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Aboriginal Australians experience a high prevalence of chronic obstructive pulmonary disease (COPD), with high rates of potentially preventable hospitalisations. However, little is known about Aboriginal peoples' experiences of living with COPD and how they navigate health care systems. This study used thematic analysis and Aboriginal methodology to explore Aboriginal peoples' lived experiences of COPD, their health care journey from receiving a diagnosis of COPD to the clinical management, and the impact of COPD on their daily lives. We conducted in-depth semi-structured interviews over a 6-month period with 18 Aboriginal adults diagnosed with COPD from four Aboriginal Community Controlled Health Services (ACCHS) in New South Wales, Australia. Reflexive thematic analysis was employed to ensure rigour. The findings revealed deeply personal and reflective stories shaped by historical, social, and cultural realities of Aboriginal peoples living with COPD. Four themes were identified characterising their experiences. Based on the findings, the following guidance is provided on future COPD care for Aboriginal peoples: Better alignment of existing COPD management with Aboriginal peoples' cultural contexts and perspectives to improve access to culturally safe care; Increased funding for ACCHS to enhance COPD management, such as early detection through case finding and access to ACCHS-led pulmonary rehabilitation; Engaging family members in COPD management and providing culturally centred COPD education that facilitates discussions and builds health literacy and self-management skills; Implementing health promotion initiatives to increase awareness and counteract fear and shame to improve early COPD detection.
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BackgroundIn Australia, medications can be prescribed by medical practitioners, dentists, nurses, and dispensed by pharmacists. Until recently, pharmacists have been limited to prescribing Schedule 2 and 3 medications, and optometrists, podiatrists, and nurse practitioners can prescribe medications under their scope of practice in some areas of Australia. Recently, the New South Wales (NSW) Government initiated a trial where approved pharmacists in NSW and Australian Capital Territory have an expanded scope of practice to prescribe further medications for urinary tract infections, dermatology conditions (mild to moderate atopic dermatitis, herpes zoster (shingles), impetigo, and mild plaque psoriasis), and resupply of contraceptives. This protocol is for a sub-study of the larger research trial and will explore the perspectives of Aboriginal and Torres Strait Islander peoples and communities including clinicians, healthcare services, and community members about the expanded scope of pharmacists' practice.Methods and analysisYarning circles (group) and individual yarns (semi-structured interviews) will be conducted with leaders, clinicians working with Aboriginal and Torres Strait Islander peoples (general practitioners, nurses, Aboriginal health workers, community pharmacists), Aboriginal Elders, and community members to understand perspectives of the risks, benefits, opportunities, and issues associated with pharmacists prescribing for these specific conditions. Ethics approval was obtained through the Aboriginal Health and Medical Research Council of NSW.ConclusionThe findings of this sub-study will clarify Aboriginal and Torres Strait Islander peoples' unique perspectives, including perception of risks and opportunities.
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Objectives and importance of study: In the public service context, co-design is novel and ever-expanding. Co-design brings together decision-makers and people impacted by a problem to unpack the problem and design solutions together. Government agencies are increasingly adopting co-design to understand and meet the unique needs of priority populations. While the literature illustrates a progressive uptake of co-design in service delivery, there is little evidence of co-design in policy development. We propose a qualitative study protocol to explore and synthesise the evidence (literary, experiential and theoretical) of co-design in public policy. This can inform a framework to guide policymakers who co-design health policy with Aboriginal and Torres Strait Islander people. Methods: The study design is informed by a critical qualitative approach that comprises five successive stages. The study commences with the set-up of a co-design brains trust (CBT), comprising people with lived experience of being Aboriginal and Torres Strait Islander who have either co-designed with public agencies and/or have health policymaking expertise (stage 1) The brains trust will play a key role in guiding the protocol's methodology, data collection, reporting and co-designing a 'Version 1' framework to guide policymakers in co-designing health policy with Aboriginal and Torres Strait Islander people (the framework). Two realist evaluations will explore co-design in health policy settings to understand how co-design works for whom, under what circumstances, and how (stages 2 and 3) The findings of the realist evaluations will guide the CBT in developing the framework (stage 4). A process evaluation of the CBT setup and framework development will assess the degree to which the CBT achieved its intended objectives (stage 5). Conclusion: The proposed study will produce much-needed evidence to guide policymakers to share decision-making power and privilege the voices of Aboriginal and Torres Strait Islander people when co-designing health policy. Learnings from this translational research will be shared via the CBT, academic papers, conference presentations and policy briefings.
