99 research outputs found

    Behavioural activation for depressive symptoms in adults with severe to profound intellectual disabilities: modelling and initial feasibility study

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    Background Almost no research has been published reporting on evaluations of the effectiveness of psychological interventions for people with severe to profound intellectual disabilities and depression. This paper describes the development and initial feasibility testing of an adapted Behavioural Activation therapy (BeatIt2) for this population. Method Phase 1 of the study examined participant recruitment and willingness to be randomised in the context of a planned Randomised Controlled Trial (RCT). Phase 2 examined the feasibility of delivering the intervention. Results Twenty adults with a severe or profound intellectual disability and clinically significant depression were recruited to Phase 1 of the study. In Phase 2, there was 100% participant retention for those recruited to the study at 6-month follow-up. The BeatIt2 therapy was reported to be acceptable for participants. Conclusion COVID disruption meant that it was not possible to complete the planned feasibility RCT. The positive findings suggest that additional evaluation of BeatIt2 is warranted

    A participatory approach to iteratively adapting game design workshops to empower autistic youth

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    IntroductionAutistic people face systemic barriers to fair employment. Informal learning may promote the self-determination transition-age autistic youth need to overcome and/or transform these barriers. This report focuses on the iterative process of developing video game design workshops guided by feedback from autistic students about instructional strategies they found engaging. This study is part of a three-year-long NSF-funded program of research that seeks to empower autistic youth to move toward successful careers by teaching educators how to more effectively guide them.MethodsIn the Summer of 2021, educators at an award-winning NYC-based, not-for-profit, education program, Tech Kids Unlimited (TKU) collaborated with researchers, including autistic students, to iteratively develop and assess two online game design workshops for transition-age autistic youth. Participants selected which workshop they were available for (Workshop 1: n = 18; M age = 16.72  years; Workshop 2: n = 16; M age = 16.56  years). Students in Workshop 2  had more varied support needs and were less motivated to learn video game design than students in Workshop 1. Students completed assessments before and after each workshop and rated their interest in specific workshop activities after each activity. Guided by data from Workshop 1, we revised instructional strategies before conducting Workshop 2.ResultsWe found little evidence for our hypothesis that attentional style would impact educational engagement. However, video game design self-efficacy and self-determination were often positively associated with engagement. Two industry speakers, one of whom was autistic, were among the highest-rated activities. As hypothesized, video game design self-efficacy and self-determination (and unexpectedly) spatial planning improved from pre- to post-test following Workshop 1. Despite our efforts to use what we learned in Workshop 1 to improve in Workshop 2, Workshop 2 did not lead to significant improvements in outcomes. However, students highlighted instructional strategies as a strength of Workshop 2 more often than they had for Workshop 1. Educators highlighted the importance of group “temperature checks,” individualized check-ins, social–emotional support for students and educators, and fostering a positive atmosphere.DiscussionFindings suggest that interactive multimodal activities, stimulating discussions, and opportunities to engage with neurodivergent industry professionals may engage and empower diverse autistic youth

    Learning from the Experts: Evaluating a Participatory Autism and Universal Design Training for University Educators

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    Autistic students experience strengths and challenges that can impact their full inclusion in higher education, including stigma. A participatory team of autistic and non-autistic scholars developed an Autism and Universal Design (UD) training. This participatory approach centered the voices of autistic collaborators in training design and evaluation. Ninety-eight educators from 53 institutions across 5 countries completed assessments before training (pre-tests), 89 completed post-tests (after training), and 82 completed maintenance assessments (a month after post-test). Pre-test autism stigma was heightened among males, educators with less autism knowledge, and those who reported heightened social dominance orientation. Autism knowledge, autism stigma, and attitudes toward UD improved with training. Improvements remained apparent a month after post-test but were somewhat attenuated for knowledge and stigma. To the best of our knowledge, this is the first evidence of maintenance of benefits of an autism training over time. Participants’ main reason for enrolling in the study was to gain a better understanding about neurodiversity. Feedback indicates that this goal was reached by most with the added benefit of gaining understanding about UD. Results suggest that interest in one type of diversity (e.g., autism) can motivate faculty to learn UD-aligned teaching strategies that benefit diverse students more generally.Output Status: Forthcomin

    “Difficult to Sedate”: Successful Implementation of a Benzodiazepine-Sparing Analgosedation-Protocol in Mechanically Ventilated Children

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    We sought to evaluate the success rate of a benzodiazepine-sparing analgosedation protocol (ASP) in mechanically ventilated children and determine the effect of compliance with ASP on in-hospital outcome measures. In this single center study from a quaternary pediatric intensive care unit, our objective was to evaluate the ASP protocol, which included opiate and dexmedetomidine infusions and was used as first-line sedation for all intubated patients. In this study we included 424 patients. Sixty-nine percent (n = 293) were successfully sedated with the ASP. Thirty-one percent (n = 131) deviated from the ASP and received benzodiazepine infusions. Children sedated with the ASP had decrease in opiate withdrawal (OR 0.16, 0.08–0.32), decreased duration of mechanical ventilation (adjusted mean duration 1.81 vs. 3.39 days, p = 0.018), and decreased PICU length of stay (adjusted mean 3.15 vs. 4.7 days, p = 0.011), when compared to the cohort of children who received continuous benzodiazepine infusions. Using ASP, we report that 69% of mechanically ventilated children were successfully managed with no requirement for continuous benzodiazepine infusions. The 69% who were successfully managed with ASP included infants, severely ill patients, and children with chromosomal disorders and developmental disabilities. Use of ASP was associated with decreased need for methadone use, decreased duration of mechanical ventilation, and decreased ICU and hospital length of stay

