Julie Alderson's Research Study

Adjustment, Coping and Psychological Distress in XY Women with Androgen Insensitivity Syndrome (AIS)

Background

Recent publications regarding medical management of AIS refer to the psychological factors associated with the condition and recommend counselling for affected women. Fryer, (1998) [for ref. see bottom of page] highlights the ‘additional problem of psychological management’ of AIS and recommends the counselling of parents and siblings as well as the child, follow up appointments to reinforce information giving, and long term support. He notes that psychological problems in AIS women can be long lasting.

Research regarding the psychological consequences of AIS or other intersex disorders is limited. In a long term psychological evaluation of intersex children, which included 12 CAIS and 8 PAIS females, 5 of the CAIS girls were diagnosed with psychological disorder including depression, anxiety, sexual problems and ‘oppositional defiant disorder’, but none were found to be experiencing gender identity disorder. One of the PAIS girls was diagnosed as having depression, sexual problems, gender identity disorder and deviant gender role (Slijper et al. 1998). In contrast, a questionnaire survey of fourteen AIS respondents of which 10 were CAIS women and 4 were PAIS men, concluded that neither CAIS or PAIS is necessarily associated with a reduced psychological well being (Hines et al., 1998).

A small number of accounts of the mental health problems of AIS and other XY women are available. In “Once a Dark Secret”, a woman with AIS describes the six years following her diagnosis as “spent in periods of deep depression with frequent desires for suicide” (Personal view, The British Medical Journal, 1994). The AIS Support Group UK provide information to clinicians, which describes the psychological distress experienced by this group. These accounts make clear that many AIS women suffer with psychological problems and have sought long term therapy via mental health services. Despite the increasing anecdotal and clinical knowledge of medical and psychological professionals there remains very little research evidence with which to guide the increase in demand for psychological services for people affected by intersex conditions.

Research Question

What are the psychological service needs of XY women with Androgen Insensitivity Syndrome (AIS)?

Aims

• To investigate participants’ experience of being affected by AIS
• To indicate the level and nature of psychological disturbance in XY women with AIS.
• To describe the psychological mechanisms used by respondents in adapting to and coping with AIS.
• To provide initial guidelines on the prevention of psychological problems in XY women with AIS.

Study Design

This is a qualitative study using grounded theory methodology. I‘ll collect the ‘data’ by talking to women about their experience of being affected by AIS. I’ll ask them to talk about their ideas about the need for psychological support at various stages. I’ll also ask about what has been of help or hindrance for themselves and their families. I’ll also ask each participant to fill in two questionnaires which will give a ‘measure’ of how they are now in terms of psychological distress. After each meeting I’ll look careful at what the person has said and then I may get back in touch to check that I understood some aspects correctly.

Timescale

I hope to meet with people from August 1999 to May 2000 and write the final report between May and July 2000. I would like to talk about the finished study at the September 2000 AISSG meeting. I’ll send copies of the report to all participants, and will be happy to discuss it in detail.

General Refs:

Fryer A: The XY Girl; in Paediatric & Adolsecent Gynaecology, Anne S. Garden (Ed.), Arnold (Pub.), 1998

Slijper F.M.E et al: Long-term Psychological Evaluation of Intersex Children. Archives of Sexual Behaviour, 27, No. 2, pp. 125-144,1998

Hines M. et al: Gender Development and Psychological Well Being in Patients with Androgen Insensitivity Syndrome (AIS). Horm. Res. 50 (suppl. 3): p.116, 1998