‘It was Supposed to be a Secret’: a study of disclosure and stigma as experienced by adults with differences of sex development

References

• Alderson, J., Madill, A., & Balen, A. (2004). Fear of devaluation: Understanding the experience of intersexed women with androgen insensitivity syndrome. British Journal of Health Psychology, 9(1), 81–100. doi:10.1348/135910704322778740
   PubMed Web of Science ®Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. doi:10.1191/1478088706qp063oa
   Google Scholar
• Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. doi:10.1080/2159676X.2019.1628806
   Web of Science ®Google Scholar
• Chelvanayagam, S. (2014). Stigma, taboos, and altered bowel function. Gastrointestinal Nursing, 12(1), 16–22.
   Google Scholar
• Cools, M., Nordenstrom, A., Robeva, R., Hall, J., Westerveld, P., Fluck, C., … Pasterski, V. (2018). Caring for individuals with a difference of sex development (DSD): A consensus statement. Nature Reviews Endocrinology, 14(7), 415–429. doi:10.1038/s41574-018-0010-8
   PubMed Web of Science ®Google Scholar
• Earnshaw, V. A., & Quinn, D. M. (2012). The impact of stigma in healthcare on people living with chronic illnesses. Journal of Health Psychology, 17(2), 157–168. doi:10.1177/1359105311414952
   PubMed Web of Science ®Google Scholar
• Engberg, H., Moller, A., Hagenfeldt, K., Nordenskjold, A., & Frisen, 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. doi:10.1111/cen.13054
   PubMed Web of Science ®Google Scholar
• Feragen, K. B., Heggeli, C., & Wæhre, A. (2019). Livssituasjonen for personer med variasjon i kroppslig kjønnsutvikling i Norge [The life situation for people born with a variation in sex development in Norway]. Retrieved from https://bibliotek.bufdir.no/BUF/101/Livssituasjonen_for_personer_med_variasjon_i_kroppslig_kjonnsutvikling_i_Norge.pdf
   Google Scholar
• García-Acero, M., Moreno, O., Suárez, F., & Rojas, A. (2019). Disorders of sexual development: Current status and progress in the diagnostic approach. Current Urology, 13(4), 169–178. doi:10.1159/000499274
   Google Scholar
• Germain, N., Augustin, M., François, C., Legau, K., Bogoeva, N., Desroches, M., … Sommer, R. (2021 July). Stigma in visible skin diseases - a literature review and development of a conceptual model. Journal of the European Academy of Dermatology and Venereology, 35(7), 1493–1504. doi:10.1111/jdv.17110
   PubMed Web of Science ®Google Scholar
• Goffman, E. (1963). Stigma. Notes on the management of spoiled identity. Englewood Cliffs, NJ: Penguin.
   Google Scholar
• Gubrium, J. F., Holstein, J. A., Marvasti, A. B., & McKinney, K. D. (2012). The SAGE handbook of interview research: The complexity of the craft. London: SAGE Publications, Inc. doi:10.4135/9781452218403
   Google Scholar
• Guntram, L. (2013). “Differently normal” and “normally different”: negotiations of female embodiment in women's accounts of ‘atypical’ sex development. Social Science & Medicine, 98, 232–238. doi:10.1016/j.socscimed.2013.09.018
   PubMed Web of Science ®Google Scholar
• Herlin, M. K., Petersen, M. B., & Brännström, M. (2020). Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome: A comprehensive update. Orphanet Journal of Rare Diseases, 15(1), 1–16. doi:10.1186/s13023-020-01491-9
   PubMed Web of Science ®Google Scholar
• Hiort, O., Birnbaum, W., Marshall, L., Wünsch, L., Werner, R., Schröder, T., … Holterhus, P.-M. (2014). Management of disorders of sex development. Nature Reviews: Endocrinology, 10(9), 520–529. doi:10.1038/nrendo.2014.108
   PubMed Web of Science ®Google Scholar
• Howe, E. G. (2021). People with differences of sexual development: Can we do better? The Journal of Clinical Ethics, 32(1), 3–12.
   PubMedGoogle Scholar
• Hughes, I. A., Nihoul-Fekete, C., Thomas, B., & Cohen-Kettenis, P. T. (2007). Consequences of the ESPE/LWPES guidelines for diagnosis and treatment of disorders of sex development. Best Practice & Research: Clinical Endocrinology & Metabolism, 21(3), 351–365. doi:10.1016/j.beem.2007.06.003
   PubMed Web of Science ®Google Scholar
• Kim, K. S., & Kim, J. (2012). Disorders of sex development. Korean Journal of Urology, 53(1), 1–8. doi:10.4111/kju.2012.53.1.1
   PubMedGoogle Scholar
• Kumar, N, & Cherian, A. (2022). C. Sinha & M. Davenport, Handbook of Pediatric Surgery (pp. 331–336). Springer.
   Google Scholar
• Kvale, S., & Brinkmann, S. (2009). Interviews: Learning the craft of qualitative research interviewing (2nd ed.). London, England: Sage Publications.
   Google Scholar
• Lampalzer, U., Briken, P., & Schweizer, K. (2021). That decision really was mine … ’. Insider perspectives on health care controversies about intersex/diverse sex development. Culture, Health & Sexuality, 23(4), 472–483.
