The detection of significant moments can support the care of individuals with dementia by making visible what is most meaningful to them and maintaining a sense of interpersonal connection. We present a novel intelligent assistive technology (IAT) for the detection of significant moments based on patterns of physiological signal changes in individuals with dementia and their caregivers. The parameters of the IAT are tailored to each individual's idiosyncratic physiological response patterns through an iterative process of incorporating subjective feedback on videos extracted from candidate significant moments identified through the IAT algorithm. The IAT was tested on three dyads (individual with dementia and their primary caregiver) during an eight-week movement program. Upon completion of the program, the IAT identified distinct, personal characteristics of physiological responsiveness in each participant. Tailored algorithms could detect moments of significance experienced by either member of the dyad with an agreement with subjective reports of 70%. These moments were constituted by both physical and emotional significances (e.g., experiences of pain or anxiety) and interpersonal significance (e.g., moments of heighted connection). We provide a freely available MATLAB toolbox with the IAT software in hopes that the assistive technology community can benefit from and contribute to these tools for understanding the subjective experiences of individuals with dementia.
IntroductionDifferences in sensory processing were linked to a diagnosis of autism spectrum disorder (ASD) before its inclusion as a core characteristic in the revised DSM-V. Yet, research focused on sensory processing and meaningful participation of children and youth with ASD remains relatively scarce. Although refinement of the International Classification of Functioning and Disability (ICF) relies on first-person accounts, longitudinal studies that foreground sensory experiences and its impact on involvement in a life situation from first-person perspectives are largely missing from this body of research.ObjectivesIn this sub-study, we drew from a longitudinal participatory research project consisting of two separately funded studies with children and youth with ASD and their families between 2014 and 2021. The participatory project used photovoice (PV) methods to identify the primary concerns related to socio-spatial exclusion (PV-1) and the action steps needed to redress them (PV-2). The objective of this sub-study was to understand what really mattered to children with autism, their parents, autistic youth and an adult mentor to consider how their experiential knowledge could deepen understanding of meaningful participation.Materials and MethodsWe used an overarching narrative phenomenological and aesthetic theoretical framework to focus data analysis on the bodily sensing experiences related to significant moments or events, followed by an inductive thematic analysis of what mattered about those moments.ResultsThe topical areas of concern that emerged from analyses were: (1) the relationship between sensory experiences and mental health (motion madness); (2) the indivisibility or layering of sensory and social experiences (squishing and squeezing); (3) the impact when “tricks” to stay involved are categorically misunderstood (When you don’t respond in the correct way), and (4) how care and consideration of others can lead to innovative solutions for inclusion (I can’t be the only one). Listening to the bodily-sensing experiences of children with ASD, autistic youth and adults, and their families in their own terms has implications for remapping the ICF and envisioning sensory curb-cuts to access, initiate and sustain occupational participation for all.
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