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Advisory Board for Parents of Children with Type 1 Diabetes

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Advisory Board for Parents of Children with Type 1 Diabetes

Madison, Wisconsin - American Family Children's Hospital's Pediatric Diabetes Clinic is working with a research group in the University of Wisconsin's Department of Pediatrics to eliminate barriers to effective self-management of type 1 diabetes, and the group is asking parents of diabetic children to help by joining a newly-formed advisory board.

The advisory board will consist of 8- to 16-year-olds with type 1 diabetes and their parents or guardians, and is part of three-year research grant the Department of Pediatrics received to identify the reasons diabetes instruction and education does not always resonate with families with type 1 diabetic children.

Advisory board participants will work with clinicians, researchers and other families and children to discuss ideas about the best ways to overcome difficulties they are having in regulating blood sugar levels, and hopefully improve their quality-of-life.

"It is such an important thing for families to feel like they’re part of the process," said Gwen Costa Jacobsohn, the study's research coordinator. "Part of what makes this special is that it's being tailored to families, and also that we’re including families in the process from the beginning."

Advisory groups will meet three times a year. Participating parents and 8-16 year old patients will be paid for their participation. Parents who are interested in participating in the advisory group and contributing to this research project may contact Ms. Jacobsohn at (608) 263-3255 or

Research preceding the formation of the advisory groups determined that several barriers to self-management of type 1 diabetes exist, including:

  • Understanding care recommendations
  • The pain and hassle of adhering to a care plan
  • Denial of the disease and its consequences
  • Ineffective communication with the health care team
  • Discouraging interactions with peers

The advisory group members will talk with clinicians and other patients and families to determine successful ways to overcome these barriers and develop more effective care plans for young patients.

Date Published: 12/26/2013