Exploring self-determined solutions to service and system challenges to promote social and emotional wellbeing in Aboriginal and Torres Strait Islander people: a qualitative study.

Introduction: Many Aboriginal and Torres Strait Islander people living on Kaurna Country in northern Adelaide experience adverse health and social circumstances. The Taingiwilta Pirku Kawantila study sought to understand challenges facing Aboriginal and Torres Strait Islander communities and identify solutions for the health and social service system to promote social and emotional wellbeing. Methods: This qualitative study applied Indigenous methodologies undertaken with Aboriginal and Torres Strait Islander governance and leadership. A respected local Aboriginal person engaged with Aboriginal and Torres Strait Islander community members and service providers through semi-structured interviews and yarning circles that explored community needs and challenges, service gaps, access barriers, success stories, proposed strategies to address service and system challenges, and principles and values for service design. A content analysis identified the breadth of challenges in addition to describing key targets to empower and connect communities and optimize health and social services to strengthen individual and collective social and emotional wellbeing. Results: Eighty-three participants contributed to interviews and yarning circles including 17 Aboriginal community members, 38 Aboriginal and Torres Strait Islander service providers, and 28 non-Indigenous service providers. They expressed the need for codesigned, strengths-based, accessible and flexible services delivered by Aboriginal and Torres Strait Islander workers with lived experience employed in organisations with Aboriginal and Torres Strait Islander leadership and governance. Community hubs and cultural events in addition to one-stop-shop service centres and pre-crisis mental health, drug and alcohol and homelessness services were among many strategies identified. Conclusion: Holistic approaches to the promotion of social and emotional wellbeing are critical. Aboriginal and Torres Strait Islander people are calling for places in the community to connect and practice culture. They seek culturally safe systems that enable equitable access to and navigation of health and social services. Aboriginal and Torres Strait Islander workforce leading engagement with clients is seen to safeguard against judgement and discrimination, rebuild community trust in the service system and promote streamlined access to crucial services.

Racism, early psychosis, and institutional contact: A qualitative study of Indigenous experiences.

BACKGROUND: There is evidence of Indigenous and ethnic minority inequities in the incidence and outcomes of early psychosis. Racism has been implicated as having an important role. AIM: To use Indigenous experiences to develop a more detailed understanding of how racism operates to impact early psychosis outcomes. METHODS: Critical Race Theory informed the methodology used. Twenty-three Indigenous participants participated in four family focus group interviews and thirteen individual interviews, comprising of 9 Maori youth with early psychosis, 10 family members and 4 Maori mental health professionals. An analysis of the data was undertaken using deductive structural coding to identify descriptions of racism, followed by inductive descriptive and pattern coding. RESULTS: Participant experiences revealed how racism operates as a socio-cultural phenomenon that interacts with institutional policy and culture across systems pertaining to social responsiveness, risk discourse, and mental health service structures. This is described across three major themes: 1) selective responses based on racial stereotypes, 2) race related risk assessment bias and 3) institutional racism in the mental health workforce. The impacts of racism were reported as inaction in the face of social need, increased use of coercive practices and an under resourced Indigenous mental health workforce. CONCLUSION: The study illustrated the inter-related nature of interpersonal, institutional and structural racism with examples of interpersonal racism in the form of negative stereotypes interacting with organizational, socio-cultural and political priorities. These findings indicate that organizational cultures may differentially impact Indigenous and minority people and that social responsiveness, risk discourse and the distribution of workforce expenditure are important targets for anti-racism efforts.

The picture talk project: Aboriginal community input on consent for research.