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INTRODUCTION: Digital health technologies have the potential to provide cost-effective care to remote and underserved populations. To realise this potential, research must involve people not traditionally included. No research focuses on the acceptability and feasibility of older Indigenous people using wearables for early atrial fibrillation (AF) detection. This protocol compares digital augmentation against standard practice to detect AF, evaluate heart health self-efficacy and health literacy changes and identify barriers in collaboration with Aboriginal Community Controlled Health Organisations. It will establish a framework for implementing culturally safe and acceptable wearable programmes for detecting and managing AF in Indigenous adults ≥55 years and older. METHODS: This mixed-methods research will use the Rambaldini model of collective impact, a user-centred, co-design methodology and yarning circles, a recognised Indigenous research methodology to assess the cultural safety, acceptability, feasibility and efficacy of incorporating wearables into standard care for early AF detection. ANALYSIS: Qualitative data will be analysed to create composite descriptions of participants' experiences and perspectives related to comfort, cultural safety, convenience, confidence, family reactions and concerns. Quantitative device data will be extracted and analysed via Statistical Product and Service Solutions (SPSS). CONCLUSION: Prioritising perspectives of older Indigenous adults on using wearables for detecting and monitoring cardiovascular disease will ensure that the findings are effective, relevant and acceptable to those impacted. ETHICS AND DISSEMINATION: Findings will be published in open-source peer-reviewed journals, shared at professional conferences, described in lay terms and made available to the public. The AHMRC HREC Reference Number approved 1135/15.
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Fibrilação Atrial , Dispositivos Eletrônicos Vestíveis , Adulto , Humanos , Fibrilação Atrial/diagnóstico , Povos Indígenas , Coração , Encaminhamento e ConsultaRESUMO
BACKGROUND: Digital health is becoming ubiquitous, and we must ensure equity in access. Indigenous people across most high-income countries typically have not benefited as much as other citizens from usual health care systems and technologies. Despite Aboriginal and Torres Strait Islander people's clear interest in, and enthusiastic use of, new technologies, little research has examined the needs or interests of older Aboriginal and Torres Strait Islander women. OBJECTIVE: This study prioritizes the perspectives of older Aboriginal and Torres Strait Islander women, tapping into their expertise associated with Indigenous ways of knowing, being, and doing, as well as their unique position within their families and communities, to design a model for using digital technologies to improve health for themselves and their families as well as their communities. METHODS: Older Aboriginal and Torres Strait Islander women from 4 partner organizations were recruited for this study. This co-designed qualitative research included citizen scientists in shaping the protocol as well as collecting, analyzing, and interpreting data. We used yarning, an Indigenous research method validated for use in health research with Indigenous people and seen as respectful and culturally safe, as a primary research tool. The use of Indigenous methodologies and our iterative process enabled us to deeply explore and incorporate perspectives from all participants and ensure that the perspectives of Indigenous citizen scientists with lived experience were privileged. The data-checking methods also used a yarning methodology, which ensured that the findings and translational model derived from the findings were validated by the participants. RESULTS: Participants comprised 24 Aboriginal and Torres Strait Islander women aged ≥41 years and including 3 generations that did not grow up with the internet: seniors, baby boomers, and Generation X. The key findings in this research were that older women use various digital technologies to improve health and well-being for themselves and their families as well as their communities. Older Aboriginal women want a culturally sensitive cyberspace that caters specifically to their needs and includes relevant content and functionality that are accessible and efficient. Our translational model highlights the conditions necessary for anyone to use digital health technologies, summarizes the essential elements needed to promote equity in digital health, and illuminates the unmet needs and requirements for older Aboriginal and Torres Strait Islander women to fully benefit from digital health technologies. CONCLUSIONS: Health is a fundamental right. As we move toward greater reliance on digital health solutions, we must recognize and address the concerns of the smaller populations of people who differ in their needs. We must urgently address the financial, connectivity, and other limiting factors highlighted by older Aboriginal and Torres Strait Islander women in this study that limit equitable access to digital health tools. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1177/20552076221084469.
