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. 2023 Oct;37(9):1447-1460.
doi: 10.1177/02692163231188156. Epub 2023 Aug 23.

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

Felicity Dewhurst  1   2 , Louise Tomkow  3 , Marie Poole  1 , Emma McLellan  1 , Tafadzwa Patience Kunonga  1 , Efioanwan Damisa  3 , Melanie Stowell  1 , Chris Todd  3 , Barbara Hanratty  1
Affiliations

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

Felicity Dewhurst et al. Palliat Med. 2023 Oct.

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.

Keywords: COVID-19; Ethnicity; care; cultural competency; ethnic and racial minorities; palliative care; patient-centred care; professional competence; racism; terminal.

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Conflict of interest statement

Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

    1. Raleigh V, Holmes J. The Kings Fund. The health of people from ethnic minority groups in England, 2021, https://www.kingsfund.org.uk/publications/health-people-ethnic-minority-... (accessed 1 June 2023).
    1. Kapadia D, Zhang J, Salway S, et al. Ethnic inequalities in healthcare: A rapid evidence review. NHS Race Heal Obs, 2022, https://www.nhsrho.org/publications/ethnic-inequalities-in-healthcare-a-... (accessed 1 June 2023).
    1. Hamed S, Bradby H, Ahlberg BM, et al. Racism in healthcare: a scoping review. BMC Public Health 2022; 22(1): 1–22. - PMC - PubMed
    1. Kapadia F, Borrell LN. Structural racism and health inequities: moving from evidence to Action. Am J Public Health 2023; 113(S1): S6–S9. - PMC - PubMed
    1. Volpe VV, Hoggard LS, Willis HA, et al. Anti-black structural racism goes online: a conceptual model for racial health disparities research. Ethn Dis 2021; 31: 311–318. - PMC - PubMed

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