The Impact of Culture on Disclosure in Differences of Sex Development
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In brief
In brief
This article examines how cultural factors influence disclosure practices in differences of sex development (DSD) care across three critical communication levels: family-to-provider, patient-to-family, and provider-to-patient. The authors highlight gaps in research on cultural impacts and advocate for improved communication strategies aligned with DSD consensus guidelines.
Written by the GCMD Library team from the article.
Publication date: Available online 13 September 2019
Source: Seminars in Pediatric Surgery
Author(s): Erica M. Weidler, Karen E. Peterson
Abstract
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.