Yet when Holland Bloorview scientist Amy McPherson looked at a systematic review of studies about obesity prevention in kids, most excluded those with disabilities.
“If you’re testing a new way to get kids active, you may shy away from recruiting kids who physically struggle because that will affect the data,” Amy says. “It may be less likely to show your intervention can work. But if we exclude children with disabilities from these studies, how will we develop interventions for them?”
One way to raise awareness of pediatric rehab research, which is a young field, is to send papers to general medical and clinical journals, rather than just disability journals, Amy says. But it’s not easy to get a paper accepted.
Comments from expert reviewers, who assess the rigour of a paper, often reflect a lack of understanding about the unique challenges and opportunities of disability research.
“For example, a reviewer recently suggested a colleague exclude children who are not verbal from her study, instead of relying on parent reports,” Amy says. “But these are our patients. If we’re developing interventions, we can’t cherry pick patients. We can’t inform change if we don’t take diversity into account.”
A common reviewer criticism is that a study doesn’t use outcome measures that have been tested on children with disabilities. “But most measures are developed for typical kids,” Amy says. “When we try to develop ones for our kids, we’re told the numbers are too low. We’re caught between a rock and a hard place.”
Amy notes that reviewer comments sometimes reflect the expert’s own biases. For example, she submitted a paper on a study to evaluate the effectiveness of coaching to improve diet and physical activity in boys and men with Duchenne muscular dystrophy.
One reviewer said that to ask participants to identify a “preferred future,” which was one part of the intervention, was callous, because the condition is degenerative.
“We were enrolling kids aged 10 to 19, and people with Duchenne can live till their '30s these days. Health and wellness coaching is important for everyone, especially those with a disability. We want to empower clients to identify personally meaningful goals, hopes and aspirations for the future. Whatever it looks like, young people with disabilities have a life. They deserve to get the best possible care, and we do that through research.”
One way to gain acceptance into mainstream journals is to partner with a wide variety of clinicians and researchers across disciplines, Amy says.
Getting her national, call-to-action paper on weight in children with disabilities published in Childhood Obesity—a prominent, mainstream obesity journal—is an example.
“This paper was the result of efforts from people across many disciplines, life experiences and backgrounds,” Amy says. “Collaborations like this show the broader implications that disability research can have. For example, learning how to best support kids with a wide range of abilities to lead healthy lifestyles can be useful for those working with typically developing kids who benefit from a more individualized approach. It can also support doctors who may only see one or two kids with disabilities a year and wouldn’t routinely look at the rehabilitation literature."
Amy says we need to continue advocating within the broader science community to find common ground in research on children with and without disabilities.
“Sometimes when we submit a paper to a journal or present at a conference, we get responses that question the value of doing research in kids with disabilities. Our sample sizes are small. Our kids are a different population, but there are ways to include them, or to report the data differently. As researchers, we have a shared accountability to make a difference in the lives of children with and without disabilities.”