"It doesn't exist…": negotiating palliative care from a culturally and linguistically diverse patient and caregiver perspective.

Kirby, E; Lwin, Z; Kenny, K; Broom, A; Birman, H; Good, P

"It doesn't exist…": negotiating palliative care from a culturally and linguistically diverse patient and caregiver perspective.

Kirby, E Lwin, Z Kenny, K Broom, A Birman, H Good, P

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Publisher:: Springer Science and Business Media LLC
Publication Type:: Journal Article
Citation:: BMC Palliat Care, 2018, 17, (1), pp. 90
Issue Date:: 2018-07-02

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Field	Value	Language
dc.contributor.author	Kirby, E
dc.contributor.author	Lwin, Z
dc.contributor.author	Kenny, K
dc.contributor.author	Broom, A
dc.contributor.author	Birman, H
dc.contributor.author	Good, P https://orcid.org/0000-0002-8198-0375
dc.date.accessioned	2022-09-12T00:55:40Z
dc.date.available	2018-06-19
dc.date.available	2022-09-12T00:55:40Z
dc.date.issued	2018-07-02
dc.identifier.citation	BMC Palliat Care, 2018, 17, (1), pp. 90
dc.identifier.issn	1472-684X
dc.identifier.issn	1472-684X
dc.identifier.uri	http://hdl.handle.net/10453/161727
dc.description.abstract	BACKGROUND: The end of life represents a therapeutic context that acutely raises cultural and linguistic specificities, yet there is very little evidence illustrating the importance of such dynamics in shaping choices, trajectories and care practices. Culture and language interplay to offer considerable potential challenges to both patient and provider, with further work needed to explore patient and caregiver perspectives across cultures and linguistic groups, and provider perspectives. The objective of this study was to develop a critical, evidence-based understanding of the experiences of people from Culturally and Linguistically Diverse (CALD) backgrounds, and their caregivers, in a palliative care setting. METHODS: A qualitative study, using semi-structured interviews to explore key experiences and perspectives of CALD patients and caregivers currently undergoing treatment under oncology or palliative care specialists in two Australian hospitals. Interviews were digitally audio recorded and transcribed in full. A thematic analysis was conducted utilising the framework approach. RESULTS: Sixteen patients and fourteen caregivers from a range of CALD backgrounds participated in semi-structured interviews. The research identified four prevalent themes among participants: (1) Terminology in the transition to palliative care; (2) Communication, culture and pain management; (3) (Not) Talking about death and dying; and, (4) Religious faith as a coping strategy: challenging the terminal diagnosis. CONCLUSIONS: CALD patients and caregivers' experiences are multifaceted, particularly in negotiating linguistic difficulties, beliefs about treatment, and issues related to death and dying. Greater attention is needed to develop effective communication skills, recognise CALD patients' particular cultural, linguistic and spiritual values and needs, and acknowledge the unique nature of each doctor-patient interaction.
dc.format	Electronic
dc.language	eng
dc.publisher	Springer Science and Business Media LLC
dc.relation	http://purl.org/au-research/grants/arc/LP120200268
dc.relation.ispartof	BMC Palliat Care
dc.relation.isbasedon	10.1186/s12904-018-0343-z
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	1110 Nursing, 1117 Public Health and Health Services
dc.subject.classification	Gerontology
dc.subject.mesh	Adult
dc.subject.mesh	Aged
dc.subject.mesh	Aged, 80 and over
dc.subject.mesh	Australia
dc.subject.mesh	Caregivers
dc.subject.mesh	Culturally Competent Care
dc.subject.mesh	Female
dc.subject.mesh	Focus Groups
dc.subject.mesh	Humans
dc.subject.mesh	Interviews as Topic
dc.subject.mesh	Male
dc.subject.mesh	Middle Aged
dc.subject.mesh	Palliative Care
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Humans
dc.subject.mesh	Palliative Care
dc.subject.mesh	Focus Groups
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Adult
dc.subject.mesh	Aged
dc.subject.mesh	Aged, 80 and over
dc.subject.mesh	Middle Aged
dc.subject.mesh	Caregivers
dc.subject.mesh	Australia
dc.subject.mesh	Female
dc.subject.mesh	Male
dc.subject.mesh	Interviews as Topic
dc.subject.mesh	Culturally Competent Care
dc.title	"It doesn't exist…": negotiating palliative care from a culturally and linguistically diverse patient and caregiver perspective.
dc.type	Journal Article
utslib.citation.volume	17
utslib.location.activity	England
utslib.for	1110 Nursing
utslib.for	1117 Public Health and Health Services
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/IMPACCT
utslib.copyright.status	open_access	*
dc.date.updated	2022-09-12T00:55:37Z
pubs.issue	1
pubs.publication-status	Published online
pubs.volume	17
utslib.citation.issue	1

Abstract:

BACKGROUND: The end of life represents a therapeutic context that acutely raises cultural and linguistic specificities, yet there is very little evidence illustrating the importance of such dynamics in shaping choices, trajectories and care practices. Culture and language interplay to offer considerable potential challenges to both patient and provider, with further work needed to explore patient and caregiver perspectives across cultures and linguistic groups, and provider perspectives. The objective of this study was to develop a critical, evidence-based understanding of the experiences of people from Culturally and Linguistically Diverse (CALD) backgrounds, and their caregivers, in a palliative care setting. METHODS: A qualitative study, using semi-structured interviews to explore key experiences and perspectives of CALD patients and caregivers currently undergoing treatment under oncology or palliative care specialists in two Australian hospitals. Interviews were digitally audio recorded and transcribed in full. A thematic analysis was conducted utilising the framework approach. RESULTS: Sixteen patients and fourteen caregivers from a range of CALD backgrounds participated in semi-structured interviews. The research identified four prevalent themes among participants: (1) Terminology in the transition to palliative care; (2) Communication, culture and pain management; (3) (Not) Talking about death and dying; and, (4) Religious faith as a coping strategy: challenging the terminal diagnosis. CONCLUSIONS: CALD patients and caregivers' experiences are multifaceted, particularly in negotiating linguistic difficulties, beliefs about treatment, and issues related to death and dying. Greater attention is needed to develop effective communication skills, recognise CALD patients' particular cultural, linguistic and spiritual values and needs, and acknowledge the unique nature of each doctor-patient interaction.

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http://hdl.handle.net/10453/161727