Impact of Demographic Factors on Quality of Life in Individuals Living Beyond Cancer
Participant Information Sheet
Thank you for your interest in taking part in this research from the University of the West of England, Bristol. Before you decided whether or not to take part, it is important for you to understand why the study is being conducted and what it will involve. Therefore, we invite you to please read the following information carefully and if you have any questions or would like more information please contact Saskia Kershaw, University of the West of England, Bristol. Saskia2.Kershaw@live.uwe.ac.uk
Who are the researchers?
My name is Saskia Kershaw and I am completing this research as part of my Professional Doctorate in Health Psychology. My research is supervised by Dr James Byron-Daniel and Dr Joe Walsh.
What is this research about? 
This research aims to explore and evaluate the effects of individual demographic factors and health inequalities such as levels of financial, educational and social resources (also known as socioeconomic status), race, ethnicity, gender, sex, geographical variation, and sexuality, on the quality of life of those living beyond cancer. This research also aims to investigate the impact of a combination of these factors (intersectionality) on the quality of life of those living beyond cancer.
To help investigate this I have created an online survey for you to complete. The information collected from this will be made anonymous.
What does participation involve?
If you agree to participate you will be invited to complete an anonymous online survey. This will take approximately 30 minutes and will involve a demographics or ‘about you’ section and a questionnaire of tick boxes. This questionnaire will ask you questions about your quality of life including questions about your physical, emotional, and social life.
You will need to answer a question consenting to take part in the research, to confirm your participation before beginning the survey. Following this you will be asked to create a unique identified code that will be used to re-identify your survey response if you chose to withdraw from the study. If not, your anonymised data will be analysed with the survey data from other anonymised participants. This data will then be deleted in line with the University of the West of England and GDPR policies of data protection.
Who can participate?
Anyone agreed between the ages of 18 and 99, who has been had any type of cancer and has been told they are cancer free or given the ‘all clear’ within the last 5 years (since 2018). Participants must have lived and received treatment in the United Kingdom (UK).
Those living with treatable but not curable cancers, living outside of the UK and did not receive cancer treatment in the UK are not able to participate.
 
What are the benefits of taking part?
If you agree to take part in this research you will be helping to provide a better understanding of the impact of demographic factors, health inequalities and intersectionality on the quality of life of those living beyond cancer. This may then be used to inform further research, identifying the unmet needs of different population groups and develop the understanding and impact of intersectionality within cancer care.
What are the risks of taking part?
We do not anticipate any significant risks to you in taking part in this study, however, if participating in this research causes you to feel uncomfortable or distressed at any time you can leave the survey website. If you need any support during or after the study, we have provided information below about some different resources which are available to you. These resources will also be listed at the end of the online survey.
Asian Women Cancer Gorup – is a group providing support for Asian women who have received a diagnosis of cancer. https://www.asianwomencancergroup.co.uk/
Black Women Rising – offers help, information and practical advice for people of colour who have been diagnosed with cancer: https://www.blackwomenrisinguk.org/
Blood Cancer UK – provides information and a forum for individuals affected by blood cancers to access https://bloodcancer.org.uk/
Brain Tumour Support – a charity providing support and information for anyone affected by any type of brain tumour: https://www.braintumoursupport.co.uk/
Breast Cancer Now – offering support to anyone affected by Breast cancer, speaking to nurses, joining support courses or meeting others who have been through similar situations: https://breastcancernow.org/information-support/support-you
Cancer Black Care ­– offers support and information to those living beyond cancer and their loved ones. http://www.cancerblackcare.org.uk
Fight Bladder cancer – offers support for anyone affected by bladder cancer, available through email (info@fightbladdercancer.co.uk.), forum ( https://www.fightbladdercancer.co.uk/ ), or phone (01844351621).
Lymphoma Action – a charity focused on helping to support individuals affected by lymphoma at any stage of their cancer journey. https://lymphoma-action.org.uk/
Macmillan – offers a wide range of support to anyone affected by cancer. This support covers physical, emotional, practical and financial support. https://www.macmillan.org.uk/
Maggie’s – offers support online and in centres across the UK through specialists, psychologists and benefit advisors. https://www.maggies.org
Mind – provides a way to find free or low cost counselling in your local area. To search you Local Mind service please see: https://www.mind.org.uk/information-support/local-minds/ 
MindLine Trans+ offers a confidential listening service for people who identify as trans or non-binary: 0300 330 5468 https://bristolmind.org.uk/help-and-support/mindline-transplus/

