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A community-based co-designed genetic health service model for Aboriginal Australians

Elsum, Imogen, Massey, Libby, McEwan, Callum, LaGrappe, Desiree, Kowal, Emma, Savarirayan, Ravi, Baynam, Gareth, Jenkins, Misty, Garvey, Gail and Kelaher, Margaret 2020, A community-based co-designed genetic health service model for Aboriginal Australians, PLoS ONE, vol. 15, no. 10, pp. 1-19, doi: 10.1371/journal.pone.0239765.

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Title A community-based co-designed genetic health service model for Aboriginal Australians
Author(s) Elsum, Imogen
Massey, Libby
McEwan, Callum
LaGrappe, Desiree
Kowal, EmmaORCID iD for Kowal, Emma orcid.org/0000-0003-3866-3224
Savarirayan, Ravi
Baynam, Gareth
Jenkins, Misty
Garvey, Gail
Kelaher, Margaret
Journal name PLoS ONE
Volume number 15
Issue number 10
Article ID e0239765
Start page 1
End page 19
Total pages 19
Publisher Public Library of Science
Place of publication San Francisco, Calif.
Publication date 2020-10
ISSN 1932-6203
1932-6203
Summary Background


Aboriginal and Torres Strait Islander people experience a greater burden of disease and die younger than non-Indigenous Australians, with Aboriginal people living in remote areas of the Northern Territory of Australia having the lowest life expectancy estimates. Despite a high burden of chronic disease among Aboriginal and Torres Strait Islander people, access to specialist health services remains low and models of care that increase engagement, may improve health outcomes.
Methods

We describe client and staff perspectives of a model of clinical genetics services provided by the MJD Foundation (MJDF) in geographically and culturally complex contexts within the Northern Territory of Australia. We seek to understand the MJDF model’s success in supporting Aboriginal families with the familial, neurodegenerative condition Machado-Joseph disease and how it could be applied in the provision of other specialist services. Thematic analysis was undertaken on semi-structured interviews with primary health care staff (n = 2), Non-Aboriginal MJDF Staff (n = 7) and Aboriginal MJDF Clients / Community workers (n = 13).
Results

Four key themes regarding the MJDF model of service delivery were identified with the service being; 1) client led 2) accepting of various understandings of genetic disease causation 3) focused on relationships, continuity and trust between the service provider and the clients, and 4) committed to incorporating an inclusive whole-of-family practice. The MJDF model takes a community-based, person-and family-centred approach to successfully deliver effective specialist genetic health services in remote community settings. We propose that these approaches have broad application in the future design and delivery of specialist health services particularly in culturally complex settings.
Language eng
DOI 10.1371/journal.pone.0239765
Indigenous content off
Field of Research 160104 Social and Cultural Anthropology
HERDC Research category C1 Refereed article in a scholarly journal
Free to Read? Yes
Persistent URL http://hdl.handle.net/10536/DRO/DU:30145307

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Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au.