Knowledge of young people living with type 1 diabetes and their caregivers about its management

AIMS AND OBJECTIVE: We sought to investigate knowledge and skills of type 1 diabetes (T1D) management among young people living with the disease and their caregivers. Our aim is to provide baseline evidence to inform T1D self‐management education for young people living with the disease and their caregivers. BACKGROUND: Both local and international guidelines recommend ongoing T1D self‐management education for people living with the disease. This is because T1D often develops among young people who rarely have the competencies to adequately manage their condition. However, the extent to which young people living with T1D and their caregivers can self‐manage this chronic disease in a low‐resource country like Ghana is unknown. METHODS: Using a phenomenological study design, semi‐structured interviews were conducted with 28 young people living with type 1 diabetes, 12 caregivers and 6 healthcare providers in southern Ghana. Data were collected at homes, hospitals and support group centres of participants via face‐to‐face interviews, photovoice and video‐conferencing. The data were analysed thematically using QSR NVivo 11. RESULTS: The young people living with T1D and their caregivers demonstrated knowledge and skills in the self‐monitoring of blood glucose, and the treatment of hyperglycaemia. Areas of more marginal or lack of knowledge were concerning carbohydrate counting, severe hypoglycaemia and the management of intercurrent illnesses. Young persons living with T1D and their caregivers received their management information from healthcare and non‐healthcare providers. Access to diabetes self‐management education influenced T1D management knowledge and practices. CONCLUSION: Young people living with type 1 diabetes and their caregivers possessed limited scope of knowledge on type 1 diabetes self‐management. Multiple sources of T1D knowledge were found, some of which may not be helpful to patients. The knowledge gaps identified compromises transitional independence and self‐management capacity. RELEVANCE TO CLINICAL PRACTICE: It is important for clinicians and organizations that provide T1D education to provide diabetes self‐management education also on managing hypoglycaemia, carbohydrate counting and managing T1D during intercurrent life events among young people living with T1D. NO PATIENT OR PUBLIC CONTRIBUTION: Patients and their caregivers were interviewed as research participants. They did not conceptualize, analyse, interpret or prepare the manuscript.