May, Brenda; (1998) Psychosocial outcome in women with congenital adrenal hyperplasia. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

The thesis reports research examining the psychosocial effects of congenital adrenal hyperplasia (CAH) for a group of adult women. This chronic condition is a genetically transmitted endocrine disorder resulting in high pre- and postnatal levels of androgens, together with possible salt balance problems. For chromosomal females the abnormal androgen levels result in masculinisation of the external genitalia. Life-long medical management necessitates daily administration of replacement hormones, very commonly surgery to feminise the genitalia, and regular hospital outpatient visits. A qualitative methodology was used to investigate the experiences and their meanings that arose from growing up with CAH for N=19 women aged between 18 and 34 years. Comparisons were made with those of an age-matched sample of women with early- diagnosed diabetes (N=17), a chronic condition with many similar demands as CAH. Concepts and relationships between them, identified from interview data, are proposed as either contributing to, or as resulting from the women's perceived need to maintain the 'secret' of their condition. The contributing concepts to this need were communication issues, the perceived value of the hospital clinics, and the level of understanding and the demands made by the condition. The areas of education and employment and social and sexual relationships were identified as effected areas. The findings of the main study were supported by those from a questionnaire study of a group of parents of young girls with CAH; concepts identified from this data reflected those of the main study. The contributions of two cultural discourses - 'the opposite sex' and 'under doctors orders' were considered. The implications of the findings for the future management of those with CAH were considered: these included long-term access to multidisciplinary counselling services with the aims of both providing information and, most importantly, addressing the cultural discourses that effect understanding.

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