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Bereaved relatives views

Bereaved relatives views

Overview

What is the end of life care experience of those from black ethnic groups during the coronavirus pandemic?

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Aim

This research will find out what it has been like, for Black people, to die during the COVID-19 pandemic. We will ask bereaved relatives about their experiences, including barriers to End of Life Care (EOLC), unmet needs and how care should have been provided.

This will help identify ways of enhancing End of Life Care for older Black people during and after the COVID-19 pandemic.

The project team would like to set up a public and patient advisory group and also recruit people to take part in the research.

Volunteer Criteria

Advisory group: people from black ethnic groups and people who have experienced loss of a relative during the COVID-19 pandemic 

Research participants: people from black ethnic groups who have experienced the death of a relative during the COVID-19 pandemic 

Inclusion criteria: Relative of a Black person who died during the COVID-19 pandemic.

Exclusion criteria: too unwell/distressed to complete interview; unable to give informed consent.

To minimise distress in the acute post-bereavement period, individuals will not be approached about the study until >2months post bereavement (this is shorter than normal post bereavement research due to the unique circumstances presented by COVID-19). Individuals will be purposively sampled by relationship, gender identity, age and illness of relatives (cancer/non-cancer).

What will I be asked to do?

As a member of the advisory group you will be asked to work alongside the research team to help shape the project's emphasis and approach, outputs and dissemination strategy. There will be approximately three group meetings held (dates TBC) with informal contact in-between as necessary. 

As a participant in the research you will be asked to take part in a one to one discussion with a researcher to discuss the end of life care you relative received during the COVID-19 pandemic and particularly any barriers to and facilitators of end of life care and importantly how care could be improved so that we can provide culturally competent end of life care for all. 

When and where?

The majority of the work required by the advisory group will be in November and December 2020. Meetings will be held online, dates are to be confirmed.

The research participant interviews will take place between January and June 2021. These will be via telephone or video call. 

Will I get anything for taking part?

You will be reimbursed for the the time you give for this project. 

Newcastle University

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Bereaved relatives views Discussion

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Ianeon

Ianeon

18th October 2020

There is a BBC Radio 4 programme "Every Little Helps" which may be of interest to people following this Opportunity.

https://www.bbc.co.uk/sounds/play/m000ndj0

It is available for the next 28 days.

The part about bereavement is towards the end, but the whole programme is quite interesting.

Ianeon

Ianeon

16th October 2020

I am struggling with the aims of this discussion - I don't quite understand what this means: "This research will find out what it has been like, for Black people, to die during the COVID-19 pandemic."

I checked Wikipedia for information on "Reincarnation" and "Afterlife" but I am still none the wiser.

The title of this Opportunity "Bereaved relatives views" I can understand, but I still can't understand how a relative can know how a person died.

I was at my mother's bedside when she died. But I don't know how she felt when this happened.

I was also a member of a small group of people who were with my best friend when he died in hospital, and not much was said at that event.

The researcher emphasizes "Black people" and this I don't understand - is there a difference between Black people and other races dying?

I then went to "The Journal of Palliative Medicine" and the "BMJ journals" and discovered that it is the perceived view of the relatives on judging the care a dying person gets during the sad event which dictates opinions - not the views of the person who is dying.

I couldn't find any recorded instances of the dead giving their views on their death.

My friend, who is very clever, said that it seemed strange that religion isn't mentioned in this research - she thought that as religion, which plays a part in life and a large part in death, would have been a factor of the research.

So, as a member of the public, I am a little confused about this research - sorry.

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