Parents of Children with Ambiguous Genetalia: stories of experiences of reconstructive gential surgeries and finding harmony

Abstract

Title: Parents of children with ambiguous genitalia: Stories of experiences of reconstructive genital surgeries and finding harmony.

Aim: To explore and understand parents' experiences of their child's genital ambiguity and the reconstructive surgeries for ambiguous genitalia that occurred in infancy and middle childhood.

Background: The determination of sex and gender for a child born with ambiguous genitalia is an extremely complex medical and social process. Academic debate, professional practice, the law and increased political and ethical debate have all more recently challenged the evidence base for practice. Currently the 'optimal gender policy' and the 'informed consent policy' drive treatment options. Little research has been conducted to understand the significance gender ambiguity has in parents' lives and how the child's genital surgery affects parents.

Methods: An exploratory design of narrative inquiry was chosen and data were collected through eighteen in-depth narrative interviews with a purposive non-random sample of fifteen parents of 11 children (aged 0-11 years).

Findings: Narrative analysis resulted in three keystone stories which contained in total eight aggregate stories and twenty foundational stories. The three keystone story themes were firstly, parents' stories about their child. Secondly, stories about being a parent of a child with AG and finally stories about healthcare professionals. Interpretation and synthesis of the three keystone stories revealed three core elements fundamental to parents stories; shock protection and anxiety. Parents had to develop new skills in order to deal with the challenges of living with a child with AG. Parents endeavoured to find a sense of harmony from their experiences of shock, anxiety and the need to protect their child. Harmony is a concept that brought consistency and agreement together resulting in parents embracing their experiences holistically and giving their experiences meaning.

Conclusion: Parents overcame the tensions inherent in their experience of their child's AG and found a sense of harmony which has not previously been described in the literature.