1. Characterizing Early Psychosocial Functioning of Parents of Children with Moderate to Severe Genital Ambiguity due to Disorders of Sex Development
- Author
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Kerlly J. Bernabé, Allyson Fried, Alayna P. Tackett, Paul F. Austin, Natalie J. Nokoff, Kristy J. Scott Reyes, Theresa Meyer, Dominic Frimberger, Alethea Paradis, Elizabeth B. Yerkes, Laurence S. Baskin, Earl Y. Cheng, Bradley P. Kropp, Larry L. Mullins, Sabrina Meyer, Blake W. Palmer, Kristina I. Suorsa, Dix P. Poppas, Amy B. Wisniewski, Alexandria J. Mullins, Saul P. Greenfield, Denise Galan, and Lynette Gonzalez
- Subjects
Male ,Parents ,disorders of sex development ,6.6 Psychological and behavioural ,46, XX Disorders of Sex Development ,Beck Anxiety Inventory ,Disorders of Sex Development ,Turner Syndrome ,Gonadal Dysgenesis ,XY ,Stress Disorders, Post-Traumatic ,Congenital ,Quality of life ,Surveys and Questionnaires ,Adaptation, Psychological ,Medicine ,Mass Screening ,Depression (differential diagnoses) ,Pediatric ,Gonadal Dysgenesis, 46,XY ,Depression ,Gender Identity ,Urology & Nephrology ,anxiety ,Anxiety Disorders ,Mental Health ,Anxiety ,Female ,medicine.symptom ,Psychosocial ,Adult ,medicine.medical_specialty ,Urology ,Clinical Sciences ,stress disorders ,Article ,XX Disorders of Sex Development ,Clinical Research ,Rating scale ,Behavioral and Social Science ,Humans ,Sex organ ,Adaptation ,Psychiatry ,Adrenal Hyperplasia ,Depressive Disorder ,Adrenal Hyperplasia, Congenital ,business.industry ,Beck Depression Inventory ,Evaluation of treatments and therapeutic interventions ,Brain Disorders ,quality of life ,Karyotyping ,Post-Traumatic ,Quality of Life ,Psychological ,business ,Mind and Body - Abstract
PurposeWe 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 methodsA 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.ResultsA 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.ConclusionsAlthough 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.
- Published
- 2015