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Development of a National Aboriginal and Torres Strait Islander Cancer Framework: A Shared Process to Guide Effective Policy and Practice.

ABSTRACT: Indigenous Australians experience a substantially higher cancer mortality rate than non-Indigenous Australians. While cancer outcomes are improving for non-Indigenous Australians, they are worsening for Indigenous Australians. Reducing this disparity requires evidence-based and culturally-appropriate guidance. The purpose of this paper is to describe an initiative by Cancer Australia and Menzies School of Health Research (Menzies) to develop Australia’s first National Aboriginal and Torres Strait Islander Cancer Framework using a process of co-design with relevant stakeholders. The initiative was guided by three core principles: achieving policy-relevant evidence-based outcomes; engaging and maintaining trust with Indigenous Australians at every phase; and employing best-practice and appropriate research methods. Four components of research comprised the Framework development: evidence review; multifaceted stakeholder consultation and input; triangulation of findings; and direct stakeholder input in drafting and refining the Framework. The evidence review confirmed the increasing burden of cancer on Indigenous Australians, while stakeholder consultations facilitated comprehensive input from those with lived experience. The consultations revealed issues not identified in existing literature, and gave different emphases of priority, thus reinforcing the value of including stakeholder perspectives. This paper focuses primarily on documenting the methods used; findings are presented only in order to illustrate the results of the process. The published Framework is available at www.canceraustralia.gov.au; further description and analyses of findings from the consultations will be published elsewhere. The logistics inherent in large-scale consultation are considerable. However, the quality of data and the foundation for sustained partnership with stakeholders and knowledge translation vastly outweighed the challenges. The process of wide-ranging stakeholder consultation described in this paper offers a model for other areas of national and international Indigenous priority setting and policy and practice development that meets the needs of those most affected. The Framework, through the establishment of an agreed, shared and evidence-based agenda, provides guidance for jurisdictional cancer plans, optimal care pathways, and program and service planning for the multiple players across all levels of the health system.

SUBMITTER: Brands J

PROVIDER: S-EPMC5981981 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Background For Aboriginal and Torres Strait Islander peoples, culture is foundational to health and wellbeing. However, its inherent conceptual complexity and diversity across and within different Aboriginal and Torres Strait Islander cultural groups means that it has rarely been explored in depth by epidemiological research. As a result, there are very few measures which adequately represent the heterogeneity and importance of Aboriginal and Torres Strait Islander cultures for health and wellbeing. Tools grounded in the social determinants of health are mostly based on European academic opinion about what constitutes culture and wellbeing, and the views of Indigenous peoples are rarely included. Mayi Kuwayu, the National Study of Aboriginal and Torres Strait Islander Wellbeing, developed a new survey tool based on health and wellbeing as perceived by Aboriginal and Torres Strait Islander people. This paper describes several of the key processes used to identify cultural domains and develop questionnaire items for the survey tool, reflecting the importance of culture to Aboriginal and Torres Strait Islander peoples. Methods Focus groups were conducted at community organisations and conferences with Aboriginal and Torres Strait Islander people. These sessions were aimed at identifying key cultural domains to be addressed by the Mayi Kuwayu questionnaire and to field test drafts of the questionnaire, which were then modified according to focus group feedback and expert input. Results Extensive community consultations allowed us to identify key cultural domains, generate questionnaire items, and test initial content validity. The six overarching cultural domains identified during the development of the Mayi Kuwayu questionnaire were: Connection to Country; Beliefs and knowledge; Language; Family, kinship, and community; Cultural expression and continuity; and Self-determination and leadership. Conclusions The processes used by Mayi Kuwayu have generated meaningful cultural items for use in Aboriginal and Torres Strait Islander health and wellbeing research. Further assessment of these processes, including a comparison with best practice guidelines and psychometric testing of the items and scales developed, will be conducted in a future program of work. Supplementary Information The online version contains supplementary material available at 10.1186/s12939-022-01710-8.

