Impact of Cystic Fibrosis on Unaffected Siblings: A Systematic Review

Objective To conduct a systematic review of the evidence to determine the impact of cystic fibrosis (CF) on unaffected siblings. Study design We searched MEDLINE (Ovid interface, from 1946); EMBASE (Ovid interface, from 1946); CINAHL (EBSCO interface); Academic Search Complete (EBSCO interface); Psych Info (EBSCO interface); ProQuest Theses' and Dissertation's (ProQuest); British Index of Nursing (ProQuest); Web of Science (ISI, Web of Knowledge portal); PubMed (PubMed NCBI); BASE (Bielefeld Academic Research Engine); Scopus; EThOS (e-theses online service); Open Grey; and Cochrane Library. Contents pages of the Journal of Cystic Fibrosis, June 2002-April 2017 were hand searched to identify further eligible studies. Reference lists of eligible articles and relevant review papers were screened. Inclusion criteria were full studies published after 1989 in English focusing on the impact of cystic fibrosis on unaffected siblings. Results In total, 13 papers, 4 PhD theses and 1 MSc thesis were included in the review. Four themes were identified; family functioning, psychosocial impact, knowledge of CF, and condition-specific differences. Conclusions Most studies are old and may not accurately represent the impact of CF on unaffected siblings following changes to health care provision including newborn bloodspot screening and the advent of CF transmembrane regulator modulator therapies. Further work is needed directly with siblings rather than using mothers as proxies to determine effect of age, sex, and disease trajectory on unaffected siblings' experiences

The historical dependency of organic carbon burial efficiency

Many studies have viewed lakes as quasi-static systems with regard to the rate of organic carbon (OC) burial, assuming that the dominant control on BE is sediment mineralization. However, in systems undergoing eutrophication or oligotrophication (i.e., altered nutrient loading), or climatic forcing, the changes in primary production will vary on both longer (> 10 yr) and shorter (seasonal) timescales, influencing the rate of OC accumulation and subsequent permanent burial. Here, we consider the extent to which permanent OC burial reflects changing production in a deep monomictic lake (Rostherne Mere, UK) that has been culturally eutrophied (present TP>200 μg L-1), but has undergone recent reductions in nutrient loading. We compare multi-year dynamics of OC fluxes using sediment traps to longer-term burial rates estimated from two 210Pb-dated sediment cores. The recent sediment record demonstrates that most of the autochthonous OC is preserved (∼95% of OC captured in the deep trap and 86% of the NEP in the contemporary system), contrary to widely held assumptions that this more labile, algal-dominated OC component is not well preserved in lake sediments. A revised method for calculating BE for lakes which have undergone changes in primary productivity in recent decades is developed, which reduces some of problems inherent in existing approaches using historical sediment records averaged over the last 25-150 yr. We suggest that an appreciation of lakes in all biomes as ecosystems responding dynamically to recent human impact and climate change (for example) can improve up-scaled regional and global estimates of lake OC burial

Audience experience : measuring quality in the performing arts

Traditional measures of quality in the performing arts include critical reviews, awards, attendance data, the reputation of the director, company or lead performers, and attributions of success such as festival participation or sponsorship and grants. However, the recent literature on audience values, quest for authenticity and the personal experience suggests the need for empirical research into the capacity of the audience experience as an appropriate and important measure of quality in the performing arts. The authors use primary research with performing arts audiences to explore notions of quality, audience risk and audience experience to redefine the quality-measurement paradigm.<br /

Understanding the transfer of contemporary temperature signals into lake sediments via paired oxygen isotope ratios in carbonates and diatom silica: problems and potential