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Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Assistência à Saúde Culturalmente Competente , Atenção à Saúde , Tecnologia Digital , Equidade em Saúde , Adulto , Idoso , Feminino , Humanos , Pessoa de Meia-Idade , Pesquisa Qualitativa , Participação da ComunidadeRESUMO
Genomics research related to Indigenous people has been at worst exploitative and at best, retrospectively on a journey to improve effective engagement of Indigenous individuals and communities. Genomics can positively impact all stages of clinical management, and to improve genomic effectiveness researchers aggregate genomic data from diverse global sub-populations, such as shared ancestry groupings, as people within these groupings will have a greater proportion of shared DNA traits. While genomics is already being used worldwide to improve lives, its utility and effectiveness has not been maximized for individuals with Indigenous ancestry. Several large datasets of human genetic variation have been made publicly available, of which the most widely used is the Genome Aggregation Database (gnomAD), but none of these databases currently contain any population-specific data for Indigenous populations. There are many reasons why Indigenous people have been largely left out of genomics research and, because of this, miss out on the benefits offered. It is also clear that if research is to be effective, it needs to be done 'with' and not 'on' Indigenous communities. This systematic review of the literature regarding Indigenous peoples (in high income countries) and genomics aims to review the existing literature and identify areas of strength and weakness in study design and conduct, focusing on the effectiveness of Indigenous community engagement.
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Genômica , Povos Indígenas , Humanos , Países Desenvolvidos , Estudos Retrospectivos , Povos Indígenas/genética , Bases de Dados FactuaisRESUMO
OBJECTIVE: To evaluate if existing Australian public policy related to screening, diagnosis, treatment and follow up care for breast cancer addresses the needs of and outcomes for Indigenous1 women? METHODS: This review of policy employed a modified Delphi method via an online panel of experts (n = 13), who were purposively recruited according to experience and expertise. A series of online meetings and online surveys were used for data collection. The aims of the study were to: Identify all existing and current breast cancer policy in Australia; Analyse the extent to which consideration of Indigenous peoples is included in the development, design and implementation of the policy; and Identify policy gaps and make recommendations as to how they could be addressed. The policies were evaluated using 'A Guide to Evaluation under the Indigenous Evaluation Strategy, 2020'. RESULTS: A list of current breast cancer policies (n = 7) was agreed and analysed. Five draft recommendations to improve breast cancer outcomes for Indigenous women were developed and refined by the panel. CONCLUSIONS: Current breast cancer policy in Australia does not address the needs of Indigenous women and requires change to improve outcomes.
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Neoplasias da Mama , Serviços de Saúde do Indígena , Humanos , Feminino , Neoplasias da Mama/terapia , Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Austrália , Inquéritos e Questionários , PolíticasRESUMO
BACKGROUND: Incidence of sexually transmissible infections (STI) amongst young Aboriginal people in Australia are significantly higher compared to the wider population. Low levels of engagement with public sexual health services also exacerbates health inequity. This study sought to understand the access barriers facing Aboriginal People with local Sexual Health services from the perspective of local clinicians within Western Sydney. METHODS: Six clinicians (six registered nurses, two medical practitioners) and two social workers, working in a Sexual Health service, were interviewed using a semi-structure questionnaire. Interviews were audio recorded and transcribed verbatim. Interview texts were analysed using NVIVO 12 and a thematic analysis undertaken. RESULTS: Thematic analysis revealed three broad themes: personal, practical, and programmatic. Clinicians believed the involvement of Aboriginal people in service delivery would contribute to greater inclusion and more culturally competent services. Clinicians also considered that young Aboriginal people were unaware of the risks of untreated STIs, and that greater STI-related education regarding risk and prevention may reduce STI incidence and improve participation in services. Clinicians believed that culturally-competent STI education would be more effective if co-designed with the local Aboriginal community. Clinicians identified that Aboriginal young people were concerned about their privacy when accessing services, and that barriers could be reduced by greater community engagement in service delivery design and quality improvement initiatives. CONCLUSION: The three themes identified in this study provide guidance for service providers about approaches that may enhance the access, participation, and cultural safety sexual health services for Aboriginal clients.
