Personal meaning of eating disorders

We would like to invite you to take part in a research study. Before you decide you need to understand why the research is being done and what it would involve for you. Please take time to read the following information carefully. Talk to others about the study if you wish.
Ask us if there is anything that is not clear or if you would like more information. Take time to decide whether or not you wish to take part.

What is the purpose of the study?

Eating disorders are among the most resistant of mental health problems, but little is known about why they are so difficult to treat. Some people have suggested that it is because certain aspects of eating disorders may be perceived as quite positive.

However, very little is known about the experiences of people with an eating disorder and as psychologists, we’d like to know more.

Why have I been invited?

We are asking people who are currently experiencing either anorexia nervosa or bulimia nervosa to take part in two short interviews to help us understand the different experiences that are important in the lives of people with eating disorders.

Do I have to take part?

It is up to you to decide. Read through this information sheet, and if you think you would like to talk to us, then you may ring us at the number at the bottom of this sheet to arrange a time to meet. When we meet, we will ask you to sign a consent form to show you have agreed to take part. You are free to withdraw at any time, without giving a reason. This would not affect the standard of care you receive.

What will happen to me if I take part?

We shall arrange a time to meet for two 90-minute interviews. The interviews will cover a whole range of topics that you’ll most likely be quite familiar with, and also some that you might not be. This includes questions about behaviour (such as eating or sleeping), and questions about thoughts (such as beliefs you may have about yourself). We are particularly interested in your attitudes towards eating disorders. We will record the interviews onto tape so that we can transcribe it into text – this will help us analyse the information.

What will I have to do?

If you would like to help us in our research and share your experiences of an eating disorder, then please contact us at the address, telephone number or e-mail at the end of this leaflet and leave your contact details. We will then contact you to arrange a suitable place to meet and conduct the interviews, and give you a chance to ask any questions you might have before you agree to take part. We regret that travel expenses cannot be paid.

We’ve included some useful help-lines and contact numbers at the end of this leaflet for anyone who may be feeling upset or distressed. Many of these are also useful if you’re having problems unrelated to our research. We cannot promise the study will help you but the information we get from this study will help improve the treatment of people with eating disorders.

What if I don’t want to carry on with the study?

You may withdraw from the study at any point during the interviews and for any reason. Once the interviews are complete, you may ask to have your data destroyed for up to 2 weeks after the last interview.

We keep a transcript of the interview for 5 years in locked cabinets at the School of Psychology in Birmingham University in case there should be any query over the data. All the data are confidential (we store the consent form separately from the interview data), and all quotes used from the study will be allocated to a pseudonym so that individuals will not be identified. Only the Chief Investigator and his University supervisor will have access to the data. After 5 years all data are destroyed.

What if there is a problem?

If you have a concern about any aspect of this study, you may ask to speak to the researchers who will do their best to answer your questions (0121 414 3417). If you remain unhappy and wish to complain formally, you can do this through the NHS Complaints Procedure (or Private Institution). Details can be obtained either from your hospital or at:
www.nhs.uk/Conditions/Complaints-about-NHS-services/

In the event that something does go wrong and you are harmed during the research and this is due to someone’s negligence then you may have grounds for a legal action for compensation but you may have to pay your legal costs. The normal National Health Service complaints mechanisms will still be available to you (if appropriate).

If you become upset during the course of this research study, and feel as though you need to speak to someone about it, we will provide you with the details of someone who will be willing to talk to you about your difficulties. You can contact us using the details below or let us know during the interview.

Analysis

A transcript of your interview will be typed up on a computer that is password protected, and your answers will be analysed and coded along with other people who have responded to our research. Different ‘themes’ that are common across the interviews will then be identified and these will be discussed in the report from the research. Quotes will be used to illustrate these themes, but they will be attributed to pseudonyms to protect confidentiality.

Who is organizing the research?

The report is part of a doctoral dissertation in Clinical Psychology at Birmingham University, and will be included in the thesis of the Chief Investigator. You may request a copy of any report resulting from the data collected for this study by contacting the Chief Investigator, whose details are at the end of this booklet.

Who has reviewed the study?

All research in the NHS is looked at by independent group of people, called a Research Ethics Committee to protect your safety, rights, wellbeing and dignity. This study has been reviewed and given favourable opinion by the Trent Research Ethics Committee.

Initial Points of Contact

Andrew P Fox
School of Psychology,
Frankland Building,
University of Birmingham,
Edgbaston,
Birmingham.
B15 2TT

Telephone: 0121 414 3417
e-mail: apf221@bham.ac.uk