The lived experiences of young people (13–16 years) with Type 1 diabetes mellitus and their parents – a qualitative phenomenological study

Abstract

Within a programme of research aiming to develop a technology-based educational intervention for young people with Type 1 diabetes, this study aimed to explore adolescents' and parents' experiences of living with Type 1 diabetes from an interpretive phenomenological perspective. In-depth interviews were conducted with 20 adolescents with Type 1 diabetes from a diabetes clinic in North West England, and 27 of their parents. Living with Type 1 diabetes in adolescence was characterized by three distinct stages: (1) adapting to the diagnosis; (2) learning to live with Type 1 diabetes; (3) becoming independent. Experiential learning was key to adolescents developing self-management skills and independence. Parents and health professionals were instrumental in facilitating environments that gave adolescents the freedom to learn through trial and error. They also provided the support, feedback and discussion necessary to facilitate such learning. For adolescents to become independent in Type 1 diabetes self-management, they must develop capability through experiential learning. It is important that parents and health professionals understand the important role they play in this process and have the skills to support adolescents in this way. Data from this study have been used to develop an online interactive 'Adolescent Diabetes Needs Assessment Tool', which assesses individual learning and support needs to aid the process of feedback and discussion.