Engaging with Culturally and Linguistically Diverse Communities to Promote Palliative Care That Exceeds Expectation

ABSTRACT Introduction Given longstanding barriers that obstruct integrated palliative care, particularly for culturally and linguistically diverse communities, this article demonstrates a way to engage with Syrian, Bhutanese and African communities to learn about brilliant palliative care with and f...

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Main Authors: Ann Dadich, Gregory Crawford, Peter Laintoll, Issac Zangre, Kamal Dahal, Dalia Albrezi, Cathie Jeffs, Aileen Collier
Format: Article
Language:English
Published: Wiley 2024-12-01
Series:Health Expectations
Subjects:
Online Access:https://doi.org/10.1111/hex.70089
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author Ann Dadich
Gregory Crawford
Peter Laintoll
Issac Zangre
Kamal Dahal
Dalia Albrezi
Cathie Jeffs
Aileen Collier
author_facet Ann Dadich
Gregory Crawford
Peter Laintoll
Issac Zangre
Kamal Dahal
Dalia Albrezi
Cathie Jeffs
Aileen Collier
author_sort Ann Dadich
collection DOAJ
description ABSTRACT Introduction Given longstanding barriers that obstruct integrated palliative care, particularly for culturally and linguistically diverse communities, this article demonstrates a way to engage with Syrian, Bhutanese and African communities to learn about brilliant palliative care with and from members of these communities. Methods This study involved the methodology of POSH‐VRE, which combines positive organisational scholarship in healthcare (POSH) with video‐reflexive ethnography (VRE). Members of the Syrian, Bhutanese, and African communities (n = 14) participated in a focus group or an interview to consider understandings of palliative care; conceptualisations of a good death; how and why palliative care was typically enacted in their communities; the associated effects; as well as the relationship between culturally and linguistically diverse communities and public palliative care services. Discussions were aided by video recordings captured during the previous study on brilliant palliative care, which participants were invited to review. Video recordings and transcripts of the focus groups and interview were analysed using reflexive thematic analysis. Results The participants demonstrated considerable variability in the ways that palliative care was understood and enacted. For some, death was a taboo topic, while for others, it was a reality that was required to face, particularly in war‐torn regions. Similarly, while doctors were held in high regard, participants held different views about how they should enact palliative care and the anticipation of death, particularly because family members were deemed to be a pivotal part of palliative care. To improve the care of people of culturally and linguistically diverse communities who experience a life‐limiting illness, participants highlighted three opportunities. These included the avoidance of generalisations, prioritising the needs and preferences of cultural groups, and leveraging the community network. Conclusion This study demonstrated how reciprocal understandings of palliative care were potentiated using POSH‐VRE. Specifically, the members of the Bhutanese, African and Syrian communities demonstrated diversity in the needs, preferences, and customs of culturally and linguistically diverse communities. As such, integrated palliative care is likely to be bolstered by relinquishing assumptions about how cultural groups wish to be referred to and cared for and adopting a public health approach to palliative care that embraces both a population‐based and person‐centred approach to care. Patient or Public Contribution Members of the Bhutanese, African and Syrian communities contributed to this study as participants and co‐researchers, contributing to the analysis and interpretation of the data and in the preparation of the article.
