Self-care and caregiver contribution to self-care in adolescents with type 1 diabetes mellitus: a pilot cross-sectional study

Background: Type 1 diabetes mellitus requires complex skills of self-care that, during adolescence, need to be adapted to continuous major changes. Therefore, adolescents could struggle in performing adequate self-care, with consequences on glycaemic control. Caregivers’ contribution to self-care could be useful for reaching health outcomes. Existing studies lacked a theoretical framework, and tools administered for measuring adolescents’ self-care and caregivers’ contribution to self-care were not theory grounded. Aim: To describe adolescents’ self-care and caregiver contribution to self-care within the theoretical framework of the middle-range theory of self-care of chronic illness. Methods: A cross-sectional observational study was conducted enrolling 153 adolescent-caregiver dyads. The Self-Care of Diabetes Inventory (SCODI), including self-care maintenance, monitoring and management, was administered to adolescents. The Caregiver Contribution to Self-Care of Diabetes Inventory (CC-SCODI), including caregiver contribution to self-care maintenance, monitoring and management, was administered to caregivers. We analysed the differences in caregiver contribution according to adolescents’ self-care level and the differences in caregiver characteristics according to their contribution to self-care level. Results: Adolescents mostly obtained adequate scores for self-care maintenance (74%), monitoring (52%) and management (58%). Caregivers mostly obtained adequate scores for contribution to self-care maintenance (72%) and monitoring (52%), and almost adequate scores for contribution to self-care management (41%). Scores were consistent within the dyads for self-care monitoring and management: high caregiver contribution when adequate adolescent self-care and vice-versa (P < 0.001). Higher caregiver self-efficacy in contributing to patient self-care was associated with higher caregiver contribution to self-care maintenance (P = 0.022), monitoring (P < 0.001) and management (P < 0.001). Conclusion: Caregivers can contribute significantly to the self-care of adolescents with type 1 diabetes. Health professionals could implement interventions aimed at improving caregivers’ contribution through enhancing caregiver self-efficacy in contributing to patient self-care. Researchers could deepen the understanding of the relationship between adolescent self-care and caregiver contribution to self-care, as well as the determinants of caregiver contribution to self-care, and its effects on health outcomes.