Journal
SEMINARS IN PEDIATRIC SURGERY
Volume 28, Issue 5, Pages -Publisher
ELSEVIER SCIENCE INC
DOI: 10.1016/j.sempedsurg.2019.150840
Keywords
Differences of sex development; Reproductive differences; Disorder of sex development; Culture; Disclosure
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Funding
- Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health [R01 HD093450]
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Differences of sex development (DSD) include a variety of complex congenital genitourinary abnormalities-whether sporadic or hereditary. The 2006 DSD Consensus Statement and 2016 Update Consensus Statement encourage better communication among providers, between providers and parents, as well as among providers, parents, and patients when developmentally appropriate.(1,2) However, a lack of clear communication about the diagnosis and its sequelae may occur at three levels: (1) disclosure from DSD patients' families to their physician, (2) disclosure from patients to their families/communities, and (3) disclosure from the physician to the DSD patient. Additionally, there is a paucity of research available on how culture can impact disclosure among individuals with DSDs. This article discusses disclosure among the various stakeholders and briefly explores the impact of cultural expectations and beliefs with regards to disclosure. (C) 2019 Elsevier Inc. All rights reserved.
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