Project description:BackgroundUnderstanding normative retinal thickness characteristics is critical for diagnosis and monitoring of pathology, particularly in those predisposed to retinal disease. The macular retinal layer thickness of Australian Aboriginal and/or Torres Strait Islander children was examined using spectral-domain optical coherence tomography.MethodsHigh-resolution macular optical coherence tomography imaging was performed on 100 Aboriginal and/or Torres Strait Islander children and 150 non-Indigenous visually healthy children aged 4-18 years. The imaging protocol included a 6-line radial scan centred on the fovea. Images were segmented using semi-automated software to derive thickness of the total retina, inner and outer retina, and individual retinal layers across the macular region. Repeated measures ANOVAs examined variations in thickness associated with retinal region, age, gender and Indigenous status.ResultsRetinal thickness showed significant topographical variations (p < 0.01), being thinnest in the foveal zone, and thickest in the parafovea. The retina of Aboriginal and/or Torres Strait Islander children was significantly thinner than non-Indigenous children in the foveal (p < 0.001), parafoveal (p = 0.002), and perifoveal zones (p = 0.01), with the greatest difference in the foveal zone (mean difference: 14.2 μm). Inner retinal thickness was also thinner in Aboriginal and/or Torres Strait Islander children compared to non-Indigenous children in the parafoveal zone (p < 0.001), and outer retinal thickness was thinner in the foveal (p < 0.001) and perifoveal zone (p < 0.001). Retinal thickness was also significantly greater in males than females (p < 0.001) and showed a statistically significant positive association with age (p = 0.01).ConclusionThere are significant differences in macular retinal thickness between Aboriginal and/or Torres Strait Islander children and non-Indigenous children, which has implications for interpreting optical coherence tomography data and may relate to risk of macula disease in this population.

Project description:BackgroundLiver disease and hepatocellular carcinoma (HCC) are important contributors to the mortality gap between Indigenous and non-Indigenous Australians. However, there is a lack of population based high quality data assessing the differences in HCC epidemiology and outcomes according to Indigenous status. The aim of this study was therefore to perform a large epidemiological study of HCC investigating differences between Indigenous and non-Indigenous Australians with HCC.MethodsStudy design was a retrospective cohort study. Data linkage methodology was used to link data from cancer registries with hospital separation summaries across three Australian jurisdictions during 2000-2017. Cumulative survival (Kaplan-Meier) and the differences in survival (Multivariable Cox-regression) by Indigenous status were assessed.FindingsA total of 229 Indigenous and 3587 non-Indigenous HCC cases were included in the analyses. Significant epidemiological differences identified for Indigenous HCC cases included younger age at onset, higher proportion of females, higher rurality, lower socioeconomic status, and higher comorbidity burden (all p < 0.001). The distribution of cofactors was also significantly different for Indigenous Australians including higher prevalence of alcohol misuse, hepatitis B, and diabetes and more frequent presence of multiple HCC cofactors (all p < 0.001). Indigenous Australians received curative HCC therapies less frequently (6.6% vs. 14.5%, p < 0.001) and had poorer 5-year survival (10.0% vs. 17.3%, p < 0.001; unadjusted hazard ratio (HR) =1.42 96%CI 1.21-1.65) compared to non-Indigenous Australians. The strength of the association between indigenous status and survival was weaker and statistically non-significant after adjusting for rurality, comorbidity burden and lack of curative therapy (adjusted-HR=1.20 95%CI 0.97-1.47).InterpretationSuch data provide a call to action to help design and implement health literacy, liver management and HCC surveillance programs for Indigenous people to help close the liver cancer mortality gap.

