Diabetes disclosure strategies in adolescents and young adult with type 1 diabetes

Abstract

Objective: Adolescence and young adulthood have social and developmental challenges that can impact type 1 diabetes (T1D) management. New relationships (e.g. friends, schoolmates, dating partners, teachers, employers) introduce opportunities for disclosure of T1D status. Characterizing how adolescents and young adults (AYAs) disclose having T1D to others may help inform clinical strategies to help AYAs ensure their safety by obtaining social support. Methods: As part of a study about diabetes health-related quality of life across the lifespan, transcriptions of semi-structured qualitative interviews with AYAs with T1D (n = 16, age 12-25 years, mean age 18.7 ± 4.9, 38% female) were coded to derive themes related to T1D disclosure. Results: Participants described three disclosure strategies: (1) Open Disclosure: shares T1D status in straightforward, direct manner and readily requests diabetes-related support; (2) Disclosure Hesitancy: reluctant to tell others about or actively hides having T1D; (3) Passive Disclosure: discloses T1D via other people (e.g., parents) or through others' observation of T1D management tasks. Conclusion: AYAs may benefit from guidance in approaches to informing others about having T1D in different contexts. Identifying individuals' use of these strategies can inform education and intervention strategies aimed at engaging AYAs in healthy T1D-related disclosure to seek and receive support.