Roxanne Jones

Background: For Aboriginal and Torres Strait Islander peoples, culture is foundational to health and wellbeing. However, its inherent conceptual complexity and diversity across and within different Aboriginal and Torres Strait Islander cultural groups means that it has rarely been explored in depth by epidemiological research. As a result, there are very few measures which adequately represent the heterogeneity and importance of Aboriginal and Torres Strait Islander cultures for health and wellbeing. Tools grounded in the social determinants of health are mostly based on European academic opinion about what constitutes culture and wellbeing, and the views of Indigenous peoples are rarely included. Mayi Kuwayu, the National Study of Aboriginal and Torres Strait Islander Wellbeing, developed a new survey tool based on health and wellbeing as perceived by Aboriginal and Torres Strait Islander people. This paper describes several of the key processes used to identify cultural domains and develop questionnaire items for the survey tool, reflecting the importance of culture to Aboriginal and Torres Strait Islander peoples. Methods: Focus groups were conducted at community organisations and conferences with Aboriginal and Torres Strait Islander people. These sessions were aimed at identifying key cultural domains to be addressed by the Mayi Kuwayu questionnaire and to field test drafts of the questionnaire, which were then modified according to focus group feedback and expert input. Results: Extensive community consultations allowed us to identify key cultural domains, generate questionnaire items, and test initial content validity. The six overarching cultural domains identified during the development of the Mayi Kuwayu questionnaire were: Connection to Country; Beliefs and knowledge; Language; Family, kinship, and community; Cultural expression and continuity; and Self-determination and leadership. Conclusions: The processes used by Mayi Kuwayu have generated meaningful cultural items for use in Aboriginal and Torres Strait Islander health and wellbeing research. Further assessment of these processes, including a comparison with best practice guidelines and psychometric testing of the items and scales developed, will be conducted in a future program of work.

Discrimination is a fundamental determinant of health and health inequities. However, despite the high prevalence of discrimination exposure, there is limited evidence specific to Indigenous populations on the link between discrimination and health. This study employs a validated measure to quantify experiences of everyday discrimination in a national sample of Aboriginal and Torres Strait Islander (Australia’s Indigenous peoples) adults surveyed from 2018 to 2020 (≥16 years, n = 8108). It quantifies Prevalence Ratios (PRs) and 95% Confidence Intervals (CIs) for wellbeing outcomes by level of discrimination exposure, and tests if associations vary by attribution of discrimination to Indigeneity. Of the participants, 41.5% reported no discrimination, 47.5% low, and 11.0% moderate-high. Discrimination was more commonly reported by younger versus older participants, females versus males, and those living in remote versus urban or regional areas. Discrimination was significantly associated in a dose-response manner, with measures of social and emotional wellbeing, culture and identity, health behaviour, and health outcomes. The strength of the association varied across outcomes, from a 10–20% increased prevalence for some outcomes (e.g., disconnection from culture (PR = 1.08; 95% CI: 1.03, 1.14), and high blood pressure (1.20; 1.09, 1.32)), to a five-fold prevalence of alcohol dependence (4.96; 3.64, 6.76), for those with moderate-high versus no discrimination exposure. The association was of consistent strength and direction whether attributed to Indigeneity or not—with three exceptions. Discrimination is associated with a broad range of poor wellbeing outcomes in this large-scale, national, diverse cohort of Aboriginal and Torres Strait Islander adults. These findings support the vast potential to improve Aboriginal and Torres Strait Islander peoples’ wellbeing, and to reduce Indigenous-non-Indigenous inequities, by reducing exposure to discrimination.

The centrality of culture to Indigenous peoples’ health and wellbeing is becoming increasingly acknowledged in government policy. In Australia, the Indigenous Ranger program is a leading example of employment that supports increased cultural participation. In 2017, we demonstrated higher life satisfaction and family wellbeing among Indigenous Rangers compared to non-Rangers in Central Australia. Using an expanded national dataset, this present study aimed to: examine if associations between Ranger status and wellbeing continued to be observed in Central Australia; assess if these associations were observed among non-Central Australian Rangers; and, quantify the effect of mediating variables (Rangers status, cultural factors) on wellbeing outcomes. We analyzed Mayi Kuwayu baseline data (n = 9691 Aboriginal and Torres Strait Islander people) and compared participants who identified as past or currently employed Rangers compared to non-Rangers across two geographic locations (Central Australia, non-Central Australia). Ranger participation was significantly associated with very high life satisfaction and family wellbeing in Central Australia (high life satisfaction PR 1.31, 95% CI 1.09–1.57, and family wellbeing (PR 1.17, 95% CI 1.01–1.36) and non-Central Australia (high life satisfaction PR 1.29, 95% CI 1.06–1.57), family wellbeing (PR 1.37, 95% CI 1.14–1.65). These findings concord with those observed in the 2017 proof-of-concept study. Additionally, we found that Ranger status partially mediated the relationships between existing cultural practices (first language as your Indigenous language and living on your country) and the two wellbeing outcomes. Current cultural practices, spending time on country and speaking your Aboriginal language, also partially mediated the associations between Ranger status and high life satisfaction, and between Ranger status and high family wellbeing. This analysis supports evidence that both Ranger employment and cultural participation are contributors to wellbeing. Ranger work is not only good for land, but it is good for people. As such, determining policies that mutually acknowledge and enhance culture, health and wellbeing will likely have additional benefits for the broader Aboriginal and Torres Strait Islander population.

