Intersex lived experience: trauma and posttraumatic growth in narratives

References

• Baratz, A. B., & Feder, E. K. (2015). Misrepresentation of evidence favoring early normalizing surgery for atypical sex anatomies. Archives of Sexual Behavior, 44(7), 1761–1763. https://doi.org/10.1007/s10508-015-0529-x
   PubMed Web of Science ®Google Scholar
• Baratz, A. B., & Karkazis, K. (2015). Cris de coeur and the moral imperative to listen to and learn from intersex people. Narrative Inquiry in Bioethics, 5(2), 127–132. https://doi.org/10.1353/nib.2015.0030
   PubMedGoogle Scholar
• Carel, H., & Kidd, I. (2014). Epistemic injustice in healthcare: A philosophical analysis. Medicine, Health Care and Philosophy, 17(4), 529–540. https://doi.org/10.1007/s11019-014-9560-2
   PubMed Web of Science ®Google Scholar
• Carpenter, M. (2016). The human rights of intersex people: Addressing harmful practices and rhetoric of change. Reproductive Health Matters, 24(47), 74–84. https://doi.org/10.1016/j.rhm.2016.06.003
   PubMed Web of Science ®Google Scholar
• Carpenter, M. (2018). The “normalization” of intersex bodies and “othering” of intersex identities in Australia. Journal of Bioethical Inquiry, 15(4), 487–495. https://doi.org/10.1007/s11673-018-9855-8
   PubMed Web of Science ®Google Scholar
• Davis, G. (2014). The power in a name: Diagnostic terminology and diverse experiences. Psychology & Sexuality, 5(1), 15–27. https://doi.org/10.1080/19419899.2013.831212
   Google Scholar
• Davis, G. (2015). Normalizing intersex: The transformative power of stories. Narrative Inquiry in Bioethics, 5(2), 87–89. https://muse.jhu.edu/journals/narrative_inquiry_in_bioethics/v005/5.2.davis.html
   PubMedGoogle Scholar
• Delozier, A., Gamwell, K., Sharkey, C., Bakula, D., Perez, M., Wolfe-Christensen, C., Austin, P., Baskin, L., Bernabé, K., Chan, Y., Cheng, E., Diamond, D., Ellens, R., Fried, A., Galan, D., Greenfield, S., Kolon, T., Kropp, B., Lakshmanan, Y., & Mullins, L. (2019). Uncertainty and posttraumatic stress: Differences between mothers and fathers of infants with disorders of sex development. Archives of Sexual Behavior, 48(5), 1617–1624. https://doi.org/10.1007/s10508-018-1357-6
   PubMed Web of Science ®Google Scholar
• Engberg, H., Möller, A., Hagenfeldt, K., Nordenskjöld, A., & Frisén, L. (2016). The experience of women living with congenital adrenal hyperplasia: Impact of the condition and the care given. Clinical Endocrinology, 85(1), 21–28. https://doi.org/10.1111/cen.13054
   PubMed Web of Science ®Google Scholar
• Fausto-Sterling, A. (2000). Sexing the body: Gender politics and construction of sexuality. Basic Books.
   Google Scholar
• Fricker, M. (2007). Epistemic injustice: Power and the ethics of knowing. Oxford University Press.
