RESUMO
PURPOSE: This study explores the disease experience of adolescents and young adults with T1DM focusing on the barriers and facilitators that characterise their disease self-care. Self-care requires complex decision making and cooperation between patients, their families, the healthcare team, and the social support system. Personal and social factors affect self-care, and specific challenges impact adolescents and young adults, putting them at a higher risk of poor glycaemic control and more severe complications. DESIGN AND METHODS: The study uses a qualitative description approach. Twenty-two people (15 women; 10-30 years old; 2-24 years from diagnosis) were purposefully recruited through snowballing techniques. Data were collected with semi-structured interviews and analysed inductively with semantic thematic analysis. RESULTS: Four themes and nine subthemes conceptualise the patients' experience as a life-long journey that has its difficult beginning at the time of diagnosis and continues through the resolution of the initial crisis by integrating disease at the identity level and acquiring expertise. Technology and social environment act both as self-care barriers and facilitators. CONCLUSIONS: Findings highlight the importance of designing and improving technology related to diabetes accounting for patients' experiences. Second, it is imperative to work towards a de-stigmatisation of diabetes. Finally, health professionals should work with people with T1DM on the psychological aspects of the disease and identity integration. PRACTICE IMPLICATIONS: Diabetes-related technology should promote usability and acceptability while addressing visibility and device burden issues. Clinicians should pay particular attention during the transition from the paediatric to the adult centres and offer global assessments and treatment.