Help Our Research
PARTICIPANT INFORMATION SHEET
Study title: Understanding the link between autistic traits and eating behaviours in different situations
Central University Research Ethics Committee Reference: MS IDREC 719535
- Introductory paragraph
You are being invited to take part in a research project. Before you decide whether to take part it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully and discuss it with others 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 you wish to take part.
- Why is this research being conducted?
There is a known association between autism and eating disorders, such that autistic people may be more likely to develop an eating disorder. However, little is known about why this association is observed or whether there are certain factors which make autistic people more vulnerable to developing an eating disorder. The purpose of this study is to investigate the relationship between autism and eating behaviours. We aim to better understand how thinking, eating and other habits may be influenced by different situations in people with and without an autism diagnosis.
- Why have I been invited to take part?
We are recruiting autistic participants and non-autistic controls to take part in this research. To take part, participants must meet the following criteria:
- Be aged 18 years or older
- Be fluent in English
- Not currently experiencing an eating disorder (ED) or Avoidant/Restrictive Food Intake Disorder (ARFID)
- Able to provide informed consent to participate
- Do I have to take part?
No. It is up to you to decide whether to take part. You can withdraw yourself from the research, without giving a reason by advising the lead researcher of this decision.
The deadline by which you can withdraw any information you have contributed to the research is before the final questionnaire. After this time, all data will be anonymised, so withdrawal of your data will not be possible. Prior to the final questionnaire you will be given more information about the study and will have the opportunity to withdraw if you wish to.
- What will happen to me if I take part in the research?
The following information gives an outline of what will happen if you take part in this research. If you agree to participate, you will be required to:
- Fill in a screening questionnaire: We will assess your eligibility through a brief online questionnaire. If you are eligible, the lead researcher will be in touch to arrange a date and time for testing. Note: you may have already completed this part of testing.
- Read this information sheet and sign the consent form: You will be required to sign the associated consent form and/or give verbal consent prior to taking part.
- Complete pre-study questionnaires on the day of testing: If eligible, you will be asked to fill out several short surveys at different points on the day of testing which ask about things like your mood, height/weight, beliefs about yourself, and thoughts about food and eating behaviour.
- Attend a 90-minute in-person session: On the pre-agreed day of testing, you will be asked to come in to the Department of Experimental Psychology for testing, which will take approximately 90 minutes. During this time you will be asked to complete a range of tasks which some people may find mildly stressful. This task is designed to help us understand how people respond differently to strange situations. Participants can ask to pause or stop the research activities at any time, unless otherwise stated.
With your consent, we would also like to video record parts of this call to allow us to interpret your answers to one of the tasks.
- What are the possible disadvantages and risks in taking part?
Potential Risks:
• Mild discomfort or stress arising from testing
Potential disadvantages:
- Participation requires time and effort.
- Are there any benefits in taking part?
While there are no immediate benefits for those people participating in the research, it is hoped that this research will contribute to informing future understanding of and interventions for people experiencing (or at risk of developing) an eating disorder.
There will be no payment for taking part in this research.
- What information will be collected and why is the collection of this information relevant for achieving the research objectives?
Identifying information: The following identifying information will be collected at screening and kept securely in a password-protected Logbook with an associated participant number. The only people with access to this data will be the lead researcher and the Principal Investigator. This data will be deleted once you have completed the final questionnaire, or earlier upon your request:
- Your first and last name.
- Your email address (for arranging times for testing).
Further information: The following further information will also be collected and stored securely in a separate location to your identifying information. Your data will be identifiable only through your participant identification number. This information will help us establish that you meet the criteria for participation, determine which group you fit into, and allow us to determine to what extent our sample is balanced and representative.
- Whether you do or do not have a diagnosis of autism (self-reported). There is no need for you to provide evidence of this diagnosis.
- Your score on the Autism Quotient (AQ). This will be used to validate your diagnosis.
- Your score on the Eating Disorder Examination Questionnaire (EDE-Q). This will be used to rule out an eating disorder.
- Your score on the Nine Item ARFID Scale (NIAS). This will be used to rule out Avoidant/Restrictive Food Intake Disorder (ARFID).
- Your gender.
- Your age.
- Your BMI; calculated by asking for your estimated height and weight.
