Researcher
Anne-Marie Martindale
Department of Health Services Research
Liverpool University

Invitation
You are being invited to take part in a PhD research project. Before you make a decision it is important for you to understand why the research is being done, to know what is involved and to decide whether you feel up to taking part.

What is the purpose of the study?
The study aims to understand how an acquired facial difference disrupts or impacts on an adult’s sense of identity and agency (ability to act free from social constraints).

Who are you looking to recruit?
Adults with an acquired facial difference, (which occurred at least two years ago), who will not be unduly upset by discussing their experiences.

Do I have to take part?
It is up to you whether to take part or not. If you do decide to take part and fit the criteria you will keep this information sheet and be asked to sign a consent form. You are still free to withdraw at any time and without giving a reason.

What will happen to me if I take part?
The researcher will contact you to arrange a convenient time and location for you and you will be asked to complete a consent form prior to the research interview taking place.You still have the opportunity to opt out, or to complete the research at a later date, without explanation. On the day the researcher (Anne-Marie), will want to spend between one to two and a half hours with you, to interview you, to find out about your life before you became facially different, your life during this period and about your life today. There are only a few interview questions, to allow you to explore your thoughts and experiences. If it helps you to explain something about your life or experiences, please feel free to bring photographs or possessions to the interview, though this is entirely optional.To maintain accuracy the researcher would like to record the interview with a small digital voice recorder, you can opt out of this. If you feel uncomfortable with the discussion you have the right to ask for a comfort break, and/or to opt out without explanation at any point. All findings will be anonymized and kept confidentially. You are welcome to have someone with you during the interview if it would help you.

What are the possible benefits of taking part?
We hope that you will enjoy the opportunity to share your thoughts and experiences.

Very little academic knowledge currently exists exploring how facially different people view their own faces, life chances or ability to act free from social constraint.

The information will be used to provide more insight into the lives of facially different adults, to increase knowledge and to reduce social ignorance in this area.

What are the possible side effects of the research?
This research will not be suitable for everyone.
It is possible that some people could feel upset due to the sensitive nature of some of the questions. You can choose not to answer them, have someone present with you or chose not to answer them. As part of the research pack you will be given supportive information written for and by people with a facial difference.This includes information taken from the organisation Changing Faces website, which contains details of their services, free counselling and regional groups. If you have a diagnosed mental health condition and are receiving treatment this research may not be beneficial for you right now, so I would ask that you do not put yourself forward.If you have a moderate to severe mental health illness, please do not put yourself forward. If you are in any doubt please contact your GP first and discuss your fitness to take part.

Will my taking part in this study be kept confidential?
All information which is collected about you during the course of the research will be anonymized and kept strictly confidential.

What will happen to the results of the research study?
The results will be written up into a thesis (report), which will be used to gain a PhD, or doctoral degree by research. The findings will be summarised and presented at both conferences and published in health, disability and social science journals, so that a range of professionals and researchers can learn more.

At the end of the study you will be provided with a short copy of the findings, if you would like one. You will not be identified or identifiable in any report or publication!

For further information please do contact
Melanie Brooks
melanie@mouthcancerfoundation.org
Researcher Anne-Marie Martindale Department of Health Services Research Liverpool University
ammartin@liverpool.ac.uk

This message has been edited. Last edited by: Melanieb,

Hi All

Perhaps you've had treatment for a head and/or neck cancer?

I'm still really interested in talking to adults with an acquired facial disfigurement. I'd like the results to help reduce social ignorance in this area.

If you are curious about the research and maybe want to tell your life story and answer some related questions-

please email me with any questions, thoughts...

It's all confidential.

best wishes

Anne-Marie

ammartin@liv.ac.uk

Link about the study: Study seeks people with facial disfigurements

This message has been edited. Last edited by: Dr Vinod K Joshi,