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Empirical Studies

Understanding sexual health concerns among adolescents and young adults with differences of sex development: a qualitative study

ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Article: 2204635 | Received 22 Dec 2022, Accepted 14 Apr 2023, Published online: 24 Apr 2023

References

  • Amaral, R. C., Inacio, M., Brito, V. N., Bachega, T. A., Domenice, S., Arnhold, I. J., Madureira, G., Gomes, L., Costa, E. M. F., & Mendonca, B. B. (2015). Quality of life of patients with 46,XX and 46,XY disorders of sex development. Clinical Endocrinology, 82(2), 159–12. https://doi.org/10.1111/cen.12561
  • Asklund, C., Jensen, T. K., Main, K. M., Sobotka, T., Skakkebaek, N. E., & Jorgensen, N. (2010). Semen quality, reproductive hormones and fertility of men operated for hypospadias. International Journal of Andrology, 33(1), 80–87. https://doi.org/10.1111/j.1365-2605.2009.00957.x
  • Boyle, M. E., Smith, S., & Liao, L. M. (2005). Adult genital surgery for intersex: A solution to what problem? Journal of Health Psychology, 10(4), 573–584. https://doi.org/10.1177/1359105305053431
  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
  • Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
  • Brennan, A. M. W., Barnsteiner, J., de Leon Siantz, M. L., Cotter, V. T., & Everett, J. (2012). Lesbian, gay, bisexual, transgendered, or intersexed content for nursing curricula. Journal of Professional Nursing, 28(2), 96–104. https://doi.org/10.1016/j.profnurs.2011.11.004
  • Callens, N., Kreukels, B. P., & van de Grift, T. C. (2021). Young voices: Sexual Health and transition care needs in adolescents with intersex/differences of sex development—a pilot study. Journal of Pediatric and Adolescent Gynecology, 34(2), 176–189. https://doi.org/10.1016/j.jpag.2020.11.001
  • Cools, M., Nordenström, A., Robeva, R., Hall, J., Westerveld, P., Flück, C., Köhler, B., Berra, M., Springer, A., Schweizer, K., & Pasterski, V. (2018). … & COST Action BM1303 working group 1. Nature Reviews Endocrinology, 14(7), 415–429. https://doi.org/10.1038/s41574-018-0010-8
  • Corona, L. E., Hirsch, J., Rosoklija, I., Yerkes, E. B., & Johnson, E. K. (2022). Attitudes toward fertility-related care and education of adolescents and young adults with differences of sex development: Informing future care models. Journal of Pediatric Urology, 18(4), .e491.1–491.9. https://doi.org/10.1016/j.jpurol.2022.05.009
  • Eagly, A. H., Ashmore, R. D., Makhijani, M. G., & Longo, L. C. (1991). What is beautiful is good, but …: A meta-analytic review of research on the physical attractiveness stereotype. Psychological Bulletin, 110(1), 109–128. https://doi.org/10.1037/0033-2909.110.1.109
  • Engberg, H., Strandqvist, A., Berg, E., Nordenskjöld, A., Nordenström, A., Frisén, L., & Hirschberg, A. L. (2022). Sexual function in women with differences of sex development or premature loss of gonadal function. The Journal of Sexual Medicine, 19(2), 249–256. https://doi.org/10.1016/j.jsxm.2021.11.003
  • Giacomini, M. (2010). Theory matters in qualitative health research. In I. Bourgeault, R. Dingwall, & R. DeVries (Eds.), The sage handbook of qualitative methods in health research (pp. 125–156). Sage Publications Ltd.
  • Graugaard, C. (2017). Sexuality as a Health-Promoting Factor—Theoretical and Clinical Considerations. Nature Reviews Urology, 14(10), 577–578. https://doi.org/10.1038/nrurol.2017.117
  • Grymowicz, M., Rudnicka, E., Smolarczyk, K., Smolarczyk, R., Szeliga, A., Podfigurna, A., & Męczekalski, B. (2021). Complete androgen insensitivity syndrome. In P. Igaz (Ed.), Practical clinical endocrinology (pp. 425–431). Springer.
