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Horm Metab Res 2015; 47(05): 375-379
DOI: 10.1055/s-0034-1398561
Review
© Georg Thieme Verlag KG Stuttgart · New York

Parenting Children with Disorders of Sex Development (DSD): A Developmental Perspective Beyond Gender

A. B. Wisniewski
1   Departmernt of Urology, University of Oklahoma Health Sciences Center, Oklahoma City, USA
,
D. E. Sandberg
2   Department of Pediatrics & Communicable Diseases, University of Michigan, Ann Arbor, USA
› Author Affiliations
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Publication History

received 29 September 2014

accepted 18 December 2014

Publication Date:
05 February 2015 (online)

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Parenting Children with Disorders of Sex Development (DSD): A Developmental Perspective Beyond GenderHorm Metab Res 2015; 47(05): e2-e2
DOI: 10.1055/s-0034-1547252

Abstract

Advances in therapeutics for specific conditions have contributed to a categorical psychological approach to chronic diseases that affect children. Consensus statements and clinical guidelines recognize stress associated with disorders of sex development (DSD) for patients and their caregivers – yet much remains to be learned concerning the social adjustment, mental health, and quality of life of affected children and their families. We present preliminary data on the psychosocial comorbidities of caregivers of children with DSD, including stigma, isolation, stress, anxiety, and depressive symptomatology. Evidence is offered in support of individualized psychological approaches for families according to such variables as: 1) gender of the caregiver, 2) gender of the affected child and 3) presence of genital ambiguity at birth. Development of feasible, targeted interventions to ameliorate psychosocial comorbidities among caregivers is needed to optimize social adjustment, mental health, and health-related quality of life (HRQoL) for children with DSD.

Key words

disorders of sex development - congenital adrenal hyperplasia - androgen insensitivity syndrome - psychosocial - chronic illness - parents
 

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