This article presents results of a qualitative analysis based on biographic narratives of three young, well-educated women from Syria. They arrived in the Netherlands between 2015 and 2017 in the context of family reunion. The central question is how young Syrian women navigate between two major projects that ask for their agency, being family and work. It is argued that both occupational career development and the building of a family are ‘agentic projects’ that aim to contribute to the establishment of a new life and to regain continuity. The analyses demonstrate that both projects are closely intertwined. Agency emerges as highly relational and intersecting with the women’s position in the life course, timing of life events, ability to adapt career goals to the new situation, and impact of social contexts on family relations.
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This research focuses on dinner conversations in family-style group care. Children, who cannot live with their biological families anymore, are given shelter in these family-style group care settings. For the development of an attachment relationship between children and their Professional Foster Parents (PFPs), it is important that the children feel that they are listened to in order to get an affective and intimate relationship with the parents. In this conversation-analytic research we analysed PFPs’ involvement in multiple activities simultaneously, namely listening and eating, which is referred to as ‘multi-activity’. The analyses have shown systematic ways in which PFPs coordinate their involvement in the activities of ‘doing’ listening and eating, which are (i) when parents avert their gaze from the telling child, they break the social rule which states that hearers need to look at speakers during the telling. We found that when averting their gaze, PFPs do head nods and linguistic means or positioning their bodies in the direction of the telling child. This research contributes to knowledge about interaction between adolescents and PFPs. It further contributes to knowledge about how human beings are able to coordinate multiple activities simultaneously. This is the accepted version (post-print) of the article.
A new viral illness called coronavirus disease 2019 (COVID-19) is currently spreading throughout the world at an alarming rate (Dong et al., 2020). As family nursing practitioners, educators, and researchers, we work from a guiding assumption that health and “illness is a family affair” (Wright & Bell, 2009, p. ix). Patients, clients, residents, and their families are inextricably connected. The science and practice of Family Nursing is based on a systemic premise offered by Wright and Leahey (2013) that serious illness and life challenges impact the family unit, and reciprocally, the functioning of the family unit (including their structure, development, and function) influences the health and well-being of each family member. This especially holds true for the current coronavirus pandemic which is creating unique hardships and suffering in an alarmingly large number of patients and their families around the world.
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).
Promoting entrepreneurship is an enabler of smart, sustainable and inclusive growth and it is one objective EU regions have pursued since the EC included it into 2020 Strategy. Entrepreneurship development has economic and social benefits, since it is not only a driving force for job creation, competitiveness and growth; it also contributes to personal fulfillment and to achieve social objectives. That is why the EU encourages entrepreneurial initiatives and to unlock the growth potential of businesses and citizens. However, only a 37% of Europeans (Eurobarometer 2012) would like to be self-employed. The Entrepreneurship Action Plan adopted by the EC in 2013 to reignite Europe’s entrepreneurial spirit includes initiatives for educating young people on entrepreneurship. To ensure that EU economy remains globally competitive, young generations of Europeans need to be inspired to develop their entrepreneurial mindset. EU 2020 Action Plan argues that young people benefitting of a specialised entrepreneurial education are more likely to start-up a business and to better tackle challenges in their professional career and life in general. Hence, there is good reason to ensure better quality of entrepreneurial education. Most approaches in recent years have focused on improving the skills or competences youngsters should obtain only within the education system. However, an integrated approach is needed, where the school, their friends, family and the social environment, shall play each one a relevant role, contributing to generate a more adequate atmosphere to boost their entrepreneurial mindsets, intrapreneurial attitudes and innovation capacities. This project will identify and exchange – through a quadruple helix approach- good practices for creating friendlier entrepreneurial ecosystems and actions to boost entrepreneurship in young people mindsets. The good practices and lessons learnt will be transferred into Action Plans to be included in regional policies.
