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International Journal of Pediatric Endocrinology

, 2011:10

First Online: 12 October 2011Received: 17 June 2011Accepted: 12 October 2011


BackgroundClinical 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.

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

Study DesignContent analysis of interviews with parents n = 41 of 28 children, newborn to 6 years, with DSD.

ResultsFour 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.

ConclusionsParents- 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.

Keywordsdisorders of sex development qualitative content analysis psychosocial health-related quality of life genital surgery parents List of AbbreviationsDSDDisorders of Sex Development

HRQoLHealth Related Quality of Life.

Electronic supplementary materialThe online version of this article doi:10.1186-1687-9856-2011-10 contains supplementary material, which is available to authorized users.

Halley P Crissman, Lauren Warner contributed equally to this work.

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Autor: Halley P Crissman - Lauren Warner - Melissa Gardner - Meagan Carr - Aileen Schast - Alexandra L Quittner - Barry Kogan -


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