'How Your Spirit Is Travelling'-Understanding First Nations Peoples' Experiences of Living Well with and after Cancer.

As the number of people living with cancer increases, it is important to understand how people can live well with and after cancer. First Nations people diagnosed with cancer in Australia experience survival disparities relating to health service accessibility and a lack of understanding of cultural needs and lived experiences. This study aimed to amplify the voices of First Nations individuals impacted by cancer and advance the development of a culturally informed care pathway. Indigenist research methodology guided the relational and transformative approach of this study. Participants included varied cancer experts, including First Nations people living well with and after cancer, health professionals, researchers, and policy makers. Data were collected through online Yarning circles and analysed according to an inductive thematic approach. The experience of First Nations people living well with and after cancer is inextricably connected with family. The overall themes encompass hope, family, and culture and the four priority areas included the following: strength-based understanding of cancer, cancer information, access to healthcare and support, and holistic cancer services. Respect for culture is interwoven throughout. Models of survivorship care need to integrate family-centred cancer care to holistically support First Nations people throughout and beyond their cancer journey.

Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study.

BACKGROUND: Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through cancer treatment and in the long term. Disengagement from education or work can have lasting implications for AYAs' financial independence, psychosocial well-being, and quality of life. Australian AYAs with cancer lack access to adequate specialist support for their education and work needs and report a preference for web-based support that they can access from anywhere, in their own time. However, it remains unclear what web-based resources exist that are tailored to support AYAs with cancer in reaching their educational or work goals. OBJECTIVE: This study aimed to determine what web-based resources exist for Australian AYAs with cancer to (1) support return to education or work and (2) identify the degree to which existing resources are age-specific, cancer-specific, culturally inclusive, and evidence-based; are co-designed with AYAs; use age-appropriate language; and are easy to find. METHODS: We conducted an environmental scan by searching Google with English search terms in August 2022 to identify information resources about employment and education for AYAs ever diagnosed with cancer. Data extraction was conducted in Microsoft Excel, and the following were assessed: understandability and actionability (using the Patient Education and Materials Tool), readability (using the Sydney Health Literacy Laboratory Health Literacy Editor), and whether the resource was easy to locate, evidence-based, co-designed with AYAs, and culturally inclusive of Aboriginal and Torres Strait Islander peoples. The latter was assessed using 7 criteria previously developed by members of the research team. RESULTS: We identified 24 web-based resources, comprising 22 written text resources and 12 video resources. Most resources (21/24, 88%) were published by nongovernmental organizations in Australia, Canada, the United States, and the United Kingdom. A total of 7 resources focused on education, 8 focused on work, and 9 focused on both education and work. The evaluation of resources demonstrated poor understandability and actionability. Resources were rarely evidence-based or co-designed by AYAs, difficult to locate on the internet, and largely not inclusive of Aboriginal and Torres Strait Islander populations. CONCLUSIONS: Although web-based resources for AYAs with cancer are often available through the websites of hospitals or nongovernmental organizations, this environmental scan suggests they would benefit from more evidence-based and actionable resources that are available in multiple formats (eg, text and audio-visual) and tailored to be age-appropriate and culturally inclusive.

Development of an Australian FASD Indigenous Framework: Aboriginal Healing-Informed and Strengths-Based Ways of Knowing, Being and Doing.

