Background National work identifies risk of poorer access to palliative care services for people from ethnic minorities. Locally we identified that our referral rates did not reflect the palliative health needs of our most ethnically diverse borough. Qualitative work was deemed essential to interpret this finding.
Aims To better understand the experiences of Black, Asian and other ethnic minority users of our hospice services and to identify ways to ensure that our services are inclusive for the local population.
Methods Research ethics approval for semi-structured telephone interviews was granted. Patient information leaflets detailing our aims and the option to opt out were sent to individuals who met the inclusion criteria (18 years and over, identify as Black, Asian or other ethnic minority and accessed hospice services between September 2020-2021). On telephone contact, consent was obtained and capacity was checked. The interviews were recorded. The interview comprised nine questions, which were designed with support from the research ethics committee and from our in-house research interest group. Thematic analysis, performed by two researchers, independently, identified patterns and codes within the interview transcripts. Results were then reviewed together to finalise themes.
Results 177 referrals reviewed; 53 potential participants contacted. Eight interviews completed, two by proxy. Reasons for not interviewing included: not consenting, unable to contact, death, current admission, and incorrect coding.
‘I didn’t know’ - unfamiliarity with the service.
‘I have been listened to, I have been understood’.
‘They give me courage’ – feeling informed and empowered.
Conclusion We learnt that most people were unfamiliar with the hospice until they had been referred. Overall, experiences were described as positive with individuals feeling listened to, supported and empowered. There was emphasis on the hospice needing to focus on promotion and collaboration, particularly with other health care providers, to reach Black, Asian and other ethnic minority communities.
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