Imagine your child can’t communicate with you. For parents and caregivers of children with profound multiple disabilities, or PMD, this is a daily challenge. Communication issues can make it difficult to interact with children with PMD, even making it hard for those who take care of the child to perceive him or her as a person.
Now imagine you could hear music generated by that child that reflects his body signals. Would “biomusic” help strengthen the connection between a child with PMD and his caregiver?
That’s what Dr. Patricia McKeever and a team of researchers set out to learn with biomusic in a small study conducted by the Bloorview Research Institute at Holland Bloorview Kids Rehabilitation Hospital. Biomusic is a novel technology that translates real-time autonomic nervous system signals including heart and breathing rates and skin temperature, into musical sounds. The team’s research, funded by a Norman Saunders Complex Continuing Care Grant from Sick Kids Foundation, sought to determine whether biomusic could change caregivers’ perceptions of their interactions with children with PMD.
The researchers were happy to find that by providing audible evidence of the changing physiological state of children with PMD, biomusic seemed to enhance the perceived personhood of these children and enrich interactions with their parents and caregivers.
Three children and their families, plus seven staff from Complex Continuing Care took part in the research study.
Special equipment collected body signals from each child using non-invasive electrodes on the hands, and a customized computer program transformed those signals into biomusic. Each child’s biomusic was played over several visits with their different caregivers.
Following each visit, parents and caregivers were interviewed about their relationships with the children, and impressions of how biomusic affected their interactions.
Most parents and caregivers described their interactions before listening to biomusic as affectionate and warm, demonstrating that these young people were valued and cherished. Yet the frustration and the uncertainty associated with not knowing what these children were thinking or feeling was a clear challenge faced by all.
In both clinical and parental encounters, study participants valued the transformation of body signals into musical sounds because the sounds seemed to enhance interpersonal interaction.
The biomusic also seemed to change how parents and caregivers viewed the children. One participant said “Sometimes, we forget as caregivers…we just kind of [don’t] look at the person, and just do what we have to do. [Biomusic] make us step back and actually think…‘Okay, so this is a person.’”
Most study participants predicted that regular exposure to biomusic could have significant and positive effects on the quality of their interactions.
Helen Donnelly worked as a therapeutic clown with one of the children in the study, and enjoyed hearing his biomusic. “The whole experience was valuable because it looked at enhancing the quality of time we spend with this client, this playmate. With my client, it added a refreshing element which assisted us as artists in our imaginative play with him. Story lines and bits of song were woven into his biosong and made the experience richer.”
Based on these positive findings, lead author Stefanie Blain-Moraes says the team is excited to find future applications for biomusic. “Since the biomusic technology enables us to ‘tune in’ to the physiological reactions of non-communicative individuals, we hope it may eventually be used to improve the interactions with and the quality of life of some of the most vulnerable members of society.”
This work was recently published in Augmentative and Alternative Communication. For more information, contact Dr. Shauna Kingsnorth at the Holland Bloorview Kids Rehabilitation Hospital at firstname.lastname@example.org.
About Holland Bloorview Kids Rehabilitation Hospital
Holland Bloorview Kids Rehabilitation Hospital is Canada’s largest children’s rehabilitation hospital, fully affiliated with the University of Toronto. We pioneer treatments, technologies, therapies and real-world programs that give children with disabilities the tools to participate fully in life. Every year, we see about 7,000 children with about 600 inpatient admissions and 58,000 outpatient visits.