   PubMed Web of Science ®Google Scholar
• Lee, P. A., Houk, C. P., Ahmed, S. F., & Hughes, I. A. (2006). Consensus statement on management of intersex disorders. Pediatrics, 118(2), 488–500. doi:10.1542/peds.2006-0738
   PubMed Web of Science ®Google Scholar
• Lee, P. A., Nordenström, A., Houk, C. P., Ahmed, S. F., Auchus, R., Baratz, A., … Looijenga L. H. III (2016). Global disorders of sex development update since 2006: Perceptions, approach and care. Hormone Research in Paediatrics, 85(3), 158–180. doi:10.1159/000442975
   PubMed Web of Science ®Google Scholar
• Lundberg, T., Donasen, I., Hegarty, P., & Roen, K. (2019). Moving intersex/DSD rights and care forward: Lay understandings of common dilemmas. Journal of Social and Political Psychology, 7(1), 354–377. doi:10.5964/jspp.v7i1.1012
   Google Scholar
• MacKenzie, D., Huntington, A., & Gilmour, J. A. (2009). The experiences of people with an intersex condition: A journey from silence to voice. Journal of Clinical Nursing, 18(12), 1775–1783. doi:10.1111/j.1365-2702.2008.02710.x
   PubMed Web of Science ®Google Scholar
• Malmqvist, E., & Zeiler, K. (2010). Cultural norms, the phenomenology of incorporation, and the experience of having a child born with ambiguous sex. Social Theory and Practice, 36(1), 133–156.
   Google Scholar
• Masnari, O., Schiestl, C., Rössler, J., Gütlein, S. K., Neuhaus, K., Weibel, L., … Landolt, M. A. (2013). Stigmatization predicts psychological adjustment and quality of life in children and adolescents with a facial difference. Journal of Pediatric Psychology, 38(2), 162–172. doi:10.1093/jpepsy/jss106
   PubMed Web of Science ®Google Scholar
• McCauley, E. (2017). Challenges in educating patients and parents about differences in sex development. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(2), 293–299. doi:10.1002/ajmg.c.31563
   PubMed Web of Science ®Google Scholar
• Meyer-Bahlburg, H. F. L., 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. doi:10.1007/s10508-017-1003-8
   PubMed Web of Science ®Google Scholar
• Meyer-Bahlburg, H. F. L., Khuri, J., Reyes-Portillo, J., & New, M. I. (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. doi:10.1093/jpepsy/jsw034
   PubMed Web of Science ®Google Scholar
• Money, J. (1987). Psychologic considerations in patients with ambisexual development. Seminars in Reproductive Medicine, 5(03), 307–313.
   Google Scholar
• Munro, M., Cook, A. M., & Bogart, K. R. (2021). An inductive qualitative content analysis of stigma experienced by people with rare diseases. Psychology & Health, 12(2), 1–16. doi:10.1080/08870446.2021.1912344
   Google Scholar
• Nisbet, M. (2020). An exploration of disclosure and psychological outcomes in individuals with Turner syndrome (D Clin Psy thesis). University of Glasgow, Glasgow. Retrieved from http://theses.gla.ac.uk/81705/
   Google Scholar
• Reis, E. (2019). Did bioethics matter? A history of autonomy, consent, and intersex genital surgery. Medical Law Review, 27(4), 658–674. doi:10.1093/medlaw/fwz007
   PubMed Web of Science ®Google Scholar
• Roen, K. (2018). 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. doi:10.1080/00224499.2019.1578331
   Web of Science ®Google Scholar
• Sanders, C., & Carter, B. (2015). A qualitative study of communication between young women with disorders of sex development and health professionals. Advances in Nursing, 2015, 653624. doi:10.1155/2015/653624
   Google Scholar
• Sax, L. (2002). How common is intersex? A response to Anne Fausto-Sterling. Journal of Sex Research, 39(3), 174–178. doi:10.1080/00224490209552139
   PubMed Web of Science ®Google Scholar
• Shankar, R. K., & Backeljauw, P. F. (2018). Current best practice in the management of Turner syndrome. Therapeutic Advances in Endocrinology and Metabolism, 9(1), 33–40. doi:10.1177/2042018817746291
   PubMed Web of Science ®Google Scholar
• Sharratt, N. D., Williamson, H., Zucchelli, F., & Kiff, J. (2020). Becoming known: Disclosure and exposure of (in) visible difference. Stigma and Health, 5(4), 413.
   Google Scholar
• Sutton, E. J., Young, J., McInerney-Leo, A., Bondy, C. A., Gollust, S. E., & Biesecker, B. B. (2006). Truth-telling and Turner syndrome: The importance of diagnostic disclosure. Journal of Pediatrics, 148(1), 102–107. doi:10.1016/j.jpeds.2005.08.022
   PubMed Web of Science ®Google Scholar
• Tremblay, I., Van Vliet, G., Gonthier, M., & Janvier, A. (2016). Partnering with parents to disclose Klinefelter syndrome to their child. Acta Paediatrica, 105(5), 456–461. doi:10.1111/apa.13301
   PubMed Web of Science ®Google Scholar
• van de Grift, T. C., Cohen-Kettenis, P. T., de Vries, A. L. C., & Kreukels, B. P. C. (2018). Body image and self-esteem in disorders of sex development: A European multicenter study. Health Psychology, 37(4), 334–343. doi:10.1037/hea0000600
   PubMed Web of Science ®Google Scholar
• Weidler, E. M., & Peterson, K. E. (2019). The impact of culture on disclosure in differences of sex development. Seminars in Pediatric Surgery, 28(5), 150840. doi:10.1016/j.sempedsurg.2019.150840
   PubMed Web of Science ®Google Scholar
• Witchel, S. F. (2017). Congenital adrenal hyperplasia. Journal of Pediatric and Adolescent Gynecology, 30(5), 520–534. doi:10.1016/j.jpag.2017.04.001
   PubMed Web of Science ®Google Scholar