Acquisition of Self-Care Responsibility in Youth With Type 1 Diabetes: Opportunities for Improving Tailored Diabetes Education and Support Programs

Abstract

Background There is gradual acquisition of type 1 diabetes self-care responsibility across childhood as youth mature and gain more independence from their family. Understanding the timing of diabetes self-care by youth can guide the tailoring of diabetes education and support programs. Objective To investigate parent-perceived responsibility for diabetes self-care tasks across childhood. Methods Parents/guardians of youth (ages 5–18 years) with type 1 diabetes reported parent involvement in diabetes management using the Diabetes Family Responsibility Questionnaire. Survey items were divided items into five domains: nutrition, monitoring, insulin dosing, communication, and health surveillance. Age-groups for analyses were 5–10 years (elementary school), 11–14 years (early adolescence), and 15–18 years (late adolescence). Demographic, diabetes management, and A1C data were collected at the time of survey completion. Results Youth (n = 148, 50% male) were a mean age of 12.9 ± 3.3 years, with a mean type 1 diabetes duration of 6.2 ± 3.6 years; 66% used insulin pump therapy, and the mean A1C was 8.4 ± 1.3%. Of the parents (84% mothers, 91% White), 83% were married, and 52% were college educated. Per parent report, less parental involvement was associated with older youth age (P <0.001). Across all age-groups, more overall parental involvement was related to lower A1C (P = 0.02). Youth self-care in the nutrition domain began in elementary school, whereas self-care in monitoring and insulin dosing began in early adolescence, and self-care with regard to communication started in late adolescence. Responsibility for health surveillance remained mainly under parent care throughout childhood and adolescence. Conclusion Providing education and support for youth during their acquisition of self-care tasks, especially those relating to nutrition, monitoring, and insulin dosing, may help to prevent glycemic deterioration later in childhood and adolescence.