Do you know how I feel?

We are looking for participants to help us with a research project exploring awareness of our body (sensations such as hunger, thirst, changes in body temperature, nausea, heart rate, etc.). We think that this awareness, also called interoception, is an important factor in our day to day lives, and research suggests that it may also be involved in the development of some mental health conditions.

To measure interoception, we sometimes ask people to fill out questionnaires related to their perception of sensations within their body. However, completing questionnaires can be difficult for some people, either because of age (e.g. young children) or because they have learning difficulties. The aim of this study is to test the suitability of two questionnaires that can be used to measure interoceptive abilities in situations where children are unable to report on their abilities themselves. These questionnaires will be given to caregivers to complete on behalf of the person they are caring for. We hope the results from our study will help us to develop new ways of measuring interoceptive difficulties in vulnerable people in a more reliable way.

What will I be asked to do?
You will first be asked to complete two questionnaires about the adolescent you are caring for. These can be completed online or in person. The questionnaires will cover questions about how accurate they are at feeling sensations within their body, as well as how aware they are of these sensations. You will also be asked to complete similar questionnaires, but about yourself. Finally, you will also be asked a few short demographic questions about the adolescent, including their age, sex, first language and whether they have a diagnosis of any physical, developmental or mental health condition. As part of the experiment, we will also be asking the adolescent you care for to complete two questionnaires about themselves, provided they have also agreed to take part in the study.

Will my information be safe?
All scores will be recorded using an anonymous identifying number only. All data will be kept in a secure, password protected folder. The results may be published later in an academic journal or disseminated at academic conferences. However, this will only include information of the overall results, rather than individual results, and there is no risk that you could be identified by name. You will be allowed to withdraw from the study at any point if you wish, even after you have given your consent. More detailed information about withdrawing from the study can be found in the debrief sheet at the end of the experiment. If you would like to withdraw before the end, please contact a member of the research team using the details at the bottom of this page. If you do not decide to withdraw, your personal data (such as your consent form or contact information) will be stored for a maximum of five years, at which point it will be deleted. Data which is not linked to your personal information (such as scores on questionnaires) will be indefinitely stored online on the Open Science Framework.

What are the risks of taking part?
There are no risks associated with taking part in the study. However, as some of the questions involve issues related to body awareness, we have included our contact details at the end of the study in case you have any concerns or questions about this.

What are the benefits of taking part?
There are no direct benefits to taking part in the study. However, you will be contributing to research that helps us understand more about interoception and development, which we hope will lead to a better understanding of how to prevent and treat mental health problems later in life.

Researchers involved:

Melissa Barker: Royal Holloway, University of London (Melissa.Barker.2018@live.rhul.ac.uk)

Dr Rebecca Brewer (Principal Investigator): Royal Holloway, University of London (Rebecca.Brewer@rhul.ac.uk)

Dr Jenny Murphy (Principal Investigator): Royal Holloway, University of London (Jennifer.murphy@rhul.ac.uk)

DATA PROTECTION, FUNDING AND ETHICAL CLEARANCE

Royal Holloway, University of London is the sponsor for this study and is based in the UK. 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. Any data you provide during the completion of the study will be stored securely on local servers. Royal Holloway is designated as a public authority and in accordance with the Royal Holloway and Bedford New College Act 1985 and the Statutes which govern the College, we conduct research for the public benefit and in the public interest. Royal Holloway has put in place appropriate technical and organisational security measures to prevent your personal data from being accidentally lost, used or accessed in any unauthorised way or altered or disclosed. Royal Holloway has also put in place procedures to deal with any suspected personal data security breach and will notify you and any applicable regulator of a suspected breach where legally required to do so. To safeguard your rights, we will use the minimum personally-identifiable information possible (i.e., the email address you provide us). The lead researcher will keep your contact details confidential and will use this information only as required (i.e., to provide a summary of the study results if requested and/or for the prize draw). The lead researcher will keep information about you and data gathered from the study for 5 years after the study has finished. Certain individuals from RHUL may look at your research records to check the accuracy of the research study. If the study is published in a relevant peer-reviewed journal, the anonymised data may be made available to third parties. The people who analyse the information will not be able to identify you. You can find out more about your rights under the GDPR and Data Protection Act 2018 by visiting https://www.royalholloway.ac.uk/about-us/more/governance-and-strategy/data-protection/ and if you wish to exercise your rights, please contact dataprotection@royalholloway.ac.uk. Please complete the consent form so that we know whether you agree to take part in this study.

This project is funded by the South East Network for Social Sciences (SeNSS). This study has been reviewed and approved by the College Ethics Committee at Royal Holloway, University of London. The members of the research team have been checked and cleared by the Disclosure and Barring Service (DBS). If you are unhappy or have concerns about any aspect of the project, and do not wish to contact the research team, you can contact the Research Ethics Committee via email at ethics@rhul.ac.uk, or by phone at 01784 414930. The committee is entirely independent of the research and will respond to your concerns.