Planning ahead with children with life-limiting conditions and their families : development, implementation and evaluation of ‘My Choices’

Background: The United Kingdom has led the world in the development of children’s palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children’s palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase. Methods: Drawing on contemporaneous research on producing evidence-based children’s health information, we collaborated with leading children’s not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation. Results: Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals. Conclusion: The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning

Bayesian modelling of clusters of galaxies from multi-frequency pointed Sunyaev--Zel'dovich observations

We present a Bayesian approach to modelling galaxy clusters using multi-frequency pointed observations from telescopes that exploit the Sunyaev--Zel'dovich effect. We use the recently developed MultiNest technique (Feroz, Hobson & Bridges, 2008) to explore the high-dimensional parameter spaces and also to calculate the Bayesian evidence. This permits robust parameter estimation as well as model comparison. Tests on simulated Arcminute Microkelvin Imager observations of a cluster, in the presence of primary CMB signal, radio point sources (detected as well as an unresolved background) and receiver noise, show that our algorithm is able to analyse jointly the data from six frequency channels, sample the posterior space of the model and calculate the Bayesian evidence very efficiently on a single processor. We also illustrate the robustness of our detection process by applying it to a field with radio sources and primordial CMB but no cluster, and show that indeed no cluster is identified. The extension of our methodology to the detection and modelling of multiple clusters in multi-frequency SZ survey data will be described in a future work.Comment: 12 pages, 7 figures, submitted to MNRA

Origin Gaps and the Eternal Sunshine of the Second-Order Pendulum

The rich experiences of an intentional, goal-oriented life emerge, in an unpredictable fashion, from the basic laws of physics. Here I argue that this unpredictability is no mirage: there are true gaps between life and non-life, mind and mindlessness, and even between functional societies and groups of Hobbesian individuals. These gaps, I suggest, emerge from the mathematics of self-reference, and the logical barriers to prediction that self-referring systems present. Still, a mathematical truth does not imply a physical one: the universe need not have made self-reference possible. It did, and the question then is how. In the second half of this essay, I show how a basic move in physics, known as renormalization, transforms the "forgetful" second-order equations of fundamental physics into a rich, self-referential world that makes possible the major transitions we care so much about. While the universe runs in assembly code, the coarse-grained version runs in LISP, and it is from that the world of aim and intention grows.Comment: FQXI Prize Essay 2017. 18 pages, including afterword on Ostrogradsky's Theorem and an exchange with John Bova, Dresden Craig, and Paul Livingsto

A maximum-entropy method for reconstructing the projected mass distribution of gravitational lenses

The maximum-entropy method is applied to the problem of reconstructing the projected mass density of a galaxy cluster using its gravitational lensing effects on background galaxies. We demonstrate the method by reconstructing the mass distribution in a model cluster using simulated shear and magnification data to which Gaussian noise is added. The mass distribution is reconstructed directly and the inversion is regularised using the entropic prior for this positive additive distribution. For realistic noise levels, we find that the method faithfully reproduces the main features of the cluster mass distribution not only within the observed field but also slightly beyond it. We estimate the uncertainties on the reconstruction by calculating an analytic approximation to the covariance matrix of the reconstruction values of each pixel. This result is compared with error estimates derived from Monte-Carlo simulations for different noise realisations and found to be in good agreement.Comment: Version accepted by MNRAS. New figure showing power spectrum and auto correlation function of the residual map; other minor changes. 10 pages including 9 figure