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Information Sheet for Study on Trauma and Dementia

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INFORMATION SHEET

A qualitative exploration of loved ones’ accounts of the trajectory of psychological distress in dementia for people who have experienced trauma
Thank you for your interest in the project. Please find below some more information about taking part. If you have any questions about the below or wish to arrange a brief phone or online Teams call to discuss more about the project, please contact the researcher on gnc21@bath.ac.uk.

Who am I and what is the study?
My name is Georgia Chambers and I am studying for my doctorate in Clinical Psychology at the University of Bath. As part of my doctorate, I am conducting this study into the links between dementia and trauma. I am doing this in collaboration with my supervisor, Dr. Ashley Vanstone, who is a Clinical Psychologist who works with people with dementia and their loved ones and carers.
We are interested in finding out more about how dementia symptoms develop over time for people who have experienced a traumatic event in their life.

Can I take part?
We are looking to speak to people who have, or have had, a loved one or family member who:
• Has or had a diagnosis of dementia
• Has or had experienced a traumatic event in their life (a stressful event or situation that was very threatening, or horrific)
• Has or had advanced dementia requiring 24 hour care
• They have or had known for at least 15 years with regular contact with them (at least 6 times per year)
We would also ask that you are comfortable sharing information about your perceptions of the timeline of the person’s dementia, and feel happy that they would be okay with you sharing this. We will not be asking for specifics, e.g., names, locations or exact details of traumatic experience.

What would I be asked to do?
If you wish to take part, you will be offered a pre-interview call to talk through what taking part might involve and to allow you to think this through. Following this, you will be sent a questionnaire to complete, asking some questions about your loved one’s dementia. This will also include a blank timeline for you to prepare for the interview if you think this would help. You will also be sent an interview schedule, so you know what will be asked in the interview beforehand if you wish to. The pre-interview questionnaire and timeline task should take no longer than around half an hour.
Following this, we will arrange a time that is convenient for you to be interviewed. This can take place in person, at your home, or at the University of Bath, if you live within 1.5 hours, or online over a Microsoft Teams video call if you live further away or would prefer this. The interview should take around an hour in total; you can decide whether you would like to do this in one or two parts. Although the interviews should take around an hour, you will not be stopped from speaking if you wish to continue sharing up to an hour and a half. This will involve me asking some questions about your perceptions of how your loved one’s dementia symptoms developed over time. You will not have to answer any questions that you do not want to and you will only need to disclose information that is comfortable for you, and that you think your loved one would be happy with you sharing. We can take a break during the interview if you would like to, and you have the right to end the interview at any point.
I will check at the end of the interview whether you are still happy for all the answers you have given to be included in the analysis and if there is anything you are not happy with being analysed, this will not be included in the transcripts. After completing the interview, you will a receive £20 voucher of your choice (that can be sent online) to thank you for taking part.

Do I have to take part?
You do not have to take part in this research. Taking part is voluntary, which means you can choose whether or not you want to. If you take part, you are allowed to stop the interview at any time without giving a reason why. If you stop the interview, your data will not be included in the analysis and any audio recording obtained up to that point will be deleted. If you wish to withdraw from the study once your interview has taken place, you will be required to contact us to request to withdraw your data. You will be able to remove your data within a week of taking part (after this point it will have been anonymised).

What would be the benefits or disadvantages of taking part?
Some people find it therapeutic to talk about their experiences and their loved ones. In addition, the research, and your participation in this, should advance knowledge in this area, which is currently limited. This may help healthcare providers to improve the support they offer to people with dementia who have experienced trauma. You may find that the interview causes you to be upset if this is a difficult topic for you. If you find the discussion difficult, you are able to take a break or stop the interview at any time. In addition, if the interviewer feels that the interview is causing you distress, the interview will be stopped. You will also be provided with a debrief sheet following the interview including details of any services which may be useful if you have found the interview to bring up anything distressing.

What will happen to the information I provide?
The interview will be recorded on Microsoft Teams, on a password-protected account. It will also be recorded on a Dictaphone for backup, which will be stored in a locked cabinet. This will be transcribed by the researcher within a month, removing any names or identifiable information mentioned, and then the recordings will be deleted. Transcripts, as well as your consent form and questionnaire will be scanned in and stored in a password-protected computer, on the secure university network. This will be accessed only by the researcher and the research supervisor. Your consent form with your name on and your other study documents will be stored separately so you cannot be identified.

What will happen to the results of this research?
What you tell me will inform our project on how dementia presents and develops for people who have experienced trauma. I may use extracts from what you have told me in my thesis, however these would not identify you or your loved one and any specific details that would be identifiable will be removed. The findings of the research may also be published in research journals or used in presentations. If you would like to be sent a summary of the findings, we can arrange for this.

What do I do if I would like to take part or have any more questions?
If you have any questions about taking part, you can contact me, Georgia Chambers, by emailing gnc21@bath.ac.uk. We can have a brief phone or online Teams call to discuss more about what taking part might be like. You are also able to view the interview questions and pre-interview questionnaire prior to the interview, if this helps you decide whether or not to take part. If you have decided you would like to take part, please email me and we can arrange a time that it convenient for you. You can also speak to the supervisor of the project, Dr. Ashley Vanstone, by emailing adv30@bath.ac.uk. If you have any concerns related to your participation in this study, please direct them to the Chair of the Department of Psychology Research Ethics Committee, by emailing psychology-ethics@bath.ac.uk

If you would like more information, or to take part, please provide your email address: