Background Differing perspectives of self-harm may result in a struggle between patients and treatment staff. As a consequence, both sides have difficulty communicating effectively about the underlying problems and feelings surrounding self-harm. Between 2009 and 2011, a programme was developed and implemented to train mental health care staff (nurses, social workers, psychologists, psychiatrists, and occupational therapists) in how to communicate effectively with and care for patients who self-harm. An art exhibition focusing on self-harm supported the programme. Lay experts in self-harm, i.e. people who currently harm themselves, or who have harmed themselves in the past and have the skills to disseminate their knowledge and experience, played an important role throughout the programme. Methods Paired sample t-tests were conducted to measure the effects of the training programme using the Attitude Towards Deliberate Self-Harm Questionnaire, the Self-Perceived Efficacy in Dealing with Self-Harm Questionnaire, and the Patient Contact Questionnaire. Effect sizes were calculated using r. Participants evaluated the training programme with the help of a survey. The questionnaires used in the survey were analysed descriptively. Results Of the 281 persons who followed the training programme, 178 completed the questionnaires. The results show a significant increase in the total scores of the three questionnaires, with large to moderate effect sizes. Respondents were positive about the training, especially about the role of the lay expert. Conclusion A specialised training programme in how to care for patients who self-harm can result in a more positive attitude towards self-harm patients, an improved self-efficacy in caring for patients who self-harm, and a greater closeness with the patients. The deployment of lay experts is essential here
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Functional Magnetic Resonance Imaging (fMRI) was used to study the cerebral underpinning of resonance behavior in professional keyboard musicians (n=12). The activation paradigm implied that subjects listened to two-part polyphonic music, while either critically appraising the performance or imagining they were performing themselves. Two-voice audition and bimanual motor imagery circumvented a hemisphere bias associated with a main melody.Both tasks activated ventral premotor and auditory cortices, bilaterally, and the anterior parietal cortex right-dominantly, compared to 12 musically unskilled controls. Although left ventral premotor activation was increased during imagery (compared to judgment), bilateral dorsal premotor and right posterior-superior parietal activations were quite unique to motor imagery, suggesting that musicians not only recruited their manual motor repertoire but alsoperformed a spatial transformation from the vertical perceived pitch axis to the horizontal keyboard. Imagery-specific activations in controls comprised left dorsal parietal-premotor and supplementary motor cortices. Although these activations were less strong compared to musicians, this overlapping distribution indicated the recruitment of a general 'mirror-neuron'circuitry. These two levels of sensori-motor transformations point towards common principles by which the brain organizes audition-driven music performance and visually guided task performance.
Stakeholder engagement in Environmental Impact Assessment (EIA) and Health Impact Assessment (HIA) provides opportunities for inclusive environmental decision-making contributing to the attainment of agreement about the potential environmental and health impacts of a plan. A case evaluation of stakeholder engagement was carried out to assess its effect in terms of consensus-building. The case consisted in two health impact scoping workshops engaging 20 stakeholders: policy-makers, experts and residents. A Participatory Action Research approach was adopted. Methods included observation, semi-structured questionnaires and interviews. Analysis methods consisted of several coding rounds, in-depth reading and discussion of Atlas.ti output reports, as well as studying questionnaire results. Participants reported a broadening of perspectives on health in relation to the environment and attainment of shared perspectives. Still, meaningful differences remained, indicating that joint learning experiences, trust and mutual respect created a ‘sense of consensus’ rather than a joint view on the issues at stake. To avoid disappointment and conflict in later project development, explicit acknowledgment and acceptance of disagreements should be included as a ground rule in future stakeholder engagement processes.
De, bijna oneindige, mogelijkheden van digitale (3D print)technieken prikkelen de geest en zetten aan tot creatief denken. Voorheen onmogelijke vormen worden mogelijk en kunnen op locatie en op maat worden gemaakt. Het (primair) onderwijs ziet grote potentie in 3D (print)technieken als onderwijsthema om structureel en actief mee aan de slag te gaan in de klas, om 21ste Century Skills te ontplooien bij zowel leerkrachten als leerlingen en om als thema in te zetten binnen Wetenschap & Technologie-onderwijs. De onderwijsketen is een cruciale partner in de Human Capital Agenda met haar taak om van jongs af aan kinderen op te leiden tot een moderne professional die kan uitblinken in een snel veranderende innovatie-economie. Met dat doel voor ogen zoekt het primair onderwijs structureel naar manieren om de lesprogramma’s actueel en effectief te houden. Door een toenemend aanbod van 3D (print)technieken en diensten zoeken directies, leerkrachten maar ook het team talentontwikkeling van de Gemeente Enschede naar betrouwbare experts die de scholen advies, begeleiding en (uiteindelijk) professionalisering op maat kunnen bieden. Saxion FabLab Enschede, een publieke moderne makerspace en verbonden aan Saxion Lectoraat Industrial Design, richt zich op de verbinding tussen (HBO) onderwijs, onderzoek en het bedrijfsleven. Sinds de oprichting in 2011 krijgt het FabLab ook structureel vragen vanuit het primair onderwijs (PO) om deze doelgroep hands-on in contact te brengen met moderne (3D) technieken. Waar mogelijk zijn bovengenoemde vragen opgepakt met in samenwerking met scholen en bedrijven. Knelpunten die hierbij naar voren zijn gekomen, zijn dat leerkrachten na de opstart niet weten hoe ze onvermijdelijke technische problemen moeten oplossen en/of het ontbreekt hen de kennis om een volgende verdiepende stap (zelf) te zetten. Gevolg is dat men niet verder komt dan het doen van demonstraties en/of