Analysis of How People with Intellectual Disabilities Organize Information Using Computerized Guidance

International audienceAccess to residential settings for people with intellectual disabilities (ID) contributes to their social participation, but presents particular challenges. Assistive technologies can help people perform activities of daily living. However, the majority of the computerized solutions offered use guidance modes with a fixed, unchanging sequencing that leaves little room for self-determination to emerge. The objective of the project was to develop a flexible guidance mode and to test it with participants, to describe their information organization methods. This research used a descriptive exploratory design and conducted a comparison between five participants with ID and five participants with no ID. The results showed a difference in the information organization methods for both categories of participants. The people with ID used more diversified organization methods (categorical, schematic, action-directed) than the neurotypical participants (visual, action-directed). These organization methods varied depending on the people, but also on the characteristics of the requested task. Furthermore, several people with ID presented difficulties when switching from virtual to real mode. These results demonstrate the importance of developing flexible guidance modes adapted to the users’ cognitive strategies, to maximize their benefits. Studies using experimental designs will have to be conducted to determine the impacts of more-flexible guidance modes

Trajectoires d’une innovation en services sociaux : l’intervention techoclinique

L’omniprésence des technologies dans la société affecte grandement la vie des personnes présentant une déficience intellectuelle (DI) ou un trouble du spectre de l’autisme (TSA). En plus d’être désormais nécessaires pour une participation sociale optimale (services en ligne, paiements électroniques, etc.), elles peuvent être utilisées comme outils d’intervention clinique. Toutefois, leur intégration dans le réseau de la santé et des services sociaux (RSSS) représente une innovation pour les organisations. C’est à travers une méthode de recherche qualitative et collaborative que le recherche a été menée afin de décrire le processus d’adaptation organisationnelle lors du déploiement de l’intervention technoclinique dans certains programmes-services en DI-TSA québécois tel que vécu par les acteurs clés. Les résultats démontrent l’ampleur du déséquilibre vécu et que la prise en compte des perceptions des acteurs qui vivent le changement favorise une description riche et approfondie du phénomène.The pervasiveness of technology in society greatly affects the lives of people with intellectual disability (ID) and autism spectrum disorders (ASD). In addition to being now necessary for optimal social participation (online services, electronic payments, etc.), they can be used as clinical intervention tools. However, their integration into the Health and Social Services Network represents an innovation for organizations. Using a qualitative and collaborative research method, the research was conducted to describe the organizational adaptation process during the deployment of technoclinical intervention in certain Quebec ID-ASD service programs as experienced by key players. The results show the extent of the imbalance experienced and that taking into account the perceptions of the actors who are experiencing change promotes a rich and in-depth description of the phenomenon

La recherche qualitative : le vecteur d’une innovation sociale et organisationnelle destinée aux personnes présentant une déficience intellectuelle ou un trouble du spectre de l’autisme

Dans une société où les changements surviennent à une vitesse fulgurante, les acteurs et les organisations se retrouvent constamment en processus d’adaptation face à de nouvelles pratiques permettant d’améliorer les services à la clientèle. Celles-ci doivent être documentées et peuvent bénéficier de la perspective des acteurs qui les vivent. Dans ce contexte, le propos ci-dessous présente la contribution de la recherche qualitative dans le déploiement d’une innovation, en s’intéressant à la perspective des acteurs, qu’ils soient des membres du personnel ou de la clientèle. Puis, à travers les différents aspects méthodologiques, la place stratégique que peuvent occuper les personnes présentant une déficience intellectuelle ou un trouble du spectre de l’autisme dans le déploiement d’une pratique novatrice leur étant destinée montrée, soit l’intervention technoclinique.In a society where change is happening at lightning speed, actors and organizations are constantly in the process of adapting to new practices to improve customer service. These must be documented and can benefit from the perspective of the actors who live them. In this context, the following article presents the contribution of qualitative research in the deployment of an innovation, focusing on the perspective of the actors, whether they are staff members or customers. Then, through different methodological aspects, we demonstrate the strategic place that can exert people with intellectual disability or autism spectrum disorder in the deployment of an innovative practice for them, the technoclinical intervention

Les robots et l'intervention en déficience intellectuelle et trouble du spectre de l’autisme : enjeux cliniques, technologiques et de gestion

