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.

Exploring the role of a facilitator in supporting family carers when embedding the iSupport for Dementia programme in care services: A qualitative study.

AIMS: To explore stakeholders' perceptions of a facilitator's role in supporting carers when embedding iSupport for Dementia psychoeducation program, in care services. METHODS: A qualitative descriptive study design was applied. Data were collected from workshops and interviews with carers of people living with dementia (PLWD)and with health and social care professionals from two tertiary hospitals and two community aged care organisations across three Australian states between October 2021 and March 2022. A thematic analysis was used to analyse data. The COREQ guideline was followed to report our findings. RESULTS: A total of 30 family carers and 45 health and social care professionals participated in the study. Three main themes and seven subthemes were identified from the data. We described the main themes as (1) the facilitator's role at the time of dementia diagnosis, (2) the facilitator's role throughout the everyday dementia care journey and (3) the facilitator's role during transition moments. CONCLUSIONS: Caring for family members with dementia is demanding and stressful for carers. Embedding a facilitator-enabled iSupport for Dementia program in hospital and community aged care settings has the potential to mitigate sources of stress associated with care recipient factors, carer factors and care service factors, and improve the health and well-being of carers and those for whom they care. RELEVANCE TO CLINICAL PRACTICE: Our findings will inform the establishment of iSupport facilitators appointed by dementia care providers in hospital and community care settings and help determine their roles and responsibilities in delivering the iSupport program. Our findings relate to nurse-led and coordinated dementia care in hospital and community aged care settings. PATIENT OR PUBLIC CONTRIBUTION: This study was co-designed with stakeholders from two aged care organisations and two tertiary hospitals. The study participants were staff employed by these organisations and carers of PLWD who were service users.

Comparisons on factors affecting residents fulfilling self-determination in ethno-specific and mainstream nursing homes: a qualitative study.

BACKGROUND: Studies revealed that supporting residents fulfilling self-determination is positively associated with their health, wellbeing and quality of life. Cross-cultural care poses significant challenges for nursing home residents to fulfil their self-determination in control of own care and maintaining meaningful connections with others. The aim of the study was to compare factors affecting residents fulfilling self-determination in ethno-specific and mainstream nursing homes. METHODS: A qualitative descriptive approach was applied to the study. Culturally competent care and person-centred care were employed as guiding frameworks. Individual interviews or a focus group with residents and family members were conducted to collect data. RESULTS: In total, 29 participants participated in the study. Three main themes were identified: communicating needs and preferences; mastering own care; and maintaining meaningful relationships. Each theme includes sub-themes that detail similarities and differences of factors affecting residents fulfilling self-determination in the two type nursing homes. Findings indicate that residents from both types of nursing homes experienced challenges to communicate their care needs and preferences in daily care activities. Moreover, residents or their representatives from both types of nursing homes demonstrated motivation and competence to master residents' care based on their individual preferences, but also perceived that their motivation was not always supported by staff or the nursing home environment. Residents' competence in mastering their care activities in ethno-specific nursing homes was based on the condition that they were given opportunities to use a language of choice in communication and staff and the nursing home demonstrated culturally competent care for them. In addition, ethno-specific nursing homes showed more recourse to support residents to maintain meaningful relationships with peers and others. CONCLUSIONS: Culturally competent care created by staff, nursing homes and the aged care system is a basic condition for residents from ethnic minority groups to fulfil self-determination. In addition, person-centred care approach enables residents to optimise self-determination.

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.

Young-Onset Gastrointestinal Adenocarcinoma Incidence and Survival Trends in the Northern Territory, Australia, with Emphasis on Indigenous Peoples.

