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Managing genetic disease using medically assisted reproductive technology is increasingly promoted as a feasible option, given revolutionary advances in genomics. Far less attention has been directed to the issue of whether there is equitable access to this option. Context and circumstance determine equitable access; however, reporting has drawn overwhelmingly from affluent Anglo-western populations in developed countries. The experiences of poorer, less educated subpopulations within affluent countries and populations in less developed countries are underreported. The ability of consumers to understand the opportunities and risks of medically assisted reproductive technology is likewise not well described in the literature despite significant technological complexity and evidence that genetic disease may be overrepresented within some disadvantaged population groups. Equity is achieved by identifying barriers and allocating appropriate resources to enable understanding and access. In the case of utilising medically assisted technology, social and power relationships, regulations, and the presumptions of authority figures and policymakers reduce equitable access. Physical or cultural marginalisation from mainstream health services may result in reduced access to genetic and prenatal testing, in-vitro fertilisation and genetic screening of embryos necessary for medically assisted reproduction. Cost and regulatory frameworks can likewise limit opportunities to engage with services. Moreover, the quality of the information provided to prospective users of the technology and how it is received governs understanding of prevention and inhibits adequately informed choice. Best practice care and adequately informed choice can only be achieved by conscientiously attending to these accessibility issues. Deep engagement with at-risk people and critical reflection on mainstream accepted standpoints is required. This paper outlines issues associated with engaging with medically assisted reproduction encountered by Aboriginal families living with Machado-Joseph Disease in some of the most remote areas of Australia. It is the right of these families to access such technologies regardless of where they live. Current barriers to access raise important questions for service providers with implications for practice as new technologies increasingly become part of standard medical care. [ABSTRACT FROM AUTHOR]

While the health of and healthcare use by migrants has received significant scholarly and policy attention in Australia, current debates highlight that a critical examination of the theoretical underpinnings of these inquiries and responses is needed. We conducted a systematic review and critical interpretive synthesis (CIS) to critically examine how the policy and scholarly literature conceptualises migrants' interactions with and experiences of the Australian health system. Guided by PRISMA, we searched for literature without imposing any limits. We also searched key State and Federal Government websites for relevant policy documents. Our initially broad inclusion criteria became refined as the CIS progressed. We prioritised the likely relevance and theoretical contribution of the papers to our inquiry over methodological quality. The CIS of 104 papers revealed that the Australian scholarly literature and policy documents consistently homogenise and reduce migrants according to an assumed, (1) cultural identity, (2) linguistic affiliation, and/or (3) broad geographic origin. Based on these three critiques and drawing on the theoretical literature, we propose a synthesising argument on how the Australian literature could better conceptualise migrants' experiences of the Australian health system. We contend that both research and policy should explicitly recognise and engage with the multifaceted and shifting ways that migrants define themselves, generally, and during their encounters with destination country health systems. Engagement with this notion is necessary for also understanding how aspects of migrants' identities are dynamically co-constructed during their interactions with the health system. These understandings have implications for improving the design and implementation of policies and programs directed at improving the responsiveness of Australia's health system to the needs and expectations of migrant communities specifically, and destination countries broadly. [ABSTRACT FROM AUTHOR]

Background: Inequitable access to primary health care (PHC) remains a problem for most western countries. Failure to scale up effective interventions has been due, in part, to a failure to share the logic and essential elements of successful programs. The aim of this paper is to describe what we learned about improving access to PHC for vulnerable groups across multiple sites through use of a common theory-based program logic model and a common evaluation approach. This was the IMPACT initiative. Methods: IMPACT's evaluation used a mixed methods design with longitudinal (pre and post) analysis of six interventions. The analysis for this paper included four of the six sites that met study criteria. These sites were located in Canada (Alberta, Quebec and Ontario) and Australia (New South Wales). Using the overarching logic model, unexpected findings were reviewed, and alternative explanations were considered to understand how the mechanisms of each intervention may have contributed to results. Results: Each site addressed their local access problem with different strategies and from different starting points. All sites observed changes in patient abilities to access PHC and provider access capabilities. The combination of intended and observed consequences for consumers and providers was different at each site, but all sites achieved change in both consumer ability and provider capability, even in interventions where there was no activity targeting provider behaviors. Discussion: The model helped to identify, explore and synthesize intended and unintended consequences of four interventions that appeared to have more differences than similarities. Similar outcomes for different interventions and multiple impacts of each intervention on abilities were observed, implying complex causal pathways. Conclusions: All the interventions were a low-cost incremental attempt to address unmet health care needs of vulnerable populations. Change is possible; sustaining change may be more challenging. Access to PHC requires attention to both patient abilities and provider characteristics. The logic model proved to be a valuable heuristic tool for defining the objectives of the interventions, evaluating their impacts, and learning from the comparison of 'cases'. [ABSTRACT FROM AUTHOR]

