Study protocol:Our Cultures Count, the Mayi Kuwayu Study, a national longitudinal study of Aboriginal and Torres Strait Islander wellbeing

Abstract

IntroductionAboriginal 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 analysisMayi 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 disseminationThis 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.

Associations between Participation in a Ranger Program and Health and Wellbeing Outcomes among Aboriginal and Torres Strait Islander People in Central Australia: A Proof of Concept Study

“…These focus groups were critical to developing and refining measures of culture and wellbeing that are appropriate and meaningful to participants across the country. Details of the Mayi Kuwayu Study are provided elsewhere [ 21 ].…”

“…As a ‘proof of concept’ project, the research team were able to test the survey questions for the Mayi Kuwayu Study, and refine them for subsequent use in the upcoming national study [ 21 ], and potentially additional future research studies. The engagement and collaboration with Aboriginal and Torres Strait Islander communities and organizations has enabled the contextualization of research findings, and the generation of evidence that is meaningful and of value to participating communities.…”

Do stress, life satisfaction, depression and alcohol use predict quitting among Aboriginal and Torres Strait Islander smokers?

“…Our survey was long and focussed on smoking‐related behaviours and attitudes, and like similar ITC surveys, we did not have space for a series of questions required for standard validated holistic measures of mental health and wellbeing. The recently commenced Mayi Kuwayu longitudinal study of the Aboriginal and Torres Strait Islander population will not only have a much larger sample size to enable such examination of long‐term quit success, but it is also assessing many more measures of mental health and wellbeing and stressors, so may be able to better understand the unexpected association between stress and quitting smoking in this population 48 …”

Respiratory, birth and health economic measures for use with Indigenous Australian infants in a research trial: A modified Delphi with an Indigenous panel

“…The 50-item questionnaire was ultimately shortened to 33 items based on feedback. A developmental screening measure, the Ages and Stages questionnaire (46) as well as the adapted version for remote Indigenous communities (39) were also presented to the panel. Interestingly all panel members indicated inclusion of a measure on child development, when not typically measured in studies on respiratory health.…”