Changing Patterns of Self-Management in Youth with Type I Diabetes

Self-management of type I diabetes is key to good physical and psychosocial outcomes of the disease, yet little is known about how youth and their parents share responsibility for illness management. This study describes the division of labor between youth and their parents, self-management conflict, and three patterns of self-management in youth across four developmental stages: preadolescence, early adolescence, mid-adolescence, and late adolescence. Twenty-two youth (8–19 years) with type I diabetes and one of their parents were interviewed using semistructured interviews. Data were analyzed using qualitative content analysis. Results indicated that parents of preadolescents (8–11 years) performed much of their children's diabetes care. Dyads reported some conflicts, particularly over food, amount of bolus, and blood glucose testing. The dyads demonstrated a self-management pattern that we identified as parent-dominant. Most early adolescents (11–15 years) performed much of their own daily care, but parents actively participated in their self-management and oversaw it. The majority of dyads reported conflict over food and blood glucose testing. Most early adolescents demonstrated a transitional self-management pattern whereby they managed their own daily care, with varying amounts of parental oversight. In mid-adolescence (15–17 years), youth managed nearly all of their diabetes care; however, some dyads reported that parental oversight of illness care was still considerable. Exercise was conflictual for the majority of these dyads. Over half of the youth and, by late adolescence (17–19 years), all youth demonstrated a pattern of adolescent-dominant self-management. In adolescent-dominant self-management, youth independently managed their diabetes. Half of the dyads reported that there were sometimes conflicts over food and blood glucose testing. Understanding the nature of sharing self-management responsibilities, the nature of conflict in carrying out such responsibilities, and the pattern of self-management may help nurses provide more targeted assistance to youth with diabetes and to their parents.