Navigating the journey of Aboriginal childhood disability: a qualitative study of carers' interface with services

Green, A; Abbott, P; Delaney, P; Patradoon-Ho, P; Delaney, J; Davidson, PM; DiGiacomo, M

Navigating the journey of Aboriginal childhood disability: a qualitative study of carers' interface with services

Green, A

Abbott, P Delaney, P Patradoon-Ho, P Delaney, J Davidson, PM DiGiacomo, M

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Publication Type:: Journal Article
Citation:: BMC health services research, 2016, 16 (1), pp. 680 - ?
Issue Date:: 2016-12-01

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Field	Value	Language
dc.contributor.author	Green, A https://orcid.org/0000-0002-7541-3665	en_US
dc.contributor.author	Abbott, P	en_US
dc.contributor.author	Delaney, P	en_US
dc.contributor.author	Patradoon-Ho, P	en_US
dc.contributor.author	Delaney, J	en_US
dc.contributor.author	Davidson, PM	en_US
dc.contributor.author	DiGiacomo, M https://orcid.org/0000-0001-5484-8224	en_US
dc.date.issued	2016-12-01	en_US
dc.identifier.citation	BMC health services research, 2016, 16 (1), pp. 680 - ?	en_US
dc.identifier.uri	http://hdl.handle.net/10453/126774
dc.description.abstract	BACKGROUND: The disadvantage experienced by Aboriginal and Torres Strait Islander children with a disability is well recognized. The long term consequences of failing to address disability on health, education and employment underlies the importance of early intervention. Caregivers experience a disproportionate burden and have challenges accessing services. The aim of this study was to describe the carer journey of accessing support and services.METHODS: We conducted in-depth semi-structured interviews with nineteen parents and carers of Aboriginal children aged 0-8 years. The children were patients at a child developmental clinic at a metropolitan area Aboriginal health service in Eastern Australia. Interpretive phenomenological analysis was applied to transcribed verbatim accounts.RESULTS: Four themes were developed using the 'journey' metaphor to describe the carer pathway of accessing support and services at the community, service and policy levels. Themes included 1) the need for increased signage within communities via community education, information and awareness, 2) wrong way signs, roundabouts and roadblocks encountered when accessing services, 3) alternate routes can facilitate the journey, and 4) incompatibility of inflexible bureaucratic road rules and lived realities.CONCLUSIONS: The challenges of caring for a child with a disability are indisputable and these can be compounded for people experiencing socio-economic disadvantage and marginalisation. Overcoming challenges to service access faced by carers of Aboriginal children with a disability will require investment in community, services and policy to tailor culturally appropriate models of care.	en_US
dc.relation.ispartof	BMC health services research	en_US
dc.subject.classification	Health Policy & Services	en_US
dc.title	Navigating the journey of Aboriginal childhood disability: a qualitative study of carers' interface with services	en_US
dc.type	Journal Article
utslib.citation.volume	1	en_US
utslib.citation.volume	16	en_US
utslib.for	1117 Public Health And Health Services	en_US
utslib.for	0807 Library And Information Studies	en_US
pubs.embargo.period	Not known	en_US
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
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Research Centres
utslib.copyright.status	open_access
pubs.issue	1	en_US
pubs.publication-status	Published	en_US
pubs.volume	16	en_US

Abstract:

BACKGROUND: The disadvantage experienced by Aboriginal and Torres Strait Islander children with a disability is well recognized. The long term consequences of failing to address disability on health, education and employment underlies the importance of early intervention. Caregivers experience a disproportionate burden and have challenges accessing services. The aim of this study was to describe the carer journey of accessing support and services.METHODS: We conducted in-depth semi-structured interviews with nineteen parents and carers of Aboriginal children aged 0-8 years. The children were patients at a child developmental clinic at a metropolitan area Aboriginal health service in Eastern Australia. Interpretive phenomenological analysis was applied to transcribed verbatim accounts.RESULTS: Four themes were developed using the 'journey' metaphor to describe the carer pathway of accessing support and services at the community, service and policy levels. Themes included 1) the need for increased signage within communities via community education, information and awareness, 2) wrong way signs, roundabouts and roadblocks encountered when accessing services, 3) alternate routes can facilitate the journey, and 4) incompatibility of inflexible bureaucratic road rules and lived realities.CONCLUSIONS: The challenges of caring for a child with a disability are indisputable and these can be compounded for people experiencing socio-economic disadvantage and marginalisation. Overcoming challenges to service access faced by carers of Aboriginal children with a disability will require investment in community, services and policy to tailor culturally appropriate models of care.

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http://hdl.handle.net/10453/126774