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Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Infecções Sexualmente Transmissíveis , Humanos , Adolescente , Austrália/epidemiologia , Infecções Sexualmente Transmissíveis/diagnóstico , Infecções Sexualmente Transmissíveis/epidemiologia , Infecções Sexualmente Transmissíveis/prevenção & controle , Comportamento Sexual , Pessoal de SaúdeRESUMO
BACKGROUND: Breast cancer continues to be the second most diagnosed cancer overall and the most diagnosed cancer for women in Australia. While mortality rates overall have declined in recent years, Indigenous women continue to be diagnosed at more marginal rates (0.9 times) and are more likely to die (1.2 times). The literature provides a myriad of reasons for this; however, the voices of Indigenous women are largely absent. This study sets out to understand what is happening from the perspectives of Australian Indigenous women with a view to charting culturally safer pathways that improve participation in screening and treatment by Indigenous women. METHODS: This co-design study was conducted using semi-structured, in-depth interviews and focus group discussions. Recruitment of study participants was via snowball sampling. Participants were subsequently consented into the study through the Aboriginal Health Service and the research team. Interviews were audio recorded and transcribed verbatim, and data coded in NVivo12 using inductive thematic analysis. RESULTS: A total of 21 Indigenous women and 14 health service providers were interviewed predominantly from the same regional/rural area in NSW, with a small proportion from other states in Australia. Six major themes were identified: Access, Awareness, Community and Family, Lack of control, Negative feelings and associations and Role of services. CONCLUSION: To improve access and participation of Indigenous women and ultimately improve mortality rates, breast cancer services must explicitly address cultural and community needs.
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Neoplasias da Mama , Serviços de Saúde do Indígena , Feminino , Humanos , Austrália/epidemiologia , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/terapia , Detecção Precoce de Câncer , Povos Aborígenes Australianos e Ilhéus do Estreito de TorresRESUMO
BACKGROUND: Ear and hearing care programs are critical to early detection and management of otitis media (or middle ear disease). Otitis media and associated hearing loss disproportionately impacts First Nations children. This affects speech and language development, social and cognitive development and, in turn, education and life outcomes. This scoping review aimed to better understand how ear and hearing care programs for First Nations children in high-income colonial-settler countries aimed to reduce the burden of otitis media and increase equitable access to care. Specifically, the review aimed to chart program strategies, map the focus of each program against 4 parts of a care pathway (prevention, detection, diagnosis/management, rehabilitation), and to identify the factors that indicated the longer-term sustainability and success of programs. METHOD: A database search was conducted in March 2021 using Medline, Embase, Global Health, APA PsycInfo, CINAHL, Web of Science Core Collection, Scopus, and Academic Search Premier. Programs were eligible or inclusion if they had either been developed or run at any time between January 2010 to March 2021. Search terms encompassed terms such as First Nations children, ear and hearing care, and health programs, initiatives, campaigns, and services. RESULTS: Twenty-seven articles met the criteria to be included in the review and described a total of twenty-one ear and hearing care programs. Programs employed strategies to: (i) connect patients to specialist services, (ii) improve cultural safety of services, and (iii) increase access to ear and hearing care services. However, program evaluation measures were limited to outputs or the evaluation of service-level outcome, rather than patient-based outcomes. Factors which contributed to program sustainability included funding and community involvement although these were limited in many cases. CONCLUSION: The result of this study highlighted that programs primarily operate at two points along the care pathway-detection and diagnosis/management, presumably where the greatest need lies. Targeted strategies were used to address these, some which were limited in their approach. The success of many programs are evaluated as outputs, and many programs rely on funding sources which can potentially limit longer-term sustainability. Finally, the involvement of First Nations people and communities typically only occurred during implementation rather than across the development of the program. Future programs should be embedded within a connected system of care and tied to existing policies and funding streams to ensure long term viability. Programs should be governed and evaluated by First Nations communities to further ensure programs are sustainable and are designed to meet community needs.
