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Disorders of Sex Development/Intersex: Gaps in Psychosocial Care for Children

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* Abbreviation: DSD — : disorder and/or difference of sex development Access to psychosocial care is currently inadequate for patients and families affected by a disorder of sex development (DSD;… Click to show full abstract

* Abbreviation: DSD — : disorder and/or difference of sex development Access to psychosocial care is currently inadequate for patients and families affected by a disorder of sex development (DSD; some individuals prefer the terms “intersex” or “differences of sex development,” and some do not identify with any of the labels). In 1 recent study of parents of infants with a DSD, only half of those parents who identified a need for emotional support received what they perceived to be adequate psychological care.1 This is troubling in that a case can be made that the primary challenges faced by parents of children newly diagnosed with a DSD are informational and psychosocial, not medical or surgical. Even in the case of life-threatening congenital adrenal hyperplasia, the most common cause of a 46,XX DSD, clinical management pathways are well established and driven by clinical practice guidelines not dissimilar from, for example, type 1 diabetes. In a DSD, however, families grapple with a variety of challenges beyond understanding complex medical and/or genetic information, including stigma-related concerns, coping with anatomical differences (whether or not surgery has occurred), surgical complications, lack of clarity regarding gonadal tumor risk, uncertainty about the stability of the child’s gender identity, fertility potential, and the disruptions and burdens associated with repeated medical visits. Detection of a DSD at birth is commonly a time of particularly acute distress; parents report high levels of emotional upheaval and cognitive confusion that often occurs concomitant with medical and surgical decision-making. There are close to 80 single-gene etiologies for isolated or syndromic DSDs.2 Major categories include genes affecting sex determination (eg, … Address correspondence to Michelle M. Ernst, PhD, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave, Cincinnati, OH 45229. E-mail: michelle.ernst{at}cchmc.org

Keywords: disorders sex; sex development; sex; psychosocial care

Journal Title: Pediatrics
Year Published: 2018

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