Dataset Information

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

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.

SUBMITTER: Elsum I

PROVIDER: S-EPMC7595342 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Elsum Imogen I Massey Libby L McEwan Callum C LaGrappe Desiree D Kowal Emma E Savarirayan Ravi R Baynam Gareth G Jenkins Misty M Garvey Gail G Kelaher Margaret M

PloS one 20201029 10

<h4>Background</h4>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.<h4 ...[more]

PMID: 33119636

Similar Datasets

Project description:BackgroundMobile clinics have been implemented in diverse clinical and geographical settings to provide proximal health care for specific populations. Primary health care mobile clinics have been implemented widely for Indigenous populations, with a paucity of research evaluations around service delivery models internationally. To redress factors impeding service accessibility for Aboriginal and Torres Strait Islander Peoples, Budja Budja Aboriginal Cooperative (Aboriginal Community Controlled Health Organisation located in a small rural town in Victoria, Australia), developed and implemented the Tulku wan Wininn primary health mobile clinic.MethodsA qualitative process evaluation methodology was used to explore contextual factors mediating the implementation of the mobile clinic, including the acceptability of the service to health service personnel, external key informants, and Aboriginal and/or Torres Strait Islander clients. A synthesis of international ethical guidelines, (Consolidated Criteria for strengthening reporting of health research involving Indigenous peoples (CONSIDER statement), was prospectively applied to shape the study design and research process. Semi-structured interviews were conducted with participants. Data collection occurred from July 2019 to October 2021. Inductive thematic data analysis was undertaken concurrently with data collection.ResultsData was collected from 19 participants which included 12 health service personnel and key informants, and 7 Aboriginal clients. In total, data from 22 interviews were included as interviews with three clients were undertaken twice. Four themes were developed: considerations for early implementation, maintaining face-to-face services during COVID-19, acceptability as a model of service delivery, and maintaining the mobile clinic as a service delivery model.ConclusionEvidence supporting the acceptability of a primary health care mobile clinic for Aboriginal Peoples residing in rural Victoria is provided. Despite the experience of early implementation challenges and adaptations, the mobile clinic addressed known transport and cultural barriers to accessing primary health care services. In the context of COVID-19 lockdowns, the mobile clinic was valued for the provision of face-to-face care for Aboriginal clients. Key issues for maintaining the mobile clinic include health workforce and funding. Findings are of value to other organizations seeking to implement a primary health mobile clinic service delivery model to redress barriers to accessibility experienced by the communities they serve.

Dataset Information

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

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets