RESUMO
Despite progression in the ethical and methodological conduct of Aboriginal and Torres Strait Islander health research, disparities still pervade, indicating limitations in knowledge translation. One identified gap is a lack of documented experiences detailing how ethical guidelines may be practically applied. This paper aims to (i) describe the research processes involved in co-designing a physical activity and psychosocial health program for Aboriginal and Torres Strait Islander girls and (ii) highlight learnings of the collaborative research journey. The Criteria for Strengthening Reporting of Health Research involving Indigenous Peoples (CONSIDER) statement was used to document participatory research activities undertaken with an Aboriginal community partner. Building upon the CONSIDER statement, Aboriginal (N = 3), Torres Strait Islander (N = 1) and non-Indigenous (N = 4) research team members engaged in critical reflection to identify lessons learnt. Researchers identified a tension between participatory research principles and the expectations of funding agencies and research institutions. Consequently, timelines must be flexible to foster meaningful community engagement and participatory processes. Additionally, researchers and community stakeholders are encouraged to embrace tensions that may associated with participatory research or the pressures Aboriginal and Torres Strait Islander researchers face from their community and organization. Furthermore, differences in professional (i.e. occupational) and cultural knowledge systems need to be acknowledged and accounted for within the early stages of a project to ensure informed decision-making. Identified lessons will assist relevant stakeholders in the development of future Aboriginal and Torres Strait Islander health programming, ensuring the most appropriate health solutions are devised with community.
The ethical and methodological quality of Aboriginal and Torres Strait Islander health research and associated community engagement has progressed significantly in the last thirty years. Despite this progress, improvements in Aboriginal and Torres Strait Islander health disparities have been slow and inconsistent, indicating there are limitations in the available information for health promotion stakeholders. One identified gap is a lack of documented experiences detailing how guidelines may be practically applied. This paper, therefore, details how an intercultural, intersectoral team engaged in a participatory Aboriginal and Torres Strait Islander health research project (i.e. Tidda Talk). In addition to documenting research processes, the paper also offers lessons learnt: (i) Prioritize a flexible response within the project plan, (ii) Embrace Aboriginal and Torres Strait Islander community empowerment whilst working at the cultural interface (i.e. a place of knowledge exchange between Aboriginal and Torres Strait Islander and Western culture, resulting in two-way learning) (iii) Plan to navigate different knowledge systems, (iv) Acknowledge the pressures and demands placed on Aboriginal and Torres Strait Islander researchers. These documented experiences and lessons learnt have the potential to benefit researchers and practitioners in future health service design and evaluation, allowing for culturally appropriate practices to be identified and replicated.
Assuntos
Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Aprendizagem , Feminino , Humanos , Austrália , Promoção da Saúde , Povos IndígenasRESUMO
ISSUE ADDRESSED: Physical activity participation can improve the physical health and social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples. The evaluation of physical activity programmes can elicit a clearer understanding of where these impacts occur and to what extent. We describe applying a collaborative approach to the selection of a set of measures that can be used to examine health and wellbeing impacts of Indigenous community running groups. METHODS: Physical activity, health and wellbeing measurement tools previously used with Aboriginal and Torres Strait Islander peoples were collated. Participants in the collaborative process were nine female running group members aged 30+ years from a regional New South Wales (NSW) town. The Indigenous research method, Yarning, explored views of participating in the group on health and wellbeing and how these could be measured using those collated measurement tools. RESULTS: Runners described participating for holistic physical, mental and social reasons and stated the importance of the group participating together and providing social support to each other. There was broad support for the identified physical activity, lifestyle, physical health, and social and emotional wellbeing measures, with social networks and sports injuries identified as additionally relevant. CONCLUSIONS: Co-selecting measures to evaluate a physical activity programme for Aboriginal and Torres Strait Islander participants can better inform the development of relevant future healthy lifestyle programme evaluation, revealing factors that may be missed as relevant by researchers. SO WHAT?: This process presents an example of determining evaluation measures with Aboriginal and Torres Strait Islander participants that could be applied more broadly to evaluation design.
Assuntos
Serviços de Saúde do Indígena , Corrida , Feminino , Humanos , Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Exercício Físico/psicologia , New South WalesRESUMO
AIMS: To focus on the needs, challenges and opportunities to improve access to cardiac rehabilitation (CR) (Heart: Road to health [HRH]) for Aboriginal and Torres Strait Islander peoples in rural and remote (R&R) areas of North Queensland. CONTEXT: It is known that there is insufficient access to HRH for Aboriginal and Torres Strait Islander peoples in R&R areas of NQ, who have the highest rates of heart disease and socioeconomic disadvantage mainly due to poor social determinants of health. However, at least in part due to the impact of colonialism and predominantly western medicalised approach to health care, few gains have been made. APPROACH: This commentary draws on recent research and literature and reflects on cultural issues that impact on improving access to an HRH for Aboriginal and Torres Strait Islander peoples in R&R areas. The underutilisation of the skills of Aboriginal and Torres Strait Islander Health Workers (ATSIHW) and a lack of a defined process to ensure access to culturally responsive HRH are discussed. Finally, a way forward is proposed that includes the development of policies, pathways and guidelines to ensure that appropriate support is available in the client's home community. CONCLUSION: It is proposed that culturally responsive, accessible and effective HRH is achievable through the reorientation of current health systems that include a continuous client-centred pathway from hospital to home. In this model, ATSIHW will take a lead or partnership role in which their clinical, cultural brokerage and health promotion skills are fully utilised.
