Abstract

Objective: Youth with type 1 diabetes mellitus face long-term risks of health complications of the disease. Little is known about patients' and parents' knowledge, acquisition of information, and family communication regarding these complications. This paper reports qualitative analyses of parental focus group discussions of this topic.

Research Design and Methods: Forty-seven participants (30 mothers, 14 fathers, 3 others) representing 33 children between the ages of 8 and 18 with type 1 diabetes participated in one of 13 focus groups. Open-ended questions focused on the type, amount, and way information about long-term complications was presented to parents by health care professionals at different time points. Questions also elicited details about parent-child communication and exposure to misconceptions about diabetes complications.

Results: Qualitative analysis of the transcribed focus groups revealed participants experienced significant anxiety about diabetes complications, with a shift from concern about daily management tasks to long-term complications over time. They desired a flexible, collaborative educational approach, especially regarding the timing and type of information, relative to the child's age and duration of diabetes. Many parents wanted more sensitive communication and emotional support from health care providers. Motivating children appeared to be a particular challenge; family burnout with diabetes over time was reported. Knowledge was gained in many ways, yet misinformation was uncommon.

Conclusions: Obtaining information about long-term complications is an important process that changes over the course of the disease and with the child's developmental level. More research is needed, especially regarding youth knowledge, learning, and beliefs about diabetes complications.