Parallel Journeys: Perceptions of Palliative Care

The delivery of palliative care within contemporary society is discussed, with particular reference to Aotearoa New Zealand in the light of the recent publication of The New Zealand Palliative Care Strategy (2001). The viewpoint taken is largely descriptive rather than prescriptive, being based on a literature survey of international research and academic theory, which is also informed by the author’s professionally gained knowledge. Four different perspectives, comprising a mix of providers and recipients of care are investigated: those of central government planning; specialist palliative care units; aged-care complexes; and patients, family and whanau. As an area of healthcare which current demographic projections indicate will become increasingly significant, the provision of palliative care to residents of and patients within aged-care complexes receives special attention. A metaphor of “parallel travellers” on “parallel journeys” is used to provide a thematic basis to the paper. The lived experiences and perceptions of each group of “parallel travellers” are explored. Difficulties in defining and evaluating palliative care, the implications of mainstreaming, the scope of palliative care provision, the educative role of specialist palliative care providers and the current focus on mechanistic outcome measures are discussed. It is contended that the values and goals, both explicit and implicit, of the four specified groups may not at present be sufficiently congruent to optimise the effective provision of palliative care from the point of view of all concerned. While adequate resourcing and a genuinely collaborative approach among healthcare providers are both acknowledged to be critical, the potential for palliative care nurse practitioners to be appointed to the role of “care co-ordinator” alluded to within The New Zealand Palliative Care Strategy (2001), is also seen as pivotal. Insights from a postmodern perspective are offered as one possible way of achieving greater congruence

HIF-1 alpha-independent hypoxia-induced rapid PTK6 stabilization is associated with increased motility and invasion

© 2014 Landes Bioscience. PTK6/Brk is a non-receptor tyrosine kinase overexpressed in cancer. Here we demonstrate that cytosolic PTK6 is rapidly and robustly induced in response to hypoxic conditions in a HIF-1-independent manner. Furthermore, a proportion of hypoxic PTK6 subsequently re-localized to the cell membrane. We observed that the rapid stabilization of PTK6 is associated with a decrease in PTK6 ubiquitylation and we have identified c-Cbl as a putative PTK6 E3 ligase in normoxia. The consequences of hypoxia-induced PTK6 stabilization and subcellular re-localization to the plasma membrane include increased cell motility and invasion, suggesting PTK6 targeting as a therapeutic approach to reduce hypoxia-regulated metastatic potential. This could have particular significance for breast cancer patients with triple negative disease

Power/energy use cases for high performance computing

Power and Energy have been identified as a first order challenge for future extreme scale high performance computing (HPC) systems. In practice the breakthroughs will need to be provided by the hardware vendors. But to make the best use of the solutions in an HPC environment, it will likely require periodic tuning by facility operators and software components. This document describes the actions and interactions needed to maximize power resources. It strives to cover the entire operational space in which an HPC system occupies. The descriptions are presented as formal use cases, as documented in the Unified Modeling Language Specification [1]. The document is intended to provide a common understanding to the HPC community of the necessary management and control capabilities. Assuming a common understanding can be achieved, the next step will be to develop a set of Application Programing Interfaces (APIs) to which hardware vendors and software developers could utilize to steer power consumption

Arlene Raven's Legacy

Art critic Arlene Raven's life and work are the subject of seventeen visual and narrative essays and a chronology in this special issue of the journal Critical Matrix: The Princeton Journal of Women, Gender, and Culture

Cultural Humility: A Collaborative Approach to Recruiting Patients with Deliberate Self-Harm into a Multi-Hospital Randomized Controlled Trial

Objectives: The ‘SMS SOS’ Deliberate Self-Harm (DSH) Aftercare Study was conducted in Western Sydney, Australia (October 2017 to December 2020) across three large public hospitals. During this randomized controlled trial (RCT), it was observed that knowledge exchange between key stakeholders and their ‘cultural’ perspectives (for example, Mental Health Clinicians, Lived Experience Mental Health Consultants—Patient Representatives, Administrative Officers, and Researchers) was essential to effective recruitment of patients experiencing DSH. Knowledge exchange within and between cultural groups was maximised and assessed using a communication matrix. This process, transferable to other trials engaging multiple ‘cultures’, aimed to promote the early identification of wider-team strengths as well as active management of emergent issues that would otherwise impede patient recruitment, and to maximise funding and human resources. Methods: A descriptive study was conducted with a convenience sample of team members who represented different cultures in the study. Qualitative data were elicited from a ‘know and tell’ matrix. Through an iterative process, themes were generated that encapsulated what team members needed to know from and tell to their colleagues concerning the study. Results: Factors that impacted participation in the study included clinician workload, the level of motivation/ commitment/confidence of clinicians to recruit patients, clinician-patient engagement, perception and expectations of study involvement, inter-cultural communication, and clinician training and support. The findings of this multidisciplinary consultation informed a composite model of knowledge exchange and the development of educational briefing/ orientation modules that make explicit team members’ roles and responsibilities to foster group member participation and enhance patient recruitment. Conclusions: It is incumbent upon multidisciplinary team members of large-scale studies to adopt a similar ‘knowledge exchange’ strategy early in the planning and design stage. Adoption of such a strategy has the potential to mitigate risk of delay in project timelines, improve project outcomes, and ensure the efficient use of research funding, particularly in newly established research teams within clinical settings and with members newer to formal research collaborations. Keywords: cultural humility; deliberate self-harm; engagement; participant recruitment; participatory research; randomized controlled tria

