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Section: Computer Science and Engineering
Tutor: BONARINI ANDREA Major Research topic
:Empowering Interactive Technologies for Children with Neuro-Developmental Disorders and their Caregivers.
The Empowerment Framework for Adoption, Appropriation and Diffusion.
Advisor: GARZOTTO FRANCAAbstract:
Disability affects nowadays hundreds of millions of families and currently around 1.3 per cent of the total world's population, or roughly 97 million people, live with a Neuro-Developmental Disorder (NDD) [CDC, 2016].
NDD is an umbrella term for a group of disorders arising during the developmental period and characterized by severe often co-occurring deficits in the cognitive, social, communicative, motor, behavioral and emotional spheres [DSMV]. NDD includes, among other disorders, Intellectual Disability, Attention Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD) and Down Syndrome. The disorder profoundly affects the capability of adaptive behavior and the basic skills needed in everyday life resulting in an enormous medical, educational and social cost: both in Europe and US is estimated to be 798 billion € and 760 billion $ per year respectively [CDC 2016, olesen2012economic].
NDD has an incurable nature and little is known about its causes but what is generally acknowledged is the importance of early diagnosis and interventions that lead to potential improved outcomes [dawson1997early]. In this perspective, the use of digital interactive technology is regarded as a promising approach that does not replace current therapies but can be incorporated into them and can support the caregivers in their daily routine. Various studies pinpoint that interactive technologies not only lighten caregiver load [nicolson2012impact] but are also attracting and motivating for NDD subjects: they are predictable, controllable, repetitive and safe in their interactions offering multimodal and multisensory stimulations to engage children and foster learning progress and mastery [CONNECTH24].
From a socio-economical point of view, the rapid growth of these resources requires a carefully planned response by health institutions and their administrators. In addition to relevant staff development and training, this response urges to address the cost of technological resources applicable; the individuals’ unique needs with which those resources will be most useful; the benefits and risks of using them; the methods for preparing care-givers (clinicians and families) to accept, adopt and appropriate these resources; and an organizational commitment to empirically evaluating their effectiveness and utility.
This work aims at addressing the previous issues by developing the “empowerment framework” in order to offer individuals in the NDD domain the technological tools, services, and opportunities to feel empowered while using innovative interactive technologies, adapting them to meet their needs in a process called "appropriation", and diffuse their acquired knowledge, original technological approaches, and evidence-based results through a knowledge-based system.
My contributions lie in the "empowerment framework", a framework that offers a space so that health institutions, administrators, clinicians, parents and eventually external stakeholders can contribute in it. Using the framework, they will get access to i) a portable, accessible, modular and scalable software platform that will enable them to collaborate with partners in designing, developing, configuring, evaluating and sharing the activities through the web, building a new model of social crowd-sourcing; ii) adoption and sustainability guidelines to provide caregivers with the information they need to integrate and expand the use of technologies in their contexts; iii) a broad set of evidence-based design guidelines organized by interaction paradigm and informed by the literature and by the experience gained through the years; iv) a model of intervention co-developed with specialists in many tech-based studies. The given contributions will then be investigated under social, technical, marketing and economic lenses so to better respond to the different needs of the various stakeholders.
Disability nowadays no longer means a condition, an incapacity, or lack that belongs to a body, but rather a product of the interactions between self, society, body, and the variety of interactions from political economies to personal and society commitments that they engender. My work aimed at empowering us to better track, manage, and improve NDD individuals and caregivers live better, more productive lives, and improve society. It has also a potential to reduce inefficiencies in healthcare delivery, improve access, reduce costs, increase quality, and make therapy more personalized, sharable and precise.
Our society faces several fundamental challenges, which are highlighted within my work. How will society provide affordable and accessible technological-based healthcare aids that promote good health and maximize societal participation and inclusiveness for people with disability? In which way society will offer the right tools to improve equal opportunities, increase autonomy and reduce barriers? Under which circumstances and through which tools society will demand that all levels of government invest in more research, the improved coordination of research, and the need for the enhanced empirical results of disability-related research? The answers to these questions will undoubtedly define the future of disability and leave lasting legacies for future generations.