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

Abstract

Background: People of African and Caribbean descent experienced disproportionately high mortality from COVID-19 and have poor access to palliative care. Aim: To explore palliative care experiences of people of African and Caribbean descent during and immediately prior to the pandemic. Design: Qualitative interview study with thematic analysis. Refinement of themes/recommendations in consultation with an expert patient and public advisory group. Setting/participants: Twenty-six bereaved relatives and 13 health/social care professionals (cared for people of African and Caribbean descent) from throughout England, recruited using social media, community networks and direct advertising to over 150 organisations. Results: Three themes were identified: Representation: Participants did not see themselves reflected in the palliative care services and did not expect their needs to be understood. Mistrust of the healthcare system and perceptions of racism were common and led to anticipation of inequitable care. Personalisation: Relatives and professionals reported a lack of cultural and religious sensitivity in healthcare. Assumptions were made based on ethnicity, and services not offered to all. Awareness and education: Professionals felt they lacked the knowledge to provide care to diverse communities, but were reluctant to ask, due to fear of making mistakes. Inequitable access to services was exacerbated by, but not unique to, the pandemic. Participants recommended raising awareness of palliative services, building professional competence in culturally-sensitive care, and greater ethnic diversity within services. Conclusions: Person-centred, culturally-competent palliative care is not the norm for people of African and Caribbean descent. Expectations of inequitable care are widespread. Sustained action on multiple fronts is needed.