This article examines the ethics of tourism and cross-cultural communication between Western tourists and the local community in a Muslim country. Communicating with people who have different value systems and communication styles can contribute to various "culture shock situations" and to an increase in stereotypes and "stigma." The main goal of this research is to analyze the dress behavior of cruise tourists, applying the concept of "mindfulness" and secondly to analyze the voices and values of the resident community and of other tourists. Any apparent contradictions will be identified between local values, pretravel information, media social constructions, and tourist dress behaviors, and suggestions will be proposed about how to avoid culture shock situations. Two questionnaire surveys were conducted with German-speaking cruise tourists visiting two different destinations in the Sultanate of Oman during 2012 (N = 830) and 2013 (N = 235). In addition, in-depth interviews were conducted with members of the local community and cultural brokers as well as with tourists, onboard tour guides, and an onboard pastor. Moreover, government officials and the Assistant Grand Mufti were interviewed and pretravel information was studied. The results indicate that a mindless dress behavior has been facilitated by the type of information that is provided prior to travel and by cultural brokers, both on shore and on board, who do not make explicit reference to local dress codes. This approach promotes a concept of tolerance towards the tourist and an "accommodationist" and "laissez faire" attitude. On the other hand, tourist dress behaviors can be seen as a reflection of the posttourist, who is seeking individual authenticity and freedom. For the local community the increase in the number of mindless cruise tourists exceeds the level of acceptable tolerance in both places and has created "culture shock" situations. This research fills a major gap in applied research on the cruise tourist behaviors in a Muslim country and on crosscultural communication.
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Background: Community care professionals need to encourage older adults in performing functional activities to maintain independence. However, professionals often perform functional activities on behalf of older adults. To change this, insights into the behavior and barriers of professionals in encouraging activities are required. In the current study, the MAINtAIN questionnaire, which was developed for nursing homes, was adopted. The objective was to create a modified version that is suitable for measuring behavior and barriers of community care professionals in encouraging functional activities of clients in the community care setting. The overall aims were to assess the content validity, construct validity, and internal consistency of the modified version. Methods: Data was collected by qualitative and quantitative methods in two phases. During phase one, the MAINtAIN was assessed on appropriateness and feasibility by community nurses (N = 7), and the adapted questionnaire was assessed on content validity by research experts (N = 9) and community care professionals (N = 18). During phase two, the psychometric properties of the adapted MAINtAIN-C were assessed in community care professionals (N = 80). Construct validity was evaluated by an Exploratory Factor Analysis (EFA), and internal consistency was determined by calculating Cronbach’s alpha coefficients. Results: The formulation, verbs, and wording of the MAINtAIN were adapted; some items were excluded and relevant items were added, resulting in the MAINtAIN-C with two scales, showing good content validity. The Behaviors scale (20 items) measures perceived behavior in encouraging functional activities, expressing good internal consistency (Cronbach’s alpha: .92). The Barriers scale measures barriers in encouraging functional activities related to two dimensions: 1) the clients’ context (7 items), with good internal consistency (.78); and 2) the professional, social, and organizational contexts (21 items), showing good internal consistency (.83). Conclusions: The MAINtAIN-C seems promising to assess the behavior and barriers of community care professionals in encouraging functional activities. It can be used to display a possible difference between perceived and actual behavior, to develop strategies for removing barriers in encouraging activities to foster behavioral change. The results also provide guidance for further research in a larger sample to obtain more insight into the psychometric properties.
