Advance personal planning knowledge, attitudes, and participation amongst community-dwelling older people living in regional New South Wales, Australia: A cross-sectional survey.

BACKGROUND: Advance personal planning (APP) involves planning for future periods of incapacity, including making legal decisions and documents. APP ensures that a person's values and preferences are known and respected. This study aimed to examine knowledge of APP, attitudes and confidence towards APP, and participation in APP activities among older people residing in regional and rural areas. METHODS: A cross-sectional survey was conducted with people aged over 65 years residing in and around regional towns in New South Wales, Australia. Participants responded to a social media advertisement or information provided through a community organisation. Data was collected via pen and paper survey or an online survey. The survey was developed for the study and included questions about the participant and their experiences with APP. Poisson regression modelling was conducted to explore the relationship between APP participation and APP knowledge, confidence and attitudes as well as the participant characteristics associated with APP participation. RESULTS: Overall, 216 people completed the survey. Most participants had a will (90%) but only a third (32%) had documented an advance care directive. Knowledge of APP was low with only 2.8% of participants correctly answering all 6 knowledge questions. Participants had a positive attitude towards APP and high level of confidence that they could discuss APP issues with important people in their life. Those with increased knowledge, confidence and attitude towards APP were significantly more likely to participate in APP activities. Older age and having private health insurance were significantly associated with engaging in APP activities. Increased frailty and the presence of health conditions were not associated with increased APP participation. CONCLUSIONS: There is a need to increase engagement with APP particularly among those who may be considered frail or have chronic health conditions. Increasing knowledge of, confidence and attitudes towards, APP could help to increase engagement in APP activities.

The effectiveness of internet-based group behavioural interventions on lifestyle modifications: A systematic review.

OBJECTIVES: To examine the effectiveness of internet-based group interventions incorporating social support elements in addressing behaviours related to smoking, nutrition, alcohol consumption, physical activity, and obesity. METHODS: A literature search was undertaken in six databases from inception to April 2024. Articles were eligible if they reported on group-based online interventions targeting smoking, nutrition, alcohol consumption, physical activity, and obesity, and included interactive features aimed at promoting social engagement and support. Two reviewers independently screened and assessed the quality of articles using Joanna Briggs Institute Critical Appraisal tools. A narrative analysis was used to synthesize and interpret the data to understand the effects of online interventions on lifestyle modifications. RESULTS: A total of 4063 citations underwent screening, resulting in 32 articles being deemed eligible and included in this review. Most studies examined physical activity (n = 14), followed by obesity (n = 7) and smoking (n = 6), Most studies were conducted in the USA (n = 14) and Australia (n = 11). Websites were the most utilised mode of intervention delivery (n = 11), followed by Facebook (n = 7) and mobile apps (n = 5). Group-based internet interventions were effective in improving smoking cessation, increasing physical activity and addressing obesity. However, there is insufficient data to determine their effect on promoting healthy nutrition and reducing alcohol intake. CONCLUSION: Group-based interventions delivered on the internet are effective in changing various health behaviours. This approach can offer large scale and cost-effective means to deliver behavioural interventions. However, the long-term effects and strategies for maintaining the behaviour changes are lacking, underscoring the need for further research.

Co-occurring psychological distress and alcohol or other drug use among Indigenous Australians: Data from the National Aboriginal and Torres Strait Islander Health Survey.

OBJECTIVES: To determine the prevalence and demographic, social and health characteristics associated with co-occurring psychological distress symptoms, risky alcohol and/or substance use among a national sample of Aboriginal and Torres Strait Islander people aged 15 years or older. METHODS: This study uses secondary cross-sectional data from the 2018-19 National Aboriginal and Torres Strait Islander Health Survey (NATSIHS). Data were collected via face-to-face interviews with those living in private dwellings across Australia. Participants were Aboriginal and Torres Strait Islander people (n = 10,579) aged 15 years or older. Data pertaining to psychological distress, alcohol and substance use were obtained and weighted to represent the total population of Aboriginal and Torres Strait Islander people in Australia. RESULTS: A total of 20.3% participants were found to have co-occurring psychological distress, risky alcohol use and/or substance use, and 4.0% reported co-occurrence of all three conditions. Female participants in a registered marriage and fully engaged in study or employment had lower rates of co-occurring conditions. Poorer self-rated health, one or more chronic conditions and increased experiences of unfair treatment and physical harm in the past 12 months were associated with increased rates of co-occurring conditions. CONCLUSION: A range of potential risk and protective factors were identified for co-occurring psychological distress, risky alcohol and/or substance use among Aboriginal and Torres Strait Islander people. This information is critical for planning effective holistic strategies to decrease the burden of suffering imposed upon the individual, family and community members impacted by co-occurring conditions.

