Literature DB >> 28504212

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

Rebecca E H Ellens1, Dana M Bakula2, Alexandria J Mullins2, Kristy J Scott Reyes3, Paul Austin4, Laurence Baskin5, Kerlly Bernabé6, Earl Y Cheng7, Allyson Fried8, Dominic Frimberger9, Denise Galan6, Lynette Gonzalez5, Saul Greenfield8, Thomas Kolon10, Bradley Kropp3, Yegappan Lakshmanan11, Sabrina Meyer8, Theresa Meyer7, Larry L Mullins2, Natalie J Nokoff12, Blake Palmer3, Dix Poppas6, Alethea Paradis4, Elizabeth Yerkes7, Amy B Wisniewski3, Cortney Wolfe-Christensen13.   

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.
Copyright © 2017 American Urological Association Education and Research, Inc. Published by Elsevier Inc. All rights reserved.

Entities:  

Keywords:  adjustment disorders; disorders of sex development; gender identity; genitalia; parents

Mesh:

Year:  2017        PMID: 28504212      PMCID: PMC7780837          DOI: 10.1016/j.juro.2017.05.035

Source DB:  PubMed          Journal:  J Urol        ISSN: 0022-5347            Impact factor:   7.450


  24 in total

1.  Short Form 36 (SF-36) Health Survey questionnaire: which normative data should be used? Comparisons between the norms provided by the Omnibus Survey in Britain, the Health Survey for England and the Oxford Healthy Life Survey.

Authors:  A Bowling; M Bond; C Jenkinson; D L Lamping
Journal:  J Public Health Med       Date:  1999-09

2.  Gender differences of parental distress in children with cancer.

Authors:  Chao-Hsing Yeh
Journal:  J Adv Nurs       Date:  2002-06       Impact factor: 3.187

3.  Parental Decisional Regret after Primary Distal Hypospadias Repair: Family and Surgery Variables, and Repair Outcomes.

Authors:  Filippo Ghidini; Sasa Sekulovic; Marco Castagnetti
Journal:  J Urol       Date:  2015-10-27       Impact factor: 7.450

4.  High Levels of Decisional Conflict and Decision Regret When Making Decisions About Biologics.

Authors:  Ellen A Lipstein; Daniel J Lovell; Lee A Denson; Sandra C Kim; Charles Spencer; Richard F Ittenbach; Maria T Britto
Journal:  J Pediatr Gastroenterol Nutr       Date:  2016-12       Impact factor: 2.839

5.  Parents' perception of uncertainty concerning their hospitalized child.

Authors:  M H Mishel
Journal:  Nurs Res       Date:  1983 Nov-Dec       Impact factor: 2.381

6.  Long-term parental psychological distress among parents of children with a malformation--a prospective longitudinal study.

Authors:  Marianne Skreden; Hans Skari; Ulrik F Malt; Guttorm Haugen; Are H Pripp; Anne Faugli; Ragnhild Emblem
Journal:  Am J Med Genet A       Date:  2010-09       Impact factor: 2.802

7.  Characterizing Early Psychosocial Functioning of Parents of Children with Moderate to Severe Genital Ambiguity due to Disorders of Sex Development.

Authors:  Kristina I Suorsa; Alexandria J Mullins; Alayna P Tackett; Kristy J Scott Reyes; Paul Austin; Laurence Baskin; Kerlly Bernabé; Earl Cheng; Allyson Fried; Dominic Frimberger; Denise Galan; Lynette Gonzalez; Saul Greenfield; Bradley Kropp; Sabrina Meyer; Theresa Meyer; Natalie Nokoff; Blake Palmer; Dix Poppas; Alethea Paradis; Elizabeth Yerkes; Amy B Wisniewski; Larry L Mullins
Journal:  J Urol       Date:  2015-07-18       Impact factor: 7.450

8.  Anxiety and stress in mothers and fathers in the 24 h after their child's surgery.

Authors:  S Scrimin; M Haynes; G Altoè; M H Bornstein; G Axia
Journal:  Child Care Health Dev       Date:  2009-03       Impact factor: 2.508

