Pain following burn injuries can be severe and may persist after hospital discharge. The experience of pain is influenced by multiple biological and psychosocial factors. Post-discharge pain may be related to pain experienced during hospitalization as well as anxiety associated with these pain experiences. There are also protective factors; one notable example is optimism. However, the role of optimism in burn-related pain has not yet been investigated. This study aimed to describe the extent of pain measured over 14 consecutive days post-discharge and to examine its relationship with background pain, procedural pain, pain-related anxiety, and optimism. This multi-center longitudinal cohort study was conducted in five burns centres. The results showed that 50 % of the patients had a pain score ≥ 2 on a 0 – 10 scale after discharge, which on average decreased further over the next 14 days. However, a subgroup of patients maintained elevated pain levels. Patients with higher pain scores post-discharge were more likely to have experienced higher levels of background pain and procedural pain in-hospital and they scored lower on optimism. Pain-related anxiety did not independently contribute to pain post-discharge. The results indicate that patients with high pain scores during hospital admission may need specific attention regarding pain management when they leave the hospital. Furthermore, patients may benefit from optimism-inducing interventions in the hospital and thereafter.
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Pain following burn injuries can be severe and may persist after hospital discharge. The experience of pain is influenced by multiple biological and psychosocial factors. Post-discharge pain may be related to pain experienced during hospitalization as well as anxiety associated with these pain experiences. There are also protective factors; one notable example is optimism. However, the role of optimism in burn-related pain has not yet been investigated. This study aimed to describe the extent of pain measured over 14 consecutive days post-discharge and to examine its relationship with background pain, procedural pain, pain-related anxiety, and optimism. This multi-center longitudinal cohort study was conducted in five burns centres. The results showed that 50 % of the patients had a pain score ≥ 2 on a 0 – 10 scale after discharge, which on average decreased further over the next 14 days. However, a subgroup of patients maintained elevated pain levels. Patients with higher pain scores postdischarge were more likely to have experienced higher levels of background pain and procedural pain in-hospital and they scored lower on optimism. Pain-related anxiety did not independently contribute to pain postdischarge. The results indicate that patients with high pain scores during hospital admission may need specific attention regarding pain management when they leave the hospital. Furthermore, patients may benefit from optimism-inducing interventions in the hospital and thereafter.
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Purpose The purpose of this study is twofold. First, this study reflects on the development of professional capital through understanding collective cultural factors, namely, academic optimism and shared vision. Second, it aims at exploring teacher learning. Teacher learning resulting in changes to teacher knowledge, attitudes and practices is crucial for the necessary changes education is continually confronted with. This learning is too often studied as a result of individual traits or structural factors, such as motivation or time. The authors investigated how teacher learning is influenced by academic optimism and shared vision. Design/methodology/approach The authors administered an online web-based survey to 278 teachers in higher education, using the educational change to online learning due to the covid pandemic as a unique chance to study the role of collective cultural factors in teacher learning. Findings Results showed how teachers characterized their learning, academic optimism and shared vision during the educational change to online learning resulting from the covid pandemic. The authors found that teacher learning was greatly influenced by teachers' collective sense of efficacy, an aspect of their academic optimism. Teachers' strong belief in each other, that they as fellow professionals could handle the challenging changes that the covid pandemic required, strongly enhanced teacher learning during the covid pandemic. Teachers' feeling of a professional community helped teacher to make sense of, and push through, the undeniable chaos that was the covid pandemic. Originality/value Collective cultural factors are rarely studied in conjunction with educational change. Insights into how a collective culture of professionalism enhances or hinders teacher learning are important for theory, policy and practice as it helps understand how teacher teams can be supported to build their professional capital by learning from educational change.
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Huntington’s disease (HD) and various spinocerebellar ataxias (SCA) are autosomal dominantly inherited neurodegenerative disorders caused by a CAG repeat expansion in the disease-related gene1. The impact of HD and SCA on families and individuals is enormous and far reaching, as patients typically display first symptoms during midlife. HD is characterized by unwanted choreatic movements, behavioral and psychiatric disturbances and dementia. SCAs are mainly characterized by ataxia but also other symptoms including cognitive deficits, similarly affecting quality of life and leading to disability. These problems worsen as the disease progresses and affected individuals are no longer able to work, drive, or care for themselves. It places an enormous burden on their family and caregivers, and patients will require intensive nursing home care when disease progresses, and lifespan is reduced. Although the clinical and pathological phenotypes are distinct for each CAG repeat expansion disorder, it is thought that similar molecular mechanisms underlie the effect of expanded CAG repeats in different genes. The predicted Age of Onset (AO) for both HD, SCA1 and SCA3 (and 5 other CAG-repeat diseases) is based on the polyQ expansion, but the CAG/polyQ determines the AO only for 50% (see figure below). A large variety on AO is observed, especially for the most common range between 40 and 50 repeats11,12. Large differences in onset, especially in the range 40-50 CAGs not only imply that current individual predictions for AO are imprecise (affecting important life decisions that patients need to make and also hampering assessment of potential onset-delaying intervention) but also do offer optimism that (patient-related) factors exist that can delay the onset of disease.To address both items, we need to generate a better model, based on patient-derived cells that generates parameters that not only mirror the CAG-repeat length dependency of these diseases, but that also better predicts inter-patient variations in disease susceptibility and effectiveness of interventions. Hereto, we will use a staggered project design as explained in 5.1, in which we first will determine which cellular and molecular determinants (referred to as landscapes) in isogenic iPSC models are associated with increased CAG repeat lengths using deep-learning algorithms (DLA) (WP1). Hereto, we will use a well characterized control cell line in which we modify the CAG repeat length in the endogenous ataxin-1, Ataxin-3 and Huntingtin gene from wildtype Q repeats to intermediate to adult onset and juvenile polyQ repeats. We will next expand the model with cells from the 3 (SCA1, SCA3, and HD) existing and new cohorts of early-onset, adult-onset and late-onset/intermediate repeat patients for which, besides accurate AO information, also clinical parameters (MRI scans, liquor markers etc) will be (made) available. This will be used for validation and to fine-tune the molecular landscapes (again using DLA) towards the best prediction of individual patient related clinical markers and AO (WP3). The same models and (most relevant) landscapes will also be used for evaluations of novel mutant protein lowering strategies as will emerge from WP4.This overall development process of landscape prediction is an iterative process that involves (a) data processing (WP5) (b) unsupervised data exploration and dimensionality reduction to find patterns in data and create “labels” for similarity and (c) development of data supervised Deep Learning (DL) models for landscape prediction based on the labels from previous step. Each iteration starts with data that is generated and deployed according to FAIR principles, and the developed deep learning system will be instrumental to connect these WPs. Insights in algorithm sensitivity from the predictive models will form the basis for discussion with field experts on the distinction and phenotypic consequences. While full development of accurate diagnostics might go beyond the timespan of the 5 year project, ideally our final landscapes can be used for new genetic counselling: when somebody is positive for the gene, can we use his/her cells, feed it into the generated cell-based model and better predict the AO and severity? While this will answer questions from clinicians and patient communities, it will also generate new ones, which is why we will study the ethical implications of such improved diagnostics in advance (WP6).