Prevalence and factors associated with polydrug use among clients seeking treatment for alcohol misuse.

INTRODUCTION: The aim of this paper was to examine the client and psychosocial characteristics associated with polydrug use in patients with alcohol misuse as their primary drug of concern (PDC) seeking treatment from substance use treatment centres. METHODS: Self-report surveys were undertaken with clients attending 1 of 34 community-based substance use treatment centres across Australia with alcohol as their PDC. Survey items included client's socio-demographic characteristics, level of alcohol dependence, use of other drugs including tobacco, health and wellbeing factors including health-related quality of life. The factors associated with polydrug use (alcohol use concurrent with at least one other drug) were examined. RESULTS: In a sample of 1130 clients seeking treatment primarily for alcohol problems, 71% reported also using another drug. The most frequently used drug was tobacco (50%) followed by cannabis (21%) and benzodiazepines (15%). Excluding tobacco use, 35% of participants reported polydrug use. Factors associated with any polydrug use were younger age, lower education levels, lower levels of mental health related quality of life and housing risk (i.e., risk of eviction or experienced homelessness in past 4 weeks). When tobacco was excluded, factors associated with polydrug use were age, lower physical and mental health-related quality of life, and housing risk. DISCUSSION AND CONCLUSIONS: Most adults seeking treatment for alcohol misuse as their PDC reported using another drug in addition to alcohol. Treatment services should be designed accordingly to maximise the likelihood of treatment engagement and success.

Delivery of tobacco control programs by Aboriginal Community Controlled Health Organisations in New South Wales, Australia: A cross-sectional survey.

ISSUE ADDRESSED: To describe the characteristics of tobacco control programs (TCPs) delivered by Aboriginal Community Controlled Health Services (ACCHSs) in New South Wales (NSW), Australia. METHODS: A key informant from each ACCHS in NSW completed a 30-item online survey. For each TCP, ACCHSs were asked to provide: the target population group, program aims and activities, funding source, and whether the program had been monitored or evaluated and reflected principles of community control and engagement. RESULTS: Twenty-five of 38 eligible ACCHSs completed the survey (66% response rate). Overall, 64% of services reported currently delivering at least one TCP, almost all of which aimed to promote quitting (95%). Programs involved brief intervention for tobacco cessation (71%), referral to quit services (67%), or use of printed resources (67%). Funding sources included Local Health Districts (52% of programs), the Commonwealth Government (48%) and NSW Ministry of Health (43%). Most programs were aimed at all Aboriginal people who smoke (76%); 19% targeted women or families during pregnancy/birth. Many TCPs used culturally tailored resources (86%) and employed Aboriginal staff (86%), and 48% had been evaluated. CONCLUSIONS: A third of participating ACCHS did not have a specific TCP to address smoking among Aboriginal people, and delivery of programs was characterised by an uncoordinated approach across the state. Aboriginal staff and culturally tailored messages were a focus of existing TCP programs. SO WHAT?: Findings highlight the need for more investment in TCPs for Aboriginal people to ensure all ACCHSs can deliver evidence-based programs.

Job satisfaction and regulation in the aged care sector: staff perspectives.

BACKGROUND: The quality of care provided in residential aged care facilities is largely dependent on the job satisfaction of employees and the organisational framework and systems that they provide care in. This study aimed to explore aged care staff perceptions of job satisfaction, regulation of the sector and the Royal Commission into Aged Care Quality and Safety. METHODS: A cross-sectional survey conducted in 2019-early 2020 with staff employed in various roles at residential aged care services in Australia. The study specific survey collected views and experiences about working in the aged care sector as well as information about their role. RESULTS: A total of 167 aged care staff completed the survey of which 71% worked in a direct care role. Most participants indicated they thought they were doing a worthwhile and important job (98%), were proud to work in the sector (94%) and found the job personally rewarding (94%). However, participants also reported feeling emotionally drained by the work (37%) and fatigued by having to face a day of work (30%). 72% of participants felt the Royal Commission would lead to improvements in the care provided to residents. CONCLUSION: Aged care staff have an overall positive feeling towards their work. Additional support including increasing skills to deliver high-quality care, creating a supportive work environment to reduce job stressors and changes to the way the sector is regulated, are likely to lead to improved care.