BACKGROUND: The consent and community engagement process for research with Indigenous communities is rarely evaluated. Research protocols are not always collaborative, inclusive or culturally respectful. If participants do not trust or understand the research, selection bias may occur in recruitment, affecting study results potentially denying participants the opportunity to provide more knowledge and greater understanding about their community. Poorly informed consent can also harm the individual participant and the community as a whole. METHODS: Invited by local Aboriginal community leaders of the Fitzroy Valley, the Kimberley, Western Australia, The Picture Talk project explores the consent process for research. Focus groups of Aboriginal community members were conducted to establish preferences for methods of seeking individual consent. Transcripts were analysed through NVivo10 Qualitative software using grounded theory with inductive and deductive coding. Themes were synthesised with quotes highlighted. RESULTS: Focus groups with Aboriginal community members (n = 6 focus groups of 3-7 participants) were facilitated by a Community Navigator as a cultural guide and interpreter and a researcher. Participants were recruited from all main language groups of the Fitzroy Valley - Gooniyandi, Walmajarri, Wangkatjungka, Bunuba and Nikinya. Participants were aged ≥18 years, with 5 female groups and one male group. Themes identified include: Reputation and trust is essential; The Community Navigator is key; Pictures give the words meaning - milli milli versus Pictures; Achieving consensus in circles; Signing for consent; and Research is needed in the Valley. CONCLUSION: Aboriginal communities of the Fitzroy Valley recommend that researchers collaborate with local leaders, develop trust and foster a good reputation in the community prior to research. Local Aboriginal researchers should be employed to provide cultural guidance throughout the research process and interpret local languages especially for elders. Pictures are preferred to written text to explain research information and most prefer to sign for consent. The Fitzroy Valley welcomes research when collaborative and for the benefit of the community. Future research could include exploring how to support young people, promote health screening and improve understanding of medical knowledge.

Understanding barriers to health care access through cultural safety and ethical space: Indigenous people's experiences in Prince George, Canada.

Almost 1.7 million people in the settler colonial nation of Canada identify as Indigenous. Approximately 52 per cent of Indigenous peoples in Canada live in urban areas. In spite of high rates of urbanization, urban Indigenous peoples are overlooked in health care policy and services. Because of this, although health care services are more plentiful in cities as compared to rural areas, Indigenous people still report significant barriers to health care access in urban settings. This qualitative study, undertaken in Prince George, Canada, examines perceived barriers to health care access for urban Indigenous people in light of how colonialism impacts Indigenous peoples in their everyday lives. The three most frequently reported barriers to health care access on the part of the 65 participating health care providers and Indigenous clients of health care services are: substandard quality of care; long wait times; and experiences of racism and discrimination. These barriers, some of which are common complaints among the general population in Canada, are interpreted by Indigenous clients in unique ways rooted in experiences of discrimination and exclusion that stem from the settler colonial context of the nation. Through the lenses of cultural safety and ethical space - frameworks developed by international Indigenous scholars in efforts to better understand and operationalize relationships between Indigenous and non-Indigenous individuals and societies in the context of settler colonialism - this study offers an understanding of these barriers in light of the specific ways that colonialism intrudes into Indigenous clients' access to care on an everyday basis.

A framework for enhancing ethical genomic research with Indigenous communities.

Integration of genomic technology into healthcare settings establishes new capabilities to predict disease susceptibility and optimize treatment regimes. Yet, Indigenous peoples remain starkly underrepresented in genetic and clinical health research and are unlikely to benefit from such efforts. To foster collaboration with Indigenous communities, we propose six principles for ethical engagement in genomic research: understand existing regulations, foster collaboration, build cultural competency, improve research transparency, support capacity building, and disseminate research findings. Inclusion of underrepresented communities in genomic research has the potential to expand our understanding of genomic influences on health and improve clinical approaches for all populations.

The conduct of Australian Indigenous primary health care research focusing on social and emotional wellbeing: a systematic review.

Objectives and importance of study: Values and ethics: guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research (Values and ethics) describes key values that should underpin Aboriginal and Torres Strait Islander (Indigenous)-focused health research. It is unclear how research teams address this document in primary health care research. We systematically review the primary health care literature focusing on Indigenous social and emotional wellbeing (SEWB) to identify how Values and ethics and community preferences for standards of behaviour (local protocols) are addressed during research. STUDY TYPE: Systematic review in accordance with PRISMA Guidelines and MOOSE Guidelines for Meta-Analyses and Systematic Reviews of Observational Studies. METHODS: We searched four databases and one Indigenous-specific website for qualitative, quantitative and mixed-method studies published since Values and ethics was implemented (2003). Included studies were conducted in primary health care services, focused on Indigenous SEWB and were conducted by research teams. Using standard data extraction forms, we identified actions taken (reported by authors or identified by us) relating to Values and ethics and local protocols. RESULTS: A total of 25 studies were included. Authors of two studies explicitly mentioned the Values and ethics document, but neither reported how their actions related to the document's values. In more than half the studies, we identified at least three actions relating to the values. Some actions related to multiple values, including use of culturally sensitive research processes and involving Indigenous representatives in the research team. Local protocols were rarely reported. CONCLUSION: Addressing Values and ethics appears to improve research projects. The academic community should focus on culturally sensitive research processes, relationship building and developing the Indigenous research workforce, to facilitate acceptable research that affects health outcomes. For Values and ethics to achieve its full impact and to improve learning between research teams, authors should be encouraged to report how the principles are addressed during research, including barriers and enablers that are encountered.

