Qualitative care experiences of emerging adults with type 1 diabetes after transfer to adult care providers

AIMS: Emerging adulthood is a developmental stage, which presents psychosocial, economic and academic challenges to individuals, which are further complicated for people with type 1 diabetes (T1D). While paediatric-based care systems have developed programmes to address the needs of young adults with T1D, adult-based systems have been slower to recognize this need. This qualitative study sought to understand the care experiences of emerging adults to identify barriers to engagement in adult-based care systems. METHODS: A total of 20 young adults with T1D (mean age 26.5 ± 4.5) participated in five focus groups. Focus groups obtained participant reflections on care received during and after transfer to adult-based care. Data were analyzed and coded using thematic analysis and organized using the social ecological model. RESULTS: Key themes across each social ecological model strata emerged from focus group discussions. Provider and clinic-level factors were frequently cited as key barriers to engagement in adult-based clinical practices. In addition, system- and institutional-level gaps led young adults to express a sense that systems at all levels were poorly adapted to address their care needs. Specifically, participants noted a need for high levels of self-advocacy to obtain needed support, difficulty navigating complex health systems and gaps in care coordination between providers and clinics as key barriers to care. CONCLUSIONS: The findings of this study highlight the importance of adapting adult care systems and providers' approaches to meet the self-identified needs of young adults to improve engagement with care and potentially avoid adverse outcomes in this high-risk people population.