Background, aims and title of the study:

We are piloting a new scale, which measure siblings’ experiences of having a brother or sister with an eating disorder.  The aim of this study is to fill a gap in the research by creating the first known quantitative scale to capture the sibling experience. Much of the research to date has looked at the experience of parents/carers or the family unit as a whole rather than siblings individually.

Recruitment Process and what’s expected of participants:

We are currently recruiting siblings aged 11+ who have a brother or sister with an eating disorder (any sub-type) to take part in the survey. It is important to note, participants aged 11-15 will require parental consent to participate. Potential participants willing to participate should scan the QR code in the attached poster. They will first be asked to complete a pre-screening questionnaire, which will check eligibility. If they are eligible, they will be taken on to complete the survey. If they are not eligible, the questionnaire will end there for them. Participants will be put in a draw to win a £10 Amazon voucher after they have completed the survey. Any questions they may have can be asked to the following email: siblings-edresearch@kcl.ac.uk

Format:

An online, self-report questionnaire that should take between 20 to 30 minutes to complete. Participants can access the questionnaire by scanning the QR code on the poster advertisement.

Confidentiality:

All the data will be kept and stored in accordance with the Data Protection Act 2018 and GDPR regulations. Personal information obtained (such as email addresses, demographic characteristics) will be kept confidential. All data collected from surveys will remain anonymous. They will be stored on Qualtrics and then securely transferred to KCL Sharepoint which is password protected until the end of the project in September 2025. Only the research team will have access to the data. Once the participants agree to participate and sign a consent form, they will need to create their personalised code to ensure confidentiality and anonymity throughout the study. No names or email addresses will be kept. All identifiable information will be deleted after the completion of the study. The results of this study will be used anonymously for scientific paper publications and presented at conferences. Only the named researchers and principal investigators will have access to the participants’ identity. All participants will have up to one month to request their data to be removed from the study. Anonymised datasets may be available through the King’s Open Research Data System (KORDS) after the completion of the study where the data will be securely stored for 4 years. In the reporting of the project (future publication and/or conference presentation), no information will be released which will enable to reader to identify who the respondent was.

Ethics

This study has ethics approval from King’s College London.

Contact information for the researcher and supervisor: The following email is monitored by the research supervisors (co-supervisor – Anya Heneghan and main supervisor – Maria Livanou): siblings-edresearch@kcl.ac.uk