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Parents’ experiences of the financial and employment impacts of their child receiving end-of-life care: a national qualitative study
Get PDFBackground: Bereaved parents are at higher risk of poor mental and physical health outcomes than people bereaved under other circumstances. These challenges are exacerbated by the continued effects on parents’ working lives and the financial strain of a child receiving end-of-life care. There has been very little recent research of parents’ experiences of these impacts. Analysis of data from the second workstream of a national research programme on end-of-life care for infants, children and young people (ENHANCE) aimed to understand parents’ experiences of the impact on their finances and working lives while their child received end-of-life care. Methods: A multi-site qualitative study using in-depth interviews with bereaved parents, analysed using thematic analysis. Recruited through NHS sites, children’s hospices and via the social media of third sector organisations. Results: Forty-two interviews with 55 parents were conducted (Fathers = 16, Mothers = 39), representing 44 children. Four themes were developed: (1) The added cost burden; (2) Pressures of juggling work; (3) Accessing support; and (4) Financial impacts continue after a child dies. Conclusions: Financial hardship is a known consequence of having a child with a life-limiting condition, especially at the end of life, and adds considerable stress to an already painful situation, with the aftermaths continuing into bereavement. The impact is exacerbated by parents’ need to reduce work so they can spend time caring for their dying child, leaving families in a financially and emotionally vulnerable position. There needs to be a consistent approach to immediate practical support from healthcare providers; a review of benefit system delays and the abrupt stopping of Disability Living Allowance; and the development of tailored employment support for parents to remain in or rejoin the workforce
Measurable Residual Disease-Guided Therapy for Chronic Lymphocytic Leukemia
Get PDFBACKGROUND: An interim analysis of progression-free survival in this trial showed that ibrutinib-venetoclax was superior to fludarabine-cyclophosphamide-rituximab (FCR) among patients with chronic lymphocytic leukemia (CLL). Whether ibrutinib-venetoclax is more effective than ibrutinib alone is unclear. METHODS: In this phase 3, multicenter, open-label trial, we randomly assigned patients with CLL to receive ibrutinib-venetoclax, ibrutinib alone, or FCR. The primary end points were undetectable measurable residual disease (MRD) in bone marrow within 2 years in the ibrutinib-venetoclax group as compared with the ibrutinib-alone group and progression-free survival in the ibrutinib-venetoclax group as compared with the FCR group. A powered secondary end point was progression-free survival in the ibrutinib-venetoclax group as compared with the ibrutinib-alone group. Other secondary end points included overall survival. RESULTS: A total of 172 of the 260 participants (66.2%) in the ibrutinib-venetoclax group had undetectable MRD in bone marrow within 2 years, as compared with none of the 263 participants in the ibrutinib-alone group (P<0.001) and 127 of the 263 participants (48.3%) in the FCR group. With a median follow-up of 62.2 months, disease progression or death occurred in 18 participants (6.9%) in the ibrutinib-venetoclax group, as compared with 59 (22.4%) in the ibrutinib-alone group (hazard ratio, 0.29; 95% confidence interval [CI], 0.17 to 0.49; P<0.001) and 112 (42.6%) in the FCR group (hazard ratio, 0.13; 95% CI, 0.08 to 0.21; P<0.001). Progression-free survival at 5 years was 93.9% with ibrutinib-venetoclax, 79.0% with ibrutinib alone, and 58.1% with FCR. Death occurred in 11 participants (4.2%) in the ibrutinib-venetoclax group, as compared with 26 (9.9%) in the ibrutinib-alone group (hazard ratio, 0.41; 95% CI, 0.20 to 0.83) and 39 (14.8%) in the FCR group (hazard ratio, 0.26; 95% CI, 0.13 to 0.50). Sudden death occurred in 3, 8, and 4 participants in the ibrutinib-venetoclax, ibrutinib-alone, and FCR groups, respectively. CONCLUSIONS: With extended follow-up and increased enrollment, our trial showed that undetectable MRD and extendedprogression-free survival were more common with ibrutinib-venetoclax than with ibrutinib alone or FCR. The results for overall survival were also consistent with a benefit of ibrutinib-venetoclax. (Funded by Cancer Research UK and others; FLAIR ISRCTN Registry number, ISRCTN01844152; EudraCT number, 2013-001944-76.)