Attitudes towards and engagement in self-directed learning among paramedics in New South Wales, Australia: a cross sectional study.

BACKGROUND: Australian paramedics must engage in continuing professional development (CPD), including self-directed learning (SDL). This study aimed to examine paramedics' attitudes towards training and learning activities and perceptions about what could increase engagement in self-directed CPD. METHODS: A cross-sectional survey was conducted with New South Wales Ambulance paramedics. The 48-item survey examined learning attitudes, attitudes towards SDL and socio-demographic and professional characteristics. RESULTS: Most of the 149 participants (19% consent rate) were male (74.5%) and worked full-time (96.5%). All participants agreed that paramedics should reflect on the quality of their practice (100%) and most were committed to undertaking learning to improve their skills and capability (95.2%). However, 26.3% of participants did not feel motivated to undertake learning and 58.9% did not feel supported. Paramedics reported neutral to modestly positive attitudes towards SDL. Most participants agreed they would be more likely to engage in SDL if they had access to training equipment at their station (91%) and dedicated time during work hours (90.4%). CONCLUSION: Paramedics are highly committed to undertaking CPD. Increased engagement may be supported by providing SDL materials at work locations and ensuring dedicated time for learning during work hours.

Documentation of cognitive impairment screening amongst older hospitalised Australians: a prospective clinical record audit.

BACKGROUND: Failure to detect cognitive impairment (CI) in hospitalised older inpatients has serious medical and legal implications, including for the implementation of care planning. This mixed methods study aimed to determine amongst hospital in-patients aged ≥ 65 years: (1) Rates of documentation of screening for CI, including the factors associated with completion of screening; (2) Rates of undocumented CI amongst patients who had not received screening during their admission; (3) Healthcare provider practices and barriers related to CI screening. METHODS: A mixed methods study incorporating a clinical audit and interviews with healthcare providers was conducted at one Australian public hospital. Patients were eligible for inclusion if they were aged 65 years and older and were admitted to a participating ward for a minimum of 48 h. Patient characteristics, whether CI screening had been documented, were extracted using a template. Patients who had not been screened for CI completed the Montreal Cognitive Assessment (MoCA) to determine cognitive status. Interviews were conducted with healthcare providers to understand practices and barriers to screening for CI. RESULTS: Of the 165 patients included, 34.5% (n = 57) had screening for CI documented for their current admission. Patients aged > 85 years and those with two or more admissions had greater odds of having CI screening documented. Among patients without CI screening documented, 72% (n = 78) were identified as cognitively impaired. While healthcare providers agreed CI screening was beneficial, they identified lack of time and poor knowledge as barriers to undertaking screening. CONCLUSIONS: CI is frequently unrecognised in the hospital setting which is a missed opportunity for the provision of appropriate care. Future research should identify feasible and effective strategies to increase implementation of CI screening in hospitals.

Experiences and preferences for advance care planning following a diagnosis of dementia: Findings from a cross-sectional survey of carers.

BACKGROUND: Future medical and financial planning is important for persons with dementia given the impact of the disease on capacity for decision making. AIMS: To explore from the perspective of carers of persons with dementia: (1) Participation in future medical and financial planning by the person they care for, including when planning was undertaken and the characteristics associated with having an advance care directive completed; (2) The type of healthcare providers who discussed advance care planning following diagnosis; and (3) Preferences for timing of discussions about advance care planning following diagnosis. METHODS: Recruitment and data collection took place between July 2018 and June 2020. Carers of persons with dementia aged 18 years and older were mailed a survey. Participants completed questions regarding completion of various future planning documents by the person they support, including time of completion and who discussed advance care planning following diagnosis. Participants were presented with information about the benefits and consequences of early and late discussions of advance care planning and asked when discussions about advance care planning were best initiated. RESULTS: 198 carers participated. Most participants were female (74%) and had been a carer for more than 2 years (82%). Most participants reported that the person with dementia they support had made a Will (97%) and appointed an Enduring Guardian (93%) and Enduring Power of Attorney (89%). Only 47% had completed an advance care directive. No significant associations were found between characteristics of persons with dementia and completion of an advance care directive. Geriatricians (53%) and GPs (51%) most often discussed advance care planning following diagnosis. Most carers thought that discussions about advance care planning should occur in the first few weeks or months following diagnosis (32%), at the healthcare provider's discretion (31%), or at the time of diagnosis (25%). CONCLUSIONS: More than half of persons with dementia do not have an advance care directive. There is variability in preferences for timing of discussions following dementia diagnosis.

