Parental Estimation of Their Child's Increased Type 1 Diabetes Risk During the First 2 Years of Participation in an International Observational Study: Results From the TEDDY study

TitleParental Estimation of Their Child's Increased Type 1 Diabetes Risk During the First 2 Years of Participation in an International Observational Study: Results From the TEDDY study
Publication TypeJournal Article
Year of Publication2016
AuthorsSwartling, U, Lynch, K, Smith, L, Johnson, SB
JournalJ Empir Res Hum Res Ethics
Volume11
Issue2
Pagination106-14
Date PublishedApr
Publication Languageeng
ISBN Number1556-2646
Keywordschildren , Informed , RISK , screening , Type
AbstractThis study assessed mothers' and fathers' perception of their child's risk of getting type 1 diabetes (T1D) during the first 2 years of their participation in The Environmental Determinants of Diabetes in the Young (TEDDY) study. TEDDY parents were informed of their child's increased genetic risk for T1D at study inception. Parent perception of the child's risk was assessed at 3, 6, 15, and 27 months of age. In families with no history of T1D, underestimation of the child's T1D risk was common in mothers (>38%) and more so in fathers (>50%). The analyses indicated that parental education, country of residence, family history of T1D, household crowding, ethnic minority status, and beliefs that the child's T1D risk can be reduced were factors associated with parental risk perception accuracy. Even when given extensive information about their child's T1D risk, parents often fail to accurately grasp the information provided. This is particularly true for fathers, families from low socioeconomic backgrounds, and those with no family history of T1D. It is important to develop improved tools for risk communication tailored to individual family needs.
Notes1556-2654Swartling, Ulrica Lynch, Kristian Smith, Laura Johnson, Suzanne Bennett TEDDY Study Group HHSN267200700014C/DK/NIDDK NIH HHS/United States U01 DK063790/DK/NIDDK NIH HHS/United States U01 DK063821/DK/NIDDK NIH HHS/United States U01 DK063829/DK/NIDDK NIH HHS/United States U01 DK063836/DK/NIDDK NIH HHS/United States U01 DK063861/DK/NIDDK NIH HHS/United States U01 DK063863/DK/NIDDK NIH HHS/United States U01 DK063865/DK/NIDDK NIH HHS/United States UC4 DK063821/DK/NIDDK NIH HHS/United States UC4 DK063829/DK/NIDDK NIH HHS/United States UC4 DK063836/DK/NIDDK NIH HHS/United States UC4 DK063861/DK/NIDDK NIH HHS/United States UC4 DK063865/DK/NIDDK NIH HHS/United States UC4 DK095300/DK/NIDDK NIH HHS/United States UC4 DK100238/DK/NIDDK NIH HHS/United States UL1 TR000064/TR/NCATS NIH HHS/United States UL1 TR001082/TR/NCATS NIH HHS/United States Journal Article United States J Empir Res Hum Res Ethics. 2016 Apr;11(2):106-14. doi: 10.1177/1556264616648589. Epub 2016 May 30.
DOI10.1177/1556264616648589
Short TitleJournal of empirical research on human research ethics : JERHRE

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