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The Experience of an Anorexic VoicE (EAVE) study: testing a novel questionnaire measuring the presence and significance of an anorexic voice in anorexia nervosa

Participant Information Sheet

Version 6.0, 05.02.2016

My name is Dr Kay Gant and I am a Trainee Clinical Psychologist studying for a doctorate in clinical psychology at the University of Manchester. As part of my training I am conducting this research project to develop a new questionnaire that will assess part of anorexia that I will refer to as the 'anorexic voice'. The anorexic voice is a critical inner dialogue that many people with anorexia have described as influencing their thoughts and behaviours around food and their weight. People with anorexia have also used other words to describe the anorexic voice, such as 'Ana' and 'anorexia twisted thoughts'. I would like to invite you to take part in this study. Throughout the study a research team will support me. Our team includes Dr Stephanie Tierney - Research Fellow, Dr John Fox - Consultant Clinical Psychologist, Dr Filippo Varese - Lecturer in Clinical Psychology and Professor Gillian Haddock - Professor of Clinical Psychology. Please read the following information about the study carefully and take the time to decide if you would like to take part. Please feel free to get in touch and ask me any questions you have about this study.

What is the purpose of the study?

It is thought that the anorexic voice may be a key part of anorexia and may explain why people can often struggle to recover from this eating disorder. For example, the anorexic voice may urge people to eat less, to exercise excessively, to make themselves sick or take laxatives, or make it difficult to tell others about their problems and get help. This study aims to test a questionnaire to help researchers and health professionals to explore the anorexic voice. This questionnaire is called the Experience of an Anorexic VoicE Questionnaire (EAVE-Q). People with a diagnosis of anorexia, aged 16 years or older, will be asked to fill in the questionnaire. We will explore whether the EAVE-Q can reliably measure people's experience of the anorexic voice. We will also assess if EAVE-Q scores are linked to eating disorder symptoms, mood and quality of life. It is hoped that the EAVE-Q can be used in future research to help us better understand and treat anorexia.

Why have I been invited to take part in this study?

You have been invited to take part in this study because you have identified yourself as someone who has a diagnosis of anorexia. In total, 150 people with a diagnosis of anorexia will take part in this study.

Do I have to take part?

You do not have to take part in this study if you do not want to. Taking part is completely voluntary; this means it is up to you to decide whether or not to get involved. Your decision to participate in this study will not affect any care you are receiving now or in the future.

What will participation involve?

If you decide to take part in this study you will be asked to complete some background questions about your experience of anorexia and a questionnaire about your current eating disorder symptoms. This is because we are looking for people with a very similar range of experiences. This will allow us to compare the findings of this research to those of previous studies in this area. If you are eligible for the study, you will then be asked to answer three more questionnaires: the new questionnaire (the EAVE-Q) and two others; a questionnaire about mood and a questionnaire about quality of life. We expect that it will take between 30 to 45 minutes to complete this study.

At the end of the questionnaires, you will be offered the opportunity to take part in an optional telephone interview to help us find out more about your experience of anorexia. This interview will last approximately 15 minutes and will be audio-recorded with your consent. Alternatively, you will be offered the option to leave your name, date of birth and the contact details for a health professional involved in your care, who we could also get this information from. Please remember that there is no obligation to agree to either of these requests to take part in this study.

You can take part online by clicking the link at the bottom of this page. Alternatively, you can take part via post or in person by contacting me, Dr Kay Gant, on Kay.Hampshire@manchester.postgrad.ac.uk. The data you provide will be used anonymously in the write-up of this study. All personal information will be destroyed after the study has ended. Anonymised data will be kept for a minimum of 5 years after the date of any publication of the results, to follow recommended good practice guidelines for research. Only the research team will have access to the data we collect.

