‘When a patient chooses to die at home, that’s what they want… comfort, home’ : brilliance in community-based palliative care nursing

Introduction: To redress the scholarly preoccupation with gaps, issues, and problems in palliative care, this article extends previous findings on what constitutes brilliant palliative care to ask what brilliant nursing practices are supported and promoted. Methods: This study involved the methodology of POSH-VRE, which combines positive organisational scholarship in healthcare (POSH) with video-reflexive ethnography (VRE). From August 2015 to May 2017, inclusive, nurses affiliated with a community health service who delivered palliative care, contributed to this study as co-researchers (n = 4) or participants (n = 20). Patients who received palliative care (n = 30) and carers (n = 16) contributed as secondary participants, as they were part of observed instances of palliative care. With a particular focus on the practices and experiences that exceeded expectations and brought joy and delight, the study involved capturing video-recordings of community-based palliative care in situ; reflexively analysing the recordings with the nurses; as well as ethnography to witness, experience, and understand practices and experiences. Data were analysed, teleologically, to clarify what brilliant practices were supported and promoted. Results: Brilliant community-based palliative care nursing largely involved maintaining normality in patients' and carers' lives. The nurses demonstrated this by masking the clinical aspects of their role, normalising these aspects, and appreciating alternative 'normals'. Conclusion: Redressing the scholarly preoccupation with gaps, issues, and problems in palliative care, this article demonstrates how what is ordinary is extraordinary. Specifically, given the intrusiveness and abnormalising effects of technical clinical interventions, brilliant community-based palliative care can be realised when nurses enact practices that serve to promote a patient or carer to normality. Patient or public contribution: Patients and carers contributed to this study as participants, while nurses contributed to this study as co-researchers in the conduct of the study, the analysis and interpretation of the data, and the preparation of the article

'The palliative care ambulance' : a qualitative study of patient and caregiver perspectives of an ambulance service

Background: The need for home-based palliative care is accelerating internationally. At the same time, health systems face increased complexity, funding constraints and global shortages in the healthcare workforce. As such, ambulance services are increasingly tasked with providing palliative care. Where paramedics with additional training in palliative care have been integrated into models of care, evaluations have been largely positive. Studies of patient and family carer experiences of paramedic involvement, however, are limited. Aim: To explore patient and family caregiver experiences of paramedics’ contribution to palliative care at home. Design: Qualitative interview study. We analysed data within a social constructionist epistemology using reflexive thematic analysis. Setting/participants: Participants receiving specialist palliative care in the community of a metropolitan city of Australia who requested an ambulance between January and August 2018, inclusive. Results: Participants considered paramedics with expertise and experience in palliative care as an extension of the specialist community palliative care team and held them in high regard. Participants highlighted the importance of: critical palliative care at home and a timely, responsive approach; person-centred paramedics; as well as safety and security. Conclusion: Patients and carers feel safe and secure when they know that highly responsive skilled professional support is available when an unexpected problem or sudden change arises, especially out-of-hours, and that support is delivered in an empathic and person-centred manner

Pindaan AUKU Bukan Kosmetik - Pelajar IPT tetap digalak aktif kegiatan sihat: Mohamed Khaled

Menteri Pengajian Tinggi, Datuk Seri Mohamed Khaled Nordin menafikan dakwaan pindaan Akta Universiti 1971 (AUKU) hanya sekadar kosmetik dan masih mengongkong kebebasan pelajar

“Physical well-being is our top priority”: Healthcare professionals' challenges in supporting psychosocial well-being in stroke services

