Page 1: Study information and your consent to participation

*Please read the below information before agreeing and consenting to participate at the bottom of the page.*

Adult Participant Information Sheet 

Investigator Details:

Felicity Slocombe

Supervised by Prof. Elizabeth (Liz) Peel

School of Social Sciences and Humanities, Loughborough University, Leicestershire, LE11 3TU, UK     

Tel: 01509 228176; Email: f.slocombe@lboro.ac.uk    e.peel@lboro.ac.uk  

We would like to invite you to take part in our study. Before you decide we would like you to understand why the research is being done and what it would involve for you. Detailed below is the information sheet. Please contact Felicity (f.slocombe@lboro.ac.uk) if you have any questions about the survey.

What is the purpose of the study? The purpose of the study is to explore perceptions of media coverage of dementia, how it makes you feel and what you believe the implications of these media messages could be for how dementia is viewed.

Who is doing this research and why? This study is part of a PhD student (Felicity Slocombe) research project supported by Loughborough University. Elizabeth Peel is the responsible investigator for the project and supervises Felicity. Felicity is your first point of contact for any questions relating to your participation.

Are there any exclusion criteria? You must be aged 18 or over to take part.

What will I be asked to do? You will be asked for your age, gender, geographical area, ethnicity, sexual identity, religion, education level, occupation, income and relationship to dementia. You will also be asked questions relating to knowledge of dementia and media coverage of dementia, we are looking for your opinions and beliefs. For all questions there is the option to select 'prefer not to answer'.

Once I take part, can I change my mind? Yes. If you wish to withdraw from the study, please contact Felicity (f.slocombe@lboro.ac.uk).

To withdraw, you will need to take note of your Survey ID which will be given at the end of the survey. You will be able to withdraw your data any time up until 24th August 2022. You can withdraw for any reason, and you will not be asked to explain your reasons for withdrawing.

How long will it take? The survey will take approximately 25 minutes.

Are there any disadvantages or risks in participating? The survey will discuss aspects of dementia which may be upsetting. If participants have any concerns during or after the study, they should contact the main investigator and/or the other investigators. There is a list of support organisations on Felicity’s website: https://www.felicityslocombe.com/support. This webpage is also included at the end of the survey, should you wish to use it.

Are there any advantages or opportunities in participating? At the end of the survey, we will ask if you would like to be contacted to participate in a focus group which will explore some of the subjects in the survey in more detail as well as some new ones (more details at the end of the survey).

Data Protection Privacy Notice Loughborough University will be using information/data from you in order to undertake this study and will act as the data controller for this study. This means that the University is responsible for looking after your information and using it properly. Loughborough University will keep identifiable information about you for 10 years after the study has finished until the end of 2032. The University’s Data Protection Officer can be contacted at: dp@lboro.ac.uk.

What personal information will be collected from me? We will ask for your age, gender, ethnicity, geographical region, education level, whether you are religious/non-religious, sexual orientation, annual income, occupation and your personal relationship to dementia (ranging from no personal experience up to having a dementia diagnosis yourself). We will ask if you are happy to be contacted with the results from the survey. If you would like this, we will ask you to provide a contact email address. This email address will be deleted once the results have been sent to you.

Why is this personal information being collected? This personal information is being collected for use in the analysis of the survey responses. This gives Felicity an idea of who has filled the survey in and how diverse the participants are.

How long will my personal data be retained? For 10 years, in accordance with university data protection policies.

Will my taking part in this study be kept confidential? Yes. Before being used in any research output, data will be anonymised by removing any identifying information such as names, employees or locations of individuals. All records will be stored on an encrypted external hard drive that only Felicity Slocombe has access to. 

How will the data collected from me be used? The data will be analysed and used for the purposes of Felicity Slocombe's research and publication.

What is the legal basis for processing the data? Personal data will be processed on the public task basis. Individuals’ rights to erasure and data portability do not apply if you are processing on the basis of public task. However, individuals do have a right to object. 

Under the General Data Protection Regulation (GDPR), some of the personal data which will be collected from you is categorised as “sensitive data”. The processing of this data is necessary for scientific research in accordance with safeguards. This means the study has gone through an ethical committee to ensure that the appropriate safeguards are put in place with respect to the use of your personal data.

Will my data be shared with others? Your private, identifiable data will not be shared. Anonymised data will be shared for the purposes of research and publication.

How long will the anonymised data/samples be retained? Anonymised data and samples submitted for research will be retained for 10 years, in accordance with university data protection policies.

I have some more questions; who should I contact? Please contact Felicity Slocombe using the details above if you have any further questions.

If you have any questions more generally regarding Data Protection at the University, then please do contact the Data Protection Officer on dp@lboro.ac.uk or write to The Data Protection Officer at Academic Registry, Loughborough University, Loughborough, Leics, UK, LE11 3TU.

What if I am not happy with how the research was conducted? If you are not happy with how the research was conducted, please contact the Secretary of the Ethics Approvals (Human Participants) Sub-Committee, Research Office, Hazlerigg Building, Loughborough University, Epinal Way, Loughborough, LE11 3TU.  Tel: 01509 222423.  Email: researchpolicy@lboro.ac.uk

The University also has policies relating to Research Misconduct and Whistle Blowing which are available online at http://www.lboro.ac.uk/committees/ethics-approvals-human-participants/additionalinformation/codesofpractice/

If you have taken steps to have a concern or complaint about Loughborough University’s handling of data resolved, but are still not satisfied, you have a right to lodge a complaint with the Information Commissioner’s Office (ico), who are the relevant regulator for data privacy and protection matters.  The ico can be contacted at Wycliffe House, Water Lane, Wilmslow, SK9 5AF and you will find more information at https://ico.org.uk.

Informed Consent

Taking part

  • The purpose and details of this study have been explained to me. 
  • I understand that this study is designed to further scientific knowledge and that all procedures have been approved by the Loughborough University Ethics Approvals (Human Participants) Sub-Committee.
  • I have read and understood the information sheet and this consent form.  
  • I have had an opportunity to ask questions about my participation.
  • I understand that I am under no obligation to take part in the study, have the right to withdraw from this study at any stage up until 24th August 2022 (two weeks after survey closes), for any reason, and will not be required to explain my reasons for withdrawing.

Use of information

  • I understand that all the personal information I provide will be processed in accordance with data protection legislation on the public task basis and will be treated in strict confidence unless (under the statutory obligations of the agencies which the researchers are working with), it is judged that confidentiality will have to be breached for the safety of the participant or others or for audit by regulatory authorities. 
  • I understand that information I provide will be used for research and publication.
  • I understand that personal information collected about me that can identify me, such as sexual identity or geographical location, will not be shared beyond the study team. 
  • I agree that information I provide can be quoted anonymously in research outputs.
  • I agree that anonymous data from this study can be used for other, future research projects that may be unrelated to the aims of this study.

Consent to participate

  • I voluntarily agree to take part in this study