What Matters to Aboriginal and Torres Strait Islander Youth (WM2Y): a study protocol to develop a national youth well-being measure.

INTRODUCTION: Adolescents face challenges associated with unprecedented environmental, social and technological changes. The impacts of colonisation, intergenerational trauma, racism and socioeconomic disadvantage intensify these challenges for many Aboriginal and Torres Strait Islander adolescents. However, Aboriginal and Torres Strait Islander adolescents also have cultural, spiritual, family and community capital that fosters their well-being.To date, little research has focused on understanding and appropriately measuring the well-being of Aboriginal and Torres Strait Islander adolescents, a pivotal factor in informing and guiding programmes and interventions that support them. This study will identify the domains of well-being and develop a new preference-based well-being measure based on the values and preferences of Aboriginal and Torres Strait Islander youth (aged 12-17 years). METHODS AND ANALYSIS: This project will be conducted across three research phases: (1) qualitative exploration of well-being using PhotoYarning and yarns with adult mentors to develop candidate items; (2) Think Aloud study, quantitative survey, psychometric analysis, validity testing of candidate items and finalisation of the descriptive system; and (3) scoring development using a quantitative preference-based approach. A multinomial (conditional) logit framework will be used to analyse responses and generate a scoring algorithm for the new preference-based well-being measure. ETHICS AND DISSEMINATION: Ethics approvals have been obtained from: the Human Research Ethics Committees for each state and territory where data are being collected, the institutions where the research is being conducted and from the relevant Departments of Education. The new well-being measure will have wide applicability and can be used in assessing the effectiveness of programmes and services. This new national measure will ensure benefit and positive impact through the ability to identify and measure the aspects of well-being important to and valued by Aboriginal and Torres Strait Islander youth. Results will be published in international peer-reviewed journals and presented at conferences, and summaries will be provided to the study partner organisations and other relevant organisations.

Barriers and facilitators to adherence to Optimal Care Pathways for diagnosis and treatment of cancer for Aboriginal and Torres Strait Islander people.

BACKGROUND: The Optimal Care Pathways (OCP) are a framework to promote high-quality and integrated cancer care for all Australians, from prevention through to end-of-life-care. Aboriginal and Torres Strait Islander people experience disproportionate cancer incidence and mortality, but little research has addressed whether cancer care for Aboriginal people meets the standards prescribed by the OCPs. This study aims to consider barriers and facilitators to quality cancer care for Aboriginal people. METHODS: Semi-structured interviews were conducted with 30 health professionals who deliver care to Aboriginal people with cancer in primary care and hospital settings in New South Wales, Australia. Health professionals included Aboriginal Health Workers, nurses, general practitioners, and community workers. Interviews were conducted in 2019-2020 and explored participant perspectives of barriers and facilitators of optimal cancer care, particularly related to prevention, early detection, diagnosis, and treatment for Aboriginal people. Data were qualitatively analysed using framework analysis. RESULTS: In general, participants perceived Aboriginal patients to have good access to preventive care. In terms of early detection and diagnosis, access to primary care, pathology, radiology, and some specialists (e.g. respiratory physicians) was seen as optimal. However, access to hospital-based gastroenterologists for colonoscopy was perceived to be poor due to long wait times. Access to optimal care for cancer treatment was perceived to be hindered due to the lack of bulk-billing for bowel cancer, breast cancer, and cardiothoracic surgery. Other barriers to care identified by participants included unclear referral pathways, poor communication between patient and the treating team, and a lack of timely provision of discharge summaries. CONCLUSIONS: Facilitators of optimal care during treatment and survivorship included: the Integrated Team Care and Close the Gap programs, and presence of key health workers to help patients navigate the health system. The major barriers to quality cancer care for Aboriginal people appeared to be to specialist and procedural access, demonstrating that the 'Inverse Care' law applied in reducing access for populations at higher risk of cancer.

Patient Information Resources on Cardiovascular Health After Cancer Treatment: An Audit of Australian Resources.

