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.

Keywords::

• Communicative interaction
• Complex continuing care
• Biomusic
• Personhood

Acknowledgements

We are grateful to the caregivers and persons with PMD who participated in this project. We would also like to acknowledge Pierre Duez for his assistance with the development of the biomusic software.

Notes

1. Thought Technology: Thought Technology Ltd.; Montreal, PQ, Canada. www.thoughttechnology.com

2. NVivo software: QSR International; Melbourne, Australia; www.qsrinternational.com

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this paper.

This work was supported by the Norman Saunders Complex Care Initiative Grant administered by the Sick Kids Foundation.