1,895 research outputs found

    Troubling norms? Adults and teenagers with a life-limiting impairment in Denmark and England talk about their lives, support and future plans

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    There are an increasing number of young people with a range of life-limiting impairments in our schools, colleges, universities and communities. One of these impairments is Duchenne Muscular Dystrophy (DMD), a rare, life-limiting genetic muscle-wasting impairment that affects predominantly males. Twenty years ago, most people with DMD did not live past the age of twenty years, but now due to a range of treatments they are living longer. However, education and social care services are often yet to catch up with this improved prognosis. The aim of this paper is to compare the findings from structured conversations with members of the DMD community in Denmark and England. Historically, adults in Denmark have reported a good quality of life with an optimal health care programme and generous social care, whereas adults with DMD in England have reported poor transition to adulthood planning leading to social isolation as an adult. Findings identified three key themes: the existence of normative goals; expertise from lived experience, and the meaning of independence for someone with a complex impairment. These themes are further discussed through the lens of ‘post-human thinking’, and implications for practice are explored

    Aspiration, austerity and ableism: to what extent are the 2014 SEND reforms supporting young people with a life‐limiting impairment and their families to get the lives they want?

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    In England, legislation introduced in 2014 to reform support for children and young people with special educational needs and disability (SEND) from birth to 25 years of age has been described as the biggest change in SEND for 30 years. Support now focuses on improved outcomes for young people with SEND, and aims to be more aspirational and person‐centred, with the child and family ‘at the heart of the process’. This could be viewed as timely for young people with Duchenne muscular dystrophy (DMD), a genetic life‐limiting impairment, who, due to improved care and interventions, are now living longer. The aim of this small‐scale qualitative study is to explore whether young people with DMD, their parents and schools feel that these reforms are able to support young people with life‐limiting impairments to get the lives they want. Findings suggest that parents and children with DMD welcome the new person‐centred philosophy, but are still forced to fight for funding and support in a system of reduced resources. Austerity and its role in the narrative of neo‐liberalism is also explored

    Report on the Psycho-Social Needs and Support in Duchenne Muscular Dystrophy: The ‘Cinderella’ of DMD Care

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    oai:repository.uel.ac.uk:8x1w

    Improving the reading skills of young people with Duchenne muscular dystrophy in preparation for adulthood

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    Duchenne muscular dystrophy (DMD) is a progressive genetic condition that affects both muscle and brain. Children with DMD are at risk of psycho-social difficulties such as poor academic achievement and behavioural and socio-emotional problems. This article by Janet Hoskin and Angela Fawcett, both from the University of Swansea, describes how 34 participants with DMD took part in a 36-week online literacy intervention which was delivered in partnership between home and school. The key objective was to improve reading skill. Participants were re-tested at 36 weeks for single word and text level reading, comprehension, fluency, processing and timed single word reading. Pre and post results indicated that children who followed the intervention for 36 weeks made significant improvement in their single word reading (p = <0.0001), timed single word reading (p = <0.0001) and text level reading (p = <0.004). They also made significant improvement in their fluency and comprehension scores. The results showed that children with DMD and related literacy difficulties benefit from a regular, structured and systematic synthetic phonics programme. With young people with DMD increasingly living into adulthood, early literacy intervention is particularly important to ensure optimum career and training opportunities

    Book Reviews

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    Accessible Housing Campaign Report

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    Individual Differences in Training Performance: The Derivation of a Prediction Model

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    This research examines the use of non-cognitive personality measures as supplements to traditional cognitive ability measures for predicting training performance. The Hogan Personality Inventory (HPI) significantly predicted an overall performance measure (R2 = .17) for Navy BE&E Students (N = 155). However, when applied as a supplemental predictor composite to the military cognitive measure (ASVAB), the resulting increase in R2 (.04) failed to attain significance, F(6, 144) = 2.17, p \u3e .05). In further analyses, several HPI and ASVAB scales combined to significantly predict selected performance criteria. The ASVAB remained as the primary source of information. It is quite possible that, for traditional academic training, cognitive ability measures provide the most valuable insight in terms of individual potential. Personality may have a more profound effect in cases of unconventional skill training or training for occupations of risk

    A new skink (Scincidae: Carlia) from the rainforest uplands of Cape Melville, north-east Australia

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    Carlia skinks are widespread in New Guinea, Wallacea, and northern and eastern Australia. Most Australian species occur in dry woodlands and savannas or marginal rainforest habitats associated with these. There are two rainforest species, parapatrically distributed in coastal mid-eastern Queensland (C. rhomboidalis) and the Wet Tropics of north-eastern Queensland (C. rubrigularis). These two sister species share a diagnostic morphological trait in having the interparietal scale fused to the frontoparietal. Here I describe a third species in this group, Carlia wundalthini sp. nov., from rainforest uplands of the Melville Range, a rainforest isolate 170 km north of the Wet Tropics. This species is diagnosable on male breeding colouration, morphometrics and scalation. The description of C. wundalthini sp. nov. brings the number of vertebrate species known to be endemic to the rainforest and boulder-fields of Cape Melville to seven. Carlia wundalthini sp. nov. is distinct among these endemics in being the only one that does not appear to be directly associated with rock, being found in rainforest leaf-litter

    High Powered Rocketry Emphasizing Dual-Deployment Recovery Systems

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    This paper outlines the overall project completed by MACH during the 2019-2020 school year to fulfill the requirements for EGR 498 and EGR 499 as well as the honors thesis requirements. The scope of the paper covers the design and construction of a high powered rocket as per the requirements set by the NASA Student Launch Competition, with a focus on components of dual-deployment recovery systems. Brainstorming, design, optimization, testing, re-design, and components of a high powered rocket are all discussed, though final testing remains incomplete due to complications from COVID-19. Simulation results and launch predictions are included to compensate for the lack of actual test data. The project was done under the mentorship of Dr. Terry McCreary (Ph.D. in Analytical Chemistry)
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