ESPE Abstracts (2018) 89 P-P1-225

Living with Clitoromegaly: Aqualitative Interview Study of Parent's Responses to Clitoromegaly in Congenital Adrenal Hyperplasia (CAH) with or Without Appearance Altering Surgery

Julie Aldersona, Nicky Nicolla, Maia Thorntona, Julie Jonesb, Mars Skaeb & Elizabeth Crownea


aUniversity Hospitals Bristol NHS Foundation Trust, Bristol, UK; bCentral Manchester Foundation Trust, Manchester, UK


Controversy continues regarding surgery in infancy to address atypical genitalia in girls with CAH and other Disorders of Sex Development. There is no consensus to surgical approach. Interest in outcomes of the range of surgical and non-surgical interventions for genital diversity is growing. It is widely acknowledged that the multi-professional management to promote long term psychosocial adaptation of the child based partly on confident parenting is essential. We conducted a study to provide information regarding family responses to clitoromegaly after a range of management strategies. We interviewed 27 parents of girls with CAH age <16 years. Parent interviews focussed on the behaviours and thoughts regarding their daughter’s clitoromegaly during childhood. Using the pattern-based Thematic Analysis and tracking of which children had clitoral reduction surgery, feminising genitoplasty/concealment surgery and those who had had no surgical intervention at all, we explored how families respond to genital difference with and without surgery. We identify the following prominent themes and our key conclusions regarding implications.

Ignorance is bliss: Despite the recommended approach of promoting children’s understanding of their condition families commonly do not discuss genital difference including its past and future treatment. Parental protective strategies ranged from: ‘waiting for the right time’ to ‘occasional untruths’ in response to a child’s questions, creating a situation of parental perception of the child’s state of bliss contrasted with hidden anxiety and worry held by the parents. Implication – parental protection could prevent meaningful psychological adaption during childhood.

No regrets: Parents recognise they had a role and responsibility in multi-professional treatment decisions, but acknowledged a dominant position from professionals regarding management. Despite divergent views across specialist centres, and the range of surgical approaches for similar presentations, the dominant parental belief is that their particular decision and treatment route was correct. Implication - This psychological process may affect patient report outcome measures.

Genital difference remains: Despite different management pathways and early surgical interventions for atypical genitalia, the parents’ perceived need to ‘manage’ genital difference persists. Even in those instances when the child’s genitals are perceived as normal-looking by the parent, the anxiety about surgery, underlying diversity and potential need for future adolescent/adult intervention(s) remains. Implication – Management of the appearance of genital difference can only address some aspects of psychological need.

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