51 research outputs found
Publish or perish?: presenting the work of junior archaeologists to a broader audience
We are very proud to present the first volume of INTER-SECTION: Innovative Approaches by Junior Archaeological Researchers! This journal emanates from the observation that student research which is carried out conform high theoretical and methodological standards is generally only read by a handful of people, as it is solely reported in theses and other written assignments. Often, however, such work would be a valuable contribution to the archaeological discourse and could provide ‘fresh’, innovative views on Archaeology as a discipline. Our aim is to make student research, carried out at the Faculty of Archaeology, Leiden University, available to a broader public by stimulating these junior archaeologists to write a short, focused article, counselled by a faculty teacher. Reviewing of these articles by renowned external specialists further aids in the amendment of these papers and provides an invaluable experience for a future academic career. INTER-SECTION is a platform where gathered knowledge of the past and innovative ambitions for the future meet, and are united to produce articles that appeal to a broad audience of archaeologists
3-years later… a reassessment of the need for something ‘in-between’
Welcome to the 2017 issue of INTER-SECTION: Innovative approaches by Junior Archaeological Researchers. In this issue, we present a total of five papers written by archaeology students in close collaboration with their academic referees, reflecting the wide range of both research and teaching at Leiden's Faculty of Archaeology from the the BA to the MA level
Visual impairments in people with severe and profound multiple disabilities: An inventory of visual functioning
Background: The prevalence of visual impairments in people with severe and profound multiple disabilities (SPMD) is the subject of considerable debate and is difficult to assess. Methods: In a typical Dutch care organization, all clients with SPMD (n = 76) participated in the study and specific instruments adapted to these clients (requiring a minimum of cooperation) were used to measure visual acuity, the visual field, binocular vision, contrast sensitivity, refractive errors and visual functioning behaviour. Results: We found an unexpected 92% of clients with SPMD to have visual impairments. Previously, only 30% were known to have visual problems. None of the persons observed had normal visual acuity. Subnormal visual acuity was the best result. The severity of the visual impairment was related to the severity of the intellectual disability. In addition to the problem of acuity, impairments in the visual field, impaired contrast sensibility and impaired binocular functioning were found, as well as impaired visual attention, fixation and following. In 22% of the clients observed, refractive errors were found and glasses were advised. Conclusions: Consequences for caregiving and for modifications of the environment were discussed. © 2006 Blackwell Publishing Ltd
Content and Quality of Motor Initiatives in the Support of People With Profound Intellectual and Multiple Disabilities
Motor activation is rarely integrated into the support of people with profound intellectual and multiple disabilities (PIMD), which might be the result of the limited evidence‐based knowledge in this field. Practitioners have recently been developing several motor initiatives for people with PIMD, but it remains unclear about what core elements the motor initiatives actually consist of and to what level of quality it is implemented in practice. This study aims to offer an overview and analysis of the content and quality of motor initiatives actually in use for people with PIMD. Motor initiatives were explored by asking practitioners to complete an online inventory form. Documents, expert knowledge, and observations were used to collect data about the characteristics of the motor initiatives. The quality of the motor initiatives which met our eligibility criteria, was analyzed on the basis of the level of evidence for their effectiveness. The inventory yielded 118 motor initiatives of which 17 met the eligibility criteria. We identified four motor initiatives reflecting an approach to motorically activate people with PIMD within various activities, three including power‐assisted exercises, three with aquatic exercises, two frameworks which integrated motor activities into their daily programs, two methods which included small‐scale activities, two rhythmic movement therapies, and one program including gross motor activities. We found limited indications for descriptive evidence from 17 initiatives, limited or no indications for theoretical evidence from 12 and five initiatives respectively, and none of the initiatives provided a causal level of evidence for effectiveness. A wide variety of motor initiatives is used in current practice to activate persons with PIMD, although their effectiveness is actually unproven. Science and practice should cooperate to develop an evidence‐based understanding to ensure more evidence‐based support for the motor activation of people with PIMD in the future
NEXMIF encephalopathy: an X-linked disorder with male and female phenotypic patterns
Purpose:
Pathogenic variants in the X-linked gene NEXMIF (previously KIAA2022) are associated with intellectual disability (ID), autism spectrum disorder, and epilepsy. We aimed to delineate the female and male phenotypic spectrum of NEXMIF encephalopathy.
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Methods:
Through an international collaboration, we analyzed the phenotypes and genotypes of 87 patients with NEXMIF encephalopathy.