Background: Given the persistence of Indigenous health inequities across national contexts, many countries have adopted strategies to improve the health of Indigenous peoples. Governmental recognition of the unique health needs of Indigenous populations is necessary for the development of targeted programs and policies to achieve universal health coverage. At the same time, the participation of Indigenous peoples in decision-making and program and policy design helps to ensure that barriers to health services are appropriately addressed and promotes the rights of Indigenous peoples to self-determination. Due to similar patterns of Indigenous health and health determinants across borders, there have been calls for greater global collaboration in this field. However, most international studies on Indigenous health policy link Anglo-settler democracies (Canada, Australia, Aotearoa/New Zealand and the United States), despite these countries representing a small fraction of the world's Indigenous people. Aim: This paper examines national-level policy in Australia, Brazil, Chile and New Zealand in relation to governmental recognition of differential Indigenous health needs and engagement with Indigenous peoples in health. The paper aims to examine how Indigenous health needs and engagement are addressed in national policy frameworks within each of the countries in order to contribute to the understanding of how to develop pro-equity policies within national health care systems. Methods: For each country, a review was undertaken of national policies and legislation to support engagement with, and participation of, Indigenous peoples in the identification of their health needs, development of programs and policies to address these needs and which demonstrate governmental recognition of differential Indigenous health needs. Government websites were searched as well as the following databases: Google, OpenGrey, CAB Direct, PubMed, Web of Science and WorldCat. Findings: Each of the four countries have adopted international agreements regarding the engagement of Indigenous peoples in health. However, there is significant variation in the extent to which the principles laid out in these agreements are reflected in national policy, legislation and practice. Brazil and New Zealand both have established national policies to facilitate engagement. In contrast, national policy to enable engagement is relatively lacking in Australia and Chile. Australia, Brazil and New Zealand each have significant initiatives and policy structures in place to address Indigenous health. However, in Brazil this is not necessarily reflected in practice and although New Zealand has national policies these have been recently reported as insufficient and, in fact, may be contributing to health inequity for Māori. In comparison to the other three countries, Chile has relatively few national initiatives or policies in place to support Indigenous engagement or recognise the distinct health needs of Indigenous communities. Conclusions: The adoption of international policy frameworks forms an important step in ensuring that Indigenous peoples are able to participate in the formation and implementation of health policy and programs. However, without the relevant principles being reflected in national legislature, international agreements hold little weight. At the same time, while a national legislative framework facilitates the engagement of Indigenous peoples, such policy may not necessarily translate into practice. Developing multi-level approaches that improve cohesion between international policy, national policy and practice in Indigenous engagement in health is therefore vital. Given that each of the four countries demonstrate strengths and weaknesses across this causal chain, cross-country policy examination provides guidance on strengthening these links. [ABSTRACT FROM AUTHOR]

Background: In hospitals globally, patient centred communication is difficult to practice, and interpreters are underused. Low uptake of interpreters is commonly attributed to limited interpreter availability, time constraints and that interpreter-medicated communication in healthcare is an aberration. In Australia's Northern Territory at Royal Darwin Hospital, it is estimated around 50% of Aboriginal patients would benefit from an interpreter, yet approximately 17% get access. Recognising this contributes to a culturally unsafe system, Royal Darwin Hospital and the NT Aboriginal Interpreter Service embedded interpreters in a renal team during medical ward rounds for 4 weeks in 2019. This paper explores the attitudinal and behavioural changes that occurred amongst non-Indigenous doctors and Aboriginal language interpreters during the pilot. Methods: This pilot was part of a larger Participatory Action Research study examining strategies to achieve culturally safe communication at Royal Darwin Hospital. Two Yolŋu and two Tiwi language interpreters were embedded in a team of renal doctors. Data sources included interviews with doctors, interpreters, and an interpreter trainer; reflective journals by doctors; and researcher field notes. Inductive thematic analysis, guided by critical theory, was conducted. Results: Before the pilot, frustrated doctors unable to communicate effectively with Aboriginal language speaking patients acknowledged their personal limitations and criticised hospital systems that prioritized perceived efficiency over interpreter access. During the pilot, knowledge of Aboriginal cultures improved and doctors adapted their work routines including lengthening the duration of bed side consults. Furthermore, attitudes towards culturally safe communication in the hospital changed: doctors recognised the limitations of clinically focussed communication and began prioritising patient needs and interpreters who previously felt unwelcome within the hospital reported feeling valued as skilled professionals. Despite these benefits, resistance to interpreter use remained amongst some members of the multi-disciplinary team. Conclusions: Embedding Aboriginal interpreters in a hospital renal team which services predominantly Aboriginal peoples resulted in the delivery of culturally competent care. By working with interpreters, non-Indigenous doctors were prompted to reflect on their attitudes which deepened their critical consciousness resulting in behaviour change. Scale up of learnings from this pilot to broader implementation in the health service is the current focus of ongoing implementation research. [ABSTRACT FROM AUTHOR]