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Reabilitação Cardíaca , Serviços de Saúde do Indígena , Cardiopatias , Humanos , Queensland , Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Promoção da SaúdeRESUMO
OBJECTIVE: To assess implementation of in-patient cardiac rehabilitation (Phase-1-cardiac rehabilitation), impact on people in rural and remote areas of Australia and potential methods for addressing identified weaknesses. DESIGN: Exploratory case study methodology using qualitative and quantitative methods. Qualitative data collection via semi-structured interviews, using thematic analysis, augmented by quantitative data collection via a medical record audit. SETTING: Four regional hospitals (2 Queensland Health and 2 private) providing tertiary health care. PARTICIPANTS: (a) Hospital in-patients with heart disease ≥18 years. (b) Staff responsible for their care. OUTCOME MEASURES: Implementation of Phase-1-cardiac rehabilitation in tertiary hosptials in North Queensland and the impact on in-patients discharge planning and post discharge care. Recommentations and implications for practice are proposed to address deficits. RESULTS: Phase-1-cardiac rehabilitation implementation rates, in-patient understanding and multidisciplinary team involvement were low. The highest rates of Phase-1-cardiac rehabilitation were for in-patients with a length of stay three days or more in cardiac units with cardiac educators. Rates were lower in cardiac units with no cardiac educators, and lowest for in-patients in all areas of all hospitals with length of stay of two days or less days. Low Phase-1-cardiac rehabilitation implementation rates resulted in poor in-patient understanding about their disease, treatment and post-discharge care. Further, medical discharge summaries rarely mentioned cardiac rehabilitation/secondary prevention or risk factor management resulting in a lack of information for health care providers on cardiac rehabilitation and holistic health care. CONCLUSION: Implementation of Phase-1-cardiac rehabilitation in regional hospitals in this study fell short of recommended best practice, resulting in patients' poor preparation for discharge, and insufficient information on holistic care for health care providers in rural and remote areas. These factors potentially impact on holistic care for people returning home following treatment for heart disease.
Assuntos
Reabilitação Cardíaca , Cardiopatias , Serviços de Saúde Rural , Assistência ao Convalescente , Austrália , Humanos , Alta do PacienteRESUMO
CHAPTER 1: HOW AUSTRALIA IMPROVED HEALTH EQUITY THROUGH ACTION ON THE SOCIAL DETERMINANTS OF HEALTH: Do not think that the social determinants of health equity are old hat. In reality, Australia is very far away from addressing the societal level drivers of health inequity. There is little progressive policy that touches on the conditions of daily life that matter for health, and action to redress inequities in power, money and resources is almost non-existent. In this chapter we ask you to pause this reality and come on a fantastic journey where we envisage how COVID-19 was a great disruptor and accelerator of positive progressive action. We offer glimmers of what life could be like if there was committed and real policy action on the social determinants of health equity. It is vital that the health sector assists in convening the multisectoral stakeholders necessary to turn this fantasy into reality. CHAPTER 2: ABORIGINAL AND TORRES STRAIT ISLANDER CONNECTION TO CULTURE: BUILDING STRONGER INDIVIDUAL AND COLLECTIVE WELLBEING: Aboriginal and Torres Strait Islander peoples have long maintained that culture (ie, practising, maintaining and reclaiming it) is vital to good health and wellbeing. However, this knowledge and understanding has been dismissed or described as anecdotal or intangible by Western research methods and science. As a result, Aboriginal and Torres Strait Islander culture is a poorly acknowledged determinant of health and wellbeing, despite its significant role in shaping individuals, communities and societies. By extension, the cultural determinants of health have been poorly defined until recently. However, an increasing amount of scientific evidence supports what Aboriginal and Torres Strait Islander people have always said - that strong culture plays a significant and positive role in improved health and wellbeing. Owing to known gaps in knowledge, we aim to define the cultural determinants of health and describe their relationship with the social determinants of health, to provide a full understanding of Aboriginal and Torres Strait Islander wellbeing. We provide examples of evidence on cultural determinants of health and links to improved Aboriginal and Torres Strait Islander health and wellbeing. We also discuss future research directions that will enable a deeper understanding of the cultural determinants of health for Aboriginal and Torres Strait Islander people. CHAPTER 3: PHYSICAL DETERMINANTS OF HEALTH: