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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Getting To(wards) Know(ing) Together: An Innovative Collaborative Approach in Residential Care for People with
Gustaaf F Bos1, Vanessa C Olivier-Pijpers2, Alistair R Niemeijer1
1Department of Care Ethics, University of Humanistic Studies, Postbus 797, 3500 AT Utrecht, The Netherlands.
Abstract:
People with moderate to severe intellectual disabilities (M/S ID) and behaviour that challenges are still almost exclusively encountered and understood within a highly specialized professional care system context. They are almost invisible in the societal mainstream, where a wider variety of perspectives on (everyday) manners, encounters, relationships and life applies. These (and other) exclusionary dynamics render everyday relations with residents with M/S ID whose behaviours challenge still largely dependent on the interpretative frameworks and actions of professionals. Professionals are trained and socialized within highly specialized professional care system contexts, despite a growing scientific and professional awareness that behaviour that challenges is a multifaceted and contextual phenomenon. In this paper, we report on a pioneering initiative (titled Project WAVE) which aimed to cultivate a fresh and comprehensive approach to behaviours that challenge within stagnant care practices. Our goal was to foster an innovative collaborative paradigm by facilitating an extensive and enduring exchange between "insiders"-professionals of specialized care system contexts-and "outsider-researchers"-individuals socialized through alternative avenues. We present our epistemological and methodological approach, the data collection process (a multiple case-informed community of practice), and the most important lessons learned.
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