Title: COVID 19 - Palliative and End of life Care experiences of people of African and Caribbean decent (PEACE)
Funder: Department of Health and Social Care

Abstract: Background End-of-Life-Care (EOLC) improves health-related quality of life and life-expectancy (1), despite this one in four UK families miss out on crucial support particularly those from Ethnic Minorities groups (2&ndash;5). Research into EOLC for Ethnic Minorities is out-dated, out-with the UK, or from London, where Ethnic Minorities make up over 40% of the population (5&ndash;9). We know nothing of EOLC experiences of Ethnic Minorities in areas of the UK where they are more disparate, despite national research calls for such information (5). Key research policy priorities are to promote equity in EOLC, specifically to rectify &quot;poor outcomes amongst Black, Asian and minority ethnic (BAME) populations&quot; (8&ndash;12). BAME groups are heterogeneous. Older Black people are a crucial tracer population for achieving patient-preferred outcomes, and they experience some of the highest levels of material disadvantage (5,10&ndash;12). During the COVID-19 pandemic, deaths amongst Black populations have been twice as high as in White populations of similar socioeconomic status (13). Despite this Black people are still less likely to access end-of-life services (10,14&ndash;17), which play a crucial role in improving care (18). It is unclear why this is and how service changes have exacerbated this. Aims and objectives To identify family priorities for EOLC development, to meet the needs of Black people during and after the COVID&mdash;19 pandemic. We will explore family and patient (by proxy) views on; experiences of EOLC (positive/negative), barriers to EOLC and how EOLC could better meet Black people s needs. Methods We will conduct a qualitative study using in-depth semi-structured interviews. Bereaved relatives of decedents (>50 years) who identified as being Black African, Black Caribbean or Black other (13) and who died during the COVID-19 pandemic will be recruited/purposively sampled through community groups, social media and targeted online advertising (23). The sample will be balanced by relationship, gender-identity, age and decedent s illness (COVID-19/cancer/non-cancer). Previous experience suggests no more than 60 interviews will be required to ensure data sufficiency. Interviews will be conducted following COVID-19 guidelines. The topic guide, developed with PPI partners and drawing on VOICES survey domains (19), will allow participants to share their experiences. Prompts will elicit information about needs (met/unmet), experiences/views, support structures and barriers to care. We will use a modified theoretical framework of access and critical race theory which consider service availability, accommodation, affordability, acceptability and awareness (20&ndash;23). Policy engagement, dissemination and impact Our research will support policymakers to accommodate recent changes in service, whilst addressing structural, cultural and behavioural challenges to equitable EOLC. The team will undertake targeted dissemination of emerging findings, including 10-minute COVID-19 webinars and existing monthly Department of Health and Social Care/Policy Research Unit meetings from March 2021 until November 2021. We will also present findings to the National Clinical Director for End-of-Life and the National End-of-Life Care Intelligence Network. We will deliver three main outputs: A formal report and briefing of findings, following a 1/3/25 page format, for policy makers (November 2021), an article in peer-reviewed journal (December 2021); and public-facing report developed for bereaved relatives/carers (November 2021).

Lay abstract: Research aims This research will explore the end-of-life-care experiences of Black People during the COVID-19 pandemic. It will give a voice to bereaved relatives, listen to their views on the care their relative received and how it could have been improved. Importance One in four UK families miss out on crucial 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. There is only one chance to get end-of-life-care right, and services should work well for everyone. In this study, we will focus on the 1.9 million people in the UK who identify as being Black African, Black Caribbean or Black Other as defined by Office of National Statistics. Why is this important now? Black people are more than twice as likely to die of COVID-19 than White people. We want to make sure Black people can access the end-of-life-care services that they need, during the ongoing pandemic and into the 2020s. To make services available to all, we need to understand the priorities of Black people at the end-of-life and barriers to good end-of-life and bereavement care. How will we do the research? We will interview bereaved relatives of Black people 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 (e.g. 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 Black people. It will also form a basis for future work on interventions and care pathways. How will we disseminate our findings? We will suggest strategies to improve care, provide information to change national policy, and identify areas for future research. We anticipate education of healthcare professionals and policy makers on patients needs and patients, families and communities on available services will be key. We will link with policy leads at the Department of Health and Social Care, Public Health England and charities including Hospice UK. We will use social media and local events to share findings with participants and their communities. Through project partners including; St Oswald's Hospice, Health and Race Equality Forum, Community Health Projects and Refugee Services we will facilitate access to and cultural competency within end-of-life-care . Patient and Public Engagement Black people with recent end-of-life-care experience and experienced professionals shaped our research questions and will work with us to; ensure the study is sensitively run, help us to make sense of the data and share our findings.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: INFECTION