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.
journal_name
Diabetes Carejournal_title
Diabetes careauthors
Buckloh LM,Lochrie AS,Antal H,Milkes A,Canas JA,Hutchinson S,Wysocki Tdoi
10.2337/dc07-2349subject
Has Abstractpub_date
2008-08-01 00:00:00pages
1516-20issue
8eissn
0149-5992issn
1935-5548pii
dc07-2349journal_volume
31pub_type
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