Background and Aims: A concerning rise in incidence of young-onset cancers globally led to the examination of trends in incidence and survival of gastrointestinal (GI) adenocarcinomas in the Northern Territory (NT), Australia, over a 28-year period, with a special emphasis on Indigenous peoples. Methods: This cross-sectional analysis of a prospective longitudinal database, NT Cancer Registry (1990−2017), includes all reported cases of GI (oesophagus, gastric, small intestinal, pancreas, colon, and rectum) adenocarcinomas. Poisson regression was used to estimate incidence ratio ratios, and survival was modelled using Cox proportional hazard models separately for people aged 18−50 years and >50 years. Results: A total of 1608 cases of GI adenocarcinoma were recorded during the time of the study. While the overall incidence in people 18−50 years remained unchanged over this time (p = 0.51), the rate in individuals aged >50 years decreased (IRR = 0.65 (95% CI 0.56−0.75; p < 0.0001)). Incidence rates were significantly less in females >50 years (IRR = 0.67 95% CI 0.59−0.75; p < 0.0001), and their survival was significantly better (HR = 0.84 (95%CI 0.72−0.98; p < 0.03)) compared to males. Overall survival across all GI subsites improved in both age cohorts, especially between 2010 and 2017 (HR = 0.45 (95%CI 0.29−0.72; p < 0.0007) and HR = 0.64 (95%CI 0.52−0.78; p < 0.0001), respectively) compared to 1990−1999, driven by an improvement in survival in colonic adenocarcinoma alone, as the survival remained unchanged in other GI subsites. The incidence was significantly lower in Indigenous patients compared to non-Indigenous patients, in both age cohorts (18−50 years IRR = 0.68 95% CI 0.51−0.91; p < 0.009 and >50 years IRR = 0.48 95% CI 0.40−0.57; p < 0.0001). However, Indigenous patients had worse survival rates (18−50 years HR = 2.06 95% CI 1.36−3.11; p < 0.0007 and >50 years HR = 1.66 95% CI 1.32−2.08; p < 0.0001). Conclusions: There is a trend towards an increased incidence of young-onset GI adenocarcinomas in the NT. Young Indigenous patients have lower incidence but worse survival across all GI subsites, highlighting significant health inequities in life expectancy. Targeted, culturally safe Indigenous community-focussed programs are needed for early detection and patient-centred management of GI adenocarcinomas.

A nurse-led multicentre randomized controlled trial on effectiveness and cost-effectiveness of Chinese iSupport for dementia program: A study protocol.

AIMS: To describe a nurse-led multicentre randomized controlled trial protocol developed to evaluate the effectiveness and cost-effectiveness of a Chinese iSupport for Dementia program in Australia and Greater China including mainland China, Taiwan, Hong Kong and Macau. DESIGN: A multicentre randomized controlled trial following the SPIRIT checklist. METHODS: Participants in the study will be recruited from Australia and Greater China and will be randomly assigned to the intervention group or the usual care group. Interventions will include self-learning of the iSupport program, virtual peer support and nurse program facilitator support for 6 months. Primary outcome measures will be the 12-Item Short-Form Health Survey. Secondary outcome measures will include: Revised Scale for Caregiving Self-efficacy; Quality of Social Support Scale; Revised Memory and Behaviour Problem Checklist; the Quality of Life in Alzheimer's Disease-Proxy; usages of care services; and cost-effectiveness of the intervention. Outcomes will be measured at baseline, 6 months and 9 months from the baseline. Caregivers' experiences of the peer support will be explored. This project was funded by the National Foundation for Australia-China Relations, Australian Government (Project ID: NFACR216). The total amount is $440,000 Australian dollars (or £ 236,231). DISCUSSION: Approximately, 20% of people living with dementia in the world live in Australia and Greater China. Older Chinese are usually cared for by family caregivers at home due to the influence of Confucianism. However, free and online psychoeducation programs for this large cohort of caregivers are not available or accessible. The World Health Organization iSupport for Dementia is an evidence-based online psychoeducation program for caregivers. Implementing a culturally adapted Chinese iSupport program will address this gap in supporting caregivers. IMPACT: This study will provide research evidence on effectiveness and cost-effectiveness of an online psychoeducation program for caregivers. Findings will inform policy and practice development.

Conceptualizing problems with symptoms, function, health behavior, health-seeking skills, and financial strain in breast cancer survivors using hierarchical clustering.

