bluuebunny/crossref_metadata_2025_split huggingface dataset:
Impact and burden of acid sphingomyelinase deficiency from a patient and caregiver perspective
Authors: Pokrzywinski Robin , Hareendran Asha , Nalysnyk Luba , Cowie Sandy , Crowe Joslyn , Hopkin Justin , Joshi Dhaivat , Pulikottil-Jacob Ruth 
Published: October 2021

AbstractAcid sphingomyelinase deficiency (ASMD), historically known as Niemann–Pick disease (NPD) types A, A/B, and B, is a rare, progressive, potentially fatal lysosomal storage disease with a spectrum of phenotypes. Little is known about how ASMD symptoms affect the lives of patients and their caregivers. In a cross-sectional qualitative study conducted in the US and UK, and in collaboration with the National Niemann–Pick Disease Foundation (US) and Niemann–Pick UK, we investigated the symptom experience of patients with ASMD types B and A/B and explored how the disease impacts their and their caregivers’ lives. The study included 17 adult patients (mean age 38.7 years, 12 female), three caregivers of adults with ASMD, 12 pediatric/adolescent patients with ASMD (mean age 10.5 years, six female), and 12 caregivers of pediatric/adolescent patients with ASMD. The most commonly reported disease manifestations were respiratory (n = 26, 89.7%), abdominal (n = 25, 86.2%), and musculoskeletal symptoms (n = 23, 79.3%); excessive bleeding or bruising (n = 20, 69%); fatigue (n = 20, 69%); gastrointestinal symptoms (n = 18, 62.1%); and headache (n = 15, 51.7%). ASMD was reported to negatively impact patients’ physical function (n = 23, 79.3%), self-esteem (n = 18, 62.1%), emotions (n = 16, 55.2%), social function and relationships (n = 16, 55.2%), and personal care (n = 9, 31%). Providing care for individuals with ASMD negatively affected caregivers’ emotional well-being (n = 12, 80%), social function (n = 4, 26.7%), relationships (n = 6, 40%), and financial security (n = 7, 46.7%). The physical toll of providing care, the need for lifestyle changes, and the responsibility for making medical decisions added to the burden for caregivers. Alternatively, some caregivers noted that caring for a loved one enhanced their spirituality, providing them with a different outlook on life and a deeper personal resolve. This study showed that ASMD is a substantial burden for patients and caregivers, with long-term physical, emotional, social, and financial impacts. The study confirmed commonly known manifestations of ASMD, especially respiratory problems, but also identified less recognized ones, such as dermatological complications. The data collected and insight gained from this study should enhance clinical care, help evaluate new treatments, and inform health care decision making for patients with ASMD.
Language Sample Analysis in Clinical Practice: Speech-Language Pathologists' Barriers, Facilitators, and Needs
Authors: Klatte Inge S. , van Heugten Vera , Zwitserlood Rob , Gerrits Ellen 
Published: October 2021

Purpose:
Most speech-language pathologists (SLPs) working with children with developmental language disorder (DLD) do not perform language sample analysis (LSA) on a regular basis, although they do regard LSA as highly informative for goal setting and evaluating grammatical therapy. The primary aim of this study was to identify facilitators, barriers, and needs related to performing LSA by Dutch SLPs working with children with DLD. The secondary aim was to investigate whether a training would change the actual performance of LSA.

Method:
A focus group with 11 SLPs working in Dutch speech-language pathology practices was conducted. Barriers, facilitators, and needs were identified using thematic analysis and categorized using the theoretical domain framework. To address the barriers, a training was developed using software program CLAN. Changes in barriers and use of LSA were evaluated with a survey sent to participants before, directly after, and 3 months posttraining.

Results:
The barriers reported in the focus group were SLPs' lack of knowledge and skills, time investment, negative beliefs about their capabilities, differences in beliefs about their professional role, and no reimbursement from health insurance companies. Posttraining survey results revealed that LSA was not performed more often in daily practice. Using CLAN was not the solution according to participating SLPs. Time investment remained a huge barrier.

