Abstract

OBJECTIVE—Youth with type 1 diabetes 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—A total of 47 participants (30 mothers, 14 fathers, and 3 others) representing 33 children between the ages of 8 and 18 years with type 1 diabetes participated in 1 of 13 focus groups. Open-ended questions focused on the type and amount of information about long-term complications presented to parents by health care professionals at different time points, as well as the way that information was presented. Questions also elicited details about parent-child communication and exposure to misconceptions about diabetes complications.

RESULTS—Qualitative analysis of the transcribed focus groups revealed that participants experienced significant anxiety about diabetes complications, with a shift from concern about daily management tasks to concern about long-term complications over time. Participants 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 regard to diabetes care 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.