The Reflective Approach to Teaching Practicum Debriefing (RATPD): A Tool for Activating Key Cognitivist Principles and Achieving Reflective Teaching Practicum Outcomes. (A Research-based thought piece)
Get PDFThis research-based thought piece presents an opinion or perspective on a topic, backed by evidence and insights derived from research. It draws readers’ attention to the pervasive natureof reflection, reflective teaching, learning, and the Reflective Approach to Teaching Practicum Debriefing (RATPD) strategy. Specifically, it discusses reflective teaching, the RATPDstrategy, outcomes of a reflective teaching practicum, and key facets of cognitivist theory. Findings show that answering RATPD’s four reflective questions requires cognitively engaged reflection, which promotes deep learning and achieves several outcomes of reflective teaching practicum. The paper’s originality lies in introducing the strategy and establishing a conceptual bridge between key facets of cognitivist theory and the Reflective Approach to TeachingPracticum Debriefing (RATPD) strateg
Efficacy and safety of flupentixol-melitracen in patients with refractory chronic cough: a randomised, double-blinded, placebo-controlled clinical trial
Get PDFBackgroundThe antitussive potential of flupentixol-melitracen, an anti-anxiety and anti-depression compound, has been observed previously. We aimed to further evaluate its efficacy and safety in patients with refractory chronic cough (RCC) who were unresponsive to any other available treatments.MethodsThis randomised, double-blinded, placebo-controlled clinical trial was conducted at a single specialist cough clinic in Tongji Hspital, Shanghai, China. Adults aged 18–69 years with RCC and persistent cough despite at least two weeks of neuromodulator therapy were enrolled. Participants were randomly assigned (1:1) to receive either oral flupentixol-melitracen (flupentixol 0.5 mg + melitracen 10 mg), one tablet twice daily, or matching placebo, for two weeks, followed by a one week of off-treatment safety monitoring. Randomisation was computer-generated, with masking of participants, investigators, and outcome assessors. The co-primary endpoints were cough resolution rate (≥50% reduction in cough symptom score [CSS]) at visit four and placebo-adjusted change in CSS over time. The full analysis set (FAS) was used following the modified intention-to-treat (mITT) principle for demographic baseline analysis and efficacy analysis. The safety set (SS) was used for safety analysis and included all patients who took at least one dose of treatment and had post-dose safety records. The FAS and SS were equivalent in this study. The trial is registered with the Chinese Clinical Trial Registry, ChiCTR2000035304.FindingsBetween March 9th, 2021 and December 1st, 2023, 102 patients were enrolled and randomised. A total of 99 patients received at least one dose of treatment and were included in the primary and safety analyses (49 taking flupentixol-melitracen and 50 taking placebo). At visit four, flupentixol-melitracen arm reached significantly higher cough resolution rate (65.3% [32/49] vs 32.0% [16/50]; p = 0.0009). The adjusted mean reduction in CSS was 0.144 points greater in the flupentixol-melitracen group than in the placebo group over time (p = 0.0034). Treatment-emergent adverse events occurred in 51.0% (15/49) of patients in the flupentixol-melitracen group and 34.0% (17/50) in the placebo group. No serious adverse events or treatment-related deaths were reported. All adverse events were mild and resolved after discontinuation.InterpretationOur findings suggest that short-term use of flupentixol-melitracen may be an effective and well-tolerated treatment for RCC. However, the findings should be interpreted with caution due to key limitations, including the absence of objective cough frequency measurement and limited generalisability beyond a single-centre population. These factors may influence the precision and applicability of the observed treatment effect. Further trials using objective endpoints and longer follow-up in broader populations are needed to confirm efficacy and safety
Coordination chemistry of the calix[6]arene system: application in polymerisation catalysis and beyond
Get PDFThis perspective looks at structurally characterized examples of metal-based calix[6]arene complexes, focusing on the coordination chemistry adopted and their applications, primarily in polymerisation catalysis. In particular, we look at our attempts to utilize the ability of the calix[6]arene system to accommodate multiple metal centres, and where appropriate, we compare the catalytic behaviour with that of other metallocalix[n]arenes formed from commercially available calix[n]arenes, i.e. the smaller but more common calix[4]arene and the larger calix[8]arene system. We also discuss how synthetic efforts are now targeting calix[6]arenes for which a change of the bridge can provide additional possibilities, i.e. heteroatom bridged tetrahomodioxacalix[6]arenes (containing -CH2OCH2- bridges) and tetrahomo diazacalix[6]arenes (containing -CH2N(R)CH2- bridges, R typically is methyl). The outlook for the future, in terms of the use of calix[6]arene-based catalysts is also discussed
The Impact of Say-On-Pay on Firm Efficiency in Anglo-Saxon Economies—Do CEO Personal Traits and CG Mechanisms Matter?