Conclusions:
A training in performing LSA did not resolve the time investment barrier experienced by SLPs. User-friendly software, developed in codesign with SLPs might provide a solution. For the short-term, shorter samples, preferably from narrative tasks, should be considered.
Youth analysis of near-infrared spectra of young low-mass stars and brown dwarfs
Authors: Almendros-Abad V. , Mužić K. , Moitinho A. , Krone-Martins A. , Kubiak K. 
Published: October 2021

Context.Studies of the low-mass population statistics in young clusters are the foundation for our understanding of the formation of low-mass stars and brown dwarfs. Robust low-mass populations can be obtained through near-infrared spectroscopy, which provides confirmation of the cool and young nature of member candidates. However, the spectroscopic analysis of these objects is often not performed in a uniform manner, and the assessment of youth generally relies on the visual inspection of youth features whose behavior is not well understood.Aims.We aim at building a method that efficiently identifies young low-mass stars and brown dwarfs from low-resolution near-infrared spectra, by studying gravity-sensitive features and their evolution with age.Methods.We have built a data set composed of all publicly available (∼2800) near-infrared spectra of dwarfs with spectral types between M0 and L3. First, we investigate methods for the derivation of the spectral type and extinction via comparison to spectral templates and various spectral indices. Then, we examine gravity-sensitive spectral indices and apply machine learning methods in order to efficiently separate young (≲10 Myr) objects from the field.Results.Using a set of six spectral indices for spectral typing, including two newly defined ones (TLI-Jand TLI-K), we are able to achieve a precision below one spectral subtype across the entire spectral type range. We define a new gravity-sensitive spectral index (TLI-g) that consistently separates young objects from field objects; it shows a performance superior to other indices from the literature. Even better separation between the two classes can be achieved through machine learning methods that use the entire near-infrared spectra as an input. Moreover, we show that theHandKbands alone are sufficient for this purpose. Finally, we evaluate the relative importance of different spectral regions for gravity classification as returned by the machine learning models. We find that theH-band broadband shape is the most relevant feature, followed by the FeH absorption bands at 1.2 μm and 1.24 μm and the KI doublet at 1.24 μm.
Observed tidal evolution of Kleopatra’s outer satellite
Authors: Brož M. , Ďurech J. , Carry B. , Vachier F. , Marchis F. , Hanuš J. , Jorda L. , Vernazza P. , Vokrouhlický D. , Walterová M. , Behrend R. 
Published: October 2021

Aims. The orbit of the outer satellite Alexhelios of (216) Kleopatra is already constrained by adaptive-optics astrometry obtained with the VLT/SPHERE instrument. However, there is also a preceding occultation event in 1980 attributed to this satellite. Here, we try to link all observations, spanning 1980–2018, because the nominal orbit exhibits an unexplained shift by + 60° in the true longitude.
Methods. Using both a periodogram analysis and an ℓ = 10 multipole model suitable for the motion of mutually interacting moons about the irregular body, we confirmed that it is not possible to adjust the respective osculating period P2. Instead, we were forced to use a model with tidal dissipation (and increasing orbital periods) to explain the shift. We also analysed light curves spanning 1977–2021, and searched for the expected spin deceleration of Kleopatra.
Results. According to our best-fit model, the observed period rate is Ṗ2 = (1.8 ± 0.1) × 10−8 d d−1 and the corresponding time-lag Δt2 = 42 s of tides, for the assumed value of the Love number k2 = 0.3. This is the first detection of tidal evolution for moons orbiting 100 km asteroids. The corresponding dissipation factor Q is comparable with that of other terrestrial bodies, albeit at a higher loading frequency 2|ω − n|. We also predict a secular evolution of the inner moon, Ṗ1 = 5.0 × 10−8, as well as a spin deceleration of Kleopatra, Ṗ0 = 1.9 × 10−12. In alternative models, with moons captured in the 3:2 mean-motion resonance or more massive moons, the respective values of Δt2 are a factor of between two and three lower. Future astrometric observations using direct imaging or occultations should allow us to distinguish between these models, which is important for our understanding of the internal structure and mechanical properties of (216) Kleopatra.
Clinical Outcomes of Different Warfarin Self-Care Strategies: A Systematic Review and Network Meta-Analysis
Authors: Dhippayom Teerapon , Boonpattharatthiti Kansak , Thammathuros Treeluck , Dilokthornsakul Piyameth , Sakunrag Itsarawan , Devine Beth 
Published: October 2021

