Discharge intervention to improve outcomes and web-based portal engagement after stroke and transient ischaemic attack: A randomised controlled trial.

OBJECTIVES: Web-based interventions may assist in post-discharge stroke care. However, strategies for maximising uptake and engagement are needed. AIMS: To determine the: (1) effectiveness of a discharge support intervention (EnableMe web-based portal and strategies to encourage use) in improving quality of life and reducing depression (primary outcome); anxiety and unmet needs of survivors of stroke and transient ischemic attack (TIA); and (2) EnableMe use and acceptability. MATERIALS AND METHODS: An open, parallel-group, multi-centre randomised controlled trial (RCT) of the intervention compared to usual care for survivors of stroke/TIA and their support persons. Participants recruited from eight hospitals completed questionnaires at baseline, 3 and 6 months. Outcomes included quality of life, depression, anxiety and unmet needs. RESULTS: 98 survivors (n=52 intervention, n=47 control) and 30 support persons (n=11 intervention, n=19 control) enrolled in the RCT. Bayesian analyses showed substantial evidence of an intervention effect on survivors' quality of life scores at 3 months. There was moderate-to-strong evidence of a treatment effect on depression scores and strong evidence that intervention participants had fewer unmet needs at 3 and 6 months. 45 % of intervention group survivors and 63 % of support persons self-reported using EnableMe. 64 % of survivors and 84 % of support persons found it helpful. CONCLUSION: Substantial evidence for the discharge support intervention was found, with a difference between groups in survivor quality of life, depression, and unmet needs. Acceptability was demonstrated with largely positive attitudes towards EnableMe. Future research should explore different engagement strategies to improve uptake of online stroke resources.

Preferred type, timing and format of dementia information: A cross-sectional survey of carers of people living with dementia.

OBJECTIVES: To clarify the unmet information needs of carers of people living with dementia, including the stage of their care journey at which topics become relevant, and the preferred format and mode of delivery of information. METHODS: A cross-sectional survey of carers of people living with dementia was conducted between April 2022 and October 2022. Carers were recruited through public and private geriatric hospital and community clinics, aged care providers, an online research register and community dementia services. Consenting carers completed a survey assessing sociodemographic characteristics, preferred type and timing of information about dementia, accessing services, changes in behaviour/personality, changes in physical/emotional health, managing own health/well-being and preferred information format and mode of delivery. RESULTS: A total of 163 carers returned a survey (20% response rate). Most carers (75-98%) reported wanting information across a range of topics. Carers preferred general dementia information at diagnosis, information about accessing services at or within the first year of diagnosis, and information on managing symptoms as they emerged. Carers were most interested in receiving information in-person face-to-face (60% very interested), written information (51% very interested) or via face-to-face group information sessions (42% very interested). CONCLUSIONS: Carers of people living with dementia expressed a desire for information on a wide range of topics, which changed as the dementia of the person they cared for progressed. Information needs to be made available in a variety of formats to cater for differing ways in which it is consumed.

Barriers and enablers to providing evidence-based in-hospital urinary continence care: A cross-sectional survey informed by the Theoretical Domains Framework.

AIMS: To identify the barriers and enablers perceived by hospital-based clinicians to providing evidence-based continence care to inpatients. DESIGN: This was a cross-sectional study of inpatient clinicians using a questionnaire. METHODS: Acute care and rehabilitation clinicians from 15 wards that admit patients after stroke at 12 hospitals (NSW = 11, Queensland =1, metropolitan = 4, regional = 8) were invited to complete an online questionnaire. The 58 questions (answered on a 5-point Likert scale) were aligned to 13 of the 14 domains of the Theoretical Domains Framework. Results were dichotomized into 'strongly agree/agree' and 'unsure/disagree/strongly disagree' and proportions were calculated. Data collection occurred between January 2019 and March 2019. RESULTS: The questionnaire was completed by 291 participants with 88% being nurses. Barriers were found in nine domains including knowledge; skills; memory attention and decision making; emotion; environmental context and resources; behavioural regulation; social professional role; intensions, social influences; and beliefs about capabilities. Enablers were found in seven domains including goals; social influences; knowledge; skills; social, professional role and identity; reinforcement and beliefs about consequences. CONCLUSION: This multi-site, multi-professional study that included predominantly nurses highlights the barriers and enablers to inpatient continence care. Future implementation studies in inpatient continence management should address these identified barriers and enablers to improve effectiveness of implementation of evidence-based care. IMPLICATIONS FOR THE PROFESSION: This study highlights that although there are many barriers to ward nurses providing evidence-based continence care, there are also several enablers. Both should be addressed to improve practice. REPORTING METHOD: We adhered to the Checklist for Reporting Results of Internet E-Surveys (CHERRIES) (Supplementary File 1). RELEVANCE TO CLINICAL PRACTICE: Establishing barriers to practice gives a broader understanding of why practice does not occur and establishes areas where researchers and clinicians need to address in order to change behaviour.