Aboriginal culture intuitively embodies and interconnects the threads of life that are known to be intrinsic to human wellbeing: connection. Therefore, Aboriginal wisdom and practices are inherently strengths-based and healing-informed. Underpinned by an Indigenist research methodology, this article presents findings from a collaboration of Aboriginal and non-Aboriginal peoples to develop an Australian Fetal Alcohol Spectrum Disorder (FASD) Indigenous Framework during 2021 to 2023. The FASD Indigenous Framework unfolds the changes that non-Aboriginal clinicians and Aboriginal peoples each need to make in their respective ways of knowing, being and doing in order to facilitate access to healing-informed, strengths-based and culturally responsive FASD knowledge, assessment, diagnosis and support services among Aboriginal peoples. Drawing on the Aboriginal practices of yarning and Dadirri, written and oral knowledges were gathered. These knowledges were mapped against Aboriginal cultural responsiveness and wellbeing frameworks and collaboratively and iteratively reflected upon throughout. This article brings together Aboriginal wisdom (strengths-based, healing-informed approaches grounded in holistic and integrated support) and Western wisdom (biomedicine and therapeutic models) in relation to FASD. From a place of still awareness (Dadirri), both forms of wisdom were drawn upon to create Australia's first FASD Indigenous Framework, a new practice in the assessment and diagnosis of FASD, which offers immense benefit to equity, justice, support and healing for Aboriginal families with a lived experience of FASD.

A Comprehensive Review of Optimal Approaches to Co-Design in Health with First Nations Australians.

BACKGROUND: Australia's social, structural, and political context, together with the continuing impact of colonisation, perpetuates health care and outcome disparities for First Nations Australians. A new approach led by First Nations Australians is required to address these disparities. Co-design is emerging as a valued method for First Nations Australian communities to drive change in health policy and practice to better meet their needs and priorities. However, it is critical that co-design processes and outcomes are culturally safe and effective. Aims: This project aimed to identify the current evidence around optimal approaches to co-design in health with First Nations Australians. METHODS: First Nations Australian co-led team conducted a comprehensive review to identify peer-reviewed and grey literature reporting the application of co-design in health-related areas by and with First Nations Australians. A First Nations Co-Design Working Group (FNCDWG) was established to guide this work and team.A Collaborative Yarning Methodology (CYM) was used to conduct a thematic analysis of the included literature. RESULTS: After full-text screening, 99 studies were included. Thematic analysis elicited the following six key themes, which included 28 practical sub-themes, relevant to co-design in health with First Nations Australians: First Nations Australians leadership; Culturally grounded approach; Respect; Benefit to First Nations communities; Inclusive partnerships; and Evidence-based decision making. CONCLUSION: The findings of this review provide a valuable snapshot of the existing evidence to be used as a starting point to guide appropriate and effective applications of co-design in health with First Nations Australians.

Aspects of Wellbeing for Indigenous Youth in CANZUS Countries: A Systematic Review.

Indigenous children and young people (hereafter youth) across CANZUS nations embody a rich diversity of cultures and traditions. Despite the immense challenges facing these youth, many harness cultural and personal strengths to protect and promote their wellbeing. To support this for all youth, it is critical to understand what contributes to their wellbeing. This review aims to identify components contributing to wellbeing for Indigenous youth in CANZUS nations. Five databases were searched from inception to August 2022. Papers were eligible if they: focused on Indigenous youth in CANZUS nations; included views of youth or proxies; and focused on at least one aspect of wellbeing. We identified 105 articles for inclusion (Canada n = 42, Australia n = 27, Aotearoa New Zealand n = 8, USA n = 28) and our analysis revealed a range of thematic areas within each nation that impact wellbeing for Indigenous youth. Findings highlight the unique challenges facing Indigenous youth, as well as their immense capacity to harness cultural and personal strengths to navigate into an uncertain future. The commonalities of Indigenous youth wellbeing across these nations provide valuable insights into how information and approaches can be shared across borders to the benefit of all Indigenous youth and future generations.

Self-reported wellbeing and health-related quality of life of Aboriginal and Torres Strait Islander people pre and post the first wave of the COVID-19 2020 pandemic.

