Lowitja Institute:: Browsing by Author "Kowal E."

Browsing by Author "Kowal E."

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A community-based co-designed genetic health service model for Aboriginal Australians.
(2021-01-15) Elsum I.; Massey L.; McEwan C.; LaGrappe D.; Kowal E.; Savarirayan R.; Baynam G.; Jenkins M.; Garvey G.; Kelaher M.
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.Copyright © 2020 Elsum et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
A postcolonial analysis of Indigenous cultural awareness training for health workers.
Downing R.; Kowal E.
Indigenous cultural training for health workers is an increasingly popular intervention designed to improve the health services provided to Indigenous peoples in Australia. The provision of this training is based on the recognition that the measured discrepancy between Indigenous and non-Indigenous health outcomes is in part influenced by cultural difference and a history of racism in Australian society. Indigenous cultural training in Australia predominantly draws on a 'cultural awareness' framework which seeks to educate health workers about 'Indigenous culture'. To date, evaluations of Indigenous cultural training programs have found them to have questionable efficacy, although most of these evaluations have been methodologically inadequate. This article draws on postcolonial theory to explore the limitations of Indigenous cultural training as it is commonly conceptualised. Issues of essentialising 'Indigenous culture', 'otherness' and the absence of systemic responsibility for culturally appropriate health service provision are discussed. Finally, we consider future directions for Indigenous cultural training that are useful to both Indigenous service users and the health workers charged with 'closing the gap' between Indigenous and non-Indigenous health outcomes. (PsycInfo Database Record (c) 2021 APA, all rights reserved)
Genetic research and Aboriginal and Torres Strait Islander Australians.
(2014-03-10) Kowal E.; Pearson G.; Peacock C.S.; Jamieson S.E.; Blackwell J.M.
While human genetic research promises to deliver a range of health benefits to the population, genetic research that takes place in Indigenous communities has proven controversial. Indigenous peoples have raised concerns, including a lack of benefit to their communities, a diversion of attention and resources from non-genetic causes of health disparities and racism in health care, a reinforcement of "victim-blaming" approaches to health inequalities, and possible misuse of blood and tissue samples. Drawing on the international literature, this article reviews the ethical issues relevant to genetic research in Indigenous populations and considers how some of these have been negotiated in a genomic research project currently under way in a remote Aboriginal community. We consider how the different levels of Indigenous research governance operating in Australia impacted on the research project and discuss whether specific guidelines for the conduct of genetic research in Aboriginal and Torres Strait Islander communities are warranted. © 2012 Springer Science+Business Media B.V.
Indigenous blood and ethical regimes in the United States and Australia since the 1960s.
Radin J.; Kowal E.
Blood samples collected from members of Indigenous communities in the mid-20th century by scientists interested in human variation remain frozen today in institutional repositories around the world. This article focuses on two such collections-one established and maintained in the United States and the other in Australia. Through historical and ethnographic analysis, we show how scientific knowledge about the human species and ethical knowledge about human experimentation are coproduced differently in each national context over time. Through a series of vignettes, we trace the attempts of scientists and Indigenous people to assemble and reassemble blood samples, ethical regimes, human biological knowledge, and personhood. In including ourselves-a U.S. historian of science and an Australian anthropologist-in the narrative, we show how humanistic and social scientific analysis contributes to ongoing efforts to maintain Indigenous samples. (PsycInfo Database Record (c) 2021 APA, all rights reserved)
Indigenous cultural training for health workers in Australia.
(20110526) Downing R.; Kowal E.; Paradies Y.
