4 research outputs found

    La conception d'un clavier numérique conçu par des enseignants en mathématiques et des ergothérapeutes, peut-elle favoriser son adoption par des élèves en situation de handicap : le cas de HandiMathKey

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    National audienceLes aides techniques sont souvent peu appropriées voir abandonnées en raison du manque de l’inclusion des utilisateurs finaux surtout dans le domaine de l’éducation inclusive (Federici et al., 2016). Un clavier numérique de saisie mathématiques, HandiMathKey (HMK), a été conçu en mettant en œuvre une méthode de co-conception dans laquelle les enseignants et les ergothérapeutes ont exprimé les demandes d’une telle innovation sur la base de leur expertise, partant du constat des difficultés des jeunes adolescents scolarisés pour la production d’écrits mathématiques. L’objet de notre papier est de décrire la méthode de conception et de recenser les critères d’adoption de cette innovation à partir d’observations d’utilisation de HMK au sein du Centre Jean Lagarde.Les observations par les ergothérapeutes de l’ASEI ont montré que les éditeurs d’équations (Microsoft Office, Open Office) présentent de nombreuses limites pour les élèves avec des troubles moteurs ou dys. La saisie dans ces éditeurs s’est avérée exigeante tant au niveau fonctionnel (trouble moteur) qu’au niveau cognitif (attentionnel, visuo-spatial, mémoire) et générateur d’une fatigabilité à chaque niveau pour peu de gain productif et efficace

    Associations between cognitive performance and the rehabilitation, medical care and social support provided to French children with Prader-Willi syndrome

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    International audiencePrader-Willi syndrome (PWS) is a rare genetic neurodevelopmental disorder with a characteristic behavioural phenotype. A multidisciplinary approach to care is required to prevent multiple medical complications in individuals affected by PWS. The aim of this study was to describe the rehabilitation, medical care, educational and social support provided to school-aged French PWS patients with varying neuropsychological profiles. Data were obtained from a French multicentre study that included patients aged 4-20 years with diverse genetic syndromes. Nineteen PWS subjects with a mean age of 9.2 years were included. The mean full-scale intellectual quotient (IQ) was 58 (Wechsler scale). There were frequent dissociations between verbal and performance IQ that were not associated with a specific profile. We also observed lower autonomy and communication scores (5.3 years and 5.9 years equivalent, respectively, Vineland scale), the absence of hyperactivity (Conners scale), and the presence of behavioural abnormalities (CBCL scale). Multidisciplinary medical supervision was generally coordinated by the paediatric endocrinologist and did not always include follow-up with all of the recommended specialists, in particular with a paediatric psychiatrist. Analysis of multidisciplinary rehabilitation conducted in public and private-sector establishment revealed failings in psychological support, occupational therapy and dietary follow-up. Regarding education, most children younger than 10 years were in normal schools, while older individuals were often cared for in medico-social institutions. In conclusion, children and adolescents with PWS generally received appropriate care. Though there have been considerable improvements in the management of children with PWS, reference centres should continue reinforcing the coordination of multidisciplinary supervision

    Care management in a French cohort with down syndrome from the AnDDI-Rares/CNSA study

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    Down syndrome (DS) is a genetic neurodevelopmental disorder. In individuals with DS, a multidisciplinary approach to care is required to prevent multiple medical complications. The aim of this study was to describe the rehabilitation, medical care, and educational and social support provided to school-aged French DS patients with varying neuropsychological profiles. A mixed study was conducted. Quantitative data were obtained from a French multicentre study that included patients aged 4-20 years with diverse genetic syndromes. Qualitative data were collected by semi-structured face-to-face interviews and focus groups. Ninety-five DS subjects with a mean age of 10.9 years were included. Sixty-six per cent had a moderate intellectual disability (ID) and 18.9% had a severe ID. Medical supervision was generally multidisciplinary but access to medical specialists was often difficult. In terms of education, 94% of children under the age of six were in typical classes. After the age of 15, 75% were in medico-social institutions. Analysis of multidisciplinary rehabilitation conducted in the public and private sectors revealed failure to access physiotherapy, psychomotor therapy and occupational therapy, but not speech therapy. The main barrier encountered by patients was the difficulty accessing appropriate facilities due to a lack of space and long waiting lists. In conclusion, children and adolescents with DS generally received appropriate care. Though the management of children with DS has been improved considerably, access to health facilities remains inadequate
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