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spelling doaj-art-08b5036daabf4594ba5c8be42c7ac6612025-08-20T02:04:15ZengWileyHealth Expectations1369-65131369-76252024-12-01276n/an/a10.1111/hex.70089Engaging with Culturally and Linguistically Diverse Communities to Promote Palliative Care That Exceeds ExpectationAnn Dadich0Gregory Crawford1Peter Laintoll2Issac Zangre3Kamal Dahal4Dalia Albrezi5Cathie Jeffs6Aileen Collier7School of Business Western Sydney University Parramatta New South Wales AustraliaFaculty of Health and Medical Sciences Northern Adelaide Local Health Network University of Adelaide Adelaide South Australia AustraliaCommunity Member Adelaide South Australia AustraliaCommunity Member Adelaide South Australia AustraliaCommunity Member Adelaide South Australia AustraliaCommunity Member Adelaide South Australia AustraliaNorthern Adelaide Palliative Service Adelaide South Australia AustraliaCollege of Nursing and Health Sciences Flinders University Adelaide South Australia AustraliaABSTRACT Introduction Given longstanding barriers that obstruct integrated palliative care, particularly for culturally and linguistically diverse communities, this article demonstrates a way to engage with Syrian, Bhutanese and African communities to learn about brilliant palliative care with and from members of these communities. Methods This study involved the methodology of POSH‐VRE, which combines positive organisational scholarship in healthcare (POSH) with video‐reflexive ethnography (VRE). Members of the Syrian, Bhutanese, and African communities (n = 14) participated in a focus group or an interview to consider understandings of palliative care; conceptualisations of a good death; how and why palliative care was typically enacted in their communities; the associated effects; as well as the relationship between culturally and linguistically diverse communities and public palliative care services. Discussions were aided by video recordings captured during the previous study on brilliant palliative care, which participants were invited to review. Video recordings and transcripts of the focus groups and interview were analysed using reflexive thematic analysis. Results The participants demonstrated considerable variability in the ways that palliative care was understood and enacted. For some, death was a taboo topic, while for others, it was a reality that was required to face, particularly in war‐torn regions. Similarly, while doctors were held in high regard, participants held different views about how they should enact palliative care and the anticipation of death, particularly because family members were deemed to be a pivotal part of palliative care. To improve the care of people of culturally and linguistically diverse communities who experience a life‐limiting illness, participants highlighted three opportunities. These included the avoidance of generalisations, prioritising the needs and preferences of cultural groups, and leveraging the community network. Conclusion This study demonstrated how reciprocal understandings of palliative care were potentiated using POSH‐VRE. Specifically, the members of the Bhutanese, African and Syrian communities demonstrated diversity in the needs, preferences, and customs of culturally and linguistically diverse communities. As such, integrated palliative care is likely to be bolstered by relinquishing assumptions about how cultural groups wish to be referred to and cared for and adopting a public health approach to palliative care that embraces both a population‐based and person‐centred approach to care. Patient or Public Contribution Members of the Bhutanese, African and Syrian communities contributed to this study as participants and co‐researchers, contributing to the analysis and interpretation of the data and in the preparation of the article.https://doi.org/10.1111/hex.70089brilliant careculturally and linguistically diverse communitiesdeathend‐of‐life careknowledge translationpalliative care
spellingShingle Ann Dadich
Gregory Crawford
Peter Laintoll
Issac Zangre
Kamal Dahal
Dalia Albrezi
Cathie Jeffs
Aileen Collier
Engaging with Culturally and Linguistically Diverse Communities to Promote Palliative Care That Exceeds Expectation
Health Expectations
brilliant care
culturally and linguistically diverse communities
death
end‐of‐life care
knowledge translation
palliative care
title Engaging with Culturally and Linguistically Diverse Communities to Promote Palliative Care That Exceeds Expectation
title_full Engaging with Culturally and Linguistically Diverse Communities to Promote Palliative Care That Exceeds Expectation
title_fullStr Engaging with Culturally and Linguistically Diverse Communities to Promote Palliative Care That Exceeds Expectation
title_full_unstemmed Engaging with Culturally and Linguistically Diverse Communities to Promote Palliative Care That Exceeds Expectation
title_short Engaging with Culturally and Linguistically Diverse Communities to Promote Palliative Care That Exceeds Expectation
title_sort engaging with culturally and linguistically diverse communities to promote palliative care that exceeds expectation
topic brilliant care
culturally and linguistically diverse communities
death
end‐of‐life care
knowledge translation
palliative care
url https://doi.org/10.1111/hex.70089
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