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Increased Family Involvement Helps Teens Manage Their Diabetes, Joslin Study Shows

BOSTON — July 7, 2003 — The teen years often are a special challenge for youngsters with type 1 diabetes. Rather than being attentive to what they eat and drink and routinely checking their blood sugar levels and making sure they get the proper amounts of insulin, many adolescents become careless about their diabetes care and prefer to join their peers without diabetes in eating and drinking whatever they want. The results can be out of control, skyrocketing blood sugar levels that — if maintained over a period of time — can lead to serious diabetes complications, like blindness, heart disease or kidney damage.

In a new study published by Joslin Diabetes Center researchers in The Journal of Pediatrics, Lori Laffel, M.D., M.P.H., and her colleagues found that families can be taught ways to support their child by being more involved in the youngster’s diabetes management and that the payoff is significant. “Maintaining successful family involvement appears key to optimizing glycemic control in youths with diabetes in order to preserve health and prevent future complications,” said Dr. Laffel. Dr. Laffel is Chief of Joslin’s Pediatrics and Adolescent Unit, an Investigator in the Genetics and Epidemiology Section, and Assistant Professor of Pediatrics at Harvard Medical School.

Tightly controlled blood sugar levels can significantly reduce the risk or delay the onset of diabetes-related complications, such as heart disease, stroke, kidney disease, blindness and nerve damage.

The Joslin research team studied 100 families from the Northeast who had children ages 8 to 17 years with type 1 diabetes for six years or less. Participants were randomized in either the family-focused teamwork intervention group or the standard multidisciplinary diabetes care control group and were followed for a year. All participants had brief quarterly parent-child interviews, completed questionnaires at the start and end of the study, and had equal numbers of clinic visits during the study year. The intervention group received encouragement to involve the whole family in relieving some of the burdens associated with the disease. This included modeling appropriate reactions to blood sugar levels, or avoiding the “blame and shame cycle,” and active family discussion around diabetes care to reinforce adherence to management tasks. The intervention also included emphasis on the importance of teamwork during adolescence, the use of a logbook as a problem-solving tool, and explanations of the meaning of hemoglobin A1c. Hemoglobin A1c is a blood test that indicates an individual’s blood sugar control over the last two to three months. Those in the control group did not receive the family teamwork intervention until after the study ended.

The results? The group provided with the experimental teamwork program was able to maintain their hemoglobin A1c level at 8.2% at the end of the study, whereas the control group increased their levels to an average of 8.7% after one year. The experimental group also was over two and a half times more likely to uphold or increase family involvement with diabetes-related tasks, such as insulin injections and blood sugar monitoring, compared to the control group. Although there was no difference between the groups on the number of times blood sugar levels were checked throughout the day, the researchers found that the more frequent an individual checked his or her blood sugar levels, the more likely they were maintain better diabetes control.

Results from an earlier study, the Diabetes Control and Complications Trial (DCCT), demonstrated that adolescents tend to have higher hemoglobin A1c levels than their adult counterparts. Parent and patient behaviors for optimal diabetes management also tends to decline within a year or two after diagnosis of diabetes. This suggests the need for alternative interventions in pediatric patients, such as this family teamwork approach. “The critical importance of family involvement in diabetes tasks has been reinforced with this research,” Dr. Laffel said.

Other Joslin researchers who participated in the study included Barbara J. Anderson, Ph.D., Ann Goebel-Fabbri, Ph.D, Deborah Butler, M.S.W., Laura Vangsness and Alexa Connell. The study was funded by the National Institute of Diabetes, Digestive and Kidney Diseases, The Charles H. Hood Foundation, and the Katherine Adler Astove Youth Education Fund at Joslin.

Page last updated: September 15, 2019