Research project – PEACE

Palliative and end of life experiences of people of African and Caribbean Descent during COVID-19

Palliative care services must be sensitive to diversity in religious practices, cultures and languages.

Yet, most guidance into how to provide culturally competent palliative care for ethnic minority groups is out-dated or not representative.

This study looked to address this gap by exploring the palliative care experiences of people of African and Caribbean descent in England during and immediately prior to the COVID-19 pandemic, while also identifying recommendations for service improvement.

The views and experiences of patients (by proxy), families, community workers, and health and social care professionals were sought.

Dr Felicity Dewhurst, Consultant in Palliative Medicine at St Oswald’s Hospice.

2021 – 2022

To explore palliative care experiences of people of African and Caribbean descent during and immediately prior to the COVID-19 pandemic.

Identify service improvement recommendations.

Qualitative interview study with thematic analysis.

Refinement of themes and recommendations were made in consultation with an expert patient and public advisory group.

26 bereaved relatives and 13 health/social care professionals (cared for people of African and Caribbean descent) from throughout England were recruited using social media, community networks and direct advertising to over 150 organisations.

The study found participants did not feel represented in the palliative care services and did not expect their needs to be understood.

Perceptions of racism were common, which led to mistrust and an anticipation of inequitable care.

Relatives and professionals reported a lack of cultural and religious sensitivity in healthcare. Assumptions were made based on ethnicity, and services were not offered to everyone.

Professionals felt they lacked the knowledge to provide care to diverse communities. They were reluctant to ask as feared making mistakes.

Inequitable access to services was exacerbated by, but not unique to, the pandemic.

Participants recommended more awareness of palliative services, building knowledge and skills in culturally sensitive care, and having a greater ethnic diversity within services.

Read the published report below.

Read the report