Purpose: The purpose of this study was to explore the emotional work of diabetes during emerging adulthood and to explicate the validity of a newly developed measure of diabetes distress (DD) for use with emerging adults living with type 1 diabetes mellitus (T1DM), the Problem Areas in Diabetes-Emerging Adult version (PAID-EA).
Methods: Young people ages 18 to 30 with T1DM were recruited online to complete a cross-sectional survey including measures of DD, depressive symptomology, and the PAID-EA. To evaluate content validity, 2 open-ended questions asked what was the most significant emotion or worry discussed in the survey items and what feelings were missed in those items. Responses were analyzed using directed qualitative content analysis.
Results: A total of 254 (87%) participants responded to at least 1 of the 2 open-ended questions. Three themes and 1 subtheme were identified: (1) fear of the future with the subtheme of worry about the cost of diabetes, (2) acute worries about living with diabetes, and (3) challenges with finding support. More PAID-EA items corresponded with these themes than items on the original Problem Areas in Diabetes or Center for Epidemiologic Studies Depression Scale, supporting the validity of the PAID-EA and clarifying the developmental-stage-specific aspects of DD.
Conclusions: Emerging adulthood is a period in which the future should hold infinite possibility, but young people with T1DM describe a staggering fear of the future with markedly limited possibilities, supporting the need to measure the developmental-stage-specific experience of DD as captured on the PAID-EA.