Participant Information Sheet (Survey) UCL Research Ethics Committee Approval ID Number: 22521/001 Title of Study: “Understanding the experience of accessing treatment for a long-term physical health condition when you have a diagnosis of personality disorder” Department: Division of Psychiatry Name and Contact Details of the Researcher(s): Katie Thompson, Katie.thompson.21@ucl.ac.uk, Sanjana Barot, Sanjana.barot.21@ucl.ac.uk Name and Contact Details of the Principal Researcher: Sarah Rowe, s.rowe@ucl.ac.uk - Invitation Paragraph
You are being invited to take part in a research project which is part of the Clinical Mental Health Science Masters at UCL. Before you decide whether to participate, it is important that you understand why the research is being done and what your participation will involve. Please take time to read the following information carefully and discuss any queries with the research team. - What is the project’s purpose?
Personality disorders are associated with a wide range of physical health conditions, and hospital admissions for non-mental health conditions are almost three times higher than the general population. Physical health has been said to be under-assessed and under-treated in patients with personality disorder compared to those with other serious mental illnesses. The aims of this project would be to explore the experience of accessing treatment for a long-term physical health condition when you have (or have had) diagnosis of personality disorder. - Why have I been chosen?
You are being invited to take part in this study because as you are 18 years or above, are living in the UK, have a long-term physical health condition, and have a current or past diagnosis of a personality disorder. We aim to recruit approximately 100 participants to complete our survey. - Do I have to take part?
Participation is entirely voluntary. It is up to you to decide whether to take part. If you change your mind about taking part, you can withdraw at any point during participation before submitting the online survey. If you decide to take part: - you will be asked for your consent in agreeing to take part
- you will have the option to keep a copy of this information sheet and the consent form
- you are still free to stop taking part at any time when completing the online survey and you do not have to give your reasons for doing so.
- What will happen to me if I take part?
If you choose to take part, you will be asked to give your consent to participate and complete an anonymous online survey consisting of open and close-ended questions. The online survey will take no more than 10-15 minutes and can be done at a time that is convenient to you. You will be asked about personal information such as age, gender, ethnicity and location within the UK. You will also be asked about your mental health, long-term physical health condition and your experiences of accessing treatment and support for this. We aim to make this survey as accessible as possible so you will have the option of stopping at any point and returning to complete the survey at your convenience. - What are the possible disadvantages and risks of taking part?
Topics discussed in this survey are of a sensitive nature and so could be distressing for some participants. If you feel distressed at any time during this study, you can save your answers and return at a later time to complete the survey. You can also withdraw from the study any time before submitting the survey, without giving a reason. After submitting the survey, it will not be possible to withdraw from the study as it is anonymised, so we would be unable to identify the responses of an individual who wishes to withdraw after they have completed the survey. Throughout the survey we will provide clear signposting to a list of organisations that offer support for mental and physical health difficulties. - What are the possible benefits of taking part?
Whilst there are no immediate benefits for those people participating in the study, it is hoped that this work will help improve understanding for and awareness of any challenges of accessing physical health treatments when you have a past or current diagnosis of personality disorder. This is an under-researched topic, and findings could inform clinical practice and help to improve support and access to healthcare for individuals with mental health diagnoses like personality disorders. Participants can also choose to enter a prize draw to win a £20 Amazon gift voucher, which will be randomly awarded to five participants - What if something goes wrong?
If you wish to submit a complaint or suggestion, please contact the research supervisor: Dr Sarah Rowe, at s.rowe@ucl.ac.uk If you feel your complaint has not been handled to your satisfaction you can further contact the Chair of the UCL Research Ethics Committee – ethics@ucl.ac.uk. - Will my taking part in this project be kept confidential?
All the information we collect about you during the course of the research will be kept strictly confidential. You will not be able to be identified in any ensuing reports or publications. Yes. Any personal data divulged such as email address (if you choose to enter the prize draw and/or receive a copy of the study findings) will be stored in an encrypted file and kept separately from the main study dataset. The main data collected will be anonymous. - What will happen to the results of the research project?
The results obtained from this study will be presented to the Division of Psychiatry at UCL. A blog about the project and results will also be written for charity organisations and/or The Mental Elf. The research will also be written up for publication in a peer reviewed journal. If you wish to obtain a copy of the results, they will be sent to you via the email address you provided (optional) during data collection. - Local Data Protection Privacy Notice
Notice: The controller for this project will be University College London (UCL). The UCL Data Protection Officer provides oversight of UCL activities involving the processing of personal data, and can be contacted at data-protection@ucl.ac.uk This ‘local’ privacy notice sets out the information that applies to this particular study. Further information on how UCL uses participant information can be found in our ‘general’ privacy notice: For participants in health and care research studies, click here The information that is required to be provided to participants under data protection legislation (GDPR and DPA 2018) is provided across both the ‘local’ and ‘general’ privacy notices. The categories of personal data used will be as follows: Name (optional) Age Gender Ethnicity Email address (optional) The lawful basis that will be used to process your personal data are: ‘Public task’ for personal data and’ Research purposes’ for special category data. Your personal data will be processed so long as it is required for the research project. If we are able to pseudonymise the personal data you provide we will undertake this, and will endeavour to minimise the processing of personal data wherever possible. If you are concerned about how your personal data is being processed, or if you would like to contact us about your rights, please contact UCL in the first instance at data-protection@ucl.ac.uk. - Who is organising and funding the research?
University College London (UCL) will be funding the research. 16. Contact for further information For any further information please feel free to contact: Katie Thompson (survey researcher) – katie.thompson.21@ucl.ac.uk Sarah Rowe (Principal Researcher) – s.rowe@ucl.ac.uk Thank you for reading this information sheet and for considering taking part in this research study. | 