Background: Indigenous children living in high income countries have a consistently high prevalence of mental health problems. We aimed to identify psychosocial risk and protective factors for mental health in this setting. Methods: A systematic review of studies published between 1996 and 2016 that quantitatively evaluated the association between psychosocial variables and mental health among Indigenous children living in high income countries was conducted. Psychosocial variables were grouped into commonly occurring domains. Individual studies were judged to provide evidence for an association between a domain and either good mental health, poor mental health, or a negligible or inconsistent association. The overall quality of evidence across all studies for each domain was assessed using the Grades of Recommendation, Assessment, Development, and Evaluation (GRADE) guidelines. Results: Forty-seven papers were eligible (mainland US 30 [64%], Canada 8 [17%], Australia 7 [15%], Hawaii 4 [9%]), including 58,218 participants aged 4-20 years. Most papers were cross-sectional (39, 83%) and measured negative mental health outcomes (41, 87%). Children's negative cohesion with their families and the presence of adverse events appeared the most reliable predictors of increased negative mental health outcomes. Children's substance use, experiences of discrimination, comorbid internalising symptoms, and negative parental behaviour also provided evidence of associations with negative mental health outcomes. Positive family and peer relationships, high self-esteem and optimism were associated with increased positive mental health outcomes. Conclusions: Quantitative research investigating Indigenous children's mental health is largely cross-sectional and focused upon negative outcomes. Indigenous children living in high income countries share many of the same risk and protective factors associated with mental health. The evidence linking children's familial environment, psychological traits, substance use and experiences of discrimination with mental health outcomes highlights key targets for more concerted efforts to develop initiatives to improve the mental health of Indigenous children. [ABSTRACT FROM AUTHOR]

Introduction: The use of social media and digital technologies has grown rapidly in Australia and around the world, including among Indigenous young people who face social disadvantage. Given the potential to use social media for communication, providing information and as part of creating and responding to social change, this paper explores published literature to understand how Indigenous Australian youth use digital technologies and social media, and its positive and negative impacts. Methods: Online literature searches were conducted in three databases: PubMed, Google Scholar and Informit in August 2014; with further searches of additional relevant databases (Engineering Village; Communication & mass media complete; Computers & applied sciences complete; Web of Science) undertaken in May 2015. In addition, relevant literature was gathered using citation snowballing so that additional peer-reviewed and grey literature was included. Articles were deemed relevant if they discussed social media and/or digital technologies and Indigenous Australians. After reading and reviewing all relevant articles, a thematic analysis was used to identify overall themes and identify specific examples. Results: A total of 22 papers were included in the review. Several major themes were identified about how and why Indigenous young people use social media: identity, power and control, cultural compatibility and community and family connections. Examples of marketing for health and health promotion approaches that utilize social media and digital technologies were identified. Negative uses of social media such as cyber bullying, cyber racism and the exchange of sexually explicit content between minors are common with limited approaches to dealing with this at the community level. Discussion: Strong cultural identity and community and family connections, which can be enhanced through social media, are linked to improved educational and health outcomes. The confidence that Indigenous young people demonstrate when approaching the use of social media invites its further use, including in arenas where this group may not usually participate, such as in research. Conclusions: Future research could examine ways to minimise the misuse of social media while maximising its positive potential in the lives of Indigenous young people. Future research should also focus on the positive application of social media and showing evidence in health promotion interventions in order to reduce health inequities between Indigenous and non-Indigenous young people. [ABSTRACT FROM AUTHOR]

