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

Alderson, J., Madill, A. and Balen, A. (2004) Fear of devaluation : understanding the experience of intersexed women with androgen insensitivity syndrome. British Journal of Health Psychology, 9 (1). pp. 81-100. ISSN 1359-107X

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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 United Kingdom-Androgen Insensitivity Syndrome Support Group (UK-AISSG). 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 our 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 (SUPPORT GROUP and TALKING ABOUT AIS).

Conclusions: Participants showed a clear preference for open communication about their condition and we recommend sensitive, pacing of information in order to allow young women and their family to make informed decisions about treatment and a realistic adaptation to life with AIS.

Item Type: Article
Copyright, Publisher and Additional Information: © 2004 British Psychological Society. This is an author produced version of a paper published in British Journal of Health Psychology.
Institution: The University of Leeds
Academic Units: The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Psychology (Leeds)
Depositing User: Repository Officer
Date Deposited: 26 Mar 2007
Last Modified: 04 Jun 2014 10:44
Published Version: http://dx.doi.org/10.1348/135910704322778740
Status: Published
Publisher: British Psychological Society
Refereed: Yes
Identification Number: 10.1348/135910704322778740
URI: http://eprints.whiterose.ac.uk/id/eprint/1476

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