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Cited by 29Sexual Differentiation and DisordersLGBTQ Health, Identity, and PolicyEthics and Legal Issues in Pediatric Healthcare

The impact of culture on disclosure in differences of sex development

Weidler, Erica M., Peterson, Karen E.·2019·Seminars in Pediatric Surgery
DOI 10.1016/j.sempedsurg.2019.150840PMC PMC6919323
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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.

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  • Delayed diagnosis, emotional, and gender assignment problems negatively influence quality of life.

    “Delayed diagnosis (557,734), emotional (731), and gender assignment problems (732,735) negatively influence quality of life (560,736).”

    From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [560]

    In HOW CULTURE CAN AFFECT DISCLOSURE (page unavailable), the paper says pressure to choose a gender can cause stress and that historical gender-assignment practices may be psychologically damaging. It also calls for attention to quality of life. It does not establish that delayed diagnosis, emotional problems, and gender-assignment problems each negatively affect quality of life. (LLM, conf=0.79)

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  • Myths and misconceptions about ambiguous genitalia in certain communities may lead to discrimination against patients and families.

    “Myths and misconceptions about ambiguous genitalia in certain communities may lead to discrimination against patients and families (556,560).”

    From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [560]

  • Pediatric endocrinologists are scarce, and late referral to specialized centers may delay diagnosis and treatment.

    “Pediatric endocrinologists are scarce (560,730,733), and late referral to specialized centers may delay diagnosis and treatment.”

    From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [560]

    The citation is attached to the claim that pediatric endocrinologists are scarce. The paper’s “Lack of Disclosure from Patient to Provider” section discusses the value of knowledgeable multidisciplinary providers, but does not address endocrinologist availability. Searches for scarcity and for delayed referral to specialized centers found no passage establishing either point. (LLM, conf=0.74)

    Experimental — accuracy not yet measured

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Cited by

Sorted by citations

Authors
Weidler, E. M., & Peterson, K. E.
Affiliations
Phoenix Children's Hospital (US)
Corresponding author
Weidler, Erica M.
ORCID
Weidler, Erica M.
Venue
Seminars in Pediatric Surgery
Publisher
Elsevier BV
Published
2019-10
Volume
28
Issue
5
Pages
150840
ISSN
1055-8586 (ISSN-L)
DOI
10.1016/j.sempedsurg.2019.150840
PMC
PMC6919323
OpenAlex
W2972753253
Cited by
29
References
2
Citations by year
2026: 2 · 2025: 3 · 2024: 10 · 2023: 2 · 2022: 9 · 2021: 2 · 2020: 1
FWCI
0.99
Type
journal article
Language
en
Open access
closed
Licence
Locations
  • Seminars in Pediatric Surgery (publishedVersion)
  • PubMed (publishedVersion)
Funders
Eunice Kennedy Shriver National Institute of Child Health and Human Development
Topics
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Molecular Biology › Sexual Differentiation and Disorders
  • Social Sciences › Psychology › Social Psychology › LGBTQ Health, Identity, and Policy
  • Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Ethics and Legal Issues in Pediatric Healthcare
Keywords
disorders of sex development, DSD, disclosure, culture, cultural beliefs, physician-patient communication, parent-physician communication, congenital genitourinary anomalies, diagnosis communication
MeSH terms
Child, Communication, Culture, Humans, Parent-Child Relations, Parents, Professional-Family Relations, Disorders of Sex Development, Disclosure, Social Stigma

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