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. 2019 Jul;48(5):1617-1624.
doi: 10.1007/s10508-018-1357-6. Epub 2019 May 29.

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

Alexandria M Delozier  1 , Kaitlyn L Gamwell  2 , Christina Sharkey  2 , Dana M Bakula  2 , Megan N Perez  2 , Cortney Wolfe-Christensen  3   4 , Paul Austin  5 , Laurence Baskin  6 , Kerlly J Bernabé  7 , Yee-Ming Chan  8 , Earl Y Cheng  9 , David A Diamond  10 , Rebecca E H Ellens  4 , Allyson Fried  11 , Denise Galan  7 , Saul Greenfield  11 , Thomas Kolon  12 , Bradley Kropp  3 , Yegappan Lakshmanan  4 , Sabrina Meyer  11 , Theresa Meyer  9 , Natalie J Nokoff  13 , Kristy J Reyes  3 , Blake Palmer  3 , Dix P Poppas  7 , Alethea Paradis  14 , Amy C Tishelman  15 , Elizabeth B Yerkes  9 , John M Chaney  2 , Amy B Wisniewski  3 , Larry L Mullins  2
Affiliations

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

Alexandria M Delozier et al. Arch Sex Behav. 2019 Jul.

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: DSD; Disorders of sex development; Illness uncertainty; Intersex; Posttraumatic stress.

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Conflict of interest statement

Conflicts of Interest: Dr. Paul Austin - Pediatric advisory group & clinical investigator for Allergan and Dr. Dix Poppas - Co-founder of Promethean Surgical Devices, Inc. No other conflicts of interest.

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