Ethical and legal aspects of research involving older people with cognitive impairment: A survey of dementia researchers in Australia

© 2019 Elsevier Ltd People with dementia are under-represented in clinical research, in part due to the ethical and legal complexities of involving people in studies who may lack capacity to consent. Excluding this population from research limits the evidence to inform care. The attitudes and practices of researchers are key to the inclusion of people with dementia in research, however, there are few empirical studies on researchers' perspectives in this area. A cross-sectional study involved researchers in Australia who had experience in the ethical aspects of conducting dementia-related studies with human participants (n = 70). Data were collected via an online survey from November 2017 to January 2018. Most respondents (97%) agreed with the importance of including people at all stages of dementia in research, yet around three-quarters of respondents perceived ethical and legal rules and processes as unduly restrictive or time-consuming. Researchers reported variable practices in assessing prospective participants' capacity to consent to their studies. Various tools are used for this purpose, ranging from tools designed for research (eg, MacArthur Competence Assessment Tool for Clinical Research) to more general cognitive function screens (eg, Mini Mental State Exam). Few respondents (14%) routinely exclude people from studies who are unable to give their own consent, but instead seek permission from proxy decision-makers, such as legally appointed guardians or family carers. Respondents reported positive and negative outcomes of ethics review processes. Positive outcomes included strengthening the protections for participants with cognitive impairment while negative outcomes included delays and inconsistent decisions from different ethics committees. The findings suggest a need for improved strategies in the research context to assess and enhance the decision-making capacity of people with dementia to support appropriate opportunities for inclusion. Education for ethics committees, proxy decision-makers and other gatekeepers is also needed to reduce barriers to participation in research

Adaptation of a School-based Mental Health Literacy Curriculum: from Canadian to English Classrooms

Background: School-based mental health literacy (MHL) interventions are increasingly trialled outside of the country in which they were developed. However, there is a lack of published studies that qualitatively explore their cultural adaptation. This study investigated the reasons for adaptations made and suggested to a Canadian MHL curriculum (The Guide) within the English school context. // Method: Semi-structured interviews were conducted with 11 school staff responsible for the planning and/or implementation of The Guide across three schools in the South East of England, as part of the Education for Wellbeing (EfW) feasibility study. Transcripts were analysed using a hybrid, deductive-inductive thematic analysis. // Results: Adaptations made and suggested included dropping and emphasising content, and adapting language, examples and references. Most adaptations were proactive and related to The Guide's implementation methods, including developing more interactive and student-led approaches. Staff Capacity and Expertise, Timetabling, and Accessibility of Resources were identified as logistical reasons for adaptations. Philosophical reasons included Consistency of Messages, Student Characteristics, Reducing Stigma and Empowering Students, National and Local Context, and Appropriate Pedagogic Practices. // Conclusion: Overall, recommendations were for immediately implementable lesson plans informed by teachers' knowledge about best pedagogic practices in England. Adequate training, attended by both senior leadership and those implementing, was also emphasised. While ensuring that the core components are clear, MHL interventions should be developed with a necessary level of flexibility to accommodate contextual characteristics. Future research should ensure that adaptations are captured through process and implementation evaluations conducted alongside efficacy trials

Curvature condensation and bifurcation in an elastic shell

We study the formation and evolution of localized geometrical defects in an indented cylindrical elastic shell using a combination of experiment and numerical simulation. We find that as a symmetric localized indentation on a semi-cylindrical shell increases, there is a transition from a global mode of deformation to a localized one which leads to the condensation of curvature along a symmetric parabolic crease. This process introduces a soft mode in the system, converting a load-bearing structure into a hinged, kinematic mechanism. Further indentation leads to twinning wherein the parabolic crease bifurcates into two creases that move apart on either side of the line of symmetry. A qualitative theory captures the main features of the phenomena and leads to sharper questions about the nucleation of these defects.Comment: 4 pages, 5 figures, submitted to Physical Review Letter

Supersymmetric Gauge Theories in Twistor Space

We construct a twistor space action for N=4 super Yang-Mills theory and show that it is equivalent to its four dimensional spacetime counterpart at the level of perturbation theory. We compare our partition function to the original twistor-string proposal, showing that although our theory is closely related to string theory, it is free from conformal supergravity. We also provide twistor actions for gauge theories with N<4 supersymmetry, and show how matter multiplets may be coupled to the gauge sector.Comment: 23 pages, no figure

Neutron, electron and X-ray scattering investigation of Cr1-xVx near Quantum Criticality

