Pardi, Jane;
Nuzum, Eleanor;
Judickaite, Ugne;
Stott, Joshua;
Charlesworth, Georgina;
Desai, Roopal;
(2025)
South Asian Experiences of Palliative and End-of-Life Care Provision in the UK: A Systematic Literature Review and Thematic Synthesis.
Journal of Palliative Care
10.1177/08258597251343932.
(In press).
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Abstract
Objective: South Asian communities represent one of the largest ethnic minority groups in the UK. Within this group the number of adults requiring palliative and end-of-life care is growing. However, there are often barriers to engagement and underutilization of palliative care services. We aimed to understand the experiences of South Asian patients and/or carers of palliative and end of life care services in the UK. Methods: We conducted a systematic literature review of qualitative data. The review was prospectively registered on PROSPERO (CRD42023442603). Three databases were searched to August 2023. Studies were included if they reported qualitative data on the experiences of South Asian patients, their carers or the perspective of health care staff involved in palliative or end of life care. Quality of studies was assessed using the Critical Appraisal Skills Programme Checklist. Data were analyzed using a thematic meta-synthesis framework. Results: Sixteen studies comprising 407 patients, carers, and healthcare staff were included. The themes identified were: barriers and facilitators to discussing and preparing for end of life; the impact of identity and culture on end-of-life practices and rituals; family roles and expectations regarding palliative care, and navigating challenges across care settings and healthcare interactions. Identified themes highlighted challenges, including language barriers, lack of awareness, and cultural insensitivity. Conclusions: Addressing these gaps through training and culturally appropriate services could significantly enhance the quality and inclusivity of palliative care services for South Asian communities.
| Type: | Article |
|---|---|
| Title: | South Asian Experiences of Palliative and End-of-Life Care Provision in the UK: A Systematic Literature Review and Thematic Synthesis |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1177/08258597251343932 |
| Publisher version: | https://doi.org/10.1177/08258597251343932 |
| Language: | English |
| Additional information: | This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage). |
| Keywords: | South Asian, end-of-life, palliative care, systematic review, qualitative synthesis |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10215044 |
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