Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies

Background: Advance care planning aims to ensure that care received during serious and chronic illness is consistent with the person’s values, preferences and goals. However, less than 40% of people with dementia undertake advance care planning internationally.Aim: This study aims to describe the perspectives of people with dementia and their carers on advance care planning and end-of-life care.Design: Systematic review and thematic synthesis of qualitative studies.Data sources: Electronic databases were searched from inception to July 2018.Results: From 84 studies involving 389 people with dementia and 1864 carers, five themes were identified: avoiding dehumanising treatment and care (remaining connected, delaying institutionalisation, rejecting the burdens of futile treatment); confronting emotionally difficult conversations (signifying death, unpreparedness to face impending cognitive decline, locked into a pathway); navigating existential tensions (accepting inevitable incapacity and death, fear of being responsible for cause of death, alleviating decisional responsibility); defining personal autonomy (struggling with unknown preferences, depending on carer advocacy, justifying treatments for health deteriorations); and lacking confidence in healthcare settings (distrusting clinicians’ mastery and knowledge, making uninformed choices, deprived of hospice access and support at end of life).Conclusion: People with dementia and their carers felt uncertain in making treatment decisions in the context of advance care planning and end-of-life care. Advance care planning strategies that attend to people’s uncertainty in decision-making may help to empower people with dementia and carers and strengthen person-centred care in this context

\u201cGive, but Give until It Hurts\u201d: The Modulatory Role of Trait Emotional Intelligence on the Motivation to Help

Two studies investigated the effect of trait Emotional Intelligence (trait EI) on people\u2019s moti- vation to help. In Study 1, we developed a new computer-based paradigm that tested partic- ipants\u2019 motivation to help by measuring their performance on a task in which they could gain a hypothetical amount of money to help children in need. Crucially, we manipulated partici- pants\u2019 perceived efficacy by informing them that they had been either able to save the chil- dren (positive feedback) or unable to save the children (negative feedback). We measured trait EI using the Trait Emotional Intelligence Questionnaire\u2013Short Form (TEIQue-SF) and assessed participants\u2019 affective reactions during the experiment using the PANAS-X. Results showed that high and low trait EI participants performed differently after the presen- tation of feedback on their ineffectiveness in helping others in need. Both groups showed increasing negative affective states during the experiment when the feedback was negative; however, high trait EI participants better managed their affective reactions, modulating the impact of their emotions on performance and maintaining a high level of motivation to help. In Study 2, we used a similar computerized task and tested a control situation to explore the effect of trait EI on participants\u2019 behavior when facing failure or success in a scenario unre- lated to helping others in need. No effect of feedback emerged on participants\u2019 emotional states in the second study. Taken together our results show that trait EI influences the impact of success and failure on behavior only in affect-rich situation like those in which people are asked to help others in need

IMpleMenting Effective infection prevention and control in ReSidential aged carE (IMMERSE): protocol for a multi-level mixed methods implementation study

Background Older people living in residential aged care facilities are at high risk of acquiring infections such as influenza, gastroenteritis, and more recently COVID-19. These infections are a major cause of morbidity and mortality among this cohort. Quality infection prevention and control practice in residential aged care is therefore imperative. Although appointment of a dedicated infection prevention and control (IPC) lead in every Australian residential aged care facility is now mandated, all people working in this setting have a role to play in IPC. The COVID-19 pandemic revealed inadequacies in IPC in this sector and highlighted the need for interventions to improve implementation of best practice. Methods Using mixed methods, this four-phase implementation study will use theory-informed approaches to: (1) assess residential aged care facilities’ readiness for IPC practice change, (2) explore current practice using scenario-based assessments, (3) investigate barriers to best practice IPC, and (4) determine and evaluate feasible and locally tailored solutions to overcome the identified barriers. IPC leads will be upskilled and supported to operationalise the selected solutions. Staff working in residential aged care facilities, residents and their families will be recruited for participation in surveys and semi-structured interviews. Data will be analysed and triangulated at each phase, with findings informing the subsequent phases. Stakeholder groups at each facility and the IMMERSE project’s Reference Group will contribute to the interpretation of findings at each phase of the project. Discussion This multi-site study will comprehensively explore infection prevention and control practices in residential aged care. It will inform and support locally appropriate evidence-based strategies for enhancing infection prevention and control practice

Impediments to effective altruism: the role of subjective preferences in charitable giving

