Background and Aims People of African and Caribbean descent experienced the highest mortality rates during the pandemic, yet often have the poorest access to palliative care. This study aims to identify how palliative care services can better meet the needs of people of African and Caribbean descent, by exploring patients’ (by proxy), families’ and health, social care and community workers’ experiences of end-of-life-care during the pandemic.
Methods Bereaved relatives, and professionals were recruited using social media, community networks and direct advertising to over 100 organisations. Semi-structured interviews explored experiences of end-of-life-care using a topic guide, developed with patient and public involvement partners. Participants’ suggestions for care improvement were foregrounded throughout. The theoretical framework combined Critical Race Theory and Saurman’s model of access. Thematic analysis was used.
Results Over 40 participants were recruited. Results indicate that people of African and Caribbean descent are poorly served by current services. Interviewees identified distinct differences between the culture of care, and that of the patent. Participants reported institutional racism. Processes were insensitive to diversity in family and community support structures in different cultures. Themes describing end of life care services included:
Unavailable: spiritual support, paid carers, specialist care, visitation and choice
Inadequate: advertisement of services, cultural diversity and the appreciation of the importance of extended families
Unacceptable: communication surrounding death and bereavement (upstream/proactive early discussions would improve engagement) and mental health and bereavement support.
Conclusions People of African and Caribbean descent are often termed a ‘hard to reach’ group. Yet our study suggests that current configuration mean it is services that are hard to reach. Prioritisation of person-centred, culturally competent spiritual, psychological and social interventions remains an aspiration for palliative care. A focus on cultural sensitivity and communication may be a good start to enhance palliative and end of life care for all.
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