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Assistência à Saúde Culturalmente Competente , Perda Auditiva , Povos Indígenas , Otite Média , Criança , Humanos , Perda Auditiva/diagnóstico , Perda Auditiva/epidemiologia , Perda Auditiva/etnologia , Perda Auditiva/terapia , Povos Indígenas/estatística & dados numéricos , Fatores de Tempo , Otite Média/diagnóstico , Otite Média/epidemiologia , Otite Média/etnologia , Otite Média/terapia , Disparidades em Assistência à Saúde/etnologia , Países Desenvolvidos/economia , Países Desenvolvidos/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/economia , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Assistência à Saúde Culturalmente Competente/etnologia , Assistência à Saúde Culturalmente Competente/estatística & dados numéricosRESUMO
BACKGROUND: Research associated with digital health technologies similar to the technologies themselves has proliferated in the last 2 decades. There are calls for these technologies to provide cost-effective health care for underserved populations. However, the research community has also underserved many of these populations. Older Indigenous women are one such segment of the population. OBJECTIVE: Our objective is to systematically review the literature to consolidate and document what we know about how older Indigenous women living in high-income countries use digital health technology to enhance their health. METHODS: We analyzed the peer-reviewed literature by systematically searching 8 databases in March 2022. We included studies published between January 2006 and March 2022 with original data specific to older Indigenous women from high-income countries that reported on the effectiveness, acceptability, and usability of some user-focused digital health technology. We incorporated 2 measures of quality for each study. We also conducted a thematic analysis and a lived experience analysis, which examined each paper from the perspectives of older Indigenous women. We followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines in this study. RESULTS: Three papers met the inclusion criteria. The key findings were that older Indigenous women do not see themselves reflected in mainstream health messaging or other digital health offerings. They prefer an approach that considers their uniqueness and diversity. We also identified 2 significant gaps in the literature. First, research reporting on older Indigenous women from high-income countries' experiences with digital health technology is minimal. Second, the limited research related to older Indigenous women has not consistently engaged Indigenous people in the research process or governance. CONCLUSIONS: Older Indigenous women want digital health technologies to respond to their needs and preferences. Research is needed to understand their requirements and preferences to ensure equity as we move toward greater adoption of digital health technology. Engaging older Indigenous women throughout the research is essential to ensuring that digital health products and services are safe, usable, effective, and acceptable for older Indigenous women.
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Atenção à Saúde , Países Desenvolvidos , Tecnologia Digital , Povos Indígenas , Feminino , Humanos , Tecnologia BiomédicaRESUMO
BACKGROUND: Despite the high incidence of chronic obstructive pulmonary disease (COPD) in Aboriginal communities in Australia, Aboriginal Health Workers (AHWs) have limited knowledge about effective management. AIM: To evaluate an online education program, co-designed with AHWs and exercise physiologists (EPs) or physiotherapists (PTs), to increase knowledge about COPD and its management. METHODS: AHWs and EPs from four Aboriginal Community Controlled Health Services (ACCHS) were recruited. An Aboriginal researcher and a physiotherapist experienced in COPD management and pulmonary rehabilitation (PR) delivered seven online education sessions. These sessions used co-design principles and an Aboriginal pedagogy framework '8 Ways of learning', which incorporates Aboriginal protocols and perspectives to realign teaching techniques and strengthen learning outcomes. Topics covered were: How the lungs work; What is COPD; Medications and how to use inhalers and COPD Action Plans; Why exercise is important; Managing breathlessness; Healthy eating; Managing anxiety and depression. After each session, AHWs with support from EPs, co-designed education 'yarning' resources using Aboriginal ways of learning to ensure topics were culturally safe for the local Aboriginal community and practiced delivering this at the following session. At the end of the program participants completed an anonymous online survey (5-point Likert scale) to assess satisfaction, and a semi-structured interview about their experience of the online education. RESULTS: Of the 12 participants, 11 completed the survey (7 AHWs, 4 EPs). Most (90%) participants strongly agreed or agreed that the online sessions increased knowledge and skills they needed to support Aboriginal patients with COPD. All (100%) participants felt: their cultural perspectives and opinions were valued and that they were encouraged to include cultural knowledge. Most (91%) reported that delivering their own co-designed yarning scripts during the online sessions improved their understanding of the topics. Eleven participants completed semi-structured interviews about participating in online education to co-design Aboriginal 'yarning' resources. Themes identified were: revealing the Aboriginal lung health landscape; participating in online learning; structuring the online education sessions; co-designing with the facilitators. CONCLUSIONS: Online education using co-design and 8 Ways of learning was rated highly by AHWs and EPs for improving COPD knowledge and valuing cultural perspectives. The use of co-design principles supported the cultural adaptation of COPD resources for Aboriginal people with COPD. TRIAL REGISTRATION: PROSPERO (registration number: CRD42019111405).
