Page 1: Information Sheet

Measuring hope in dementia

I would like to invite you to take part in a research study. Before you decide whether you want to take part, it is important to understand why the research is being done and what taking part will involve. Please read the following information carefully and discuss it with others if you wish. If there is anything that is not clear or if you would like more information, please contact the researcher using the contact information below.

 

What is the purpose of the study?

The purpose of this study is to understand whether a questionnaire can accurately measure hope for people living with dementia.

We know that the way people experience hope can change with age and following a dementia diagnosis. In previous research, some people with dementia have said that having hope is still possible and it is important for their well-being. However, these hopes may look different, and people may not have big hopes or goals.

Different questionnaires have been developed to measure hope but we need to know more about how well they work for people with dementia. Having a questionnaire measure that we know works for people with dementia would contribute to better interventions and services aimed at improving the wellbeing of people living with dementia. This would also contribute to future research to help establish how hope in living with dementia can be increased.

 

Why have I been invited to take part?

You are being invited to participate in this study because you are living with dementia. To take part you must also be able to read and understand English, or have someone to help you.

 

What will I have to do?

If you choose to take part in the study, you will be asked to complete 4 brief short online questionnaires related to:

  1. Hope
  2. Depression
  3. Optimism
  4. Wellbeing

The questionnaires would be completed online using a computer or tablet.

You will not be asked for your name or any information that could identify you.

You can complete the questionnaire by yourself or with help from others.

If you need support from the researcher to fill out the questionnaires, you can get in touch via telephone or email.

The questionnaire will take around 30-45 minutes to complete. You can take breaks at any time and return to the questionnaire when you are ready. The research finishes once you have submitted the final questionnaire.

If you prefer, you can request a paper version to be posted to your address for you to complete and return. 

 

Do I have to take part?

No. It is up to you to decide if you want to take part. You should only take part if you want to. If you change your mind, you can stop at any time without needing a reason, up until you submit the final questionnaire.

 

What are the possible risks of taking part?

Some people living with dementia could find answering questions about hope and their well-being upsetting. You do not have to take part in the study if you think these questions may be upsetting for you. If you choose to take part in the study but begin to feel upset, you can stop at any time and your answers will not be saved.

Once you have submitted your answers, we will not be able to remove them as all questionnaires are completed anonymously.

At the bottom of this sheet we have provided some resources for if you feel you need any further support. These will be repeated at the end of the questionnaires in a further information sheet. 

 

How will we use information about you?

You will not be required to provide personal details such as your name and address. Your data will be anonymised, and we will not know who has completed the questionnaire.

You can choose to provide us with your address for a paper version of the questionnaire. You can also choose to provide us with a phone number to receive assistance with the questionnaire. We will keep this information about you safe and secure. We will not keep your information any longer than we need to.

You can choose to provide your contact details via phone or email to receive the results of the study. We will keep your contact details safe and secure. Your details will not be linked to your questionnaire responses. When we have contacted you about the results of the study, we will stop storing your contact details.

Data Protection Statement

The data controller for this project will be the University of Hull. The University will process your personal data for the purpose of the research outlined above. The legal basis for processing your personal data for research purposes under GDPR is a ‘task in the public interest’

If you are not happy with the sponsor’s response or believe the sponsor processing your data in a way that is not right or lawful, you can complain to the Information Commissioner’s Office (ICO) (www.ico.org.uk or 0303 123 1113).

 

What will happen to the results of the study?

The results of the study will be written in a paper as part of my university work. The paper will be available online at https://www.hull.ac.uk/choose-hull/study-at-hull/library/resources/theses-and-dissertations. The research will also be submitted for publication in an academic journal or presented at conferences. No personal data will be used. 

 

Who has reviewed this study?

Research studies are reviewed by an independent group of people, called a Research Ethics Committee. They protect the well-being of participants. This study has been given a favourable opinion by the University of Hull Faculty of Health Sciences Ethics Committee and by an NHS Research and Ethics Committee.

 

Who should I contact for further information?

If you have any questions or require more information about this study, please contact me using the following contact details:

Abby Morris

Clinical Psychology, Aire Building

The University of Hull, Cottingham Road

Hull, HU6 7RX

Tel: 07300966773

Email: abby.morris-2018@hull.ac.uk

 

What if I have further questions, or if something goes wrong?

If you wish to make a complaint about the conduct of the study, you can contact the University of Hull using the details below for further advice and information:

 

Dr Emma Wolverson

Clinical Psychology, Aire Building

The University of Hull, Cottingham Road

Hull, HU6 7RX

Tel: 07809415107 / E-mail: E.Wolverson@hull.ac.uk

 

Alternatively please contact university-secretary@hull.ac.uk 

 

 

Resources:

 

Alzheimer’s Society:

Information and support for those living with dementia, families and carers.

https://www.alzheimers.org.uk/

Dementia support line: 0333 150 3456

 

Dementia UK:

Specialist support and advice to individuals and families facing dementia

https://www.dementiauk.org/

Dementia Helpline: 0800 888 6678

 

MIND:

Offers information and advice to anyone experiencing a mental health problem

Infoline: 0300 123 3393

Email: info@mind.org.uk

 

Samaritans:

Provide support to anyone in emotional distress or struggling to cope

Free 24/7 support line: 116 123

https://www.samaritans.org/

 

You can also seek advice from your GP or local NHS mental health service. For urgent advice contact NHS 111 or 999

 

To find local support services for people with dementia and their carers, visit:

https://www.alzheimers.org.uk/find-support-near-you

 

Thank you for reading this information sheet and for considering taking part in this research.

 

Terms of consent:

  • I have read the study information
  • I understand what the study is about
  • I have had the opportunity to ask questions about the study
  • I understand that taking part is my choice and that I am free to stop at any point by stopping the questionnaire
  • I agree to take part in the study

 


 

 

1.1. I agree to take part in the study Required