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A Noncategorical Approach to the Psychosocial Care of Persons with DSD and Their Families

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Gender Dysphoria and Disorders of Sex Development

Part of the book series: Focus on Sexuality Research ((FOSR))

Abstract

The 2006 Consensus Statement on Management of Intersex Disorders incorporated all variations in sex development under one superordinate term, disorders of sex development (DSD), and called for care to be delivered by integrated teams that include behavioral health providers. This chapter proposes an integrated team care model that is patient and family centered and attempts to balance the dominating perspective that focuses almost exclusively on gender-related aspects of DSD with one that conceptualizes DSD as a congenital and chronic condition, akin to other pediatric conditions. Ideal DSD team structure and functions are described; emphasis is placed on integrating services and enhancing communication among members of the healthcare team and the family. Evaluation and treatment issues are identified, as well as the need for routine reassessment, given that the importance of particular domains (e.g., sharing information, fertility) varies with developmental stage. A strategy for selecting assessment instruments is outlined, and links are provided to databases of psychometrically robust measures of health-related quality of life as well as narrower domains of function. Because confusion remains, distinctions between DSD and transsexualism are delineated. Finally, barriers to the implementation of the proposed model are considered.

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Acknowledgements

The effort of D.E.S. was supported, in part, by a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (5R01 HD068138, DSD-Translational Research Network). The content is solely the responsibility of the authors and does not necessarily represent the official views of the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health. We gratefully acknowledge the helpful comments of Melissa Gardner.

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Authors and Affiliations

  1. Division of Child Behavioral Health and the Child Health and Evaluation Research (CHEAR) Unit, Department of Pediatrics and Communicable Diseases, University of Michigan Medical School, 300 North Ingalls Building, Room 6C23, Ann Arbor, MI, 48109-5456, USA

    David E. Sandberg Ph.D.

  2. Departments of Psychiatry & Pediatrics, Women and Children’s Hospital of Buffalo and the State University of New York at Buffalo, 219 Bryant Street, Buffalo, NY, 14222, USA

    Tom Mazur Psy.D.

Authors
  1. David E. Sandberg Ph.D.
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  2. Tom Mazur Psy.D.
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Correspondence to David E. Sandberg Ph.D. .

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Editors and Affiliations

  1. Center of Expertise on Gender Dysphoria, Department of Medical Psychology, VU University Medical Center, ...., Amsterdam, 1007 MB, Netherlands

    Baudewijntje P.C. Kreukels

  2. Center of Expertise on Gender Dysphoria, Department of Medical Psychology, VU University Medical Center, Amsterdam, 1007 MB, Netherlands

    Thomas D. Steensma

  3. Center of Expertise on Gender Dysphoria, Department of Child and Adolescent Psych, VU University Medical Center, P.O. Box 7057, Amsterdam, 1007 MB, Netherlands

    Annelou L.C. de Vries

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Sandberg, D.E., Mazur, T. (2014). A Noncategorical Approach to the Psychosocial Care of Persons with DSD and Their Families. In: Kreukels, B., Steensma, T., de Vries, A. (eds) Gender Dysphoria and Disorders of Sex Development. Focus on Sexuality Research. Springer, Boston, MA. https://doi.org/10.1007/978-1-4614-7441-8_5

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