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Abstract
Genital surgery in children with ambiguous or atypical genitalia has been marred by controversies about the appropriateness and timing of surgery, generating clinical uncertainty about decision making. Since 2006, medical experts and patient advocates have argued for putting the child’s needs central as patient-centered care. Based on audio recordings of 31 parent–clinician interactions in three clinics of disorders of sex development, we analyze how parents and clinicians decide on genital surgery. We find that clinicians and parents aim for parent-centered rather than infant-centered care. Parents receive ambivalent messages about surgery: while clinicians express caution, they also present the surgery as beneficial. We examine how parents and clinicians reach agreement about surgery—differentiating parents who push strongly for surgery from parents who do not express any preconceived preferences about surgery and parents who resist surgery. We conclude that clinicians use clinical uncertainty about surgery strategically to direct parents toward perceived clinically appropriate decisions.
References
|
Anspach, Renee . 1993. Deciding Who Lives: Fateful Choices in the Intensive Care Nursery. Berkeley: University of California Press. Google Scholar | |
|
Armstrong, Elisabeth M . 2003. Conceiving Risk, Bearing Responsibility. Baltimore: Johns Hopkins University Press. Google Scholar | |
|
Aronowitz, Robert A . 2008. “Framing Disease: An Underappreciated Mechanism for the Social Paterning of Health.” Social Science & Medicine 67(1):1–9. Google Scholar | Crossref | Medline | ISI | |
|
Barker, Kristin Kay . 2005. The Fibromyalgia Story: Medical Authority and Women’s Worlds of Pain. Philadeplhia, PA: Temple University Press. Google Scholar | |
|
Brennan, Troyen . 1991. Just Doctoring: Medical Ethics in the Liberal State. Berkeley: University of California Press. Google Scholar | Crossref | |
|
Carpenter, Morgan . 2016. “The Human Rights of Intersex People: Addressing Harmful Practices and Rhetoric of Change.” Reproductive Health Matters 24(47):74–84. Google Scholar | Crossref | Medline | |
|
Casper, Monica . 1998. The Making of the Unborn Patient. New Brunswick, NJ: Rutgers University Press. Google Scholar | |
|
Chase, Cheryl . 1993. “Intersexual Rights.” Sciences 33(4):3. Google Scholar | Medline | |
|
Chase, Cheryl . 2013. “What Is the Agenda of the Intersex Patient Advocacy Movement?” Endocrinologist 13(3):240–42. Google Scholar | Crossref | |
|
Colapinto, John . 2000. As Nature Made Him: The Boy Who Was Raised as a Girl. New York: Harper Collins. Google Scholar | |
|
Consortium on the Management of Disorders of Sex Development . 2006. Clinical Guidelines for the Management of Disorders of Sex Development in Childhood. Robert Park, CA: Intersex Society of North America. Google Scholar | |
|
Crissman, Halley P., Warner, Lauren, Gardner, Melissa, Carr, Meagan, Schast, Aileen, Quittner, Alexandra L., Kogan, Barry, Sandberg, David E. 2011. “Children with Disorders of Sex Development: A Qualitative Study of Early Parental Experience.” International Journal of Pediatric Endocrinology 2011(1):10. doi:10.1186/1687-9856-2011-10. Google Scholar | Crossref | Medline | |
|
Crouch, Naomi S., Liao, Lih M., Woodhouse, Christopher R., Conway, Gerard S., Creighton, Sarah M. 2008. “Sexual Function and Genital Sensitivity following Feminizing Genitoplasty for Congenital Adrenal Hyperplasia.” Journal of Urology 179(2):634–38. Google Scholar | Crossref | Medline | |
|
Davis, Georgiann, Murphy, Erin L. 2013. “Intersex Bodies as States of Exception: An Empirical Explanation for Unnecessary Surgical Modification.” Feminist Formations 25(2):129–52. Google Scholar | Crossref | |
|
Davis, Georgiann . 2015. Contesting Intersex: The Dubious Diagnosis. New York: New York University Press. Google Scholar | |
|
Davis, Georgiann, Dewey, Jodie M., Murphy, Erin L. 2016. “Giving Sex: Deconstructing Intersex and Trans Medicalization Practices.” Gender & Society 30(3):490–514. Google Scholar | SAGE Journals | ISI | |
|
Dayner, Jennifer E., Lee, Peter A., Houk, Christopher P. 2004. “Medical Treatment of Intersex: Parental Perspectives.” Journal of Urology 172(4 Pt 2):1762–65. Google Scholar | Medline | |
|
Dreger, Alice D . 1998. ““Ambiguous Sex”—or Ambivalent Medicine? Ethical Issues in the Treatment of Intersexuality.” Hastings Center Report 28(3):24–35. Google Scholar | Crossref | Medline | ISI | |