De energietransitie is één van de grootste communicatie-uitdagingen van de komende decennia. Bij de energietransitie zijn verschillende belanghebbenden (stakeholders) met soms tegenstrijdige belangen, zoals overheid, organisaties en burgers. Om de energietransitie goed te laten verlopen, moeten deze stakeholders actief bij het proces betrokken worden. Voordat dergelijke participatie-initiatieven succesvol kunnen zijn, is het allereerst belangrijk om de visies van deze verschillende stakeholdergroepen (professionals uit de publieke sector, professionals uit de energiesector, burgers) op de energietransitie in kaart te brengen. Desalniettemin is er nog weinig onderzoek naar communicatie over de energietransitie binnen de Nederlandse communicatiepraktijk. Het netwerk dat wordt opgezet met deze aanvraag biedt de mogelijkheid om verschillende praktijkperspectieven hierover te koppelen aan wetenschappelijk onderzoek. Specifiek brengen we kennis uit communicatieadviesbureaus, energiesector en beroepsvereniging bij elkaar. Een eerste stap naar een gedeelde kennisbank is een survey-onderzoek naar visies op de energietransitie binnen drie stakeholdergroepen: overheid, organisaties en burgers. De resultaten van deze studie zullen laten zien welke aspecten van de energietransitie door welke stakeholders saillant gemaakt worden, en welke aspecten onderbelicht blijven. Deze resultaten bieden vervolgens een aanzet tot optimalisering van communicatie over de energietransitie binnen deze groepen. Met behulp van de netwerkpartners zullen de resultaten vertaald worden in een tool voor communicatieprofessionals. De resultaten en tool zullen breed gedeeld worden onder Nederlandse communicatieprofessionals en bieden daarnaast een mogelijke opstap naar verdieping van samenwerking binnen het netwerk in vervolgprojecten.
Design Thinking wordt gezien als passende werkwijze om HBO studenten op hun toekomst voor te bereiden. Het is een recente benadering voor het interdisciplinair oplossen van ‘wicked problems’. Vooral co-design geniet populariteit vanwege het veronderstelde emancipatoire karakter. Waar design thinking oorspronkelijk verwees naar ontwerpen voor de materiële wereld (industrieel ontwerp, architectuur), wordt de benadering steeds vaker ingezet voor sociale innovatie. Design Thinking lijkt een blinde vlek voor machtsongelijkheden te hebben, terwijl macht met name in sociale transities een grote rol speelt. Wiens perspectief krijgt voorrang? Naïef optimisme staat dan in de weg van een kritische blik op de vaak tegenstrijdige belangen. Ook is er geen eenduidig beeld van de epistemologische basis van design thinking: het is geen homogeen vakgebied. Daarbij kunnen denken en doen niet gescheiden worden. Daarom is er belangstelling voor onderzoek naar de ontwerppraktijk: wat doen designteams en hoe stemmen ze hun activiteiten af? In deze studie wordt gekeken naar de ontwerppraktijken van hybride teams die zich bezighouden met sociale innovatie. Door te kijken naar zowel ervaren als startende teams, wordt gekeken naar de manieren waarop het deze teams lukt om samenhang te creëren in de framing van het ontwerpproces: ‘framecoherentie’. Ontwerpers werken iteratief: ze ontwikkelen en kiezen frames, maar herzien ze ook regelmatig. Verbeelding speelt hierin een belangrijke rol. Juist in de dagelijkse interacties rondom het ontwikkelen, bepalen en continueren van frames worden gevestigde betekenissen herbevestigd of veranderen ze. Vanuit Weick's raamwerk van 'sensemaking' wordt gekeken naar de ontwerppraktijk als een ‘distributed social accomplishment’. De analyse van macht en verbeelding in de ontwerppraktijken van ervaren en startende teams laat zien op welke wijze ontwerpteams vaardigheden en interventies inzetten en framecoherentie realiseren; welke ontwerpprincipes hieraan ten grondslag liggen en onder welke voorwaarden deze te reproduceren zijn.