PURPOSE: Up to one third of patients with cancer are thought to experience adverse cardiovascular events after their cancer diagnosis and treatment. High-quality information about cancer treatment-related cardiovascular disease can prepare patients and reduce anxiety. The aim of this project was to systematically identify Australian online information resources about cardiovascular health after cancer and assess the readability, understandability, actionability, and cultural relevance for Aboriginal and Torres Strait Islander patients. METHODS: We conducted systematic Google and website searches to identify potentially relevant resources. Eligibility was assessed using predefined criteria. For each eligible resource, we summarized the content and assessed readability, understandability, actionability, and cultural relevance for Aboriginal and Torres Strait Islander people. RESULTS: Seventeen online resources addressing cardiovascular health after cancer were identified: three focused solely on cardiovascular health and the remaining 14 dedicated between <1% and 48% of the word count to this topic. On average, three of 12 predefined content areas were covered by the resources. Only one resource was considered comprehensive, covering eight of 12 content areas. Overall, 18% of the resources were deemed readable for the average Australian adult, 41% deemed understandable, and only 24% had moderate actionability. None of the resources were considered culturally relevant for Aboriginal and Torres Strait Islander people, with 41% addressing only one of the seven possible criteria and the remainder addressing none of the criteria. CONCLUSION: This audit confirms a gap in online information resources about cardiovascular health after cancer. New resources, especially for Aboriginal and Torres Strait Islander people, are needed. The development of such resources must be done through involvement and collaboration with Aboriginal and Torres Strait Islander patients, families, and carers, through a codesign process.

Under-screened Aboriginal and Torres Strait Islander women's perspectives on cervical screening.

Aboriginal and Torres Strait Islander women have lower participation in Australia's National Cervical Screening Program than other Australian women. Under-screened (including never screened) women's voices are rarely heard in research evidence, despite being a priority group for interventions to increase cervical screening participation. This study aimed to describe under-screened Aboriginal and Torres Strait Islander women's perspectives on cervical screening. Participants were 29 under-screened (women who had either never screened, had not screened in the previous five years or had recently screened in the past three months after more than five years) Aboriginal and Torres Strait Islander women from five communities across three states/territories. Female Aboriginal and Torres Strait Islander researchers Yarned with women about why they did not participate in screening and how to improve screening. Yarning is an Indigenous qualitative research method in which relationships and trust facilitate culturally safe conversation. Transcripts were analysed thematically. The proportion of eligible women who screened within 30 days after the Yarn was calculated. We identified four themes describing how the harms outweighed the benefits of cervical screening for under-screened women. These were: 1) distress, discomfort, and trauma; 2) lack of privacy and control; 3) complicated relationships with health care providers (HCPs); and 4) pressured, insensitive, and/or culturally unsafe communication from HCPs. Under-screened women who had recently screened had maintained privacy and control through self-collection and had experienced trauma-informed and empathetic care from their HCPs. While we cannot unequivocally attribute women's subsequent participation in screening to their involvement in this study, it is notable that one third of eligible under-screened women were screened within 30 days after the Yarn. Enhancing privacy, implementing trauma-informed approaches to care and sensitivity to the clinician-client relationship dynamics could enhance women's sense of comfort in, and control over, the screening procedure. The opportunity to Yarn about cervical screening and self-collection may address these issues and support progress toward cervical cancer elimination in Australia.

Dialysis attendance patterns and health care utilisation of Aboriginal patients attending dialysis services in urban, rural and remote locations.