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Serviços de Saúde do Indígena , Pneumopatias , Doença Pulmonar Obstrutiva Crônica , Humanos , Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Pneumopatias/terapia , Doença Pulmonar Obstrutiva Crônica/terapia , Educação de Pacientes como AssuntoRESUMO
Background: Aboriginal and Torres Strait Islander people avidly use technology for a variety of purposes. Digital health technologies offer a new way to build on Aboriginal and Torres Strait Islander peoples propensity for early adoption and innovation with technology. Only limited research has focused on mature aged adults in non-urban locations as partners in digital health research and there is no research related to wearables for health tracking for this cohort. Objective: This paper provides insights into mature aged Aboriginal and Torres Strait Islander adults interest, use and trust of social media, apps and wearables to gain health information and manage health. Methods: This cross-sectional survey study was co-designed and co-implemented with Aboriginal Community Controlled Health Services (ACCHS) in three locations in New South Wales, Australia. The 13-item survey was administered via a semi-structured interview. Results: Aboriginal and Torres Strait Islander adults (n = 78), in regional, rural and remote locations indicated their interest in and use of apps and wearables for health purposes. Mature aged participants, particularly women, used Facebook, ACCHS websites and YouTube for acquiring health-related information which they then shared online and in real life with a diversity of family, friends and colleagues. Conclusions: Aboriginal and Torres Strait Islander people are using digital health technologies to acquire and share health information and want to use apps and wearables for health management. Co-designed research enables a greater understanding of the diverse needs for different cohorts and informs culturally responsible design. Broader use of co-design will foster effective user-focused digital health communication and health-management.
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BACKGROUND: in this protocol we outline a method of working alongside Aboriginal communities to learn about and facilitate improvement in the oral health habits in Aboriginal adolescents. By facilitating positive oral health in Aboriginal adolescents, we hope to achieve lifelong improvement in oral health and general wellbeing. METHODS: this paper outlines a co-design methodology through which researchers and Aboriginal communities will work together to create a custom oral healthcare program aimed at Aboriginal adolescents. Researchers, a youth advisory group, Aboriginal community-controlled health services and three regional NSW communities will together devise an oral health strategy focused on five components: application of topical fluoride, increasing water consumption, improving nutrition, daily toothbrushing, and enhancing social and emotional wellbeing. Capacity building is a key outcome of this program. DISCUSSION: as the gap in health status between Aboriginal and non-Aboriginal people remains wide, it is clear that new approaches and attitudes are needed in Aboriginal public health research. This protocol is representative of this shifting approach; giving power to Aboriginal communities who seek to have sovereignty and self-determination over their healthcare. TRIAL REGISTRATION: TRN: ISRCTN15496753 Date of registration: 20 October 2021.
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Serviços de Saúde do Indígena , Havaiano Nativo ou Outro Ilhéu do Pacífico , Adolescente , Fortalecimento Institucional , Serviços de Saúde Comunitária , Atenção à Saúde , Humanos , Saúde BucalRESUMO
BACKGROUND: Strong evidence exists for the benefits of pulmonary rehabilitation (PR) for people with chronic obstructive pulmonary disease (COPD), however the availability of culturally safe PR for Aboriginal and Torres Strait Islander (Indigenous) Peoples is limited. The study aims to determine whether PR can be implemented within Aboriginal Community Controlled Health Services (ACCHS) to improve outcomes for Indigenous people with COPD. METHODS: Multi-centre cohort study using participatory action research guided by the Knowledge-to-Action Framework. ACCHS supportive of enhancing services for chronic lung disease will be recruited. Aboriginal Health Workers (AHW) and the exercise physiologist (EP) or physiotherapist (PT) within these ACCHS will attend a workshop aimed at increasing knowledge and skills related to management of COPD and the provision of PR. Indigenous people with COPD will be invited to attend an 8-week, twice weekly, supervised PR program. OUTCOMES: AHW, EP/PT knowledge, skills and confidence in the assessment and management of COPD will be measured before and immediately after the BE WELL workshop and at 3, 6 and 12 months using a survey. PR participant measures will be exercise capacity (6-minute walk test (6MWT), health-related quality of life and health status at commencement and completion of an 8-week PR program. Secondary outcomes will include: number, length and cost of hospitalisations for a COPD exacerbation in 12-months prior and 12-months post PR; local contextual factors influencing implementation of PR; specific respiratory services provided by ACCHS to manage COPD prior to project commencement and at project completion. Repeated measures ANOVA will be used to evaluate changes in knowledge and confidence over time of AHWs and EP/PTs. Paired t-tests will be used to evaluate change in patient outcomes from pre- to post-PR. Number of hospital admissions in the 12 months before and after the PR will be compared using unpaired t-tests. DISCUSSION: Pulmonary rehabilitation is an essential component of best-practice management of COPD and is recommended in COPD guidelines. Indigenous peoples have limited access to culturally safe PR programs. This study will evaluate whether PR can be implemented within ACCHS and improve outcomes for Indigenous people with COPD. Trial registration Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12617001337369, Registered 2nd September 2017 https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373585&isClinicalTrial=False.