Project description:BackgroundThere is growing global evidence on the adoption and effectiveness of eHealth (including mobile health and telehealth) by First Nation peoples including Aboriginal and Torres Strait Islander people. Although there are frameworks to guide eHealth development, implementation, and evaluation, it is unknown whether they adequately encapsulate the health, cultural, and community-related priorities of Aboriginal and Torres Strait Islander people.ObjectiveThe aim of this research program is to prepare a best practice framework that will guide the co-design, implementation, and evaluation of culturally safe eHealth interventions within existing models of health care for Aboriginal and Torres Strait Islander people. The framework will be a synthesis of evidence that represents best practices in eHealth, as determined by Aboriginal and Torres Strait Islander people.MethodsResearch activities to develop the best practice framework will occur in stepped but overlapping qualitative research phases with governance from an existing multiagency research collaboration (the Collaboration). The research protocol has been informed by key research frameworks such as the SPIRIT (Standard Protocol Items: Recommendations for Interventional Trials) and Developers of Health Research Reporting Guidelines. The seven phases of research will include the following: systematic literature review, scoping review, theme development, theme consultation, Delphi processes for expert reviews, and dissemination.ResultsMembers of the Collaboration conceived this research program in August 2020, and a draft was produced in June 2021 with subsequent funding obtained in July 2021. The Collaboration approved the protocol in December 2021. Results for several research phases of the best practice framework development are expected by January 2023, commencing with the systematic literature review and the scoping review.ConclusionsThe research program outlined in this protocol is a timely response to the growing number of eHealth interventions with Aboriginal and Torres Strait Islander people. A best practice framework is needed to guide the rigorous development and evaluation of eHealth innovations to promote genuine co-design and ensure cultural safety and clinical effectiveness for Aboriginal and Torres Strait Islander people.International registered report identifier (irrid)DERR1-10.2196/34904.

Project description:BackgroundLeave events are a public health concern resulting in poorer health outcomes. In Australia, leave events disproportionally impact Aboriginal and Torres Strait Islander people. A systematic review was conducted to explore the causes of leave events among Aboriginal and Torres Strait Islander people and strategies to reduce them.MethodsA systematic review was conducted using Medline, Web of Science, Embase and Informit, a database with a strong focus on relevant Australian content. Additionally, we examined the references of the records included, and performed a manual search using Google, Google scholar and the Australia's National Institute for Aboriginal and Torres Strait Islander Health Research. Two independent reviewers screened the records. One author extracted the data and a second author reviewed it. To appraise the quality of the studies the Mixed Methods Appraisal Tool was used as well as the Aboriginal and Torres Strait Islander Quality Appraisal Tool. A narrative synthesis was used to report quantitative findings and an inductive thematic analysis for qualitative studies and reports.ResultsWe located 421 records. Ten records met eligibility criteria and were included in the systematic review. From those, four were quantitative studies, three were qualitative studies and three reports. Five records studied data from the Northern Territory, two from Western Australia, two from New South Whales and one from Queensland. The quantitative studies focused on the characteristics of the patients and found associations between leave events and male gender, age younger than 45 years and town camp residency. Qualitative findings yielded more in depth causes of leave events evidencing that they are associated with health care quality gaps. There were multiple strategies suggested to reduce leave events through adapting health care service delivery. Aboriginal and Torres Strait Islander representation is needed in a variety of roles within health care provision and during decision-making.ConclusionThis systematic review found that multiple gaps within Australian health care delivery are associated with leave events among Aboriginal and Torres Strait Islander people. The findings suggest that reducing leave events requires better representation of Aboriginal and Torres Strait Islander people within the health workforce. In addition, partnership with Aboriginal and Torres Strait Islander people is needed during the decision-making process in providing health services that meet Aboriginal and Torres Strait Islander cultural needs.

Project description:BackgroundLittle is known about the wellbeing and aspirations of Aboriginal and Torres Strait Islander peoples living in social housing. Aboriginal and Torres Strait Islander peoples living in social housing face common social housing challenges of low income, higher incidence of mental health issues and poorer health along with specific challenges due to the impacts of colonisation and its ongoing manifestations in racism and inequity. A greater understanding of social and emotional wellbeing needs and aspirations is essential in informing the provision of appropriate support.MethodsSurveys of social and emotional wellbeing (SEWB) were completed by 95 Aboriginal people aged 16 years and older living in Aboriginal Housing Victoria social housing in 2021. The survey addressed a range of domains reflecting social and emotional wellbeing, as defined by Aboriginal and Torres Strait Islander peoples.ResultsMost respondents demonstrated a strong sense of identity and connection to family however 26% reported having 6 or more health conditions. Ill health and disability were reported to be employment barriers for almost a third of people (32%). Improving health and wellbeing (78%) was the most cited aspiration. Experiences of racism and ill health influenced engagement with organisations and correspondingly education and employment.ConclusionStrong connections to identity, family and culture in Aboriginal peoples living in social housing coexist along with disrupted connections to mind, body and community. Culturally safe and appropriate pathways to community services and facilities can enhance these connections. Research aimed at evaluating the impact of strengths-based interventions that focus on existing strong connections will be important in understanding whether this approach is effective in improving SEWB in this population.Trial registrationThis trial was retrospectively registered with the ISRCTN Register on the 12/7/21 with the study ID:ISRCTN33665735.