   Google Scholar
• Holmes, M. (2011). The intersex enchiridion: Naming and knowledge. Somatechnics, 1(2), 388–411. https://doi.org/10.3366/soma.2011.0026
   Google Scholar
• Hughes, I., Houk, C., Ahmed, S., & Lee, P. (2006). Consensus statement on management of intersex disorders. Archives of Disease in Childhood, 91(7), 554–55463. https://doi.org/10.1016/j.jpurol.2006.03.004
   PubMed Web of Science ®Google Scholar
• Human Rights Watch. (2017). “I want to be like nature made me”: Medically unnecessary surgeries on intersex children in the US. https://www.hrw.org/report/2017/07/25/iwant-be-nature-made-me/medically-unnecessary-surgeries-intersex-children-us
   Google Scholar
• Jones, T., Hart, B., Carpenter, M., Ansara, G., Leonard, W., & Lucke, J. (2016). Intersex: Stories and statistics from Australia. Open Book Publishers. https://doi.org/10.11647/OBP.0089
   Google Scholar
• Kidd, I., & Carel, H. (2018). Healthcare practice, epistemic injustice, and naturalism. Royal Institute of Philosophy Supplement, 84, 211–233. https://doi.org/10.1017/S1358246118000620
   Google Scholar
• Kyriakou, A., Dessens, A., Bryce, J., Iotova, V., Juul, A., Krawczynski, M., Nordenskjöld, A., Rozas, M., Sanders, C., Hiort, O., & Ahmed, S. (2016). Current models of care for disorders of sex development - results from an International survey of specialist centres. Orphanet Journal of Rare Diseases, 11(1), 1–10. https://doi.org/10.1186/s13023-016-0534-8
   PubMedGoogle Scholar
• Laceulle, O., Kleber, R., & Alisic, E. (2015). Children’s experience of posttraumatic growth: Distinguishing general from domain-Specific correlates. Plos One, 10(12), e0145736. https://doi.org/10.1371/journal.pone.0145736
   PubMed Web of Science ®Google Scholar
• Lee, P. A., Nordenström, A., Houk, C. P., Ahmed, S. F., Auchus, R., Baratz, A., … Mazur, T. (2016). Global disorders of sex development update since 2006: Perceptions, approach and care. Hormone Research in Paediatrics, 85(3), 158–180. https://doi.org/10.1159/000442975
   PubMed Web of Science ®Google Scholar
• Liao, L., Hegarty, P., Creighton, S., Lundberg, T., & Roen, K. (2019). Clitoral surgery on minors: An interview study with clinical experts of differences of sex development. BMJ Open, 9(6), e025821. https://doi.org/10.1136/bmjopen-2018-025821
   PubMed Web of Science ®Google Scholar
• Liao, L., Wood, D., & Creighton, S. M. (2015). Parental choice on normalising cosmetic genital surgery: Between a rock and a hard place. British Medical Journal, 351, h5124. https://doi.org/10.1136/bmj.h5124
   PubMed Web of Science ®Google Scholar
• Liao, L. M., & Roen, K. (2019). The role of psychologists in multi-disciplinary teams for intersex/diverse sex development: Interviews with British and Swedish clinical specialists. Psychology & Sexuality, 1–15. https://doi.org/10.1080/19419899.2019.1689158
   Google Scholar
• Lundberg, T., Hegarty, P., & Roen, K. (2018). Making sense of ‘Intersex’ and ‘DSD’: How laypeople understand and use terminology. Psychology & Sexuality, 9(2), 161–173. https://doi.org/10.1080/19419899.2018.1453862
   Web of Science ®Google Scholar
• Machado, P. S., Costa, A. B., Nardi, H. C., Fontanari, A. M. V., Araujo, I. R., & Knauth, D. R. (2016). Follow-up of psychological outcomes of interventions in patients diagnosed with disorders of sexual development: A systematic review. Journal of Health Psychology, 21(10), 2195–2206. https://doi.org/10.1177/1359105315572454
   PubMed Web of Science ®Google Scholar
• Meyer-Bahlburg, H., Khuri, J., Reyes-Portillo, J., & New, M. (2017). Stigma in medical settings as reported retrospectively by women with Congenital Adrenal Hyperplasia (CAH) for their childhood and adolescence. Journal of Pediatric Psychology, 42(5), 496–503. https://doi.org/10.1093/jpepsy/jsw034
   PubMed Web of Science ®Google Scholar
• Meyer-Bahlburg, H. F., Khuri, J., Reyes-Portillo, J., Ehrhardt, A. A., & New, M. I. (2018). Stigma associated with classical congenital adrenal hyperplasia in women’s sexual lives. Archives of Sexual Behavior, 47(4), 943–951. https://doi.org/10.1007/s10508-017-1003-8
   PubMed Web of Science ®Google Scholar
• Morris, B., Lepore, S., Wilson, B., Lieberman, M., Dunn, J., & Chambers, S. (2014). Adopting a survivor identity after cancer in a peer support context. Journal of Cancer Survivorship, 8(3), 427–436. https://doi.org/10.1007/s11764-014-0355-5
   PubMed Web of Science ®Google Scholar
• Reis, E. (2009). Bodies in doubt: An American history of intersex. John Hopkins University Press.
   Google Scholar
• Roen, K. (2016). Clinical intervention and embodied subjectivity: Atypically sexed children and their parents. In M. Holmes (Ed.), Critical intersex (pp. 31–56). Routledge.
