Experiences and needs of carers of Aboriginal children with a disability: A qualitative study

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

Experiences and needs of carers of Aboriginal children with a disability: A qualitative study

DiGiacomo, M

Green, A

Delaney, P Delaney, J Patradoon-Ho, P Davidson, PM

Abbott, P

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Publication Type:: Journal Article
Citation:: BMC Family Practice, 2017, 18 (1)
Issue Date:: 2017-11-29

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Field	Value	Language
dc.contributor.author	DiGiacomo, M https://orcid.org/0000-0001-5484-8224	en_US
dc.contributor.author	Green, A https://orcid.org/0000-0002-7541-3665	en_US
dc.contributor.author	Delaney, P	en_US
dc.contributor.author	Delaney, J	en_US
dc.contributor.author	Patradoon-Ho, P	en_US
dc.contributor.author	Davidson, PM https://orcid.org/0000-0003-2050-1534	en_US
dc.contributor.author	Abbott, P https://orcid.org/0000-0003-4865-4823	en_US
dc.date.available	2017-10-24	en_US
dc.date.issued	2017-11-29	en_US
dc.identifier.citation	BMC Family Practice, 2017, 18 (1)	en_US
dc.identifier.uri	http://hdl.handle.net/10453/123398
dc.description.abstract	© 2017 The Author(s). Background: Australian parents/carers of a person with a disability experience higher rates of depression, more financial stress, and are twice as likely to be in poor physical health than the general population. Aboriginal and Torres Strait Islander peoples experience worse health, social and economic outcomes than other Australians, and those with a disability face 'double disadvantage'. This study aimed to better understand the experiences and needs of parents/carers/families of Aboriginal children with a disability. Methods: Semi-structured in-depth interviews were conducted with parents or primary carers of Aboriginal children aged zero-eight with disability. Interviews were analysed using thematic analysis. Results: Nineteen women (sixteen mothers and three grandmothers) were interviewed. More than half were lone carers (without a partner or spouse). Participants described their experiences, including challenges and facilitators, to providing and accessing care, impacts on their health and wellbeing, and associated economic and non-economic costs of caregiving. Financial strain and social isolation was particularly prominent for lone carers. Conclusions: Tailoring services to the needs of carers of Aboriginal children with a disability means supporting kinship caregiving, facilitating engagement with other Aboriginal families, and streamlining services and systems to mitigate costs. The experiences described by our participants depict an intersection of race, socio-economic status, gender, disability, and caregiving. Services and funding initiatives should incorporate such intersecting determinants in planning and delivery of holistic care.	en_US
dc.relation	http://purl.org/au-research/grants/arc/LP120200484
dc.relation.ispartof	BMC Family Practice	en_US
dc.relation.isbasedon	10.1186/s12875-017-0668-3	en_US
dc.subject.classification	Public Health	en_US
dc.subject.mesh	Humans	en_US
dc.subject.mesh	Rehabilitation	en_US
dc.subject.mesh	Single Parent	en_US
dc.subject.mesh	Siblings	en_US
dc.subject.mesh	Qualitative Research	en_US
dc.subject.mesh	Cost of Illness	en_US
dc.subject.mesh	Social Support	en_US
dc.subject.mesh	Child	en_US
dc.subject.mesh	Caregivers	en_US
dc.subject.mesh	Disabled Children	en_US
dc.subject.mesh	Oceanic Ancestry Group	en_US
dc.subject.mesh	Australia	en_US
dc.subject.mesh	Female	en_US
dc.subject.mesh	Male	en_US
dc.subject.mesh	Interviews as Topic	en_US
dc.title	Experiences and needs of carers of Aboriginal children with a disability: A qualitative study	en_US
dc.type	Journal Article
utslib.citation.volume	1	en_US
utslib.citation.volume	18	en_US
utslib.for	1117 Public Health and Health Services	en_US
utslib.for	1110 Nursing	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/Nursing
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	18	en_US

Abstract:

© 2017 The Author(s). Background: Australian parents/carers of a person with a disability experience higher rates of depression, more financial stress, and are twice as likely to be in poor physical health than the general population. Aboriginal and Torres Strait Islander peoples experience worse health, social and economic outcomes than other Australians, and those with a disability face 'double disadvantage'. This study aimed to better understand the experiences and needs of parents/carers/families of Aboriginal children with a disability. Methods: Semi-structured in-depth interviews were conducted with parents or primary carers of Aboriginal children aged zero-eight with disability. Interviews were analysed using thematic analysis. Results: Nineteen women (sixteen mothers and three grandmothers) were interviewed. More than half were lone carers (without a partner or spouse). Participants described their experiences, including challenges and facilitators, to providing and accessing care, impacts on their health and wellbeing, and associated economic and non-economic costs of caregiving. Financial strain and social isolation was particularly prominent for lone carers. Conclusions: Tailoring services to the needs of carers of Aboriginal children with a disability means supporting kinship caregiving, facilitating engagement with other Aboriginal families, and streamlining services and systems to mitigate costs. The experiences described by our participants depict an intersection of race, socio-economic status, gender, disability, and caregiving. Services and funding initiatives should incorporate such intersecting determinants in planning and delivery of holistic care.

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http://hdl.handle.net/10453/123398