|
Dreger, Alice D . 2000. “Jarring Bodies: Thoughts on the Display of Unusual Anatomies.” Perspectives in Biology and Medicine 43(2):161–72. Google Scholar | Crossref | Medline | |
|
Fausto-Sterling, Anne . 1993. “The Five Sexes: Why Male and Female Are Not Enough.” Sciences 33(2):20–24. Google Scholar | Crossref | ISI | |
|
Fausto-Sterling, Anne . 2000. Sexing the Body: Gender Politics and the Construction of Sexuality. New York: Basic Books. Google Scholar | |
|
Fox, Renee C . 1957. “Training for Uncertainty.” Pp. 207–41 in The Student Physician, edited by Merton, R. K., Reader, G., Kendall, P. L. Cambridge, MA: Harvard University Press. Google Scholar | Crossref | |
|
Goffman, Erving . 1974. Frame Analysis: An Essay on the Organization of Experience. New York: Harper Torchbooks. Google Scholar | |
|
Gough, Brendan, Weyman, Nicky, Alderson, Julie, Butler, Gary, Stoner, Mandy. 2008. “‘They Did Not Have a Word’: The Parental Quest to Locate a ‘True Sex’ for Their Intersex Children.” Psychology & Health 23(4):493–507. Google Scholar | Crossref | Medline | ISI | |
|
Heimer, Carol A., Staffen, Lisa R. 1998. For the Sake of the Children: The Social Organization of Responsibility in the Hospital and the Home. Chicago: University of Chicago Press. Google Scholar | |
|
Human Rights Watch and InterACT . 2017. “I Want to Be Like Nature Made Me”: Medically Unnecessary Surgeries on Intersex Children in the US. New York: Human Rights Watch. Retrieved July 15, 2018 (https://www.hrw.org/report/2017/07/25/i-want-be-nature-made-me/medically-unnecessary-surgeries-intersex-children-us). Google Scholar | |
|
Institute of Medcine . 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press. Google Scholar | |
|
Karkazis, Katrina . 2008. Fixing Sex: Intersex, Medical Authority, and Lived Experience. Durham, NC: Duke University Press. Google Scholar | Crossref | |
|
Karkazis, Katrina A., Tamar-Mattis, Anne, Kon, Alexander A. 2010. “Genital Surgery for Disorders of Sex Development: Implementing a Shared Decision-making Approach.” Journal of Pediatric Endocrinology and Metabolism 23(8):789–805. Google Scholar | Crossref | Medline | ISI | |
|
Kessler, Suzanne J . 1990. “The Medical Construction of Gender: Case Management of Intersexed Infants.” Signs 16(1):3–26. Google Scholar | Crossref | ISI | |
|
Kessler, Suzanne J . 1998. Lessons from the Intersexed. New Brunswick, NJ: Rutgers University Press. Google Scholar | |
|
Kleinman, Arthur . 1989. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books. Google Scholar | |
|
Lee, Peter A., Houk, Christopher P., Ahmed, Faisal S., Hughes, Ieuan A. 2006. “Consensus Statement on the Management of Intersex Disorders.” Pediatrics 118(2):e488–500. Google Scholar | Crossref | |
|
Lee, Peter A., Nordenstrom, Anna, Houk, Christopher P., Ahmed, S. Faisal, Auchus, Richard, Baratz, Arlene, Dalke, Katharine Baratz, Liao, Lih M., Lin-Su, Karen, Looijenga 3rd, Leendert H., Mazur, Tom, Meyer-Bahlburg, Heino F., Mouriquand, Pierre, Quigley, Charmian A., Sandberg, David E., Vilain, Eric, Witchel, Selma, and D.S.D. Update Consortium Global . 2016. “Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care.” Hormone Research in Paediatrics 85(3):158–80. Google Scholar | Medline | |
|
Legare, France, Witteman, Holly O. 2013. “Shared Decision Making: Examining Key Elements and Barriers to Adoption into Routine Clinical Practice.” Health Affairs 32(2):276–84. Google Scholar | Crossref | |
|
Liao, Lih M., Wood, Dan, Creighton, Sarah M. 2015. “Parental Choice on Normalising Cosmetic Genital Surgery.” BMJ 351:h5124. https://doi.org/10.1136/bmj.h5124. Google Scholar | |
|
Littlejohn, Krystale E., Kimport, Katrina. 2017. “Contesting and Differentially Constructing Uncertainty: Negotiations of Contraceptive Use in the Clinical Encounter.” Journal of Health and Social Behavior 58(4):442–54. Google Scholar | SAGE Journals | |
|
Magritte, Ellie . 2012. “Working Together in Placing the Long Term Interests of the Child at the Heart of the DSD Evaluation.” Journal of Pediatric Urology 8(6):571–75. Google Scholar | Crossref | |
|
Mead, Nicola, Bower, Peter. 2000. “Patient-centredness: A Conceptual Framework and Review of the Empirical Literature.” Social Science & Medicine 51(7):1087–110. Google Scholar | Crossref | Medline | |
|
