PrAPS

Prospective Acceptability of An Online Intervention To Support Parents Of Children And Young People With Eating Disorders and/or Self-Harm

Participant Information v020625

You are being invited to take part in a research project. Before you decide whether or not to take part, it is important for you to understand why the research is being undertaken and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Thank you for reading this.

1.  What is the purpose of this research project?
This project aims to evaluate the acceptability of new online interventions developed to meet the support needs of parents of children and young people who have eating disorders and/or self-harm. We have completed literature reviews that show that both self-harm and eating disorders in children/young people can be linked to significant worry and distress for parents. We aim to develop two resources- one for eating disorders and one for self-harm. We are not sure if there are features these might share. We need to design something that fits what parents need, want, and can actually access and use. This study aims to gain an understanding of what content, format and features are important and acceptable. The plan is this will then be used to help us design and then test support resources.

2. Why have I been invited to take part?
You have either followed a link in our adverts or being sent this information as you may be a parent, or in a parenting role, for a child or young person who has an eating disorder and/or self-harms. To be eligible to take part, it is important that your young person started experiencing their difficulties before they were 18 years old, and they have had some self-harm and/or eating disorder difficulties as recently as within the last year. You also must normally live in the UK.

3. Do I have to take part?
No, your participation in this research project is entirely voluntary, and it is up to you to decide whether or not to take part. If you decide to participate, we will ask you to indicate your consent on the next page of this questionnaire. If you decide not to take part, you do not have to explain your reasons, and it will not affect your legal rights – you can just close this webpage. You are free to withdraw your consent to participate in the research project at any time without giving a reason, even after signing the consent form – just close the webpage without completing the survey.

4. How can I withdraw from this project?
You can stop taking part at any time, without giving a reason. Just close the webpage. Once you have submitted your response, you will not be able to withdraw any data. This is because we do not collect any information from you that would allow us to identify your responses.

5. What will taking part involve?
You will not be given an intervention during this study. You will not receive full access to the online resource – these are still in development.
We will ask you some general questions about yourself and your view of using support as a parent. We will then show you a brief description of an outline of a new support resource for parents. You will then complete questionnaire to complete. about the concept of the online resource, its content and how it is delivered. There will be questions where you will rate your agreement with certain statements and open text boxes for you to write your responses in. As this resource is aimed at providing support and information to parents of CYP with eating disorders and/or self-harm, the materials may include content that some may find distressing. The whole process should take about 20 minutes to complete.

If you still have any questions about the study after reading this form, please email psmfm@bath.ac.uk. Please be aware that if you email, your email will be retained in Dr Martin’s email account until the end of the project.

6. Will I be paid for taking part?
You will be paid via Prolific. This is only the case if you complete the survey in full, and in relation to the various rules and agreements set out by Prolific.

7. What are the possible benefits of taking part?
There will be no direct advantages or benefits to you from taking part, but your contribution will help us understand the acceptability of a new online support resource for parents of CYP with eating disorders and/or self-harm.

8. What are the possible risks of taking part?
We do not anticipate any risks of participating in this research project. Our questions focus on your views of what might be useful for parents.

9. Will my taking part in this research project be kept confidential?
All information collected from (or about) you during the research project will be kept confidential, and any personal information you provide will be managed in accordance with data protection legislation. Please see ‘What will happen to my Personal Data?’ (below) for further information. If you withdraw part-way through the study, the information about you that has already been obtained may be kept by the University of Bath.

10. What will happen to my personal data?
We will not ask you for your name, address, or any other personal data. Your responses to the questions will be kept securely on the University’s X Drive.

11. What happens to the data at the end of the research project?
We will keep the anonymised data (without any email addresses) securely for 10 years with the University of Bath archives.

12. What will happen to the results of the research project?
We intend to publish this research project's results in academic journals and present findings at conferences. Participants will not be identified in any report, publication or presentation.

13. What if there is a problem?
If you wish to complain or have grounds for concern about any aspect of how you have been approached or treated during this research, please contact Dr Faith Martin (psmfm@bath.ac.uk ). If they cannot resolve your concern or you wish to make a complaint regarding the project, please contact the Research Governance and Compliance Team at research-ethics@bath.ac.uk. If you are harmed by taking part in this research project, there are no special compensation arrangements. If you are harmed due to someone's negligence, you may have grounds for legal action, but you may have to pay for it.

14. Who is organising and funding this research project?
This research project is being undertaken by Dr Faith Martin, a senior lecturer and researcher in the Department of Psychology, University of Bath. This project is funded by the Department of Psychology, University of Bath.

15. Who has reviewed this research project?
This project has been given a favourable ethics opinion by the University of Bath, Social Sciences Research Ethics Committee [reference: 10333-12742].

16. Further information and contact details
Should you have any questions relating to this research project, you may contact us during normal working hours: Dr Faith Martin (psmfm@bath.ac.uk).

17. Where to find support?
·       If you are distressed or worried about your child, please contact your GP or NHS 111.
·       In any emergencies, please call 999 or go to the nearest Accident and Emergency Department (A&E) if you feel in immediate danger.
·       https://www.papyrus-uk.org/hopelineuk/ offers online support and a phone line on 0800 068 41 41 to young people and their parents in relation to self-harm.
·      https://www.beateatingdisorders.org.uk/ is the UK’s Eating Disorder Charity Beat. They offer offers online and phone support, chatrooms and resources for eating disorders. Their helpline is free 3pm to 8pm, Monday to Friday and can be accessed here: https://www.beateatingdisorders.org.uk/get-information-and-support/get-help-for-myself/i-need-support-now/helplines/
·       https://youngminds.org.uk/find-help/for-parents/parents-helpline/ have a range of support options for parents. Their helpline is free on 0808 802 5544 from 9:30 am to 4 pm, Monday to Friday.
·       Or you can call the Samaritans any time of day or night on 116 123.

Thank you for considering taking part in this research project.

To download a copy of this sheet, please click here

Please click to advance to the consent form.

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