Thank you for taking part in our research project. We want to make sure you understand the aims of the project, why the research is being done and what your participation will involve. Please take time to read the following information carefully and discuss it with others if you wish.
Do I have to take part in the project?
Taking part in the project is entirely voluntary and will also be asked to provide consent to take part.
What do I have to do if I participate other than filling in the surveys?
If you decide to take part we may invite you to have a discussion over the telephone or using Microsoft Teams about your experiences. The people that you will be speaking to will have received training from the research team around undertaking interviews.
Things that you might discuss include:
- some information about yourself (your age, whether you work, where you live and who with)
- whether you or someone you support was advised to shield during the pandemic
- the different types of support you may or may not have received from the community, from health or social services or any other source
- whether you think your faith has affected your experiences during the pandemic
We will record these interviews and you will be able to withdraw your data up to four weeks after the interview if you wish to. You do not have to answer all of the questions asked and can stop the interview at any time. Should you wish to end the interview early, we would analyse the data collected up until the end of the interview. You will have four weeks after the date of the interview to let us know that you would not like us to use any data collected from you.
Why is the commission only wanting evidence from those who experience bereavement during the past five years?
The Bereavement Commission is exploring the support received by people experiencing bereavement, and how this could be changed to better support people now and in the future. With this in mind, if we took evidence of experiences over a longer period, we would risk the commission raising historical issues which no longer require action in policy or practice as a result of the issues having been engaged with, or as a result of the context having otherwise changed.
However, if you were bereaved longer than five years ago, we would still like to hear about your experience as many of the issues you have faced will continue to affect people experiencing bereavement today.
Therefore, please do tell us your story. When you submit your story, please indicate when you were bereaved so that we can reflect your experience accurately.
What are the possible disadvantage and risks of taking part?
We do not anticipate any risks or harm to you as a result of taking part in this project. However. we recognize that the pandemic has been a very difficult time.
We appreciate that some of the questions asked during the study may be hard to answer. If you would like further help and support around your bereavement, the following services can help.
A charity that signposts to bereavement support services, information, helplines and resources in the UK.
An online directory of support services available across the UK. You can filter the options based on where you live and what kind of support you would like to receive.
Other support for stress and anxiety can be found on the NHS website.
Several national bereavement organisations have helplines and online support, including:
Phone: 0808 808 1677
A national charity that offers a variety of support, including a helpline, online support and local support groups.
Phone: 0800 090 2309
A national charity that offers a range of support and signposting options.
Phone: 0800 2600 400
The National Health Service's support line for those going through a bereavement.
What are the possible benefits of taking part?
We are hoping that the project will highlight the key issues that people have experienced during the pandemic so that we can advocate for change and better support where it may be needed.
What if something goes wrong?
If you have a concern about any aspect of this project, in the first instance you should ask to speak to Marie Curie Support team who will do their best to answer your questions. However, you feel your complaint has not been handled to your satisfaction you can contact the commission directly.
Will my taking part in this project be kept confidential?
All the information that we collect about you during the course of the research will be kept strictly confidential. You will not be able to be identified in any ensuing reports or publications.
Organisations submitting evidence though do have the option to opt in to have their name attributed in the interim and final reports.
Organisations submitting evidence though do have the option to opt in to have their name attributed in the interim and final reports and/or to have their evidence published on the UKCB website
Limits to confidentiality
Confidentiality will be respected subject to legal constraints and professional guidelines meaning there are compelling and legitimate reasons for this to be breached. If this were the case we would inform you of any decisions that might limit your confidentiality
Can someone help me complete the surveys over the phone, if there a number I can call?
Yes, please feel free to call Independent Age if you are aged 65 and over
0800 319 6789
or call Marie Curie on
0800 090 2309
if you are 65 and under if you are 18 and under and wanted to complete the Children and Young People's survey.
What will happen to the results of the research project?
The results gathered from you and other participants will be used to help us find out what the key issues are on Bereavement in the UK. We will then discuss the key issues raised by participants with health and social care professionals in the UK to develop best practice recommendations for people, we support in the community.
You may also be invited to take part in a workshop later in the year to discuss the key themes that all participants told us about. The results of the research will be shared on this website and in research papers and other academic journals.