Abstract
BackgroundAboriginal 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.MethodsWe 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).ResultsFour 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.
Highlights
Whilst individually rare, the 6–10,000 known rare monogenic disorders make these genetic diseases collectively common
We describe client and staff perspectives of a model of clinical genetics services provided by the Machado-Joseph disease (MJD) Foundation (MJDF) in geographically and culturally complex contexts within the Northern Territory of Australia
This study demonstrates that the model is oriented to person- and family- centred care and brings together key principles from the cultural safety literature, namely the existence of shared respect and knowledge between MJDF as the service provider, and the clients as the recipients, to overcome cultural power imbalances and provide an environment where clients feel safe and secure in their identity, culture and community whilst accessing services
Summary
The 6–10,000 known rare monogenic disorders make these genetic diseases collectively common. Despite demand [6, 7] their overall utilisation of specialist services is 43% lower than for other Australians [8] This lower utilisation reflects in part the challenges faced accessing specialist services in remote areas where a greater proportion of the population is Aboriginal [9]. Specialist services, such as genetic services predominantly operate within urban hospital settings and remote patients are frequently required to travel long distances to access these services and there is chronic underutilisation of outreach programs [9]. 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
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