Background: It is well established that racism is a fundamental contributor to poor health and inequities. There is consistent evidence of high exposure to discrimination among Aboriginal and Torres Strait Islander (Indigenous Australian) peoples, but impacts have not been fully quantified, in part due to limited measurement tools. We aim to validate instruments developed to measure interpersonal discrimination. Methods: Instruments were discussed at five focus groups and with experts, and field tested in developing Mayi Kuwayu: The National Study of Aboriginal and Torres Strait Islander Wellbeing. Data from 7501 baseline survey participants were analysed. Acceptability was assessed according to extent of missingness, construct validity using exploratory and confirmatory factor analysis, and reliability using Cronbach’s alpha. Associations between each instrument and outcomes conceptually understood to be closely (community-level racism) or less closely (family wellbeing) related were quantified to test convergent and discriminant validity. Results: An 8-item instrument captures experiences of discrimination in everyday life and a 4-item instrument experiences in healthcare, each followed by a global attribution item. Item missingness was 2.2–3.7%. Half (55.4%) of participants reported experiencing any everyday discrimination, with 65.7% attributing the discrimination to Indigeneity; healthcare discrimination figures were 34.1% and 51.1%. Items were consistent with two distinct instruments, differentiating respondents with varying experiences of discrimination. Scales demonstrated very good reliability and convergent and divergent validity. Conclusion: These brief instruments demonstrate face validity and robust psychometric properties in measuring Aboriginal and Torres Strait Islander adults’ experiences of interpersonal discrimination in everyday life and in healthcare. They can be used to quantify population-level experiences of discrimination, and associated wellbeing consequences, and monitor change.

This chapter examines the intersection of Indigenous data sovereignty, Indigenous data governance and the Australian Commonwealth Government policy of “Closing the Gap”. We first explore the contemporary Indigenous affairs legislative and policy nexus including the Closing the Gap policy genesis and how political philosophies have been operationalized to drive the policy and data agenda. We conclude the chapter with an analysis of Closing the Gap policy against Indigenous data sovereignty principles including guidance on how Closing the Gap (and social policy more broadly) can benefit from operationalizing Indigenous data sovereignty principles and Indigenous data governance in Australia.

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. 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. 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. 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.

Culture can be viewed as an integral part of Aboriginal and Torres Strait Islander health and wellbeing. This study explores the association between caring for country, through participation in a Ranger program, and wellbeing. We analyzed cross-sectional data collected in Central Australia in 2017, comparing health and wellbeing (life satisfaction, general health, psychological wellbeing and family wellbeing) among Aboriginal and Torres Strait Islander peoples employed as Rangers (n = 43) versus not employed as Rangers (n = 160). We tested if any differences in outcomes were explained by differences in key demographic or health factors. Ranger participation was significantly associated with very high life satisfaction (PR = 1.69, 95% CI: 1.29, 2.20) and high family wellbeing (PR = 1.47, 95% CI: 1.13, 1.90); associations remained significant after individual adjustment for education, income, employment, health risk factors and health conditions. The magnitude and direction of associations were similar for very good general health, but results were not significant. We did not identify an association between Ranger participation and psychological wellbeing. While based on a small sample, these findings support the assertion that participation in the Ranger program is associated with positive health and wellbeing outcomes. This supports the continuation of cultural participation and practice through the Ranger program and has implications for funding, program and policy development.

Introduction Aboriginal and Torres Strait Islander peoples are Australia’s first peoples and have been connected to the land for ≥65 000 years. Their enduring cultures and values are considered critical to health and wellbeing, alongside physical, psychological and social factors. We currently lack large-scale data that adequately represent the experiences of Aboriginal and Torres Strait Islander people; the absence of evidence on cultural practice and expression is particularly striking, given its foundational importance to wellbeing. Method and analysis Mayi Kuwayu: The National Study of Aboriginal and Torres Strait Islander Wellbeing (Mayi Kuwayu Study) will be a large-scale, national longitudinal study of Aboriginal and Torres Strait Islander adults, with linkage to health-related administrative records. The baseline survey was developed through extensive community consultation, and includes items on: cultural practice and expression, sociodemographic factors, health and wellbeing, health behaviours, experiences and environments, and family support and connection. The baseline survey will be mailed to 200 000 Aboriginal and Torres Strait Islander adults (≥16 years), yielding an estimated 16 000–40 000 participants, supplemented through face-to-face recruitment. Follow-up surveys will be conducted every 3–5 years, or as funding allows. The Mayi Kuwayu Study will contribute to filling key evidence gaps, including quantifying the contribution of cultural factors to wellbeing, alongside standard elements of health and risk. Ethics and dissemination This study has received approval from national Human Research Ethics Committees, and from State and Territory committees, including relevant Aboriginal and Torres Strait Islander organisations. The study was developed and is conducted in partnership with Aboriginal and Torres Strait Islander organisations across states and territories. It will provide an enduring and shared infrastructure to underpin programme and policy development, based on measures and values important to Aboriginal and Torres Strait Islander peoples. Approved researchers can access confidentialised data and disseminate findings according to study data access and governance protocols.