[Ethical considerations for health research regarding Colombian indigenous peoples]. / Consideraciones éticas para la investigación en salud con pueblos indígenas de Colombia.

Health research can produce valuable insights to guide interventions offered to individuals and human groups. However, it requires specific precautions to protect potentially vulnerable subjects, such as indigenous populations. It has been recognized that there has been unethical conduct in research -from the international authorities responsible for outlining ethical standards for research projects- with regards to indigenous peoples. This article presents and discusses national and international guidelines to regulate research involving indigenous peoples. In summary, respect for the autonomy and for the own knowledge are rights that must be met to carry out scientific research with indigenous peoples. In addition to the informed consent, the process of consultation and agreement allows adequate contextualization in relation to the problems, needs, and benefits of research in these populations.

La investigación en salud puede producir conocimientos valiosos para orientar las intervenciones de este tipo ofrecidas a individuos y grupos humanos. No obstante, requiere de especificidades para preservar del daño a sujetos de especial protección ante la ley, tales como las poblaciones pertenecientes a etnias indígenas. Por parte de las autoridades internacionales encargadas de trazar normas éticas para proyectos de investigación, se han reconocido conductas científicas poco éticas en investigaciones que involucran a pueblos indígenas. Por esta razón, se han proclamado principios sobre bioética de aplicación internacional para estos grupos poblacionales. Este artículo presenta, analiza y discute posicionamientos del orden nacional e internacional al respecto. En suma, el respeto por la autonomía y la defensa del conocimiento propio son derechos que deben cumplirse y ser tenidos en cuenta al momento de realizar investigaciones científicas con pueblos indígenas. Además del consentimiento informado individual y comunitario, el uso del proceso de consulta previa y concertación permite obtener una adecuada contextualización respecto a las perspectivas, marcos y conceptos a partir de los cuales se realizará la investigación; así como las problemáticas, necesidades y beneficios de la investigación en estos grupos poblacionales.

Getting it Right: study protocol to determine the diagnostic accuracy of a culturally-specific measure to screen for depression in Aboriginal and/or Torres Strait Islander people.

INTRODUCTION: A freely available, culturally valid depression screening tool is required for use by primary care services across Australia to screen for depression in Aboriginal and/or Torres Strait Islander populations. This is the protocol for a study aiming to determine the validity, sensitivity and specificity of the culturally adapted 9-item Patient Health Questionnaire (aPHQ-9). METHODS AND ANALYSIS: Cross-sectional validation study. A total of 500 people who self-identify as Aboriginal and/or Torres Strait Islander, are ≥18 years of age, attending 1 of 10 primary healthcare services or service events across Australia and able to communicate sufficiently to answer study questions will be recruited. All participants will complete the aPHQ-9 and the criterion standard MINI International Neuropsychiatric Interview (MINI) 6.0.0. The primary outcome is the criterion validity of the aPHQ-9. Process outcomes related to acceptability and feasibility of the aPHQ-9 will be analysed only if the measure is found to be valid. ETHICS AND DISSEMINATION: Lead ethical approval was obtained jointly from the University of Sydney Human Research Ethics Committee (project 2014/361) and the Aboriginal Health and Medical Research Council of New South Wales (project 1044/14). Results will be disseminated via the usual scientific forums, including peer-reviewed publications and presentations at international conferences following presentation to, discussion with and approval by participating primary healthcare service staff and community. TRIAL REGISTRATION NUMBER: ACTRN12614000705684.