Purpose: Culturally inappropriate health services contribute to persistent health inequalities. This article reviews approaches to Indigenous cultural training for health workers and assesses how effectively they have been translated into training programmes within Australia. Data sources: CINAHL PLUS, MEDLINE, Wiley InterScience, ATSIHealth and ProQuest. Study selection: The review focuses on the conceptual and empirical literature on Indigenous cultural training for health workers within selected settler-colonial countries, together with published evaluations of such training programmes in Australia. Data extraction: Information on conceptual models underpinning training was extracted descriptively. Details of authors, year, area of investigation, participant group, evaluation method and relevant findings were extracted from published evaluations. Results of data synthesis: Six models relevant to cultural training were located and organized into a conceptual schema ('cultural competence, transcultural care, cultural safety, cultural awareness, cultural security and cultural respect'). Indigenous cultural training in Australia is most commonly based on a 'cultural awareness' model. Nine published evaluations of Australian Indigenous cultural training programmes for health workers were located. Of the three studies that assessed change at multiple points in time, two found positive changes. However, the only study to include a control group found no effect. Conclusion(s): This review shows that the evidence for the effectiveness of Indigenous cultural training programmes in Australia is poor. Critiques of cultural training from Indigenous and non-Indigenous scholars suggest that a 'cultural safety' model may offer the most potential to improve the effectiveness of health services for Indigenous Australians. ©The Author 2011. Published by Oxford University Press in association with the International Society for Quality in Health Care; all rights reserved.
Indigenous genetics and rare diseases: harmony, diversity and equity.
(2017-12-22) Baynam G.; Molster C.; Bauskis A.; Kowal E.; Savarirayan R.; Kelaher M.; Easteal S.; Massey L.; Garvey G.; Goldblatt J.; Pachter N.; Weeramanthri T.S.; Dawkins H.J.S.
Advances in our understanding of genetic and rare diseases are changing the face of healthcare. Crucially, the global community must implement these advances equitably to reduce health disparities, including between Indigenous and non-Indigenous peoples. We take an Australian perspective to illustrate some key areas that are fundamental to the equitable translation of new knowledge for the improved diagnosis of genetic and rare diseases for Indigenous people. Specifically, we focus on inequalities in access to clinical genetics services and the lack of genetic and phenomic reference data to inform diagnoses. We provide examples of ways in which these inequities are being addressed through Australian partnerships to support a harmonious and inclusive approach to ensure that benefits from traditional wisdom, community knowledge and shared experiences are interwoven to support and inform implementation of new knowledge from genomics and precision public health. This will serve to deliver benefits to all of our diverse citizens, including Indigenous populations.Copyright © Springer International Publishing AG 2017.
Investigating disparity in access to Australian clinical genetic health services for Aboriginal and Torres Strait Islander people.
(2022-09-06) Luke J.; Dalach P.; Tuer L.; Savarirayan R.; Ferdinand A.; McGaughran J.; Kowal E.; Massey L.; Garvey G.; Dawkins H.; Jenkins M.; Paradies Y.; Pearson G.; Stutterd C.A.; Baynam G.; Kelaher M.
Globally, there is a recognised need that all populations should be able to access the benefits of genomics and precision medicine. However, achieving this remains constrained by a paucity of data that quantifies access to clinical genomics, particularly amongst Indigenous populations. Using administrative data from clinical genetic health services across three Australian jurisdictions (states/territories), we investigate disparities in the scheduling and attendance of appointments among Aboriginal and/or Torres Strait Islander people, compared to non-Indigenous people. For 14,870 appointments scheduled between 2014-2018, adjusted Multivariate Poisson Regression models revealed that Aboriginal and/or Torres Strait Islander people were scheduled fewer appointments (IRR 0.73 [0.68-0.80], <0.001) and attended at lower rates (IRR 0.85 [0.78-0.93], <0.001). Within this population, adults, females, remote residents, and those presenting in relation to cancer or prenatal indications experienced the greatest disparity in access. These results provide important baseline data related to disparities in access to clinical genomics in Australia.Copyright © 2022, The Author(s).
Putting Indigenous cultural training into nursing practice.
(2011-09-01) Downing R.; Kowal E.