Introduction: Healthcare organisations serve clients from diverse Indigenous and other ethnic and racial groups on a daily basis, and require appropriate client-centred systems and services for provision of optimal healthcare. Despite advocacy for systems-level approaches to cultural competence, the primary focus in the literature remains on competency strategies aimed at health promotion initiatives, workforce development and student education. This paper aims to bridge the gap in available evidence about systems approaches to cultural competence by systematically mapping key concepts, types of evidence, and gaps in research. Methods: A literature search was completed as part of a larger systematic search of evaluations and measures of cultural competence interventions in health care in Canada, the United States, Australia and New Zealand. Seventeen peer-reviewed databases, 13 websites and clearinghouses, and 11 literature reviews were searched from 2002 to 2015. Overall, 109 studies were found, with 15 evaluating systems-level interventions or describing measurements. Thematic analysis was used to identify key implementation principles, intervention strategies and outcomes reported. Results: Twelve intervention and three measurement studies met our inclusion criteria. Key principles for implementing systems approaches were: user engagement, organisational readiness, and delivery across multiple sites. Two key types of intervention strategies to embed cultural competence within health systems were: audit and quality improvement approaches and service-level policies or strategies. Outcomes were found for organisational systems, the client/practitioner encounter, health, and at national policy level. Discussion and implications: We could not determine the overall effectiveness of systems-level interventions to reform health systems because interventions were context-specific, there were too few comparative studies and studies did not use the same outcome measures. However, examined together, the intervention and measurement principles, strategies and outcomes provide a preliminary framework for implementation and evaluation of systems-level interventions to improve cultural competence. Identified gaps in the literature included a need for cost and effectiveness studies of systems approaches and explication of the effects of cultural competence on client experience. Further research is needed to explore the extent to which cultural competence improves health outcomes and reduces ethnic and racially-based healthcare disparities. [ABSTRACT FROM AUTHOR]

Background: Effective implementation can maximise the beneficial impacts of health services. It is therefore important to review implementation in the context of Indigenous populations, who suffer some of the greatest disadvantage within developed countries. This paper analyses Aboriginal and Torres Strait Islander (hereafter Indigenous) Australian health implementation reviews to examine the research question: What is the effectiveness of implementation, as reported in the Indigenous Australian health implementation literature? Methods: Eight databases were systematically searched to find reviews of Indigenous Australian health services and/or programs where implementation was the focus. Search terms included Aborigin* OR Indigen* OR Torres AND health AND service OR program* OR intervention AND implementation (or like terms) AND Australia AND review. Review findings were analysed through the lens of the PARiHS framework which theorises that successful implementation occurs through the interplay of evidence, context and facilitation. The review followed Cochrane methods but was not registered. Results: Six reviews were found; these encompassed 107 studies that considered health service/program implementation. Included studies described many health services implemented across Australia as not underpinned by rigorous impact evaluation; nevertheless implementers tended to prefer evidence-based interventions. Effective implementation was supported by clearly defined management systems, employment of Indigenous health workers as leaders, community control, partnerships, tailoring for diverse places and settings; and active facilitation methods. Short-term funding meant most studies focused on implementation in one site through pilot initiatives. Only two mentioned cost effectiveness. Indigenous Australian studies incorporated two elements not included in the PARiHS reference guide: the value of community control and equity of service provision across sites. Conclusions: Comparison of the Indigenous Australian review findings against the PARiHS reference guide elements suggested a fledgling but growing state of Indigenous implementation research, and considerable scope to improve the effectiveness of implementation. Further research is required to explore Indigenous people's understandings of what is important in healthcare implementation; particularly in relation to the value of community control and equity issues. [ABSTRACT FROM AUTHOR]

Introduction: Australians in rural and remote areas experience poorer health status compared with many metropolitan residents, due partly to inequitable access to primary health care (PHC) services. Building on recent research that identified PHC services which all Australians should be able to access regardless of where they live, this paper aims to define the population thresholds governing which PHC services would be best provided by a resident health worker, and to outline attendant implementation issues. Methods: A Delphi method comprising panellists with expertise in rural, remote and/or Indigenous PHC was used. Five population thresholds reflecting Australia's diverse rural and remote geography were devised. Panellists participated in two electronic surveys. Using a Likert scale, they were asked at what population threshold each PHC service should be provided by a resident health worker. A follow-up focus group identified important underlying principles which guided the consensus process. Results: Response rates were high. The population thresholds for core PHC services provided by a resident worker were less in remote communities compared with rural communities. For example, the population threshold for 'care of the sick and injured,' was ≤ 100 for remote compared with 101-500 for rural communities. For 'mental health', 'maternal/ child health', 'sexual health' and 'public health' services in remote communities the population threshold was 101-500, compared to 501-1000 for rural communities. Principles underpinning implementation included the fundamental importance of equity; consideration of social determinants of health; flexibility, effective expenditure of resources, tailoring services to ensure consumer acceptability, prioritising services according to need, and providing services as close to home as possible. Conclusion: This research can assist policy makers and service planners to determine the population thresholds at which PHC services should be delivered by a resident health worker, to allocate resources and provide services more equitably, and inform consumers about PHC services they can reasonably expect to access in their community. This framework assists in developing a systematic approach to strategies seeking to address existing rural-urban health workforce maldistribution, including the training of generalists as opposed to specialists, and providing necessary infrastructure in communities most in need. [ABSTRACT FROM AUTHOR]

