title: Navigating the journey of Aboriginal childhood disability: a qualitative study of carers' interface with services.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: University of Technology Sydney, Center for Cardiovascular and Chronic Care, Faculty of Health, PO Box 123, Broadway, Sydney, NSW, 2007, Australia.
authors.forename: Anna
authors.initials: A
authors.lastname: Green
authors.affiliation: Western Sydney University, Locked Bag 1797, Penrith, NSW, 1797, Australia. P.Abbott@westernsydney.edu.au.
authors.forename: Penelope
authors.identifier: 0000-0003-4865-4823
authors.initials: P
authors.lastname: Abbott
authors.affiliation: University of Technology Sydney, Center for Cardiovascular and Chronic Care, Faculty of Health, PO Box 123, Broadway, Sydney, NSW, 2007, Australia.
authors.forename: Patricia
authors.initials: P
authors.lastname: Delaney
authors.affiliation: Western Sydney University, Blacktown Mt Druitt Hospital, Western Sydney Local Health District, Blacktown Road, Blacktown, NSW, 2148, Australia.
authors.forename: Patrick
authors.initials: P
authors.lastname: Patradoon-Ho
authors.affiliation: University of Technology Sydney, Center for Cardiovascular and Chronic Care, Faculty of Health, PO Box 123, Broadway, Sydney, NSW, 2007, Australia.
authors.forename: John
authors.initials: J
authors.lastname: Delaney
authors.affiliation: University of Technology Sydney, Center for Cardiovascular and Chronic Care, Faculty of Health, Johns Hopkins University, School of Nursing, 525 N. Wolfe Street, Baltimore, MD, 21205, USA.
authors.forename: Patricia Mary
authors.initials: PM
authors.lastname: Davidson
authors.affiliation: University of Technology Sydney, Center for Cardiovascular and Chronic Care, Faculty of Health, PO Box 123, Broadway, Sydney, NSW, 2007, Australia.
authors.forename: Michelle
authors.initials: M
authors.lastname: DiGiacomo
mesh_terms: D017028:Caregivers / Q000706:statistics & numerical data; D002648:Child; D002675:Child, Preschool; D019988:Children with Disabilities / Q000534:rehabilitation / Q000706:statistics & numerical data*; D005260:Female; D006297:Health Services Accessibility / Q000592:standards* / Q000706:statistics & numerical data; D006303:Health Services, Indigenous / Q000592:standards* / Q000706:statistics & numerical data; D054625:Healthcare Disparities; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D010342:Patient Acceptance of Health Care; D036301:Qualitative Research; D011793:Queensland / Q000208:ethnology; D012111:Residence Characteristics; D000095283:Australian Aboriginal and Torres Strait Islander Peoples
keywords: Aboriginal and Torres Strait Islander; Carer; Childhood; Disability; Service pathway