Suspended Sorrow: The Crisis in Understanding the Diagnosis for the Mothers of Children with A Disorder of Sex Development

REFERENCES

• Benini, F., Ferrante, A., Po’, C., & Jankovic, M. (2012). The development of practical guidelines for the care of deceased children is perhaps a utopia? Archives of Pediatrics & Adolescent Medicine, 166, 291–292. doi:10.1001/archpediatrics.2011.889
   PubMed Web of Science ®Google Scholar
• Bruner, J. (1990). Acts of meaning. Cambridge, MA: Harvard University Press.
   Google Scholar
• Buckman, R. (2010). Practical plans for difficult conversations in medicine: Strategies that work in breaking bad news. Baltimore, MD: Johns Hopkins University Press.
   Google Scholar
• Butler, J. (2004). Undoing gender. New York, NY: Routledge.
   Google Scholar
• Cadet, P., & Feldman, M. (2011). Pretense of a paradox: Factitious intersex conditions on the Internet. International Journal of Sexual Health, 24, 92–96. doi:10.1080/19317611.2011.629287
   Web of Science ®Google Scholar
• Canguçú-Campinho, A.K., de Sousa Bastos, A.C., & Sampaio Oliveira Lima, I.M. (2011). Ambivalences in the transition to motherhood: The arrival of an intersexual baby. In A.C. de Sousa Bastos, K. Uriko, & J. Valsiner (Eds.), Cultural dynamics of women's lives (pp. 355–381). Charlotte, NC: Information Age.
   Google Scholar
• Cohen Kettenis, P., & Pfäfflin, F. (2003). Transgenderism and intersexuality in childhood and adolescence: Making choice. London, England: Sage.
   Google Scholar
• Crissman, H.P., Warner, L., Gardner, M., Carr, M., Schast, A., Quittner, A.L., Sandberg, D.E. (2011). Children with disorders of sex development: A qualitative study of early parental experience. International Journal of Pediatric Endocrinology, 1, 10. doi:10.1186/1687-9856-2011-10
   Google Scholar
• Diamond, M. (2009). Human intersexuality: Difference or disorder? Archives of Sexual Behavior, 38, 172. doi:10.1007/s10508-008-9438-6
   PubMed Web of Science ®Google Scholar
• Dicé, F., Auricchio, M., Parisi, I., Salerno, M., Santamaria, F., & Valerio, P. (2013). Disorders of sex development: Which frontiers in a scientific, bioethicist and social debate? In Interuniversity Center for Bioethics Research C.I.R.B. (Ed.), Bioethical issues (pp. 181–194). Napoli, Italy: Editoriale Scientifica. . ISBN 978-88-6342-596-3
   Google Scholar
• Douglas, G., Axelrad, M., Brandt, M., Crabtree, E., Dietrich, J., French, S., ,& Sutton, R. (2010). Consensus in guidelines for evaluation of DSD by the Texas Children's Hospital Multidisciplinary Gender Medicine Team. International Journal of Pediatric Endocrinology, 2010, 919707. doi:10.1155/2010/919707
   PubMedGoogle Scholar
• Drescher, J. (2010). Queer diagnoses: Parallels and contrasts in the history of homosexuality, gender variance, and the Diagnostic and Statistical Manual. Archives of Sexual Behavior, 39, 427–460. doi:10.1007/s10508-009-9531-5
   PubMed Web of Science ®Google Scholar
• Dunn, M.J., Rodriguez, E.M., Barnwell, A.S., Grossenbacher, J.C., Vannatta, K., Gerhardt, C.A., & Compas, B.E. (2012). Posttraumatic stress symptoms in parents of children with cancer within six months of diagnosis. Health Psychology, 31, 176–185. doi:10.1037/a0025545
   PubMed Web of Science ®Google Scholar
• Freda, M.F. (2013, May). Lo scaffolding psicologico alla relazione sanitaria. Paper presented at the X National Congress “La ricerca delle buone pratiche in Psicologia della Salute,” Orvieto, Italy.
   Google Scholar
• Freda, M.F., & Martino, M.L. (2014). Health and writing meaning-making processes in the narratives of parents of children with leukemia? Qualitative Health Research, Prepublished, September, 22. doi: 1049732314551059
   Google Scholar
• Gibbins, J., Steinhardt, K., & Beinart, H. (2012). A systematic review of qualitative studies exploring the experience of parents whose child is diagnosed and treated for cancer. Journal of Pediatric Oncology Nursing, 29, 253–271. doi:10.1177/1043454212452791
   PubMed Web of Science ®Google Scholar
• Hall, J.M. (2011). Narrative methods in a study of trauma recovery. Qualitative Health Research, 21, 3–13. doi:10.1177/1049732310377181
   PubMed Web of Science ®Google Scholar
• Holmes, M. (Ed.) (2009). Critical intersex. Farnham, UK: Ashgate.
   Google Scholar
• Hughes, I.A., Lee, P.A., Houk, C., & Ahmed, S.F., in collaboration with the participants in the International Consensus Conference on Intersex organized by the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology. (2006). Consensus statement on management of intersex disorders. Pediatrics, 118, 488–500. doi:10.1542/peds.2006-0738
   Web of Science ®Google Scholar
• Hughes, I.A., Nihoul-Fékété, 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, 351–365.
   PubMed Web of Science ®Google Scholar
• Jones, L. (2009). The third sex: Gender identity development of intersex persons. Graduate Journal of Counseling Psychology, 1, 1–8.
   Google Scholar
• Karkazis, K. (2008). Fixing sex: Intersex, medical authority, and lived experience. Durham, NC: Duke University Press.