BACKGROUND: Aboriginal people in the Northern Territory (NT) suffer the heaviest burden of kidney failure in Australia with most living in remote areas at time of dialysis commencement. As there are few dialysis services in remote areas, many Aboriginal people are required to relocate often permanently, to access treatment. Missing dialysis treatments is not uncommon amongst Aboriginal patients but the relationship between location of dialysis service and dialysis attendance (and subsequent hospital use) has not been explored to date. AIM: To examine the relationships between location of dialysis service, dialysis attendance patterns and downstream health service use (overnight hospital admissions, emergency department presentations) among Aboriginal patients in the NT. METHODS: Using linked hospital and dialysis registry datasets we analysed health service activity for 896 Aboriginal maintenance dialysis patients in the NT between 2008 and 2014. Multivariate linear regression and negative binomial regression analyses explored the associations between dialysis location, dialysis attendance and health service use. RESULTS: We found missing two or more dialysis treatments per month was more likely for Aboriginal people attending urban services and this was associated with a two-fold increase in the rate of hospital admissions and more than three-fold increase in ED presentations. However, we found higher dialysis attendance and lower health service utilisation for those receiving care in rural and remote settings. When adjusted for age, time on dialysis, region, comorbidities and residence pre-treatment, among Aboriginal people from remote areas, those dialysing in remote areas had lower rates of hospitalisations (IRR 0.56; P < 0.001) when compared to those who relocated and dialysed in urban areas. CONCLUSION: There is a clear relationship between the provision and uptake of dialysis services in urban, rural and remote areas in the NT and subsequent broader health service utilisation. Our study suggests that the low dialysis attendance associated with relocation and care in urban models for Aboriginal people can potentially be ameliorated by access to rural and remote models and this warrants a rethinking of service delivery policy. If providers are to deliver effective and equitable services, the full range of intended and unintended consequences of a dialysis location should be incorporated into planning decisions.

Aboriginal and Torres Strait Islander women's views of cervical screening by self-collection: a qualitative study.

OBJECTIVE: This study aimed to describe Aboriginal and Torres Strait Islander women's views of self-collection introduced in the renewed National Cervical Screening Program. METHODS: A total of 79 Aboriginal and/or Torres Strait Islander women (50 screened in previous five years, 29 under-screened) from five clinics across three Australian states/territories participated. Topics discussed were perceptions of self-collection, the instruction card and suggestions for implementing self-collection. We employed yarning (a qualitative method), which established relationships and trust between participants and researchers to facilitate culturally safe conversations. Transcripts were analysed thematically. RESULTS: Most women were unaware of self-collection before the yarn but found it to be an acceptable way to participate in cervical screening. Women perceived self-collection would be convenient, provide a sense of control over the screening experience, and maintain privacy and comfort. The instructions were perceived to be simple and easy to follow. Women had concerns about collecting the sample correctly and the accuracy of the sample (compared to clinician-collected samples). CONCLUSIONS: Self-collection is acceptable to Aboriginal and Torres Strait Islander women. IMPLICATIONS FOR PUBLIC HEALTH: Given the inequitable burden of cervical cancer experienced by Aboriginal and Torres Strait Islander women, self-collection is likely to significantly improve participation and ultimately improve cervical cancer outcomes.

Communicating cancer and its treatment to Australian Aboriginal and Torres Strait Islander patients with cancer: a qualitative study.

PURPOSE: To investigate the successful strategies of health workers who support and regularly communicate with Aboriginal and Torres Strait Islander people about cancer and its treatment. METHODS: Semi-structured interviews were conducted face-to face or via telephone and audio-recorded with twenty-three health professionals (medical and radiation oncologists, oncology nurses and Aboriginal Health Workers), 5 identifying as Aboriginal or Torres Strait Islander in the Northern Territory and South Australia. When data saturation was reached, thematic analysis using a bottom up, essentialist/realist approach was used. RESULTS: Six themes emerged. (1) Create a safe environment, engender trust and build rapport. This involves considering the physical environment and allowing time in interviews to establish a relationship. (2) Employ specific communication strategies to explain cancer, treatment and its side effects through language choices and employing visual aids such as drawings, metaphors and relatable analogies. (3) Obtain support from Aboriginal and Torres Strait Islander staff and patient escorts who can assist in communication. (4) Consider culture which involves collective decision making, strong connection to country and community, with cultural obligations and a unique understanding of cancer. (5) Anticipate the contextual complexities of conflicts between Western medicine and Aboriginal culture, practitioner bias and difficulty maintaining contact with patients. (6) Develop personal qualities of good communicators, including being patient-centred, showing respect, patience, empathy and honesty. CONCLUSION: These insights will help foster more positive interactions with the health system and promote optimal outcomes for Aboriginal and Torres Strait Islander people with cancer.

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.

Study protocol: Yarning about HPV Vaccination: a qualitative study of factors influencing HPV vaccination among Aboriginal and Torres Strait Islander adolescents in Australia.