Institutional Delivery and Satisfaction among Indigenous and Poor Women in Guatemala, Mexico, and Panama.

Indigenous women in Mesoamerica experience disproportionately high maternal mortality rates and are less likely to have institutional deliveries. Identifying correlates of institutional delivery, and satisfaction with institutional deliveries, may help improve facility utilization and health outcomes in this population. We used baseline surveys from the Salud Mesoamérica Initiative to analyze data from 10,895 indigenous and non-indigenous women in Guatemala and Mexico (Chiapas State) and indigenous women in Panama. We created multivariable Poisson regression models for indigenous (Guatemala, Mexico, Panama) and non-indigenous (Guatemala, Mexico) women to identify correlates of institutional delivery and satisfaction. Compared to their non-indigenous peers, indigenous women were substantially less likely to have an institutional delivery (15.2% vs. 41.5% in Guatemala (P<0.001), 29.1% vs. 73.9% in Mexico (P<0.001), and 70.3% among indigenous Panamanian women). Indigenous women who had at least one antenatal care visit were more than 90% more likely to have an institutional delivery (adjusted risk ratio (aRR) = 1.94, 95% confidence interval (CI): 1.44-2.61), compared to those who had no visits. Indigenous women who were advised to give birth in a health facility (aRR = 1.46, 95% CI: 1.18-1.81), primiparous (aRR = 1.44, 95% CI: 1.24-1.68), informed that she should have a Caesarean section (aRR = 1.41, 95% CI: 1.21-1.63), and had a secondary or higher level of education (aRR = 1.36, 95% CI: 1.04-1.79) also had substantially higher likelihoods of institutional delivery. Satisfaction among indigenous women was associated with being able to be accompanied by a community health worker (aRR = 1.15, 95% CI: 1.05-1.26) and facility staff speaking an indigenous language (aRR = 1.10, 95% CI: 1.02-1.19). Additional effort should be exerted to increase utilization of birthing facilities by indigenous and poor women in the region. Improving access to antenatal care and opportunities for higher-level education may increase institutional delivery rates, and providing culturally adapted services may improve satisfaction.

'We don't tell people what to do': ethical practice and Indigenous health promotion.

Health promotion aspires to work in empowering, participatory ways, with the goal of supporting people to increase control over their health. However, buried in this goal is an ethical tension: while increasing people's autonomy, health promotion also imposes a particular, health promotion-sanctioned version of what is good. This tension positions practitioners precariously, where the ethos of empowerment risks increasing health promotion's paternalistic control over people, rather than people's control over their own health. Herein we argue that this ethical tension is amplified in Indigenous Australia, where colonial processes of control over Indigenous lands, lives and cultures are indistinguishable from contemporary health promotion 'interventions'. Moreover, the potential stigmatisation produced in any paternalistic acts 'done for their own good' cannot be assumed to have evaporated within the self-proclaimed 'empowering' narratives of health promotion. This issue's guest editor's call for health promotion to engage 'with politics and with philosophical ideas about the state and the citizen' is particularly relevant in an Indigenous Australian context. Indigenous Australians continue to experience health promotion as a moral project of control through intervention, which contradicts health promotion's central goal of empowerment. Therefore, Indigenous health promotion is an invaluable site for discussion and analysis of health promotion's broader ethical tensions. Given the persistent and alarming Indigenous health inequalities, this paper calls for systematic ethical reflection in order to redress health promotion's general failure to reduce health inequalities experienced by Indigenous Australians.

When a patient's ethnicity is declared, medical students' decision-making processes are affected.