Charity could do the most good if every dollar donated went to causes that produced the greatest welfare gains. In line with this proposition, the “Effective Altruism” movement seeks to provide individuals with information regarding the effectiveness of charities in hopes that they will donate to organizations that maximize the social return of their donation. This paper investigates the extent to which presenting effectiveness information leads people to choose more effective charities. We find that even when effectiveness information is made easily comparable across options, it has a limited impact on choice. Specifically, people frequently choose less effective charity options when those options represent more subjectively preferred causes. In contrast to making a personal donation decision, outcome metrics are used to a much greater extent when choosing financial investments and when allocating aid resources as an agent of an organization. Implications for Effective Altruism are discussed

Interviewing Older People in Residential Aged Care About Sexuality: Difficulties and Challenges

Sexuality is a sensitive topic that can be awkward and difficult to research qualitatively. When the research participants are older people living in residential aged care, some of whom have dementia, the process can be even more challenging. In this article, we outline the difficulties encountered in conducting face-to-face qualitative interviews with older people in residential aged care as part of a research project on sexuality conducted in the states of Victoria and Queensland, Australia. We explore issues surrounding ethics and recruitment and considerations for accessing residents with cognitive impairment, difficulties with the interview process, and the collection of meaningful data from participants. We provide advice and recommendations for future researchers on how to potentially minimize problems associated with conducting qualitative face-to-face interviews on sexuality with older people in residential aged care

Euthymius Zigabenus

Respect for a person's right to make choices and participate in decision making is generally seen as central to quality of life and well-being. When a person moves into a residential aged care facility (RACF), however, decision making becomes more complicated, particularly if the person has a diagnosis of dementia. Little is known about how staff in RACFs perceive that they support decision making for people with dementia within their everyday practice, and this article seeks to address this knowledge gap. The article reports on the findings of a qualitative study conducted in the states of Victoria and Queensland, Australia with 80 direct care staff members. Findings revealed that the participants utilized a number of strategies in their intention to support decision making for people with dementia, and had an overall perception that "a little effort goes a long way.

Audio-visual presentation of information for informed consent for participation in clinical trials

BACKGROUND: Informed consent is a critical component of clinical research. Different methods of presenting information to potential participants of clinical trials may improve the informed consent process. Audio-visual interventions (presented, for example, on the Internet or on DVD) are one such method. We updated a 2008 review of the effects of these interventions for informed consent for trial participation. OBJECTIVES: To assess the effects of audio-visual information interventions regarding informed consent compared with standard information or placebo audio-visual interventions regarding informed consent for potential clinical trial participants, in terms of their understanding, satisfaction, willingness to participate, and anxiety or other psychological distress. SEARCH METHODS: We searched: the Cochrane Central Register of Controlled Trials (CENTRAL), The Cochrane Library, issue 6, 2012; MEDLINE (OvidSP) (1946 to 13 June 2012); EMBASE (OvidSP) (1947 to 12 June 2012); PsycINFO (OvidSP) (1806 to June week 1 2012); CINAHL (EbscoHOST) (1981 to 27 June 2012); Current Contents (OvidSP) (1993 Week 27 to 2012 Week 26); and ERIC (Proquest) (searched 27 June 2012). We also searched reference lists of included studies and relevant review articles, and contacted study authors and experts. There were no language restrictions. SELECTION CRITERIA: We included randomised and quasi-randomised controlled trials comparing audio-visual information alone, or in conjunction with standard forms of information provision (such as written or verbal information), with standard forms of information provision or placebo audio-visual information, in the informed consent process for clinical trials. Trials involved individuals or their guardians asked to consider participating in a real or hypothetical clinical study. (In the earlier version of this review we only included studies evaluating informed consent interventions for real studies). DATA COLLECTION AND ANALYSIS: Two authors independently assessed studies for inclusion and extracted data. We synthesised the findings using meta-analysis, where possible, and narrative synthesis of results. We assessed the risk of bias of individual studies and considered the impact of the quality of the overall evidence on the strength of the results. MAIN RESULTS: We included 16 studies involving data from 1884 participants. Nine studies included participants considering real clinical trials, and eight included participants considering hypothetical clinical trials, with one including both. All studies were conducted in high-income countries.There is still much uncertainty about the effect of audio-visual informed consent interventions on a range of patient outcomes. However, when considered across comparisons, we found low to very low quality evidence that such interventions may slightly improve knowledge or understanding of the parent trial, but may make little or no difference to rate of participation or willingness to participate. Audio-visual presentation of informed consent may improve participant satisfaction with the consent information provided. However its effect on satisfaction with other aspects of the process is not clear. There is insufficient evidence to draw conclusions about anxiety arising from audio-visual informed consent. We found conflicting, very low quality evidence about whether audio-visual interventions took more or less time to administer. No study measured researcher satisfaction with the informed consent process, nor ease of use.The evidence from real clinical trials was rated as low quality for most outcomes, and for hypothetical studies, very low. We note, however, that this was in large part due to poor study reporting, the hypothetical nature of some studies and low participant numbers, rather than inconsistent results between studies or confirmed poor trial quality. We do not believe that any studies were funded by organisations with a vested interest in the results. AUTHORS' CONCLUSIONS: The value of audio-visual interventions as a tool for helping to enhance the informed consent process for people considering participating in clinical trials remains largely unclear, although trends are emerging with regard to improvements in knowledge and satisfaction. Many relevant outcomes have not been evaluated in randomised trials. Triallists should continue to explore innovative methods of providing information to potential trial participants during the informed consent process, mindful of the range of outcomes that the intervention should be designed to achieve, and balancing the resource implications of intervention development and delivery against the purported benefits of any intervention.More trials, adhering to CONSORT standards, and conducted in settings and populations underserved in this review, i.e. low- and middle-income countries and people with low literacy, would strengthen the results of this review and broaden its applicability. Assessing process measures, such as time taken to administer the intervention and researcher satisfaction, would inform the implementation of audio-visual consent materials

