Experiences and impacts of out-of-pocket healthcare expenditure on remote Aboriginal families.

INTRODUCTION: Aboriginal Australians face significant health disparities, with hospitalisation rates 2.3 times greater, and longer hospital length of stay, than non-Indigenous Australians. This additional burden impacts families further through out-of-pocket healthcare expenditure (OOPHE), which includes additional healthcare expenses not covered by universal taxpayer insurance. Aboriginal patients traveling from remote locations are likely to be impacted further by OOPHE. The objective of this study was to examine the impacts and burden of OOPHE for rurally based Aboriginal individuals. METHODS: Participants were recruited through South Australian community networks to participate in this study. Decolonising methods of yarning and deep listening were used to centralise local narratives and language of OOPHE. Qualitative analysis software was used to thematically code transcripts and organise data. RESULTS: A total of seven yarning sessions were conducted with 10 participants. Seven themes were identified: travel, barriers to health care, personal and social loss, restricted autonomy, financial strain, support initiatives and protective factors. Sleeping rough, selling assets and not attending appointments were used to mitigate or avoid OOPHE. Government initiatives, such as the patient assistance transport scheme, did little to decrease OOPHE burden on participants. Family connections, Indigenous knowledges and engagement with cultural practices were protective against OOPHE burden. CONCLUSION: Aboriginal families are significantly burdened by OOPHE when needing to travel for health care. Radical change of government initiative and policies through to health professional awareness is needed to ensure equitable healthcare access that does not create additional financial hardship in communities already experiencing economic disadvantage.

The Benefits of Cooperative Inquiry in Health Services Research: Lessons from an Australian Aboriginal and Torres Strait Islander Health Study.

Health services research is underpinned by partnerships between researchers and health services. Partnership-based research is increasingly needed to deal with the uncertainty of global pandemics, climate change induced severe weather events, and other disruptions. To date there is very little data on what has happened to health services research during the COVID-19 pandemic. This paper describes the establishment of an Australian multistate Decolonising Practice research project and charts its adaptation in the face of disruptions. The project used cooperative inquiry method, where partner health services contribute as coresearchers. When the COVID-19 pandemic hit, data collection needed to be immediately paused, and when restrictions started to lift, all research plans had to be renegotiated with services. Adapting the research surfaced health service, university, and staffing considerations. Our experience suggests that cooperative inquiry was invaluable in successfully navigating this uncertainty and negotiating the continuance of the research. Flexible, participatory methods such as cooperative inquiry will continue to be vital for successful health services research predicated on partnerships between researchers and health services into the future. They are also crucial for understanding local context and health services priorities and ways of working, and for decolonising Indigenous health research.

Hospitalisations and in-hospital deaths following moderate to severe traumatic brain injury in Australia, 2015-20: a registry data analysis for the Australian Traumatic Brain Injury National Data (ATBIND) project.

OBJECTIVE: To describe the frequency of hospitalisation and in-hospital death following moderate to severe traumatic brain injury (TBI) in Australia, both overall and by patient demographic characteristics and the nature and severity of the injury. DESIGN, SETTING: Cross-sectional study; analysis of Australia New Zealand Trauma Registry data. PARTICIPANTS: People with moderate to severe TBI (Abbreviated Injury Score [head] greater than 2) who were admitted to or died in one of the twenty-three major Australian trauma services that contributed data to the ATR throughout the study period, 1 July 2015 - 30 June 2020. MAJOR OUTCOME MEASURES: Primary outcome: number of hospitalisations with moderate to severe TBI; secondary outcome: number of deaths in hospital following moderate to severe TBI. RESULTS: During 2015-20, 16 350 people were hospitalised with moderate to severe TBI (mean, 3270 per year), of whom 2437 died in hospital (14.9%; mean, 487 per year). The mean age at admission was 50.5 years (standard deviation [SD], 26.1 years), and 11 644 patients were male (71.2%); the mean age of people who died in hospital was 60.4 years (SD, 25.2 years), and 1686 deaths were of male patients (69.2%). The overall number of hospitalisations did not change during 2015-20 (per year: incidence rate ratio [IRR], 1.00; 95% confidence interval [CI], 0.99-1.02) and death (IRR, 1.00; 95% CI, 0.97-1.03). CONCLUSION: Injury prevention and trauma care interventions for people with moderate to severe TBI in Australia reduced neither the incidence of the condition nor the associated in-hospital mortality during 2015-20. More effective care strategies are required to reduce the burden of TBI, particularly among younger men.