INTRODUCTION: Aboriginal and Torres Strait Islander women experience a higher burden of cervical cancer than non-Indigenous women in Australia. Cervical cancer is preventable partly through human papillomavirus (HPV) vaccination; in Australia, this is delivered through the national school-based immunisation programme. While HPV vaccination uptake is high among Australian adolescents, there remain gaps in uptake and completion among Aboriginal and Torres Strait Islander adolescents. This study aims to gain a comprehensive understanding of the barriers and facilitators to HPV vaccination uptake and completion among Aboriginal and Torres Strait Islander adolescents in Queensland, Australia. METHODS AND ANALYSIS: The study will be guided by an Indigenist research approach and an ecological model for health promotion. Yarning, a qualitative Indigenous research method, will be conducted in up to 10 schools. Participants will include Year 7 (12/13 years old) Aboriginal and Torres Strait Islander adolescents; parents/caregivers; and local key informants and immunisation programme partners involved in the delivery of school-based HPV immunisation programme. Participants will be recruited through school representatives and investigator networks using purposive and snowball sampling and samples of convenience. Field notes, HPV vaccination clinic observations and sequential diagramming of the HPV vaccination process will be conducted. Thematic analysis of data will be led by Aboriginal and Torres Strait Islander researchers. Synthesised sequential diagrams of the process of HPV vaccination and qualitative themes summarising key findings will be produced. ETHICS AND DISSEMINATION: The Aboriginal Health and Medical Research Council of New South Wales Ethics Committee (1646/20), the Australian National University Human Research Ethics Committee (HREC, 2020/478), the HREC of the Northern Territory Department of Health and Menzies School of Health Research (19-3484) and the Townsville Hospital and Health Service HREC (HREC/QTHS/73789) have approved the study. Dissemination will occur via conferences and peer-reviewed publications. Further dissemination will be determined in partnership with the Aboriginal and Torres Strait Islander Steering Committee, including Youth Representatives and Consultation Network.

"We Have to Be Strong Ourselves": Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer.

Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study. Twenty-two semi-structured qualitative interviews and one focus group were conducted with carers of Aboriginal and Torres Strait Islander adults with cancer (n = 12) and Aboriginal and Torres Strait Islander cancer survivors (n = 15) from Queensland, Australia. Half of the carers interviewed were Aboriginal or Torres Strait Islander Australians. Interviews were transcribed, coded and thematically analysed following an interpretive phenomenological approach. Thematic analysis of carer and survivor interviews revealed four key themes relating to carers' needs: managing multiple responsibilities; maintaining the carer's own health and wellbeing; accessing practical support and information; and engaging with the health system. Within these overarching themes, multiple needs were identified including specific needs relevant for carers of Aboriginal and Torres Strait Islander peoples, such as advocating for the patient; accessing Indigenous support services and health workers; and ensuring that the cultural needs of the person are recognised and respected. Identifying the needs of informal carers of Aboriginal and Torres Strait Islander cancer patients will enable greater understanding of the support that carers require and inform the development of strategies to meet these areas of need.

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.

Do remote dialysis services really cost more? An economic analysis of hospital and dialysis modality costs associated with dialysis services in urban, rural and remote settings.

