University Library
  • Login
A gateway to Melbourne's research publications
Minerva Access is the University's Institutional Repository. It aims to collect, preserve, and showcase the intellectual output of staff and students of the University of Melbourne for a global audience.
View Item 
  • Minerva Access
  • Medicine, Dentistry & Health Sciences
  • Melbourne School of Population and Global Health
  • Melbourne School of Population and Global Health - Research Publications
  • View Item
  • Minerva Access
  • Medicine, Dentistry & Health Sciences
  • Melbourne School of Population and Global Health
  • Melbourne School of Population and Global Health - Research Publications
  • View Item
JavaScript is disabled for your browser. Some features of this site may not work without it.

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

    Thumbnail
    Download
    published version (725.5Kb)

    Citations
    Altmetric
    Author
    Elsum, I; Massey, L; McEwan, C; LaGrappe, D; Kowal, E; Savarirayan, R; Baynam, G; Jenkins, M; Garvey, G; Kelaher, M
    Date
    2020-10-29
    Source Title
    PLoS One
    Publisher
    PUBLIC LIBRARY SCIENCE
    University of Melbourne Author/s
    Kelaher, Margaret; Savarirayan, Ravi; Jenkins, Misty-Rayna; Elsum, Imogen
    Affiliation
    Melbourne School of Population and Global Health
    Paediatrics (RCH)
    Medical Biology (W.E.H.I.)
    Metadata
    Show full item record
    Document Type
    Journal Article
    Citations
    Elsum, I., Massey, L., McEwan, C., LaGrappe, D., Kowal, E., Savarirayan, R., Baynam, G., Jenkins, M., Garvey, G. & Kelaher, M. (2020). A community-based co-designed genetic health service model for Aboriginal Australians. PLOS ONE, 15 (10), https://doi.org/10.1371/journal.pone.0239765.
    Access Status
    Open Access
    URI
    http://hdl.handle.net/11343/251751
    DOI
    10.1371/journal.pone.0239765
    Open Access at PMC
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7595342
    Abstract
    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.

    Export Reference in RIS Format     

    Endnote

    • Click on "Export Reference in RIS Format" and choose "open with... Endnote".

    Refworks

    • Click on "Export Reference in RIS Format". Login to Refworks, go to References => Import References


    Collections
    • Minerva Elements Records [52443]
    • Medical Biology - Research Publications [1412]
    • Paediatrics (RCH) - Research Publications [2383]
    • Melbourne School of Population and Global Health - Research Publications [5315]
    Minerva AccessDepositing Your Work (for University of Melbourne Staff and Students)NewsFAQs

    BrowseCommunities & CollectionsBy Issue DateAuthorsTitlesSubjectsThis CollectionBy Issue DateAuthorsTitlesSubjects
    My AccountLoginRegister
    StatisticsMost Popular ItemsStatistics by CountryMost Popular Authors