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Why do parents recommend clitoral surgery? Parental perception of the necessity, benefit, and cost of early childhood clitoral surgery for congenital adrenal hyperplasia (CAH)

Abstract

Historically, medical management of Congenital Adrenal Hyperplasia (CAH) in girls typically involved feminising surgery, which meant reducing the size and/or visibility of the enlarged clitoris. This practice may have become less routine but remains a common response to genital differences associated with CAH. Parents typically give permission for the child to undergo surgery in early childhood and recommend other parents facing a similar situation do the same. The current report is based on a qualitative content analysis of interviews with sixteen parents whose daughters with CAH had undergone one of two forms of clitoral surgery. We observed that: (i) some parents were initially unconcerned about their child’s genital presentation; (ii) in general, clitoral surgery was considered as a readily available and natural response to the child’s bodily difference; (iii) the parents acknowledged that there would be some risk but anticipated various benefits; and (iv) there was an absence of ethical considerations when the parents evaluated the various effects of surgery afterwards. We conclude from our analysis that parents of girls with CAH may not receive psychologically and ethically informed counselling to encourage critical reflections prior to authorizing genital surgery.

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Acknowledgements

We are grateful to the families who participated in this study and to reviewers and editors who urged us to clarify our novel findings and the strengths of this study.

Funding

Funded by ESPE Research Unit (European Society for Paediatric Endocrinology) without input to design, data collection, analysis, interpretation, writing of the manuscript, or in the decision to submit the manuscript.

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Authors

Contributions

JA was responsible for study design, recruitment, conducting the research, report writing and revisions. MS was responsible for recruitment, report and revisions review including illustrative coded quotations data. ECC was responsible for study design, recruitment, revisions reviews including illustrative coded quotations, and data editing, impacting the narrative and conclusions.

Corresponding author

Correspondence to Julie Alderson.

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Competing interests

The authors declare no competing interests.

Ethical approval and consent to participate

The study was approved by the Southwest NHS ethics process (Rec Ref 15/SW/0253). UHB RNI Informed consent was participants completed informed consent was obtained from all participants.

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Alderson, J., Skae, M. & Crowne, E.C. Why do parents recommend clitoral surgery? Parental perception of the necessity, benefit, and cost of early childhood clitoral surgery for congenital adrenal hyperplasia (CAH). Int J Impot Res (2022). https://doi.org/10.1038/s41443-022-00578-0

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  • DOI: https://doi.org/10.1038/s41443-022-00578-0

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