Imagine never knowing how a loved one was feeling, what they wanted to say or if they could even hear you. For parents of children with severe disabilities, it's an all too real scenario filled with frustrating questions and too few answers.
But some Toronto researchers hope science will one day shed light on those questions, and are taking small steps toward giving a voice to children who don't have one.
A team of researchers at Bloorview Kids Rehab, the largest children's rehabilitation hospital in the country, have discovered that children with severe disabilities, including some who can't communicate physically or verbally, reacted physiologically when watching a performance by a clown.
They found that non-communicative and other disabled children had changes in heart and breathing rates, skin temperature and sweat levels during 10-minute visits with therapeutic clowns. The children didn't have the same reaction when watching a children's television program, which demonstrates an ability to perceive their environment and make different responses depending on the situation they're in, according to the researchers.
It's a discovery that could eventually help open communication channels with people who have trouble communicating physically or verbally. And it also provides some validation for families who have always been convinced their loved one is present mentally, but unable to show it.
"The parents just want to know that they're there," said Stefanie Blain, a PhD student at Bloorview Kids and one of the study's authors. "Getting a…physiological response to something in the environment is an incredible sign because they're not just bodies in the bed, they are perceiving their environment, they are responding to their environment."
The findings were collected and published online earlier this month in the journal Evidence-based Complementary and Alternative Medicine.
Therapeutic clowns, a group of trained professionals who work at Bloorview and a handful of other hospitals across Canada, entertain children and also design performances to help provide patients with a sense of control while they're in the hospital.
The study was actually launched after one of the therapeutic clowns at Bloorview approached researchers with the idea of trying to determine what type of effect they had on patients in order to improve and enhance their performances.
"It just really fascinated me and I thought it's a great opportunity for this profession," said Jamie Burnett, a therapeutic clown who has been at Bloorview for several years.
The number of children involved in the study is small. And it's difficult, if not impossible, for researchers to determine at this point exactly what the physiological responses mean.
But the ability to demonstrate that profoundly disabled children who can't communicate can react to physical stimuli around them holds major potential for future breakthroughs.
"What we hope is this gives us the key to unlock the thoughts of these children," Ms. Blain said.
There were eight Bloorview patients involved in the study, ranging in age from four to 21 and living with conditions such as major brain injuries, neuromuscular disorders or severe cerebral palsy. While five of the patients could speak and use facial expressions, there were two patients who couldn't speak and one who was unable to communicate in any way.
After studying the group for four days, the researchers found a marked physiological response from the patients, even among those who couldn't speak, when they had 10-minute visits by the therapeutic clowns. In fact, researchers thought the non-communicative patient was asleep when the clown was present, but they could see through changes in heart rate, body temperature and other physiological markers that the child was responding to the clown.
Researchers also measured the response to a children's television show and found patients didn't have the same reaction.
"We're a long way off, but the idea that you might be able to tap into and measure a person's physiological responses and use that information to determine their preferences for them to be able to potentially control those responses to indicate yes and no has wide-reaching implications for how we might be able to just open the doors for everybody to communicate," said Shauna Kingsnorth, post-doctoral fellow in the participation and inclusion research at the hospital's Bloorview Research Institute.