Psychological Adjustment of Parents of Children Born with Atypical Genitalia 1 Year after Genitoplasty

Rebecca E.H. Ellens*, Dana M. Bakula, Alexandria J. Mullins, Kristy J. Scott Reyes, Paul Austin, Laurence Baskin, Kerlly Bernabé, Earl Y. Cheng, Allyson Fried, Dominic Frimberger, Denise Galan, Lynette Gonzalez, Saul Greenfield, Thomas Kolon, Bradley Kropp, Yegappan Lakshmanan, Sabrina Meyer, Theresa Meyer, Larry L. Mullins, Natalie J. NokoffBlake Palmer, Dix Poppas, Alethea Paradis, Elizabeth Yerkes, Amy B. Wisniewski, Cortney Wolfe-Christensen

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

19 Scopus citations

Abstract

Purpose We examined the psychological adjustment of parents of children born with moderate to severe genital atypia 12 months after their child underwent genitoplasty. Materials and Methods Parents were recruited longitudinally from a multicenter collaboration of 10 pediatric hospitals with specialty care for children with disorders/differences of sex development and/or congenital adrenal hyperplasia. Parents completed measures of depressive and anxious symptoms, illness uncertainty, quality of life, posttraumatic stress and decisional regret. Results Compared to levels of distress at baseline (before genitoplasty) and 6 months after genitoplasty, data from 25 mothers and 20 fathers indicated significant improvements in all psychological distress variables. However, a subset of parents continued endorsing clinically relevant distress. Some level of decisional regret was endorsed by 28% of parents, although the specific decision that caused regret was not specified. Conclusions Overall the majority of parents were coping well 1 year after their child underwent genitoplasty. Level of decisional regret was related to having a bachelor's level of education, increased levels of illness uncertainty preoperatively and persistent illness uncertainty at 12 months after genitoplasty but was unrelated to postoperative complications.

Original languageEnglish (US)
Pages (from-to)914-920
Number of pages7
JournalJournal of Urology
Volume198
Issue number4
DOIs
StatePublished - Oct 2017

Keywords

  • adjustment disorders
  • disorders of sex development
  • gender identity
  • genitalia
  • parents

ASJC Scopus subject areas

  • Urology

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