Background Following stroke, a sense of well-being is critical for quality of life. However, people living with stroke, and health professionals, suggest well-being is not sufficiently addressed within stroke services, contributing to persistent unmet needs. Knowing that systems and structures shape clinical practice, this study sought to understand how health professionals address well-being, and to examine how the practice context influences care practice. Methods Underpinned by Interpretive Description methodology, we interviewed 28 health professionals across multiple disciplines working in stroke services (acute and rehabilitation) throughout New Zealand. Data were analysed using Applied Tensions Analysis. Results Health professionals are managing multiple lines of work in stroke care: biomedical work of investigation, intervention and prevention; clinical work of assessment, monitoring and treatment; and moving people through service. While participants reported working to support well-being, this could be deprioritised amidst the time-oriented pressures of the other lines of work that were privileged within services, rendering it unsupported and invisible. Conclusion Stroke care is shaped by biomedical and organisational imperatives which privilege physical recovery and patient throughput. Health professionals are not provided with the knowledge, skills, time or culture of care that enable them to privilege well-being within their work. This has implications for the well-being of people with stroke, and the well-being of health professionals. In making these discourses and culture visible, and tracing how these impact on clinical practice, we hope to provide insight into why well-being work remains other to the ‘core’ work of stroke, and what needs to be considered if stroke services are to better support people’s well-being. Patient or public contributions People with stroke, family members, and people who provide support to people with stroke, and health professionals set priorities for this research. They advised on study conduct and have provided feedback on wider findings from the research

Older persons’ and their caregivers’ perspectives and experiences of research participation with impaired decision-making capacity: A scoping review

Background and Objectives: Human research ethics statements support equitable inclusion of diverse groups. Yet older people are under-represented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. Research Design and Methods: Scoping review of literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. Results: From 4171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods and foci, with hypothetical scenarios, quantitative analyses and examination of proxy consent predominating. Participants (n=7331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%) and older persons with dementia/cognitive impairment (6%). Synthesis identified two themes: willingness to participate and decision-making approaches. Discussion and Implications: Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons’ and caregivers’ perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media

Erratum to: Methods for evaluating medical tests and biomarkers

[This corrects the article DOI: 10.1186/s41512-016-0001-y.]

Evidence synthesis to inform model-based cost-effectiveness evaluations of diagnostic tests: a methodological systematic review of health technology assessments

Background: Evaluations of diagnostic tests are challenging because of the indirect nature of their impact on patient outcomes. Model-based health economic evaluations of tests allow different types of evidence from various sources to be incorporated and enable cost-effectiveness estimates to be made beyond the duration of available study data. To parameterize a health-economic model fully, all the ways a test impacts on patient health must be quantified, including but not limited to diagnostic test accuracy. Methods: We assessed all UK NIHR HTA reports published May 2009-July 2015. Reports were included if they evaluated a diagnostic test, included a model-based health economic evaluation and included a systematic review and meta-analysis of test accuracy. From each eligible report we extracted information on the following topics: 1) what evidence aside from test accuracy was searched for and synthesised, 2) which methods were used to synthesise test accuracy evidence and how did the results inform the economic model, 3) how/whether threshold effects were explored, 4) how the potential dependency between multiple tests in a pathway was accounted for, and 5) for evaluations of tests targeted at the primary care setting, how evidence from differing healthcare settings was incorporated. Results: The bivariate or HSROC model was implemented in 20/22 reports that met all inclusion criteria. Test accuracy data for health economic modelling was obtained from meta-analyses completely in four reports, partially in fourteen reports and not at all in four reports. Only 2/7 reports that used a quantitative test gave clear threshold recommendations. All 22 reports explored the effect of uncertainty in accuracy parameters but most of those that used multiple tests did not allow for dependence between test results. 7/22 tests were potentially suitable for primary care but the majority found limited evidence on test accuracy in primary care settings. Conclusions: The uptake of appropriate meta-analysis methods for synthesising evidence on diagnostic test accuracy in UK NIHR HTAs has improved in recent years. Future research should focus on other evidence requirements for cost-effectiveness assessment, threshold effects for quantitative tests and the impact of multiple diagnostic tests

Erratum to: Methods for evaluating medical tests and biomarkers

[This corrects the article DOI: 10.1186/s41512-016-0001-y.]

Communicating empathy in the face of pain and suffering

This chapter will enable you to: • define empathy as it plays out (and should play out) in clinical situations; • understand the potential impact of empathic communication on the direction and outcomes of a clinical encounter; • identify the actions of clinicians, patients and family members that can generate empathy; • consider actions that can undermine the accomplishment of empathy; • develop the ability to reflect on your own practice so as to effectively communicate empathy.11 page(s