Do health assessments affect time to permanent residential aged care admission for older women with and without dementia?

AIM: To investigate the effect of health assessments on permanent residential aged care admission for older Australian women with and without dementia. METHODS: A total of 1427 older Australian women who had a health assessment between March 2002 and December 2013 were matched with 1427 women who did not have a health assessment in the same period. Linked administrative datasets were used to identify health assessment use, admission to permanent residential aged care, and dementia status. Outcome was time to residential aged care admission from the matched date of health assessment. RESULTS: Women who had health assessments were less likely to be admitted to residential aged care in the short term (100 days), irrespective of dementia status (subdistribution hazard ratio [SDHR] = 0.35, 95% CI = [0.21, 0.59] for women with dementia; SDHR = 0.39, 95% CI = [0.25, 0.61] for women without dementia). However, there were no significant differences at 500- and 1000-days follow-up. At 2000-days follow-up, women who had a health assessment were more likely to be admitted to residential aged care, regardless of dementia status (SDHR = 1.41, 95% CI = [1.12, 1.79] for women with dementia; SDHR = 1.55, 95% CI = [1.32, 1.82] for women without dementia). CONCLUSIONS: Benefits from health assessments may depend on the recency of the assessment, with women less likely to be admitted to residential aged care in the short term after a health assessment. Our results add to a growing body of literature suggesting that health assessments may provide benefits to older people, including those with dementia. Geriatr Gerontol Int 2023; 23: 595-602.

Dementia is the second most feared condition among Australian health service consumers: results of a cross-sectional survey.

Fear of disease may act as a barrier to screening or early diagnosis. This cross-sectional survey of 355 people attending outpatient clinics at one Australian hospital found that cancer (34%) and dementia (29%) were the most feared diseases. Participants aged 65 years and over feared dementia the most.

A mixed methods evaluation of Quit for new life, a smoking cessation initiative for women having an Aboriginal baby.

BACKGROUND: Quit for new life (QFNL) is a smoking cessation initiative developed to support mothers of Aboriginal babies to quit smoking during pregnancy. The state-wide initiative provides support for pregnant women and their households including free nicotine replacement therapy (NRT) and follow up cessation advice. Services are also supported to implement systems-level changes and integrate QFNL into routine care. This study aimed to evaluate: (1) models of implementation of QFNL; (2) the uptake of QFNL; (3) the impact of QFNL on smoking behaviours; and (4) stakeholder perceptions of the initiative. METHODS: A mixed methods study was conducted comprising semi-structured interviews and analysis of routinely collected data. Interviews were conducted with 6 clients and 35 stakeholders involved in program implementation. Data were analysed using inductive content analysis. Aboriginal Maternal and Infant Health Service Data Collection (AMDC) records for the period July 2012-June 2015 were investigated to examine how many eligible women attended a service implementing QFNL and how many women took up a QFNL support. Smoking cessation rates were compared in women attending a service offering QFNL with women attending the same service prior to the implementation of QFNL to determine program impact. RESULTS: QFNL was implemented in 70 services located in 13 LHDs across New South Wales. Over 430 staff attended QFNL training, including 101 staff in Aboriginal-identified roles. In the period July 2012-June 2015 27% (n = 1549) of eligible women attended a service implementing QFNL and 21% (n = 320) of these were recorded as taking up a QFNL support. While stakeholders shared stories of success, no statistically significant impact of QFNL on smoking cessation rates was identified (N = 3502; Odds ratio (OR) = 1.28; 95% Confidence Interval (CI) = 0.96-1.70; p-value = 0.0905). QFNL was acceptable to both clients and stakeholders, increased awareness about smoking cessation, and gave staff resources to support clients. CONCLUSION: QFNL was perceived as acceptable by stakeholders and clients and provided care providers with knowledge and tangible support to offer women who presented at antenatal care as smokers, however, no statistically significant impact on rates of smoking cessation were found using the measures available.