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Background: Functional decline is common in nursing home residents. Nursing staff can help prevent this decline, by encouraging residents to be more active in functional activities. Questionnaires measuring the extent to which nursing staff encourage functional activity among residents are lacking. In addition, there are no measurement instruments to gain insight into nursing staff perceived barriers and facilitators to this behavior. The aim of this study was to develop, and study the usability, of the MAastrIcht Nurses Activities INventory (MAINtAIN), an inventory assessing a) the extent to which nursing staff perceive to perform behaviors that optimize and maintain functional activity among nursing home residents and b) the perceived barriers and facilitators related to this behavior. Methods: Using a mixed-methods approach the MAINtAIN was developed and its usability was studied. Development was based on literature, expert opinions, focus group (N = 3) and individual interviews (N = 14) with residents and staff from nine nursing homes in the Netherlands. Usability was studied in a cross-sectional study with 37 nurses and certified nurse assistants; data were analyzed using descriptive statistics. Results: Development of the MAINtAIN resulted in two distinctive parts: MAINtAIN-behaviors and MAINtAIN-barriers. MAINtAIN-behaviors, targeting nursing staff behavior to optimize and maintain functional activity, includes 19 items covering activities of daily living, household activities, and miscellaneous activities. MAINtAIN-barriers addresses the perceived barriers and facilitators related to this behavior and comprises 33 items covering barriers and facilitators related to the residents, the professionals, the social context, and the organizational and economic context. The usability study showed that the inventory was not difficult to complete, that items and response options were clear,and that the number of missing values was low. Few items showed a floor or ceiling effect. Conclusions: The newly developed inventory MAINtAIN provides a usable method for researchers and nursing homes to obtain insight into nursing staff perceived behavior in optimizing functional activity among residents and their perceived barriers and facilitators related to this behavior. Outcomes of the MAINtAIN may contribute to change in nursing staff behavior and may improve nursing care. Further research with regard to the psychometric properties of the MAINtAIN is recommended.
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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).
‘Dieren in de dijk’ aims to address the issue of animal burrows in earthen levees, which compromise the integrity of flood protection systems in low-lying areas. Earthen levees attract animals that dig tunnels and cause damages, yet there is limited scientific knowledge on the extent of the problem and effective approaches to mitigate the risk. Recent experimental research has demonstrated the severe impact of animal burrows on levee safety, raising concerns among levee management authorities. The consortium's ambition is to provide levee managers with validated action perspectives for managing animal burrows, transitioning from a reactive to a proactive risk-based management approach. The objectives of the project include improving failure probability estimation in levee sections with animal burrows and enhancing risk mitigation capacity. This involves understanding animal behavior and failure processes, reviewing existing and testing new deterrence, detection, and monitoring approaches, and offering action perspectives for levee managers. Results will be integrated into an open-access wiki-platform for guidance of professionals and in education of the next generation. The project's methodology involves focus groups to review the state-of-the-art and set the scene for subsequent steps, fact-finding fieldwork to develop and evaluate risk reduction measures, modeling failure processes, and processing diverse quantitative and qualitative data. Progress workshops and collaboration with stakeholders will ensure relevant and supported solutions. By addressing the knowledge gaps and providing practical guidance, the project aims to enable levee managers to effectively manage animal burrows in levees, both during routine maintenance and high-water emergencies. With the increasing frequency of high river discharges and storm surges due to climate change, early detection and repair of animal burrows become even more crucial. The project's outcomes will contribute to a long-term vision of proactive risk-based management for levees, safeguarding the Netherlands and Belgium against flood risks.
CRISPR/Cas genome engineering unleashed a scientific revolution, but entails socio-ethical dilemmas as genetic changes might affect evolution and objections exist against genetically modified organisms. CRISPR-mediated epigenetic editing offers an alternative to reprogram gene functioning long-term, without changing the genetic sequence. Although preclinical studies indicate effective gene expression modulation, long-term effects are unpredictable. This limited understanding of epigenetics and transcription dynamics hampers straightforward applications and prevents full exploitation of epigenetic editing in biotechnological and health/medical applications.Epi-Guide-Edit will analyse existing and newly-generated screening data to predict long-term responsiveness to epigenetic editing (cancer cells, plant protoplasts). Robust rules to achieve long-term epigenetic reprogramming will be distilled based on i) responsiveness to various epigenetic effector domains targeting selected genes, ii) (epi)genetic/chromatin composition before/after editing, and iii) transcription dynamics. Sustained reprogramming will be examined in complex systems (2/3D fibroblast/immune/cancer co-cultures; tomato plants), providing insights for improving tumor/immune responses, skin care or crop breeding. The iterative optimisations of Epi-Guide-Edit rules to non-genetically reprogram eventually any gene of interest will enable exploitation of gene regulation in diverse biological models addressing major societal challenges.The optimally balanced consortium of (applied) universities, ethical and industrial experts facilitates timely socioeconomic impact. Specifically, the developed knowledge/tools will be shared with a wide-spectrum of students/teachers ensuring training of next-generation professionals. Epi-Guide-Edit will thus result in widely applicable effective epigenetic editing tools, whilst training next-generation scientists, and guiding public acceptance.