Optimal care of people with brain cancer in the emergency department: A cross-sectional survey of outpatient perceptions.

Objective: People diagnosed with brain cancer commonly present to the emergency department (ED). There is uncertainty about essential components and processes of optimal care from the perspective of consumers, and few guidelines exist to inform practice. This study examined the perceptions of outpatients and their support persons regarding what constitutes optimal care for people with brain cancer presenting to the ED. Methods: A cross sectional descriptive survey study was undertaken. Participants included adults attending hospital outpatient clinics (n â€‹= â€‹181, 60% of eligible participants). Participants completed a survey assessing perceptions of optimal care for brain cancer patients presenting to emergency department and socio-demographic characteristics. Results: The survey items endorsed as 'essential' by participants included that the emergency department team help patients: 'understand signs and symptoms to watch out for' (51%); 'understand the next steps in care and why' (48%); 'understand if their medical condition suggests it is likely they will die in hospital' (47%); 'ask patients if they have a substitute decision maker and want that person told they are in the emergency department' (44%); 'understand the purpose of tests and procedures' (41%). Conclusions: Symptom management, effective communication and supported decision-making should be prioritised by ED teams. Further research to establish the views of those affected by brain cancer about essential care delivered in the ED setting, and to compare these views with the quality of care that is actually delivered, is warranted.

Quality of life and mood disorders of mild to moderate stroke survivors in the early post-hospital discharge phase: a cross-sectional survey study.

BACKGROUND: Exploring sociodemographic and disease characteristics that contribute to patient-reported outcomes can inform targeting of strategies to support recovery and adaptation to stroke. This study aimed to examine among a sample of stroke survivors at three months post-hospital discharge: (1) self-reported physical and mental health quality of life scores; (2) self-reported depressive and anxiety symptoms; and (3) sociodemographic and clinical predictors of these outcomes. METHODS: This cross-sectional survey study recruited stroke survivors from eight hospitals in one Australian state. Adult survivors recently discharged from hospital stroke wards (within 3 months) were mailed a study information package and invited to complete a pen-and paper survey. Survey items assessed: quality of life (SF12v2), depression (PHQ-9), anxiety (GAD-7) and sociodemographic and clinical characteristics. Predictors were examined using multiple linear regression analysis. RESULTS: Of the 1161 eligible patients who were posted a recruitment pack, 401 (35%) returned a completed survey. Participants reported a mean SF-12v2 Physical Composite Score (PCS) quality of life score of 44.09 (SD = 9.57); and a mean SF-12v2 Mental Composite Score (MCS) quality of life score of 46.84 (SD = 10.0). Approximately one third of participants (34%; n = 132) were classified as depressed (PHQ-9 ≥ 10); and 27% (n = 104) were classified as anxious (GAD-7 ≥ 8). Lower PCS was associated with being female, not employed and having a comorbid diagnosis of diabetes and atrial fibrillation. Lower MCS was associated with a history of transient ischemic attack (TIA). Males and those with higher levels of education, had greater odds of having lower depression severity; those with a history of TIA or diabetes had lower odds of having lower depression severity. Males had greater odds of having lower anxiety severity; those with a history of TIA had lower odds of having lower anxiety severity. CONCLUSION: Sub-groups of stroke survivors may be at-risk of poorer quality of life and psychological morbidity in the early post-discharge phase. These findings support the role of early identification and prioritisation of at-risk survivors at discharge, as they may require modifications to standard hospital discharge processes tailored to their level of risk.

