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.

Figure 1

Parent-reported responsibility endorsement of type 1 diabetes self-care domains by age-group.