HEALTHY, LIVEABLE AND SUSTAINABLE COMMUNITIES: Good city planning is essential for protecting and improving human and planetary health. Until recently, however, collaboration between city planners and the public health sector has languished. We review the evidence on the health benefits of good city planning and propose an agenda for public health advocacy relating to health-promoting city planning for all by 2030. Over the next 10 years, there is an urgent need for public health leaders to collaborate with city planners - to advocate for evidence-informed policy, and to evaluate the health effects of city planning efforts. Importantly, we need integrated planning across and between all levels of government and sectors, to create healthy, liveable and sustainable cities for all. CHAPTER 4: HEALTH PROMOTION IN THE ANTHROPOCENE: THE ECOLOGICAL DETERMINANTS OF HEALTH: Human health is inextricably linked to the health of the natural environment. In this chapter, we focus on ecological determinants of health, including the urgent and critical threats to the natural environment, and opportunities for health promotion arising from the human health co-benefits of actions to protect the health of the planet. We characterise ecological determinants in the Anthropocene and provide a sobering snapshot of planetary health science, particularly the momentous climate change health impacts in Australia. We highlight Australia's position as a major fossil fuel producer and exporter, and a country lacking cohesive and timely emissions reduction policy. We offer a roadmap for action, with four priority directions, and point to a scaffold of guiding approaches - planetary health, Indigenous people's knowledge systems, ecological economics, health co-benefits and climate-resilient development. Our situation requires a paradigm shift, and this demands a recalibration of health promotion education, research and practice in Australia over the coming decade. CHAPTER 5: DISRUPTING THE COMMERCIAL DETERMINANTS OF HEALTH: Our vision for 2030 is an Australian economy that promotes optimal human and planetary health for current and future generations. To achieve this, current patterns of corporate practice and consumption of harmful commodities and services need to change. In this chapter, we suggest ways forward for Australia, focusing on pragmatic actions that can be taken now to redress the power imbalances between corporations and Australian governments and citizens. We begin by exploring how the terms of health policy making must change to protect it from conflicted commercial interests. We also examine how marketing unhealthy products and services can be more effectively regulated, and how healthier business practices can be incentivised. Finally, we make recommendations on how various public health stakeholders can hold corporations to account, to ensure that people come before profits in a healthy and prosperous future Australia. CHAPTER 6: DIGITAL DETERMINANTS OF HEALTH: THE DIGITAL TRANSFORMATION: We live in an age of rapid and exponential technological change. Extraordinary digital advancements and the fusion of technologies, such as artificial intelligence, robotics, the Internet of Things and quantum computing constitute what is often referred to as the digital revolution or the Fourth Industrial Revolution (Industry 4.0). Reflections on the future of public health and health promotion require thorough consideration of the role of digital technologies and the systems they influence. Just how the digital revolution will unfold is unknown, but it is clear that advancements and integrations of technologies will fundamentally influence our health and wellbeing in the future. The public health response must be proactive, involving many stakeholders, and thoughtfully considered to ensure equitable and ethical applications and use. CHAPTER 7: GOVERNANCE FOR HEALTH AND EQUITY: A VISION FOR OUR FUTURE: Coronavirus disease 2019 has caused many people and communities to take stock on Australia's direction in relation to health, community, jobs, environmental sustainability, income and wealth. A desire for change is in the air. This chapter imagines how changes in the way we govern our lives and what we value as a society could solve many of the issues Australia is facing - most pressingly, the climate crisis and growing economic and health inequities. We present an imagined future for 2030 where governance structures are designed to ensure transparent and fair behaviour from those in power and to increase the involvement of citizens in these decisions, including a constitutional voice for Indigenous peoples. We imagine that these changes were made by measuring social progress in new ways, ensuring taxation for public good, enshrining human rights (including to health) in legislation, and protecting and encouraging an independent media. Measures to overcome the climate crisis were adopted and democratic processes introduced in the provision of housing, education and community development.