Abstract
Aim To compare the effects of different strategies for warfarin self-care.
Methods PubMed, EMBASE, CENTRAL, CINAHL, ProQuest Dissertations & Theses, and OpenGrey were searched from inception to August 2021. Randomized controlled trials (RCTs) of warfarin self-care, either patient self-testing (PST) or patient self-management (PSM), were included. Self-care approaches were classified based on the TIP framework (theme, intensity, provider): (1) PST ≥1/week via e-Health (PST/High/e-Health); (2) PST ≥1/week by health care practitioner (PST/High/HCP); (3) PST <1/week via e-Health (PST/Low/e-Health); (4) PSM ≥1/week by e-Health (PSM/High/e-Health); (5) PSM ≥1/week by patient (PSM/High/Pt); (6) PSM <1/week by patient (PSM/Low/Pt); and (7) PSM with flexible frequency by patient (PSM/Flex/Pt). Mean differences (MDs) and risk ratios (RRs) with 95% confidence interval (CI) were estimated using frequentist network meta-analyses with a random-effects model. The certainty of evidence was evaluated using CINeMA (Confidence in Network Meta-Analysis).
Results Sixteen RCTs involving 5,895 participants were included. When compared with usual care, time in therapeutic range was higher in PSM/High/Pt and PST/High/e-Health with MD [95% CI] of 7.67% [0.26–15.08] and 5.65% [0.04–11.26], respectively. The certainty of evidence was rated as moderate for these findings. The risk of thromboembolic events was lower in the PSM/Flex/Pt group when compared with PST/High/e-Health (RR: 0.39 [0.20–0.77]) and usual care (RR: 0.38 [0.17–0.88]) with low and very low level of evidence, respectively. There was no significant difference in the proportion of international normalized ratio (INR) values in range, major bleeding, and all-cause mortality among different self-care features.
Conclusion Patient self-care (either PST or PSM) by measuring INR values at least once weekly is more effective in controlling the INR level.
Respiratory and Gastrointestinal Management of an Infant with a Birth Weight of 258 Grams
Authors: Itoshima Ryo , Oda Arata , Ogawa Ryo , Yanagisawa Toshimitsu , Hiroma Takehiko , Nakamura Tomohiko 
Published: October 2021

AbstractToday, more infants weighing less than or equal to 300 g are born, and they survive because of the improvements in neonatal care and treatment. However, their detailed clinical course and neonatal intensive care unit management remain unknown due to their low survival rate and dearth of reports. A male infant was born at 24 weeks and 5 days of gestation and weighed 258 g. The infant received 72 days of invasive and 92 days of noninvasive respiratory support, including high-frequency oscillatory ventilation with volume guarantee and noninvasive neurally adjusted ventilatory assist. Meconium-related ileus was safely treated using diatrizoate. Although the infant was diagnosed with severe bronchopulmonary dysplasia and retinopathy of prematurity requiring laser photocoagulation, he had no other severe complications. He was discharged 201 days postdelivery (3 months of corrected age) with a weight of 3.396 kg. Although managing infants weighing less than or equal to 300 g is difficult, our experience shows that it is possible by combining traditional and modern management methods. The management of such infants requires an understanding of the expected difficulties and adaptation of existing methods to their management. The management techniques described here should help improve their survival and long-term prognosis.
Push-Out Bond Strength of Composite Polymerization Methods with Universal Adhesive to Coronal Dentin
Authors: Moosavi Horieh , Rezaei Fatemeh , Fazli Mohammad , Rakhshan Farzaneh 
Published: October 2021

Abstract
Objective This in vitro study was aimed to determine the effect of composite polymerization methods with universal adhesive on push-out bond strength in coronal dentin.
Materials and Methods Using 48 healthy premolar teeth, the almost conical access cavities were excised to the canal entry. Cavity preparations were treated with a universal adhesive in the self-etch mode. Teeth were randomly divided into four groups (n = 12). It was used to restore the cavities with a bulk-fill composite; Tetric N-Ceram, a conventional composite; Filtek Z250, a dual-cure composite; Rebilda DC VOCO, and chemical cure composite; Master-Dent. After applying 10,000 thermal cycles, 1-mm incisions were made in coronal dentin, and slices were placed in a UTM machine in a special jig and tested for push-out bond strength at a crosshead speed of 0.5 mm/min. Data were analyzed using one-way analysis of variance and Games–Howell tests (p < 0.05).
Results The highest mean bond strength was of the conventional composite (18.36 ± 5.63) and the lowest mean of bond strength was for the dual-cure composite (5.10 ± 2.74). There was a significant difference among the means of bond strength for various composite resins curing (p < 0.001).
Conclusion The bulk-fill and conventional light-cured composites had higher bond strength than self- and dual-cured composite resins.
Amending soils of different pH to decrease phosphorus losses
Authors: Lizarralde C. A. , McDowell R. W. , Condron L. M. , Brown J. 
Published: October 2021

