Page 1

We invite you to take part in a study

Thank you for taking the time to read about this study.

We recognise what a difficult time this may be for you at the moment and we would like to express our sincere condolences for your loss.


Background and purpose of the study

We are doing this research to understand the grief experiences and support needs of people who have been bereaved either due to COVID-19 or another cause of death during the pandemic.

We are interested in your experiences at the end of life of your loved one (family or close friends). Also, your experiences of grieving, any support that you feel you have needed during your bereavement and what support you have received.

We hope that your responses to our questions will help us to identify ways to improve end of life care during the pandemic and the support that is available for people who are bereaved. We will also provide information about services that could support you during this time.

This survey is being carried out by Cardiff University and the University of Bristol and is funded by the Economic and Social Research Council. It should take around 20-30 minutes to complete, depending on how much you would like to share about your experiences. 

Who can take part:

  • Anyone aged 18 or over
  • Anyone who has experienced the loss of a close family member, friend or other loved one who died in the UK since the 16th March 2020, whether this was caused by COVID-19 or another cause of death.

At the end of the survey, you will be asked if you would like to be contacted to discuss some of your experiences in more depth in an interview with a researcher. We will also ask your permission to send you two similar questionnaires in the next year to see how things may have changed for you. If you agree to this, we will send these out to you around 7 and 13 months after the date that your loved one died. 

For more information, please read the following sections.

Risks and benefits:

This survey asks questions about the loss of your loved one(s) during the COVID-19 pandemic and could become difficult to answer. Should you become upset and feel you need support during or after you have completed the survey, please get in touch with our researcher Dr Emily Harrop who can guide you towards appropriate services. Alternatively, you can access support from these services:

When using the internet, there can be a risk of compromising privacy, confidentiality and/or anonymity. We are using a secure online survey platform to minimise this risk (Jisc Online Surveys), further information is provided below.

By completing this survey on your experiences of bereavement during COVID-19, you are helping us to learn about the key issues that you have faced and to identify ways of improving the care provided at the end of life and during bereavement.

Voluntary participation:

Participation in this study is completely voluntary. You may choose not to answer some or any of the questions. If you decide to withdraw at any stage, you do not have to give any reason and your decision will be respected.

If you would like to withdraw your data from the study, please contact the researcher using the contact details below. However, please be aware that it may not be possible to withdraw data that has been anonymised and analysed.


Confidentiality:

Your answers will be seen only by the research team based at Cardiff University. Ethical approval to conduct the study has been granted by Cardiff University School of Medicine Research Ethics Committee. Any information that you provide, including any quotations that we use from your responses, will be anonymised to make sure you cannot be indirectly identified.

The information you provide will remain confidential, however if your answers were to identify any area of sub-standard care, malpractice or abuse, the researcher has a statutory duty to raise this with the appropriate bodies.

Data protection and usage:

By participating in this survey, you are agreeing that we may include your survey responses (anonymously) in future reports, professional journals and future research. Some anonymised data will also be shared with colleagues in the UK and in Europe, to enable national and international comparisons to be made. Anonymised study findings may be presented at professional conferences, in promotional material (e.g. press releases) and in educational settings. 

In line with Cardiff University policies and General Data Protection Regulations (GDPR; EU 2016/679) and the Data Protection Act 2018 (DPA 2018), your research data will be kept securely for 10 years after the study is completed and securely destroyed at the end of the 10 years. If you provide us with contact details for follow up questionnaires, interviews or to be sent further information about this or other research studies, these details will be kept securely for up to a year after the study ends and securely destroyed once they are no longer needed. Anonymised research data will also be archived so that it can be used by other researchers in the future.

All data collected in the on-line survey will be held securely by the survey software provider Jisc Online Survey (www.jisc.ac.uk) under contract and then retained by Cardiff University in accordance with the GDPR; EU 2016/679 and DPA 2018. For more information on data protection, please follow the link: General Data Protection Regulation (GDPR; EU 2016/679). Cookies (personal data stored by your web browser) are not used in this survey.

Instructions for completion

  • This survey contains 4 sections and 36 questions.
  • It should take around 20- 30 minutes to complete.
  • The survey can be completed in more than one sitting by clicking the 'finish later' link at the bottom of the page. You will then need to either bookmark your unique URL link in your browser or ask for it to be emailed to you. You can navigate the survey and edit your answers up to the point you click the 'finish survey' button.

If you would like a paper or Microsoft Word version of the survey or a copy of the survey in Welsh or another community language please contact us using the contact details provided. Please also contact us if you would prefer to complete the survey over the phone or by Zoom with one of our researchers instead.

Contact information:  If you have any concerns or questions relating to this research project, please email the researcher Dr Emily Harrop, harrope@cardiff.ac.uk or TEL: 02920 687184. Additionally, if you have a complaint or other queries, contact the research centre’s Director Professor Annmarie Nelson on NelsonA9@cardiff.ac.uk.

Alternatively, you can contact the research centre via 02920 687175 or email mariecuriecentre@cardiff.ac.uk to be directed to the appropriate individual. Our postal address is: Marie Curie Palliative Care Research Centre, Cardiff University, 8th Floor Neuadd Meirionnydd, Heath Park, Cardiff, CF14 4YS.