À l’heure actuelle, les robots sociaux représentent une innovation sociale dans le secteur de l’intervention auprès des personnes présentant une déficience intellectuelle (DI) ou un trouble du spectre de l’autisme (TSA). Toutefois, pour assurer leur déploiement optimal en intervention, il convient de réaliser une analyse de certaines dimensions. L'article réalise cette analyse en s'appuyant sur le MAP2S. Au niveau clinique des impacts positifs sont observés sur plusieurs dimensions. Au niveau technologique, des caractéristiques à considérer lors du choix du robot sont identifiées. Au niveau de la gestion, les couts et la compatibilité technique constituent des éléments considérés. En somme, la recherche devra poursuivre les travaux dans le domaine et aussi documenter les enjeux associés à l'utilisation de tels outils d'intervention.Currently, social robots are an innovation in the field of autism spectrum disorder intervention. However, optimal implementation must take many factors into account.  The article analyzes studies in this field based on the MAP2S model. Positive impacts are observed over several clinical dimensions. Technological features to consider when choosing the robot are identified. At the management level, costs and technical compatibility must be addressed. Future research is needed to provide more results on the applicability of this technology

Bridging the digital divide for people with intellectual disability

Recent data from several studies and surveys confirm that our society has entered the digital and information age. Some authors mention that information and communication technologies (ICT) have the potential to enhance people’s power to act and promote equal citizen participation. These elements are particularly important for people living with intellectual disability (ID). However, it seems that the use of ICT is challenging for these people and that a digital divide has gradually formed between them and the connected citizen. The general objective of this theoretical article is to identify and illustrate the dimensions that must be taken into account to promote the digital participation of people with ID. The model is based on a qualitative analysis of scientific publications using a conceptual-style matrix (Miles & Huberman, 2003). The coding categories were derived from two main sources: the accessibility pyramid and the Human Development Model - Disability Creation Process. Five challenges or conditions associated with digital inclusion were identified: access to digital devices, sensorimotor, cognitive and technical requierements and the comprehension of codes and conventions. For each one, the obstacles and facilitators identified in the literature are described. These reflections and principles led us to propose a model in the shape of a gear. The proper operation of the gear system depends on the fit between individual resources and environmental support. The model is a first step to understand the digital inclusion of people with ID

Modélisation soutenant l’inclusion numérique des personnes présentant une DI ou un TSA

Notre société numérique offre de nombreux avantages à bon nombre de citoyens. Cependant, les personnes qui présentent une déficience intellectuelle (DI) ou un trouble du spectre de l’autisme (TSA) doivent interagir avec un environnement numérique commun à l’ensemble des citoyens et inadapté à leurs besoins. Cette situation réfère à l’exclusion numérique. Malheureusement, peu de modèles sont disponibles afin de guider les intervenants et les chercheurs sur les moyens à mettre en place pour promouvoir une utilisation efficace et optimale des technologies par ces personnes. Notre équipe a développé une première modélisation des différents enjeux, représentée par une « pyramide d’accessibilité numérique ». En plus de bien identifier les éléments à prendre en compte lors de l’intervention technoclinique, la pyramide offre quelques pistes de solution pour promouvoir l’accessibilité à ces technologies.Our digital society contributes to social participation of many citizens. However, people with intellectual disability (ID) or autism spectrum disorder (ASD) must interact with a common digital environment unsuited to their needs. This fact refers to the digital exclusion. Unfortunately, in the field of ID and ASD few models are available to guide practitioners and researchers in the implementation of these technologies. Our team has developed a model presenting and integrating the challenges associated with their use. The pyramid of digital accessibility clearly identifies the dimensions that promote digital inclusion of these populations

The Fanconi Anemia Core Complex Acts as a Transcriptional Co-regulator in Hairy Enhancer of Split 1 Signaling*S⃞

Mutations in one of the 13 Fanconi anemia (FA) genes cause a progressive bone marrow failure disorder associated with developmental abnormalities and a predisposition to cancer. Although FA has been defined as a DNA repair disease based on the hypersensitivity of patient cells to DNA cross-linking agents, FA patients develop various developmental defects such as skeletal abnormalities, microphthalmia, and endocrine abnormalities that may be linked to transcriptional defects. Recently, we reported that the FA core complex interacts with the transcriptional repressor Hairy Enhancer of Split 1 (HES1) suggesting that the core complex plays a role in transcription. Here we show that the FA core complex contributes to transcriptional regulation of HES1-responsive genes, including HES1 and the cyclin-dependent kinase inhibitor p21cip1/waf1. Chromatin immunoprecipitation studies show that the FA core complex interacts with the HES1 promoter but not the p21cip1/waf1 promoter. Furthermore, we show that the FA core complex interferes with HES1 binding to the co-repressor transducin-like-Enhancer of Split, suggesting that the core complex affects transcription both directly and indirectly. Taken together these data suggest a novel function of the FA core complex in transcriptional regulation