Biomusic: A Novel Technology for Revealing the Personhood of People with Profound Multiple Disabilities

Abstract

It is often difficult for family members and caregivers to interact with persons with profound multiple disabilities (PMD) because of the severely compromised communicative repertoire of this population. The resulting communication challenges may limit the ability of others to perceive personhood in individuals with PMD. This preliminary study investigated the effects of music generated in real time from physiological signals (biomusic) on caregiver perceptions of their interactions with persons with PMD. Caregivers (n = 10; parents and clinical staff) engaged in four, 10-min interactions with a person with PMD (n = 3; diagnoses = traumatic brain injury, pervasive developmental disorder, hypoxic brain injury), whose biomusic was projected throughout. Caregivers participated in two open-ended, semi-structured interviews to explore the effect of biomusic on these interactions. Most caregiver responses to biomusic were very positive, and many reported that biomusic caused an improvement in their interaction with and perceptions of the person with PMD. By providing audible evidence of the changing physiological state of persons with PMD, biomusic may enhance the perceived personhood of these individuals and enrich interactions with their family members and caregivers.

Biomusic: An Auditory Interface for Detecting Physiological Indicators of Anxiety in Children

“…Even when cognitive function remains intact, many of these individuals are unable to communicate via traditional pathways (e.g., speech, gestures) and/or augmented and assisted communication (AAC) devices (Hogg et al, 2001) because of physical limitations. As such, it often falls to caregivers to decipher their preferences, intent, and emotions from sparse behavioral and contextual cues (Adams and Oliver, 2011; Blain-Moraes et al, 2013) that may be difficult to detect, non-obvious to those unfamiliar with the individual, and inconsistent/unavailable across individuals (Adams and Oliver, 2011). In the absence of a reliable communication pathway, the needs, thoughts, and feelings of those with profound disabilities are at risk of being overlooked, which presents concerning challenges to health and well-being (Blain-Moraes et al, 2013).…”

“…As such, it often falls to caregivers to decipher their preferences, intent, and emotions from sparse behavioral and contextual cues (Adams and Oliver, 2011; Blain-Moraes et al, 2013) that may be difficult to detect, non-obvious to those unfamiliar with the individual, and inconsistent/unavailable across individuals (Adams and Oliver, 2011). In the absence of a reliable communication pathway, the needs, thoughts, and feelings of those with profound disabilities are at risk of being overlooked, which presents concerning challenges to health and well-being (Blain-Moraes et al, 2013). This motivates the urgent need to establish communication channels with individuals with profound disabilities and methods for discerning their emotional states.…”

“…While visually-streamed physiological data demand continuous attention to interpret, Biomusic can provide caregivers with peripheral awareness of multiple physiological signals and trends while preoccupied with other aspects of care (Blain-Moraes et al, 2013). In a systematic review, Dubus and Bresin (2013) identified and categorized 7 sonification projects as having the primary purpose of “monitoring.” This suggests the utility of an auditory medium such as Biomusic to convey continuous, real-time information to an attentive listener.…”

“…Biomusic has been successfully demonstrated in a clinical care context to augment communication between caregivers and children with profound disabilities by increasing a sense of reciprocity and co-presence, two fundamental qualities of human interaction (Blain-Moraes et al, 2013). Anecdotally, caregivers in this study noticed changes in the sound and quality of Biomusic that appeared to be associated with their interactions with the children.…”

Effectiveness of Music Therapy on Social Skill Growth in Educable Intellectual Disability Boys

“…Therefore music has been used for treatment of medical and psychiatric disorders [8] [9]. Some of the most common psychiatric disorders that are treated with music therapy are pain, grief, anxiety, and relationship issues [10]- [12]. Music therapy can regulate the mood and decrease pain by releasing endorphins [13] [14].…”