When Brandie Thomas was in the hospital with her young son Mason, a heart transplant recipient, she felt conflicted about holding him down during painful procedures.
"As a parent, you are the one who is supposed to be protecting your child and you wonder what their mindset is when you're part of the team doing this," she said. "He would feel an alcohol swab, then the tourniquet on his arm and he would know what was happening next. He was already screaming before they even touched him."
Mason was born with only half of his heart functioning properly and had his first surgery when he was three days old. He endured another surgery several months later and received a new heart shortly after he turned six.
But that wasn't the end. After the transplant, he needed blood to be drawn every day by a certain time and, because his veins were damaged, it was more painful and would sometimes require up to six attempts. Mason also had circulation problems and his oxygen levels would drop during his screams.
"I had to work very hard at staying calm so that my reaction didn't make everything worse. The ordeals would leave our whole family exhausted," she said.
Canada is a world leader in children's pain research, yet an estimated two-thirds of children in hospital-like Mason-experience painful procedures without any management.
Solutions for Kids in Pain, SKIP for short, is a new national initiative coming to Alberta that aims to improve children's pain care by bridging the gap between current approaches and available evidence-based solutions. The unprecedented collaboration between researchers, hospitals, patients and families will tackle the 17 to 21 years it typically takes for new research findings to be put into practice and help kids.
"As we were developing all this knowledge across Canada and around the world, it became abundantly clear that it wasn't always translated into practice-even in my own institution where they were very supportive of what I was doing," said Samina Ali, SKIP's Western Canadian hub lead who is a medical researcher at the University of Alberta and a pediatric emergency physician at the Stollery Children's Hospital.
Parent resources to help kids in pain |
"That led to a really natural stepping stone into looking at what we call knowledge mobilization, putting research into practice."
Ali, who has been studying pediatric pain for over a decade, said that not properly managing children's pain can lead to significant short- and long-term effects for both individuals and the health-care system.
"In the short term, I can't get the procedure done in a timely fashion because the child is wriggling all over the bed, they're crying, we have to take breaks, the parents are upset. These are things that slow the process down and we may have to repeat the procedure," she explained, adding that it affects efficiency and cost for the health-care system.
"That's the least important thing, though. Much more important than that is the child. Pain that isn't treated well harms children's brains and bodies."
Some kids develop a lifelong fear of doctors, nurses and hospital settings as a result of their experiences. It makes necessary appointments distressing events for both children and their parents. Children can also suffer more serious psychological injury from untreated pain, where they remember and relive it.
"It leaves mental scars, even if they can get through the procedure, and it stays with them," said Thomas, thinking back on her own experiences with her son Mason.
According to Ali, untreated pain can also set kids up to misuse health care, even as adults. If they are told that a procedure won't hurt or their pain isn't that bad, they learn not to trust their instincts.
"There is this phenomenon of either overuse or underuse of health care that can happen when you're not reading your body's cues well. People either show up at their doctor's office for everything, because they don't trust their instinct, or they show up for nothing because they dismiss it," explained Ali.
She added that it can put families at risk or increase health-care costs. Untreated pain in childhood also can lead to a higher risk of chronic pain in adulthood and be a factor in addiction.
While research has shown the negative and long-lasting impacts of not properly treating children's pain, it has also shown relatively simple and cost-effective solutions.
Strategies include breastfeeding infants during a procedure, maintaining skin-to-skin contact, providing sucrose solutions (sugar), teaching older children distraction and relaxation techniques, and applying numbing cream.
So why are we not helping kids more?
Ali said new knowledge about children's pain management isn't regularly put into practice for several reasons. Her research surveyed health-care professionals and families to ask why they don't do more to address children's pain. Respondents said they're not always sure what to do or don't know how to integrate the new practices into current systems. Front-line health-care providers also often face multiple competing interests.
"In the ER, I may have 10 patients at the same time. Three of them may be sicker than the one I am seeing right now, so I may forget or run out of time to ask if I can apply the topical anesthetic or get our child life specialist in the room to assist," said Ali.
With the help of SKIP, she envisions a new scenario where not only health-care professionals have the information and tools at hand, but patients and families are also knowledgeable about best practices in pain management and can advocate for their child in the moment.
"I guarantee 100 per cent that if I forgot to offer pain solutions and a parent requested numbing cream-and they'd point to a SKIP numbing cream poster on the wall-that there is no way I will say no," asserted Ali.
Ali views building knowledge with parents as sharing the responsibility of helping to manage children's pain, but also empowering them so they feel they have a positive role in their child's experience.
Thomas wholeheartedly agrees.
"When I'd see Mason crying or suspect he was in pain, I was sometimes scared to make the people helping us mad. I didn't want to come across as being demanding when you're really grateful for the care you're receiving. So I think making the patient and parent partners in their care gets rid of that kind of stigma. It empowers them right from the beginning," she said.
Over the years, Thomas has seen a subtle shift in culture at the hospital where parents are more involved in decisions.
"It's been a slow change, but I'm excited for things like SKIP. These pain initiatives will help people feel as if they have power and control, and I think that decreases the trauma because they feel they are part of the issue. This is being done with them instead of to them," she explained.
Some of the proven pain initiatives have already started to help Mason, who is now seven years old.
"At the Stollery, kids can come up with their own rules about how they want a procedure to go. And they get to tell the adults their rules, and I find that's been one of the more empowering and helpful approaches that we've had," explained Thomas.
These days, Mason lets the nurses know he prefers the swabbed alcohol to be dried, the tourniquet to be on top of his shirt, and to count to five before the nurses give him needle pokes.
"This is a kid where we would have to hold him down initially and now he just sits there, calm as can be, explaining the rules that he wants. As long as they follow his rules, everything goes great," said Thomas.
"I think it's the way to go," said Ali. "If we get the parents on board and the children on board, the health-care providers and the administrators have to follow, right? Because you can't say no to a family who is asking for a reasonable evidence-based treatment."
SKIP is funded by a $1.6-million grant from the Government of Canada Networks of Centres of Excellence, with additional funds for the Western Canadian hub donated by the Stollery Children's Hospital Foundation through the Women and Children's Health Research Institute. Other partners include Dalhousie University, Children's Healthcare Canada and the U of A.