   Google Scholar
• Kogan, B.A., Gardner, M., Alpern, A.N., Cohen, L.M., & Grimley, B.M. (2012). Challenges of DSD: Diverse perceptions across stakeholders. Hormone Research in Paediatrics, 78, 40–46. doi:10.1159/000339863
   PubMed Web of Science ®Google Scholar
• Martino, M.L., Freda, M.F., & Camera, F. (2013). Effects of guided written disclosure protocol on mood states and psychological symptoms among parents of off-therapy acute lymphoblastic leukemia children. Journal of Health Psychology, 18, 727–736. doi:10.1177/1359105312462434
   PubMed Web of Science ®Google Scholar
• Meyer-Bahlburg, H.F. (2008). Lignes de conduite pour le traitement des enfants ayant des troubles du développement du sexe. Neuropsychiatrie de l’enfance et de l’adolescence, 56, 339–344. doi:10.1016/j.neurenf.2008.03.010
   Google Scholar
• Neimeyer, R.A. (2002). Editorial: Traumatic loss and the reconstruction of meaning. Journal of Palliative Medicine, 5, 935–942. doi:10.1089/10966210260499177
   PubMedGoogle Scholar
• NEK-CNE-Swiss National Advisory Commission on Biomedical Ethics. (2012). On the management of differences of sex development. Ethical issues relating to ‘intersexuality.’ Retrieved from http://www.nek-cne.ch/fileadmin/nek-cne-dateien/Themen/Stellungnahmen/it/NEK_Intersexualitaet.pdf
   Google Scholar
• Organization Intersex International. (2012). Brief guidelines for intersex allies. Retrieved from http://oii-usa.org/wp-content/uploads/2012/10/Brief-Guidelines-for-Intersex-Allies.pdf
   Google Scholar
• Park, C.L. (2010). Making sense of the meaning literature: An integrative review of meaning making and its effects on adjustment to stressful life events. Psychological Bulletin, 136, 257–301. doi:10.1037/a0018301
   PubMed Web of Science ®Google Scholar
• Richter-Appelt, H. (2007). Intersexualität: Störungen der geschlechtsentwicklung Bundesgesundheitsblatt. Gesundheitsforschung, Gesundheitsschutz, 1, 52–61.
   Google Scholar
• Roen, K., & Pasterskib, V. (2013). Psychological research and intersex/DSD: Recent developments and future directions. Psychology & Sexuality, 1–15. doi:10.1080/19419899.2013.831218
   Google Scholar
• Sandberg, D. (2012). Management of disorders of sex development: Editorial commentary. Pediatric Clinics of North America, 59, 871–880. doi:10.1016/j.pcl.2012.05.010
   PubMed Web of Science ®Google Scholar
• Sandberg, D., Gardner, M., & Cohen-Kettenis, P.T. (2012). Psychological aspects of the treatment of patients with disorders of sex development. Seminars in Reproductive Medicine, 30, 443–452. doi:10.1055/s-0032-1324729
   PubMed Web of Science ®Google Scholar
• Smith, A., & Osborn, M. (2003). Interpretative phenomenological analysis. In J.A. Smith (Ed.), Qualitative psychology: A practical guide to research methods (pp. 53–80). London, England: Sage. ISBN:9781412930840
   Google Scholar
• Streuli, J.C., 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, 1953–1960. doi:10.1111/jsm.12214
   PubMed Web of Science ®Google Scholar
• T’Sjoen, G., De Cuypere, G., Monstrey, S., Hoebeke, P., Kenneth Freedman, F., Appari, M., , & Cools, M. (2010). Male gender identity in complete androgen insensitivity syndrome. Archives of Sexual Behavior, 40, 635–638. doi:10.1007/s10508-010-9624-1
   PubMed Web of Science ®Google Scholar
• Warne, G.L., & Raza, J. (2008). Disorders of sex development (DSD), their presentation and management in different cultures. Reviews in Endocrine and Metabolic Disorders, 9, 227–236. doi:10.1007/s11154-008-9084-2
   PubMed Web of Science ®Google Scholar
• Waters, T.E. A., Shallcross, J.F., & Fivush, R. (2013). The many facets of meaning making: Comparing multiple measures of meaning making and their relations to psychological distress. Memory, 21, 111–124. doi:10.1080/09658211.2012.705300
   PubMed Web of Science ®Google Scholar
• Zucker, K.J. (1999). Intersexuality and gender identity differentiation. Annual Review of Sex Research, 10, 1–69. doi:10.1080/10532528.1999.10559774
   PubMedGoogle Scholar
• Zucker, K.J. (2002). Evaluation of sex and gender assignment decisions in patients with physical intersex conditions: A methodological and statistical note. Journal of Sex & Marital Therapy, 28, 269–274. doi:10.1080/009262302760328307
   PubMed Web of Science ®Google Scholar
• Zucker, K.J. (2005). Measurement of psychosexual differentiation. Archives of Sexual Behavior, 34, 375–388. doi:10.1007/s10508-005-4336-7
   PubMed Web of Science ®Google Scholar
• Zucker, K.J. (2006). Gender identity and intersexuality. In S.E. Sytsma (Ed.), Ethics and intersex: International library of ethics, law and the new medicine ( Vol. 29) (pp. 165–181). Berlin, Germany: Springer. . ISBN: 9781402043130
   Google Scholar
• Zucker, K.J. (2012). Born this way: Comment on factitious intersex conditions. International Journal of Sexual Health, 24, 97–98. doi:10.1080/19317611.2012.685024
   Web of Science ®Google Scholar