;6:32-37.
- For more information:
- Eliot LeBow, LCSW, CDE, is a diabetes-focused psychotherapist, presenter, author and founder of DiabeticTalks and Diabetes-Focused Psychotherapy. His private practice is in New York City and is also available via Skype. LeBow, who has been living with type 1 diabetes since 1977, treats the many diverse cognitive, behavioral and emotional needs of people living with diabetes. He can be reached at eliot.lebow@gmail.com. He reports no relevant financial disclosures.