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Table 1 The story of Elsa

From: Medical decision-making in children and adolescents: developmental and neuroscientific aspects

Elsa is a 16 year old adolescent who was diagnosed with diabetes type I at the age of 4.

The first years after the diagnosis, Elsa’s parents did all the diabetes care. They measured blood sugars, and adjusted insulin dose as required during meals, exercise etc. The insulin pump Elsa was wearing had a child safety lock to prevent accidental use by Elsa. Elsa was able to express how she felt about the disease but did not have any influence in the treatment. When Elsa became older, she was very eager to learn about her daily diabetes care. From the age of 7 she was taught how to measure her own blood sugar and what the result meant. From about the age of 8, she could instruct the pump to give the insulin dose needed during meals (as long as her parents had written down in her lunch box how many carbohydrates were in the lunch). At 10, Elsa showed profound insight in how to adjust her insulin pump settings when her blood glucose levels were not optimal. By then, she was so well informed and experienced that she was able to handle her diabetes with her parents only exerting global supervision.

When Elsa turned 12 and went to secondary school things changed. She started to exert less self-control. She did not measure glucose levels and did not inject insulin for meals at school. Her school friends were unaware of her diabetes because Elsa did not inform them. Elsa tried to deny her diabetes at school, and often even took off the insulin pump, for example during physical exercise at school.

When at the pediatrician’s office, Elsa was always friendly, showing remorse and promising improvement. At age 14 however, she had to be admitted to the Intensive Care Unit because of severe dysregulation of her diabetes and an acute life-threatening situation. At age 16, the same happened after drinking large amounts of alcohol