PURPOSE: Determine whether a diverse set of problems experienced by breast cancer survivors (BCS) following curative treatment can be formulated into a reduced number of clusters, potentially simplifying the conceptualization of these problems. METHOD: Female BCS were recruited from four cancer hospitals in China. The Chinese translation of the Cancer Survivor Profile (CSPro) was used to measure 18 common problem areas, as supported by epidemiological and phenomenological research. The Functional Assessment of Cancer Therapy-Breast (FACT-B) was used to measure quality of life, as a validation of any observed groupings. Hierarchical clustering using multiple distance criteria and aggregation methods to detect patterns of problems was used. RESULTS: A total of 1008 BCS (mean 46.51 years old) living in both urban and rural areas were investigated. Hierarchical cluster analysis identified two major clusters of problems. One set was classified as "functional limitations," while the other cluster was labeled "multi-problems." Those who fell into the multi-problem cluster experienced poorer quality of life. CONCLUSION: Eighteen non-medical problems were broken down into two major clusters: (1) limitations in higher level functions required of daily life and (2) limitations in health care-seeking skills, problems with certain symptoms, unhealthy behaviors, and financial problems related to cancer. The breakdown of problem areas into these two clusters may help identify common mechanisms. IMPLICATIONS FOR CANCER SURVIVORS: In the future, the search for common clusters and the mechanisms for the many problems that breast cancer survivors and other cancer survivors can experience following primary treatment may improve how we help manage these problems in the future.

Corrigendum to: Developing economic measures for Aboriginal and Torres Strait Islander families on out-of-pocket healthcare expenditure.

Objective Out-of-pocket healthcare expenditure (OOPHE) has a significant impact on marginalised households. The purpose of this study was to modify a pre-existing OOPHE survey for Aboriginal and Torres Strait Islander households with children. Methods The OOPHE survey was derived through a scoping review, face and content validity, including judgement quantification with content experts. Exploratory factor analyses determined factor numbers for construct validity. Repeatability through test-retest processes and reliability was assessed through internal consistency. Results The OOPHE survey had 168 items and was piloted on 67 Aboriginal and Torres Strait Islander parents. Construct validity assessment generated a 62-item correlation matrix with a three-factor model. Across these factors, item loadings varied, 10 items with high correlations (>0.70) and 20 with low correlations (Conclusion The low level of item loadings to factors in the OOPHE survey indicates interconnectedness across the three-factor model, and reliability results suggest systemic differences. Impeding factors may include cohort homogeneity and survey length. It is unknown how cultural and social nuances specific to Aboriginal and Torres Strait Islander households impacts on results. Further work is warranted. What is known about the topic? Out-of-pocket healthcare expenditure (OOPHE) are expenses not covered by universal taxpayer-funded health insurance. In elderly Australians or those with chronic conditions, OOPHE can cause substantial burden and financial hardship and, in the most extreme cases, induce bankruptcy. Despite higher hospital admissions and disease burden, little is known about how OOPHE impacts Aboriginal and Torres Strait Islander families. Additionally, in Australia, no OOPHE survey tools have been appropriately assessed; this includes for use with Aboriginal and Torres Strait Islander families. What does this paper add? This pilot study modified a pre-existing Australian OOPHE survey for use with Aboriginal and Torres Strait Islander households with children. Knowledge interface methodology was used to bring together Indigenous knowledges with quantitative survey methods. This was critical to ensuring Indigenous knowledges were central to the overall pilot study across item creation, participant focus, outcome contextualisation, interpretation, and resetting dominant norms. Outcomes have demonstrated pertinent points for future work in this area, such as the complexities in developing robust, culturally safe and specific surveys, which reach ideal psychometric levels of validity and reliability for Aboriginal and Torres Strait Islander communities. Certainly, it raises questions for current and future research using surveys in Aboriginal and Torres Strait Islander communities, which are generic and not purpose-built. What are the implications for practitioners? We recommend that OOPHE surveys should be developed with Aboriginal and Torres Strait Islander families from the outset, so they can include important contextual factors for Aboriginal and Torres Strait Islander households.

Evaluation of a nurse-led education program to improve cross-cultural care for older people in aged care.