Although the oxygen isotope composition (δ18O) of calcite (δ18Ocalcite) and, to a lesser extent, diatom silica (δ18Odiatom) are widely used tracers of past hydroclimates (especially temperature and surface water hydrology), the degree to which these two hosts simultaneously acquire their isotope signals in modern lacustrine environments, or how these are altered during initial sedimentation, is poorly understood. Here, we present a unique dataset from a natural limnological laboratory to explore these issues. This study compares oxygen and hydrogen isotope data (δ18O, δ2H) of contemporary lake water samples at ~2-weekly intervals over a 2-year period (2010–12) with matching collections of diatoms (δ18Odiatom) and calcite (δ18Ocalcite) from sediment traps (at 10 m and 25 m) at Rostherne Mere (maximum depth 30 m), a well-monitored, eutrophic, seasonally stratified monomictic lake in the UK. The epilimnion shows a seasonal pattern of rising temperature and summer evaporative enrichment in 18O, and while there is a temperature imprint in both δ18Odiatom and δ18Ocalcite, there is significant inter-annual variability in both of these signals. The interpretation of δ18Odiatom and δ18Ocalcite values is complicated due to in-lake processes (e.g. non-equilibrium calcite precipitation, especially in spring, leading to significant 18Ocalcite depletion), and for δ18Odiatom, by post-mortem, depositional and possibly dissolution or diagenetic effects. For 2010 and 2011 respectively, there is a strong temperature dependence of δ18Ocalcite and δ18Odiatom in fresh trap material, with the fractionation slope for δ18Odiatom of ca. −0.2‰/°C, in agreement with several other studies. The δ18Odiatom data indicate the initiation of rapid post-mortem secondary alteration of fresh diatom silica (within ~6 months), with some trap material undergoing partial maturation in situ. Diatom δ18O of the trap material is also influenced by resuspension of diatom frustules from surface sediments (notably in summer 2011), with the net effect seen as an enrichment of deep-trap 18Odiatom by about +0.7‰ relative to shallow-trap values. Contact with anoxic water and anaerobic bacteria are potentially key to initiating this silica maturation process, as deep-trap samples that were removed prior to anoxia developing do not show enrichment. Dissolution (perhaps enhanced by anaerobic bacterial communities) may also be responsible for changes to δ18Odiatom that lead to increasing, but potentially predictable, error in inferred temperatures using this proxy. High resolution, multi-year monitoring can shed light on the complex dynamics affecting δ18Odiatom and δ18Ocalcite and supports the careful use of sedimentary δ18Odiatom and δ18Ocalcite as containing valuable hydroclimatic signals especially at a multi-annual resolution, although there remain substantial challenges to developing a reliable geothermometer on paired δ18Odiatom and δ18Ocalcite. In particular, δ18Odiatom needs cautious interpretation where silica post-mortem secondary alteration is incomplete and diatom preservation is not perfect, and we recommend dissolution be routinely assessed on diatom samples used for isotopic analyses

Understanding value creation and word-of-mouth behaviour at cultural events

Cultural value is a highly contested concept, despite its undoubted importance to practitioners and policy makers. Reseach into cultural value has, meanwhile, tended to employ a unidimensional value framework. This has hamprered the understanding of behaviour related to the word-of-mouth (WOM) communication behaviour of cultural values. This paper presents a cultural value segmentation based on a multidimensional value framework, allowing a profile of WOM behaviour (both online and offline) of each segment to be developed. The segmentation has four distinct segments of cultural consumer, each with different combinations of cultural values and WOM communication preferences. In this way, the study challenges current understandings of value creation and transfer in cultural settings. By way of practical recommendations, the study favours the use of market segmentation based on multi-dimensional value ‘constellations’, which can not only achieve better audience development but also to encourage wider WOM communication of the values in question

Functional agro-biodiversity: an evaluation of current approaches and outcomes

The European Union’s ‘Green Deal’ proposes an ambitious roadmap towards climate neutrality by 2050 and the adoption of a circular economy. Functional AgroBiodiversity (FAB) measures, which balance food production with minimised impacts on nature, are a promising way to achieve this on farmland. Here, we undertake a rapid evidence assessment to highlight Functional Agro-Biodiversity (FAB) management measures which help to realise biodiversity, climate neutrality, efficiency in use of natural resources and the circular economy. We report evidence on the effectiveness of 10 common FAB measures employed in Europe following a resurgence of interest and increased availability of data on their impact. The review found that the outcomes of implementing FAB measures were largely positive, with a number of mixed effects. There are evidence gaps, e.g., the impact of FAB measures on yield, the magnitude and timescale of impacts, the effect of landscape context. We signpost the most relevant and well-documented FAB measures, providing a reference for land managers and practitioners to select FAB measures to achieve specific ecological and agricultural outcomes. It is also important to note that a combination of measures implemented in a strategic way can enhance the output success

On the edge of their seats: Comparing first impressions and regular attendance in arts audiences

