Beyond Glycemic Control: Biographical Disruption and the Lived Experience of Youth with Type 1 Diabetes

Adolescents and young adults living with type 1 diabetes mellitus (T1DM) deal with distinctive challenges that go beyond clinical management. This review synthesizes qualitative evidence to examine how biographical disruption, embodiment, and illness narratives shape the lived experience of this population.

Through a structured search across PubMed, Scopus, and Web of Science, 15 qualitative studies, published over the past decade, were identified. Thematic synthesis was conducted in seven domains: psychological burden, identity, adaptation, social experience, barriers, technology, and recommendations.

Emotional turbulence, anxiety, distress, and fear of hypoglycemia were common amongst adolescents with T1DM. Identity was often a major concern over biomedical risks, showing some gender differences in illness experience. Daily life involved vigilance, and attempts to regain normalcy were common in this population. In social matters, stigma, surveillance, and peer disconnection were prominent, but these concerns were ameliorated by family and friend support. Automated insulin delivery (AID) may cause reduction of burden but increased autonomy, though access was unequal due to economic, educational, and clinical barriers.

Findings emphasized how T1DM portrays disruption in biography, embodiment, and identity in adolescence and young adults, consistent with Charmaz's framework of chronic illness. The absence of multidisciplinary approaches limits the detection of psychosocial needs and still frequently contributes to undesirable results. Culture, gender, and structural inequities shapes how young people experience, manage, and make sense of their condition.

T1DM in youth is a lived reality that reshapes identity, autonomy, and social belonging. Handling biographical disruption requires culturally sensitive, developmentally adapted, and relationally grounded interventions. Future research needs to expand representation and adopt longitudinal studies of adaptation.