‘It's a traumatic illness, traumatic to witness’:a qualitative study of the experiences of bereaved family caregivers of patients with cutaneous T‐cell lymphoma

BackgroundCutaneous T‐cell lymphomas (CTCL) are rare cancers which can be difficult to diagnose, are incurable and adversely affect quality of life, particularly in advanced disease. Families often provide care, but little is known about their experiences or needs while caring for their relative with advanced disease or in bereavement.ObjectivesTo explore the experiences of bereaved family caregivers of patients with CTCL.MethodsSingle semi‐structured qualitative interviews were conducted with bereaved family caregivers of patients with CTCL recruited via a supra‐regional CTCL clinic. Transcribed interviews were analysed thematically, focusing on advanced disease, the approach of death and bereavement.ResultsFifteen carers of eleven deceased patients participated. Experiences clustered under four themes1 Complexity of care and medical intervention2 Carer roles in advanced CTCL3 Person vs. organisation‐centred care in advanced CTCL4 Knowing and not knowing: reflections on dying, death and bereavementCaregivers often had vivid recollections of the challenges of caring for their relative with advanced CTCL and some took on quasi‐professional roles as a result. Advanced disease made high demands on both organisational flexibility and family resources. For many caregivers, seeing disease progression was a prolonged and profoundly traumatic experience. The extent to which they were prepared for their relative's death and supported in bereavement was highly variable.Subthemes within each theme provide more detail about caregiver experiences.ConclusionsFamily caregivers should be considered part of the wider healthcare team, acknowledging their multiple roles and the challenges they encounter in looking after their relative with CTCL as the disease progresses. Their experiences highlight the importance of organisational flexibility and of good communication between health care providers in advanced CTCL

Valence bond solid formalism for d-level one-way quantum computation

The d-level or qudit one-way quantum computer (d1WQC) is described using the valence bond solid formalism and the generalised Pauli group. This formalism provides a transparent means of deriving measurement patterns for the implementation of quantum gates in the computational model. We introduce a new universal set of qudit gates and use it to give a constructive proof of the universality of d1WQC. We characterise the set of gates that can be performed in one parallel time step in this model.Comment: 26 pages, 9 figures. Published in Journal of Physics A: Mathematical and Genera

Modern Scientific Visualization is more than Just Pretty Pictures

While the primary product of scientific visualization is images and movies, its primary objective is really scientific insight. Too often, the focus of visualization research is on the product, not the mission. This paper presents two case studies, both that appear in previous publications, that focus on using visualization technology to produce insight. The first applies"Query-Driven Visualization" concepts to laser wakefield simulation data to help identify and analyze the process of beam formation. The second uses topological analysis to provide a quantitative basis for (i) understanding the mixing process in hydrodynamic simulations, and (ii) performing comparative analysis of data from two different types of simulations that model hydrodynamic instability

IL-17 Receptor Signaling in Oral Epithelial Cells Is Critical for Protection against Oropharyngeal Candidiasis

Signaling through the IL-17 receptor (IL-17R) is required to prevent oropharyngeal candidiasis (OPC) in mice and humans. However, the IL-17-responsive cell type(s) that mediate protection are unknown. Using radiation chimeras we were able to rule out a requirement for IL-17RA in the hematopoietic compartment. We saw remarkable concordance of IL-17-controlled gene expression in C. albicans-infected human oral epithelial cells (OECs) and in tongue tissue from mice with OPC. To interrogate the role of the IL-17R in OECs, we generated mice with conditional deletion of IL-17RA in superficial oral and esophageal epithelial cells (Il17ra(ΔK13)). Following oral Candida infection, Il17ra(ΔK13) mice exhibited fungal loads and weight loss indistinguishable from Il17ra(−/−) mice. Susceptibility in Il17ra(ΔK13) mice correlated with expression of the antimicrobial peptide β-defensin 3 (BD3, Defb3). Consistently, Defb3(−/−) mice were susceptible to OPC. Thus, OECs dominantly control IL-17R-dependent responses to OPC through regulation of BD3expression

Application of High-performance Visual Analysis Methods to Laser Wakefield Particle Acceleration Data

Our work combines and extends techniques from high-performance scientific data management and visualization to enable scientific researchers to gain insight from extremely large, complex, time-varying laser wakefield particle accelerator simulation data. We extend histogram-based parallel coordinates for use in visual information display as well as an interface for guiding and performing data mining operations, which are based upon multi-dimensional and temporal thresholding and data subsetting operations. To achieve very high performance on parallel computing platforms, we leverage FastBit, a state-of-the-art index/query technology, to accelerate data mining and multi-dimensional histogram computation. We show how these techniques are used in practice by scientific researchers to identify, visualize and analyze a particle beam in a large, time-varying dataset

VACET: Proposed SciDAC2 Visualization and Analytics Center forEnabling Technologies

This paper accompanies a poster that is being presented atthe SciDAC 2006 meeting in Denver, CO. This project focuses on leveragingscientific visualization and analytics software technology as an enablingtechnology for increasing scientific productivity and insight. Advancesincomputational technology have resultedin an "information big bang,"which in turn has createda significant data understanding challenge. Thischallenge is widely acknowledged to be one of the primary bottlenecks incontemporary science. The vision for our Center is to respond directly tothat challenge by adapting, extending, creating when necessary anddeploying visualization and data understanding technologies for ourscience stakeholders. Using an organizational model as a Visualizationand Analytics Center for Enabling Technologies (VACET), we are wellpositioned to be responsive to the needs of a diverse set of scientificstakeholders in a coordinated fashion using a range of visualization,mathematics, statistics, computer and computational science and datamanagement technologies