Background: Although sleep problems in autistic teenagers are associated with impaired daytime functioning, it remains unclear how sleep and daytime functioning are related. Method: We used a network approach to disentangle patterns between sleep, sleep hygiene, and daytime functioning. Over a three-week period, 31 autistic teenagers answered daily questions about sleep and daytime functioning. Sleep tracker data were collected from 14 of the teenagers. We preregistered the analysis plan for this study at AsPredicted (#34594; https://aspredicted. org/blind.php?x = 3c4t65). Results: Perceived sleep quality seemed to be the most important sleep variable in relation to daytime functioning (self/parent/teacher reports). We also found that sleep onset latency, total sleep time, and wake time after sleep onset were related to daytime functioning, but mostly indirectly through perceived sleep quality. Conclusion: These findings are important for developing sleep interventions because perceived sleep quality would be a logical target for increasing the likelihood of actually improving daytime functioning.
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Background: Marfan syndrome (MFS) is a heritable connective tissue disease caused by a defect in FBN1. The diagnosis is based on the revised Ghent criteria. The main features involve the cardiovascular, musculoskeletal, ophthalmic, pulmonary systems and facial features. Although the clinical manifestations of MFS in children are thoroughly addressed in several studies, literature on the impact of MFS on daily functioning is restricted to pediatric advice on sports and leisure participation. Therefore, the full impact of MFS on daily functioning remains unclear. The aim of this qualitative study was to explore parents' perspectives on the impact of MFS on daily functioning of children with MFS aged 4-12 years, themselves and family regarding functional performance, activities, participation, personal and environmental factors, and disease burden. Methods: In this qualitative study parents participated in individual semi-structured interviews (n = 10) and 3 focus groups (n = 5, n = 5 and n = 6). Meetings were transcribed, and data were analyzed using thematic analysis. Meaningful concepts were coded, and concepts concerning children with MFS were linked to the International Classification of Functioning, Disability and Health for Children and Youth. Thereafter themes were identified and interpreted.Results: Parents reported their children could not keep up with peers because of fatigue, pain and physical impairments. Children experienced participation restrictions in school, sports, play and other leisure activities. Parents reported their child as being different due to physical appearance, which provoked unsupportive attitudes. Parental burden was caused by high care needs, lack of support, a limited social life, and concerns about the child's development. Family burden was caused by adjusted and complex family schedules, other family members with MFS, and reproductive planning decision-making, whereas family cohesiveness and caring were positively perceived factors. Conclusions: Parents perceived a large impact of MFS on daily functioning of their children with MFS, themselves and their family. More awareness among all professionals involved in the care of children with MFS and their families is needed so that professionals can address their support needs and provide tailored interventions, rehabilitation and/or educational programs to empower and improve daily functioning of the children, parents and family.
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The pressure on the European health care system is increasing considerably: more elderly people and patients with chronic diseases in need of (rehabilitation) care, a diminishing work force and health care costs continuing to rise. Several measures to counteract this are proposed, such as reduction of the length of stay in hospitals or rehabilitation centres by improving interprofessional and person-centred collaboration between health and social care professionals. Although there is a lot of attention for interprofessional education and collaborative practice (IPECP), the consortium senses a gap between competence levels of future professionals and the levels needed in rehabilitation practice. Therefore, the transfer from tertiary education to practice concerning IPECP in rehabilitation is the central theme of the project. Regional bonds between higher education institutions and rehabilitation centres will be strengthened in order to align IPECP. On the one hand we deliver a set of basic and advanced modules on functioning according to the WHO’s International Classification of Functioning, Disability and Health and a set of (assessment) tools on interprofessional skills training. Also, applications of this theory in promising approaches, both in education and in rehabilitation practice, are regionally being piloted and adapted for use in other regions. Field visits by professionals from practice to exchange experiences is included in this work package. We aim to deliver a range of learning materials, from modules on theory to guidelines on how to set up and run a student-run interprofessional learning ward in a rehabilitation centre. All tested outputs will be published on the INPRO-website and made available to be implemented in the core curricula in tertiary education and for lifelong learning in health care practice. This will ultimately contribute to improve functioning and health outcomes and quality of life of patients in rehabilitation centres and beyond.