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.

Key Informant Perspectives on Barriers to Advance Personal Planning: Results from a Qualitative Interview Study.

Advance Care Planning (ACP) relates to the process of thinking about, discussing, and potentially documenting future wishes and preferences relating to personal and health matters. Existing literature has explored ACP from the perspective of health care professionals and older people. However, data exploring the broader process of Advance Personal Planning (APP), which also accounts for plans relating to legal and financial matters, are limited. This article reports on an interview study that explored barriers to APP engagement, factors influencing the quality and future use of instruments, and opportunities for improving APP processes for older adults from the perspectives of key informants working in the fields of law, health, and aged care. Data were coded in NVivo and analysed thematically. Opportunities for improvement include education, normalising conversations, integration into usual practice, and reform. Recommendations are made at professional, community, and structural levels, with the aim of improving APP outcomes for all involved.

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.

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.

Junior Medical Officers' knowledge of advance care directives and substitute decision making for people without decision making capacity: a cross sectional survey.

BACKGROUND: For the benefits of advance care planning to be realised during a hospital admission, the treating team must have accurate knowledge of the law pertaining to implementation of advance care directives (ACDs) and substitute decision making. AIMS: To determine in a sample of Junior Medical Officers (JMOs): (1) knowledge of the correct order to approach people as substitute decision makers if a patient does not have capacity to consent to treatment; (2) knowledge of the legal validity of ACDs when making healthcare decisions for persons without capacity to consent to treatment, including the characteristics associated with higher knowledge; and (3) barriers to enacting ACDs. METHODS: A cross-sectional survey was conducted at five public hospitals in New South Wales, Australia. Interns, residents, registrars, and trainees on clinical rotation during the recruitment period were eligible to participate. Consenting participants completed an anonymous pen-and-paper survey. RESULTS: A total of 118 JMOs completed a survey (36% return rate). Fifty-five percent of participants were female and 56.8% were aged 20-29 years. Seventy-five percent of JMOs correctly identified a Guardian as the first person to approach if a patient did not have decision-making capacity, and 74% correctly identified a person's spouse or partner as the next person to approach. Only 16.5% identified all four persons in the correct order, and 13.5% did not identify any in the correct order. The mean number of correct responses to the questions assessing knowledge of the legal validity of ACDs was 2.6 (SD = 1.1) out of a possible score of 6. Only 28 participants (23.7%) correctly answered four or more knowledge statements correctly. None of the explored variables were significantly associated with higher knowledge of the legal validity of ACDs. Uncertainty about the currency of ACDs and uncertainty about the legal implications of relying on an ACD when a patient's family or substitute decision maker disagree with it were the main barriers to enacting ACDs. CONCLUSION: JMOs knowledge of the legal validity of ACDs for persons without decision making capacity and the substitute decision making hierarchy is limited. There is a clear need for targeted education and training to improve knowledge in this area for this cohort.

A Systematic Review of the Development and Implementation of Needs-Based Palliative Care Tools in Heart Failure and Chronic Respiratory Disease.

Background: The impetus to develop and implement tools for non-malignant patient groups is reflected in the increasing number of instruments being developed for heart failure and chronic respiratory diseases. Evidence syntheses of psychometric quality and clinical utility of these tools is required to inform research and clinical practice. Aims: This systematic review examined palliative care needs tools for people diagnosed with advanced heart failure or chronic respiratory diseases, to determine their: (1) psychometric quality; and (2) acceptability, feasibility and clinical utility when implemented in clinical practice. Methods: Systematic searches of MEDLINE, CINAHL, Embase, Cochrane and PsycINFO from database inception until June 2021 were undertaken. Additionally, the reference lists of included studies were searched for relevant articles. Psychometric properties of identified measures were evaluated against pre-determined and standard criteria. Results: Eighteen tools met inclusion criteria: 11 were developed to assess unmet patient palliative care needs. Of those, 6 were generic, 4 were developed for heart failure and 1 was developed for interstitial lung disease. Seven tools identified those who may benefit from palliative care and include general and disease-specific indicators. The psychometric qualities of the tools varied. None met all of the accepted criteria for psychometric rigor in heart failure or respiratory disease populations. There is limited implementation of needs assessment tools in practice. Conclusion: Several tools were identified, however further validation studies in heart failure and respiratory disease populations are required. Rigorous evaluation to determine the impact of adopting a systematic needs-based approach for heart failure and lung disease on the physical and psychosocial outcomes of patients and carers, as well as the economic costs and benefits to the healthcare system, is required.

