The views of bereaved people on the guide to Deathbed Etiquette
Research type
Research Study
Full title
Exploring the views of bereaved people on using the guide to Deathbed Etiquette in end-of-life care
IRAS ID
317322
Contact name
A Gadoud
Contact email
Sponsor organisation
Lancaster University
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
Summary of Research
Background:
Society finds dying a difficult topic to discuss. People may not know what to expect when a friend or family member is dying. Experts in palliative care have made a guide to Deathbed Etiquette. This guide includes information to help people when a friend or family member is dying. There is also a separate COVID-19 guide.
Aim:
In this study we want to talk to people who have experienced the death of a friend or family member. We want to find out if they think the guides are helpful, or not.
Eligibility:
People over the age of 16 years who have experienced the death of a friend or family member within the last six months.
Design:
Hospitals and hospices will invite people to take part. Adverts will also be posted online and in community centres inviting people to take part. The research team will interview people who take part in a group or on their own. Interviews will be by video call, telephone or in person.
We will use the information from the interviews to look for any patterns and to make suggestions to improve the guide and its use.
The research will last for 24 months. Greater Manchester and East Cheshire Strategic Clinical Networks will help to fund this study.
Patient and public involvement:
The Centre for the Art of Dying Well created the guide by asking friends and relatives to share their experiences. The researchers for this study have also spoken to members of the public about the development of this research plan. Our findings will be written in papers, and we will also tell people at conferences.
Summary of Results
We would like to extend our gratitude to everyone who took part in the research study.
Background: Society finds dying a difficult topic to discuss. People may not know what to expect when a friend or family member is dying. Experts in palliative care have made a guide to Deathbed Etiquette. This guide includes information to help people when a friend or family member is dying. There is also a separate COVID-19 guide.
Aim: In this study we talked to people who have experienced the death of a friend or family member. We wanted to find out if they think the guides are helpful, or not.
Design: The research team interviewed people by video call, telephone or in person.
Results: We spoke to 22 bereaved people. They expressed a need for written information to help them understand the dying process and support them through caring for their loved one. There was positive feedback on the content and format of the guide. However, it was clear that there is significant variability between experiences of the dying process, and capturing those experiences in a written resource is challenging. It was generally agreed that the guide would need to be used as part of a conversation with a healthcare professional about the dying process, although participants also felt it could be available to the wider public as part of a drive to improve death literacy and reduce the stigma surrounding dying.
These results will help develop the content of the guide and how it is used.
For more information about the guide https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Ftrack.pstmrk.it%2F3ts%2Fwww.artofdyingwell.org%252Fcaring-for-the-dying%252Fdeathbed-etiquette%252Fetiquette%252F%2FNBTI%2FBNXCAQ%2FAQ%2F495ae530-87ac-45cc-89f0-3f7226093e3b%2F2%2FLhj0XFmxlm&data=05%7C02%7Capprovals%40hra.nhs.uk%7Cef239aa881a243b892be08de579c954a%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C639044527200560091%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=2vmZUcFM0DhhiVxHTzRFfu6Q23ug8pesZFS4whz1Mgo%3D&reserved=0To learn more about this study, you can email a.gadoud@lancaster.ac.uk
REC name
West of Scotland REC 3
REC reference
23/WS/0060
Date of REC Opinion
16 Jun 2023
REC opinion
Further Information Favourable Opinion