Assessment of psychosocial variables by parents of youth with type 1 diabetes mellitus

PURPOSE: To evaluate the impact of type 1 diabetes (T1D) on family functioning and child-rearing practices from parents’ point of view, to assess parents’ health-related quality of life and to explore the relations between psychosocial variables and diabetes care outcomes in youth with diabetes. METHODS: This research was part of the cross-sectional multicenter Brazilian Type 1 Diabetes Study, conducted between December 2008 and December 2010 in 28 public clinics of 20 cities across four Brazilian geographical regions. Psychosocial questions were addressed to 1,079 parents of patients with T1D through an interview (89.3% mothers, 52.5% Caucasians, 38.6 ± 7.6 years old). Overall, 72.5% of the families were from low or very low socioeconomic levels. Parents were also submitted to health-related quality of life instruments (EQ-5D+EQ-VAS). Clinical data from the last medical appointment were collected by a physician using standardized chart review forms. The demographic, educational and socioeconomic profiles were also obtained and HbA1c levels registered. RESULTS: Discomfort and anxiety/depression were the main complaints in EQ-5D, and were significantly more frequent in mothers (37.3% and 53.4%, respectively) than in fathers (25.7% and 32.7%, respectively). The mother was the only parent involved in diabetes care in 50.5% of the cases. The majority of parents (78.5%) mentioned changes in family functioning after the diagnosis, although they neither treated their diabetic children differently from the others (76.3%), nor set prohibitions (69.1%) due to diabetes. The majority was worried about diabetes complications (96.4%) and felt overwhelmed by diabetes care (62.8%). Parents report of overwhelming was significantly associated with anxiety/depression, as measured by the EQ-5D questionnaire. Less than half of the patients had already slept over, and the permission to do it increased as a function of children’s age. Nearly half of the parents (52%) admitted to experiencing difficulties in setting limits for their children/adolescents. HbA1c levels in patients from this group (9.7 ± 2.5%) were significantly higher than those of children/adolescents whose parents reported no difficulties towards limit-setting (8.8 ± 2.1%). Parents whose children/adolescents reported the occurrence of hypoglycemic episodes in the last month complained significantly more about anxiety/depression (55.1%) than parents from patients who did not report it (45.7%). Also a significantly greater proportion of parents whose children/adolescents had been hospitalized due to hyperglycemia reported anxiety /depression (58.7%) than those whose children/adolescents had not been hospitalized (49.8%). CONCLUSIONS: After the diagnosis of T1D, the lifestyle of all family members changes, what interferes with their quality of life. Mothers are still the primary caregivers for children/adolescents with diabetes. Difficulty to set limits for children/adolescents may be a risk for poor metabolic control. The study demonstrates the importance of family context in the adjustment of young patients to T1D. The specific needs of T1D patients and their impact on a family routine must be considered for future improvement on therapy elements and strategies.