BACKGROUND: Cultural diversity is significant in aged care facilities. Registered nurses play a leading role in the care setting. Nurse-led education interventions to improve the cultural competence of aged care workers are in high demand. AIM: The aims of the study were to evaluate the effect of a nurse-led cross-cultural care program on cultural competence of Australian and overseas-born care workers. DESIGN: A pre- and post-evaluation design and a sub-group analysis. SETTINGS AND PARTICIPANTS: This study was undertaken in four large-sized aged care facilities in Australia. Direct care workers were invited to participate in the study. METHODS: The intervention lasted 12 months. Data were collected at baseline, 6 months and 12 months using the Clinical Cultural Competency Questionnaire and site champion reports. One-way ANOVA was applied to determine the changes of outcomes over time for the whole group. A mixed effect linear regression model was applied in the sub-group analyses to compare the differences of outcomes between the Australian-born and overseas-born groups. RESULTS: One hundred and thirteen staff participated in the study including Australian-born (n = 62) and overseas-born (n = 51). Registered nurses were trained as site champions to lead the program. The results showed a statistically significant increase in participants' scores in Knowledge (p = .000), Skills (p = .000), Comfort Level (p = .000), Importance of awareness (p = .01) and Self-Awareness (p = .000) in a 12-month follow-up. The increased scores in the Skills (p = .02) and Comfort Level (p = .001) were higher in the Australian-born group compared to the overseas-born group. The results also showed a statistically significant increase in participants' overall satisfaction scores with the program at 12 months (p = .009). The overseas-born group demonstrated a higher score in Desire to Learn More (p = .016) and Impact of the Program on Practice (p = .014) compared to the Australian-born group. CONCLUSION: A nurse-led cross-cultural care program can improve aged care workers' cultural competence.

Aged care clinical mentoring model of change in nursing homes in China: study protocol for a cluster randomized controlled trial.

BACKGROUND: Residents living in nursing homes usually have complex healthcare needs and require a comprehensive care approach to identifying and meeting their care needs. Suboptimal quality of care is reported in nursing homes and is associated with the poor health and well-being of the residents, the burden on acute care hospitals and the high costs of healthcare for the government. The aim of this study is to test the hypothesis that an Aged Care Clinical Mentoring Model will create and sustain evidence-based quality improvement in priority areas and will be cost-effective in nursing homes in Hunan Province, China. METHODS: A cluster randomized controlled trial will be applied to the study. Fourteen nursing homes will be randomly allocated to either the intervention group (n = 7) or the control group (n = 7). Forty staff will be recruited from each nursing home and the estimated sample size will be 280 staff in each group. The intervention includes a structured, evidence-based quality improvement education program for staff to facilitate knowledge translation in evidence-based quality improvement targeting urinary incontinence, pressure injury and falls prevention. The primary outcomes are nursing homes' capacity to create and sustain quality improvement, staff perceptions of person-centered care, self-reported quality of care by residents and selected quality indicators at 12 months follow-up adjusted for baseline value. Secondary outcomes are residents' quality of life, residents' unplanned admissions to acute care hospitals, quality of care reported by staff, staff job satisfaction and staff intention to leave adjusted for baseline value. A mixed linear regression model will be adopted to compare the significant differences between groups over a 12-month period. DISCUSSION: Although the Aged Care Clinical Mentoring Model has been tested as an effective model to bring positive changes in nursing homes in a high-income country, factors affecting the adaptation of the model in nursing homes in low- and middle-income countries are unknown. The carefully planned intervention protocol enables the project team to consider enablers and barriers when adapting the Model. Therefore, strategies and resources will be in place to manage challenges while demonstrating best practice in this study. TRIAL REGISTRATION: Prospectively registered via Chinese Clinical Trial Registry (ChiCTR), ChiCTR-IOC-17013109 , Registered on 25 October 2017.

Does the removal of anonymity reduce sperm donors in Australia?

The National Health and Medical Research Council's guidelines implemented in 2005 removed a sperm donor's ability to remain anonymous in every Australian State except Victoria, which had removed anonymity completely by 1998. To assess the impact of these changes on sperm donor numbers in Australia, Assisted Reproductive Technology clinics were surveyed to obtain sperm donation figures between 2000 and 2012, with additional data collected from State-based oversight groups. There was an increase in total sperm donor numbers over the study period, including the year anonymity was removed as well as the non-anonymous period. Variations in total donor numbers and numbers of new recruits observed during the period could not be attributed to any specific change in policy or practice. As total sperm donor numbers have been increasing, the removal of a donor's ability to remain anonymous has not been detrimental to the availability of sperm donors in Australia.