   Google Scholar
• Roen, K. (2019). Intersex or diverse sex development: Critical review of psychosocial health care research and indications for practice. The Journal of Sex Research, 56(4–5), 511–528. https://doi.org/10.1080/00224499.2019.1578331
   PubMed Web of Science ®Google Scholar
• Roen, K., Creighton, S., Hegarty, P., & Liao, L. (2018). Vaginal construction and treatment providers’ experiences: A qualitative analysis. Journal of Pediatric and Adolescent Gynecology, 31(3), 247–251. https://doi.org/10.1016/j.jpag.2018.01.001
   PubMed Web of Science ®Google Scholar
• Roen, K., & Pasterski, V. (2014). Psychological research and intersex/DSD: Recent developments and future directions. Psychology & Sexuality, 5(1), 102–116. https://doi.org/10.1080/19419899.2013.831218
   Google Scholar
• Sandberg, D., Gardner, M., Callens, N., & Mazur, T. (2017). Interdisciplinary care in disorders/ differences of sex development (DSD): The psychosocial component of the DSD- Translational research network. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 175(2), 279–292. https://doi.org/10.1002/ajmg.c.31561
   PubMed Web of Science ®Google Scholar
• Sanders, C., Carter, B., & Goodacre, L. (2008). Parents’ narratives about their experiences of their child’s reconstructive genital surgeries for ambiguous genitalia. Journal of Clinical Nursing, 17(23), 3187–3195. https://doi.org/10.1111/j.1365-2702.2007.02006.x
   PubMed Web of Science ®Google Scholar
• Schweizer, K., Brunner, F., Gedrose, B., Handford, C., & Richter-Appelt, H. (2017). Coping with diverse sex development: Treatment experiences and psychosocial support during childhood and adolescence and adult well-being. Journal of Pediatric Psychology, 42(5), 504–519. https://doi.org/10.1093/jpepsy/jsw058
   PubMed Web of Science ®Google Scholar
• Senate of Australia. (2013). Involuntary or coerced sterilisation of intersex people in Australia. https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Involuntary_Sterilisation/Sec_Report/~/media/Committees/Senate/committee/clac_ctte/involuntary_sterilisation/second_report/report.ashx
   Google Scholar
• Simons, J., Gonzalez, J., & Ramdas, M. (2020). Supporting intersex people: Effective academic and career counseling. Journal of LGBT Issues in Counseling, 14(3), 191–209. https://doi.org/10.1080/15538605.2020.1790465
   Web of Science ®Google Scholar
• Smith, J., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis : Theory, method, and research. SAGE.
   Google Scholar
• Streuli, J., Vayena, E., Cavicchia-Balmer, Y., & Huber, J. (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), 1953–1960. https://doi.org/10.1111/jsm.12214
   PubMed Web of Science ®Google Scholar
• Tedeschi, R., & Calhoun, L. (1996). The posttraumatic growth inventory: Measuring the positive legacy of trauma. Journal of Traumatic Stress, 9(3), 455–471. https://doi.org/10.1002/jts.2490090305
   PubMed Web of Science ®Google Scholar
• Tedeschi, R., Shakespeare-Finch, J., Taku, K., & Calhoun, L. (2018). Posttraumatic growth: Theory, research and applications. Routledge.
   Google Scholar
• Timmermans, S., Yang, A., Gardner, M., Keegan, C., Yashar, B., Fechner, P., … Sandberg, D. (2018). Does patient-centered care change genital surgery decisions? The strategic use of clinical uncertainty in disorders of sex development clinics. Journal of Health and Social Behavior, 59(4), 520–535. https://doi.org/10.1177/0022146518802460
   PubMed Web of Science ®Google Scholar
• United Nations Office of the High Commissioner for Human Rights. (2019). Background note on human rights violations against intersex people. https://www.ohchr.org/EN/Issues/Discrimination/Pages/BackgroundViolationsIntersexPeople.aspx
   Google Scholar
• Wolfe-Christensen, C., Wisniewski, A., Mullins, A., Scott Reyes, K., Austin, P., Baskin, L., Bernabé, K., Cheng, E., Fried, A., Frimberger, D., Galan, D., Gonzalez, L., Greenfield, S., Kolon, T., Kropp, B., Lakshmanan, Y., Meyer, S., Meyer, T., Nokoff, N., & Mullins, L. (2016). Changes in levels of parental distress after their child with atypical genitalia undergoes genitoplasty. Journal of Pediatric Urology, 13(1), 32–e1. https://doi.org/10.1016/j.jpurol.2016.10.024
   PubMed Web of Science ®Google Scholar