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Getting it Together for High Risk Diabetic Teens

Posted By Harold Starkman, Tuesday, July 10, 2012

Ann, a 15-year-old with Type I diabetes of seven years duration, had multiple admissions to the hospital due to poorly controlled blood sugars. Her diabetes physician and nurse practitioner tried multiple interventions to help Ann and her parents improve regimen adherence--including increasing clinic and phone follow-up and scheduling family diabetes re-education sessions--with limited success. Referral to the hospital social worker and a series of community psychotherapists resulted in a number of short courses of therapy characterized by missed visits and poor communication between the family, diabetes care team and therapist.

At age 18 years, Ann’s medical care was transitioned to an adult diabetes care provider. At her first visit to her new physician, she was told that whether she chose to adhere to her treatment plan and avoid diabetic complications was "totally up to her”. Ann was subsequently lost to medical follow-up until age 34 years when she presented to her local hospital’s emergency department with severe diabetic complications and a history of continued poor blood sugar control.
Harold Starkman
"Being well aware of the difficulty in engaging families in structured psychosocial intervention programs, we decided to take a new tack and ask our high-risk families to become our expert consultants."

  -Harold Starkman

The story above is not atypical for 10-20% of adolescents with diabetes. Often, pediatric diabetes providers feel that they are failing their patients. Their frustration can lead to blaming and shaming the teen and his/her parents. Continued poor blood sugar control frequently results in a mental health referral for individual therapy with the teen becoming the "designated patient” who has issues "dealing with diabetes”. An emphasis on providing first order change (i.e., improved blood sugars. fewer hospitalizations), often moves the therapeutic focus to the teen’s relationship with diabetes and away from relevant family and social issues. This limits therapeutic success and is ineffective in slowing a trajectory towards estrangement of the teen, family and care team and eventual loss to medical follow-up. These youths often re-connect with the medical system in their late 20’s to 30’s, presenting with diabetes complications.

In 2009, at the BD Center for Children & Adolescents of the Goryeb Children’s Hospital in Morristown, NJ, we established our Family Focused High Risk Diabetes Intervention Program to learn more about and provide services to our diabetic adolescents with poor blood sugar control. Being well aware of the difficulty in engaging families in structured psychosocial intervention programs, we decided to take a new tack and ask our high-risk families to become our expert consultants. Family members were invited to participate in a two-hour, videotaped, semi-structured interview, focusing on family strengths, day-to-day diabetes management, and interactions with their diabetes care team. After the initial interview, we offered participating families a short-term therapeutic intervention, at no cost, with the goal of lowering diabetes-related conflict by improving problem-solving and communication skills.

At the same time, we initiated a series of educational conferences focusing on family dynamics for our medical diabetes care team. These sessions included observation of a family therapist conducting a family interview, followed by team discussion. In addition, in order to learn more about the medical provider’s perspective, each team member was asked to participate in a semi-structured, videotaped interview. These interviews focused on the provider’s personal experience with chronic disease and beliefs related to the management of adolescents with sub-optimal blood sugar control.

To date, 20 high-risk families have participated in our program. We are in the process of analyzing our epidemiologic, interview and outcomes data and will be reporting on these in the near future. An invaluable benefit of our study design, however, was the opportunity to observe video interviews showing the dramatically differing perspectives of families, their medical and mental health providers. These differences often evolved into conflict, which in turn impeded collaboration, negatively impacting diabetes care. This effect was particularly notable at times of increased family stress when collaboration is most crucial.

The take-home message is clear: Although their perspectives, language and problem-solving approaches may differ, more effective collaboration between medical and mental health professionals and the families they care for is necessary for improved management of high-risk adolescents with diabetes.

 

Harold Starkman is Director of the BD Diabetes Center at the Goryeb Children’s Hospital in Morristown, New Jersey and Associate Professor of Clinical Pediatrics at the Mount Sinai School of Medicine. He graduated from the Albert Einstein College of Medicine and subsequently completed residency and fellowship training in pediatrics and pediatric endocrinology. More recently, he completed basic training in family dynamics at the Ackerman Institute for the Family.

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