BACKGROUND: Rates of end-stage kidney disease in Australia are highest in the Northern Territory (NT), with the burden of disease heaviest in remote areas. However, the high cost of delivering dialysis services in remote areas has resulted in centralisation, requiring many people to relocate for treatment. Patients argue that treatment closer to home improves health outcomes and reduces downstream healthcare use. Existing dialysis cost studies have not compared total health care costs associated with treatment in different locations. OBJECTIVE: To estimate and compare, from a payer perspective, the observed health service costs (all cause hospital admissions, emergency department presentations and maintenance dialysis) associated with different dialysis models in urban, rural and remote locations. METHODS: Using cost weights attributed to diagnostic codes in the NT Department of Health's hospital admission data set (2008-2014), we calculated the mean (SD) total annual health service costs by dialysis model for 995 dialysis patients. Generalized linear modeling with bootstrapping tested the marginal cost differences between different explanatory variables to estimate 'best casemix'/'worst casemix' cost scenarios. RESULTS: The mean annual patient hospital expenditure was highest for urban models at $97 928 (SD $21 261) and $43 440 (SD $5 048) and lowest for remote at $19 584 (SD $4 394). When combined with the observed maintenance dialysis costs, expenditure was the highest for urban models at $148 510 (SD $19 774). The incremental cost increase of dialysing in an urban area, compared with a rural area, for a relocated person from a remote area, was $5 648 more and increased further for those from remote and very remote areas to $10 785 and $15 118 respectively. CONCLUSIONS: This study demonstrates that dialysis treatment in urban areas for relocated people has health and cost implications that maybe greater than the cost of remote service delivery. The study emphasises the importance of considering all health service costs and cost consequences of service delivery models. KEY POINTS FOR DECISION MAKERS: Relocation for dialysis treatment has serious health and economic consequences. Relocated people have low dialysis attendance and high hospital costs in urban areas. While remote dialysis service models are more expensive than urban models, the comparative cost differences are significantly reduced when all health service costs are included. The delivery of equitable and accessible dialysis service models requires a holistic approach that incorporates the needs of the patient; hence dialysis cost studies must consider the full range of cost impacts beyond the dialysis treatments alone.

Most people requiring ongoing treatment for end-stage kidney disease in the Northern Territory (NT) identify as Aboriginal with the majority residing in areas classified as remote or very remote. Unlike other jurisdictions in Australia, haemodialysis in a satellite unit is the most common form of treatment. However, there is a geographic mismatch between demand and service provision, with services centralised in urban areas. Patients and communities have long advocated for services at or closer to home, maintaining that the consequences of relocation and dislocation have far reaching health, psychosocial and economic ramifications. We analysed retrospective hospital data for 995 maintenance dialysis patients, stratified by the model of care they received in urban, rural and remote locations. Using cost weights attributed to diagnosis codes, we costed hospital admissions, emergency department presentations and maintenance dialysis attendances, to provide a mean total health service cost/patient/year for each model of care. We found that urban services were associated with low observed maintenance dialysis and high hospital costs, but the inverse was true for remote and very remote models. Remote models had high maintenance dialysis costs (due to expense of remote service delivery and good dialysis attendance) but low hospital usage and costs. When adjusted for other variables such as age, dialysis vintage and comorbidities, lower total hospital costs were associated with rural and remote service provision. In an environment of escalating demand and constrained budgets, this study underlines the need for policy decisions to consider the full cost consequences of different dialysis service models.

Measuring health care experiences that matter to Indigenous people in Australia with cancer: identifying critical gaps in existing tools.

BACKGROUND: Measurement of patients' healthcare experiences is increasingly used as an indicator of quality of care, but there are concerns that existing measures omit information that is meaningful to patients and that results may not be used systematically to inform service improvement. Further, current approaches may be inadequate for some population groups, such as Indigenous people in Australia, whose healthcare experience is impacted by the context of colonisation and discordance between Indigenous understandings of health and the Western biomedical health system. This study aimed to assess the extent to which existing patient experience measures used in Australia collect information about critical aspects of cancer care, as previously identified by Indigenous people affected by cancer and their health care providers. METHODS: A two-stage process was used to examine the adequacy of existing patient experience measures for Indigenous people in Australia: (1) relevant tools and measures were identified and assessed, and four measures selected as suitable comparators; (2) comparators were examined in detail and mapped against topics identified in earlier research as important to Indigenous people with cancer. Gaps in topic coverage in comparators were identified. RESULTS: No comparators completely captured the critical aspects of cancer care identified by Indigenous people affected by cancer and their health care providers. The number of topics 'partially' captured by the four comparators ranged from 4 to 7 out of 9. While most topics were partially covered, the lack of questions around culture and cultural safety was notable. CONCLUSIONS: Existing tools are likely to miss key aspects of Indigenous peoples' experiences of cancer care in Australia. Failure to adequately assess care experiences related to cultural safety may compromise efforts to improve health outcomes. Addressing gaps requires development of experience measures that are strengths-based, reflect an Indigenous worldview and measure aspects of experience relevant to Indigenous people.