The impact of organisational factors on treatment outcomes for those seeking alcohol or other drug treatment: A systematic review.

INTRODUCTION: Organisational factors have been found to be associated with health outcomes in a number of health-care settings. Despite likely being an important influence on the quality of care provided within alcohol and other drug (AOD) treatment centres, the impact of organisational factors on AOD treatment outcomes have not been extensively explored. This systematic literature review examines the characteristics, methodological quality and findings of published studies exploring the association between organisational factors and client AOD treatment outcomes. METHODS: Medline, Embase, PsycINFO and the Cochrane database were searched from 2010 to March 2022 for relevant papers. Studies meeting the inclusion criteria underwent quality assessment using the Joanna Brigg's Institute critical appraisal tool for cross-sectional studies, followed by data extraction of key variables pertaining to the aims. A narrative summary was used to synthesise the data. RESULTS: Nine studies met the inclusion criteria. Organisational factors examined included cultural competency, organisational readiness for change, directorial leadership, continuity of care practices, service access, service to needs ratios, dual diagnosis training, therapeutic optimism and the funding model/health-care system that treatment was delivered in. Outcome measures included duration, completion or continuation of treatment; AOD use; and patient perceptions of treatment outcomes. Seven out of nine papers found a significant interaction between at least one organisational variable and AOD treatment outcomes. DISCUSSION AND CONCLUSIONS: Organisational factors are likely to impact treatment outcomes for patients seeking treatment for AOD. Further examination of the organisational factors that influence AOD outcomes is needed to inform systemic improvements to AOD treatment.

What Are the Effective Components of Group-Based Treatment Programs For Smoking Cessation? A Systematic Review and Meta-Analysis.

INTRODUCTION: There is significant variation in the format and delivery of group-based smoking cessation programs. To guide research and healthcare program implementation, it is important to understand the active components of interventions. AIMS AND METHODS: This review aimed to (1) identify behavior change techniques (BCTs) used in effective group-based smoking cessation interventions, (2) determine the effectiveness of group-based smoking cessation interventions on smoking cessation at 6-month follow-up, and (3) identify the behavior change techniques (BCTs) related to effective group-based smoking cessation. The following databases were searched in January 2000 and March 2022: MEDLINE, EMBASE, CINAHL, PsycINFO, The Cochrane Library, and Web of Science. BCTs used in each study were extracted using the BCT Taxonomy. Studies that included identified BCTs were computed, and meta-analyses were conducted to evaluate smoking cessation at 6-month follow-up. RESULTS: A total of 28 BCTs were identified from 19 randomized controlled trials. Studies included an average of 5.42 ± 2.0 BCTs. The most frequent BCTs were "information about health consequences" and "problem solving." The pooled 6-month smoking cessation was higher in the group-based intervention group (OR = 1.75, 95% CI = 1.12 to 2.72, p <.001). Inclusion of the following four BCTs: "Problem solving," "Information about health Consequences," "Information about social and environmental consequences," and "Reward (outcome)" were found to be significantly associated with increased rate of 6-month smoking cessation. CONCLUSIONS: Group-based smoking cessation interventions doubles the rate of smoking cessation at 6-month follow-up. Implementing group-based smoking cessation programs, that incorporate multiple BCTs, is recommended for an effective smoking cessation care. IMPLICATIONS: Group-based smoking cessation programs improves smoking cessation outcomes in clinical trials. There is a need to incorporate effective individual BCTs techniques to enhance smoking cessation treatment outcomes. A robust evaluation is required to assess the effectiveness of group-based cessation programs in real world settings. There is also a need to consider the differential effectiveness of group-based programs and BCT impacts on populations, for example, indigenous peoples.

Exploring the Reported Strengths and Limitations of Aboriginal and Torres Strait Islander Health Research: A Narrative Review of Intervention Studies.