Assuntos
Equidade em Saúde/tendências , Promoção da Saúde/tendências , Austrália , Comércio , Planejamento em Saúde Comunitária/tendências , Tecnologia Digital/tendências , Saúde Ambiental/tendências , Previsões , Serviços de Saúde do Indígena/tendências , Humanos , Havaiano Nativo ou Outro Ilhéu do Pacífico , Determinantes Sociais da Saúde/tendênciasRESUMO
ISSUE ADDRESSED: Noncommunicable chronic disease underlies much of the life expectancy gap experienced by Aboriginal and Torres Strait Islander people. Modifying contributing risk factors; tobacco smoking, nutrition, alcohol consumption, physical activity, social and emotional wellbeing (SNAPS) could help close this disease gap. This scoping review identified and describes SNAPS health promotion programs implemented for Aboriginal and Torres Strait Islander people in Australia. METHODS: Databases PubMed, CINAHL, Informit (Health Collection and Indigenous Peoples Collection), Scopus, Trove and relevant websites and clearing houses were searched for eligible studies until June 2015. To meet the inclusion criteria the program had to focus on modifying one of the SNAPS risk factors and the majority of participants had to identify as being of Aboriginal and/or Torres Strait Islander heritage. RESULTS: The review identified 71 health promotion programs, described in 83 publications. Programs were implemented across a range of health and community settings and included all Australian states and territories, from major cities to remote communities. The SNAPS factor addressed most commonly was nutrition. Some programs included the whole community, or had multiple key audiences, whilst others focused solely on one subgroup of the population such as chronic disease patients, pregnant women or youth. Fourteen of the programs reported no outcome assessments. CONCLUSIONS: Health promotion programs for Aboriginal and Torres Strait Islander people have not been adequately evaluated. The majority of programs focused on the development of individual skills and changing personal behaviours without addressing the other health promotion action areas, such as creating supportive environments or reorienting health care services. SO WHAT?: This scoping review provides a summary of the health promotion programs that have been delivered in Australia for Aboriginal and Torres Strait Islander people to prevent or manage chronic disease. These programs, although many are limited in quality, should be used to inform future programs. To improve evidence-based health promotion practice, health promotion initiatives need to be evaluated and the findings published publicly.
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Doença Crônica , Promoção da Saúde , Havaiano Nativo ou Outro Ilhéu do Pacífico , Adolescente , Austrália , Feminino , Humanos , Gravidez , Fatores de RiscoRESUMO
OBJECTIVE: Colorectal cancer (CRC) screening using a Faecal Occult Blood Test (FOBT) is a well-established population intervention to reduce mortality and morbidity of CRC. As Indigenous people are not fully benefiting from the screening programs, a greater understanding of barriers and enablers affecting participation is needed. METHODS: Searches were carried out in PubMed, Embase, Sociological Abstracts, Scopus, CINAHL, and selected websites. Both qualitative and quantitative studies related to Indigenous populations of Canada, New Zealand, Australia and the United States of America were assessed for quality and data related to FOBT were extracted and synthetised. RESULTS: A total of 375 publications were identified and screened against the inclusion/exclusion criteria. Thirty-four studies were included in the review. The barriers for participation in CRC screening included the lack of culturally competent health service access, particularly access to Indigenous health service providers. Medical discrimination, long-standing distrust in Western medicine and/or health staff and screening tests were all identified as barriers for Indigenous people. There were a small number of promising interventions to improve participation, which could be considered on a broader scale to increase overall participation by Indigenous people in CRC screening. CONCLUSIONS: The review identified barriers and possible enablers for Indigenous participation in the CRC screening program, some which appear to be unique to Indigenous people. Further intervention studies conducted in partnership with Indigenous communities are needed to improve participation.
Assuntos
Neoplasias Colorretais , Detecção Precoce de Câncer , Acessibilidade aos Serviços de Saúde , Sangue Oculto , Aceitação pelo Paciente de Cuidados de Saúde/etnologia , Grupos Populacionais , Austrália , Neoplasias Colorretais/diagnóstico , Neoplasias Colorretais/prevenção & controle , Serviços de Saúde do Indígena , Humanos , Nova Zelândia , América do Norte , Grupos Populacionais/etnologia , Grupos Populacionais/psicologiaRESUMO
BACKGROUND: The lack of attention to Indigenous epistemologies and, more broadly, Indigenous values in primary research, is mirrored in the standardised critical appraisal tools used to guide evidence-based practice and systematic reviews and meta-syntheses. These critical appraisal tools offer no guidance on how validity or contextual relevance should be assessed for Indigenous populations and cultural contexts. Failure to tailor the research questions, design, analysis, dissemination and knowledge translation to capture understandings that are specific to Indigenous peoples results in research of limited acceptability and benefit and potentially harms Indigenous peoples. A specific Aboriginal and Torres Strait Islander Quality Appraisal Tool is needed to address this gap. METHOD: The Aboriginal and Torres Strait Islander Quality Appraisal Tool (QAT) was developed using a modified Nominal Group and Delphi Techniques and the tool's validity, reliability, and feasibility were assessed over three stages of independent piloting. National and international research guidelines were used as points of reference. Piloting of the Aboriginal and Torres Strait Islander QAT with Aboriginal and Torres Strait Islander and non-Indigenous experts led to refinement of the tool. RESULTS: The Aboriginal and Torres Strait Islander QAT consists of 14 questions that assess the quality of health research from an Aboriginal and Torres Strait Islander perspective. The questions encompass setting appropriate research questions; community engagement and consultation; research leadership and governance; community protocols; intellectual and cultural property rights; the collection and management of research material; Indigenous research paradigms; a strength-based approach to research; the translation of findings into policy and practice; benefits to participants and communities involved; and capacity strengthening and two-way learning. Outcomes from the assessment of the tool's validity, reliability, and feasibility were overall positive. CONCLUSION: This is the first tool to appraise research quality from the perspective of Indigenous peoples. Through the uptake of the Aboriginal and Torres Strait Islander QAT we hope to improve the quality and transparency of research with Aboriginal and Torres Strait Islander peoples, with the potential for greater improvements in Aboriginal and Torres Strait Islander health and wellbeing.
