STUDY TITLE: Eating disorder narrative study
INVESTIGATOR: Dr Emily Troscianko (University of Oxford)
CENTRE: The Research Centre in the Humanities (TORCH)
This is an invitation to participate in a research study. This study has been approved by the Central University Research Ethics Committee (CUREC) of the University of Oxford (ref. R73688/RE001).
Before you decide whether to take part, it is important that you understand the purpose of the study, what your participation will involve, how your personal information will be treated, and the possible benefits and risks associated with participation. Please take time to read this information sheet carefully, and be in touch with us via the email address above if you have any questions or concerns.
Why have I been invited to take part?
You have been invited because you have responded to our advert and because we believe you to be a female adult with or recovering from a restrictive eating disorder, with a body mass index of 15 or above and fluent in English.
Do I have to take part?
Your participation in this study is entirely voluntary. If you decide to participate, you can change your decision and exit the study at any point before you complete the study or up to 14 days afterwards, without any negative consequences for you, by contacting the researcher and requesting a withdrawal-of-consent form.
We thank you for your interest in taking part, but we would also like you to think carefully before you sign up for this study and complete the initial questionnaire. The study involves reading a book in its entirety and responding at intervals to questions, and this may take between 6 and 12 hours, depending on which book is assigned to you, your reading speed, and how much you write in response to the questions. Time (yours and ours) and money will be wasted if you complete the initial survey but then do not read the book, so we invite you to consider this before committing!
What is the aim of the study?
The aim of this study is to investigate how readers respond to an unpublished book manuscript exploring the process of recovery from anorexia nervosa, in order to assess its capacity to be helpful or harmful to people contemplating or engaged in recovery from a restrictive eating disorder.
What will happen in the study?
Half our participants will read the book manuscript and half will read a published book on a different theme, unrelated to eating disorders. Everything else about the study is the same for the two groups. 1 week before reading, you will be asked to complete 2 standardized, validated eating disorder-related questionnaires and to answer a further set of questions about yourself, your eating disorder, and your reading habits, as well as some simple open-ended questions. Then you will be invited to read the full text of the book you have been assigned over a period of around 2 weeks. At intervals during your reading you will be prompted to answer the same simple open-ended questions. Finally, you will be asked to complete the same 2 questionnaires and open-ended questions 2 weeks after completing the reading.
One of the questionnaires you will be asked to complete before and after reading is a measure of eating disorder symptoms applied to the past 28 days; the other relates to your motivation to change behaviours and attitudes related to your eating disorder. Whichever group you are assigned to, you are asked not to read other books about eating disorders during your participation in the study.
Please note that in order to grant you the necessary permissions for reading the book and answering questions about it, you will need to register for the study using a gmail address. If you don’t have a Google address and are willing to create one, you can set one up here: https://accounts.google.com/signup/v2/webcreateaccount?flowName=GlifWebSignIn&flowEntry=SignUp. If you don't have a gmail address and prefer not to set one up, we won’t be able to share the text with you, so unfortunately we will be unable to invite you to be involved in this study.
How will I be assigned to a study group?
You will be assigned to a study group at random. Neither you nor the investigators will decide on your group allocation; it will be done using random number sampling methods.
Are there any risks involved in taking part?
The study is designed to establish whether the book, if published, would be more likely to have positive, negative, neutral, or no effect on readers’ attitudes to their eating disorder and/or their readiness to recover, compared to reading books about other subjects. It is possible that reading the book and/or completing the questionnaires or answering the questions may cause you some distress or other difficulty. If this occurs, you are encouraged to contact any relevant support services (e.g. your therapist or counsellor, if you have one; your GP, medical practitioner, or an eating disorder charity helpline, if not) to discuss what you are experiencing and take action to mitigate any potential harm.
- If you’re in the UK, you can access the Beat helplines, web chat, chatrooms, and other support here: https://www.beateatingdisorders.org.uk/support-services
- If you’re in the USA, NEDA’s helpline, chat, and text services are here: https://www.nationaleatingdisorders.org
- In Australia, the Butterfly Foundation have a helpline, online chat, and other support options: https://butterfly.org.au
- In Canada, NEDIC’s helpline, chat, and email support is here: https://nedic.ca
You are also always welcome to contact the lead researcher Emily Troscianko at email@example.com.
Are there any benefits of taking part?
It is possible that reading the book and/or completing the questionnaires or answering the questions may give you a helpful new perspective on illness, recovery, and/or other aspects of your life. More widely, the aim of the study is to study the experiences and potential benefits and drawbacks, for people with eating disorders, of reading narratives about eating disorders. Your participation will therefore contribute to a better understanding of how eating disorders and reading interact, as well as informing publication decisions for this specific book.
Will I be reimbursed for my time?
All participants who complete the study can choose to be entered into a prize draw to win one of 4 £100 prizes at the end of the study.
Who is supporting this study?
This study is supported by The Research Centre in the Humanities (TORCH), at the University of Oxford.
What will happen to the data I provide?
All the information you provide will be kept confidential and will be used only for research purposes. All participants will be assigned a number, and the linking codes will be saved in a dedicated password-protected file. Electronic versions of the completed questionnaires and question responses will be stored securely in password-protected files on a password-protected and encrypted hard drive. Only the lead researcher and her research assistant will have access to the linking codes, and no individual participant will be identifiable in the resulting data files. Contact details including email addresses will be stored only as long as necessary for the completion of the study and, if you choose to request it, in order to share the study findings with you after analysis is complete, or to invite you to take part in related research in future. We will comply with the University of Oxford’s research data policy, which states that the minimum retention period for research data and records is 3 years after publication or public release of the work of the research.
The data and results from this study, including direct quotations, may be used in academic and other publications, and in presentations and reports at events or online. Aggregated data will be made publicly available via the Oxford Research Archive and/or as supplementary materials associated with journal publications. No publication, presentation, or open-science data provision involving the findings from this study will ever contain identifying information about you. We take all reasonable measures to protect your data, but confidentiality during internet procedures such as email cannot be guaranteed. Data may be stored on backups or server logs on the survey platform beyond the timeframe of this research project. Your data will be treated as confidential except in the unlikely event that we judge that you or someone else is at immediate risk of serious harm, or where information is requested by a court of law.
Whom can I contact to find out more?
Should you have any questions or concerns about the study, please contact:
Phone number: +44 (0)7786 065175
We will do our best to answer your query. We aim to respond to your concern within 10 working days and give you an indication of how we intend to deal with it. If you remain unhappy or wish to make a formal complaint, please contact the chair of the Research Ethics Committee at the University of Oxford, who will try to resolve the problem as quickly as possible:
Chair, Social Sciences and Humanities Inter-Divisional Research Ethics Committee; Email: firstname.lastname@example.org; Address: Research Services, University of Oxford, Wellington Square, Oxford OX1 2JD.
You can find a downloadable version of this information sheet here.