Grief: A Study of Human Emotional Experience
Questionnaire Study

Summary
This questionnaire study is part of a four-year project entitled “Grief: A Study of Human Emotional Experience”. The project is a philosophical investigation of what it is like to experience grief, in all its diversity. It is funded by the UK Arts and Humanities Research Council and started on 1st January 2020. The aim of the aim of the project is to better understand aspects of grief that people find especially difficult to make sense of and convey to others. We hope that this work will also yield practical benefits.

As part of our project, we are conducting a questionnaire study on first-person experiences of grief.  Anyone who is currently over the age of 18 and who has experienced grief over the death of a family member or friend is invited to complete the questionnaire.  Those who are currently experiencing grief and those who wish to reflect on a past experience of grief are equally welcome to participate. We appreciate that many participants will have experienced grief on more than one occasion. Where that is the case, we ask you to focus on the experience of losing a particular person, either your most recent bereavement or the on that has affected you most.

In order to complete the study, you will first be asked to read a participant information sheet and then to sign a consent form. After that, you will be able to complete a series of questions. The first few questions ask for information concerning your age, gender, nationality, religion and occupation.  The remaining questions all concern your experience of grief. All of these involve free-text responses. You are welcome to write as much or as little as you like, and all of the questions are optional.
	
Your answers will be reproduced, in whole or in part, in publications by researchers. They may also appear in publications aimed at a wider audience. In addition, responses will be accessible to the general public, via a project website and university repository. Data will be retained indefinitely and for at least ten years. All data will remain strictly anonymous. You are asked not to include any information in your answers that could potentially identify you or any other person. Where such information is included, it will be deleted upon receipt.

You do not need to supply any personal details in order to give your consent to participate in the study. However, when you have finished the questionnaire, you will be invited to provide your email address, if you are willing to answer follow-up questions or to participate in further studies. If you decide to do so, the information will be stored securely and separately from your questionnaire. It will only be accessible to one member of the project team and will not be passed on to anyone else.

We are very grateful to you for engaging with our research. If you wish to follow the progress of our project, you can do so via the project website:  https://www.griefyork.com/
If you have any questions, you are also welcome to contact us via email: grief-project@york.ac.uk

Information Sheet

Before agreeing to take part, please read this information carefully and let us know if anything is unclear or you would like further information. 

1.	Participation 

Can I participate? 
Anyone over the age of 18 and who has experienced grief over the death of a family member or friend is invited to complete the questionnaire. 

Do I have to take part?
No – participation is entirely voluntary. After you have read this information sheet, you will be asked to tick a box to give your consent to participate. Even after you have consented to participate, you will have the option to leave the study and/or withdraw your responses. 

What will happen if I don't want to carry on with the study?
You are free to leave the questionnaire at any time. If you have filled in the questionnaire (in full or in part), but wish to withdraw your responses, you can do so for up to 14 days. You do not have to provide a reason. You can do this by emailing us the unique ID code that will be provided to you at the end of the questionnaire, which will allow us to locate your responses. If you have partially completed the questionnaire, responses will be stored after 7 days of inactivity. 
 
Will I have access to research outputs?
Participants will have access to research outputs through: (a) our project website: www.griefyork.com; (b) Research Data York – a university repository; (c) publications that result from the study.  

Are there any risks, burdens, or benefits associated with my participation?
This study will encourage you to reflect upon your experience of grief. Some participants may find this challenging, uncomfortable or upsetting. You are free to skip any questions that you would prefer not to answer, and you can exit the form and return to it later (for periods of up to 7 days of inactivity). If you become distressed while filling in the questionnaire, we encourage you to exit the study and seek appropriate support. Some sources of support are listed below in Section 3. 

Participating in the questionnaire also involves the minor burden of giving up your time to complete it. Please keep in mind that you can spend as much or as little time as you like on answering the questions. 

Although there are no concrete benefits associated with participation in the survey, some may find it helpful to have the opportunity to reflect on and share their experience of bereavement.

2.	Data Management
 
Will I be identified in any research outputs?
You will not be identified in any research outputs and all responses will be completely anonymised. We ask that you do not include any identifying information in your responses, but this will be carefully checked by core members of the research team. We may include details such as your age, gender, and nationality, but any information that could identify you or others will be removed. 

At the end of the questionnaire, you will have the option to provide us with your email address if you are happy to be contacted for follow-up questions or other future studies. This information will be stored securely and separately from other data, and will be kept strictly confidential. 

Will you share my answers with 3rd parties?
By consenting to participate in this study, you are agreeing to the indefinite re-use and unlimited sharing of anonymised data. Anonymised answers will be made freely available to other researchers and the general public. Anonymised answers may also be quoted in full or in part in publications. 

How will you keep my data secure?
Your responses will be collected through Qualtrics. All data in Qualtrics is encrypted in transit using Hypertext Transfer Protocol Secure (HTTPS). Only two members of the research team will have access to the data on Qualtrics. 

When the data collection period is over, your responses will be saved in a password-protected folder in a secure university server. If you choose to provide an email address, this will be saved in a separate password-protected folder. Only one member of the research team will be able to link the email addresses to the responses and will be bound by confidentiality. 

Will you transfer my data internationally?
Your data will be collected using Qualtrics. Qualtrics generally processes all EU data in the EU, and does not transfer this data out of the EU. Please refer to this page for more information: https://www.qualtrics.com/support/survey-platform/getting-started/qualtrics-gdpr-compliance/

Once the data is saved onto the secure University server, it will not be transferred outside of the UK.  

