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Speak Their Name Quilt Maker Questionnaire Information Sheet

North East Speak Their Name Quilt

A qualitative study to understand the impact that the Speak Their Name North East quilt has had on the people who have made it and how has this has raised awareness of suicide?

Researchers: Suzanne Hamilton, Head of Improvement and Development, North East North Cumbria Integrated Care Board    suzanne.hamilton@nhs.net

Dr Matthew Breckons PhD, Senior Research Associate, University of Newcastle matthew.breckons@newcastle.ac.uk


You have been invited to take part in the above research study. This study will involve completing a short online survey about your views and experiences around using creating the Speak Their Name quilt.

Before deciding whether or not you would like to take part, it is important that you know the reasons behind why this study is being carried out and what taking part would mean for you.

Please take the time to read all the information carefully in order to decide whether you would like to take part in the study or not.

The leaflet has been divided into two parts:

Part 1- Has details of the study and what will happen to you if you take part.

Part 2- Has more detailed information about how the study will be carried out.

Please feel free to contact Suzanne.hamilton@nhs.net to ask if there is anything that is unclear or if you would like any more information.

Thank you for taking the time to read this information.


Part One

Firstly, I am sorry for your loss and thank you for being part of the community of quilt makers involved in Speak Their Name North East.

Research has shown that the creation of memory quilts can provide support to those who are bereaved by creating space to grieve, connecting with individuals who understand and providing opportunity to reflect on the lives of their loved ones. It also creates an opportunity to raise awareness of suicide in others.

This study aims to understand the impact that your involvement in the Speak Their Name quilt has had on the people who made it. We specifically would like to understand more about why you wanted to be involved, the difference that it has made to you and how you have shared your involvement in the work.

The outcomes from the study will inform the evidence of how quilt making can support those who have been bereaved by suicide and raise awareness of suicide as part of prevention.

Why have I been asked to take part in this study?

You have been asked to take part as you have participated in the creation of the Speak Their Name quilt.

Do I have to take Part?

No, the choice is completely yours.

If you do decide to take part, then you will be asked to complete a short online survey.

You are free to change your mind and withdraw from the study at any time and do not need to give a reason and you may additionally request that any information you provide is not used.

What will happen if I take part?

If you agree to take part, you will need to access the online questionnaire using this link shared in your closed Facebook group.

The questionnaire comprises of 4 questions and may take around 15 - 20 minutes to complete.

At the beginning of the questionnaire, you will be asked to provide your consent for the study.

You can end the questionnaire at any point.  

Should you require a copy of the final study report you will be able to leave your contact details, please email the researchers.

What are the potential advantages or risks to me taking part?

The study may not help you directly, but the findings of the study could help support similar projects or suicide prevention work in the future.

It is possible that you may find answering the questions provokes difficult memories. If this should happen the following organisations will be able to support you:

Survivors of Bereavement by Suicide - Overcoming the isolation of people bereaved by suicide (uksobs.com)

Papyrus UK Suicide Prevention | Prevention of Young Suicide (papyrus-uk.org)

What if there is a problem?

Any complaints about the way that you are dealt with during the study, or any possible harm that you suffer, will be addressed. Further details regarding this are given in Part Two of this Information Sheet.

Will my taking part in the study be kept confidential?

Yes. All information collected about you in this research will be kept confidential. More detailed information about this is given in Part Two.

Who can I contact for further information about the study?

If you are interested in the study and would like more information or have any questions, then please contact the researcher using the following details.

Suzanne Hamilton, Associate Director of Improvement and Organisation Development, North East North Cumbria ICB, Parkhouse Building, Baron Way, Kingmoor Park, Carlisle, CA6 4SJ



This completes Part One of the Information Sheet. If the information in Part One has interested you, and you are considering taking part in the study, then please read the additional information in Part Two before making your final decision.


Part Two

What if there is a problem?

If you have a concern about any aspect of the study, you should speak to the researchers who will do their best to answer any questions that you have. If you wish to speak to someone else about the study, please contact:

Kathryn Grayling

Deputy Director People and Culture, North East North Cumbria ICB


Unfortunately, we are only able to answer questions about this study.

Will my taking part in this study be kept confidential?

All information will be kept confidential and no information obtained from the questionnaire will be attributable to you. Only the researcher will have access to the information and data relating to the study.

What happens to the results of the study?

The study will take up to six months to complete. A summary of the results of the study will be made available to all those who have taken part if they wish to have it and have provided an e-mail address.

Findings will be shared with members of the North East and North Cumbria Integrated Care Board who have supported the Speak Their Name project.  The North East North Cumbria Integrated Care Board is a statutory organisation with responsibility for NHS Budgets, functions and performance and of partnerships across our health and care system.

In addition to this, the report may also be published in scientific journals and presented at scientific conferences. You will not be identified in any information written or presented about the study.

Who is organising the study?

The study is being undertaken by the North East North Cumbria Integrated Care Board.

Who has reviewed the study?

The study has been reviewed by the ethics committee at the Faculty of Medical Sciences, Newcastle University.

GDPR Statement

The North East North Cumbria Integrated Care Board will be using information from you in order to undertake this research study and will act as the data controller for this study.  This means that the North East North Cumbria Integrated Care Board is responsible for looking after the information you give and using it properly.  When we use personally-identifiable information from people who have agreed to take part in research, we ensure that it is in the public interest.  Your rights to access, change or move your information are limited, as the North East North Cumbria Integrated Care Board needs to manage your information in specific ways in order for the study to be reliable and accurate.  If you withdraw from the study, the North East North Cumbria Integrated Care Board will keep the information about you that has already been obtained.  To safeguard your rights, the minimum personally-identifiable information will be used. 

We will use your name and contact details you provide to share with you the final study report should you wish to receive it.

This information will not identify you and will not be combined with other information in a way that could identify you.  The information will only be used for the purpose research and cannot be used to contact you.  It will not be used to make decisions about future services available to you.

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