Indigenous experiences and underutilisation of disability support services in Australia: a qualitative meta-synthesis

Figures & data

Figure 1. PRISMA flowchart of search strategy.

PRISMA flow chart for the identification of 11 studies included in the final literature review data set.

Table 1. Search terms used in the literature search.

Search Term	Variations
Aboriginal and Torres Strait Islander People	Aborigin^a Torres Strait Island* First nations Indigenous Indigenous Australia^a
Disability	Physical disability Intellectual disability Special needs
Support service	National Disability Insurance Scheme NDIS Community service Health service Welfare service Government service
Experience	Engagement Incident Encounter Appointment

Table 2. Summary of the included literature.

Author(s), year, country	Aim	Data collection method	Support service	Participants	Key findings	CASP
[21] Australia	To describe the needs of people and carers of people with disability and how service providers support these needs.	Individual or group interviews of people with a disability (n = 37), carers (n = 28) and service providers (n = 47)	Disability, health and community service organisations in remote and very remote regions of NT, WA and SA.	Aboriginal people with a disability. Carers and service providers of Aboriginal people with a disability.	This study identified the need for service providers to understand Aboriginal culture, and the importance of being connected to the Lands and family, sharing together and working together.	100
[17] Australia	To ascertain the factors involved in accessing services and support for Aboriginal children with a disability.	Focus group interviews of Aboriginal carers (n = 5), and service providers (n = 17).	Government and non-government funded disability, health, and social service organisations	Carers and service providers of Aboriginal children with a disability.	Providers and carers identified lack of awareness and availability of support, as well as racism and cultural barriers as factors impacting on quality of service.	80%
[23] Australia	To better understand the experiences and needs of carers of Aboriginal children with a disability.	Interviews of parents or primary carers (n = 19).	Paediatric clinic in a suburban area near a capital city in eastern Australia.	Parents or primary carers of Aboriginal children aged 0-8 with a disability.	The ability of providers to streamline services and mitigate costs were identified as facilitators to accessing care. Financial strain and social isolation were particularly prominent for lone carers.	100%
[26] Australia	To identify good communication facets in disability services.	Interviews with staff (n = 4), NDIS participants (n = 24), support providers (n = 19), and community connectors (n-8)	Disability, health and community service organisations in north and far north QLD.	Government and non-government disability service providers and Aboriginal people with a disability.	Identifies low cultural competence in the assessment and planning of care leading to confusion and distrust amongst clients of the services.	80%
[7] Australia	To identify factors that influence the participation of Aboriginal people in disability services.	Focus groups and individual interviews of Aboriginal (n = 7) and non-Aboriginal (n = 57) paid employees	One Aboriginal community-controlled organisation and one generic disability service provider in a metropolitan region of NSW.	Non-government disability service providers and paid disability service workers.	Identifies historical, social, and institutional factors which influence participation in disability services. Strategies to improve engagement include addressing racism and the economic, health and educational consequences of colonisation.	80%
[6] Australia	To describe the carer journey of accessing support and services.	Interviews of parents or primary carers (n = 19).	Child development clinic at a metropolitan area Aboriginal health service.	Parents or primary carers of Aboriginal children aged 0-8 with a disability.	This study identified multiple access barriers to carers accessing services for children with a disability, including lack of education, information and awareness, socio-economic disadvantage and marginalisation.	100%
[15] Australia	To explore Aboriginal carers experiences of interactions with health, social, and education providers in accessing services and support for their child with disability.	Interviews of female carers (n = 19)	An Australian metropolitan Aboriginal community-controlled health service.	Carers of Aboriginal children with a disability.	Carers reported experiences of marginalization and a lack of empowerment during interactions with providers due to cultural stereotypes and racism, lack of cultural awareness and sensitivity, and poverty and homelessness.	100%
[24] Australia	To explore the experience of families of urban-dwelling Aboriginal children with disability from the service providers’ perspective.	Interviews of service providers (n = 24)	Mainstream disability service centres identified though the health service early childhood intervention contact lists.	Providers with experience providing services to Aboriginal children with a disability and their families.	This study identified the importance of having a good relationship between the service provider and the family to build trust and enable ongoing service provision.	100%
[24] Australia	To inform ways to improve access to services for families of urban-dwelling Aboriginal children with disability from the service providers’ perspective.	Interviews of service providers (n = 24)	Mainstream disability service centres identified though the health service early childhood intervention contact lists.	Providers with experience providing services to Aboriginal children with a disability and their families.	Identified the need for providers to enact culturally sensitive and meaningful engagement to better understand families’ needs and preferences for support, and the need for providers to develop their understanding of family contexts.	100%
[22] Australia	To examine the lived experience of Aboriginal people with a disability.	Ethnographic observation, interviews, engagement with centre members, and home visits to three Aboriginal women.	An Aboriginal respite centre located in Brisbane, QLD.	Aboriginal people with a disability.	Study suggests that Indigenous people with a disability experience their disability within the context of their Indigenous identity. Author identifies a conflict between the Indigenous nature of the services and operating according to government procedures and guidelines.	80%
[25] Australia	To explore the lived experience of Aboriginal people with a disability.	Interviews of people with a disability (n = 28) and family members.	Specialist disability non-government organisation in the West Kimberley region. WA.	Aboriginal people with a disability.	This study focuses on the services provided to Aboriginal people living in very remote regions and the resultant stigmatisation, inequality and discrimination that people who utilise disability services experience.	80%

Note: Aboriginal = Aboriginal and Torres Strait Islander person; NT = Northern Territory; WA = Western Australia; SA = South Australia; NSW = New South Wales; QLD = Queensland.

Figure 2. Conceptual framework for the provision of disability support services for indigenous Australians.

