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

Green, Anna ORCID: and Abbott, Penelope and Delaney, Patricia and Patradoon-Ho, Patrick and Delaney, John and 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):680. pp. 1-11.

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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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Item Type: Article (Commonwealth Reporting Category C)
Refereed: Yes
Item Status: Live Archive
Faculty/School / Institute/Centre: No Faculty
Faculty/School / Institute/Centre: No Faculty
Date Deposited: 15 Jul 2022 04:58
Last Modified: 17 Jul 2022 23:34
Uncontrolled Keywords: Aboriginal and Torres Strait Islander; Carer; Childhood; Disability; Service pathway
Fields of Research (2020): 42 HEALTH SCIENCES > 4203 Health services and systems > 420305 Health and community services
Identification Number or DOI:

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