BUILDING CAPACITY TO CARE FOR OLDER PEOPLE! HOW IS CARE OF THE OLDER PERSON TAUGHT IN AUSTRALIAN SCHOOLS OF NURSING?

Abstract As the Australian population ages the demand for nursing care which focuses on responding to the needs of the older person will increase. Few newly graduated Registered Nurses (RNs) currently enter the aged care workforce and few select a career in caring for older people; yet older people are the largest patient group in most health care environments. This research, conducted by the Australian Hartford Consortium of Gerontological Nursing Excellence (Aus-HCGNE), explored how care of the older person is currently taught in Australian schools of nursing (SoN). The interview guide included questions about: whether care of the older person is taught in separate subjects or integrated across the curriculum; academics’ qualifications; subject content; and aged care clinical placements. The head of each of the 33 Australian schools of nursing was contacted, invited to participate and asked to nominate the appropriate academics (undergraduate/curriculum co-ordinators) who would be the most appropriate person to participate in the interview. These academics were then contacted, written informed consent was obtained, interviews were scheduled and completed. This research is timely given the current Royal Commission into Aged Care Quality and Safety in Australia, one focus of which is nurses in residential aged care in respect to numbers, education and competence. This research will be completed by mid-2019. The results will be fed back to SoN to inform the development of their curricula and the preparation of future RNs who will undoubtably need to be expert in the care of older people across the health sector.</jats:p

Supporting autonomy of nursing home residents with dementia in the informed consent process

Background: In studies involving people with dementia, researchers have historically defaulted to seeking consent from a proxy, the assumption being that people with dementia are unable to provide their own informed consent. This choice denies people with dementia a voice in the consent process, thus disregarding their autonomy and agency. Recently, other options for improving the consent process have been explored. Objective: This study aimed to determine whether nursing home residents with dementia could demonstrate an ability to provide their own informed consent as determined by the Evaluation to Sign Consent instrument. Methods: As part of a larger study on the quality of life of nursing home residents, the Evaluation to Sign Consent was administered to 392 people diagnosed with dementia. Data on demographic variables, such as gender and age, as well as level of cognitive impairment, were also collected. Results: Just over one-fifth (22%) of the residents with dementia were judged as having the capacity to provide their own informed consent to participate in this specific research project. Consistent with existing literature, capacity to consent was significantly, and negatively, associated with cognitive impairment. Conclusion: This study demonstrates that assuming all people diagnosed with dementia are unable to provide informed consent for research on the basis of cognitive test scores, or on clinical assessment alone, potentially denies them the autonomy to make a decision that they may be capable of making. Research involving people with mild-to-moderate dementia needs to consider evaluating whether potential participants have the capacity to provide their own consent