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Int J Pediatr Endocrinol. 2011 Oct 12;2011(1):10. doi: 10.1186/1687-9856-2011-10.

Children with disorders of sex development: A qualitative study of early parental experience.

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Department of Pediatrics & Communicable Diseases Division of Child Behavioral Health University of Michigan Medical School 1500 East Medical Center Drive, SPC 5318 Ann Arbor, Michigan 48109-5318 USA.
Division of Urology The Children's Hospital of Philadelphia Richard D Wood Center, 3rd Floor 34th Street and Civic Center Boulevard Philadelphia, Pennsylvania 19104 USA.
Departments of Psychology & Pediatrics University of Miami 5665 Ponce de Leon Blvd. Coral Gables, Florida 33146-2070 USA.
Division of Urology Department of Surgery Albany Medical College 23 Hackett Boulevard Albany, New York 12208 USA.
Contributed equally



Clinical research on psychological aspects of disorders of sex development (DSD) has focused on psychosexual differentiation with relatively little attention directed toward parents' experiences of early clinical management and their influence on patient and family psychosocial adaptation.


To characterize parental experiences in the early clinical care of children born with DSD.


Content analysis of interviews with parents (n = 41) of 28 children, newborn to 6 years, with DSD.


Four major domains emerged as salient to parents: (1) the gender assignment process, (2) decisions regarding genital surgery, (3) disclosing information about their child's DSD, and (4) interacting with healthcare providers. Findings suggested discordance between scientific and parental understandings of the determinants of "sex" and "gender." Parents' expectations regarding the benefits of genital surgery appear largely met; however, parents still had concerns about their child's future physical, social and sexual development. Two areas experienced by many parents as particularly stressful were: (1) uncertainties regarding diagnosis and optimal management, and (2) conflicts between maintaining privacy versus disclosing the condition to access social support.


Parents' experiences and gaps in understanding can be used to inform the clinical care of patients with DSD and their families. Improving communication between parents and providers (and between parents and their support providers) throughout the early clinical management process may be important in decreasing stress and improving outcomes for families of children with DSD.

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