Closing Gaps: Strength-Based Approaches to Research with Aboriginal Children with Neurodevelopmental Disorders

Pietro, Nina Di; Illes, Judy

doi:10.1007/s12152-016-9281-8

Cited by 23 publications

(18 citation statements)

References 16 publications

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“…This skewed research in only one area of neurodevelopmental disorders can be highly stigmatizing. 16 To date, no other systematic review examining community engagement in Indigenous health research has been identified, although we are…”

Section: Improving Health Research Among Indigenous Peoples In Canadamentioning

confidence: 98%

Improving health research among Indigenous Peoples in Canada

Hyett

Marjerrison

Gabel

2018

CMAJ

126

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Section: Improving Health Research Among Indigenous Peoples In Canadamentioning

confidence: 98%

Improving health research among Indigenous Peoples in Canada

Hyett

Marjerrison

Gabel

2018

CMAJ

126

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“…Cappiello and Gahagan (2009) provided an overview of the research on Indigenous people with disabilities in communities around the globe, and Chan et al (2016) reported on Indigenous and non-Indigenous communities in Taiwan. Participants in the Di Pietro and Illes (2016) study were health care workers involved in supporting Indigenous Canadians with disabilities, including autism and cerebral palsy. Bevan-Brown (2013) revisited three previous studies in an investigation focusing on Māori (Aotearoa/New Zealand) people with disabilities, including autism.…”

Section: Resultsmentioning

confidence: 99%

Indigenous Australians with autism: A scoping review

Bailey

Arciuli

2020

Autism

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Aboriginal and Torres Strait Islander people with autism spectrum disorder, used interchangeably with the term autism, are among the most marginalised people in Australian society. This review maps out existing and emerging themes in the research involving Indigenous Australians with autism based on a search of the peer-reviewed and grey literature. Our search identified 1457 potentially relevant publications. Of these, 19 publications met our inclusion criteria and focused on autism spectrum disorder diagnosis and prevalence, as well as carer and service provider perspectives on autism, and autism support services for Indigenous Australians. We were able to access 17 publications: 12 journal articles, 3 conference presentations, 1 resource booklet and 1 dissertation. Findings suggest similar prevalence rates for autism among Indigenous and non-Indigenous Australians, although some Aboriginal and Torres Strait Islander people with autism may not receive a diagnosis or may be misdiagnosed. Research on the perspectives of Aboriginal and Torres Strait Islander carers and Indigenous and non-Indigenous service providers is discussed in relation to Indigenous perspectives on autism, as well as barriers and strategies to improve access to diagnosis and support services. Although not the focus of our review, we briefly mention studies of Indigenous people with autism in countries other than Australia. Lay Abstract Aboriginal and Torres Strait Islander people with developmental disabilities such as autism are among the most marginalised people in Australian society. We reviewed research involving Indigenous Australians with autism based on a search of the peer-reviewed and grey literature. Our search identified 1457 potentially relevant publications. Of these, 19 publications were in line with our main areas of inquiry: autism spectrum disorder diagnosis and prevalence, carer and service provider perspectives on autism, and autism support services. These included 12 journal publications, 3 conference presentations, 1 resource booklet and 1 thesis dissertation. Findings suggest similar prevalence rates for autism among Indigenous and non-Indigenous Australians, although some Aboriginal and Torres Strait Islander people with autism may not receive a diagnosis or may be misdiagnosed. We also discuss research on the perspectives of Aboriginal and Torres Strait Islander carers and Indigenous and non-Indigenous service providers, as well as barriers and strategies for improving access to diagnosis and support services.

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“…Adopting a CBPR approach in this research may help to minimise obstacles that inhibit Indigenous people’s engagement in and utilisation of such programs. In Australia, major barriers to participation in research include the difficulties in accessing a diagnosis and difficulties in building trust with researchers [ 80 ]. Researchers can build trust and accountability by adhering to the guidelines for ethical research with Indigenous communities and investing the time to build reciprocal relationships with Indigenous people [ 81 – 83 ].…”

Section: Discussionmentioning

confidence: 99%

Psychosocial resources developed and trialled for Indigenous people with autism spectrum disorder and their caregivers: a systematic review and catalogue

Shochet

Orr

Kelly

et al. 2020

Int J Equity Health

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Background: People with autism spectrum disorder (ASD) face many psychosocial challenges throughout life, highlighting the need for programs and resources promoting psychosocial wellbeing. Indigenous peoples with ASD and/or other neurodevelopmental disorders must overcome cultural and social barriers to access such supports. This study aimed to identify psychosocial programs and resources developed worldwide for this population by systematically reviewing research evaluating programs aiming to promote the psychosocial wellbeing of this population and/or their caregivers; and collating and reviewing resources developed to promote their psychosocial wellbeing. Methods: Searches were last conducted in December 2019. The systematic review searched 28 electronic databases, and 25 electronic databases were searched for resources promoting psychosocial wellbeing. Additional published and unpublished studies were identified from relevant reviews, authors of eligible articles, and experts working in Indigenous Health. Articles and resources were screened for inclusion using pre-defined criteria. Articles included in the systematic review were assessed for quality using the Mixed Methods Assessment Tool. The diversity and paucity of outcomes reported precluded pooling of study findings for meta-analysis. Results: Seven articles situated in the USA (2), Canada (3) and Australia (2); and eleven resources developed in Australia (9), Canada (1) and New Zealand (1) met inclusion criteria. All articles showed some promising findings for improving psychosocial wellbeing for Indigenous children with ASD and/or another neurodevelopmental disorder, and 5 of 7 evaluated the cultural adaptation of an existing evidence-based program for an Indigenous population. However, methodological quality was moderate or low (57% and 43% of articles respectively) and no studies had adult participants. The psychosocial wellbeing supports provided by the 11 resources included psychoeducation, community support, and services/workshops.

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Closing Gaps: Strength-Based Approaches to Research with Aboriginal Children with Neurodevelopmental Disorders

Cited by 23 publications

References 16 publications

Improving health research among Indigenous Peoples in Canada

Improving health research among Indigenous Peoples in Canada

Indigenous Australians with autism: A scoping review

Psychosocial resources developed and trialled for Indigenous people with autism spectrum disorder and their caregivers: a systematic review and catalogue

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