Children's pain expert, close 17 year gap in getting info to parents



Emma juevenile arthritis

After Emma MacCormick, 13, was diagnosed with juvenile rheumatoid arthritis, her father felt helpless that he couldn't help her with her pain. (CBC)

#ItDoesntHaveToHurt, a social media campaign to put credible information on how to manage children's pain directly in the hands of parents, is part of unique venture between researchers and a popular parenting website.

Dr. Christine Chambers is a clinical psychologist and a professor of pediatrics at Dalhousie University in Halifax who's been researching children's pain for 20 years.  

"Studies have shown veterinarians get five times the training in pain as part of their education as physicians do," said Chambers, a mother of four who is also a professor of psychology and neuroscience.

Chamber's original idea to film a user-friendly video offering parents tips on how to manage vaccination needle pain has been viewed more than 150,000 times on YouTube in 120 countries.

She recognized that poorly managed pain impacts brain development, learning and behaviour. There's lots of great evidence to help families, but on average it takes 17 years for research to make it to the public, Chambers said.

Chambers wants to focus on getting the information into the hands of parents because they're often the common denominator in nearly all pain experiences in children. She believes parents can be the strongest advocate for their child.

It's probably one of the most helpless feelings a parent can have​, to know your kids are in pain and it's not something that a hug or anything like that could fix. - Robert MacCormick

Earlier this year, a Pew survey suggested 75 per cent of parents use social media for parenting –related information and social support.

Robert MacCormick of Fall River, N.S. said he sought out news forums, articles and videos to try to bring some comfort to his children.

"It's probably one of the most helpless feelings a parent can have​, to know your kids are in pain and it's not something that a hug or anything like that could fix."

MacCormick's 13-year-old daughter, Emma, is diagnosed with juvenile rheumatoid arthritis. Her brother, Liam, 16, developed a complex pain syndrome after he was stung by a box jellyfish while on holiday in Jamaica.

"I go online and I try and find information," MacCormick said. "The challenge there is that information isn't always on point," such as U.S. information that may not be relevant in Canada.

The information Chambers puts out through #ItDoesntHaveToHurt has a seal of approval from her research team, which sifts through the research to find the best nuggets.

The information is then packaged by Erica Ehm's team at the, the Canadian-based parenting website.

"I think it's the colliding of storytelling with research is what makes it really magnificent and understandable for parents," Ehm said.

As part of a partnership funded by the Canadian Institute of Health Research, Chambers and Ehm plan to track the campaign for one year using repeated interviews and surveys with parents as well as analytics on social media reach and engagement to see if parents find it beneficial. There will also be an external, objective evaluation.

If the project is successful, it could serve as a model for to communicate other medical research. 

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