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.