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Parents of Children With Newly Diagnosed Disorders of Sex Development Identify Major Concerns: A Qualitative Study.

Publication ,  Journal Article
Boucher, NA; Alkazemi, MH; Tejwani, R; Routh, JC
Published in: Urology
June 2022

OBJECTIVES: To develop a conceptual framework to understand and define the impact of DSD diagnosis and management from the perspective of parents of recently diagnosed children. METHODS: Semi-structured interviews were conducted with parents of children diagnosed with 46 XX, 46 XY, or chromosomal DSD including complete or partial androgen insensitivity, congenital adrenal hyperplasia, or 5-alpha reductase deficiency. Analysis was completed using content analysis with an inductive approach by three coders. RESULTS: Parents of 6 patients agreed to be interviewed, consistent with saturation points for prior similar studies; a total of 16 recurring themes were identified which were further grouped by similarity and categorized into 1 of 3 meta-themes: a) personal impact (effect of diagnosis on parents psyche, happiness, gender/sexual identity, anatomic function, mental health), b) family impact (relationships with parents/siblings, parental guilt); and c) societal impact (bullying, need for secrecy, future desirability, societal openness to DSD individuals). CONCLUSIONS: Personal, family, and societal concerns amongst parents following a DSD diagnosis have significant potential psychosocial impacts for both parents as well children. The nexus between these categories provides a framework for approaching diagnosis and management of DSD and has implications for patients, families, and clinicians. Improved resource allocation, education, and clinical tools conceived through this framework may considerably alleviate potent psychosocial stressors for parents of children born with DSD.

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Published In

Urology

DOI

EISSN

1527-9995

Publication Date

June 2022

Volume

164

Start / End Page

218 / 223

Location

United States

Related Subject Headings

  • Urology & Nephrology
  • Steroid Metabolism, Inborn Errors
  • Parents
  • Humans
  • Disorders of Sex Development
  • Disorder of Sex Development, 46,XY
  • Child
  • Adrenal Hyperplasia, Congenital
  • 3202 Clinical sciences
  • 1103 Clinical Sciences
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Boucher, N. A., Alkazemi, M. H., Tejwani, R., & Routh, J. C. (2022). Parents of Children With Newly Diagnosed Disorders of Sex Development Identify Major Concerns: A Qualitative Study. Urology, 164, 218–223. https://doi.org/10.1016/j.urology.2022.01.001
Boucher, Nathan A., M Hassan Alkazemi, Rohit Tejwani, and Jonathan C. Routh. “Parents of Children With Newly Diagnosed Disorders of Sex Development Identify Major Concerns: A Qualitative Study.Urology 164 (June 2022): 218–23. https://doi.org/10.1016/j.urology.2022.01.001.
Boucher NA, Alkazemi MH, Tejwani R, Routh JC. Parents of Children With Newly Diagnosed Disorders of Sex Development Identify Major Concerns: A Qualitative Study. Urology. 2022 Jun;164:218–23.
Boucher, Nathan A., et al. “Parents of Children With Newly Diagnosed Disorders of Sex Development Identify Major Concerns: A Qualitative Study.Urology, vol. 164, June 2022, pp. 218–23. Pubmed, doi:10.1016/j.urology.2022.01.001.
Boucher NA, Alkazemi MH, Tejwani R, Routh JC. Parents of Children With Newly Diagnosed Disorders of Sex Development Identify Major Concerns: A Qualitative Study. Urology. 2022 Jun;164:218–223.
Journal cover image

Published In

Urology

DOI

EISSN

1527-9995

Publication Date

June 2022

Volume

164

Start / End Page

218 / 223

Location

United States

Related Subject Headings

  • Urology & Nephrology
  • Steroid Metabolism, Inborn Errors
  • Parents
  • Humans
  • Disorders of Sex Development
  • Disorder of Sex Development, 46,XY
  • Child
  • Adrenal Hyperplasia, Congenital
  • 3202 Clinical sciences
  • 1103 Clinical Sciences