een eerste (simpel) productje, of dat de printers stil in een hoek staan te ver-stoffen. Deze ervaringen uit Enschede zijn in lijn met conclusies van een eerder onderzoek in Flevoland (Van Keulen & van Oenen, 2015) Doel van het traject “3D in de klas” is de bundeling van krachten binnen het consortium rondom de ontwikkeling van uitdagend en uitnodigend Wetenschap & Techniek-onderwijs voor leerling en leerkracht in het primair onderwijs, door leerkrachten te scholen in 3D printen, door lesprogramma’s te ontwikkelen die verder gaan dan het ‘printen van de standaard sleutelhanger’ en door een didactische verbreding te bieden door het koppelen van kennisdomeinen. Het initiatief voor gezamenlijk onderzoek en 3D in de Klas is opgedeeld in drie delen: Deel 1) Mapping the state of the art: leren van eerdere initiatieven en de knelpunten. Deel 2) Doelgroep betrokkenheid in kaart brengen, van leerkrachten en leerlingen, inhoudelijk en organisatorisch. Deel 3) Structurele inbedding, door afstemming op en integratie in de PO-keten. Het voorliggende projectvoorstel beslaat deel 1 van dit traject. Resultaat van dit deelproject hiervan vormt de basis voor deel 2 en 3 in een vervolgtraject, mogelijk in een RAAK-publiek vorm. Saxion FabLab Enschede heeft de afgelopen jaren een actief consortium opgebouwd dat bovenstaande impasse wil doorbreken. Het consortium bestaat naast het FabLab o.a. uit: Saxion Lectoraat Industrial Design en Academie Pedagogiek en Onderwijs, ESV, Stichting Consent, Bètatechtniek, Gemeente Enschede (Team Talentontwikkeling) en het bedrijf LAYaLAY.
Everyone has the right to participate in society to the best of their ability. This right also applies to people with a visual impairment, in combination with a severe or profound intellectual and possibly motor disability (VISPIMD). However, due to their limitations, for their participation these people are often highly dependent on those around them, such as family members andhealthcare professionals. They determine how people with VISPIMD participate and to what extent. To optimize this support, they must have a good understanding of what people with disabilities can still do with their remaining vision.It is currently difficult to gain insight into the visual abilities of people with disabilities, especially those with VISPIMD. As a professional said, "Everything we can think of or develop to assess the functional vision of this vulnerable group will help improve our understanding and thus our ability to support them. Now, we are more or less guessing about what they can see.Moreover, what little we know about their vision is hard to communicate to other professionals”. Therefore, there is a need for methods that can provide insight into the functional vision of people with VISPIMD, in order to predict their options in daily life situations. This is crucial knowledge to ensure that these people can participate in society to their fullest extent.What makes it so difficult to get this insight at the moment? Visual impairments can be caused by a range of eye or brain disorders and can manifest in various ways. While we understand fairly well how low vision affects a person's abilities on relatively simple visual tasks, it is much more difficult to predict this in more complex dynamic everyday situations such asfinding your way or moving around during daily activities. This is because, among other things, conventional ophthalmic tests provide little information about what people can do with their remaining vision in everyday life (i.e., their functional vision).An additional problem in assessing vision in people with intellectual disabilities is that many conventional tests are difficult to perform or are too fatiguing, resulting in either no or the wrong information. In addition to their visual impairment, there is also a very serious intellectual disability (possibly combined with a motor impairment), which makes it even more complex to assesstheir functional vision. Due to the interplay between their visual, intellectual, and motor disabilities, it is almost impossible to determine whether persons are unable to perform an activity because they do not see it, do not notice it, do not understand it, cannot communicate about it, or are not able to move their head towards the stimulus due to motor disabilities.Although an expert professional can make a reasonable estimate of the functional possibilities through long-term and careful observation, the time and correct measurement data are usually lacking to find out the required information. So far, it is insufficiently clear what people with VZEVMB provoke to see and what they see exactly.Our goal with this project is to improve the understanding of the visual capabilities of people with VISPIMD. This then makes it possible to also improve the support for participation of the target group. We want to achieve this goal by developing and, in pilot form, testing a new combination of measurement and analysis methods - primarily based on eye movement registration -to determine the functional vision of people with VISPIMD. Our goal is to systematically determine what someone is responding to (“what”), where it may be (“where”), and how much time that response will take (“when”). When developing methods, we take the possibilities and preferences of the person in question as a starting point in relation to the technological possibilities.Because existing technological methods were originally developed for a different purpose, this partly requires adaptation to the possibilities of the target group.The concrete end product of our pilot will be a manual with an overview of available technological methods (as well as the methods themselves) for assessing functional vision, linked to the specific characteristics of the target group in the cognitive, motor area: 'Given that a client has this (estimated) combination of limitations (cognitive, motor and attention, time in whichsomeone can concentrate), the order of assessments is as follows:' followed by a description of the methods. We will also report on our findings in a workshop for professionals, a Dutch-language article and at least two scientific articles. This project is executed in the line: “I am seen; with all my strengths and limitations”. During the project, we closely collaborate with relevant stakeholders, i.e. the professionals with specific expertise working with the target group, family members of the persons with VISPIMD, and persons experiencing a visual impairment (‘experience experts’).
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).