Context Soils irrigated with wastewater are generally phosphorus (P)-enriched. P losses from these soils may impair surface water quality. However, wastewater applications also alter soil pH and P availability. Aims We investigated if amending soils with aluminium (Al), iron (Fe) or calcium (Ca) sorbents could decrease the potential for P losses despite altering soil pH and potentially increasing soil P availability. Methods Seven soils (pH 5.3–6.9) were incubated with lime, gypsum, hydrotalcite, alum sulfate, ferric sulfate, and ferric chloride at rates of 0:1, 0.25:1, 0.5:1 and 1:1 molar ratios of Al/Fe to P, and 0:1, 0.5:1, 1:1 and 5:3 for Ca to P, respectively. After 21 days pH and water extractable P (WEP) were measured. Key results In most cases the application of Al, Fe and Ca amendments decreased WEP in proportion to the rates applied. However, poor performance was noted when amendments were mismatched to soils altering their pH into the range where high soil P availability was expected. Of the amendments used, alum and iron sulfate were the most cost-efficient. However, even when optimised and applied to critical source areas the estimated cost-effectiveness of these amendments is still poor and may only be effective in the short term. Conclusions and implications We therefore recommend that other strategies such as inversion tillage bringing low P topsoil to the surface (and decreasing the potential for P loss by surface runoff) together with changes in the farm system to extract more P from the topsoil are the only strategies that will decrease the potential for P loss cost-effectively and in the long-term.
Experimental observation of the geostrophic turbulence regime of rapidly rotating convection
Authors: Bouillaut Vincent , Miquel Benjamin , Julien Keith , Aumaître Sébastien , Gallet Basile 
Published: October 2021

Significance
Turbulent convection is the main process through which nature moves fluids around, be it in deep planetary and stellar interiors or in the external fluid layers of planets and their satellites. Laboratory studies aim at reproducing the resulting fully turbulent flows, with the goal of determining the effective transport coefficients to be input into coarse geophysical or astrophysical models. Crucial to these applications is planetary or stellar rotation, which competes with convective processes to set the emergent transport properties. Building on a recent experimental approach that bypasses the limitations of boundary-forced convective flows, we report laboratory measurements in quantitative agreement with the fully turbulent regime of rotating convection.
Online headline testing at a Belgian broadsheet
Authors: Vandendaele Astrid , Declercq Jana , Jacobs Geert , Verkest Sofie 
Published: October 2021

Abstract
In this chapter, we investigate the impact of recent
audience-monitoring tools on the (online) newspaper sub-editors’ task of
crafting headlines. We zoom in on how metrics have become part of the
newsmaking process and are now intrinsic to a larger foundation of more
collaborative, participatory and engaging practices. Drawing on digital data
and fieldwork, we analyse the back and forth between the sub-editors’
journalistic gut feeling, their awareness of ‘selling’ their brand ‘in the
right way’, and the need to gain clicks. Relying on a linguistic
ethnographic perspective (NT&T
2011), we address how sub-editors reflect on their changing
professional routines. By investigating how the sub-editors’ aim to position
themselves in tandem with their algorithmic tools is foundational to news
media today, we shed new light on how the use of audience engagement metrics
intertwines with long-standing journalistic practices and contribute to
global debates on the politics of technology and online participation.
Journalism now
Authors: Cotter Colleen , Drummond William J. 
Published: October 2021

