Emerging communities of child-healthcare practice in the management of long-term conditions such as chronic kidney disease: Qualitative study of parents' accounts

Background: Parents of children and young people with long-term conditions who need to deliver clinical care to their child at home with remote support from hospital-based professionals, often search the internet for care-giving information. However, there is little evidence that the information available online was developed and evaluated with parents or that it acknowledges the communities of practice that exist as parents and healthcare professionals share responsibility for condition management. Methods. The data reported here are part of a wider study that developed and tested a condition-specific, online parent information and support application with children and young people with chronic-kidney disease, parents and professionals. Semi-structured interviews were conducted with 19 fathers and 24 mothers who had recently tested the novel application. Data were analysed using Framework Analysis and the Communities of Practice concept. Results: Evolving communities of child-healthcare practice were identified comprising three components and several sub components: (1) Experiencing (parents making sense of clinical tasks) through Normalising care, Normalising illness, Acceptance & action, Gaining strength from the affected child and Building relationships to formalise a routine; (2) Doing (Parents executing tasks according to their individual skills) illustrated by Developing coping strategies, Importance of parents' efficacy of care and Fear of the child's health failing; and (3) Belonging/Becoming (Parents defining task and group members' worth and creating a personal identity within the community) consisting of Information sharing, Negotiation with health professionals and Achieving expertise in care. Parents also recalled factors affecting the development of their respective communities of healthcare practice; these included Service transition, Poor parent social life, Psycho-social affects, Family chronic illness, Difficulty in learning new procedures, Shielding and avoidance, and Language and cultural barriers. Health care professionals will benefit from using the communities of child-healthcare practice model when they support parents of children with chronic kidney disease. Conclusions: Understanding some of the factors that may influence the development of communities of child-healthcare practice will help professionals to tailor information and support for parents learning to manage their child's healthcare. Our results are potentially transferrable to professionals managing the care of children and young people with other long-term conditions. © 2014 Carolan et al.; licensee BioMed Central Ltd

Evidence for susceptibility genes to familial Wilms tumour in addition to WT1, FWT1 and FWT2

Three loci have been implicated in familial Wilms tumour: WT1 located on chromosome 11p13, FWT1 on 17q12-q21, and FWT2 on 19q13. Two out of 19 Wilms tumour families evaluated showed strong evidence against linkage at all three loci. Both of these families contained at least three cases of Wilms tumour indicating that they were highly likely to be due to genetic susceptibility and therefore that one or more additional familial Wilms tumour susceptibility genes remain to be found. © 2000 Cancer Research Campaig

The evolution of magnetic tower jets in the laboratory

The evolution of laboratory produced magnetic jets is followed numerically through three-dimensional, non-ideal magnetohydrodynamic simulations. The experiments are designed to study the interaction of a purely toroidal field with an extended plasma background medium. The system is observed to evolve into a structure consisting of an approximately cylindrical magnetic cavity with an embedded magnetically confined jet on its axis. The supersonic expansion produces a shell of swept-up shocked plasma which surrounds and partially confines the magnetic tower. Currents initially flow along the walls of the cavity and in the jet but the development of current-driven instabilities leads to the disruption of the jet and a re-arrangement of the field and currents. The top of the cavity breaks-up and a well collimated, radiatively cooled, 'clumpy' jet emerges from the system

Estimation of the solubility parameters of model plant surfaces and agrochemicals: a valuable tool for understanding plant surface interactions

Background Most aerial plant parts are covered with a hydrophobic lipid-rich cuticle, which is the interface between the plant organs and the surrounding environment. Plant surfaces may have a high degree of hydrophobicity because of the combined effects of surface chemistry and roughness. The physical and chemical complexity of the plant cuticle limits the development of models that explain its internal structure and interactions with surface-applied agrochemicals. In this article we introduce a thermodynamic method for estimating the solubilities of model plant surface constituents and relating them to the effects of agrochemicals. Results Following the van Krevelen and Hoftyzer method, we calculated the solubility parameters of three model plant species and eight compounds that differ in hydrophobicity and polarity. In addition, intact tissues were examined by scanning electron microscopy and the surface free energy, polarity, solubility parameter and work of adhesion of each were calculated from contact angle measurements of three liquids with different polarities. By comparing the affinities between plant surface constituents and agrochemicals derived from (a) theoretical calculations and (b) contact angle measurements we were able to distinguish the physical effect of surface roughness from the effect of the chemical nature of the epicuticular waxes. A solubility parameter model for plant surfaces is proposed on the basis of an increasing gradient from the cuticular surface towards the underlying cell wall. Conclusions The procedure enabled us to predict the interactions among agrochemicals, plant surfaces, and cuticular and cell wall components, and promises to be a useful tool for improving our understanding of biological surface interactions

