I am no longer looking for participants and this information is here to explain more about the project.
If you have any questions that aren't answered here, please feel free to contact me.
Information for participants
What does the study involve?
Taking part in a face to face interview in a location you are comfortable with (your own home, or a quiet place nearby).
Bringing three photos to talk about your feelings about fertility and having a family.
How do I choose images?
The photos are there to get us started talking about the issues that matter to you. They will be of things that you can use to show your thoughts and feelings about having a family, Turner Syndrome and fertility, and the choices you have been faced with as a result. They do not have to be good quality, or personal, but are a way for us to begin a conversation. They can be kept private if you wish.
How long will it take?
It depends how the conversation goes. Interviews normally take between 60 and 90 minutes, but if you have more to say it could last longer. If your time is limited we can stick to a deadline.
Why is this research being done?
There is very little research about how women with Turner Syndrome make decisions about whether or not to have a family, what you think about the options that are open to you, and who else (if anyone) is involved in making that decision with you. There's even less about how it affects families as a whole. The aim is to publish the research so that there is a better understanding of the needs of people in that situation.
How will you keep my information and identity private?
Digital copies of the photos, audio recordings and typed up files (transcripts) will be kept on a password-protected computer. Printed transcripts will be kept in a locked filing cabinet. All the transcripts will be anonymised, so any information that could identify you (e.g. place names, clinics etc.) will be removed. Your data will be given a unique, anonymous code so your name will not appear on it. Data will be stored for five years and then deleted.