Mothers' experiences parenting the young child with type 1 diabetes

This descriptive triangulated study was designed to describe mothers' day-to-day experiences in raising young children diagnosed with type 1 diabetes. Twenty-eight mothers were interviewed, observed, and administered a battery of questionnaires that dealt with diabetes-related concerns, general parental stress, day-to-day management time issues, and resources used to care for young children with type 1 diabetes. Twenty-five mothers of young children without diabetes were also administered questionnaires for comparison. To provide maximum contrast in the interview analysis, mothers of children with diabetes were grouped by concern and resource scores. The quantitative findings included: mothers' main concerns included hypoglycemia and diabetes control, and time demands; injection concern decreased over time; for some, the overall stress increased the longer the child had diabetes; mothers were excellent interactors with their children as evidenced by their NCATS scores; they reported limited access to appropriate child care and babysitting resources. The comparison data revealed mothers of children with diabetes had less access to appropriate child care resources and babysitting supports when compared to mothers of children without a chronic illness. The qualitative findings supported most of the quantitative data and suggested that ongoing responsibility of care, managing hypoglycemia and hyperglycemia, lack of babysitting support and dealing with daycare issues were concerns for all the mothers. The mothers learned the care over time, becoming proficient and feeling confident within 6 months to one year after diagnosis. Their confidence was frequently shaken after episodes of severe hypoglycemia. Most parents relied on inner strength and a healthy attitude in dealing with their child's needs, with only a few appearing angry and bitter about the situation. The results of this study suggest that health care providers need to be more sensitive to the learning process and recognize that parents need time to build their confidence. An initial and ongoing assessment of available supports, access to respite, babysitting and daycare resources is critical to their day-to-day management. Suggestions for future research and health policy issues are presented.