Michala, Lina, Liao, Lih M., Wood, Dan, Conway, Gerard S., Creighton, Sarah M. 2014. “Practice Changes in Childhood Surgery for Ambiguous Genitalia?” Journal of Pediatric Urology 10(5):934–39. Google Scholar | Crossref | Medline | |
|
Mishler, Elliot . 1984. The Discourse of Medicine: Dialectics of Medical Interviews. Norwood, NJ: Ablex. Google Scholar | |
|
Money, John, Hampson, J. G., Hampson, J. L. 1955. “Hermaphroditism: Recommendations Concerning Assigment of Sex, Change of Sex, and Psychologic Management.” Bulletin of the Johns Hopkins Hospital 97(4):284–300. Google Scholar | Medline | |
|
Parsons, Talcott . 1951. The Social System. Glencoe, IL: Free Press. Google Scholar | |
|
Politi, Mary C., Lewis, Carmen L., Frosch, Dominick L. 2013. “Supporting Shared Decisions When Clinical Evidence Is Low.” Medical Care Research and Review 70(1 Suppl):113S–28S. Google Scholar | SAGE Journals | |
|
Preves, Sharon . 2003. Intersex and Identity: The Contested Self. New Brunswick, NJ: Rutgers University Press. Google Scholar | |
|
Rathert, Cheryl, Wyrwich, Mary D., Boren, Suzanne A. 2013. “Patient-centered Care and Outcomes: A Systematic Review of the Literature.” Medical Care Research and Review 70(4):351–79. Google Scholar | SAGE Journals | |
|
Robinson, Jeff D., Tate, Alexandra, Heritage, John. 2016. “Agenda-setting Revisited: When and How Do Primary-care Physicians Solicit Patients’ Additional Concerns?” Patient Education and Counseling 99(5):718–23. Google Scholar | Crossref | |
|
Rolston, Aimee M., Gardner, Melissa, Vilain, Eric, Sandberg, David E. 2015. “Parental Reports of Stigma Associated with Child’s Disorder of Sex Development.” International Journal of Endocrinology 980121. doi:10.1155/2015/980121. Google Scholar | Crossref | Medline | |
|
Sanders, Caroline, Carter, Bernie, Goodacre, Lynne. 2012. “Parents Need to Protect: Influences, Risks and Tensions for Parents of Prepubertal Children Born with Ambiguous Genitalia.” Journal of Clinical Nursing 21(21/22):3315–23. Google Scholar | Crossref | Medline | |
|
shuster, s. m. 2016. “Uncertain Expertise and the Limitations of Clinical Guidelines in Transgender Healthcare.” Journal of Health and Socical Behavior 57(3):319–32. Google Scholar | Medline | |
|
Starr, Paul . 1982. The Social Transformation of American Medicine: The Rise of a Sovereign Profession and the Making of a Vast Industry. New York: Basic Books. Google Scholar | |
|
Steven, Lisa, Cherian, Abraham, Yankovic, Francisca, Mathur, Azad, Kulkarni, Milind, Cuckow, Peter. 2013. “Current Practice in Paediatric Hypospadias Surgery; A Specialist Survey.” Journal of Pediatric Urology 9(6 Pt B):1126–30. Google Scholar | |
|
Streuli, Jürg C., Vayena, Effy, Cavicchia-Balmer, Yvonne, Huber, Johannes. 2013. “Shaping Parents: Impact of Contrasting Professional Counseling on Parents’ Decision Making for Children with Disorders of Sex Development.” Journal of Sexual Medicine 10(8):1953–60. Google Scholar | Crossref | Medline | |
|
Tamar-Mattis, Anne, Baratz, Arlene, Dalke, Katharine Baratz, Karkazis, Katrina A. 2013. “Emotionally and Cognitively Informed Consent for Clinical Care for Differences of Sex Development.” Psychology and Sexuality 5:44–55. Google Scholar | Crossref | |
|
Tavory, Iddo, Timmermans, Stefan. 2014. Abductive Analysis: Theorizing Qualitative Research. Chicago: University of Chicago Press. Google Scholar | Crossref | |
|
Timmermans, Stefan, Berg, Marc. 2003. The Gold Standard: The Challenge of Evidence-based Medicine and Standardization in Health Care. Philadelphia, PA: Temple University Press. Google Scholar | |
|
Timmermans, Stefan, Buchbinder, Mara. 2013. Saving Babies? The Consequences of Newborn Genetic Screening Chicago: University of Chicago Press. Google Scholar | |
|
Waitzkin, Howard . 1991. The Politics of Medical Encounters: How Patients and Doctors Deal with Social Problems. New Haven, CT: Yale University Press. Google Scholar | |
|
Wisniewski, A. B., Migeon, C. J., Gearhart, J. P., Rock, J. A., Berkovitz, G. D., Plotnick, L. P., Meyer-Bahlburg, H. F., Money, J. 2001. “Congenital Micropenis: Long-term Medical, Surgical and Psychosexual Follow-up of Individuals Raised Male or Female.” Hormone Research 56(1/2):3–11. Google Scholar | Crossref | Medline | |
|
Zeiler, Kristin, Wickstrom, Anette. 2009. “Why Do ‘We’ Perform Surgery on Newborn Intersexed Children? The Phenomenology of the Parental Experience of Having a Child with Intersex Anatomies.” Feminist Theory 10(3):359–77. Google Scholar | SAGE Journals |
