Parents need to protect: influences, risks and tensions for parents of prepubertal children born with ambiguous genitalia

Abstract

Aim and objectives.  The aim of the study was to explore parents’ experiences of and the influences, risks and tensions associated with their child’s genital ambiguity and the place reconstructive surgeries had in their lives.

Background.  Research into the clinical management of disorders of sex development is a complex and growing field of study. A small number of studies have indicated that the decisions parents make with regard to their child’s care during infancy are confounded by moral, social and emotional factors which can influence their choices.

Design.  Narrative methods.

Methods.  In-depth interviews elicited stories from 10 mothers and five fathers of 11 prepubertal children.

Results.  A key theme from the data focused on the parents’ motivations to protect their child from the real or perceived threats arising from other people’s attitudes and responses to their ambiguous genitalia. Several rationales for their protective behaviours were described, which encouraged the parents to actively manage their child’s care.

Conclusion.  The dilemmas that parents face in the complex and challenging situation following the birth of a child with ambiguous genitalia require early support from insightful professionals such as nurses. This support could better prepare the parents to recognise and discuss their protective behaviours and the impact these may have on their child’s future.

Relevance to clinical practice.  These findings draw attention to the parents’ need for nurses to be knowledgeable about the impact that disorders of sex development can have on family’s emotional, psychosocial well-being and decision-making. Nurses’ awareness of the debate surrounding genital surgeries is important if they are to understand the motivations that underpin parents’ decision-making and how to support them sensitively. Nurses are the health professionals who have the most consistent direct contact with these families throughout the child’s life and, therefore, can provide support in the ongoing decision-making process.