    Perspectives on ENCODE

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    The Encylopedia of DNA Elements (ENCODE) Project launched in 2003 with the long-term goal of developing a comprehensive map of functional elements in the human genome. These included genes, biochemical regions associated with gene regulation (for example, transcription factor binding sites, open chromatin, and histone marks) and transcript isoforms. The marks serve as sites for candidate cis-regulatory elements (cCREs) that may serve functional roles in regulating gene expression1. The project has been extended to model organisms, particularly the mouse. In the third phase of ENCODE, nearly a million and more than 300,000 cCRE annotations have been generated for human and mouse, respectively, and these have provided a valuable resource for the scientific community.11Nsciescopu

    Expanded encyclopaedias of DNA elements in the human and mouse genomes

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    AbstractThe human and mouse genomes contain instructions that specify RNAs and proteins and govern the timing, magnitude, and cellular context of their production. To better delineate these elements, phase III of the Encyclopedia of DNA Elements (ENCODE) Project has expanded analysis of the cell and tissue repertoires of RNA transcription, chromatin structure and modification, DNA methylation, chromatin looping, and occupancy by transcription factors and RNA-binding proteins. Here we summarize these efforts, which have produced 5,992 new experimental datasets, including systematic determinations across mouse fetal development. All data are available through the ENCODE data portal (https://www.encodeproject.org), including phase II ENCODE1 and Roadmap Epigenomics2 data. We have developed a registry of 926,535 human and 339,815 mouse candidate cis-regulatory elements, covering 7.9 and 3.4% of their respective genomes, by integrating selected datatypes associated with gene regulation, and constructed a web-based server (SCREEN; http://screen.encodeproject.org) to provide flexible, user-defined access to this resource. Collectively, the ENCODE data and registry provide an expansive resource for the scientific community to build a better understanding of the organization and function of the human and mouse genomes.11Nsciescopu

    Perinatal and child mortality, under-nutrition and cerebral palsy : a cross sectional survey in rural Bangladesh

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    Bangladesh has achieved commendable progress in alleviation of poverty in recent years and, in association, the overall nutritional status of mothers and children has improved, and child mortality has fallen [1,2]. According to the regular Bangladesh Demographic and Health Surveys, the Stillbirth Rate (SBR) fell from 37 per 1000 pregnancies in 2004 to 21 in 2014 [3], and the Perinatal Mortality Rate (PMR) fell from 65 deaths per 1000 pregnancies in 2000 to 44 in 2014. And from 1994 to 2014, for every 1000 live births, the Neonatal Mortality Rate (NMR) fell from 52 to 28, the Infant Mortality Rate from 87 to 38, and the <5 year Child Mortality Rate from 133 to 46. While BDHS provide information from many regions, they do not provide specific data from the far north of Mymensingh District where two non-government agencies, Symbiosis International and the Mennonite Central Committee, have, for many years, been involved in developmental projects. In November 2018, in order to review their progress and to plan for the future, these organisations surveyed indices of child and maternal health, and related socioeconomic factors, in 25 sites in that region. This paper reviews aspects of morbidity and mortality of children in those sites and compares them with BDHS and other sources. In other reports we examine anthropometry of children and factors relating to maternal health

    Hypervalent iodine reactions utilized in carbon–carbon bond formations

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    Maternal nutrition, social correlates and obstetric outcomes in northern Mymensingh, Bangladesh

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    National indices of maternal health have improved in Bangladesh, but no data is available from rural Mymensingh where two non-government aid agencies have been working for years. Surveys were held to inform their planning. Methods: In November 2018, aided by a research team from Western Sydney University, Australia, anthropometric, mortality and socioeconomic data was compiled from 25 sites around Haluaghat and Dhobaura, and compared with national figures. Results: Of 1982 mothers surveyed: 15.5% were ‘stunted’(<145 cm) vs 15.7% in Sylhet, and 13.3% in Dhaka, correlating with poverty, reduced education, and stunting of offspring. 13% were underweight (BMI <18.5 kg/m2) vs 29.8% in Sylhet and 18.2% in Dhaka. Conversely, overweight was common. Of stunted mothers 14.4% were ‘at risk’, 26.1% overweight and 4.2% obese. 29.7% consumed betel nut. Stillbirth, Perinatal, Neonatal and Child Mortality rates were very high: 89.8, 108.8, 27.45, and 61.3 respectively. 63.5% of births occurred at home with untrained assistance. 33.2% of mothers were married < 16 years, and suffered higher Neonatal and Child Mortality Rates
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