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Serviços de Saúde do Indígena , Doença Pulmonar Obstrutiva Crônica , Austrália , Estudos de Coortes , Gerenciamento Clínico , Humanos , Pulmão , Havaiano Nativo ou Outro Ilhéu do Pacífico , Doença Pulmonar Obstrutiva Crônica/reabilitação , Qualidade de VidaRESUMO
BACKGROUND: Co-design is the latest buzzword in healthcare services and research and is ubiquitous in Australian funding grants and policy documents. There are no standards for what constitutes co-design and it is often confused with less collaborative processes such as consultation. Collective impact is a co-design tool used for complex and entrenched problems. It uses a systematic approach and requires power and resource sharing. We applied collective impact to three research projects with Aboriginal communities. This paper explores how collective impact can enhance participation and outcomes in healthcare services and research. METHODS: We evaluated the collective impact process and outcomes in three translational health research projects with Aboriginal people and communities using a case study approach. We adapted the model using an iterative co-design approach. RESULTS: We adapted the collective impact model in three ways: 1) replaced the precondition of 'problems that are urgent' with 'problems that are complex and entrenched'; 2) added to the 'common agenda' the requirement to establish a planned exit and long-term sustainability strategy from the outset; and 3) added the delivery of a public policy outcome as a result of the collective impact process. CONCLUSIONS: Aboriginal and Torres Strait Islander health is an important public policy priority that requires new and different approaches to service delivery and research. This study adapted the collective impact approach and developed the Rambaldini model through three translational health research case studies and found that a modified collective impact approach is an effective tool for engagement and outcomes.
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Serviços de Saúde do Indígena , Austrália , Humanos , Havaiano Nativo ou Outro Ilhéu do PacíficoRESUMO
Background: Digital health offers a fresh avenue to address health disparities experienced by Aboriginal and Torres Strait Islanders. Despite the scant evidence about how Aboriginal and Torres Strait Islanders access and use health technology, the Australian government has prioritised research that uses technology to enable people to manage their health and promote better health outcomes. Older Aboriginal and Torres Strait Islander women are cultural leaders in their communities, enabling them to provide valuable insights about the safety and efficacy of health care messaging. However, no research has engaged older Aboriginal and Torres Strait Islander, women as partners in digital health research. Objective: This paper provides a protocol for co-designed translational research that privileges older Aboriginal & Torres Strait Islander women's cultural expertise to design and test a framework for accessible, culturally safe and feasible digital health technologies. Methods: This mixed-methods research project will use the collective impact approach, a user-centred, co-design methodology and yarning circles, a recognised Indigenous research methodology. A series of yarning circles with three different communities will elucidate enablers and barriers to access health information; co-create a framework clarifying what works and does not work for digital health promotion in their communities; and test the framework by co-creating three digital health information programs. Conclusions: Privileging the cultural expertise of older Aboriginal and Torres Strait Islander women will provide a novel perspective and vital guidance that end users and developers can trust and rely upon to create and evaluate culturally safe and efficacious digital health promotion programs.
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Many rural communities in New South Wales (NSW), Australia, have poor-quality water supplies. The lack of a palatable alternative increases the risk of the high consumption of sugar-sweetened beverages, a significant contributor to adverse health outcomes. This disproportionately effects Aboriginal people living in these towns, who are also profoundly affected by the social determinants of health. Therefore, examining health inequalities linked to water access is important. This study investigated the availability of drinking water fountains in rural and remote communities in NSW. Telephone interviewer-assisted surveys were conducted with 32 representatives from local government councils or Local Aboriginal Land Councils in NSW from communities with a population of <5000 and an Aboriginal population of at least 3%. The results were analysed descriptively. Towns and communities with a higher population of Aboriginal people and lower median weekly income were less likely to have access to free refrigerated and filtered water within the community or at local schools compared with towns and communities with a lower Aboriginal population and higher median weekly income. The availability of free, clean and refrigerated water in rural and remote communities is critical to reducing the consumption of sugar-sweetened beverages and the promotion of water as the preferred drink.