How long will you keep my answers?
Anonymised responses will be retained indefinitely, and for at least ten years. Responses will be deposited with ‘Research Data York’, a university repository that will guarantee at least ten years’ storage.  

3.	Further information

The Research Team
The research team is based at the University of York and are researchers on the AHRC-funded project “Grief: A Study of Human Emotional Experience”. The team consists of:
 
Prof. Matthew Ratcliffe
Dr. Louise Richardson
Dr. Becky Millar
Eleanor Byrne 

Visit our website for more information: www.griefyork.com 

Who should I contact if I have a question, concern, or complaint?
If you have a question, concern, or complaint you can contact us at grief-project@york.ac.uk. 

Ethical approval
[To be filled in once we have ethical approval]

Support 
If you are struggling with grief, there are sources that you can contact for support. In the UK, these include:
-	Your GP 

-	Cruse Bereavement Care - P: 0808 808 1677 (Mon-Fri, 9am-5pm); E: helpline@cruse.org.uk; W: www.cruse.org.uk

-	TCF (support for those affected by the death of a child) - T: 0845 123 2304 (10am-4pm and 6.30pm-10.30pm); W: www.tcf.org.uk

-	Stillbirth and Neonatal Death Society (SANDS) – P: 0808 164 3332; W: www.sands.org.uk

-	London Friend: LGBT Bereavement Helpline - T: 0300 330 0630 (Tues 7.30pm-9.30pm); W: www.londonfriend.org.uk

-	Survivors of Bereavement by Suicide - T: 0300 111 5065 (9am-9pm); W: www.uk-sobs.org.uk

-	The Samaritans - P: 116 123 (free 24-hour helpline); W: www.samaritans.org.uk

4.	Informed Consent

By consenting to participate in this study, you confirm that you are over the age of 18, that you have read and understood the above information about how your data will be stored and used, and that you agree to the indefinite re-use and unlimited sharing of your anonymised responses. You also confirm that you understand that you have the right to withdraw your responses (by emailing us the ID code at the end of the questionnaire) within two weeks of submitting them.

Do you consent to participate in this study? 

Yes	[ ]
No	[ ]

Questionnaire	

Age:
Gender:
Nationality:
Religion:
Occupation:

Please tick one of the following boxes:

My answers concern a current, ongoing experience of grief.	[ ]

My answers concern a past experience of grief. 			[ ]

Present Tense Version

1.	What was the nature of your relationship with the person who died?

2.	Please can you tell us about the circumstances of the bereavement, including when it occurred?

3.	How has the person’s death affected you during the hours, days, and weeks that followed?

4.	How, if at all, have your relationships with other people (particular individuals and other people in general) been affected by the bereavement?

5.	Does the surrounding world seem any different to you while grieving? If so, how?

6.	Has your experience of time changed in any way?

7.	During your grief, has your body felt any different?

8.	Has grief interfered in any way with your ability and motivation to perform various tasks, including paid work?

9.	Is your experience of grief changing over time? If so, how?

10.	Have you ever found yourself looking for the person who died or expecting that person to appear? 

11.	Are there times, places, and occasions that have made you especially aware of the person’s absence?

12.	People who are grieving often report experiencing the presence of the person who died. Have you had any experiences that you would describe in those terms?

13.	Do you still feel a sense of connection with the person? If so, could you say something about when you feel this and what the experience is like.

14.	Since the person died, is there anything that you have been doing in order to feel close to them?

15.	Is there anything that you do in order to avoid being reminded of the person or of their death?

16.	Have you done anything in particular to help you cope with grief? Has anything you have done made you feel better or worse?

17.	How understanding have other people been? Have others said or done anything that you’ve found especially helpful or unhelpful?

18.	How, if at all, has your experience of bereavement changed you as a person?

19.	How, if at all, does grief over the death of a person differ from other forms of loss that you have experienced?

20.	Are there any aspects of grief that you find particularly puzzling or difficult to put into words?

21.	Are there any important aspects of your experience that we have not addressed?

Past Tense Version

1.	What was the nature of your relationship with the person who died?

2.	Please can you tell us about the circumstances of the bereavement, including when it occurred?

3.	How did the person’s death affect you during the hours, days, and weeks that followed?

4.	How, if at all, were your relationships with other people (particular individuals and other people in general) affected by the bereavement?

5.	Did the surrounding world seem any different to you during grief? If so, in what ways and for how long?

6.	Was your experience of time altered in any way?

7.	Did your body feel any different while you were grieving?

8.	Did your grief interfere in any way with your ability and motivation to perform various tasks, including paid work?

9.	Did your experience of grief change over time? If so, how?

10.	Have you ever found yourself looking for the person who died or expecting that person to appear? 

11.	Are there times, places, and occasions that have made you especially aware of the person’s absence?

12.	People who are grieving often report experiencing the presence of the person who died. Have you had any experiences that you would describe in those terms?

13.	Do you still feel a sense of connection with the person? If so, could you say something about when you feel this and what the experience is like.

14.	Since the person died, is there anything that you have done or continue to do in order to feel close to them?

15.	Is there anything that you do in order to avoid being reminded of the person or of their death?

16.	Have you done anything in particular to help you cope with grief? Has anything you have done made you feel better or worse?

17.	How understanding have other people been? While you were grieving, did others say or do anything that you found especially helpful or unhelpful?

18.	How, if at all, has your experience of bereavement changed you as a person?

19.	How, if at all, does grief over the death of a person differ from other forms of loss that you have experienced?

20.	Are there any aspects of grief that you find particularly puzzling or difficult to put into words?

21.	Are there any important aspects of your experience that we have not addressed?