Conceptual framework wheel for the provision of disability support services for indigenous Australians. Inner themes include History Matters, Delivery of Effective Services, Cultural Understanding of Disability Care and Limitations to Current Service Provision.

Table 3. Summary of emerging concepts.

Fourth-order constructs	Third-order constructs	Second-order constructs (original themes)	Description of first- and second-order constructs	Source
History Matters	A history of mistrust	History of colonisation	Experiences of colonisation, the stolen generation, and generational trauma still influence client interactions with providers.	[24]
		View of providers is a product of prior experience	One negative experience can prevent future engagement with service providers.	[15]
		Historical inconsistency of services	Services can be seen as tokenistic when only short-term care is provided.	[21]
	Acknowledgement of harms and wrongdoings	Long-term effects of trauma	Providers need to understand the historical influences on their clients perception of services.	[7]
		Changed diet and lifestyle	Colonisation coincided with changes to lifestyle which contributed to disability.	[22]
Cultural Understanding of Disability Care	Cultural considerations	Recognising culture Cultural competency	Some Aboriginal and Torres Strait Islander people do not trust others to care for their children. Care of children is seen as the responsibility of kin and family.	[23]
		Need for non-judgemental care	Carers have to navigate a complicated system to access services. Concern for confidentiality in small communities.	[17]
		Importance of kin and community	Some clients prefer to seek help from within their own community.	[15]
	Perception of disability	Western understanding of disability Biomedical model	Identity of being Aboriginal is foremost, being disabled is secondary. Indigenous concept of disability differs to Western definition.	[22]
		Connection to country Intersection of identity and disability	Community acts as protective factor to negative experience of disability. Connection to country supersedes disability.	[21]
Limitations to Current Service Provision	Access barriers	Interorganisational communication	Lack of communication between organisations can hinder engagement.	[24]
		Cost of services	Secondary costs to service engagement include transport, childcare and respite.	[6]
		Pity and superiority of providers	Clients report that racism is recurring and systemic rather than an isolated occurrence.	[15]
		Racism, stigma and prejudice	Despite efforts to educate providers, clients still report experiences of stigma and stereotyped prejudice.	[17]
	Compromising culture	Conforming to Western definition of disability	Dissonance between the advice of medical practitioners and Elders.	[6]
		Time is perceived differently Funding and policy requirements	Providers need to be aware of cultural differences and how they can accommodate these within the parameters of existing policy and regulations.	[21]
Delivery of Effective Services	Linking services	Recounting my story	Continuous turnover of staff inhibits rapport with clients.	[21]
		Information has not been passed on	Lack of consistent providers requires clients to repeat their personal information multiple times.	[24]
		A confusing system to navigate	Clients report complex and difficult service pathways	[17]
		Consultation is essential	There is opportunity for services to be improved by provision of a caseworker. Non-Aboriginal providers would benefit from cultural mentoring and training	[24]
	Communication matters	The words you use, matter Lack of respect	Communication needs to be a two-way street.	[7]
		Clear communication	Communication needs to be clear and culturally appropriate.	[26]
		Sorry business Culturally appropriate services	There is dissonance between provider expectations and client cultural needs.	[21]
		Need to listen to clients concerns	Clients do not feel heard or listened to.	[25]
		Rigid diagnostic criteria	The language used by providers does not align with Aboriginal cultural understanding of disability.	[17]

Note: Aboriginal: Aboriginal and Torres Strait Islander person.

DiGiacomo M, Green A, Delaney P, et al. Experiences and needs of carers of Aboriginal children with a disability: a qualitative study. BMC Fam Pract. 2017;18(1):96.

 PubMedGoogle Scholar

Ferdinand A, Massey L, Cullen J, et al. Culturally competent communication in indigenous disability assessment: a qualitative study. Int J Equity Health. 2021;20(1):1–12.

 PubMed Web of Science ®Google Scholar

Gilroy J, Donelly M, Colmar S. Twelve factors that can influence the participation of Aboriginal people in disability services. Australian Indigenous Health Bulletin. 2016;16(1):1–10.

 Google Scholar

Green A, Abbott P, Delaney P, et al. Navigating the journey of Aboriginal childhood disability: a qualitative study of carers’ interface with services. BMC Health Serv Res. 2016;16(1):680.

 PubMedGoogle Scholar

Green A, Abbott P, Davidson PM, et al. Interacting with providers: an intersectional exploration of the experiences of carers of Aboriginal children with a disability. Qual Health Res. 2018;28(12):1923–1932.

 PubMed Web of Science ®Google Scholar

Green A, Abbott P, Luckett T, et al. Collaborating across sectors to provide early intervention for Aboriginal and Torres Strait Islander children with disability and their families: a qualitative study of provider perspectives. J Interprof Care. 2020;34(3):388–399.

 PubMed Web of Science ®Google Scholar

King JA, Brough M, Knox M. Negotiating disability and colonisation: the lived experience of indigenous Australians with a disability. Disability & Society. 2014;29(5):738–750.

 Web of Science ®Google Scholar

Soldatic K, Somers K, Spurway K, et al. Emplacing indigeneity and rurality in neoliberal disability welfare reform: the lived experience of aboriginal people with disabilities in the West Kimberley, Australia. Environ Plan A. 2017;49(10):2342–2361.

 Web of Science ®Google Scholar

Dew A, Barton R, Gilroy J, et al. Importance of land, family and culture for a good life: remote Aboriginal people with disability and carers. Aust. J. Soc. Issues. 2020;55(4):418–438.

 Web of Science ®Google Scholar

DiGiacomo M, Delaney P, Abbott P, et al. Doing the hard yards’: carer and provider focus group perspectives of accessing Aboriginal childhood disability services. BMC Health Serv Res. 2013;13:326.

 PubMed Web of Science ®Google Scholar