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

Ellens, R. E. H.; Bakula, D. M.; Mullins, A. J.; Scott Reyes, K. J.; Austin, P.; Baskin, L.; Bernabe, K.; Cheng, E. Y.; Fried, A.; Frimberger, D.; Galan, D.; Gonzalez, L.; Greenfield, S.; Kolon, T.; Kropp, B.; Lakshmanan, Y.; Meyer, S.; Meyer, T.; Mullins, L. L.; Nokoff, N. J.; Palmer, B.; Poppas, D.; Paradis, A.; Yerkes, E.; Wisniewski, A. B.; Wolfe-Christensen, C.

J Urol. 2017 May 16; 198(4):914-920


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.

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