Magnetic Tower Outflows from a Radial Wire Array Z-pinch

We present the first results of high energy density laboratory astrophysics experiments which explore the evolution of collimated outflows and jets driven by a toroidal magnetic field. The experiments are scalable to astrophysical flows in that critical dimensionless numbers such as the Mach number, the plasma beta and the magnetic Reynolds number are all in the astrophysically appropriate ranges. Our experiments use the MAGPIE pulsed power machine and allow us to explore the role of magnetic pressure in creating and collimating the outflow as well as showing the creation of a central jet within the broader outflow cavity. We show that currents flow along this jet and we observe its collimation to be enhanced by the additional hoop stresses associated with the generated toroidal field. Although at later times the jet column is observed to go unstable, the jet retains its collimation. We also present simulations of the magnetic jet evolution using our two-dimensional resistive magneto-hydrodynamic (MHD) laboratory code. We conclude with a discussion of the astrophysical relevance of the experiments and of the stability properties of the jet.Comment: Accepted by MNRAS. 17 pages without figures. Full version with figures can be found at http://www.pas.rochester.edu/~afrank/labastro/MF230rv.pd

"Did the trial kill the intervention?" experiences from the development, implementation and evaluation of a complex intervention

Background: The development, implementation and evaluation of any new health intervention is complex. This paper uses experiences from the design, implementation and evaluation of a rehabilitation programme to shed light on, and prompt discussion around, some of the complexities involved in such an undertaking. Methods: Semi-structured interviews were conducted with 15 trial participants and five members of staff at the conclusion of a trial evaluating a rehabilitation programme aimed at promoting recovery after stem cell transplantation. Results: This study identified a number of challenges relating to the development and evaluation of complex interventions. The difficulty of providing a standardised intervention that was acceptable to patients was highlighted in the participant interviews. Trial participants and some members of staff found the concept of equipoise and randomisation challenging and there was discord between the psychosocial nature of the intervention and the predominant bio-medical culture in which the research took place. Conclusions: A lack of scientific evidence as to the efficacy of an intervention does not preclude staff and patients holding strong views about the benefits of an intervention. The evaluation of complex interventions should, where possible, facilitate not restrict that complexity. Within the local environment where the trial is conducted, acquiescence from those in positions of authority is insufficient; commitment to the trial is required

The Discursive Denial of Racism by Finnish Populist Radical Right Politicians Accused of Anti-Muslim Hate-Speech

This chapter explores Finnish populist radical right politicians’ discursive denials of racism against Muslims following the 2015 European “refugee crisis”. The critical discursive psychological analysis of the politicians’ Facebook accounts identifies four ways in which racism was denied: first, through constructing the statements as mere displays of undisputable facts and common-sense; second, through personal narratives and ontological gerrymandering that acted as ‘proof’ of the politician’s non-racist disposition; third, through transferring the discussion from issues about race to concern matters of cultural threats; and, fourth, through reversing racism to the politicians’ political antagonists. The analyses show that in their discursive denial of racist hate-speech against Muslims, the Finnish politicians relied more on cultural arguments than welfare-protectionist ones. That is, the denials were primarily warranted through nostalgic references to Finnish national identity, people and values, and rhetorical promises that the hope of saving these rests on resisting the cultural threat posed by Islam.Peer reviewe

Interpreting outcome following foot surgery in people with rheumatoid arthritis

BACKGROUND: Foot surgery is common in RA but the current lack of understanding of how patients interpret outcomes inhibits evaluation of procedures in clinical and research settings. This study aimed to explore which factors are important to people with RA when they evaluate the outcome of foot and ankle surgery. METHODS AND RESULTS: Semi structured interviews with 11 RA participants who had mixed experiences of foot surgery were conducted and analysed using thematic analysis. Responses showed that while participants interpreted surgical outcome in respect to a multitude of factors, five major themes emerged: functional ability, participation, appearance of feet and footwear, surgeons' opinion, and pain. Participants interpreted levels of physical function in light of other aspects of their disease, reflecting on relative change from their preoperative state more than absolute levels of ability. Appearance was important to almost all participants: physical appearance, foot shape, and footwear were closely interlinked, yet participants saw these as distinct concepts and frequently entered into a defensive repertoire, feeling the need to justify that their perception of outcome was not about cosmesis. Surgeons' post-operative evaluation of the procedure was highly influential and made a lasting impression, irrespective of how the outcome compared to the participants' initial goals. Whilst pain was important to almost all participants, it had the greatest impact upon them when it interfered with their ability to undertake valued activities. CONCLUSIONS: People with RA interpret the outcome of foot surgery using multiple interrelated factors, particularly functional ability, appearance and surgeons' appraisal of the procedure. While pain was often noted, this appeared less important than anticipated. These factors can help clinicians in discussing surgical options in patients