OBJECTIVE: Quantify change in wellbeing and health-related quality-of-life (HRQoL) in Aboriginal and Torres Strait Islander adults pre and post Australia's initial COVID-19 lockdown. METHODS: Aboriginal and Torres Strait Islander adults completed an online survey at Time 1 (October-November 2019; before the initial Australian COVID-19 outbreak) and Time 2 (August-September 2020; after the first Australian lockdown). We assessed wellbeing using a visual analogue scale (VAS) and HRQoL using the Assessment of Quality of Life (AQoL-4D) instrument. Participants who completed both surveys (n=42) were included to quantify change in outcomes over time and by comorbidity and demographic factors. RESULTS: Mean reduction in wellbeing over time was 6.4 points (95%CI -14.2 to 1.4) and was associated with age (18-54yo), financial instability and mental health comorbidity. Mean reduction in HRQoL over time was 0.06 (95%CI -0.12 to 0.01) and was associated with financial instability, high physical comorbidity level and mental health comorbidity. CONCLUSIONS: Aboriginal and Torres Strait Islanders aged 18-54yo, who were financially unstable or had elevated comorbidity during COVID lockdowns experienced greater reductions in wellbeing and HRQoL. IMPLICATIONS FOR PUBLIC HEALTH: As the COVID-19 pandemic continues in Australia, both urgent and forward planning is needed, especially for the priority groups identified.

Development of Key Principles and Best Practices for Co-Design in Health with First Nations Australians.

BACKGROUND: While co-design offers potential for equitably engaging First Nations Australians in findings solutions to redressing prevailing disparities, appropriate applications of co-design must align with First Nations Australians' culture, values, and worldviews. To achieve this, robust, culturally grounded, and First Nations-determined principles and practices to guide co-design approaches are required. AIMS: This project aimed to develop a set of key principles and best practices for co-design in health with First Nations Australians. METHODS: A First Nations Australian co-led team conducted a series of Online Yarning Circles (OYC) and individual Yarns with key stakeholders to guide development of key principles and best practice approaches for co-design with First Nations Australians. The Yarns were informed by the findings of a recently conducted comprehensive review, and a Collaborative Yarning Methodology was used to iteratively develop the principles and practices. RESULTS: A total of 25 stakeholders participated in the Yarns, with 72% identifying as First Nations Australian. Analysis led to a set of six key principles and twenty-seven associated best practices for co-design in health with First Nations Australians. The principles were: First Nations leadership; Culturally grounded approach; Respect; Benefit to community; Inclusive partnerships; and Transparency and evaluation. CONCLUSIONS: Together, these principles and practices provide a valuable starting point for the future development of guidelines, toolkits, reporting standards, and evaluation criteria to guide applications of co-design with First Nations Australians.

The Fabric of Aboriginal and Torres Strait Islander Wellbeing: A Conceptual Model.

Wellbeing is culturally bound and is shaped by many aspects of life, including experiences, beliefs and values. As such, in order to accurately measure wellbeing for a specific cultural group, it is necessary to understand the experiences, beliefs and values that influence the conception and experience of wellbeing of that group. This paper presents a conceptual model of wellbeing for Aboriginal and Torres Strait Islander people, which was developed from a large national qualitative study that explored the views of 359 Aboriginal and Torres Strait Islander adults. An Aboriginal- and Torres Strait Islander-led research team used an Indigenist research approach to iteratively develop this conceptual model, called the Fabric of Aboriginal and Torres Strait Islander Wellbeing model, which takes inspiration from Aboriginal and Torres Strait Islander weaving traditions whereby individual strands are twined to create fabrics that are both beautiful and strong. This reflects our findings that the parts of life that are most important to wellbeing for many Aboriginal and Torres Strait Islander people are interwoven with their families, communities and culture.

Using web conferencing to engage Aboriginal and Torres Strait Islander young people in research: a feasibility study.