Assuntos
Pesquisa sobre Serviços de Saúde , Serviços de Saúde do Indígena , Austrália , Doença Crônica , Pesquisa sobre Serviços de Saúde/normas , Humanos , Havaiano Nativo ou Outro Ilhéu do Pacífico , Reprodutibilidade dos TestesRESUMO
OBJECTIVES: To describe rates of hospitalisation and Coaching on Achieving Cardiovascular Health referral, for Queensland's adults with heart and related disease, and comparisons between Aboriginal and Torres Strait Islander and non-Indigenous peoples in northern Queensland. DESIGN: Descriptive retrospective epidemiological study of Queensland Health Patient Admission Data Collection for adults with heart and related disease, and Coaching on Achieving Cardiovascular Health referral data. Relative risk and age standardisation were calculated for Aboriginal and Torres Strait Islander and non-Indigenous peoples. PARTICIPANTS: Queensland's adults ≥20 years, hospitalised with heart and related disease (1 January 2012-31 December 2016). SETTING: Queensland, Australia. MAIN OUTCOME MEASURES: Queensland Health Hospital and Health Services' hospitalisation and Coaching on Achieving Cardiovascular Health referral rates for heart and related disease. RESULTS: Queensland's Aboriginal and Torres Strait Islander peoples have a higher hospitalisation rate for heart and related disease, with higher rates for northern Queensland. Queensland's overall Coaching on Achieving Cardiovascular Health referral rates were low, but higher for Aboriginal and Torres Strait Islander peoples. Deficiencies in documentation of Aboriginal and Torres Strait Islander people's status affected results in some areas. CONCLUSION: Queensland's Aboriginal and Torres Strait Islander peoples were more likely to be admitted to hospital for heart and related disease and referred to Coaching on Achieving Cardiovascular Health than non-Indigenous peoples. However, hospitalisation and Coaching on Achieving Cardiovascular Health referral rates are unlikely to reflect the needs of Aboriginal and Torres Strait Islander peoples especially in rural and very remote areas given their higher mortality and morbidity rates and fewer services.
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Reabilitação Cardíaca/métodos , Reabilitação Cardíaca/estatística & dados numéricos , Serviços de Saúde do Indígena/estatística & dados numéricos , Cardiopatias/prevenção & controle , Hospitalização/estatística & dados numéricos , Havaiano Nativo ou Outro Ilhéu do Pacífico/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/métodos , Queensland , Estudos RetrospectivosRESUMO
BACKGROUND: Aboriginal and Torres Strait Islander Australians have poorer cancer outcomes than other Australians. Comparatively little is known of the type and amount of cancer treatment provided to Aboriginal and Torres Strait Islander people and the consequences for cancer survival. This study quantifies the influence of surgical, systemic and radiotherapy treatment on risk of cancer death among matched cohorts of cancer cases and, the comparative exposure of cohorts to these treatments. METHODS: Cancers registered among Aboriginal South Australians in 1990-2010 (N = 777) were matched with randomly selected non-Indigenous cases by sex, birth and diagnostic year, and primary site, then linked to administrative cancer treatment for the period from 2 months before to 13 months after diagnosis. Competing risk regression summarised associations of Indigenous status, geographic remoteness, comorbidities, cancer stage and treatment exposure with risk of cancer death. RESULTS: Fewer Aboriginal cases had localised disease at diagnosis (37.2% versus 50.2%) and they were less likely to: experience hospitalisation with cancer diagnosis, unadjusted odds ratio (UOR) = 0.76; 95%CI = 0.59-0.98; have surgery UOR = 0.65; 95%CI = 0.53-0.80; systemic therapies UOR = 0.64; 95%CI = 0.52-0.78; or radiotherapy, UOR = 0.76; 95%CI = 0.63-0.94. Localised disease carried lower risk of cancer death compared to advanced cases receiving surgery or systemic therapies, SHR = 0.34; 95%CI = 0.25-0.47 and SHR = 0.35; 95%CI = 0.25-0.48. Advanced disease and no treatment carried higher risk of cancer death, SHR = 1.82; 95%CI = 1.26-2.63. CONCLUSION: The effects of treatment did not differ between Aboriginal and non-Indigenous cohorts. However, comparatively less exposure to surgical and systemic treatments among Aboriginal cancer cases further complicated the disadvantages associated with geographic remoteness, advanced stage of disease and co-morbid conditions at diagnosis and add to disparities in cancer death. System level responses to improving access, utilisation and quality of effective treatments are needed to improve survival after cancer diagnosis.
