Thursday, November 11, 2010

Caregiver health affects us all, researchers say

Many of you asked for more information about the national roundtable on the health of parents of kids with disabilities last week. At the meeting in Ottawa we heard an overview of research to date that’s been funded by the Canadian Institutes of Health Research. This research was conducted by Jamie Brehaut, Dafna Kohen, Peter Rosenbaum, Lucy Lach and their colleagues. Following is a summary provided by Jamie. Thanks Jamie!

Caregiver health affects us all, researchers say
By Jamie Brehaut

The health of caregivers is increasingly important from a policy perspective. For example, it’s apparent that parents who care for their disabled children at home are enormously valuable to the health care-system, which would otherwise incur considerably more cost providing institutional care. So understanding how to help keep caregivers healthy and providing them with tools to provide effective care makes good fiscal sense. Furthermore, it's becoming clear that caregivers of severely disabled children are only the tip of a very large iceberg. Childhood chronic conditions can have implications for caregiver health, which may put as many as 25 per cent of Canadian parents at risk for caregiver-related health issues.

In one study of 468 families of children with cerebral palsy, we compared the health of these parents to a random sample of Canadian families. Caregivers of children with CP (regardless of degree of disability) were at greater risk for a wide range of psychological and physical health problems, including emotional problems, back problems, headaches, asthma, heart disease, and many others.

In another study using Statistics Canada datasets, a broad definition of childhood health problems that included nearly one-quarter of Canadian families with young children showed that caregivers of children with these broadly-defined health problems were about 2.5 times more likely to report both depressive symptoms and chronic physical conditions.

While the majority of studies measured caregiver health at one point in time, we used Statistics Canada data to measure the health of caregivers over time, every two years, for a period of 10 years. Results showed that instead of compounding over time, health effects remained relatively consistent. However, caregiver health was affected by the complexity of the caregiving situation, with caregivers of children with more complex health problems consistently reporting poorer health.

The results of this work suggest that caregiver health is a public health issue, affecting a much broader range of caregiving situations than was previously thought, and potentially affecting as many as one in four Canadian families. There are important psychological and physical health implications of caring for a child with a long-term health problem or disability. And while there are also clear positive aspects of being able to provide care for a loved one, we need to know more about how to set up the conditions for successful caregiving, and whether some challenges parents experience can be prevented with better services and public policies.

This work has spawned several ongoing projects, including one that will use health administrative data to better understand the factors that contribute to caregiver health issues, and another focused on understanding successful parenting strategies in families of children with complex lives.


Thank you for this important information. I'm busy thinking to whom I can direct it as it's an enormous problem here in the United States -- with recognition and funding. It's become one of my passions, despite my own problems caring for a chronically ill child --

Thank you for this article. I am busy trying to advocate for my children and other parents in our area. I am suffering from depression as a result of caring for my Twin boys with CP. It is comforting to know that I am not alone in my struggles and gives me the strength to carry on.

Thank you Elizabeth!

Paula -- I'm so glad you wrote and welcome to BLOOM. It was wonderful to meet you last weekend. Depression is common for us parents and I hope you are receiving good care. I was inspired to hear of the amazing things you are doing for your sons and for other children in the community. Please keep in touch! xo

Thank you also...

I have been caring for my daughter who is now 17 years old. She suffered a massive brain injury due to Shaken Baby Syndrome. While caring for her over the years has been tremendously rewarding, however it most definatly has had a huge impact on my health. I have been suffering from Depression, panic and anxiety and also Fibromyalgia.
I am comforted to see this validation of us parents and caregivers, and what we do for our loved ones. Unfortunatly, this past year I had to place my daughter outside my home to be cared for by someone else...I would LOVE to see more attention put to enabling MORE families and support go to us parents that want to care for our children, aside from A.C.S.D and S.S.A.H. This is a huge problem and it saddens my heart that I had to do this. It breaks my heart and angers me that the Ministry will fund a home(group home or instituation) $70,000.00 to provide care for these children when it is proven that children do better in their own family environment. Now, I do also understand there are some children that are highly aggressive and what have you that cannot live at home...But, I believe with the right support and manpower, and funds these children and youth will also benefit greatly from being at home! I thank you for your time, and I appologise in advance if I have offended anyone by my comments.
I would love to be contacted in the future for any additional information regarding these above mentioned issues.
~Patricia C

Thank you for this article. It is very inspiring. It gives me hope to know that the subject of our health, as parents of special needs kids, is on the table as a public health issue. I'm only wondering what we, as parents, can do to truly bring real benefits for us and covert talk of policy to actual benefits. I can think of several concrete things that would make my life of caring for my very complex child much easier.