Community Engagement and Psychometric Methods in Aboriginal and Torres Strait Islander Patient-Reported Outcome Measures and Surveys-A Scoping Review and Critical Analysis.

(1) Background: In healthcare settings, patient-reported outcome measures (PROMs) and surveys are accepted, patient-centered measures that provide qualitative information on dimensions of health and wellbeing. The level of psychometric assessment and engagement with end users for their design can vary significantly. This scoping review describes the psychometric and community engagement processes for PROMs and surveys developed for Aboriginal and Torres Strait Islander communities. (2) Methods: The PRISMA ScR guidelines for scoping reviews were followed, aimed at those PROMs and surveys that underwent psychometric assessment. The Aboriginal and Torres Strait Islander Quality Appraisal Tool and a narrative synthesis approach were used. (3) Results: Of 1080 articles, 14 were eligible for review. Most articles focused on a validity assessment of PROMs and surveys, with reliability being less common. Face validity with Aboriginal and Torres Strait Islander communities was reported in most studies, with construct validity through exploratory factor analyses. Methodological design risks were identified in the majority of studies, notably the absence of explicit Indigenous knowledges. Variability existed in the development of PROMs and surveys for Aboriginal and Torres Strait Islander communities. (4) Conclusions: Improvement in inclusion of Indigenous knowledges and research approaches is needed to ensure relevance and appropriate PROM structures. We provide suggestions for research teams to assist in future design.

The Australian Traumatic Brain Injury National Data (ATBIND) project: a mixed methods study protocol.

BACKGROUND: Traumatic brain injury (TBI) is the largest contributor to death and disability in people who have experienced physical trauma. There are no national data on outcomes for people with moderate to severe TBI in Australia. OBJECTIVES: To determine the incidence and key determinants of outcomes for patients with moderate to severe TBI, both for Australia and for selected population subgroups, including Aboriginal and Torres Strait Islander Australians. METHODS AND ANALYSIS: The Australian Traumatic Brain Injury National Data (ATBIND) project will analyse Australia New Zealand Trauma Registry (ATR) data and National Coronial Information Service (NCIS) deaths data. The ATR documents the demographic characteristics, injury event description and severity, processes of care, and outcomes for people with major injury, including TBI, assessed and managed at the 27 major trauma services in Australia. We will include data for people with moderate to severe TBI (Abbreviated Injury Scale [AIS] (head) score higher than 2) who had Injury Severity Scores [ISS] higher than 12 or who died in hospital. People will also be included if they died before reaching a major trauma service and the coronial report details were consistent with moderate to severe TBI. The primary research outcome will be survival to discharge. Secondary outcomes will be hospital discharge destination, hospital length of stay, ventilator-free days, and health service cost. ETHICS APPROVAL: The Alfred Ethics Committee approved ATR data extraction (project reference number 670/21). Further ethics approval has been sought from the NCIS and multiple Aboriginal health research ethics committees. The ATBIND project will conform with Indigenous data sovereignty principles. DISSEMINATION OF RESULTS: Our findings will be disseminated by project partners with the aim of informing improvements in equitable system-level care for all people in Australia with moderate to severe TBI. STUDY REGISTRATION: Not applicable.

Understanding culturally safe aged care from the perspectives of older Aboriginal Australians in rural and remote communities.

ISSUE ADDRESSED: Aboriginal and Torres Strait Islander peoples face challenges in accessing aged care and are less likely to use some services than their non-Indigenous counterparts. Culturally safe care is increasingly recognised as an enabler to improve access and quality of care. This study explored older Aboriginal peoples' perceptions and experience of culturally safe aged care. METHODS: We conducted semi-structured interviews with sixty-three older Aboriginal people, purposively sampled from three rural and remote geographic locations in South Australia, between April and October 2018, with participants who were both receiving and not receiving aged care services. We asked participants how organisations do or could meet their aged care needs. We analysed interview data inductively into themes. These themes were incorporated into six principles of culturally safe aged care which were subsequently endorsed by participants and study stakeholders. RESULTS: Participants described culturally safe aged care services as those which facilitated or maintained connection to participants' culture, traditional lands and community. Five themes were identified: maintaining cultural identity, culturally informed service delivery, culturally competent workforce, culturally supportive environments and partnerships and collaboration within the aged care service system. CONCLUSION: Addressing cultural safety in aged care will require organisations to adapt their policies, service delivery, environments and work practices to meet the needs of older Aboriginal peoples. SO WHAT? Identifying culturally safe aged care from the perspectives of older Aboriginal and Torres Strait Islander peoples provides timely insight to how services may be better designed and implemented to promote quality of life.