Abstract
The social dimension behind the (re-)production of news
genre forms is examined in news reporting examples that present different
discourse outcomes in the “postfoundational” social world for whom the
prestige of news craft remains key (Cotter 2010). Stories in “legacy” journalism (New York
Times) are compared with the San Quentin News,
the oldest prison newspaper in the US (Drummond 2020). The SQN, while socially
marginal, reflects central values of journalism in its story forms and
demonstrates the direct link that media have with their audience. The NYT,
while socially central, is itself becoming marginalized in the broader media
context as traditional news stories assume less importance in everyday
meaning-making. Together, they show how foundational discourse parameters
shift or are reconfigured.
Epilogue
Authors: Macgilchrist Felicitas , Declercq Jana , Vandendaele Astrid , Jacobs Geert 
Published: October 2021

Abstract
In this epilogue, we look back at the contributions to
this volume which have shown how some newsmakers embrace the idea of collaborating
while others are more cautious in reaching out. There seems to be, however,
simply no avoiding participation. We explore whether this means giving up,
or at least redistributing, control. In doing so, we also point to a lacuna
in this volume, as it is invariably on journalists and other traditional
newsmakers whom we focus, rather than those who fall outside traditional
professional categories. We examine how stable the relationships in
collaborative newsmaking really are and, zooming in on the ambivalent notion
of collusion, how the contemporary design of newsmaking both enables
positive participation and enforces unwanted forms of engagement. We
conclude by reflecting on how participation, engagement and collaboration
are impacting other fields of society. The chapter points to the need for critical
reflection on the limits of participation and to new routes
for further research.
Shared understandings of the human–nature relationship in
encounters with small wildlife
Authors: Rauniomaa Mirka , Keisanen Tiina , Siitonen Pauliina 
Published: October 2021

Abstract
Drawing on video data and ethnomethodological
conversation analysis, the study focuses on sequences of human
action and interaction in which participants orient to small
wildlife within their nature-related activities outdoors. The
participants are family members, friends or participants on
organized outings, and they engage in activities such as trekking,
foraging and fishing. The study examines moments when small wildlife
become the focus of the participants’ talk and other action and when
the relationship between human beings and the natural world is thus
constructed in situ. The study considers how participants in such
moments display, pursue and achieve shared understandings about what
the appropriate ways of treating other living beings and, more
generally, conducting oneself in nature are.
Extending sequences of other-initiated repair in Finnish
conversation
Authors: Haakana Markku , Kurhila Salla , Lilja Niina , Savijärvi Marjo 
Published: October 2021

Abstract
This paper explores other-initiated repair, or more
specifically, extended repair sequences. In extended cases, the
repair turn does not immediately resolve the trouble, and the
speaker needs to produce a new repair initiation.
Drawing on a collection of 458 other-initiations of
repair in naturally occurring everyday interaction in Finnish, we
show how the distribution of the outcomes of different types of
initiations clearly differs. Typically, candidate understandings and
open class repair initiations do not lead to extended sequences,
whereas repeats (with question words) are more often followed by a
second repair initiation. The type of trouble, as well as the
typological specificity of different initiations, explains the
outcomes of the repair sequences.
Achieving the intersubjectivity of sensorial practices
Authors: Mondada Lorenza 
Published: October 2021

Abstract
Intersubjectivity is a crucial issue not only for how
participants in social interaction communicate and coordinate shared
projects, but also for how they engage in sensing the material world
around them while they are jointly acting in that world. This paper
offers an ethnomethodological and conversation analytic study of
sensoriality that provides for a multimodal interactional analysis
of sensory practices. On the basis of a video-recorded beer tasting
session, I show how, far from being limited to individual and
neuro-physiological processes, situated activities of sensing are a
collective accomplishment here and now, emerging within joint
activities of searching, finding, and sharing relevant features of
taste, building agreements, and overcoming divergent views.
Movement synchrony as a topic of empirical social interaction
research
Authors: Stevanovic Melisa , Himberg Tommi 
Published: October 2021

Abstract
In this chapter, we consider movement synchrony from two
different perspectives. On the one hand, we report a small-scale
empirical study to test the hypothesis that movement synchrony is a
sequential phenomenon, which serves as a demonstration of how
conversation analytically informed research on participants’
unconscious tendencies to synchronize their body movements could
proceed in practice. On the other hand, we consider movement
synchrony through three closely related, yet essentially different,
conceptual lenses: conditional relevance, dialogic resonance, and
affordance. We suggest that a specific combination of the insights
provided by these three conceptual tools would make conversation
analytically informed study of movement synchrony both possible and
fruitful.