Outpatients – is a charity that is specifically focused on supporting and advocating for LGBTIQ+ people that are affected by cancer. https://outpatients.org.uk/
Pancreatic Cancer UK – offers support and information for those affected by pancreatic cancer https://www.pancreaticcancer.org.uk/information/
Penny Brohn UK – supports those affected by cancer by providing emotional, physical and spiritual support. https://pennybrohn.org.uk/
Prostate Cancer UK – offers support to everyone affected by prostate cancer through a variety of different means. They also offer the ability to join their online community, support groups or speak to a specialist nurse. https://prostatecanceruk.org/
Samaritans - is available to free call on 116 123 for 24/7 support.


Saroma UK – offers information and support to anyone affected by a sarcoma. https://sarcoma.org.uk/
Shine – offers support to people in their 20s, 30s and 40s with cancer specifically. https://shinecancersupport.org/
UK Cancer and Transition Service – offers support for trans and non-binary communities who are diagnosed with cancer diagnosis. https://www.wearetransplus.co.uk/uk-cancer-and-transition-service/
You can also speak to your GP or for some you may be able to contact you Clinical Nurse Specialist or Consultant that was involved in your cancer care.
How will the data be used?
All the data collected will be anonymised (i.e. any information that can identify you will be removed), kept confidentially and analysed as part of this research project. The demographic data for all participants will be compiled and analysed as part of the research as well as included in any publications of presentations arising from this research. Data relating to geographical location (postcodes) will be coded into a wider geographical area and labelled as “urban” or “rural” before being deleted. Protecting participant anonymity will be prioritised throughout the process of the project.
The study is administered via Qualtrics online survey platform and only I will have access to the data on Qualtrics. My supervisor will have access to a document with the anonymised responses and demographic data (external examiners may also request this). Once data collection is complete the data will be downloaded and deleted from Qualtrics and stored securely on the University of the West of England’s secure OneDrive; my supervisor will also have access to this. Any hard copies will be stored securely (e.g. in a locked filing cabinet).
The data will be held for a period of 6 years as is in line with the University of the West of England’s policy.
The personal information collected in this research will be managed and stored in accordance with the relevant data protection legislation and University policy (please see the GDPR privacy notice for more information).
What if I want to withdraw my data?
If you decide to take part in this research you are able to withdraw from the research without giving a reason until the point at which your data is anonymised and can therefore no longer be traced back to you. This will be 2 weeks from the date you provided consent. If you want to withdraw from the study within this period, please email Saskia2.Kershaw@live.uwe.ac.uk with your anonymous participant identification number (PIN) that are you asked to create at the beginning of the survey.
Where will the results of the research study be published?
I will write a report containing the findings of this research. This report will be available on the University of the West of England’s open-access research repository and will be submitted to academic journals. The anonymous results may also be used in conference papers and presentations.
If you wish a digital copy of the report can be made available to you, please email saskia2.kershaw@live.uwe.ac.uk if this is something that you would like. Key findings will also be shared both within and outside of the University of the West of England.
Who has ethically approved this research?
This project has been reviewed and approved by the Faculty Research Ethics Committee (Reference CHSS.24.03.162). Any comments, questions, or complaints about the ethical conduct of the study can be addressed to the Research Ethics Committee at the University of the West of England at: Researchethics@uwe.ac.uk
If you have any questions or do not understand something:
If you would like any further information about the research, please contact in the first instance:
Saskia Kershaw: saskia2.kershaw@live.uwe.ac.uk
Any concerns, queries or complaints directed to me will be communicated to Dr James Byron-Daniel (my Director of Studies). Further Action will be taken as required, which could include involvement from the Research Ethics Committee at the University of the West of England, Bristol.
If you would like to contact Dr James Byron-Daniel directly, his contact details are:
Dr James Byron-Daniels
Department of Health and Social Sciences
The University of the West of England, Frenchay Campus
Coldharbour Lane, Bristol BS16 1QY
Phone: 0117 328 1534
Email: James.Byron-Daniel@uwe.ac.uk

Thank you for your interest in taking part in this study.