The weakness of electron-electron correlations in the itinerant antiferromagnet Cr doped with V has long been considered the reason that neither new collective electronic states or even non Fermi liquid behaviour are observed when antiferromagnetism in Cr$_{1-x}$V$_{x}$ is suppressed to zero temperature. We present the results of neutron and electron diffraction measurements of several lightly doped single crystals of Cr$_{1-x}$V$_{x}$ in which the archtypal spin density wave instability is progressively suppressed as the V content increases, freeing the nesting-prone Fermi surface for a new striped charge instability that occurs at x$_{c}$=0.037. This novel nesting driven instability relieves the entropy accumulation associated with the suppression of the spin density wave and avoids the formation of a quantum critical point by stabilising a new type of charge order at temperatures in excess of 400 K. Restructuring of the Fermi surface near quantum critical points is a feature found in materials as diverse as heavy fermions, high temperature copper oxide superconductors and now even elemental metals such as Cr.Comment: 6 pages, 6 figures. Accepted to Physical Review

Properties of Ridges in Elastic Membranes

When a thin elastic sheet is confined to a region much smaller than its size the morphology of the resulting crumpled membrane is a network of straight ridges or folds that meet at sharp vertices. A virial theorem predicts the ratio of the total bending and stretching energies of a ridge. Small strains and curvatures persist far away from the ridge. We discuss several kinds of perturbations that distinguish a ridge in a crumpled sheet from an isolated ridge studied earlier (A. E. Lobkovsky, Phys. Rev. E. 53 3750 (1996)). Linear response as well as buckling properties are investigated. We find that quite generally, the energy of a ridge can change by no more than a finite fraction before it buckles.Comment: 13 pages, RevTeX, acknowledgement adde

Symmetry Reduction by Lifting for Maps

We study diffeomorphisms that have one-parameter families of continuous symmetries. For general maps, in contrast to the symplectic case, existence of a symmetry no longer implies existence of an invariant. Conversely, a map with an invariant need not have a symmetry. We show that when a symmetry flow has a global Poincar\'{e} section there are coordinates in which the map takes a reduced, skew-product form, and hence allows for reduction of dimensionality. We show that the reduction of a volume-preserving map again is volume preserving. Finally we sharpen the Noether theorem for symplectic maps. A number of illustrative examples are discussed and the method is compared with traditional reduction techniques.Comment: laTeX, 31 pages, 5 figure

‘Do know harm’: Examining the intersecting capabilities of young people from refugee backgrounds through community sport and leisure programmes

Copyright © The Author(s) 2023. Young people from refugee backgrounds have been repeatedly denied the ability to lead a life that they value. Community sport and leisure has been positioned as a tool to foster positive wellbeing experiences for these young people living in Western resettlement countries. Drawing on qualitative data from a Participatory Action Research project in London, England, we apply Nussbaum's Capabilities Approach to examine how the young people made sense of and negotiated their interconnecting capabilities through the sport and leisure programme. We examine three key interconnections between the capabilities of (a) life, bodily health and play; (b) affiliation and emotion and (c) bodily integrity and control over the environment. The findings are significant in ensuring sport and leisure provides opportunities for young people from refugee backgrounds to engage in positive wellbeing experiences and for enabling them and those supporting them to know and challenge harmful practices that may restrict capabilities.The author(s) received no financial support for the research, authorship, and/or publication of this article

Children and young people’s experiences of completing mental health and wellbeing measures for research: learning from two school-based pilot projects

BACKGROUND: In recent years there has been growing interest in child and adolescent mental health and wellbeing, alongside increasing emphasis on schools as a crucial site for research and intervention. This has coincided with an increased use of self-report mental health and wellbeing measures in research with this population, including in school-based research projects. We set out to explore the way that children and young people perceive and experience completing mental health and wellbeing measures, with a specific focus on completion in a school context, in order to inform future measure and research design. METHODS: We conducted semi-structured interviews and focus groups with 133 participants aged 8–16 years following their completion of mental health and wellbeing measures as part of school-based research programmes, using thematic analysis to identify patterns of experience. FINDINGS: We identified six themes: Reflecting on emotions during completion; the importance of anonymity; understanding what is going to happen; ease of responding to items; level of demand; and interacting with the measure format. CONCLUSIONS: Our findings offer greater insight into children and young people’s perceptions and experiences in reporting on their mental health and wellbeing. Such understanding can be used to support more ethical and robust data collection procedures in child and adolescent mental health research, both for data quality and ethical purposes. We offer several practical recommendations for researchers, including facilitating this in a school context