High quality intervention research is needed to inform evidence-based practice and policy for Aboriginal and Torres Strait Islander communities. We searched for studies published from 2008-2020 in the PubMed database. A narrative review of intervention literature was conducted, where we identified researcher reported strengths and limitations of their research practice. A total of 240 studies met inclusion criteria which were categorised as evaluations, trials, pilot interventions or implementation studies. Reported strengths included community engagement and partnerships; sample qualities; Aboriginal and Torres Strait Islander involvement in research; culturally appropriate and safe research practice; capacity building efforts; providing resources or reducing costs for services and communities; understanding local culture and context; and appropriate timelines for completion. Reported limitations included difficulties achieving the target sample size; inadequate time; insufficient funding and resources; limited capacity of health workers and services; and inadequate community involvement and communication issues. This review highlights that community consultation and leadership coupled with appropriate time and funding, enables Aboriginal and Torres Strait Islander health intervention research to be conducted. These factors can enable effective intervention research, and consequently can help improve health and wellbeing outcomes for Aboriginal and Torres Strait Islander people.

Murru Minya-informing the development of practical recommendations to support ethical conduct in Aboriginal and Torres Strait Islander health research: a protocol for a national mixed-methods study.

INTRODUCTION: Conducting ethical and high-quality health research is crucial for informing public health policy and service delivery to reduce the high and inequitable burden of disease experienced by Aboriginal and Torres Strait Islander people. Ethical guidelines and principles specifically for health research with Aboriginal and Torres Strait Islander people have been developed for use since 1987. However, there has been limited examination of how these are being applied to the conduct of research. METHODS AND ANALYSIS: Murru Minya will be a large-scale national study to examine the implementation of ethical processes in Aboriginal and Torres Strait Islander health research. A mixed-methods design will be used in four baarra (steps). The first three baarra will collect knowledge, experiences and wisdom from three key groups: Aboriginal and Torres Strait Islander communities, research academics, and Human Research Ethics Committees using online surveys, yarning, and semistructured interviews. This knowledge will inform the final baarra of developing a set of practical recommendations to support ethical conduct in Aboriginal and Torres Strait Islander health research into the future. ETHICS AND DISSEMINATION: Ethical approval for this research project has been granted by National, State and Territory Human Research Ethics Committees. This research has been developed in collaboration with Aboriginal and Torres Strait Islander researchers, Aboriginal Community Controlled Health Organisation representatives, Aboriginal community members, the National Health Leadership Forum, and Aboriginal and Torres Strait Islander research team. The knowledge translation plan will be integrated and revised throughout the project as partnerships and engagement with Aboriginal and Torres Strait Islander communities continue. All findings will be shared with peak Aboriginal research bodies and Aboriginal and Torres Strait Islander communities in ways that are meaningful to them.

Child rearing and parenting programs among First Nations' populations in high-income countries: a bibliometric review.

Objectives We set out to examine the volume, scope and quality of research related to First Nations peoples' perceptions of, and experiences with, child rearing and/or parenting programs. Methods We systematically reviewed the literature published between 2000 and 2020. Sixty-eight studies identified through electronic databases and references lists met inclusion criteria. Results The study found an 8% increase in publications in the field each year (P -value = 0.002), mostly conducted in Australia with Aboriginal and Torres Strait Islander people (n = 29, 41%). Scope included positive and negative experiences relating to: parenting from adult (n = 19 studies) and teenager (n = 4) perspectives; and pregnancy, antenatal and postnatal care from the perspective of adults (n = 23) and teenagers (n = 2). Descriptive studies included qualitative (n = 40; 58%), quantitative (n = 8, 12%) or mixed methods (n = 7, 10%). Thirteen experimental studies reported the development, acceptability and/or effectiveness of programs (19%), of which three met the Cochrane Effective Practice and Organisation of Care design criteria. Conclusions Despite an overall increase in volume, research efforts do not demonstrate a clear scientific progression. Further methodologically rigorous studies examining child rearing and/or parenting programs developed in collaboration with First Nations populations are needed.

Oncology nurse perceptions about life expectancy discussions: a cross-sectional study exploring what patients want to know, and why doctors don't disclose.