BACKGROUND: While web conferencing technologies are being widely used in communication and collaboration, their uptake in conducting research field work has been relatively slow. The benefits that these technologies offer researchers for engaging with hard-to-reach populations are beginning to be recognised, however, the acceptability and feasibility of using web conferencing technology to engage Aboriginal and Torres Strait Islander young people in research is unknown. OBJECTIVE: This study aims to evaluate whether the use of web conferencing to engage Aboriginal and Torres Strait Islander young people in research is an acceptable and feasible alternative to conventional face-to-face methods. METHODS: Aboriginal and Torres Strait Islander young people aged between 18 and 24 years were recruited via emails, flyers and snowballing to participate in an Online Yarning Circle (OYC) about wellbeing conducted via web conferencing. Five young Aboriginal and Torres Strait Islander Australians were trained as peer facilitators and each conducted one or more OYCs with support from an experienced Aboriginal and Torres Strait Islander researcher. The OYCs were recorded and the researchers conducted post-OYC interviews with the facilitators. OYC recordings, facilitator interviews and researchers' reflections about the method were analysed to assess acceptability and feasibility for use with this population. RESULTS: 11 OYCs were conducted with 21 participants. The evaluation focused on (a) acceptability of the method for participants and facilitators and (b) feasibility of data collection method and procedures for use in research. Our evaluation revealed good acceptability and feasibility of the method, with only minor challenges experienced, which were predominantly logistical in nature and related to scheduling, obtaining documentation of consent, and technical issues. These challenges were offset by the greater control over the level of engagement that was comfortable for individual participants and the greater ease with which they felt they could withdraw from participating. This shift in the traditional researcher-participant power dynamic was recognised by both participants and peer facilitators and was regarded as a support for Aboriginal and Torres Strait Islander young people's participation in research. CONCLUSIONS: The use of web conferencing to engage Aboriginal and Torres Strait Islander young people in research offers an acceptable and feasible alternative to face-to-face research methods. The benefits conferred by these technologies associated with yielding greater control and power to the research participant has broad relevance to research with marginalised populations.

What Matters 2 Adults (WM2Adults): Understanding the Foundations of Aboriginal and Torres Strait Islander Wellbeing.

Aboriginal and Torres Strait Islander people experience a greater range of health and social disadvantages compared to other Australians. Wellbeing is a culturally-bound construct, and to date, a national evidence base around the components of wellbeing for Aboriginal and Torres Strait Islander people is lacking. Understanding and measurement of wellbeing for this population is critical in achieving health equity. This paper aims to identify and describe the foundations of wellbeing for Aboriginal and Torres Strait Islander adults. This national qualitative study was underpinned by an Indigenist research approach which privileges the voices of Aboriginal and Torres Strait Islander people. Aboriginal and Torres Strait Islander adults were purposively recruited from around Australia between September 2017 and September 2018 to participate in Yarning Circles, led by Aboriginal and Torres Strait Islander researchers. Yarning Circles were audio recorded, transcribed and analyzed. A Collaborative Yarning Methodology was used, which incorporated reflexive thematic analysis to identify and describe the foundations of wellbeing reported by participants. A total of 359 Aboriginal and Torres Strait Islander adults participated. Our analysis revealed five foundations of wellbeing: belonging and connection; holistic health; purpose and control; dignity and respect; and basic needs. These foundations were deeply interwoven by three interconnected aspects of Aboriginal and Torres Strait Islander life: family, community and culture. The findings of this study will substantially aid our efforts to develop a new wellbeing measure for Aboriginal and Torres Strait Islander adults. The iterative Indigenist methods used in this study provide a robust research methodology for conducting large-scale, nationally-relevant qualitative research with Aboriginal and Torres Strait Islander people. Policies and practices that are informed by our results have the potential to address outcomes that are meaningful for Aboriginal and Torres Strait Islander people.

Wellbeing of Indigenous Peoples in Canada, Aotearoa (New Zealand) and the United States: A Systematic Review.

