Fear of devaluation: Understanding the experience of intersexed women with androgen insensitivity syndrome

OBJECTIVES: We aim to provide an understanding of the psychological sequela of androgen insensitivity syndrome (AIS) in phenotypic females in order to begin to inform psychosocial health care services. DESIGN: Eight adult women with AIS were recruited through the Androgen Insensitivity Syndrome Support Group-United Kingdom (AISSG-UK). Data was collected via two semi-structured interviews with each woman. METHODS: Transcripts were analysed using grounded theory and a conceptual model was developed which suggests a way of understanding the AIS distress experienced by the participants. RESULTS: The pivotal concept is a woman's fear of devaluation. This is connected to her level of adaptation and perception of having a compromised womanhood. These, in turn, are related to her medical management and involvement with others via a support group and in talking about AIS. CONCLUSIONS: Participants showed a clear preference for open communication about their condition throughout the process of medical management. We recommend sensitive, pacing of information to allow young women and their families to make informed decisions about treatment and a realistic adaptation to life with AIS.