Assuntos
Havaiano Nativo ou Outro Ilhéu do Pacífico/estatística & dados numéricos , Neoplasias/etnologia , Neoplasias/terapia , Idoso , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/mortalidade , Medição de Risco , Austrália do Sul/epidemiologia , Resultado do TratamentoRESUMO
BACKGROUND: Australia's Aboriginal and Torres Strait Islander women have poorer survival and twice the disease burden from breast cancer compared to other Australian women. These disparities are influenced, but not fully explained, by more diagnoses at later stages. Incorporating breast screening, hospital and out of hospital treatment and cancer registry records into a person-linked data system can improve our understanding of breast cancer outcomes. We focussed one such system on a population-based cohort of Aboriginal women in South Australia diagnosed with breast cancer and a matched cohort of non-Aboriginal women with breast cancer. We quantify Aboriginal and non-Aboriginal women's contact with publicly funded screening mammograms; quantify exposure to a selection of cancer treatment modalities; then assess the relationship between screening, treatment and the subsequent risk of breast cancer death. METHODS: Breast cancers registered among Aboriginal women in South Australia in 1990-2010 (N = 77) were matched with a random selection of non-Aboriginal women by birth and diagnostic year, then linked to screening records, and treatment 2 months before and 13 months after diagnosis. Competing risk regression summarised associations of Aboriginality, breast screening, cancer stage and treatment with risk of breast cancer death. RESULTS: Aboriginal women were less likely to have breast screening (OR = 0.37, 95%CIs 0.19-0.73); systemic therapies (OR = 0.49, 95%CIs 0.24-0.97); and, surgical intervention (OR = 0.35, 95%CIs 0.15-0.83). Where surgery occurred, mastectomy was more common among Aboriginal women (OR = 2.58, 1.22-5.46). Each of these factors influenced the risk of cancer death, reported as sub-hazard ratios (SHR). Regional spread disease (SHR = 34.23 95%CIs 6.76-13.40) and distant spread (SHR = 49.67 95%CIs 6.79-363.51) carried more risk than localised disease (Reference SHR = 1). Breast screening reduced the risk (SHR = 0.07 95%CIs 0.01-0.83). So too did receipt of systemic therapy (SHR = 0.06 95%CIs 0.01-0.41) and surgical treatments (SHR = 0.17 95%CIs 0.04-0.74). In the presence of adjustment for these factors, Aboriginality did not further explain the risk of breast cancer death. CONCLUSION: Under-exposure to screening and treatment of Aboriginal women with breast cancers in South Australia contributed to excess cancer deaths. Improved access, utilisation and quality of effective treatments is needed to improve survival after breast cancer diagnosis.
Assuntos
Neoplasias da Mama/diagnóstico , Disparidades em Assistência à Saúde/etnologia , Adulto , Neoplasias da Mama/etnologia , Neoplasias da Mama/mortalidade , Estudos de Coortes , Detecção Precoce de Câncer/normas , Detecção Precoce de Câncer/estatística & dados numéricos , Feminino , Serviços de Saúde do Indígena/normas , Serviços de Saúde do Indígena/estatística & dados numéricos , Humanos , Mamografia/estatística & dados numéricos , Mastectomia/estatística & dados numéricos , Pessoa de Meia-Idade , Havaiano Nativo ou Outro Ilhéu do Pacífico/etnologia , Estadiamento de Neoplasias , Sistema de Registros , Pesquisa , Estudos Retrospectivos , Austrália do Sul/etnologiaRESUMO
BACKGROUND: A healthy start predicts better health in later life. Many remote-living Aboriginal and Torres Strait Islander Australian families lack access to consistent, culturally-safe health services. This paper presents a study of implementation of the Baby One Program (BOP). The BOP was designed as a family-centred, Indigenous Healthworker-led, home-visiting model of care focused on promoting family health to give children the best start to life. It was developed by Aboriginal community-controlled Apunipima Cape York Health Council and delivered in Queensland Cape York remote communities. We aimed to determine how the BOP was implemented, enablers, strategies used and formative implementation outcomes. METHODS: The qualitative approach utilised theoretical and purposive sampling to explore people's experiences of a program implementation process. Data were generated from semi-structured interviews with four family members enrolled in the BOP and 24 Apunipima staff members. In addition, twenty community members, including two program users, participated in a men's community focus group. The findings are presented according to themes arising from the data. RESULTS: The BOP was rolled out in nine remote Cape York communities between July 2014 and December 2015 and there was high uptake. Indigenous Healthworkers were supported by midwives and maternal and child health nurses to deliver health education to 161 eligible families. The key to effective implementation of family-centred care appeared to be the relationships formed between health practitioners, especially Indigenous Healthworkers, and families. The data revealed the following themes: challenging environments for new families and valuing cultural ways, resourcing program delivery, working towards a team approach, negotiating the cultural interface, engaging families, exchanging knowledge through 'yarning', strengthening the workforce, and seeing health changes in families. Healthworker education and training, and knowledge exchange between Healthworkers, midwives and nurses was critical to program effectiveness. The program continues to grow despite substantial logistic, financial and practical challenges. CONCLUSIONS: This study describes an evolving process and explores how health providers connect with families and how the program responds to family and cultural issues. Program development is ongoing; strengthened by more community-level involvement, embedded strategies for ongoing self-evaluation and continuous quality improvements that are responsive to family needs.