  • Hegde, A., Chandran, S., & Pattnaik, J. I. (2022). Understanding adolescent sexuality: A developmental perspective. Journal of Psychosexual Health, 4(4), 237–242. https://doi.org/10.1177/26318318221107598
  • Herlin, M. K., Petersen, M. B., & Brännström, M. (2020). Mayer-Rokitansky-Kuster-Hauser (MRKH) syndrome: A comprehensive update. Orphanet Journal of Rare Diseases, 15(1), 1–16. https://doi.org/10.1186/s13023-020-01491-9
  • Hughes, I. A., Houk, C., Ahmed, S. F., Lee, P. A., & LWPES Consensus Group, & ESPE Consensus Group. (2006). Consensus statement on management of intersex disorders. Archives of Disease in Childhood, 91(7), 554–563.
  • Köhler, B., Kleinemeier, E., Lux, A., Hiort, O., Grüters, A., Thyen, U., Akkurt, I., Albers, N., Bartsch, O., Becker, D., Beckmann, M. W., Beetz, R. H., Bettendorf, M., Beyer, P., Binder, G., Boemers, T., Brack, C., Caliebe, A., Dietz, H. G. … DSD Network Working Group. (2012). Satisfaction with genital surgery and sexual life of adults with XY disorders of sex development: Results from the German clinical evaluation study. The Journal of Clinical Endocrinology & Metabolism, 97(2), 577–588. https://doi.org/10.1210/jc.2011-1441
  • Kumar, N., & Cherian, A. (2022). Disorders of sex development. In C. Sinha & M. Davenport (Eds.), Handbook of pediatric surgery (pp. 331–336). Springer.
  • Kvale, S., & Brinkmann, S. (2009). Interviews: Learning the craft of qualitative research interviewing (2nd ed. ed.). Sage Publications.
  • Leder, D. (2022). The phenomenology of healing: Eight ways of dealing with the Ill and impaired body. The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine, 47(1), 137–154. https://doi.org/10.1093/jmp/jhab038
  • Lee, P. A., Nordenström, A., Houk, C. P., Ahmed, S. F., Auchus, R., Baratz, A., Baratz Dalke, K., Liao, L. M., Lin-Su, K., Looijenga, L. H., Mazur, T., Meyer-Bahlburg, H. F., Mouriquand, P., Quigley, C. A., Sandberg, D. E., Vilain, E., Witchel, S., & Global DSD Update Consortium. (2016). Global disorders of sex development update since 2006: Perceptions, approach and care. Hormone Research in Paediatrics, 85(3), 158–180.
  • Levitt, H. M., Bamberg, M., Creswell, J. W., Frost, D. M., Josselson, R., & Suárez-Orozco, C. (2018). Journal article reporting standards for qualitative primary, qualitative meta-analytic, and mixed methods research in psychology: the apa publications and communications board task force report. The American Psychologist, 73(1), 26–46. https://doi.org/10.1037/amp0000151
  • Liao, L. -M., Conway, G. S., Ismail-Pratt, I., Bikoo, M., & Creighton, S. M. (2011). Emotional and sexual wellness and quality of life in women with rokitansky syndrome. American Journal of Obstetrics and Gynecology, 205(2), 117.e1–6. https://doi.org/10.1016/j.ajog.2011.03.013.
  • 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
  • Michala, L., & Creighton, S. M. (2010). The XY female. best practice & research. Clinical Obstetrics & Gynaecology, 24(2), 139–148. https://doi.org/10.1016/j.bpobgyn.2009.09.009
  • Örtqvist, L., Fossum, M., Andersson, M., Nordenström, A., Frisen, L., Holmdahl, G., & Nordenskjöld, A. (2017). Sexuality and fertility in men with hypospadias; improved outcome. Andrology, 5(2), 286–293. https://doi.org/10.1111/andr.12309
  • Papadakis, J. L., Poquiz, J. L., Buchanan, C. L., Chan, Y. M., Crerand, C. E., Hansen-Moore, J., Kapa, H. M., Hakata, L., Pratt, K. J., Tishelman, A. C., & Chen, D. (2021). Fertility discussions: Perspectives of adolescents and young adults with differences of sex development. Clinical Practice in Pediatric Psychology, 9(4), 372–383. https://doi.org/10.1037/cpp0000373
  • Quinn, D. M., & Chaudoir, S. R. (2015). Living with a concealable stigmatized identity: the impact of anticipated stigma, centrality, salience, and cultural stigma on psychological distress and health. Stigma and Health, 1(S), 35–59. https://doi.org/10.1037/2376-6972.1.S.35