Despite the health improvements afforded to non-Indigenous peoples in Canada, Aotearoa (New Zealand) and the United States, the Indigenous peoples in these countries continue to endure disproportionately high rates of mortality and morbidity. Indigenous peoples' concepts and understanding of health and wellbeing are holistic; however, due to their diverse social, political, cultural, environmental and economic contexts within and across countries, wellbeing is not experienced uniformly across all Indigenous populations. We aim to identify aspects of wellbeing important to the Indigenous people in Canada, Aotearoa and the United States. We searched CINAHL, Embase, PsycINFO and PubMed databases for papers that included key Indigenous and wellbeing search terms from database inception to April 2020. Papers that included a focus on Indigenous adults residing in Canada, Aotearoa and the United States, and that included empirical qualitative data that described at least one aspect of wellbeing were eligible. Data were analysed using the stages of thematic development recommended by Thomas and Harden for thematic synthesis of qualitative research. Our search resulted in 2669 papers being screened for eligibility. Following full-text screening, 100 papers were deemed eligible for inclusion (Aotearoa (New Zealand) n = 16, Canada n = 43, United States n = 41). Themes varied across countries; however, identity, connection, balance and self-determination were common aspects of wellbeing. Having this broader understanding of wellbeing across these cultures can inform decisions made about public health actions and resources.

Traditional, complementary and integrative medicine use among Indigenous peoples with diabetes in Australia, Canada, New Zealand and the United States.

OBJECTIVE: This systematic review aimed to describe traditional, complementary and integrative medicine (TCIM) use among Indigenous peoples with diabetes from Australia, Canada, New Zealand and the United States (US). METHODS: A systematic search following the PRISMA (Preferred Reporting Items for Systematic Reviews and MetaAnalyses) statement guidelines was conducted. Data were analysed using meta-aggregation. RESULTS: Thirteen journal articles from 12 studies across Australia, Canada and the US were included in the review (no articles from New Zealand were identified). Indigenous peoples used various types of TCIM alongside conventional treatment for diabetes, particularly when conventional treatment did not meet Indigenous peoples' holistic understandings of wellness. TCIM provided opportunities to practice important cultural and spiritual activities. While TCIM was often viewed as an effective treatment through bringing balance to the body, definitions of treatments that comprise safe and effective TCIM use were lacking in the articles. CONCLUSIONS: The concurrent use of TCIM and conventional treatments is common among Indigenous peoples with diabetes, but clear definitions of safe and effective TCIM use are lacking. Implications for public health: Healthcare providers should support Indigenous peoples to safely and effectively treat diabetes with TCIM alongside conventional treatment.

Traditional and Complementary Medicine Use Among Indigenous Cancer Patients in Australia, Canada, New Zealand, and the United States: A Systematic Review.

BACKGROUND: Cancer 'patients' are increasingly using traditional indigenous and complementary medicines (T&CM) alongside conventional medical treatments to both cure and cope with their cancer diagnoses. To date T&CM use among Indigenous cancer patients from Australia, Canada, New Zealand, and the United States has not been systematically reviewed. METHODS: We systematically searched bibliographic databases to identify original research published between January 2000 and October 2017 regarding T&CM use by Indigenous cancer patients in Australia, Canada, New Zealand, and the United States. Data from records meeting eligibility criteria were extracted and appraised for quality by 2 independent reviewers. RESULTS: Twenty-one journal articles from 18 studies across all 4 countries met our inclusion criteria. T&CM use ranged from 19% to 57.7% (differing across countries). T&CM was mostly used concurrently with conventional cancer treatments to meet their spiritual, emotional, social, and cultural needs; however, bush, traditional, and herbal medicines were used in a minority of cases as an alternative. CONCLUSIONS: Our findings highlight the importance of T&CM use to Indigenous cancer patients across these 4 countries; we identified multiple perceived spiritual, emotional and cultural benefits to its use. The patient's perception of their health professional's attitudes toward T&CM in some cases hindered or encouraged the patient's disclosure. Additional research is required to further explore the use and disclosure of T&CM among Indigenous cancer patients to help inform and ensure effective, safe, coordinated care for Indigenous cancer patients that relies on shared open decision making and communication across patients, communities, and providers.