Abstract
This paper builds an argument about genital surgery in the context of medical treatment of children and young people with variations in sex characteristics. First, I set out what is known from existing research including psychological research, surgical follow-up studies and parental regret studies. Second, I present an analysis of surgeons’ talk about children, young people and parents in relation to genital surgery. This paper focuses most specifically on hypospadias surgery, but the argumentation is relevant for other kinds of genital surgery carried out in the context of genital variations. The questions guiding this paper are: what research evidence supports hypospadias surgery and what research evidence brings this surgery into question? How might a new interpretation of the evidence, in light of psychosocial research and human rights concerns, contribute to a new perspective on elective genital surgery on minors with variations in sex characteristics? I draw out implications for clinicians supporting parents to decide whether a surgical pathway is the best option for their child.
This is a preview of subscription content, access via your institution
Access options
Subscribe to this journal
Receive 8 print issues and online access
$259.00 per year
only $32.38 per issue
Buy this article
- Purchase on Springer Link
- Instant access to full article PDF
Prices may be subject to local taxes which are calculated during checkout
Similar content being viewed by others
References
The Brussels Collaboration on Bodily Integrity. Medically unnecessary genital cutting and the rights of the child: moving toward consensus. Am J Bioeth. 2019;19:17–28.
Earp BD, Shahvisi A, Reis-Dennis S, Reis E. The need for a unified ethical stance on child genital cutting. Nurs Ethics. 2021:1–12.
Mendez JE. Report of the special rapporteur on torture, and other cruel, inhuman and degrading punishment. In: 22nd Session of the UN Human Rights Council; 2013.
Streuli JC, Vayena E, Cavicchia-Balmer Y, Huber J. Shaping parents: impact of contrasting professional counseling on parents’ decision making for children with disorders of sex development. J Sex Med. 2013;10:1953–60.
Roen K, Hegarty P. Shaping parents, shaping penises: how medical teams frame parents’ decisions in response to hypospadias. Br J Health Psychol. 2018;23:967–81.
Boyse KL, Gardner M, Marvicsin DJ, Sandberg DE. “It was an overwhelming thing”: parents’ needs after infant diagnosis with congenital adrenal hyperplasia. J Pediatr Nurs. 2014;29:436–41.
Freda MF, Dicé F, Auricchio M, Salerno M, Valerio P. Suspended sorrow: the crisis in understanding the diagnosis for the mothers of children with a disorder of sex development. Int J Sex Health. 2015;27:1–13.
Sanders C, Carter B, Goodacre L. Parents’ narratives about their experiences of their child’s reconstructive genital surgeries for ambiguous genitalia. J Clin Nurs. 2008;17:3187–95.
Crissman HP, Warner L, Gardner M, Carr M, Schast A, Quittner AL, et al. Children with disorders of sex development: a qualitative study of early parental experience. Int J Pediatr Endocrinol. 2011;2011:10.
Lundberg T, Lindström A, Roen K, Hegarty P. From knowing nothing to knowing now: parents’ experiences of caring for their children with congenital adrenal hyperplasia. J Pediatr Psychol. 2017;42:520–9.
Danon LM. The parental struggle with the Israeli genital socialization process. Qualitative Health Res. 2021;31:898–912.
Lorenzo AJ, Pippi Salle JL, Zlateska B, Koyle MA, Bagli MJ, Braga LHP. Decisional regret after distal hypospadias repair: single institution prospective analysis of factors associated with subsequent parental remorse or distress. J Urol. 2014;191:1558–63.
Bethell GS, Chhabra S, Shalaby MS, Corbett H, Kenny SE, Godse A, et al. Parental decisional satisfaction after hypospadias repair in the United Kingdom. J Pediatr Urol. 2020;16:164.e1–.e7.
Ghidini F, Sekulovic S, Castagnetti M. Parental decisional regret after primary distal hypospadias repair: family and surgery variables, and repair outcomes. J Urol. 2016;195:720–4.
Roen K. Intersex or diverse sex development: critical review of psychosocial health care research and indications for practice. J Sex Res. 2019;56:511–28.
Lucas J, Hightower T, Weiss DA, Van Batavia J, Coelho S, Srinivasan AK, et al. Time to complication detection after primary pediatric hypospadias repair: a large, single center, retrospective cohort analysis. J Urol. 2020;204:338–43.
Schneuer FJ, Holland AJA, Pereira G, Bower C, Nassar N. Prevalence, repairs and complications of hypospadias: an Australian population-based study. Arch Dis Child. 2015;100:1038–43.
Hoy NY, Rourke KF. Better defining the spectrum of adult hypospadias: examining the effect of childhood surgery on adult presentation. Urology 2016;99:281–6.
Myers JB, McAninch JW, Erickson BA, Breyer BN. Treatment of adults with complications from previous hypospadias surgery. J Urol. 2012;188:459–63.