BACKGROUND: Disparity in health status and healthcare outcomes is widespread and well known. This holds true for Indigenous peoples in many settings including Australia and Hawaii. While multi-factorial, there is increasing evidence of health practitioner contribution to this disparity. This research explored senior medical students' clinical decision-making processes. METHODS: A qualitative study was conducted in 2014 with 30 final year medical students from The University of Melbourne, Australia, and The John Burns Medical School, Hawaii, USA. Each student responded to questions about a paper-based case, first in writing and elaborated further in an interview. Half the students were given a case of a patient whose ethnicity was not declared; the other half considered the patient who was Native Hawaiian or Australian Aboriginal. A systematic thematic analysis of the interview transcripts was conducted. RESULTS: The study detected subtle biases in students' ways of talking about the Indigenous person and their anticipation of interacting with her as a patient. Four main themes emerged from the interview transcripts: the patient as a person; constructions of the person as patient; patient-student/doctor interactions; and the value of various education settings. There was a strong commitment to the patient's agenda and to the element of trust in the doctor-patient interaction. CONCLUSION: These findings will help to advance medical curricula so that institutions graduate physicians who are increasingly able to contribute to equitable outcomes for all patients in their care. The study also draws attention to subtle biases based on ethnicity that may be currently at play in physicians' practices.

Reducing the health disparities of Indigenous Australians: time to change focus.

BACKGROUND: Indigenous peoples have worse health than non-Indigenous, are over-represented amongst the poor and disadvantaged, have lower life expectancies, and success in improving disparities is limited. To address this, research usually focuses on disadvantaged and marginalised groups, offering only partial understanding of influences underpinning slow progress. Critical analysis is also required of those with the power to perpetuate or improve health inequities. In this paper, using Australia as a case example, we explore the effects of 'White', Anglo-Australian cultural dominance in health service delivery to Indigenous Australians. We address the issue using race as an organising principle, underpinned by relations of power. METHODS: Interviews with non-Indigenous medical practitioners in Western Australia with extensive experience in Indigenous health encouraged reflection and articulation of their insights into factors promoting or impeding quality health care to Indigenous Australians. Interviews were audio-taped and transcribed. An inductive, exploratory analysis identified key themes that were reviewed and interrogated in light of existing literature on health care to Indigenous people, race and disadvantage. The researchers' past experience, knowledge and understanding of health care and Indigenous health assisted with data interpretation. Informal discussions were also held with colleagues working professionally in Indigenous policy, practice and community settings. RESULTS: Racism emerged as a key issue, leading us to more deeply interrogate the role 'Whiteness' plays in Indigenous health care. While Whiteness can refer to skin colour, it also represents a racialized social structure where Indigenous knowledge, beliefs and values are subjugated to the dominant western biomedical model in policy and practice. Racism towards Indigenous patients in health services was institutional and interpersonal. Internalised racism was manifest when Indigenous patients incorporated racist attitudes and beliefs into their lived experience, lowering expectations and their sense of self-worth. CONCLUSIONS: Current health policies and practices favour standardised care where the voice of those who are marginalised is often absent. Examining the effectiveness of such models in reducing health disparities requires health providers to critically reflect on whether policies and practices promote or compromise Indigenous health and wellbeing--an important step in changing the discourse that places Indigenous people at the centre of the problem.

Ethical professional practice: exploring the issues for health services to rural Aboriginal communities.

CONTEXT: This article provides a first person account of the experience of professional ethics for a psychologist who has worked in several Aboriginal communities in Alberta, Canada. ISSUES: These small rural communities tend to have few services and health services are typically provided by multidisciplinary health teams. Team members are predominantly community members, creating an embedded service environment that highlights the need for integrity in relationships. As the psychologist travelling to these communities I require sensitivity to cultural considerations, multiple party responsibilities, and community pressure on service delivery. LESSONS LEARNED: In these settings, in consideration of the principle of respect for the dignity of persons, there is enhanced need for non-discrimination, particularly as most community members are vulnerable persons. Also, the context of small community clinics highlights issues of privacy and confidentiality. Responsible caring in these kinds of general practice also raise ongoing questions about competence and the need for daily risk-benefit analysis. Finally, responsibility to society is also an overarching consideration given the conditions of Canadian Aboriginal communities.

Rangatiratanga and Oritetanga: responses to the Treaty of Waitangi in a New Zealand study.