266 woorden Op school kan de situatie zich voordoen dat de leerkracht onvoldoende tegemoet kan komen aan de extra ondersteuning die leerlingen met autisme nodig hebben. De klas kan te groot zijn, de leerkracht kan handelingsverlegen zijn, etc.. In dit projectplan wordt onderbouwd wat de relevantie is voor de dagelijkse praktijk van de leerkracht en de leerling met autisme en daaraan gerelateerde problemen. Tevens wordt onderbouwd waarom beeldende therapie theoretisch en empirisch kan bijdragen als creatieve oplossing voor kinderen met aan autisme gerelateerde problemen die in de klas extra aandacht vragen. Deze kinderen hebben een andere manier van informatie verwerken, kunnen zich vaak verbaal moeilijk uiten en hebben vaak sociale problemen. Deze kinderen lopen risico op verslavingsproblematiek (33%) en eenzaamheid, angst en depressie op volwassen leeftijd (80%). Kunstvormen in een leeromgeving bieden andere mogelijkheden voor kinderen om zich te uiten en om samen te werken. In dit projectplan wordt beschreven waarom het zinvol is te onderzoeken wat de effectiviteit is van beeldende therapie voor kinderen met autisme in primair (speciaal) onderwijs, ter preventie van risicogedrag. Het behandelprogramma ‘Zelf in beeld, beeldende therapie voor kinderen met autisme (bijlage 1) lijkt veelbelovende resultaten op te leveren (Schweizer, 2020). Om een indruk van de resultaten van praktijkgericht onderzoek naar ‘Zelf in beeld’ te krijgen kunt u de korte animatie bekijken (3 min): https://youtu.be/cVAAzRHZnb0 In dit vervolgproject wordt verkend in hoeverre ‘Zelf in beeld’ van toegevoegde waarde van kan zijn voor kind, leerkracht en ouders, binnen de setting van Speciaal Onderwijs. Dit project heeft een innovatief karakter omdat er een nieuwe vorm van (preventief) werken binnen passend onderwijs wordt toegepast en onderzocht.
Collaborative networks for sustainability are emerging rapidly to address urgent societal challenges. By bringing together organizations with different knowledge bases, resources and capabilities, collaborative networks enhance information exchange, knowledge sharing and learning opportunities to address these complex problems that cannot be solved by organizations individually. Nowhere is this more apparent than in the apparel sector, where examples of collaborative networks for sustainability are plenty, for example Sustainable Apparel Coalition, Zero Discharge Hazardous Chemicals, and the Fair Wear Foundation. Companies like C&A and H&M but also smaller players join these networks to take their social responsibility. Collaborative networks are unlike traditional forms of organizations; they are loosely structured collectives of different, often competing organizations, with dynamic membership and usually lack legal status. However, they do not emerge or organize on their own; they need network orchestrators who manage the network in terms of activities and participants. But network orchestrators face many challenges. They have to balance the interests of diverse companies and deal with tensions that often arise between them, like sharing their innovative knowledge. Orchestrators also have to “sell” the value of the network to potential new participants, who make decisions about which networks to join based on the benefits they expect to get from participating. Network orchestrators often do not know the best way to maintain engagement, commitment and enthusiasm or how to ensure knowledge and resource sharing, especially when competitors are involved. Furthermore, collaborative networks receive funding from grants or subsidies, creating financial uncertainty about its continuity. Raising financing from the private sector is difficult and network orchestrators compete more and more for resources. When networks dissolve or dysfunction (due to a lack of value creation and capture for participants, a lack of financing or a non-functioning business model), the collective value that has been created and accrued over time may be lost. This is problematic given that industrial transformations towards sustainability take many years and durable organizational forms are required to ensure ongoing support for this change. Network orchestration is a new profession. There are no guidelines, handbooks or good practices for how to perform this role, nor is there professional education or a professional association that represents network orchestrators. This is urgently needed as network orchestrators struggle with their role in governing networks so that they create and capture value for participants and ultimately ensure better network performance and survival. This project aims to foster the professionalization of the network orchestrator role by: (a) generating knowledge, developing and testing collaborative network governance models, facilitation tools and collaborative business modeling tools to enable network orchestrators to improve the performance of collaborative networks in terms of collective value creation (network level) and private value capture (network participant level) (b) organizing platform activities for network orchestrators to exchange ideas, best practices and learn from each other, thereby facilitating the formation of a professional identity, standards and community of network orchestrators.