Effectiveness of information and communications technology interventions for stroke survivors and their support people: a systematic review.

PURPOSE: To examine the effectiveness of self-directed, off-the-shelf information and communications technology (ICT)-based interventions in improving the quality of life, physical and psychosocial outcomes of community-dwelling stroke survivors and their support persons (SP). METHODS: Medline, EMBASE, CINAHL and Cochrane databases were searched (2006-19th June 2020) for randomized controlled trials, controlled trials, controlled before and after studies, or interrupted time series studies that met the eligibility criteria. The quality of included studies was assessed. Interventions effectiveness was narratively synthesized, as was participant adherence and acceptability. RESULTS: Seventeen studies were eligible. Three studies were rated as low risk of bias across all methodological review criteria. Nine studies reported on interventions delivered using self-directed computer programs, two studies utilized internet or web-based support programs and six studies used mobile phone interventions. Few studies reported on intervention acceptability or adherence. Those that did generally reported good acceptability, although adherence was variable. Fifteen studies reported significant positive effects for at least one outcome examined including stroke-specific outcomes, physical outcomes, behavioural outcomes and health service use. No studies found an effect for psychosocial wellbeing. CONCLUSION: ICT-based interventions are likely to provide benefit to stroke survivors and their SPs. However, there is a need for further robustly designed intervention studies that include larger sample sizes, longer follow-up, and outcomes for SPs.Implications for RehabilitationICT-based interventions with minimal clinician supervision are likely to provide some benefits to stroke survivors and their SPs.There is insufficient evidence to allow recommendations to rehabilitation professionals regarding the type, length and intensity of ICT-based interventions for specific targeted outcomes.Rehabilitation professionals should use professional judgement prior to recommending ICT-based interventions to stroke survivors and their SPs.

Prioritising national dementia guidelines for general practice: A Delphi approach.

OBJECTIVES: Australian guidelines for dementia cover 109 recommendations for dementia care. Knowing which recommendations to implement poses a challenge for general practitioners (GPs). This study aimed to gather general practice perspectives of priority recommendations for GPs in their practice. METHODS: To explore which recommendations are most important and those requiring the greatest support in GP implementation, a Delphi study was conducted. Thirty-six GPs, 4 practice nurses and 1 medical services director completed two rounds of email questionnaires. RESULTS: Recommendations requiring support for GP implementation relate to early assessment of behavioural and psychological symptoms; mental health interventions tailored to the person's preferences and abilities; language and cultural barriers in access to information and services; and cognitive and learning needs in treatment delivery. CONCLUSIONS: It is critical to understand where support may be needed for GPs to successfully implement recommendations to improve care provided to people with dementia and their carers.

Nurses' perceptions, experiences and involvement in the provision of end-of-life care in acute hospitals: A mapping review of research output, quality and effectiveness.

BACKGROUND: Safe and high-quality end of life care is not always achieved in acute care hospitals. Nurses represent a key source of information about current practice, and active participants in interventions to improve end of life care in these settings. Examining the volume, type and quality of publications in this field can help to determine whether research is following a natural scientific progression to inform best-practice end of life care. AIMS: To systematically review: (i) whether the volume and type of publications (i.e. measurement, descriptive or interventions studies) examining nurses' perceptions of, and involvement in, end-of-life care delivered in acute hospitals changed over time (i.e. since 2000); (ii) the proportion of intervention studies involving nurses that meet Risk of Bias research design criteria; and (iii) the effectiveness of intervention studies that met minimum Risk of Bias criteria. METHODS: MEDLINE, Embase, CINAHL, and PsychInfo were searched for data-based papers published in English between Jan 2000 and Dec 2020. Studies were included if they focused on nurses' perceptions of, or role in, the provision of end-of-life care in hospitals. Eligible papers were classified as descriptive, measurement or intervention studies. Intervention studies were assessed against the Risk of Bias methodological criteria for research design, and their effectiveness examined. RESULTS: A total of 131 papers met eligibility criteria for inclusion in the review. The number increased by 31% in each time period (p < 0.0001). Most studies were descriptive (n = 70; 53%), 11 were measurement studies (8%), and the remainder were intervention studies (n = 50; 38%). Thirteen intervention studies (26%) met eligibility criteria. Methodological quality of the eligible intervention studies was variable. Randomisation and blinding of outcome assessors were the domains of greatest concern. Results were variable, with larger, system-wide interventions that incorporated the expertise of the multidisciplinary healthcare team showing the most promise. CONCLUSION: There is an increasing number of studies examining nurses' perceptions of, and involvement in, end-of-life care delivered in acute hospitals. The difficulties of conducting intervention research in this field mean that many studies are descriptive in nature. Given the importance of intervention research in establishing causal relationships, larger-scale intervention studies are essential to improving the quality of end-of-life care provided to patients dying in hospital.

