Palliative and end of life care experiences of people of African and Caribbean descent during COVID-19 (PEACE)

One in four UK families miss out on end of life care. People from ethnic minorities face barriers when accessing end of life care services and are less likely to receive good care. We need to know why this is, and how this can be changed.

People of African and Caribbean descent have been more than twice as likely to die of COVID-19 as people from some other ethnic groups. We want to make sure people from African and Caribbean descent can access the end of life care services that they need.

Aims

• Understand the priorities of people from African and Caribbean descent at end-of-life and barriers to good end of life and bereavement care.
• Give a voice to bereaved relatives, and listen to their views on the care their relatives received and how it could have been improved.

Research methods

We will interview bereaved relatives of people of African and Caribbean descent who have died during the pandemic. We will explore which services were and were not used in the last months of life, and the reasons for this (for example, access or awareness).

We will also explore how they felt about the care, and what they would change. This information will be used to determine how future services can be sensitive to the needs of people of African and Caribbean descent. It will also form a basis for future work on interventions and care pathways.

Health, social, voluntary and community organisations offer a broad range of services and can be diverse in their provision, for example, who they support and how.

As such, we would like to speak to professionals who were involved in providing care and support to people and their families, particularly those who identify as being from African and Caribbean descent and died during the pandemic (not necessarily as a direct result of COVID-19).

People of African and Caribbean descent with recent end of life care experience shaped our research questions and will work with us to ensure the study runs sensitively.

Policy relevance

We will suggest strategies to improve care, provide information to change national policy, and identify areas for future research.

We will link with policy leads at the Department of Health and Social Care, Public Health England and charities including Hospice UK, using social media and local events to share findings with participants and their communities.

Through project partners including St Oswald’s Hospice, Hospice UK, Health and Race Equality Forum, Community Health Projects and Refugee Services, we will facilitate access to and cultural competency within end of life care.

Delivery timeline

1 June 2021 to 31 March 2022

Information for participants

• PEACE study poster for relatives (PDF)
• PEACE study poster for professional workers (PDF)
• PEACE participant information sheet (PDF)

Associated publications and resources

• Meet PHSI colleague Patience Kunonga who shares her experience working on the COVID-19 PEACE Project – Newcastle University Population Health Sciences Institute EDI Blog
• Dewhurst et al (2023) “Unrepresented, unheard and discriminated against: A qualitative exploration of relatives’ and professionals’ views of palliative care experiences of people of African and Caribbean descent during the COVID-19 pandemic” (Palliative Medicine). DOI: 10.1177/02692163231188156
• Executive Summary, Full Report (PDF)