Bringing up an XY Girl: Parents' Experience of Having a Child with Androgen Insensitivity Syndrome

In androgen insensitivity syndrome (AIS), the masculinising hormones produced by the testes are unable to have an effect on the developing, genetically male (46 XY karyotype) foetus. Children with the condition therefore present with a female phenotype but an absence of uterus and ovaries and, at best, a short, blind-ending vagina. Such children are generally raised as girls (Slijper et al., 2000). Previous research has focused on the experience of the individuals with the intersex condition (e.g. Froukje et al., 1998) but little has been published concerning the impact of the condition on parents. Twenty parents of children with AIS were interviewed and the data analysed using a grounded theory methodology to describe the parental experience. The first section of the study considers the overall parental experience from the moment of diagnosis. Parents report feeling devastated by the diagnosis and then isolated and uninformed. The central category for the data relating to this section is seen to be one of powerlessness. Parents commonly have concerns about the impact that the disclosure will have upon their children and are unclear about how and when to give the information. The second section of the study focuses on the disclosure issue and the central category here represents the desire to provide protection. The results of the study offer insight into and enhance understanding of the parental experience. They highlight areas of unmet need which services will need to address and provide many ideas for future research