The 3i Conceptual Framework for Recognizing Patient Perspectives of Type 1 Diabetes During Emerging Adulthood

IMPORTANCE: Early emerging adulthood, the developmental life stage roughly spanning between the ages of 18 and 24 years, can be a challenging time for individuals living with type 1 diabetes, being associated with an increased risk of acute complications, loss to follow-up, and the emergence of long-term diabetes complications. Few evidence-based interventions exist, and practice guidelines instead emphasize the importance of delivering individualized, developmentally appropriate care. OBJECTIVE: To inform the provision of tailored care and education by illuminating the individual lived experiences of emerging adults with type 1 diabetes. DESIGN, SETTING, AND PARTICIPANTS: This qualitative study used in-depth interviews conducted with 33 emerging adults living with type 1 diabetes between October 14, 2016, and May 16, 2017. Participants were recruited from 2 urban Young Adult Diabetes Clinics in the city of Toronto, Ontario, Canada, using a convenience sampling approach. Narrative analysis of participants’ accounts was conducted inductively to define story typology. MAIN OUTCOMES AND MEASURES: Participant accounts of type 1 diabetes during childhood, adolescence, and emerging adulthood. RESULTS: Interviews were conducted with 33 participants aged 18 to 24 years (mean [SD] age at interview, 20.6 [1.7] years); 17 (51%) were women. Duration of diabetes ranged from 3 to 20 years (mean [SD] duration, 12.0 [4.8] years). Narrative analysis identified 3 distinct story types, or lenses, termed ingrained (n = 14), intrusive (n = 12), and inconspicuous (n = 7). Ingrained narratives portrayed an active integration of diabetes self-management into daily life. Intrusive narratives were characterized by stories of struggles for acceptance and striving for control. Inconspicuous narratives were differentiated by descriptions of a willingness to ignore diabetes and its attendant daily tasks with the goals of preserving normalcy and limiting distress. Mean levels of hemoglobin A(1c) were higher in participants conveying an intrusive lens narrative (mean [SD], 9.3% [1.6%]) than those conveying an ingrained lens (mean [SD], 7.4% [0.7%]) (difference between intrusive and ingrained, 1.9%; 95% CI, 0.8%-2.9%; P = .007) or an inconspicuous lens (mean [SD], 8.6% [1.5%]). CONCLUSIONS AND RELEVANCE: Although every person is unique, there are commonalities in how emerging adults perceive and depict their experiences living with type 1 diabetes. Among the emerging adults interviewed in the present study, the 3i conceptual framework of ingrained, intrusive, and inconspicuous lenses encapsulated these commonalities. Recognition of the different psychosocial contexts surrounding type 1 diabetes during emerging adulthood may help health care professionals individualize their care accordingly.