Introduction: In Australia, there is little empirical research of the racial identity of Indigenous children and youth as the majority of the current literature focuses on adults. Furthermore, there are no instruments developed with cultural appropriateness when exploring the identity and self-esteem of the Australian Aboriginal population, especially children. The IRISE_C (Racial Identity and Self-Esteem of children) inventory was developed to explore the elements of racial identity and self-esteem of urban, rural and regional Aboriginal children. This paper describes the development and validation of the IRISE_C instrument with over 250 Aboriginal children aged 8 to 12 years. Methods: A pilot of the IRISE C instrument was combined with individual interviews and was undertaken with 35 urban Aboriginal children aged 8-12 years. An exploratory factor analysis was performed to refine the survey and reduce redundant items in readiness for the main study. In the main study, the IRISE C was employed to 229 Aboriginal children aged 6-13 years across three sites (rural, regional and urban) in Western Australia. An exploratory factor analysis using Principal axis factoring was used to assess the fit of items and survey structure. A confirmatory factor analysis was then employed using LISREL (diagonally weighted least squares) to assess factor structures across domains. Internal consistency and reliability of subscales were assessed using Cronbach's coefficient alpha. Results: The pilot testing identified two key concepts - children's knowledge of issues related to their racial identity, and the importance, or salience, that they attach to these issues. In the main study, factor analyses showed two clear factors relating to: Aboriginal culture and traditions; and a sense of belonging to an Aboriginal community. Principal Axis Factoring of the Knowledge items supported a 2-factor solution, which explained 38.7 % of variance. Factor One (Aboriginal culture) had a Cronbach's alpha of 0.835; Factor 2 (racial identity) had a Cronbach's alpha of 0.800, thus demonstrating high internal reliability of the scales. Conclusion: The IRISE_C has been shown to be a valid instrument useful of exploring the development of racial identity of Australian Aboriginal children across the 8-12 year old age range and across urban, rural and regional geographical locations. [ABSTRACT FROM AUTHOR]

Background: Improving the wellbeing of Indigenous populations is an international priority. Robust research conducted with Aboriginal and Torres Strait Islander peoples is key to developing programs and policies to improve health and wellbeing. This paper aims to quantify the extent of participation in a national longitudinal study of Aboriginal and Torres Strait Islander (Indigenous Australian) children, and to understand the reasons why caregivers participate in the study. Methods: This mixed methods study uses data from Wave 6 of Footprints in Time, the Longitudinal Study of Indigenous Children. We conducted descriptive analysis of quantitative variables to characterise the sample and retention rates. We applied conventional content analysis to 160 caregivers’ open-ended responses to the question, ‘Why do you stay in the study?’, identifying themes and overarching meta-themes. Results: The study has maintained a high retention rate, with 70.4% (n = 1239/1671) of the baseline sample participating in the study’s 6th wave. We identified seven themes related to why participants stay in the study: telling our story, community benefit, satisfaction, tracking Study Child’s progress, study processes, receiving study gifts, and valuing what the study stands for. These related to two meta-themes: reciprocity, and trust and connection. Caregivers reported that participation was associated with benefits for their family and community as well as for the study. They identified specific features of the Footprints in Time study design that built and maintained trust and connection between participants and the study. Conclusions: Our findings support the assertion that Aboriginal and Torres Strait Islander people want to be involved in research when it is done ‘the right way’. Footprints in Time has successfully recruited and retained the current-largest cohort of Aboriginal and Torres Strait Islander children in Australia through the use of participatory research methodologies, suggesting effective study implementation and processes. Participants indicated ongoing commitment to the study resulting from perceptions of reciprocity and development of trust in the study. Footprints in Time can serve as a successful model of Aboriginal and Torres Strait Islander health research, to promote good research practice and provides lessons for research with other Indigenous populations. [ABSTRACT FROM AUTHOR]