Assuntos
Implementação de Plano de Saúde/normas , Serviços de Saúde do Indígena , Havaiano Nativo ou Outro Ilhéu do Pacífico/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Avaliação de Programas e Projetos de Saúde/normas , Adulto , Competência Cultural , Atenção à Saúde/métodos , Saúde da Família , Feminino , Grupos Focais , Promoção da Saúde/métodos , Humanos , Lactente , Recém-Nascido , Masculino , Gravidez , Pesquisa Qualitativa , QueenslandRESUMO
ISSUE ADDRESSED: Physical inactivity is a key health risk among Aboriginal and Torres Strait Islander (Indigenous) Australians. We examined perceptions of the Indigenous Marathon Program (IMP) in a remote Torres Strait island community. METHODS: Semi-structured interviews with community and program stakeholders (n = 18; 14 Indigenous) examined barriers and enablers to running and the influence of the IMP on the community. A questionnaire asked 104 running event participants (n = 42 Indigenous) about their physical activity behaviours, running motivation and perceptions of program impact. Qualitative data were analysed using thematic content analysis, and quantitative data were analysed using descriptive statistics. RESULTS: Interviews revealed six main themes: community readiness, changing social norms to adopt healthy lifestyles, importance of social support, program appeal to hard-to-reach population groups, program sustainability and initiation of broader healthy lifestyle ripple effects beyond running. Barriers to running in the community were personal (cultural attitudes; shyness) and environmental (infrastructure; weather; dogs). Enablers reflected potential strategies to overcome described barriers. Indigenous questionnaire respondents were more likely to report being inspired to run by IMP runners than non-Indigenous respondents. CONCLUSIONS: Positive "ripple" effects of the IMP on running and broader health were described to have occurred through local role modelling of healthy lifestyles by IMP runners that reduced levels of "shame" and embarrassment, a common barrier to physical activity among Indigenous Australians. A high initial level of community readiness for behaviour change was also reported. SO WHAT?: Strategies to overcome this "shame" factor and community readiness measurement should be incorporated into the design of future Indigenous physical activity programs.
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Comportamentos Relacionados com a Saúde , Motivação , Havaiano Nativo ou Outro Ilhéu do Pacífico/psicologia , Corrida/psicologia , Adolescente , Adulto , Austrália , Exercício Físico/psicologia , Feminino , Humanos , Entrevistas como Assunto , Masculino , Projetos Piloto , Percepção Social , Estigma Social , Inquéritos e Questionários , Adulto JovemRESUMO
INTRODUCTION: The inequity of randomising participants to control groups in randomised controlled trials (RCTs) is often considered inappropriate, especially for research trials that include vulnerable populations such as Indigenous peoples. The Aboriginal and Torres Strait Islander Women's Fitness Program conducted a trial that randomly assigned participants to 'active' and 'waitlisted' groups. This paper reports on participant views of the randomisation protocol. METHODS: A pragmatic RCT was conducted in an urban setting to assess the effectiveness of the 12-week Aboriginal and Torres Strait Islander Women's Fitness Program on metabolic health outcomes and waist circumference. Qualitative interviews were conducted at follow-up, one of the objectives was to explore participant perspectives on the research protocol, including participant randomisation to 'Active' and 'Waitlisted' groups. RESULTS: A total of 49 interviews were conducted (26 Active and 23 Waitlisted participants). Two key factors influenced participant views on the protocol: 1) group assignment; and 2) how well they understood the research design, including the justification for randomisation. 'Active' participants were concerned about the inequity of the randomisation process but overall supported the study protocol. Although most Waitlisted participants were disappointed about having to wait 12-months for the program, some participants derived motivation from being waitlisted, whilst others lost motivation. Well-informed participants were more likely to express both support for the randomisation process and an understanding of the research benefits than participants not attending an information session prior to registration. CONCLUSIONS: Participants were more accepting of the research protocol if it was clearly explained to them, if they understood the randomisation process and felt the randomisation was justified in terms of the potential for the results to benefit other Aboriginal and Torres Strait Islander women. Our study suggests that the time and resources required to adequately explain the research protocol in research trials should not be undervalued. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry (ACTRN12610000224022).
