Health of Caregivers of Children with Disabilities
I am writing to let you know about a national roundtable I participated in on November 5 in Ottawa. This invitational event was hosted by the Ottawa Hospital Research Institute and funded by Canadian Institutes of Health Research (CIHR) and Health Canada. Just over fifty people took part; I was one of seven or eight there “as parents.” None of the parents was there to represent an organization, but all of us were all asked to spread the word about the issue of the health of caregivers of children with disabilities, in general, and about what happened at the workshop, in particular, with all those who might be interested—and that would certainly seem to include all those who are a part of CFAN.
The text that follows is something of a hybrid. Much of it is taken directly or with just minor revisions from the briefing note created by the organizers. I have added some content, especially about Dr. Brehaut’s presentation, that I think will be of particular interest to families. I have also added a section at the end called “What You Can Do.”
The purpose of this roundtable was to engage parents, researchers, clinicians, non-government as well as government organizations, and policy makers in a process designed to help develop what are called “knowledge tools” needed to support families of children with disabilities. The objectives were to:
1. Discuss the findings of recent CIHR-funded studies focused on the issues of the health of Canadian caregivers of children with disabilities
2. Consult with stakeholders/decision makers about what issues need to be informed by future research
3. Initiate the development of practical, research-based knowledge tools that would be useful for supporting the health of caregivers of children with disabilities
4. Improve links and exchanges among researchers, policy makers, and caregivers committed to improving the health of caregivers of children with disabilities.
The organizers who reviewed the feedback from roundtable participants report that the participants and they themselves thought the event achieved those objectives and more.
This one day roundtable began with two keynote speakers. Dr. Jamie Brehaut provided an insightful overview of research being conducted by a multidisciplinary research team. Among the findings he reported were the results of an Ontario study that showed the caregivers of children with cerebral palsy were about three times more likely to have back problems, five times more likely to have stomach or intestinal ulcers, and three and a half times more likely to have heart disease than the general population of caregivers.. A broader study using Statistics Canada databases showed caregivers of children with health problems were two and a half times more likely to report depressive symptoms and two and a half times more likely to report a chronic health condition. The news wasn’t all bad. For instance, “many caregivers report positive aspects associated with being able to provide effective care,” and “some studies show REDUCTION in mortality among caregivers.” Dr. Brehaut noted that caregiver health is increasingly on the radar as a public health issue in Canada, though most often in relation to the care of the elderly. Meanwhile, half a million people under twenty have some form of disability.
Ian Brown, author of The Boy in the Moon, then spoke about caring for his son Walker, as well as his hopes for a society that does not try to fix the disabled, but rather tries to learn from them. Those of you who heard Ian in Halifax will know how insightful and thought-provoking he can be. He remained for the rest of the day as one of “the parents.”
These presentations were followed by a combination of plenary discussions and group work.
Participants received several documents in advance of the meeting, including a summary of the results of a pre-roundtable survey (completed by 95% of the participants) and an overview of research findings. Most of the day was focused on discussing the implications of caregiver health risks, suggesting mechanisms and approaches for sustainable change, and identifying priority areas for future research.
Participants identified key priority actions for the next two years:
1. Redirect health systems’ attention to an integrated approach to caregiver support, including family-centred health care and a caregiver navigation system
2. Develop a template of key themes to organize information on programs and policies by province/territory, and begin to populate the template and make it available nationally
3. Develop a communication strategy that positions the health of caregivers as part of a pressing public health issue, and embed this perspective in new and existing policy frameworks
4. Create national standards for assessing caregiver health
5. Reduce the powerlessness of caregivers by addressing isolation and lack of information
For each of the priority areas, participants suggested people in the room who could
generate the momentum required to move these recommendations forward.
The final activity of the day was a discussion on areas for future research. Participants explored what evidence would be required by policy makers to implement some of the recommendations generated throughout the day. The implications, impact and outcomes of the Alberta caregiver legislation were also mentioned as a potential aid to policy makers. Participants suggested more research on the actual health care costs incurred by families, on their quality of life, on the “costs” (or effects) of caregiving on income and employment, and on respite care including a cost benefit analysis. Participants also emphasized the importance of mining the results of research on caring for the elderly and young adults to see if these experiences can be adapted to helping families of children with disabilities.
Dr. Peter Rosenbaum and Dr. Dafna Kohen closed the roundtable by thanking participants for their contributions to this important dialogue. They confirmed that the group had met the objectives for the day and emphasized the value of continued networking among participants that was initiated at this meeting. They also pledged to maintain the momentum that was generated at the roundtable.
What You Can Do
The organizers and indeed all the participants are keen to spread the word about the importance of the issue, about what is already known or coming to be known about caregiver health and its effects, and about what is being done or needs to be done in the realm of public policy. Dr. Rosenbaum emphasized at the end that the purpose of research in this area is to improve the lives of children, youth, and families, so there will eventually — and maybe quite soon -- be need for lobbying, letter-writing, and the like. My own sense is that parents are almost always the best advocates for their children but often very reluctant advocates for themselves. But of course the health of children and the health of their parents and their whole families are intimately and inextricably related.
• share this report with anyone and any group you think may find it to be of interest,
• let me know if you have questions about the roundtable that the above does not address, and
• let me know if you have suggestions or questions you would like me to pass on to the four organizers of the event (Drs. Kohen, Rosenbaum, Arim, and Brehaut).
I will share with everyone on the CFAN contact list any further information I receive about what follows the roundtable. In addition, I know it is the intention of the organizers to engage more parents and other caregivers in subsequent activities, and I’ll ensure they know that they will find valuable contributors among the groups and individuals who make up CFAN.
November 21, 2010