General practitioners' knowledge of ageing and attitudes towards older people in China.

AIM: To explore general practitioners (GPs)knowledge of ageing, attitudes towards older people and factors affecting their knowledge and attitudes in a Chinese context. METHODS: Four hundred GPs were surveyed using the Chinese version of the Aging Semantic Differential (CASD) and the Chinese version of the Facts on Aging Quiz (CFAQ1) scale. RESULTS: The CASD scores indicated that GPs had a neutral attitude towards older people. The CFAQ1 scores indicated a low level of knowledge about ageing. GPs' awareness of the mental and social facts of ageing was poorer compared to that of physical facts. Male GPs had a significantly higher negative bias score than female GPs. No other variables had a statistically significant influence on knowledge and attitudes. CONCLUSIONS: The findings suggest the need for education interventions for GPs regarding knowledge of ageing and also provide evidence to guide future development of continuing medical programs for this group of medical doctors.

Factors contributing to caregiver burden in dementia in a country without formal caregiver support.

OBJECTIVES: To investigate caregiver burden in dementia and explore factors associated with different types of burden in a country without formal caregiver support using a province in China as a case. METHOD: Cross-sectional questionnaire survey was used to collect data. One hundred and fifty-two family caregivers of people with dementia in community settings were recruited from 2012 to 2013 using convenience sampling. Objective burden was measured by caregiving hours and dementia-related financial burden. Subjective burden was measured and analysed using the Caregiver Burden Inventory and the Neuropsychiatric Inventory-Questionnaire. Multivariate regression models were employed to analyse factors associated with each type of subjective burden. RESULTS: Five types of subjective burden were measured by the Caregiver Burden Inventory, namely, physical burden, emotional burden, time-dependence burden, developmental burden, and social burden. Caregiver distress, as a subjective burden, was measured by the Neuropsychiatric Inventory-Questionnaire and reported by relating to the severity of care recipients' behavioural and psychological symptoms of dementia. This caregiver cohort showed a high level of physical, time-dependence, and developmental burdens, but a low level of emotional and social burdens. Factors contributing to each type of subjective burden measured by the Caregiver Burden Inventory differed from each other. CONCLUSION: The high level of objective and subjective burdens identified in this study suggests that government-funded formal caregiver support should be established and services should be designed to target different types of burdens and factors contributing to these burdens.

Modelling the population-level impact of tai-chi on falls and fall-related injury among community-dwelling older people.

OBJECTIVE: To model the population level impact of tai-chi on future rates of falls and fall-related injury in older people as a tool for policy development. DESIGN: An epidemiological and economic model for estimating population-level effectiveness of tai-chi. SETTING: Australia, 2009. Patients or subjects Australian community-dwelling population aged 70+ years, ambulatory and without debilitating conditions or profound visual defects. Intervention Group-based tai-chi, for 1 h twice weekly for 26 weeks, assuming no sustained effect beyond the intervention period. Main outcome measure Total falls and fall-related hospitalisation prevented in 2009. RESULTS: Population-wide tai-chi delivery would prevent an estimated 5440 falls and 109 fall-related hospitalisations, resulting in a 0.18% reduction in the fall-related hospital admission rate for community-dwelling older people. The gross costs per fall and per fall-related hospital admission prevented were $A4414 (€3013) and $A220,712 (€150,684), respectively. A total investment of $A24.01 million (€16.39 million), equivalent to 4.2% of the cost of fall-related episodes of hospital care in 2003/4, would be required to provide tai-chi for 31,998 people and achieve this effect. CONCLUSIONS: Substantial investment in, and high population uptake of, tai-chi would be required to have a large effect on falls and fall-related hospitalisation rates. Although not accounted for in this study, investment in tai-chi is likely to be associated with additional significant health benefits beyond falls prevention. This approach could be applied to other interventions to assist selection of the most cost-effective falls-prevention portfolio for Australia and other countries.