This article reports the findings of a questionnaire and interview study with arts audiences in a UK city, and compares the experiences of arts attenders with those of an “audience exchange” group, in which participants were taken to unfamiliar arts events and then discussed their expectations, first impressions, and intentions for future arts engagement. The study considers how the established values and behaviours of regular audience members might be inhibiting or alienating to first-time listeners, and identifies continuums of engagement that draw on psychological frameworks of identity and belonging. Differences between the factors in audience satisfaction in cinema, theatre, and music are explored, and the effects of familiarity with one art form on understanding a first encounter with a new one highlight the range of perspectives that audience members bring to any given event. The implications of these findings for audience development strategies are considered, showing how research with audiences can be a developmental tool in itself, by encouraging reflective discussion of arts experiences amongst new attenders

Immersive event experience and attendee motivation: a quantitative analysis using sensory, localisation, and participatory factors

‘Immersive events' is a growing category within the range of event typologies that includes participatory theatre, interactive launch parties, ‘escape rooms’ and dress-up cinema. A conceptual model reflects three core elements of the immersive events: Interaction, Sensory experience, and Localisation. A targeted online survey obtained a sample of n = 201 participants who had attended an immersive event within the past year. The results reveal that novelty and entertainment are highly important to attendee motivation. Gender, marital status, age, and education affected attendance patterns. Attendees were drawn to the uniqueness and participatory aspects of the immersive event. Deterrents to attendance were cost and perceived value. Rapid developments in digital technology suggest even greater degrees of immersivity on the horizon. These findings offer a timely contribution to the better understanding of the immersiveness concept, and its influence on attendee motivation and experience

Deep hanging out in the arts: an anthropological approach to capturing cultural value

This article presents the findings of an Arts and Humanities Research Council (AHRC) funded project carried out from September 2013 to March 2014 by five researchers at the University of Leeds (UK), who paired off with five audience-participants and engaged in a process of “deep hanging out” (Geertz 1998) at events curated as part of Leeds’ annual LoveArts festival. As part of AHRC’s Cultural Value project, the overarching aim of the research was to produce a rich, polyvocal, evocative and complex account of cultural value by co-investigating arts engagement with audience-participants. Findings suggested that both the methods and purpose of knowing about cultural value impact significantly on any exploration of cultural experience. Fieldwork culminated in the apparent paradox that we know, and yet still don’t seem to know, the value and impact of the arts. Protracted discussions with the participants suggested that this paradox stemmed from a misplaced focus on knowledge; that instead of striving to understand and rationalize the value of the arts, we should instead aim to feel and experience it. During a process of deep hanging out, our participants revealed the limitations of language in capturing the value of the arts, yet confirmed perceptions of the arts as a vehicle for developing self-identity and -expression and for living a better life. These findings suggest that the Cultural Value debate needs to be reframed from what is currently an interminable epistemological obsession (that seeks to prove and evidence the value of culture) into a more complex phenomenological question, which asks how people experience the arts and culture and why people want to understand its value. This in turn implies a re-conceptualization of the relationships between artists or arts organisations and their publics, based on a more relational form of engagement and on a more anthropological approach to capturing and co-creating cultural value

Functional Agro-Biodiversity: An Evaluation of Current Approaches and Outcomes

The European Union’s ‘Green Deal’ proposes an ambitious roadmap towards climate neutrality by 2050 and the adoption of a circular economy. Functional AgroBiodiversity (FAB) measures, which balance food production with minimised impacts on nature, are a promising way to achieve this on farmland. Here, we undertake a rapid evidence assessment to highlight Functional Agro-Biodiversity (FAB) management measures which help to realise biodiversity, climate neutrality, efficiency in use of natural resources and the circular economy. We report evidence on the effectiveness of 10 common FAB measures employed in Europe following a resurgence of interest and increased availability of data on their impact. The review found that the outcomes of implementing FAB measures were largely positive, with a number of mixed effects. There are evidence gaps, e.g., the impact of FAB measures on yield, the magnitude and timescale of impacts, the effect of landscape context. We signpost the most relevant and well-documented FAB measures, providing a reference for land managers and practitioners to select FAB measures to achieve specific ecological and agricultural outcomes. It is also important to note that a combination of measures implemented in a strategic way can enhance the output success