9.  Validation of a decision regret scale.

Authors:  Jamie C Brehaut; Annette M O'Connor; Timothy J Wood; Thomas F Hack; Laura Siminoff; Elisa Gordon; Deb Feldman-Stewart
Journal:  Med Decis Making       Date:  2003 Jul-Aug       Impact factor: 2.583

10.  Examining Associations between Health Information Seeking Behavior and Adult Education Status in the U.S.: An Analysis of the 2012 PIAAC Data.

Authors:  Iris Feinberg; Jan Frijters; Vicki Johnson-Lawrence; Daphne Greenberg; Elena Nightingale; Chelsea Moodie
Journal:  PLoS One       Date:  2016-02-16       Impact factor: 3.240

View more
  12 in total

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

Authors:  Alexandria M Delozier; 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
Journal:  Arch Sex Behav       Date:  2019-05-29

2.  Decisional regret about surgical and non-surgical issues after genitoplasty among caregivers of female infants with CAH.

Authors:  Rachel S Fisher; Hannah C Espeleta; Laurence S Baskin; Cindy L Buchanan; Yee-Ming Chan; Earl Y Cheng; Douglas E Coplen; David A Diamond; Natalie J Nokoff; Blake W Palmer; Dix P Poppas; Kristy J Scott Reyes; Amy Tishelman; Cortney Wolfe-Christensen; Larry L Mullins; Amy B Wisniewski
Journal:  J Pediatr Urol       Date:  2021-10-25       Impact factor: 1.830

3.  Standards of Care for the Health of Transgender and Gender Diverse People, Version 8.

Authors:  E Coleman; A E Radix; W P Bouman; G R Brown; A L C de Vries; M B Deutsch; R Ettner; L Fraser; M Goodman; J Green; A B Hancock; T W Johnson; D H Karasic; G A Knudson; S F Leibowitz; H F L Meyer-Bahlburg; S J Monstrey; J Motmans; L Nahata; T O Nieder; S L Reisner; C Richards; L S Schechter; V Tangpricha; A C Tishelman; M A A Van Trotsenburg; S Winter; K Ducheny; N J Adams; T M Adrián; L R Allen; D Azul; H Bagga; K Başar; D S Bathory; J J Belinky; D R Berg; J U Berli; R O Bluebond-Langner; M-B Bouman; M L Bowers; P J Brassard; J Byrne; L Capitán; C J Cargill; J M Carswell; S C Chang; G Chelvakumar; T Corneil; K B Dalke; G De Cuypere; E de Vries; M Den Heijer; A H Devor; C Dhejne; A D'Marco; E K Edmiston; L Edwards-Leeper; R Ehrbar; D Ehrensaft; J Eisfeld; E Elaut; L Erickson-Schroth; J L Feldman; A D Fisher; M M Garcia; L Gijs; S E Green; B P Hall; T L D Hardy; M S Irwig; L A Jacobs; A C Janssen; K Johnson; D T Klink; B P C Kreukels; L E Kuper; E J Kvach; M A Malouf; R Massey; T Mazur; C McLachlan; S D Morrison; S W Mosser; P M Neira; U Nygren; J M Oates; J Obedin-Maliver; G Pagkalos; J Patton; N Phanuphak; K Rachlin; T Reed; G N Rider; J Ristori; S Robbins-Cherry; S A Roberts; K A Rodriguez-Wallberg; S M Rosenthal; K Sabir; J D Safer; A I Scheim; L J Seal; T J Sehoole; K Spencer; C St Amand; T D Steensma; J F Strang; G B Taylor; K Tilleman; G G T'Sjoen; L N Vala; N M Van Mello; J F Veale; J A Vencill; B Vincent; L M Wesp; M A West; J Arcelus
Journal:  Int J Transgend Health       Date:  2022-09-06

