Parental Reports of Stigma Associated with Child’s Disorder of Sex Development

Disorders of sex development (DSD) are congenital conditions in which chromosomal, gonadal, or anatomic sex development is atypical. DSD-associated stigma is purported to threaten positive psychosocial adaptation. Parental perceptions of DSD-related stigma were assessed in 154 parents of 107 childre...

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Main Authors: Aimee M. Rolston, Melissa Gardner, Eric Vilain, David E. Sandberg
Format: Article
Language:English
Published: Wiley 2015-01-01
Series:International Journal of Endocrinology
Online Access:http://dx.doi.org/10.1155/2015/980121
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author Aimee M. Rolston
Melissa Gardner
Eric Vilain
David E. Sandberg
author_facet Aimee M. Rolston
Melissa Gardner
Eric Vilain
David E. Sandberg
author_sort Aimee M. Rolston
collection DOAJ
description Disorders of sex development (DSD) are congenital conditions in which chromosomal, gonadal, or anatomic sex development is atypical. DSD-associated stigma is purported to threaten positive psychosocial adaptation. Parental perceptions of DSD-related stigma were assessed in 154 parents of 107 children (newborn–17 years) questionnaire comprising two scales, child-focused and parent-focused, and three subscales, perceived stigmatization, future worries, and feelings about the child’s condition. Medical chart excerpts identified diagnoses and clinical management details. Stigma scale scores were generally low. Parents of children with DSD reported less stigma than parents of children with epilepsy; however, a notable proportion rated individual items in the moderate to high range. Stigma was unrelated to child’s age or the number of DSD-related surgeries. Child-focused stigma scores exceeded parent-focused stigma and mothers reported more stigma than fathers, with a moderate level of agreement. Within 46,XY DSD, reported stigma was higher for children reared as girls. In conclusion, in this first quantitative study of ongoing experiences, DSD-related stigma in childhood and adolescence, while limited in the aggregate, is reported at moderate to high levels in specific areas. Because stigma threatens positive psychosocial adaptation, systematic screening for these concerns should be considered and, when reported, targeted for psychoeducational counseling.
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spelling doaj-art-094b65623eef48ba9e1a18dc04efdc7f2025-08-20T03:55:28ZengWileyInternational Journal of Endocrinology1687-83371687-83452015-01-01201510.1155/2015/980121980121Parental Reports of Stigma Associated with Child’s Disorder of Sex DevelopmentAimee M. Rolston0Melissa Gardner1Eric Vilain2David E. Sandberg3Department of Pediatrics and Communicable Diseases, University of Michigan, Ann Arbor, MI 48109-5456, USADepartment of Pediatrics and Communicable Diseases, University of Michigan, Ann Arbor, MI 48109-5456, USADepartment of Human Genetics, David Geffen School of Medicine at UCLA, Los Angeles, CA 90095-7088, USADepartment of Pediatrics and Communicable Diseases, University of Michigan, Ann Arbor, MI 48109-5456, USADisorders of sex development (DSD) are congenital conditions in which chromosomal, gonadal, or anatomic sex development is atypical. DSD-associated stigma is purported to threaten positive psychosocial adaptation. Parental perceptions of DSD-related stigma were assessed in 154 parents of 107 children (newborn–17 years) questionnaire comprising two scales, child-focused and parent-focused, and three subscales, perceived stigmatization, future worries, and feelings about the child’s condition. Medical chart excerpts identified diagnoses and clinical management details. Stigma scale scores were generally low. Parents of children with DSD reported less stigma than parents of children with epilepsy; however, a notable proportion rated individual items in the moderate to high range. Stigma was unrelated to child’s age or the number of DSD-related surgeries. Child-focused stigma scores exceeded parent-focused stigma and mothers reported more stigma than fathers, with a moderate level of agreement. Within 46,XY DSD, reported stigma was higher for children reared as girls. In conclusion, in this first quantitative study of ongoing experiences, DSD-related stigma in childhood and adolescence, while limited in the aggregate, is reported at moderate to high levels in specific areas. Because stigma threatens positive psychosocial adaptation, systematic screening for these concerns should be considered and, when reported, targeted for psychoeducational counseling.http://dx.doi.org/10.1155/2015/980121
spellingShingle Aimee M. Rolston
Melissa Gardner
Eric Vilain
David E. Sandberg
Parental Reports of Stigma Associated with Child’s Disorder of Sex Development
International Journal of Endocrinology
title Parental Reports of Stigma Associated with Child’s Disorder of Sex Development
title_full Parental Reports of Stigma Associated with Child’s Disorder of Sex Development
title_fullStr Parental Reports of Stigma Associated with Child’s Disorder of Sex Development
title_full_unstemmed Parental Reports of Stigma Associated with Child’s Disorder of Sex Development
title_short Parental Reports of Stigma Associated with Child’s Disorder of Sex Development
title_sort parental reports of stigma associated with child s disorder of sex development
url http://dx.doi.org/10.1155/2015/980121
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