Controls on Streamflow Densities in Semiarid Rocky Mountain Catchments

Developing accurate stream maps requires both an improved understanding of the drivers of streamflow spatial patterns and field verification. This study examined streamflow locations in three semiarid catchments across an elevation gradient in the Colorado Front Range, USA. The locations of surface flow throughout each channel network were mapped in the field and used to compute active drainage densities. Field surveys of active flow were compared to National Hydrography Dataset High Resolution (NHD HR) flowlines, digital topographic data, and geologic maps. The length of active flow declined with stream discharge in each of the catchments, with the greatest decline in the driest catchment. Of the tributaries that did not dry completely, 60% had stable flow heads and the remaining tributaries had flow heads that moved downstream with drying. The flow heads were initiated at mean contributing areas of 0.1 km2 at the lowest elevation catchment and 0.5 km2 at the highest elevation catchment, leading to active drainage densities that declined with elevation and snow persistence. The field mapped drainage densities were less than half the drainage densities that were represented using NHD HR. Geologic structures influenced the flow locations, with multiple flow heads initiated along faults and some tributaries following either fault lines or lithologic contacts.</p

Psychometric testing of the British‐English perceived workplace support scale, work accommodations, benefits, policies and practices scale, and work transitions index in four rheumatic and musculoskeletal conditions

Objective The aims were to validate linguistically British-English versions of the Perceived Workplace Support Scale (PWSS), Work Accommodations, Benefits, Policies and Practices Scale (WABPPS), and Work Transitions Index (WTI) in rheumatoid arthritis (RA), axial spondyloarthritis (axSpA), osteoarthritis (OA) and fibromyalgia (FM). Methods The three scales were adapted into British-English and reviewed by an expert panel prior to cognitive debriefing interviews. Participants completed postal questionnaires. Construct validity for the PWSS was assessed using Rasch analysis. Concurrent validity included testing between the three scales and work, job strain and work-life balance scales. Two weeks later, participants were mailed a second questionnaire to measure test-retest reliability. Results The questionnaire was completed by 831 employed participants: 68% women, 53.50 (SD 8.9) years of age, with condition duration 7.70 (SD 8.00) years. The PWSS satisfied Rasch model requirements. Concurrent validity was mostly as hypothesised, that is, weak to moderate negative correlations for the PWSS (rs = 0.07 to −0.61), and weak to moderate positive correlations for the WABPPS and WTI (rs = 0.20–0.52). Some correlations were stronger, mostly in axSpA. Internal consistency (Cronbach's alpha) for all three scales was consistent with group use in all conditions. Test-retest reliability was generally excellent, with intraclass coefficients (2,1) of 0.80–0.93 for the three scales in the four conditions. Discussion Reliable, valid versions of the British-English PWSS, WABPPS, and WTI are now available for use in research, organisational level studies and vocational rehabilitation

Genome-wide association study of primary open-angle glaucoma in continental and admixed African populations.

Primary open angle glaucoma (POAG) is a complex disease with a major genetic contribution. Its prevalence varies greatly among ethnic groups, and is up to five times more frequent in black African populations compared to Europeans. So far, worldwide efforts to elucidate the genetic complexity of POAG in African populations has been limited. We conducted a genome-wide association study in 1113 POAG cases and 1826 controls from Tanzanian, South African and African American study samples. Apart from confirming evidence of association at TXNRD2 (rs16984299; OR[T] 1.20; P = 0.003), we found that a genetic risk score combining the effects of the 15 previously reported POAG loci was significantly associated with POAG in our samples (OR 1.56; 95% CI 1.26-1.93; P = 4.79 × 10-5). By genome-wide association testing we identified a novel candidate locus, rs141186647, harboring EXOC4 (OR[A] 0.48; P = 3.75 × 10-8), a gene transcribing a component of the exocyst complex involved in vesicle transport. The low frequency and high degree of genetic heterogeneity at this region hampered validation of this finding in predominantly West-African replication sets. Our results suggest that established genetic risk factors play a role in African POAG, however, they do not explain the higher disease load. The high heterogeneity within Africans remains a challenge to identify the genetic commonalities for POAG in this ethnicity, and demands studies of extremely large size