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.

Bioética e interculturalidade na atenção à saúde indígena / Bioethics and interculturality in indigenous health care / Bioética e interculturalidad en la atención de salud indígena

Resumo Este artigo aponta aspectos socioculturais, teóricos e jurídicos para uma bioética intercultural na atenção à saúde dos povos indígenas do Brasil. A partir de uma perspectiva que busca construir práticas bioéticas adequadas aos encontros entre culturas, o texto argumenta que o foco em tecnologias leves de saúde pode ser um caminho para superar as dificuldades encontradas em um contexto permeado pela colonialidade e o racismo estrutural. Algumas experiências de prática bioética intercultural são apresentadas no artigo. Essas experiências, apesar de se referirem ao contexto brasileiro, podem ser aplicadas em outros cenários de encontro entre diferentes culturas.

Abstract This article points out sociocultural, theoretical and legal aspects for intercultural bioethics in health care for Indigenous peoples in Brazil. From a perspective that seeks to build bioethical practices suitable for encounters between cultures, the text argues that focusing on soft health technologies can help overcome the difficulties found in a context permeated by coloniality and structural racism. A few experiences of intercultural bioethical practice are presented in the article. Despite referring to the Brazilian context, such experiences can be applied in other scenarios where different cultures meet.

Resumen Este artículo señala aspectos socioculturales, teóricos y legales para una Bioética intercultural en la atención a la salud de los pueblos indígenas de Brasil. Desde una perspectiva que busca construir prácticas bioéticas adecuadas para el encuentro entre culturas, el texto sostiene que el enfoque en tecnologías blandas de salud puede ser una forma de superar las dificultades encontradas en un contexto permeado por la colonialidad y el racismo estructural. Algunas experiencias de práctica bioética presentados neste artículo, aunque sean del contexto indígena brasileño, pueden ser aplicadas a otros contextos de encuentros culturales.

Getting it Right: validating a culturally specific screening tool for depression (aPHQ-9) in Aboriginal and Torres Strait Islander Australians.

OBJECTIVES: To determine the validity, sensitivity, specificity and acceptability of the culturally adapted nine-item Patient Health Questionnaire (aPHQ-9) as a screening tool for depression in Aboriginal and Torres Strait Islander people. DESIGN: Prospective observational validation study, 25 March 2015 - 2 November 2016. SETTING, PARTICIPANTS: 500 adults (18 years or older) who identified as Aboriginal or Torres Strait Islander people and attended one of ten primary health care services or service events in urban, rural and remote Australia that predominantly serve Indigenous Australians, and were able to communicate sufficiently to respond to questionnaire and interview questions. MAIN OUTCOME MEASURES: Criterion validity of the aPHQ-9, with the depression module of the Mini-International Neuropsychiatric Interview (MINI) 6.0.0 as the criterion standard. RESULTS: 108 of 500 participants (22%; 95% CI, 18-25%) had a current episode of major depression according to the MINI criterion. The sensitivity of the aPHQ-9 algorithm for diagnosing a current major depressive episode was 54% (95% CI, 40-68%), its specificity was 91% (95% CI, 88-94%), with a positive predictive value of 64%. For screening for a current major depressive episode, the area under the receiver operator characteristic curve was 0.88 (95% CI, 0.85-0.92); with a cut-point of 10 points its sensitivity was 84% (95% CI, 74-91%) and its specificity 77% (95% CI, 71-83%). The aPHQ-9 was deemed acceptable by more than 80% of participants. CONCLUSIONS: Indigenous Australians found the aPHQ-9 acceptable as a screening tool for depression. Applying a cut-point of 10 points, the performance characteristics of the aPHQ were good.

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.

[Is disease merely illness?: Biomedicine, "parallel" forms of care and power]. / Las enfermedades ¿son solo padecimientos?: biomedicina, formas de atención "paralelas" y proyectos de poder.

Following Giovanni Berlinguer's proposal that health/disease processes are one of the primary spies into the contradictions of a system, this article describes cases that occurred in central and peripheral capitalist contexts as well as in the so-called "real socialist" States that allow such a role to be seen. Secondly, we observe the processes and above all the interpretations developed in Latin America and especially Mexico regarding the role attributed to traditional medicine in the identity and sense of belonging of indigenous peoples, which emphasize the incompatibility of indigenous worldviews with biomedicine. To do so we analyze projects that were carried out under the notion of intercultural health, which in large part resulted in failure both in health and political terms. The almost entirely ideological content and perspective of these projects is highlighted, as is the scant relationship they hold with the reality of indigenous people. Lastly, the impact and role that the advance of these conceptualizations and health programs might have had in the disengagement experienced over the last nearly ten years in the ethnic movements of Latin America is considered.

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.

Diagnosis and treatment for vulvar cancer for indigenous women from East Arnhem Land, Northern Territory: bioethical reflections.

This paper explores the bioethical issues associated with the diagnosis and treatment of vulvar cancer for Indigenous women in East Arnhem Land, Northern Territory, Australia. Based on a qualitative study of a vulvar cancer cluster of Indigenous women, the article highlights four main topics of bioethical concern drawn from the findings: informed consent, removal of body parts, pain management, and issues at the interface of Indigenous and Western health care. The article seeks to make a contribution towards Indigenous health and bioethics and bring to light areas of further research.