Further data will also be collected throughout the course of the study relating to your mood, self-esteem, desire to eat, anxiety, endorsement of eating-disorder related behaviours, and endorsement of beliefs related to weight and shape.
Identifiable data (e.g. your name and email address) will be stored on the University of Oxford’s secure OneDrive in a password-protected folder. This will be deleted within 24 hours of completion of the study, or earlier upon request.
Anonymised research data and consent forms will be stored for 3 years in line with university regulations, after which time they will be destroyed.
- Will the research be published? Could I be identified from any publications or other research outputs?
The findings from the research will be written up as part of the lead researcher’s thesis, and may be further submitted for publication in a journal and/or presented at a conference. Participants will not be identifiable from the written data.
A copy of my thesis/ dissertation will be deposited online in the Oxford University Research Archive where it will be publicly available to facilitate its use in future research.
Data Protection
The University of Oxford is the data controller with respect to your personal data, and as such will determine how your personal data is used in the research. The University will process your personal data for the purpose of the research outlined above. Research is a task that is performed in the public interest. Further information about your rights with respect to your personal data is available from the University’s Information Compliance website at https://compliance.admin.ox.ac.uk/individual-rights.
- Who has reviewed this research?
This research has received favourable opinion from a subcommittee of the University of Oxford Central University Research Ethics Committee. (Ethics reference: xxxxx).
- Who do I contact if I have a concern about the research or I wish to complain?
If you have a concern about any aspect of this research, please contact Daisy Burden (daisy.burden@stx.ox.ac.uk) or Myra Cooper (myra.cooper@psy.ox.ac.uk) and we will do our best to answer your query. We will acknowledge your concern within 10 working days and give you an indication of how it will be dealt with. If you remain unhappy or wish to make a formal complaint, please contact the Department of Experimental Psychology on 01865 271444, or the University of Oxford Research Governance, Ethics & Assurance (RGEA) team at rgea.complaints@admin.ox.ac.uk.
- Further Information and Contact Details
If you would like to discuss the research with someone beforehand (or if you have questions afterwards), please contact:
Daisy Burden, Department of Experimental Psychology
University email: daisy.burden@stx.ox.ac.uk
Moral Injury Experiences in Frontline Healthcare Environments
CUREC Approval Reference: R92873/RE001
Can you help us to better understand the occurrence and impacts of Moral Injury in healthcare environments?
We are a team of researchers at the University of Oxford who are interested in better understanding the occurrence of Moral Injury in frontline healthcare environments. We are hoping to develop a deeper understanding of the types of trauma experiences that may contribute to identifications of Moral Injury, with the aim of improving our knowledge of the psychological trauma suffered in individuals providing primary health care.
If you feel you can help us, or you know someone who might be interested in supporting our research, please read our participant information sheet (see document below), and the poster (see document below). Both of which can also be distributed to anyone who may wish to take part.
The study involves filling out a number of questionnaires online followed by a 30 minute to one-hour interview with the primary researcher, Patrick Johnson.
If you have any questions or would like to participate, please email us on patrick.johnson@stx.ox.ac.uk
If you would like some further information, please look at the participant information sheet below.
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Can you help us to understand clinicians’ perspectives of CBT treatment for anxiety?
(Central University Research Ethics Committee (CUREC) Approval Reference: R93179/RE001)
We are a team of researchers at the University of Oxford who are interested in better understanding clinicians’ perspectives of CBT treatment for anxiety. We are interested in hearing from people who provide CBT treatment for anxiety to adults. For this study, we are hoping to develop a deeper understanding of clinician factors that may contribute to outcomes of anxiety treatment with the hope of improving psychological treatments for individuals.
If you feel you can help us, or if you know someone who might be interested in supporting our research, please read the participant information sheet (below), and the poster (below) can also be distributed to anyone who may wish to take part.
The study involves completing a short task online which includes watching a short video and filling in an online questionnaire. It will take approximately 20-30 minutes to complete. You can start the study by clicking on this link: https://psychiatryoxford.qualtrics.com/jfe/form/SV_8Jp0HBmbSXP2JRs
If you have any questions or would like to participate, please email Nicola Roche at nicola.roche@psy.ox.ac.uk.
