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Archives of Sexual Behavior

, Volume 48, Issue 5, pp 1617–1624 | Cite as

Uncertainty and Posttraumatic Stress: Differences Between Mothers and Fathers of Infants with Disorders of Sex Development

  • Alexandria M. DelozierEmail author
  • Kaitlyn L. Gamwell
  • Christina Sharkey
  • Dana M. Bakula
  • Megan N. Perez
  • Cortney Wolfe-Christensen
  • Paul Austin
  • Laurence Baskin
  • Kerlly J. Bernabé
  • Yee-Ming Chan
  • Earl Y. Cheng
  • David A. Diamond
  • Rebecca E. H. Ellens
  • Allyson Fried
  • Denise Galan
  • Saul Greenfield
  • Thomas Kolon
  • Bradley Kropp
  • Yegappan Lakshmanan
  • Sabrina Meyer
  • Theresa Meyer
  • Natalie J. Nokoff
  • Kristy J. Reyes
  • Blake Palmer
  • Dix P. Poppas
  • Alethea Paradis
  • Amy C. Tishelman
  • Elizabeth B. Yerkes
  • John M. Chaney
  • Amy B. Wisniewski
  • Larry L. Mullins
Original Paper
  • 258 Downloads

Abstract

Parents of children with disorders of sex development (DSD) report significant psychological distress, including posttraumatic stress symptoms (PTSS), with mothers consistently reporting higher rates of psychological distress than fathers. However, psychological factors contributing to PTSS in both parents are not well understood. The present study sought to fill this gap in knowledge by examining PTSS and illness uncertainty, a known predictor of psychological distress, in parents of children recently diagnosed with DSD. Participants were 52 mothers (Mage = 32.55 years, SD = 5.08) and 41 fathers (Mage = 35.53 years, SD = 6.78) of 53 infants (Mage = 9.09 months, SD = 6.19) with DSD and associated atypical genital development. Participants were recruited as part of a larger, multisite study assessing parents’ psychosocial response to their child’s diagnosis of DSD. Parents completed measures of illness uncertainty and PTSS. Mothers reported significantly greater levels of PTSS, but not illness uncertainty, than fathers, and were more likely than fathers to report clinical levels of PTSS (21.2% compared to 7.3%). Hierarchical regression revealed that parent sex, undiagnosed or unclassified DSD status, and illness uncertainty were each associated with PTSS. The overall model accounted for 23.5% of the variance associated with PTSS. Interventions targeting illness uncertainty may be beneficial for parents of children with newly diagnosed DSD.

Keywords

Disorders of sex development DSD Intersex Posttraumatic stress Illness uncertainty 

Notes

Acknowledgements

We would like to thank all of the families who have participated in this study.

Funding

This study was funded by National Institutes of Health Grant NICHD R01HD074579.

Compliance with Ethical Standards

Conflict of interest

Dr. Paul Austin—Pediatric Advisory Group and clinical investigator for Allergan and Dr. Dix Poppas—Co-founder of Promethean Surgical Devices, Inc. No other conflicts of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards.

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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • Alexandria M. Delozier
    • 1
    Email author
  • Kaitlyn L. Gamwell
    • 1
  • Christina Sharkey
    • 1
  • Dana M. Bakula
    • 1
  • Megan N. Perez
    • 1
  • Cortney Wolfe-Christensen
    • 2
    • 3
  • Paul Austin
    • 4
  • Laurence Baskin
    • 5
  • Kerlly J. Bernabé
    • 6
  • Yee-Ming Chan
    • 7
  • Earl Y. Cheng
    • 8
  • David A. Diamond
    • 9
  • Rebecca E. H. Ellens
    • 3
  • Allyson Fried
    • 10
  • Denise Galan
    • 6
  • Saul Greenfield
    • 10
  • Thomas Kolon
    • 11
  • Bradley Kropp
    • 2
  • Yegappan Lakshmanan
    • 3
  • Sabrina Meyer
    • 10
  • Theresa Meyer
    • 8
  • Natalie J. Nokoff
    • 12
  • Kristy J. Reyes
    • 2
  • Blake Palmer
    • 2
  • Dix P. Poppas
    • 6
  • Alethea Paradis
    • 13
  • Amy C. Tishelman
    • 14
  • Elizabeth B. Yerkes
    • 8
  • John M. Chaney
    • 1
  • Amy B. Wisniewski
    • 2
  • Larry L. Mullins
    • 1
  1. 1.Department of PsychologyOklahoma State UniversityStillwaterUSA
  2. 2.Department of Pediatric UrologyCook Children’s Medical CenterFort WorthUSA
  3. 3.Department of Pediatric UrologyChildren’s Hospital of MichiganDetroitUSA
  4. 4.Department of UrologyTexas Children’s HospitalHoustonUSA
  5. 5.Department of UrologyUniversity of California San Francisco Medical CenterSan FranciscoUSA
  6. 6.Department of UrologyKomansky Children’s Hospital, New York Presbyterian Weill Cornell MedicineNew YorkUSA
  7. 7.Department of PediatricsBoston Children’s HospitalBostonUSA
  8. 8.Division of UrologyAnn & Robert H. Lurie Children’s Hospital of ChicagoChicagoUSA
  9. 9.Department of UrologyBoston Children’s HospitalBostonUSA
  10. 10.Department of Pediatric UrologyOishei Children’s HospitalBuffaloUSA
  11. 11.Division of UrologyChildren’s Hospital of PhiladelphiaPhiladelphiaUSA
  12. 12.Department of PediatricsUniversity of Colorado Anschutz Medical Campus, Section of EndocrinologyAuroraUSA
  13. 13.Division of Urologic Surgery, Department of SurgeryWashington University School of MedicineSt. LouisUSA
  14. 14.Department of Endocrinology, Department of PsychiatryBoston Children’s Hospital, Harvard Medical SchoolBostonUSA

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