Snodgrass W, Villanueva C, Bush N. Primary and reoperative hypospadias repair in adults: are results different than in children? J Urol. 2014;192:1730–3.
Amnesty International. First do no harm: ensuring the rights of children with variations of sex characteristics in Denmark and Germany. London: Amnesty International; 2017.
The European Union Fundamental Rights Agency. The fundamental rights situation of intersex people Vienna: FRA - European Union Agency For Fundamental Rights; 2015. Available from: http://fra.europa.eu/sites/default/files/fra-2015-focus-04-intersex.pdf.
Vavilov S, Smith G, Starkey M, Pockney P, Deshpande AV. Parental decision regret in childhood hypospadias surgery: a systematic review. J Paediatrics Child Health. 2020;56:1514–20.
Liao L-M, Conway GS, Ismail-Pratt I, Bikoo M, Creighton SM. Emotional and sexual wellness and quality of life in women with Rokitansky syndrome. Am J Obstet Gynecol. 2011;205:117.e1–e6.
Roen K, Creighton SM, Hegarty P, Liao L-M. Vaginal construction and treatment providers’ experiences: a qualitative analysis. J Pediatr Adolesc Gynecol. 2018;31:247–51.
Liao L-M, Hegarty P, Creighton S, Lundberg T, Roen K. Clitoral surgery on minors: an interview study with clinical experts of differences of sex development. BMJ Open. 2019;9:e025821.
Danon LM, Krämer A. Between concealing and revealing intersexed bodies: parental strategies. Qualitative Health Res. 2017;27:1562–74.
Sanders C, Carter B, Goodacre L. Searching for harmony: parents’ narratives about their child’s genital ambiguity and reconstructive genital surgeries in childhood. J Adv Nurs. 2011;67:2220–30.
Hegarty P, Prandelli M, Lundberg T, Liao L-M, Creighton S, Roen K. Drawing the line between essential and non-essential interventions on intersex characteristics with European healthcare professionals. Rev Gen Psychol. 2021;25:101–14.
Liao L-M, Roen K. The role of psychologists in multi-disciplinary teams for intersex/diverse sex development: interviews with British and Swedish clinical specialists. Psychol Sexuality. 2021;12:202–16.
Chorney J, Haworth R, Graham ME, Ritchie K, Curran JA, Hong P. Understanding shared decision making in pediatric otolaryngology. Otolaryngol Head Neck Surg. 2015;152:941–7.
Evong Y, Chorney J, Ungar G, Hong P. Perceptions and observations of shared decision making during pediatric otolaryngology surgical consultations. J Otolaryngol Head Neck Surg. 2019;48:28-.
Carr MM, Derr JB, Karikari K. Decisional conflict and regret in parents whose children undergo tonsillectomy. Otolaryngol Head Neck Surg. 2016;155:863–8.
Boland L, Kryworuchko J, Saarimaki A, Lawson ML. Parental decision making involvement and decisional conflict: a descriptive study. BMC Pediatr. 2017;17:146.
Hong P, Maguire E, Purcell M, Ritchie KC, Chorney J. Decision-making quality in parents considering adenotonsillectomy or tympanostomy tube insertion for their children. JAMA Otolaryngol Head Neck Surg. 2017;143:260–6.
Chan KH, Misseri R, Cain MP, Whittam B, Szymanski K, Kaefer M, et al. Provider perspectives on shared decision-making regarding hypospadias surgery. J Pediatr Urol. 2020;16:307–15.
Chan KH, Misseri R, Carroll A, Frankel R, Moore CM, Cockrum B, et al. User-centered development of a hypospadias decision aid prototype. J Pediatr Urol. 2020;16:684.e1–.e9.
Chase C. Genital surgery on children below the age of consent: intersex genital mutilation. In: Szuchman LT, Muscarella F, editors. Psychological Perspectives on Human Sexuality. New York: John Wiley and Sons; 2000.
Davis G. Contesting intersex: the dubious diagnosis. London, England: New York Univ. Press; 2015.
Acknowledgements
I acknowledge collaborators in the SENS research: Lih-Mei Liao, Peter Hegarty, Tove Lundberg and Sarah Creighton.
Funding
The University of Oslo provided funding for research interviews.
Author information
Authors and Affiliations
Contributions
KR was responsible for researching and writing every aspect of this article.
Corresponding author
Ethics declarations
Competing interests
The author declares no competing interest.
Additional information
Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Roen, K. Hypospadias surgery: understanding parental emotions, decisions and regrets. Int J Impot Res 35, 67–71 (2023). https://doi.org/10.1038/s41443-021-00508-6
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1038/s41443-021-00508-6
This article is cited by
-
Child genital cutting and surgery across cultures, sex, and gender. Part 1: female, male, intersex—and trans? The difficulty of drawing distinctions
International Journal of Impotence Research (2023)
-
Child genital cutting and surgery across cultures, sex, and gender. Part 2: assessing consent and medical necessity in “endosex” modifications
International Journal of Impotence Research (2023)