The provision of Indigenous cultural training for non-Indigenous health workers has been widely promoted as a method of improving health service provision to 'close the gap' in Indigenous health. However, in the absence of strong evidence, the power of Indigenous cultural training to meaningfully contribute to the health of Aboriginal and Torres Strait Islander peoples remains questionable. This research explored how six hospital-based nurses consider the role of Indigenous cultural training and the impact it has had on their practice through individual semi-structured interviews. Thematic analysis revealed the significance of individual professionals' attitudes in determining the impact of Indigenous cultural training, as well as the need for institutional support to assist in translating Indigenous cultural training into practice. Utilising post-colonial theory, two key findings emerge. First, the way in which Indigenous cultural training conceptualises 'identity' and 'culture' is critical to its ultimate outcomes. Second, deficits in institutional support limit the efficacy of Indigenous cultural training by placing the onus for institutional change on the shoulders of individual health workers.
"This is my boy's health! Talk straight to me!" Perspectives on accessible and culturally safe care among Aboriginal and Torres Strait Islander patients of clinical genetics services.
(2021-05-06) Dalach P.; Savarirayan R.; Baynam G.; McGaughran J.; Kowal E.; Massey L.; Jenkins M.; Paradies Y.; Kelaher M.
Background: Aboriginal and Torres Strait Islander people do not enjoy equal access to specialist health services that adequately meet their needs. Clinical genetics services are at the vanguard of realising the health benefits of genomic medicine. As the field continues to expand in clinical utility and implementation, it is critical that Aboriginal and Torres Strait Islander people are able to participate and benefit equally to avoid further widening of the existing health gap. This is the first study to explore barriers to accessing clinical genetics services among Aboriginal and Torres Strait Islander people, which has been acknowledged as a key strategic priority in Australian genomic health policy. Method(s): A participatory design process engaged a majority-Aboriginal Project Reference Group and Aboriginal End-User Group. 63 semi-structured interviews were conducted with Aboriginal and/or Torres Strait Islander people who had accessed the government-funded clinical genetics service in Western Australia, Queensland or the Northern Territory between 2014 and 2018. The sample included patients, parents and carers. Participants were asked to recount their 'patient journey', from referral through to post-appointment and reflect on their perceptions of genetics and its implications for the health of themselves and their families. Analysis tracked chronological service engagement, followed by an inductive thematic approach. Result(s): Barriers to access and engagement were present at each stage of the patient journey. These included challenges in obtaining a referral, long waiting periods, limited genetic literacy, absence of Aboriginal support services, communication challenges and lack of adequate psychosocial support and follow-up after attendance. Participants' overall experiences of attending a genetic health service were varied, with positive perceptions tied closely to a diagnosis being achieved. The experience of (and expectation for) recognition of cultural identity and provision of culturally safe care was low among participants. Unaddressed concerns continued to cause significant distress in some people years after their appointment took place. Conclusion(s): There is significant scope for improving the care provided to Aboriginal and Torres Strait Islander people at clinical genetics services. Immediate attention to minimising logistical barriers, developing relationships with Aboriginal Community Controlled Health Services and providing practical and specific cultural safety training for practitioners is required at the service-level. Our findings strongly support the development of guidelines or policies recognising the collective cultural needs of Aboriginal and Torres Strait Islander people in relation to genomic health care.Copyright © 2021, The Author(s).
To be or not to be Indigenous? Understanding the rise of Australia's Indigenous population since 1971.
Watt E.; Kowal E.
In the past half century, the Indigenous Australian population has grown at a far faster rate than can be explained by births alone, and has come to include more western-educated people living in the south-east of the country. Demographers attribute much of this growth to people identifying as Indigenous later in life. Social research has examined the phenomenon of "New Identifiers" in the United States and Canada, where similar shifts in Indigenous populations have been observed. This paper is the first to examine the issue in an Australian context. We analyse 33 interviews with people who have come to believe they have Indigenous Australian ancestry later in life, and identify factors that encourage members of this group to subsequently identify as Indigenous, or discourage them from doing so. (PsycInfo Database Record (c) 2021 APA, all rights reserved)

Browsing by Author "Kowal E."

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