Introduction Access to palliative care improves patient outcomes and reduces inappropriate hospital admissions. People from diverse and minoritised ethnic groups may have less access to specialist palliative care services. There is limited research into the experiences of people from South Asian communities accessing palliative care in the UK.
Aims To use narrative to explore participants’ own stories about their access to palliative care.
Methods Narrative Inquiry with in-depth qualitative interviews and focus groups. Interview participants were South Asian, had advanced disease or a serious illness, or were the family carer of a person with one of these conditions. Participants were recruited from specialist palliative care and primary care. Interviews were undertaken in English, Urdu and Bengali/Sylheti by either White British or South Asian interviewers. Interviews were audio or video recorded, transcribed and analysed using narrative methodologies. Focus groups were undertaken to discuss initial findings with healthcare professionals, patients and family carers.
Results Interviews were undertaken with N=27 participants, additional focus groups were undertaken. Key themes included: Places in the healthcare system where people get lost, such as circular referrals, lack of continuity of care and system politics. Issues with treatments and decision-making; and culturally sensitive healthcare issues such as language barriers, preferences for healthcare provider ethnicity, experiences of racism, the role of faith and religion and issues relating to personal care, respect and dignity.
Conclusions Access to palliative care for people from South Asian communities can be improved by focusing on the points in the journey highlighted by participants and improving care quality overall. A Cultural Humility model can be utilised by palliative and primary care services to improve care quality for people from South Asian communities focusing on culturally sensitive issues.
Impact Findings will be disseminated to healthcare professionals in primary and palliative care including recommendations for improving care.
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