  • Rew, L. (2006). Sexual health promotion in adolescents with chronic health conditions. Family & Community Health, 29(Supplement), 618–627. https://doi.org/10.1097/00003727-200601001-00010
  • Roen, K. (2019). Intersex or diverse sex development: critical review of psychosocial health care research and indications for practice. Journal of Sex Research, 56(4–5), 511–528. https://doi.org/10.1080/00224499.2019.1578331
  • Sanderson, T., Calnan, M., Morris, M., Richards, P., & Hewlett, S. (2011). Shifting normalities: Interactions of changing conceptions of a normal life and the normalisation of symptoms in rheumatoid arthritis. Sociology of Health & Illness, 33(4), 618–633. https://doi.org/10.1111/j.1467-9566.2010.01305.x
  • Sani, A. M., Soh, K. L., Ismail, I. A., Arshad, M. M., Mungadi, I. A., Yau, S. L., & Soh, K. G. (2019). Experiences of people living with disorders of sex development and sex reassignment: meta‐ethnography of qualitative studies. Journal of Advanced Nursing, 75(2), 277–290. https://doi.org/10.1111/jan.13833
  • Sax, L. (2002). How common is intersex? A response to Anne Fausto-sterling. Journal of Sex Research, 39(3), 174–178. https://doi.org/10.1080/00224490209552139
  • Schönbucher, V. B., Landolt, M. A., Gobet, R., & Weber, D. M. (2008). Psychosexual development of children and adolescents with hypospadias. The Journal of Sexual Medicine, 5(6), 1365–1373. https://doi.org/10.1111/j.1743-6109.2007.00742.x
  • Shenton, A. K. (2004). Strategies for ensuring trustworthiness in qualitative research projects. Education for Information, 22(2), 63–75. https://doi.org/10.3233/EFI-2004-22201
  • Skarin Nordenvall, A., Chen, Q., Norrby, C., Lundholm, C., Frisén, L., Nordenström, A., Almqvist, A., & Nordenskjöld, A. (2020). Fertility in adult men born with hypospadias: A nationwide register‐based cohort study on birthrates, the use of assisted reproductive technologies and infertility. Andrology, 8(2), 372–380. https://doi.org/10.1111/andr.12723
  • Thompson, A., & Kent, G. (2001). Adjusting to disfigurement: Processes involved in dealing with being visibly different. Clinical Psychology Review, 21(5), 663–682. https://doi.org/10.1016/S0272-7358(00)00056-8
  • Tiggemann, M. (2001). Sociocultural perspectives on human appearance and body image. In T. F. Cash & L. Smolak (Eds.), Body image: A handbook of science, practice, and prevention (pp. 12–19). Guilford Press.
  • Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care: Journal of the International Society for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042
  • Toombs, S. K. (1995). The lived experience of disability. Human Studies, 18(1), 9–23. https://doi.org/10.1007/BF01322837
  • Tracy, S. J. (2010). Qualitative quality: Eight “big-tent” criteria for excellent qualitative research. Qualitative Inquiry, 16(10), 837–851. https://doi.org/10.1177/1077800410383121
  • van de Grift, T. C., Rapp, M., Holmdahl, G., Duranteau, L., Nordenskjold, A., Kohler, Dsd‐life Group, B., Neumann, U., Cohen‐kettenis, P., Kreukels, B., de Vries, A., Arlt, W., Wiesemann, C., Slowikowska‐hilczer, J., Thyen, U., Rapp, M., de la Perriere, A. B., Sultan, C., Paris, F. … Szarras‐czapnik, M. (2022). Masculinizing surgery in disorders/differences of sex development: clinician‐ and participant‐evaluated appearance and function. BJU International, 129(3), 394–405. https://doi.org/10.1111/bju.15369
  • Wisniewski, A. B., Batista, R. L., Costa, E. M. F., Finlayson, C., Sircili, M. H. P., Dénes, F. T., Domenice, S., & Mendonca, B. B. (2019). Management of 46,XY differences/disorders of sex development (DSD) throughout life. Endocrine Reviews, 40(6), 1547–1572. https://doi.org/10.1210/er.2019-00049
  • Witchel, S. F. (2017). Congenital adrenal hyperplasia. Journal of Pediatric and Adolescent Gynecology, 30(5), 520–534. https://doi.org/10.1016/j.jpag.2017.04.001
  • World Health Organization. (2015). Sexual health, human rights and the law. World Health Organization. 9789241564984_eng.pdf (who.int)