4.  Factor Analysis of the Stigma Scale-Parent Version in Pediatric Disorders/Differences of Sex Development.

Authors:  Katherine A Traino; Marissa N Baudino; Jacob D Kraft; Nathan L Basile; Taylor M Dattilo; Morgan P Davis; Cindy Buchanan; Earl Y Cheng; Dix P Poppas; Amy B Wisniewski; Larry L Mullins
Journal:  Stigma Health       Date:  2021-11

5.  Caregiver Burden Among Those Caring for Patients With Spina Bifida.

Authors:  Michael J Sadighian; Isabelle E Allen; Kathryn Quanstrom; Benjamin N Breyer; Anne M Suskind; Nima Baradaran; Hillary L Copp; Lindsay A Hampson
Journal:  Urology       Date:  2021-04-02       Impact factor: 2.633

6.  Post-operative complications following feminizing genitoplasty in moderate to severe genital atypia: Results from a multicenter, observational prospective cohort study.

Authors:  Avi Baskin; Amy B Wisniewski; Christopher E Aston; Paul Austin; Yee-Ming Chan; Earl Y Cheng; David A Diamond; Allyson Fried; Thomas Kolon; Yegappan Lakshmanan; Pierre Williot; Sabrina Meyer; Theresa Meyer; Bradley Kropp; Natalie Nokoff; Blake Palmer; Alethea Paradis; Dix Poppas; Brian VanderBrink; Kristy J Scott Reyes; Amy Tishelman; Cortney Wolfe-Christensen; Elizabeth Yerkes; Larry L Mullins; Laurence Baskin
Journal:  J Pediatr Urol       Date:  2020-06-01       Impact factor: 1.921

7.  Clitoral surgery on minors: an interview study with clinical experts of differences of sex development.

Authors:  Lih-Mei Liao; Peter Hegarty; Sarah Creighton; Tove Lundberg; Katrina Roen
Journal:  BMJ Open       Date:  2019-06-05       Impact factor: 2.692

8.  Post-operative complications following masculinizing genitoplasty in moderate to severe genital atypia: results from a multicenter, observational prospective cohort study.

Authors:  Christopher J Long; Jason Van Batavia; Amy B Wisniewski; Christopher E Aston; Laurence Baskin; Earl Y Cheng; Yegappan Lakshmanan; Theresa Meyer; Bradley Kropp; Blake Palmer; Natalie J Nokoff; Alethea Paradis; Brian VanderBrink; Kristy J Scott Reyes; Elizabeth Yerkes; Dix P Poppas; Larry L Mullins; Thomas F Kolon
Journal:  J Pediatr Urol       Date:  2021-02-19       Impact factor: 1.921

9.  Illness Uncertainty Longitudinally Predicts Distress Among Caregivers of Children Born With DSD.

Authors:  Caroline M Roberts; Christina M Sharkey; Dana M Bakula; Megan N Perez; Alexandria J Delozier; Paul F Austin; Laurence S Baskin; Yee-Ming Chan; Earl Y Cheng; David A Diamond; Allyson J Fried; Bradley Kropp; Yegappan Lakshmanan; Sabrina Z Meyer; Theresa Meyer; Natalie J Nokoff; Blake W Palmer; Alethea Paradis; Kristy J Scott Reyes; Amy Tishelman; Pierre Williot; Cortney Wolfe-Christensen; Elizabeth B Yerkes; Christopher Aston; Amy B Wisniewski; Larry L Mullins
Journal:  J Pediatr Psychol       Date:  2020-10-01

10.  Controversies on Timing of Sex Assignment and Surgery in Individuals With Disorders of Sex Development: A Perspective.

Authors:  Tatiana Prade Hemesath; Leila Cristina Pedroso de Paula; Clarissa Gutierrez Carvalho; Julio Cesar Loguercio Leite; Guilherme Guaragna-Filho; Eduardo Corrêa Costa
Journal:  Front Pediatr       Date:  2019-01-10       Impact factor: 3.418

View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.