Limitations in health professionals' knowledge of end-of-life law: a cross-sectional survey.

BACKGROUND: Insufficient knowledge about end-of-life law can impede the provision of safe and high-quality end-of-life care. Accurate legal knowledge across health professions is critical in palliative and end-of-life settings given the reliance on multidisciplinary care. Most research has focused on doctors, finding significant knowledge gaps. The limited evidence about other health professions also suggests legal knowledge deficits. OBJECTIVE: To determine and compare levels of knowledge about end-of-life law across a broad sample of Australian health professionals and medical students, and to identify predictors of legal knowledge. METHODS: An online pre-training survey was completed by participants enrolled in a national training programme on end-of-life law. The optional survey collected demographic data and measured baseline legal knowledge and attitudes towards end-of-life law. RESULTS: Response rate was 67% (1653/2456). The final sample for analysis (n=1564, 95% of respondents), included doctors, medical students, nurses and a range of allied health professionals. Doctors and nurses had slightly higher levels of legal knowledge than did medical students and allied health professionals; all had critical knowledge gaps. Demographic and professional characteristics predicted knowledge levels, with experience of end-of-life law in practice, confidence applying law and recent continuing professional development being positively associated with legal knowledge. CONCLUSIONS: This study provides new evidence about legal knowledge across a broad range of health professions. While knowledge levels varied somewhat across professions, knowledge gaps were observed in all professional groups. Education and training initiatives to enhance knowledge of end-of-life law should be tailored to meet the specific needs of each profession.

Frailty screening among older adults receiving home care packages: a study of feasibility and prevalence.

Home care packages (HCPs) aim to support older people to remain in their homes for as long as possible. Early detection and management of frailty in community-dwelling older people may prevent or delay transfer to residential aged care. This suggests that it is important to establish mechanisms for identifying frailty among older adults. This study examined the feasibility of obtaining self-reported level of frailty from a sample of older adults receiving HCPs from an Australian aged care provider. The prevalence of frailty and sociodemographic and clinical correlates were assessed. Customers aged ≥65 years receiving an HCP from an aged care and disability service provider in New South Wales (n=158; 53.5% consent rate) completed a survey during their scheduled visit. The mean (±s.d.) total score on the Edmonton Frail Scale was 7.3±2.4 (range 1-13). The prevalence of frailty was 45% (5% 'severe frailty', 14% 'moderate frailty', 26% 'mild frailty'). Clients who had fallen in the past year had, on average, a 1.0-point higher frailty score (95% confidence interval 0.16-1.90) than those who had not. Given the high proportion of adults in our sample who were identified as frail, regular standardised assessments of frailty may assist community aged care providers to provide early intervention to reduce the risk of falls within this group of clients.

Advance care planning participation by people with dementia: a cross-sectional survey and medical record audit.

