Study title: Alcohol and breast cancer: raising awareness and supporting women to reduce alcohol consumption.
Research team: Dr Emma Davies, Dr Jennifer Seddon, Lindsey Coombes, Cathy Liddiard, Fiona Matley, Professor Eila Watson
Contact: edavies@brookes.ac.uk
You are being invited to take part in a research study. Before you decide whether or not to take part, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully.
What is the purpose of the study?
Alcohol consumption is associated with increased risk of breast cancer, as well as having many other health impacts. Many people are not aware that there is a link between alcohol use and breast cancer. This study aims to increase knowledge about alcohol use and the risk of breast cancer and to support women to reduce their drinking.
We are aware that alcohol use and breast cancer can be difficult topics, and that it can take courage to share experiences relating to them. The research team includes women aged 40-65 who themselves drink alcohol and people with experience of breast cancer. Women’s drinking is a very under researched area, and we are inviting you to take part to help us to make positive changes and provide useful resources.
Why have I been invited to participate?
We are inviting women aged between 40 and 65, who currently reside in the UK to take part. We are interested in hearing your views if you currently drink alcohol or you used to drink alcohol in the past, but no longer do so. We are also inviting people who support women aged 40-65 to reduce their alcohol consumption. For example, people who represent alcohol charities, support organisations and community groups.
Do I have to take part?
No, giving your permission and taking part in the study is entirely voluntary. If you decide to take part, you will be asked to give your consent before starting the study. If you decide to take part you are still free to withdraw at any time without providing a reason. Any data collected from you can be withdrawn, up to the point of submission of the survey, or up to the point of analysis of the focus groups and workshop. This will begin one week after these sessions take place.
What will happen to me if I take part?
We are conducting a three part process called a Delphi study. A Delphi study simply means an exercise to help us prioritise people’s views. You do not have to take part in all three stages of the study. The stages are outlined below. If you wish, you can simply take part in the questionnaire in stage 1.
Initially, you will be sent a questionnaire to complete. In the questionnaire we will ask for some information about you, your alcohol consumption and your views about alcohol. You will also be asked for your views about how we should design a campaign to raise awareness of the link between alcohol use and breast cancer and how we can help people to reduce their use of alcohol if they wish to do so.
Following completion of the questionnaire, we would like to invite you to the other rounds of the Delphi study. At the end of the first questionnaire, you will have the option of entering an email address should you wish to be invited to take part in later parts of the study. Your email address will not be stored alongside your data and we will not be able to link your email address with the answers you’ve provided.
The second part will take the format of a focus group. If you enter your email address we will send you an invitation to the focus group, and then you can decide whether or not to take part at that point. People who represent alcohol charities, support organisations and community groups will be invited to join the study at this stage.
We will be conducting these focus groups remotely using Zoom. Before this focus group we will send you a summary of the findings from the questionnaire which will be a summary of how participants rated the ideas that were presented. During the focus group we will ask you to reflect on this summary and then provide further information on your opinions. You do not have to answer any questions you do not want to and you can leave the focus group at any time. The focus group is likely to last between 45-60 minutes and we will provide a £30 voucher as a gesture of thanks for your kind participation.
Lastly, for those who still wish to contribute further, we will be inviting a final group of participants to the third stage of the study. This will consist of an online workshop with around 10 other women who have taken part in the study. In this workshop you will be presented with the findings of stage 1 and 2. Then we will have a discussion about how to design our campaign to raise awareness of the link between alcohol use and breast cancer. Then we will have a discussion on how we can help women who want to reduce their alcohol consumption. At the end of the workshop we will have a list of agreed priorities for both of these things. Attending and preparing for the workshop will likely take about half a day in total and we will provide you with £75 in vouchers to compensate your time
Are there any risks involved?
Some people may find the topics of alcohol and breast cancer to be sensitive. Please take the time to consider if you would like to take part.
It is possible that once you have taken part in this study you might have questions or want information about your own or someone else’s drinking. If this is the case, you can find further information and links to further sources of support at https://www.nhs.uk/live-well/alcohol-support/
You might also want to know further information about cancer and support that is available. You can find further information and links to sources of support at https://www.nhs.uk/conditions/breast-cancer/
What are the possible benefits of taking part?
There are no individual benefits to you, but if you choose to take part in this online study then you will be helping us to understand how we should communicate the link between alcohol and breast cancer, and how to help women to reduce their alcohol consumption if they chose to do so.
Will what I say in this study be kept confidential?
Yes. The survey results will be anonymous. You will not be asked to give any information that could be used to identify you personally (e.g., your name, date of birth).
If you participate in the focus groups or workshop then your contributions will be heard by the other people in those sessions. We will ask that you do not share anything that is discussed outside of those sessions. We will record the focus groups and workshops so we can analyse the data afterwards. Once we have transcribed the sessions the recordings will be deleted and any identifying details will be replaced in the transcripts. No identifying information will be included in any of the written work resulting from the study.
You can see a privacy notice about the storage of any personal data here
https://sites.google.com/brookes.ac.uk/pbc-alcohol/privacy-notice
What will happen to the results of the research study?
The results of this study will be presented at an online event in January 2024 and summarised in blogs and media articles. They will also be written up for publication in an academic journal and presented at a conference.
We will also put an anonymised data set in a repository, such as the Open Science Framework, to assist with future research on this topic.
All the data collected from this research will be kept in keeping with the University’s policy of Academic Integrity. This means that all data will be securely stored in paper or electronic form for a period of 10 years when the project is finished.
In addition, you will be able to see a summary of the research findings online once the data from the study has been analysed. This will be available on the following website at the end of February 2024.
https://sites.google.com/brookes.ac.uk/pbc-alcohol/home
Who is funding the research?
The project has been funded by a charity called Prevent Breast Cancer.
Ethical Approval
This study has been approved by Oxford Brookes University’s Cross Faculty Research Ethics Committee (reference number: 191269). If you have any concerns about the way in which the study has been conducted, you may contact the Chair of the Oxford Brookes University Research Ethics Committee on ethics@brookes.ac.uk
What should I do if I want to take part?
If you have read this information and would like to be involved then please provide your consent on the survey link here
Who can I contact if I have any questions?
Please ask the lead researcher, Dr Emma Davies if you have any questions or you want further information about this study. My contact details are at the top of this page.
Thank you very much for taking the time to read this information sheet
Dr Emma Davies
May 2023