Everyone who takes part will be asked if they would like to leave their details to be contacted about the next stage of the study. This is a follow-up stage, and you will be asked to fill in the same questionnaires twice more, 14 days apart. You will not have to complete all the background and screening questionnaires again. If you agree to being contacted about the follow-up stage of the study, you can still decide not to take part when we contact you about this.

What are the possible benefits of taking part?

There may be no direct benefits to you as a result of taking part in this study. However, as the main focus of this research is to explore the experience of an anorexic voice, an experience which is currently under-investigated and largely unrecognised in research and clinical practice, you may benefit from knowing that you are helping us to further understand a key component of anorexia. In addition, I hope that you will value the opportunity to answer questions about aspects of your experience of anorexia (the anorexic voice) which you may not have been asked about before, and that this gives you the chance to reflect on those experiences. Finally, you will have the option to leave your contact details at the end of the study to be entered into our free prize draw to have the chance to win £75 of Amazon vouchers. The draw will take place at the end of the study in June 2016, with one person winning the prize.

What are the possible disadvantages of taking part?

It is anticipated that there are no direct risks of taking part in this study. However, although it is unlikely, there is the possibility that you may find the content of the questionnaires upsetting. If this happens, you can stop the study any time. If you continue to feel distressed, you are advised to seek support (see the next section for some contact details you might find useful).

What if there is a problem?

It is unlikely that anything would go wrong during this study. However, if you do experience any distress as a result of taking part, please contact a health professional you know (your GP, CPN, psychologist, support worker etc), or get in touch with one of the services below:

  • B-eat: a national UK eating disorders charity. Telephone 0845 6341414 or email help@b-eat.co.uk. (Please note this is not a 24 hour helpline).
  • The Samaritans: a national charity offering support to people with any emotional difficulties. Telephone 08457 909090 (24 hour helpline) or email jo@samaritans.org.uk.
  • In an emergency: always contact 999 or go straight to your local accident and emergency department where you will be able to get support straight away.

Please contact the research team via me, Dr Kay Gant (Kay.Hampshire@postgrad.manchester.ac.uk), if you need any further help to complete the questionnaires or if you want to make a complaint about the study. Complaints will be resolved as quickly as possible and information will be provided by phone or in writing to inform you of how this has been addressed. If I am unable to resolve your concern and you remain unhappy, or if you do not want to contact me directly and you wish to make a complaint regarding the study, please contact a University Research Practice and Governance Co-ordinator on 0161 275 7583 / 0161 275 8093 or by email to research.complaints@manchester.ac.uk.

What will happen if I do not want to carry on with the study?

If you decide to take part and complete the consent form but change your mind later, you are free to withdraw at any point during the study without giving a reason and without any consequence to your current or future treatment. You will not be able to withdraw after you have completed the study as data will be saved anonymously. If you take part online, your data will be saved at the end of each page as you progress through the questionnaires. If you withdraw before you finish the online questionnaires your data saved to that point will still be used in the write up of the study, as this will also have been saved anonymously.

What will happen to the results of the study?

The results of this study will be written up and submitted as a thesis to the University of Manchester. It is expected that the results will be also published in a scientific journal once the study has finished. If you would like to receive a summary of the study results, you can leave us your details and we will send this out to you. A summarised copy of the results will also be sent to the NHS services and eating disorder organisations that have helped us with recruitment for this research.

Who has reviewed the study?

All research which involves NHS patients has to be reviewed by a National Health Service Research Ethics Committee. This study has been reviewed by the Greater Manchester West ethics committee (REC number: 15/NW/0501), and has also been reviewed by a board of researchers at the University of Manchester.

Who can I contact for further information?

If you have any questions you would like to ask me about this research, or what your participation will involve, please feel free to email me with your preferred contact details at Kay.Hampshire@postgrad.manchester.ac.uk and I will get back to you as soon as I can. If you decide that you would like to take part in this study, please click on the link below to participate online, or contact me if you would like to take part via post or in person.

Thank you for reading this information.

Please click here to start the study