Parents, carers and clinicians’ experiences of Family Based Treatment (FBT) for eating disorders with Autistic young people

Parents and carers participant information sheet

Version 2, 7th May 2024
*PLEASE TAKE A SCREENSHOT OF THIS SHEET OR SAVE A COPY FOR YOUR RECORDS*

You are being invited to take part in research on Family Based Treatment (FBT) for Autistic young people. The Eating Disorder and Behaviours Research Group of the University of Edinburgh is conducting this research to understand stakeholder experiences of FBT for Autistic young people to improve treatment options. Dr Fiona Duffy of the University of Edinburgh is leading this research project.

Before you decide whether to take part, it is important you understand why the research is being conducted and what it will involve. Please take time to read the following information carefully and decide whether or not you wish to take part in the study. Contact us using the information at the end of this section if there is anything that is not clear, or if you would like more information.

What is the purpose of this study?

FBT is the first line treatment for young people with Anorexia Nervosa and Bulimia Nervosa. There is a large proportion of young people with an eating disorder who are also Autistic. Though there has been more research into understanding the relationship between autism and eating disorders, there continues to be a need to improve and/or adapt treatment. To facilitate developments to treatment, it is important to understand the current experiences of FBT with Autistic young people and their families.

Why have I been invited to take part?

You have been invited to take part in this study, because you are a parent or carer of an Autistic young person who received FBT for Anorexia Nervosa or Bulimia Nervosa in the last 3 years.

Do I have to take part?
No – it is entirely up to you. You are free to choose to participate or not. If you decide to participate and then change your mind later, you can withdraw from the study before the 30th of September 2024 without any consequences or explanation. Deciding not to take part, or withdrawing from the study, will not affect your medical care or legal rights in any way.

If you are receiving treatment, your regular care or service will not be affected as a result of your decision not to participate or to withdraw from the study. The care or service your loved one is receiving will remain unaffected.
What will happen if I decide to take part?
If you do decide to take part, please keep this Information Sheet. You will be asked to complete an Informed Consent Form to show that you understand your rights in relation to the research, and that you are happy to participate. You will then be asked to provide your email address, and to complete a short demographic survey. You will be contacted by one of our research team Dr Fiona Duffy, Dr Emy Nimbley or Imogen Peebles to arrange an interview. Your email address will only be used for recruitment messages and to receive a document with helpful resources after the interview.

The interview will last between 30 and 60 mins. It will be hosted on Microsoft Teams, a free software, which can be downloaded on your computer or laptop, or accessed via a web browser, and allows you to create your own username. The interview will involve a video-call, which will recorded (both audio and video with your consent) for the purpose of transcription. During the interview, we will ask you questions about your experience of FBT, specifically within the context of your understanding of autism. Anonymised quotations from interviews will be used as part of the write up of the study.
What are possible benefits of taking part?

Possible benefits of your participation include discussing your treatment experience, learning about the research process, and helping to improve current and future health services. By sharing your experiences, you will be helping us to improve treatment for Autistic young people with eating disorders and their parents and carers.

You will not receive any form of compensation for taking part in this study.

Are there any risks associated with taking part?
Some of the interview questions are sensitive in nature and may cause some discomfort. It is important that you let us know, whenever you would like to end the interview or skip a question. You are not obliged to answer any of the questions we are asking you during the interview.

In addition to support from your GP, you can seek support for managing difficulties around eating via Beat, the UK eating disorder charity: www.beateatingdisorders.org.uk/.
What if I want to withdraw from the study?
If you no longer want to be part of the study, please inform us as soon as possible using the information at the end of this section. If you do wish to withdraw from the study, please contact the research team before the 30th of September and your data will be destroyed and will not be used in data analyses. Please note that your interview data will be pseudonymised after the completion of your interview so it will only be possible to withdraw your data if you provide the unique participant ID that we will give to you during the interview. Once we start the analysis, we will be unable to withdraw your data.

 We will give you the opportunity to provide feedback on your transcript. If you would like to receive a copy of your transcript to provide feedback, please indicate this on the consent form (there will be a box to initial on the consent form). You will have 72 hours from the point of the transcript being sent to provide feedback.

Data protection and confidentiality


Will my taking part be kept confidential?
All the Information we collect during the course of the research will be kept confidential and there are strict laws which safeguard your privacy at every stage.

How will we use information about you?
We will need to use information from you for this research project.
This information will include your:
  • Name
  • Contact details (email)
  • Age, gender and ethnicity
  • Your loved one’s age, gender and ethnicity

People will use this information to do the research or to make sure that the research is being done properly.

People who do not need to know who you are will not be able to see your name or contact details. Your data will have a unique participant ID instead.

We will keep all information about you safe and secure.

If you consent to being recorded, we will transcribe (write out in words) the interview and remove any identifying information at this stage. For example, if you mentioned the city where you live we will replace this with “[city]” in the transcript. Once we have completed the transcript, we will delete the recording. Microsoft teams will be used to generate a transcript. The transcript will be kept password protected on servers at the University of Edinburgh. Your personal data (name and email) will be held for a maximum of a year.

Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that you took part in the study.

What are your choices about how your information is used?
  • You can stop being part of the study if you inform us before the 30th of September 2024, without giving a reason, but we will keep information about you that we already have. 
  • We need to manage your records in specific ways for the research to be reliable. This means that we won’t be able to let you see or change the data we hold about you. However, you will have the opportunity to provide feedback on an anonymised transcript of your interview.

Where can you find out more about how your information is used?
You can find out more about how we use your information at https://www.ed.ac.uk/records-management/privacy-notice-research
  • At http://www.ed.ac.uk/records-management/privacy-notice-research
  • by asking one of the research team
  • by sending an email to the University of Edinburgh Data Protection Officer at dpo@ed.ac.uk

The University of Edinburgh is the sponsor for this study based in the United Kingdom. We will be using information from you in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. The University of Edinburgh will keep identifiable information about you for 1 year after the study has finishedand your anonymised data for a minimum of 5 years. Your identifiable information (name, contact details and demographics) will be kept for a year in case we need to contact you regarding the study. Your anonymised data may be used in future ethically approved research.
What will happen with the results of this study?
The results of this study may be summarised in academic articles, reports, and presentations. Your anonymised data may also be used by the research team and associated students in scholarly theses and dissertations.

If you would like to be informed of the study findings, you can request a summary of the results via email once the project is completed.

Who is organising and funding the research?
This study has been organised by Dr Fiona Duffy and sponsored by the University of Edinburgh.
Who has reviewed the study?
The University of Edinburgh’s School of Health in Social Science Research Ethics Committee has reviewed and provided a favourable opinion of this study.
Who can I contact?
If you have any further questions about the study, please contact Dr Fiona Duffy by email at Fiona.Duffy@ed.ac.uk.

If you wish to discuss this study with an independent contact please contact Dr Helen Sharpe, helen.sharpe@ed.ac.uk.

If you wish to make a complaint about the study, please contact: Research Governance Team (cahss.res.ethics@ed.ac.uk).