McMaster University

McMaster University

Tallying the burden of care

The Hamilton Spectator
April 27, 2009
By Joanna Frketich

Parents of disabled children report having far worse health than other parents and a McMaster researcher is determined to find out why.

Dr. Peter Rosenbaum is leading 13 Canadian researchers on a quest to find out the impact of raising a disabled child and how to prevent parents from becoming sick themselves.

His three-year study received $800,000 last Friday from the Canadian Institutes of Health Research and Bloorview Children's Hospital Foundation.

"A lot of this is preventable but we need to understand it better" he said. "We need to spend a great deal more time seeing this in the context of family and recognizing the potential impact on parents."

This type of recognition has been a long time coming for Hamilton single mom Diane Burchert, who has spent 15 years caring for a daughter with cerebral palsy. She also has four other daughters.

"They look at the child, but they don't look at the whole family," she said.

Burchert considers herself lucky to have good health but admits she's exhausted and stressed.

Everyday things like going into work a bit early or sending her daughter to school require complicated planning. She got a call recently from the high school because they had to call the fire department to rescue her daughter when the elevator broke, stranding her on the third floor.

"People don't fully understand. They look at you in a pity way but there's not the support of: 'Can I help you or do you need a break or do you need someone to talk to.'"

Rosenbaum, a professor of pediatrics at McMaster and the Canada Research Chair in Childhood Disability Research, is well known for two major studies identifying the problem of poor health in parents of children with disabilities.

He delivered a key lecture last Thursday in Austria and has had two editorials published in April in medical magazines such as British Medical Journal, Developmental Medicine and Child Neurology.

"Parenting kids is hard work," he said. "Parenting kids with disabilities is extra challenging ... Virtually everything parents with kids with cerebral palsy answered was statistically significantly higher — sometimes double the rates — of concerns, worries and cognitive difficulties."

He wants to find out how prevalent this is, why and what can be done to help. It's important because the amount of similar research being done on this is "pr etty thin."

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