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ARS Home » Plains Area » Houston, Texas » Children's Nutrition Research Center » Research » Publications at this Location » Publication #367150

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

item PIHLASKARI, ANDREA - Baylor College Of Medicine
item ANDERSON, BARBARA - Baylor College Of Medicine
item ESHTEHARDI, SAHAR - Baylor College Of Medicine
item MCKINNEY, BRETT - Indiana University
item MARRERO, DAVID - Indiana University
item Thompson, Deborah - Debbe
item HILLIARD, MARISA - Baylor College Of Medicine

Submitted to: Patient Education and Counseling
Publication Type: Peer Reviewed Journal
Publication Acceptance Date: 8/16/2019
Publication Date: 8/23/2019
Citation: Pihlaskari, A.K., Anderson, B.J., Eshtehardi, S.S., McKinney, B.M., Marrero, D.G., Thompson, D.J., Hilliard, M.E. 2019. Diabetes disclosure strategies in adolescents and young adult with type 1 diabetes. Patient Education and Counseling.

Interpretive Summary: Adolescents with type 1 diabetes are at risk for inadequate diabetes self-management. It is well established that puberty interferes with blood glucose control during this period, however, the key role of family in diabetes self-management and blood glucose control was only recently understood. Finding effective ways to establish healthy family communication around diabetes management tasks establishes a pattern of healthy family communications, diabetes self-management, and more optimal blood glucose levels, ultimately leading to decreased risk of health problems associated with diabetes. We adapted an effective face-to-face interventions promoting positive family communication around type 1 diabetes management to an online format and established its feasibility and acceptability with 10-15 year olds with type 1 diabetes and their parents. Positive family communication around type 1 diabetes management tasks have been shown to affect self-management in adolescents, and ultimately, blood glucose levels and disease risk. Converting an effective program to an online format increases its potential reach, and therefore, its impact and public health significance by making it more broadly available to families in a readily accessible, convenient format.

Technical Abstract: 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. 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. 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. 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.