Health care provider perspectives on cervical screening for Aboriginal and Torres Strait Islander women: a qualitative study.

OBJECTIVE: To investigate perspectives of primary health care providers (HCPs) on providing cervical screening for Aboriginal and Torres Strait Islander women, who experience a higher burden of cervical cancer than other Australian women. METHODS: Semi-structured interviews with 13 HCPs from four Australian Indigenous primary health care centres (PHCCs). Transcripts were thematically analysed. RESULTS: HCPs discussed the need to approach cervical screening with sensitivity to women's emotional and cultural needs and sustaining relationships built on trust and respect. HCPs reported challenges in promoting screening to Aboriginal and Torres Strait Islander women due to cumbersome systems, competing clinical priorities, workforce capacity limitations and specific challenges associated with implementing the renewed National Cervical Screening Program. CONCLUSIONS: In practice, HCPs experience several challenges to delivering cervical screening. Understanding HCPs' perspectives on their approach to cervical screening delivery, and the systems in which this occurs, can help to ensure that they receive adequate support and resources to deliver cervical screening to Aboriginal and Torres Strait Islander women. Implications for public health: It is important that HCPs adopt a multi-faceted, person-centred approach to cervical screening that is responsive to women's needs and that works synchronously with supportive PHCC services and systems and the National Cancer Screening Register.

Are there systematic barriers to participation in cancer treatment trials by Aboriginal and Torres Strait Islander cancer patients in Australia?

OBJECTIVE: To identify factors that may systematically reduce opportunities for Aboriginal and Torres Strait Islander Australians to participate in cancer clinical trials. METHODS: Analysis of online documents from the Australia and New Zealand Clinical Trials Registry for cancer treatment trials (Phase 3, 4 or Not Applicable) with at least one Australian site, registered in 2014-2018. RESULTS: Among 365 eligible trials, most (89%) had sites only in major cities/inner regional areas, but 39% of Aboriginal and Torres Strait Islander Australians live outside these areas. Seven cancer types accounted for 58% of cancers among Aboriginal and Torres Strait Islander people, but only 46% of trials addressed these cancers. Most trials specified exclusions relating to comorbidities/health status. A substantial minority of trials (38%) explicitly referred to investigator opinion/judgment as a relevant determinant of patient eligibility. CONCLUSION: Aboriginal and Torres Strait Islander patients appear to have a reduced opportunity to participate in trials because of where they live, their type of cancer and their general health status, as well as for less transparent reasons relating to investigator judgment. Implications for public health: Greater transparency and greater scrutiny of barriers to trial participation for Aboriginal and Torres Strait Islander Australians are needed to ensure equitable access.

The Health and Wellbeing of Indigenous and Tribal Peoples around the Globe: Ensuring and Promoting Best Practice in Research.

Indigenous and Tribal peoples account for approximately 6 [...].

What Matters 2 Adults: a study protocol to develop a new preference-based wellbeing measure with Aboriginal and Torres Strait Islander adults (WM2Adults).

BACKGROUND: Understandings of health and wellbeing are culturally bound. Many Aboriginal and Torres Strait Islander people perceive wellbeing and quality of life (QOL) differently from the Western biomedical models of health underpinning existing QOL instruments. Any instrument to measure the wellbeing of Aboriginal and Torres Strait Islander people should be culturally appropriate and safe, include relevant dimensions, and be informed by their own values and preferences. Existing QOL instruments do not meet these standards. This study will generate a new preference-based wellbeing measure, WM2Adults, for Aboriginal and Torres Strait Islander adults, underpinned by their values and preferences. METHODS: A mixed methods approach will be used; we will employ decolonising methodologies, privilege Aboriginal and Torres Strait Islander voices and perspectives, and adopt a strengths-based approach rather than a deficit lens. Yarning Circles will be conducted with Aboriginal and Torres Strait Islander people across Australia. A candidate item pool will be developed from these data, on which psychometric analysis and validity testing will be undertaken to develop a descriptive system. Following finalisation of the descriptive system, wellbeing states will be valued using a quantitative preference-based approach (best-worst scaling) with a diverse sample of Aboriginal and Torres Strait Islander adults (n = 1000). A multinomial (conditional) logit framework will be used to analyse responses and generate a scoring algorithm for the new preference-based WM2Adults measure. DISCUSSION: The new wellbeing measure will have wide applicability in assessing the effectiveness and cost-effectiveness of new programs and services for Aboriginal and Torres Strait Islander people. Results will be disseminated through journals, conferences and policy forums, and will be shared with Aboriginal and Torres Strait Islander communities, organisations and research participants.