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Results:
Sixty-three females and 24 males (46 new patients) with NEXMIF encephalopathy were studied, with 30 novel variants. Phenotypic features included developmental delay/ID in 86/87 (99%), seizures in 71/86 (83%) and multiple comorbidities. Generalized seizures predominated including myoclonic seizures and absence seizures (both 46/70, 66%), absence with eyelid myoclonia (17/70, 24%), and atonic seizures (30/70, 43%). Males had more severe developmental impairment; females had epilepsy more frequently, and varied from unaffected to severely affected. All NEXMIF pathogenic variants led to a premature stop codon or were deleterious structural variants. Most arose de novo, although X-linked segregation occurred for both sexes. Somatic mosaicism occurred in two males and a family with suspected parental mosaicism.
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Conclusion:
NEXMIF encephalopathy is an X-linked, generalized developmental and epileptic encephalopathy characterized by myoclonic–atonic epilepsy overlapping with eyelid myoclonia with absence. Some patients have developmental encephalopathy without epilepsy. Males have more severe developmental impairment. NEXMIF encephalopathy arises due to loss-of-function variants
LEARN 2 MOVE 0-2 years:effects of a new intervention program in infants at very high risk for cerebral palsy; a randomized controlled trial
Background: It is widely accepted that infants at risk for cerebral palsy need paediatric physiotherapy. However, there is little evidence for the efficacy of physiotherapeutic intervention. Recently, a new intervention program, COPCA (Coping with and Caring for infants with special needs - a family centered program), was developed. COPCA has educational and motor goals. A previous study indicated that the COPCA-approach is associated with better developmental outcomes for infants at high risk for developmental disorders. LEARN 2 MOVE 0-2 years evaluates the efficacy and the working mechanisms of the COPCA program in infants at very high risk for cerebral palsy in comparison to the efficacy of traditional infant physiotherapy in a randomized controlled trial. The objective is to evaluate the effects of both intervention programs on motor, cognitive and daily functioning of the child and the family and to get insight in the working elements of early intervention methods.Methods/design: Infants are included at the corrected age of 1 to 9 months and randomized into a group receiving COPCA and a group receiving traditional infant physiotherapy. Both interventions are given once a week during one year. Measurements are performed at baseline, during and after the intervention period and at the corrected age of 21 months. Primary outcome of the study is the Infant Motor Profile, a qualitative evaluation instrument of motor behaviour in infancy. Secondary measurements focus on activities and participation, body functions and structures, family functioning, quality of life and working mechanisms. To cope with the heterogeneity in physiotherapy, physiotherapeutic sessions are video-recorded three times (baseline, after 6 months and at the end of the intervention period). Physiotherapeutic actions will be quantified and related to outcome.Discussion: LEARN 2 MOVE 0-2 years evaluates and explores the effects of COPCA and TIP. Whatever the outcome of the project, it will improve our understanding of early intervention in children with cerebral palsy. Such knowledge is a prerequisite for tailor-made guidance of children with CP and their families.Trial registration: The trial is registered under NTR1428.</p
Aller Anfang is schwer
It is with great pleasure that we present to you the second volume of INTER-SECTION: Innovative Approaches by Junior Archaeological Researchers. This journal emanates from the observation that student research, which is carried out conforming to high theoretical and methodological standards, is generally only read by a handful of people. Our aim is to make student research performed at the Faculty of Archaeology, Leiden University, available to a broader public by stimulating these junior archaeologists to channelize their ‘fresh’ and innovative ideas and practice into short, focused articles. Reviews conducted by renowned external scholars further aid in the improvement of these papers and provide invaluable experience for a future academic career. The product of another cycle of writing, reviewing, rewriting and editing lies here in front of you. We wish you a happy and interesting read with our present volume
Operationalizing quality of life for people with profound multiple disabilities:a Delphi study
Background: In a recent study, we constructed an item pool that contains items on the quality of life (QOL) and related aspects of support of people with profound multiple disabilities (PMD). In the present study, a panel of experts assessed the content and the structure of this item pool in order to enhance its validity and usefulness. Method: A two-round Delphi study was set up. The panel consisted of 45 experts, of whom 12 were theory-experts, 12 practice-experts and 12 experience-experts from Belgium (n = 12), Germany (n = 12), the Netherlands (n = 11) and the UK/Ireland (n = 10). Both quantitative and qualitative methods of analysis were applied to the data. Results: The majority of the items were considered relevant for the QOL of people with PMD. In the first round, 91% of the items reached the 80% criterion of consensus. In the second round, 78.7% of the items reached the 85% criterion of consensus. There were no significant differences in opinion neither between types of experts nor between countries. Several items were reported as missing in the item pool and were added. Conclusion: The results provide some evidence that the item pool is a valid operationalization of QOL of people with PMD and can be used in an instrument to measure the QOL of this target group
Operationalizing quality of life for people with profound multiple disabilities: a Delphi study
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