INTRODUCTION: Although opportunities exist for positive experiences in research, Maori in New Zealand, like other indigenous people colonised by Europeans in the nineteenth century, have also been subject to research and associated policies that have had long-lasting negative consequences. Researchers have subsequently been challenged by Maori to conduct research that is acceptable, accountable and relevant. Much of this debate has taken place within the framework of the Treaty of Waitangi, a treaty of cession signed between Maori and British Crown representatives in 1840. Nowadays, health and health research statutes exist that require researchers to respond to the 'principles' of the Treaty. Few practical examples of how health researchers have undertaken this have been published. AIMS: We examine how, in developing a national study of injury outcomes, we responded to the Treaty. Our study, the Prospective Outcomes of Injury Study, aims to quantitatively identify predictors of disability following injury and to qualitatively explore experiences and perceptions of injury outcomes. DISCUSSION: Responses to the Treaty included: consultation with Maori groups, translation of the questionnaire into te reo Maori, appointment of interviewers fluent in te reo Maori, sufficient numbers of Maori participants to allow Maori-specific analyses and the inclusion of a Maori-specific qualitative component. While this article is located within the New Zealand context, we believe it will resonate with, and be of relevance to, health researchers in other former settler societies. We do not contend this project represents an 'ideal' model for undertaking population-based research. Instead, we hope that by describing our efforts at responding to the Treaty, we can prompt wider debate of the complex realities of the research environment, one which is scientifically, ethically and culturally located.

The practice of confidentiality in an Aboriginal medical service--what do GPs need to know?

BACKGROUND: The medical ethic of confidentiality is usually taught from a western ethical perspective based on the Hippocratic oath. This study at an urban Aboriginal medical service aimed to explore how confidentiality is understood in a community controlled Aboriginal health service, with a view to informing the training of general practitioners. METHOD: Twenty-three people, comprising staff, patients and general practice registrars, were interviewed about confidentiality between July 2007 and February 2008. RESULTS: Six themes were identified: overlapping contexts of confidentiality, key sensitivities, sharing of patient information, importance of consent, multiple roles, and consequences of maintaining or breaching confidentiality. DISCUSSION: Perspectives on confidentiality in this community included issues of social justice, the importance of public demonstrations of confidentiality, and the challenge of protecting all relationships when staff have multiple roles. Incorporation of community perspectives into the teaching of confidentiality may help doctors to understand the responsibilities of practising confidentiality in certain communities.

Equity in health care and institutional trust: a communitarian view.

Communitarianism acknowledges and values, and not just instrumentally, the bonds that unite and identify communities. Communitarians also value community per se. This paper argues that trust is likely to be stronger in communities where these bonds are greater. Equity in health care is a social phenomenon. In health care, it is apparent that more communitarian societies, such as Scandinavia and within Aboriginal Australia, are likely to value more equity-orientated systems. Where, as in the latter case, this desire for equity takes place against a background of the powerful dominant (white) society treating the minority (black) society as dependent, Aboriginal trust in Australian society and in its public institutions is eroded. Lack of trust and inequity then come to the fore. This paper discusses institutional trust as a facilitator of equity in health care in the specific context of Indigenous health. The example used is Australian Aboriginal health but the principles would apply to other Indigenous populations as in for example South America.

Indigenous trauma: a New Zealand perspective.

The study of indigenous health is an emerging specialty and differs from other health disciplines in that the traditions and beliefs of indigenous people must be considered in developing health policy. New Zealand Maori and Australian Aboriginal and Torres Straight Islanders face similar health issues but have followed a different historical path. New Zealand was settled by the Maori from Eastern Polynesia in approximately 1300AD. A structured and settled society had developed by the time of British colonization in the 1800s. Because of Maori's obvious sovereignty over New Zealand the British negotiated a treaty in 1840 (The Treaty of Waitangi) with Maori that gave provision for their rights as British and later New Zealand citizens. Maori health indices suffered after the start of colonization but slowly rebounded in the 1900s linked to a resurgence in Maori culture, sporting and combat achievements. A sustained period of protest in the years following World War II has resulted in the inclusion of the provisions of the Treaty of Waitangi in legislation. Historical grievances of Maori relating to land confiscations and injustice are being addressed with formal apology and compensation. This process has allowed Maori to create their own infrastructure, to begin to develop their own health-care initiatives and to advise health-care authorities and governments on interventions to reduce health disparities between Maori and non-Maori New Zealanders.