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Aptidão Física , Sujeitos da Pesquisa/psicologia , Saúde da Mulher , Adulto , Austrália , Feminino , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Havaiano Nativo ou Outro Ilhéu do Pacífico , Populações Vulneráveis , Circunferência da CinturaRESUMO
Background: The period before, during, and after pregnancy presents an opportunity to reduce diabetes-related risks, which in Australia disproportionately impact Aboriginal and Torres Strait Islander women. Collaboration with Aboriginal and Torres Strait Islander women/communities is essential to ensure acceptability and sustainability of lifestyle modifications. Using a novel co-design approach, we aimed to identify shared priorities and potential lifestyle strategies. We also reflected on learnings from this approach. Methods: We conducted 11 workshops and 8 interviews at two sites in Australia's Northern Territory (Central Australia and Top End), using experience-based co-design (EBCD) and incorporating principles of First Nations participatory research. Workshops/interviews explored participant' experiences and understanding of diabetes in pregnancy, contextual issues, and potential lifestyle strategies. Participants included three groups: 1) Aboriginal and Torres Strait Islander women of reproductive age (defined as aged 16-45 years); 2) Aboriginal and Torres Strait Islander community members; and 3) health/community services professionals. The study methodology sought to amplify the voices of Aboriginal women. Findings: Participants included 23 women between ages 16-45 years (9 with known lived experience of diabetes in pregnancy), 5 community members and 23 health professionals. Key findings related to identified priority issues, strategies to address priorities, and reflections on use of EBCD methodology. Priorities were largely consistent across study regions: access to healthy foods and physical activity; connection to traditional practices and culture; communication regarding diabetes and related risks; and the difficulty for women of prioritising their health among competing priorities. Strategies included implementation of a holistic women's program in Central Australia, while Top End participants expressed the desire to improve nutrition, peer support and community awareness of diabetes. EBCD provided a useful structure to explore participants' experiences and collectively determine priorities, while allowing for modifications to ensure co-design methods were contextually appropriate. Challenges included the resource-intensive nature of stakeholder engagement, and collaborating effectively with services and communities when researchers were "outsiders". Conclusions: A hybrid methodology using EBCD and First Nations participatory research principles enabled collaboration between Aboriginal women, communities and health services to identify shared priorities and solutions to reduce diabetes-related health risks. Genuine co-design processes support self-determination and enhance acceptability and sustainability of health strategies.
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BACKGROUND: Australia does not have a national strategy for Aboriginal and Torres Strait Islander adolescent health and as a result, policy and programming actions are fragmented and may not be responsive to needs. Efforts to date have also rarely engaged Aboriginal and Torres Strait Islander people in co-designing solutions. The Roadmap Project aims to work in partnership with young people to define priority areas of health and well-being need and establish the corresponding developmentally appropriate, evidence-based actions. METHODS AND ANALYSIS: All aspects of this project are governed by a group of Aboriginal and Torres Strait Islander young people. Needs, determinants and corresponding responses will be explored with Aboriginal and Torres Strait Islander adolescents (aged 10-24 years) across Australia through an online qualitative survey, interviews and focus group discussions. Parents, service providers and policy makers (stakeholders) will share their perspectives on needs and support required through interviews. Data generated will be co-analysed with the governance group and integrated with population health data, policy frameworks and evidence of effective programmes (established through reviews) to define responsive and effective actions for Aboriginal and Torres Strait Islander adolescent health and well-being. ETHICS AND DISSEMINATION: Ethical approval for this study has been obtained from the Aboriginal Health Council of South Australia (Ref: 04-21-956), the Aboriginal Health and Medical Research Council of New South Wales (Ref: 1918/22), the Western Australian Aboriginal Health Ethics Committee (Ref: HREC1147), the Northern Territory Health and Menzies School of Health Research (Ref: 2022-4371), ACT Health Human Research Ethics Committee (Ref: 2022.ETH.00133), the St. Vincent's Hospital, Victoria (Ref: HREC 129/22), University of Tasmania (Ref: 28020), Far North Queensland Human Research Ethics Committee (Ref: HREC/2023/QCH/89911) and Griffith University (Ref: 2023/135). Prospective adolescent participants will provide their own consent for the online survey (aged 13-24 years) and, interviews or focus group discussions (aged 15-24 years); with parental consent and adolescent assent required for younger adolescents (aged 10-14 years) participating in interviews.Study findings (priority needs and evidence-based responses) will be presented at a series of co-design workshops with adolescents and stakeholders from relevant sectors. We will also communicate findings through reports, multimedia clips and peer-reviewed publications as directed by the governance group.