Ethical Clearance Reference Number: HR/DP-22/23-35093
Date: 05.03.23
Title of project
Exploring Autistic People’s Experiences of Self-Compassion: Stage One
Study team
Dr Julia Cook, Dr Debbie Spain, David Mason, Dr Hannah Belcher, Kevin Wong, Freya Bailey and Professor Francesca Happé all based at King’s College London
Invitation Paragraph
We would like to invite you to participate in this research project which forms part of our clinical research. Before you decide whether you want to take part, it is important for you to understand why the research is being done and what your participation 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.
What is the purpose of the project?
Self-compassion means being compassionate towards yourself. When faced with pain, failure or life difficulties some people may find it easier to be self-compassionate; others may find it more difficult. There is very little research examining self-compassion among autistic people.
The purpose of the first stage of the study is to better understand how to measure self-compassion in autistic people and links between self-compassion and mental well-being for autistic people.
Who can take part?
You can take part in the study if you reside in the UK, are over the age of 18, and identify as autistic (either because you self-identify or you have a formal clinical diagnosis).
What will happen if I take part?
This study has two stages. Stage One involves an online survey. Stage Two involves an optional online interview.
Stage One (online survey)
If you choose to take part in this first stage of the study you will complete an online survey that contains questions about you (e.g., “what is your age?”), self-compassion (e.g., “how often are you kind to yourself when you are suffering?”) mental health (e.g., “how often do worrying thoughts go through your mind?” and well-being (e.g., “how often have you been feeling confident?”). This survey will take about 20-30 minutes to complete.
Stage Two (online interviews)
You can find out more information about Stage Two here. Stage Two involves taking part in an 45-90 minute interview via Microsoft teams about your thoughts and experiences of compassion. At the end of this survey, you will again be provided with information about Stage Two and be asked if you would like to take part.
Do I have to take part?
It is completely up to you to decide whether or not to take part. You should only take part if you want to. Choosing not to take part will not disadvantage you in any way. Once you have read the information sheet, please contact us if you have any questions that will help you make a decision about taking part. If you decide to take part, we will ask you to complete an electronic consent form.
Incentives
If you complete the survey, you can enter the prize draw to win one of 5 x £50 online shopping vouchers. To enter the prize draw you will need to follow a link at the end of the survey and enter your email address. Your email address cannot be linked to your survey data. Please note suspected fraudulent entries will not be included in the prize draw.
What are the possible risks of taking part?
Some questions in the survey ask people about symptoms of anxiety and depression. Thinking about these questions could make some people have negative thoughts or feel distressed. You do not have to answer any of these questions if you do not feel comfortable.
If you feel distressed or in need of support, please contact:
Your GP
Shout
Shout is a free text-based mental health service available 24/7
Text: 85258
https://giveusashout.org/
The Samaritans UK
Phone: 116 123
Time: 24/7 365 days a year
www.samaritans.org
Mind
Mind's Infoline service provides an information and signposting service
Phone: 0300 123 3393
Email: info@mind.org.uk Text: 86463
Post: Mind Infoline, PO Box 75225, London, E15 9FS
Time: 9am to 6pm Monday-Friday (except for bank holidays)
Hub of Hope
The Hub of Hope website has a postcode search that you can use to find local services to you. https://hubofhope.co.uk/
There are also information services about autism available.
National Autistic Society
UK Phone: 0808 800 4104
https://www.autism.org.uk/
What are the possible benefits of taking part?
There are no immediate benefits to you from completing the survey.
Data handling and confidentiality
Your data will be processed under the terms of UK data protection law (including the UK General Data Protection Regulation (UK GDPR) and the Data Protection Act 2018). To ensure compliance with the UK data protection law, you will be given a unique participant number for anonymity.
Your data will be stored on secure KCL OneDrive and SharePoint. KCL OneDrive and SharePoint have an encrypted internet connection regardless of where the drive is accessed from. The data is also encrypted at rest, only accessible to KCL tenants. During the study only the research team will have access to your data.
Your anonymised survey responses will be held securely for 5 years after the end of the study on secure KCL OneDrive. If you consent, your anonymised survey data may be used by research team and/or researchers for future research studies of a similar nature (i.e., related to compassion, mental health and/or well-being). If you do not consent, only the research team will have access to the data.
We will keep email addresses separate from the survey data. If consent is given, we will retain email addresses for 2 years after the end of the study to recontact you about future research studies of a similar nature. If you do not consent to be recontacted, we will delete email addresses after incentives have been issued (August 2023) or the study report is sent to those requesting it (January 2024).
King’s College London has a responsibility to keep information collected about you safe and secure, and to ensure the integrity of research data. Specialist teams within King’s College London continually assess and ensure that data is held in the most appropriate and secure way.
Data Protection Statement
If you would like more information about how your data will be processed under the terms of UK data protection laws, please visit the link below:
What if I change my mind about taking part?
You can change your mind and decide to stop taking part in this stage of the study at any time by closing your internet browser. If you have not completed the survey, your answers will be deleted.
During the study you will be asked to create and enter a personal code into the online survey. If you change your mind after completing the survey (and you provide your personal code to us), you can ask for your data to removed until 2 weeks after completing the survey. If you do not provide us with your personal code, we will not be able to remove your data as your survey response will be anonymous and unidentifiable.
How is the project being funded?
This project is funded by Kings’ College London.
What will happen to the results of the project?
The results of the project will be summarised in a study report for participants, summary for the autism community, an academic research paper and at presentations (for example at a conference). You can opt-in to receive a copy of the study report at the end of the survey by providing your email. As mentioned above, your email address cannot be linked to your survey data.
Who should I contact for further information?
If you have any questions or require more information about this project, please contact us using the following contact details:
Dr Julia Cook
Social, Genetic and Developmental Psychiatry Centre
Institute of Psychiatry, Psychology, and Neuroscience
Kings College London Denmark Hill, SE5 8AF
Email: compassion@kcl.ac.uk
Dr Debbie Spain
Social, Genetic and Developmental Psychiatry Centre
Institute of Psychiatry, Psychology, and Neuroscience
King’s College London Denmark Hill, SE5 8AF
email: compassion@kcl.ac.uk
What if I have further questions, or if something goes wrong?
If this project has harmed you in any way or if you wish to make a complaint about the conduct of the project you can contact King's College London using the details below for further advice and information:
The Chair, Dr Samantha Schäfer, rec@kcl.ac.uk
Thank you for reading this information sheet and for considering taking part in this research.
If you would like a PDF copy of this information sheet please click here.
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