Get PDFIn this study, we explore how the personal traits of CEOs and corporate governance mechanisms moderate the link between Say-on-Pay (SOP) votes and various aspects of firm efficiency. Our sample consists of 1931 firms listed in four Anglo-Saxon economies (i.e., USA, UK, Canada and Australia) during a period of notable regulatory changes. Our findings reveal a significant and positive impact of SOP votes on firm efficiency. This suggests that company executives recognise that lower efficiency leads to lower pay or even job loss. Interestingly, our analysis indicates that younger managers can contribute more to creating value and improving business performance compared to their older counterparts. However, the relationship between gender and firm efficiency remains inconclusive. Furthermore, our study highlights the limited involvement of the board of directors in driving firm efficiency. This could be attributed to inadequate monitoring, cooperation, and communication among board members, particularly in the case of audit committees, which seem to have less skilled members. Alternatively, this lack of board engagement may be due to the influence of powerful managers within the company. This paper also offers practical implications to policymakers and practitioners and suggests avenues for future research that can build upon our evidence
Attitudes before actions: how music teachers’ technological acceptance and competence shape technological behaviour in China
Get PDFTechnology can be a key aspect in facilitating progress and development in education that sometimes debates the factors that determine the use of technology and its impact on teaching and learning. In education, technology integration can enhance instruction by providing educators with more pedagogical tools, facilitating student learning, and promoting active engagement in the classroom. The Unified Theory of Acceptance and Use of Technology (UTAUT) model has been used to explain teachers’ technology acceptance (TA) and behavioural intentions in this regard. Debate exists as to whether teachers’ technological competence (TC) improves the prediction of technology acceptance behaviour and in particular the factors that influence music teachers’ technology use in China remain unclear. Considering that technological behaviour (TB) usually refers to the actions and decisions of individuals or organisations in using and adopting technological devices, this study examined the relationships between TA, TC, and TB among music teachers in China. Structural equation modelling was employed to analyse data obtained from 307 music teachers in Fujian province, China. The result identified ten influencing factors, which were then grouped into a theoretical framework entitled Technological Competence, Acceptance, and Behaviour (TCAB). This framework describes the factors influencing music teachers’ use of technology from the geographical perspective of China in which TA emerges as a crucial component that directly impacts TB, and TC indirectly affects TB by influencing TA. Although TB is a complex phenomenon that can be influenced by a variety of factors and contexts, the results suggested that music teachers’ attitudes can be a prerequisite for their actions in using technology and reflect the overall enthusiasm of music teachers for using technology in China. The study offers original perspectives on crafting a theoretical model adapted to diverse cultural settings and informs relevant stakeholders to better integrate technology into music education
Seasonal Changes in Fish eDNA Signal Vary Between Contrasting River Types
Get PDFDue to the societal reliance on goods and services provided by river systems and their close proximity to settlements, few modern-day rivers are without significant anthropogenic modifications. The natural river hydrology is often altered as a consequence of pumping water for flood alleviation, retaining water for irrigation, and modifying channels for navigation. In recent years, water pumping stations have been found to have several adverse impacts, including fish mortality (direct and indirect) and habitat fragmentation. More broadly, modern-day river systems face a myriad of anthropogenic flow and channel modifications, with varying impacts on different fish life stages. To manage such risks in line with policy, knowledge of the overall fish community and priority species present is required. It is therefore important to understand the robustness of developing survey strategies across differently managed river systems. This study investigates the seasonal patterns of environmental DNA (eDNA) metabarcoding fish detections from water samples taken across three differently managed river types over a one-year period. We observed some significant seasonal variation in detection rates and fish communities; however, this variation was not consistent among river types. Despite this, we found comparatively poor fish communities upstream of pumping stations all year round, with pumped catchments containing significantly fewer species than the adjacent main river channel and our regional control site. Finally, we highlight that seasonal variation in detectability for the overall fish community may not always reflect that of priority species. In our case, we found favorable European eel (Anguilla anguilla) detection in the summer months across all river types. It is therefore recommended that rather than focusing on overall detectability, policy-driven targeted surveys should be designed with priority species ecology in mind
The Failure of Bangladesh’s Constitutional Design
No full textAt independence in 1971, Bangladesh endorsed the Westminster parliamentary system. The choice was influenced, among others, by a desire to reverse the decades-long suppression by the Pakistani military’s authoritarian presidentialism. However, fifty-three years into its constitutional beginning, Bangladesh underwent various structural realignments such as a national party-led presidential government, several military-controlled presidential governments, authoritarian party governments, non-political caretaker governments during elections, one-party authoritarianism and lastly, another round extra-constitutional government led by non-political civil society elites. Despite all these, the 1972 scheme of parliamentary government has survived as a barebone structure. Structurally, with the rise of omnipotent Prime Ministerial dictatorship and a bureaucratic state, the legislative, judicial, and fourth-branch institutions have been brought to their knee. This chapter argues that at least four identifiable factors contribute to the failure of Bangladesh's constitutional design. The first one is the concentration of political and government powers in persons (personalization of power). The second one is the rise of a powerful civil-military establishment causing periodic military interventions and strong bureaucratic grip over public power. The third one is the lack of intra-party democracy leading to a purely partisan delegate model of political representation that clips the parliament’s scrutiny and accountability power and brings down the key democratic institutions to their knee. The fourth one is the lack of space for political opposition leading to crudely majoritarian politics that fail the country’s basic democratic processes such as free and fair elections, and regular and peaceful transfer of power