Background: Sensitive and patient-centred discussion about life expectancy has clear benefits for patients with advanced cancer and their families. The perceptions of oncology nurses about disclosure of life expectancy, and the barriers to disclosure, have rarely been explored. Objectives/Aims/Hypotheses: To examine oncology nurses' perceptions of the: (1) proportion of patients with advanced cancer who want, receive and understand estimates of life expectancy; (2) reasons why doctors may not provide estimates of life expectancy. Design: Cross-sectional survey. Methods: Australian oncology nurses who were members of a professional society or worked at a participating metropolitan cancer centre were emailed a link to an anonymous online survey. Participants provided socio-demographic characteristics and their perceptions about the proportion of patients with advanced cancer who (a) want, (b) are provided with, (c) receive and (d) understand estimates of life expectancy, as well as the reasons estimates of life expectancy may not be provided. Results: A total of 104 nurses participated. While 51% of nurses perceived that most patients (>75%) want to be provided with an estimate of their life expectancy, 63% of nurses reported that <50% of patients were provided with an estimate. Further, 85% of nurses indicated that <50% of patients understand the estimate. The most frequent reason nurses perceived doctors did not provide an estimate of life expectancy was because the doctor didn't have an accurate idea of life expectancy (80.8%). Almost one-fifth of nurses (18.3%) thought that doctors did not provide estimates because they felt it was not their responsibility to do so. Conclusions: Strategies to ensure a patient-centred approach to life expectancy discussions with patients with advanced cancer are urgently needed. Impact statement: Oncology nurses perceive that many patients with advanced cancer are not provided with an accurate estimate of their life expectancy and few understand the information provided to them.

Volume, scope, and consideration of ethical issues in Indigenous cognitive impairment and dementia research: A systematic scoping review of studies published between 2000-2021.

INTRODUCTION: High quality research involving Indigenous people with cognitive impairment and dementia is critical for informing evidence-based policy and practice. We examined the volume, scope and ethical considerations of research related to dementia with Indigenous populations globally from January 2000-December 2021. METHODS: Studies were included if they were published in English from 2000 to 2021 and provided original data that focused on cognitive impairment or dementia in any Indigenous population. RESULTS: The search yielded 13,009 papers of which, 76 met inclusion criteria. The overall number of papers increased over time. Studies were mostly conducted in Australia with Aboriginal and Torres Strait Islander people (n = 30; 39%). Twenty-six papers directly involved Indigenous participants with cognitive impairment or dementia. Of these studies, ethics approval was commonly required from two or more committees (n = 23, 88.5%). Ethical and legal governance frameworks were rarely discussed. DISCUSSION: There is a clear need for further robust studies examining cognitive impairment and dementia with Indigenous populations. Future research should consider the ethical aspects of involving Indigenous participants with cognitive impairment in research.

Junior medical doctors' decision making when using advance care directives to guide treatment for people with dementia: a cross-sectional vignette study.

BACKGROUND: Junior medical doctors have a key role in discussions and decisions about treatment and end-of-life care for people with dementia in hospital. Little is known about junior doctors' decision-making processes when treating people with dementia who have advance care directives (ACDs), or the factors that influence their decisions. To describe among junior doctors in relation to two hypothetical vignettes involving patients with dementia: (1) their legal compliance and decision-making process related to treatment decisions; (2) the factors influencing their clinical decision-making; and (3) the factors associated with accurate responses to one hypothetical vignette. METHOD: A cross-sectional survey of junior doctors, including trainees, interns, registrars and residents, on clinical rotation in five public hospitals located in one Australian state. The anonymous, investigator-developed survey was conducted between August 2018 and June 2019. Two hypothetical vignettes describing patients with dementia presenting to hospital with an ACD and either: (1) bacterial pneumonia; or (2) suspected stroke were presented in the survey. Participants were asked to indicate whether they would commence treatment, given the ACD instructions described in each vignette. RESULTS: Overall, 116 junior doctors responded (35% consent rate). In Vignette 1, 58% of respondents (n = 67/116) selected the legally compliant option (i.e. not commence treatment). Participants who chose the legally compliant option perceived 'following patient wishes' (n = 32/67; 48%) and 'legal requirements to follow ACDs' (n = 32/67; 48%) as equally important reasons for complying with the ACD. The most common reason for not selecting the legally compliant option in Vignette 1 was the 'ACD is relevant in my decision-making process, but other factors are more relevant' (n = 14/37; 38%). In Vignette 2, 72% of respondents (n = 83/116) indicated they would commence treatment (i.e. not follow the ACD) and 18% (n = 21/116) selected they would not commence treatment. (i.e. follow the ACD). Similar reasons influenced participant decision-making in Vignette 2, a less legally certain scenario. CONCLUSIONS: There are critical gaps in junior doctors' compliance with the law as it relates to the implementation of ACDs. Despite there being differences in relation to the legal answer and its certainty, clinical and ethical factors guided decision-making over and above the law in both vignettes. More education and training to guide junior doctors' clinical decision-making and ensure compliance with the law is required.