OBJECTIVES: To describe among individuals with dementia: (1) self-reported awareness of, and engagement in, advance care planning; (2) presence of advance care planning documentation in the health record and (3) concordance between self-reported completion of advance care planning and presence of documentation in the health record. METHODS: An Australian prospective multicentre audit and cross-sectional survey. Individuals diagnosed with dementia who were able to speak English and were judged by a healthcare provider as having decision-making capacity were recruited from self-selected hospitals, residential aged care facilities and general practices across Australia. RESULTS: Fifty-two people with dementia completed surveys and were included. Overall, 59.6% of participants had heard about advance care planning and 55.8% had discussed advance care planning with someone, most often a family member (48.1%). While 38.5% of participants had appointed a medical substitute decision maker, only 26.9% reported that they had written down their values and preferences for future care. Concordance between self-reported completion of advance care planning and presence of documentation in the health record was low (56.8%, κ=0.139; 57.7%, κ=0.053). CONCLUSION: Effective models that promote discussion, documentation and accessible storage of advance care planning documents for people with dementia are needed.

Psychosocial well-being of brain cancer patients and support persons: A mapping review of study types over time.

INTRODUCTION: This review examined the: (1) number of publications exploring psychosocial outcomes of adults with brain cancer and/or support persons between 1999 and 2019 and whether there has been a change in the type of research over time; and (2) proportion of intervention studies meeting Cochrane Effective Practice and Organisation of Care (EPOC) research design criteria. METHODS: Embase, The Cochrane Library, Medline and PsycINFO databases were electronically searched January 1999 to December 2019. Articles were examined against inclusion/exclusion criteria and coded into measurement, descriptive or intervention categories. Intervention studies were assessed against the EPOC design criteria. RESULTS: 220 eligible publications were identified. The number of total publications significantly increased by an average of 1 each year (95%CI = 0.7-1.3; p < 0.001). There was no significant change in the proportion of publications by study type across three time periods. Descriptive research represented the majority within each time period. Of the 17 intervention studies, only 7(41%) met EPOC design criteria. CONCLUSIONS: Published literature on brain cancer psychosocial outcomes has increased significantly. However, descriptive research dominates research output. To increase high-level knowledge that can guide psychosocial care of people with brain cancer, there is a need to undertake methodologically rigorous intervention trials.

Brain cancer patient and support persons' experiences of psychosocial care: a mapping of research outputs.

BACKGROUND: People with brain cancer and their support persons (SPs) are critical sources of information on the components of care that contribute to psychosocial outcomes. AIMS: To determine the proportion of studies that examined (1) at least one of 14 nominated components of psychosocial cancer care and (2) more than one component of care. METHODS: Medline, The Cochrane Library, PsycINFO and Embase were electronically searched for publications from January 1999 to December 2019. Publications that met the inclusion criteria were coded according to the number and type of psychosocial care components assessed from 14 listed components, and whether patient and/or SPs' views about care were elicited. RESULTS: Of the 113 included publications, 61 publications included patient-reported data only (54%), 27 included both patient and SP-reported data (24%) and 25 included SP-reported data only (22%). Most assessed a single component of care (77% of patient-reported and 71% of SP-reported). No publications assessed all 14 components. The "Psychosocial" component was the most frequently assessed component of care for patient-reported (n = 80/88, 91%) and SP-reported publications (n = 46/52, 88%). CONCLUSIONS: Publications reporting on psychosocial care in brain cancer present a relatively narrow view of patient and support person experiences. The inclusion of both patient and support person perspectives and the assessment of multiple components of care are required in future research to optimize psychosocial outcomes in brain cancer.

Participation in future planning by community-dwelling older Australians receiving aged care services: Findings from a cross-sectional survey.

OBJECTIVES: To determine in a sample of older community-dwelling adults: (1) the proportion who have engaged in medical and financial planning; (2) the factors associated with advance care directive (ACD) completion and substitute decision maker (SDM) appointment; and (3) for those without an ACD, what might prompt completion. METHODS: A cross-sectional survey was undertaken with individuals receiving community aged care services in metropolitan and regional communities. Data collection was conducted by case managers during a home visit. RESULTS: Overall, 158 individuals (M = 78 years, SD = 8.7) participated (53.5% consent rate). Financial planning participation (will = 85%; enduring power of attorney = 66%) was higher than medical planning participation (SDM: 54%; ACD: 30%). No health status factors were significantly associated with ACD completion or SDM appointment. Diagnosis of a life-limiting illness was most likely to prompt ACD completion (77.6%). CONCLUSIONS: One third of older people residing in the community have completed an ACD. Strategies to improve uptake in this vulnerable population require further exploration.