Indigenous Australian women's experiences of participation in cervical screening.

Aboriginal and Torres Strait Islander (collectively, Indigenous Australian) women experience a higher burden of cervical cancer than other women. The National Cervical Screening Program (NCSP) is failing to meet the needs of Indigenous Australian women, resulting in many women not regularly participating in cervical screening. However, one third of Indigenous Australian women do participate in cervical screening. The reasons that some women in this population commence and continue to screen remain unheard but could provide insights to support women who currently do not participate. We aimed to describe Indigenous Australian women's experiences and views of participation in cervical screening by yarning (a culturally-appropriate interview technique) with 50 Indigenous Australian women aged 25-70 years who had completed cervical screening in the past five years, recruited via Primary Health Care Centres (PHCCs) from three jurisdictions. Aboriginal or Torres Strait Islander women researchers conducted the interviews. Thematic analysis identified six themes: screening as a means of staying strong and in control; overcoming fears, shame, and negative experiences of screening; needing to talk openly about screening; the value of trusting relationships with screening providers; logistical barriers; and overcoming privacy concerns for women employed at PHCCs. Despite describing screening as shameful, invasive, and uncomfortable, women perceived it as a way of staying healthy and exerting control over their health. This ultimately supported their participation and a sense of empowerment. Women valued open discussion about screening and strong relationships with health providers. We identified logistical barriers and specific barriers faced by women employed at PHCCs. This study is strengthened by a research approach that centred Indigenous Australian women's voices. Understanding the experiences of Indigenous Australian women who participate in screening will help screening providers support women to start and continue to screen regularly. Recommendations for practice are provided.

BMI, physical activity, and breast cancer subtype in white, black, and Sea Island breast cancer survivors.

Higher BMI, lower rates of physical activity (PA), and hormone receptor-negative breast cancer (BC) subtype are associated with poorer BC treatment outcomes. We evaluated the prevalence of high BMI, low PA level, and BC subtype among survivors with white/European American (EA) and African American (AA) ancestry, as well as a distinct subset of AAs with Sea Island/Gullah ancestry (SI). We used the South Carolina Central Cancer Registry to identify 137 (42 EAs, 66 AAs, and 29 SIs) women diagnosed with BC and who were within 6-21 months of diagnosis. We employed linear and logistic regression to investigate associations between BMI, PA, and age at diagnosis by racial/ethnic group. Most participants (82%) were overweight/obese (P=0.46). BMI was highest in younger AAs (P=0.02). CDC PA guidelines (≥150min/week) were met by only 28% of participants. The frequency of estrogen receptor (ER)-negative BC subtype was lower in EAs and SIs than in AAs (P<0.05). This is the first study to identify differences in obesity and PA rates, and BC subtype in EAs, AAs, and SIs. BMI was higher, PA rates were lower, and frequency of ER-negative BC was higher in AAs as compared to EAs and SIs. This study highlights the need to promote lifestyle interventions among BC survivors, with the goal of reducing the likelihood of a BC recurrence. Integrating dietary and PA interventions into ongoing survivorship care is essential. Future research could evaluate potential differential immune responses linked to the frequency of triple negative BC in AAs.

Psychosocial Aspects of Delivering Cancer Care to Indigenous People: An Overview.

Globally, a growing body of evidence has reported significant disparities in cancer outcomes between indigenous and nonindigenous people. Although some effort is being made to address these disparities, relatively little attention has been directed toward identifying and focusing on the psychosocial aspects of cancer care for indigenous patients, which are critical components in improving cancer care and outcomes. The purpose of this article is to describe the results of a scoping review of the psychosocial aspects of cancer care for indigenous people. We highlight considerations in undertaking research in this field with indigenous people and the implications for clinical practice.