TY - JOUR
T1 - Psychological Adjustment of Parents of Children Born with Atypical Genitalia 1 Year after Genitoplasty
AU - Ellens, Rebecca E.H.
AU - Bakula, Dana M.
AU - Mullins, Alexandria J.
AU - Scott Reyes, Kristy J.
AU - Austin, Paul
AU - Baskin, Laurence
AU - Bernabé, Kerlly
AU - Cheng, Earl Y.
AU - Fried, Allyson
AU - Frimberger, Dominic
AU - Galan, Denise
AU - Gonzalez, Lynette
AU - Greenfield, Saul
AU - Kolon, Thomas
AU - Kropp, Bradley
AU - Lakshmanan, Yegappan
AU - Meyer, Sabrina
AU - Meyer, Theresa
AU - Mullins, Larry L.
AU - Nokoff, Natalie J.
AU - Palmer, Blake
AU - Poppas, Dix
AU - Paradis, Alethea
AU - Yerkes, Elizabeth
AU - Wisniewski, Amy B.
AU - Wolfe-Christensen, Cortney
PY - 2017/10
Y1 - 2017/10
N2 - 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.
AB - 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.
KW - adjustment disorders
KW - disorders of sex development
KW - gender identity
KW - genitalia
KW - parents
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U2 - 10.1016/j.juro.2017.05.035
DO - 10.1016/j.juro.2017.05.035
M3 - Article
C2 - 28504212
AN - SCOPUS:85027725566
VL - 198
SP - 914
EP - 920
JO - Journal of Urology
JF - Journal of Urology
SN - 0022-5347
IS - 4
ER -