Kulay Kalingka, a national cohort study of Aboriginal and Torres Strait Islander peoples' cancer experiences: a study protocol.

Aboriginal and Torres Strait Islander peoples are the First Peoples of Australia. Since settler colonisation, Aboriginal and Torres Strait Islander peoples have experienced disparities in health outcomes, including cancer, when compared with non-Indigenous Australians, including higher cancer incidence and mortality rates, and lower participation in cancer screening programmes. Data to monitor and improve outcomes are limited. The Kulay Kalingka Study will be a national cohort study aiming to understand Aboriginal and Torres Strait Islander people's beliefs about cancer and experiences with cancer care and treatment, and to improve experiences and outcomes. It will be nested within the Mayi Kuwayu Study, a national community-controlled cohort study of Aboriginal and Torres Strait Islander people (n>11 000), with supplementary in-community recruitment.Mayi Kuwayu Study participants aged ≥18 years who consented to being recontacted, and a diversity of local community members will be invited to participate through completing a questionnaire relevant to their cancer status, aiming to recruit 2800 participants without prior doctor-diagnosed cancer and 700 with a cancer diagnosis.This community-driven data will enable monitoring and reporting of national trends over time and will guide national cancer control research, policy and clinical care, to improve outcomes for Aboriginal and Torres Strait Islander peoples. The Kulay Kalingka Study has ethics approval from Australian Institute of Aboriginal and Torres Strait Islander Studies (#EO324-20220414 and REC-0121) and the Australian National University (#2022/465). The Kulay Kalingka Study is being developed with Aboriginal and Torres Strait Islander communities, following the Maiam nayri Wingara Indigenous Data Sovereignty Collective principles. Meaningful, accessible and culturally adapted study findings will be disseminated to Aboriginal and Torres Strait Islander communities through activities including community workshops, reports and feedback sheets, and in other ways as determined by the community. We will also return data to participating communities.

Wells S ，Brinckley MM ，Thurber KA ，Banks E ，Whop LJ ，Maddox R ，Lovett R ... -  《BMJ Open》

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

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. 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. 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.

Jones R ，Thurber KA ，Chapman J ，D'Este C ，Dunbar T ，Wenitong M ，Eades SJ ，Strelein L ，Davey M ，Du W ，Olsen A ，Smylie JK ，Banks E ，Lovett R ，Mayi Kuwayu Study Team ... -  《BMJ Open》

Knowledge translation in Aboriginal and Torres Strait Islander research contexts in Australia: scoping review protocol.

Knowledge translation (KT) involves bridging the gaps between research knowledge and research application or practice, by sharing this knowledge with knowledge-users. KT is increasingly being used in research with Indigenous peoples globally to address the top-down and inappropriate research approaches commonly used in Indigenous research. Employing KT in Indigenous research in Australia is an emergent field, despite Aboriginal and Torres Strait Islander peoples having conducted KT for generations.There is limited evidence which demonstrates how KT is applied in the Aboriginal/Torres Strait Islander context. Results will benefit researchers by demonstrating ways of appropriately translating research findings to knowledge-users, including Aboriginal and Torres Strait Islander communities, researchers and policy makers. The scoping review will also inform a KT definition, method and practices used in a large-scale, longitudinal cohort study of Aboriginal and Torres Strait Islander adults: the Mayi Kuwayu Study. Under guidance of an Aboriginal and Torres Strait Islander governance committee, we will conduct a scoping review on KT in Aboriginal/Torres Strait Islander research. We will follow the scoping review method outlined by the Joanna Briggs Institute. We will search the ANU SuperSearch, and grey and hard to find literature in June 2022. Abstracts and full-text articles will be screened by two independent reviewers. We will include studies that relate to KT in Aboriginal/Torres Strait Islander research, regardless of the research topic. Results will be used to inform the KT definition, method and practices that can be used in Aboriginal/Torres Strait Islander research contexts in Australia. The Mayi Kuwayu Study has ethics approvals from the Australian Institute of Aboriginal and Torres Strait Islander Studies, 12 Aboriginal/Torres Strait Islander organisations, and the Australian National University Human Research Ethics Committee. Results will be disseminated through peer-review publication and community workshops. Protocol registration is available online (10.17605/OSF.IO/JMFQ3).

Brinckley MM ，Bourke S ，Watkin Lui F ，Lovett R ... -  《BMJ Open》

Systematic review of Aboriginal and Torres Strait Islander peoples' experiences and supportive care needs associated with cancer.

Persistent disparities exist between Aboriginal and Torres Strait Islander peoples (the Indigenous peoples of Australia) and non-Indigenous Australians associated with cancer, with Aboriginal and Torres Strait Islander peoples experiencing a longer time to treatment, higher morbidity rates, and higher mortality rates. This systematic review aimed to investigate findings and recommendations in the literature about the experiences and supportive care needs of Aboriginal and Torres Strait Islander peoples with cancer in Australia. A qualitative systematic review was conducted using thematic analysis. Database searches were conducted in CINAHL, Informit, MEDLINE, ProQuest, Scopus, and Web of Science for articles published between January 2000 and December 2021. There were 91 included studies which were appraised using the Mixed Methods Appraisal Tool. The included studies reported on the experiences of cancer and supportive care needs in Aboriginal and Torres Strait Islander populations. Six key themes were determined: Culture, family, and community; cancer outcomes; psychological distress; access to health care; cancer education and awareness; and lack of appropriate data. Culture was seen as a potential facilitator to achieving optimal cancer care, with included studies highlighting the need for culturally safe cancer services and the routine collection of Aboriginal and Torres Strait Islander status in healthcare settings. Future work should capitalize on these findings by encouraging the integration of culture in healthcare settings to increase treatment completion and provide a positive experience for Aboriginal and Torres Strait Islander peoples with cancer.

Gilroy J ，Henningham M ，Meehan D ，Nila F ，McGlone J ，McAtamney A ，Whittaker K ，Brown B ，Varlow M ，Buchanan T ... -  《BMC PUBLIC HEALTH》

Developing Aboriginal and Torres Strait Islander cultural indicators: an overview from Mayi Kuwayu, the National Study of Aboriginal and Torres Strait Islander Wellbeing.

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. 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. 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. 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.

Bourke SC ，Chapman J ，Jones R ，Brinckley MM ，Thurber KA ，Calabria B ，Doery K ，Olsen A ，Lovett R ... -  《International Journal for Equity in Health》