The experience of structural burden for culturally and linguistically diverse family carers of people living with dementia in Australia.

Gilbert, AS; Antoniades, J; Croy, S; Thodis, A; Adams, J; Goeman, D; Browning, C; Kent, M; Ellis, K; Brijnath, B

The experience of structural burden for culturally and linguistically diverse family carers of people living with dementia in Australia.

Gilbert, AS Antoniades, J Croy, S Thodis, A Adams, J

Goeman, D Browning, C Kent, M Ellis, K Brijnath, B

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Publisher:: WILEY
Publication Type:: Journal Article
Citation:: Health Soc Care Community, 2022
Issue Date:: 2022-05-22

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Field	Value	Language
dc.contributor.author	Gilbert, AS
dc.contributor.author	Antoniades, J
dc.contributor.author	Croy, S
dc.contributor.author	Thodis, A
dc.contributor.author	Adams, J https://orcid.org/0000-0002-9901-5717
dc.contributor.author	Goeman, D
dc.contributor.author	Browning, C
dc.contributor.author	Kent, M
dc.contributor.author	Ellis, K
dc.contributor.author	Brijnath, B
dc.date.accessioned	2022-12-01T22:41:14Z
dc.date.available	2022-05-05
dc.date.available	2022-12-01T22:41:14Z
dc.date.issued	2022-05-22
dc.identifier.citation	Health Soc Care Community, 2022
dc.identifier.issn	0966-0410
dc.identifier.issn	1365-2524
dc.identifier.uri	http://hdl.handle.net/10453/164019
dc.description.abstract	Evidence suggests that family carers of culturally and linguistically diverse (CALD) people living with dementia experience higher stress and unmet need than the general Australian population. These disparities are often framed as the result of CALD communities failing to seek formal support. Challenging this, we draw on the concept of 'structural burden' to explore how the complexity of health and aged systems contribute to the burden that CALD carers experience. We conducted semi-structured interviews with 104 family carers for CALD people with dementia in Australia, followed by thematic analysis of transcripts. Additional to structural burdens encountered by the general older population, CALD carers faced challenges understanding Australia's Anglo-centric aged care system, locating culturally appropriate care and were required to translate the languages and operations of health and aged care systems into terms their family members understood. This burden was mitigated by the presence of ethno-specific organisations and other navigation support. Australia's aged care system has moved towards centralised governance and consumer-directed care provision. This system involves a confusing array of different programmes and levels, bureaucratic applications and long waiting times. Carers' encounters with these systems demonstrates how some CALD people are being left behind by the current aged care system. While ethno-specific services can reduce this burden, not all CALD groups are represented. Consequently, improving access to dementia care among CALD populations requires entry point and navigation support that is culturally appropriate and linguistically accessible.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	WILEY
dc.relation	http://purl.org/au-research/grants/arc/FT140100195
dc.relation.ispartof	Health Soc Care Community
dc.relation.isbasedon	10.1111/hsc.13853
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	1117 Public Health and Health Services, 1607 Social Work
dc.subject.classification	Nursing
dc.title	The experience of structural burden for culturally and linguistically diverse family carers of people living with dementia in Australia.
dc.type	Journal Article
utslib.location.activity	England
utslib.for	1117 Public Health and Health Services
utslib.for	1607 Social Work
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Strength - CHSP - Health Services and Practice
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Public Health
pubs.organisational-group	/University of Technology Sydney/Strength - ARCCIM - Australian Research Centre in Complementary & Integrative Medicine
utslib.copyright.status	open_access	*
dc.date.updated	2022-12-01T22:41:13Z
pubs.publication-status	Published online

Abstract:

Evidence suggests that family carers of culturally and linguistically diverse (CALD) people living with dementia experience higher stress and unmet need than the general Australian population. These disparities are often framed as the result of CALD communities failing to seek formal support. Challenging this, we draw on the concept of 'structural burden' to explore how the complexity of health and aged systems contribute to the burden that CALD carers experience. We conducted semi-structured interviews with 104 family carers for CALD people with dementia in Australia, followed by thematic analysis of transcripts. Additional to structural burdens encountered by the general older population, CALD carers faced challenges understanding Australia's Anglo-centric aged care system, locating culturally appropriate care and were required to translate the languages and operations of health and aged care systems into terms their family members understood. This burden was mitigated by the presence of ethno-specific organisations and other navigation support. Australia's aged care system has moved towards centralised governance and consumer-directed care provision. This system involves a confusing array of different programmes and levels, bureaucratic applications and long waiting times. Carers' encounters with these systems demonstrates how some CALD people are being left behind by the current aged care system. While ethno-specific services can reduce this burden, not all CALD groups are represented. Consequently, improving access to dementia care among CALD populations requires entry point and navigation support that is culturally appropriate and linguistically accessible.

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http://hdl.handle.net/10453/164019