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

Article


Green, Anna, Abbott, Penelope, Delaney, Patricia, Patradoon-Ho, Patrick, Delaney, John, Davidson, Patricia Mary and DiGiacomo, Michelle. 2016. "Navigating the journey of Aboriginal childhood disability: a qualitative study of carers' interface with services." BMC Health Services Research. 16 (1), pp. 1-11. https://doi.org/10.1186/s12913-016-1926-0
Article Title

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

ERA Journal ID13444
Article CategoryArticle
AuthorsGreen, Anna (Author), Abbott, Penelope (Author), Delaney, Patricia (Author), Patradoon-Ho, Patrick (Author), Delaney, John (Author), Davidson, Patricia Mary (Author) and DiGiacomo, Michelle (Author)
Journal TitleBMC Health Services Research
Journal Citation16 (1), pp. 1-11
Article Number680
Number of Pages11
Year2016
PublisherBioMed Central Ltd.
Place of PublicationUnited Kingdom
ISSN1472-6963
Digital Object Identifier (DOI)https://doi.org/10.1186/s12913-016-1926-0
Web Address (URL)https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-016-1926-0
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.

KeywordsAboriginal and Torres Strait Islander; Carer; Childhood; Disability; Service pathway
ANZSRC Field of Research 2020420305. Health and community services
Byline AffiliationsUniversity of Technology Sydney
Western Sydney University
Institution of OriginUniversity of Southern Queensland
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