1. Characterizing Early Psychosocial Functioning of Parents of Children with Moderate to Severe Genital Ambiguity due to Disorders of Sex Development.
- Author
-
Suorsa KI, Mullins AJ, Tackett AP, Reyes KJ, Austin P, Baskin L, Bernabé K, Cheng E, Fried A, Frimberger D, Galan D, Gonzalez L, Greenfield S, Kropp B, Meyer S, Meyer T, Nokoff N, Palmer B, Poppas D, Paradis A, Yerkes E, Wisniewski AB, and Mullins LL
- Subjects
- 46, XX Disorders of Sex Development psychology, Adrenal Hyperplasia, Congenital psychology, Adult, Anxiety Disorders diagnosis, Depressive Disorder diagnosis, Female, Gender Identity, Gonadal Dysgenesis, 46,XY psychology, Humans, Karyotyping, Male, Mass Screening, Stress Disorders, Post-Traumatic diagnosis, Surveys and Questionnaires, Turner Syndrome psychology, Adaptation, Psychological, Anxiety Disorders psychology, Depressive Disorder psychology, Disorders of Sex Development psychology, Parents psychology, Quality of Life psychology, Stress Disorders, Post-Traumatic psychology
- Abstract
Purpose: We examined the psychosocial characteristics of parents of children with disorders of sex development at early presentation to a disorders of sex development clinic. Parental anxiety, depression, quality of life, illness uncertainty and posttraumatic stress symptoms were assessed. Additionally we evaluated the relationship of assigned child gender to parental outcomes., Materials and Methods: A total of 51 parents of children with ambiguous or atypical genitalia were recruited from 7 centers specializing in treatment of disorders of sex development. At initial assessment no child had undergone genitoplasty. Parents completed the Cosmetic Appearance Rating Scale, Beck Anxiety Inventory, Beck Depression Inventory, SF-36, Parent Perception of Uncertainty Scale and Impact of Event Scale-Revised., Results: A large percentage of parents (54.5%) were dissatisfied with the genital appearance of their child, and a small but significant percentage reported symptoms of anxiety, depression, diminished quality of life, uncertainty and posttraumatic stress. Few gender differences emerged., Conclusions: Although many parents function well, a subset experience significant psychological distress around the time of diagnosis of a disorder of sex development in their child. Early screening to assess the need for psychosocial interventions is warranted., (Copyright © 2015 American Urological Association Education and Research, Inc. Published by Elsevier Inc. All rights reserved.)
- Published
- 2015
- Full Text
- View/download PDF