Dr. Jackie Doyle's Research Study

Women with Conditions such as AIS and their Male Partners

Introduction

My name is Jackie Doyle and I am a researcher completing my doctorate in clinical psychology at the University of East London. I am hoping to recruit women who have conditions such as Androgen Insensitivity Syndrome, which affect the development of internal and/or external genitalia, and their male partners. You and your partner do not have to take part in this study if you do not want to. If you decide to participate you can withdraw from the research at any time without giving a reason. The information below should help you decide if you would like to take part.

Aims of the research

Research conducted with women with conditions such as AIS have suggested that they encounter a number of difficulties, both sexual and non-sexual, within intimate relationships with their male partners. Thus far the research has asked women with conditions such as AIS about their relationships and has not included their male partners. Developing an understanding of the male perspective could have important clinical applications for working with women with intersex conditions and their partners. I would like to point out, however, that I am not only interested in the problems that people may have encountered. It is also important to try to understand what makes relationships work or the way in which partners have overcome any difficulties.

What will we be asked to do?

Male participants

You will be asked to attend an interview to be conducted by myself. The interview will be about yourself, your relationship and will include questions of a sexual and non-sexual nature. No information from the interview will be discussed with your partner without your permission. I am aware that I will be asking you questions that you may feel are very personal and intimate. There may be some questions that you would prefer not to answer which is fine.

Female participants

You will be asked to provide some details about yourself, your condition and any surgical interventions that you have received. None of this information will be shared with your partner without your permission. I am aware that I will be asking you questions that you may feel are very personal and intimate. There may be some questions that you would prefer not to answer which is fine.

How long will the research take?

It is estimated that the interviews with male participants will take approximately 1 hour. Female participants will also be asked to spend approximately 15 minutes with me in order to gather the information outlined above.

Where will the research take place?

The research will take place within the Psychology Department, Hunter Street Health Centre, 8 Hunter Street, London WC1N 1BN.

Will the interviews be tape-recorded?

Yes. The purpose of this is to allow me to listen to your answers within the interview rather than having to write everything down whilst you are speaking. After the interview is conducted I also will type out our conversation, which will allow me to go over it and consider what you have said in more detail.

What will happen to the information?

Once the interview has been typed out the tape will be destroyed or returned to you if you so wish. You may also have a copy of the interview transcript if you wish. All audiotapes and written copies of the interview will be kept in a locked filing cabinet to which I have sole access.

Eventually it is hoped that the research will be published in an academic journal in order to raise awareness of the issues we have discussed and potentially develop services for people with conditions such as AIS and their partners. If the research is published, anonymised quotations from the interviews may be used. However, all information that might identify you will be changed or omitted.

What about confidentiality?

At the beginning of the research each couple will be assigned a code number. These code numbers will be used instead of your names on the tape recordings and the interview transcripts and on the information collected from the female participants. If the research is published, any information that might identify you will be removed or omitted. Finally, as mentioned above no information that you have shared with me will be discussed with your partner without your permission.

Will there be someone available if I feel the need to talk about some of the issues raised in the research?

Yes. The research includes a discussion of a number of potentially emotive issues. It is therefore possible that some of the participants may later want to talk to a trained psychologist or counsellor. All the participants will be given the opportunity to discuss any issues raised by the research. Any individuals or couples wishing to undertake further individual counselling will be referred to Dr. Lih-Mei Liao (Consultant Clinical Psychologist). Should you wish to pursue this option, you can contact me directly at the address given below and suitable arrangements can be made.

Will I be able to get information about the results of the research?

Yes. A summary of the research can be sent to you. Alternatively, I would be happy to feedback to you individually, as a couple or you may wish to attend a group meeting with the other research participants.

Please feel free to contact me at the following address should you have any other questions about the research or should you/ your partner wish to take part: Dr. Jackie Doyle, c/o Psychology Department, Hunter Street Health Centre, 8 Hunter Street, London WC1N 1BN. Tel: 020 7530 4300. Email: Drjdoyle@tesco.net.

THANK YOU for taking time to read the information about this study.

Dr. Jackie Doyle, Researcher in the Doctoral Degree in Clinical Psychology, University of East London, Romford Road, Stratford, London E15 4LZ.

Professor Mary Boyle, Head of Clinical Psychology, University of East London.

Dr. Lih-Mei Liao, Consultant Clinical Psychologist, Psychology Department Hunter Street Health Centre, 8 Hunter Street, London WC1N 1BN.

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