Project description:Australian Aboriginal and Torres Strait Islander children experience unacceptably high rates of dental caries compared to their non-Indigenous Australian counterparts. Dental caries significantly impacts the quality of life of children and their families, particularly in remote communities. While many socioeconomic and lifestyle factors impact caries risk, the central role of the oral microbiota in mediating dental caries has not been extensively investigated in these communities. Here, we examine factors that shape diversity and composition of the salivary microbiota in Aboriginal and Torres Strait Islander children and adolescents living in the remote Northern Peninsula Area (NPA) of Far North Queensland. We employed 16S ribosomal RNA amplicon sequencing to profile bacteria present in saliva collected from 205 individuals aged 4-17 years from the NPA. Higher average microbial diversity was generally linked to increased age and salivary pH, less frequent toothbrushing, and proxies for lower socioeconomic status (SES). Differences in microbial composition were significantly related to age, salivary pH, SES proxies, and active dental caries. Notably, a feature classified as Streptococcus sobrinus increased in abundance in children who reported less frequent tooth brushing. A specific Veillonella feature was associated with caries presence, while features classified as Actinobacillus/Haemophilus and Leptotrichia were associated with absence of caries; a Lactobacillus gasseri feature increased in abundance in severe caries. Finally, we statistically assessed the interplay between dental caries and caries risk factors in shaping the oral microbiota. These data provide a detailed understanding of biological, behavioral, and socioeconomic factors that shape the oral microbiota and may underpin caries development in this group. This information can be used in the future to improve tailored caries prevention and management options for Australian Aboriginal and Torres Strait Islander children and communities.

Project description:BackgroundDespite generally high smoking prevalences, stemming from colonization, the relationship of smoking to mortality has not been quantified reliably in an Indigenous population. We investigate smoking and mortality among Aboriginal and Torres Strait Islander adults in Australia, where current adult daily smoking prevalence is 40.2%.MethodsA prospective study of 1388 cardiovascular disease- and cancer-free Aboriginal adults aged ≥45 years, of the 267 153 45 and Up Study participants randomly sampled from the New South Wales general population over 2006-09. Questionnaire and mortality data were linked (through the Centre for Health Record Linkage) to mid-2019. Adjusted hazard ratios (called relative risks, RRs) for all-cause mortality-among current- and past- versus never-smokers-were estimated overall, by smoking intensity and by age at cessation. Smoking-attributable fractions and associated deaths were estimated.ResultsOver 14 586 person-years' follow-up (median 10.6 years), 162 deaths accrued. Mortality RRs [95% confidence interval (CI)] were 3.90 (2.52-6.04) for current- and 1.95 (1.32-2.90) for past- versus never-smokers, with age heterogeneity. RRs increased with smoking intensity, to 4.29 (2.15-8.57) in current-smokers of ≥25 cigarettes/day. Compared with never-smokers, RRs were 1.48 (0.85-2.57) for those quitting at <45 years of age and 2.21 (1.29-3.80) at 45-54 years. Never-smokers lived an average >10 years longer than current-smokers. Around half of deaths among adults aged ≥45 years were attributable to smoking, exceeding 10 000 deaths in the past decade.ConclusionsIn this population, >80% of never-smokers would survive to 75 years, versus ∼40% of current-smokers. Quitting at all ages examined had substantial benefits versus continuing smoking; those quitting before age 45 years had mortality risks similar to never-smokers. Smoking causes half of deaths in older Aboriginal and Torres Strait Islander adults; Indigenous tobacco control must receive increased priority.

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Development of a National Aboriginal and Torres Strait Islander Cancer Framework: A Shared Process to Guide Effective Policy and Practice.

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