National Roundtable on the Health of Caregivers of Children with Disabilities

Frank Gavin recently shared with CFAN his report on a round table event hosted by Ottawa Hospital Research Institute and funded by CIHR which identified caregiver health as "a pressing public  health issue" needing an integrated health system response. Per Frank's request to share, what follows is his report verbatim. Please share your thoughts on the priority actions and any suggestions for initiatives to promote caregiver health. When I think of addressing caregiver "isolation and lack of information", the support that is top of mind is properly resourced peer support programs.  

National Roundtable
on the
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.

The Process

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.

So please
•    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.

Frank Gavin
November 21, 2010

Cultural Competence workshops hosted by the New Immigrant Support Network

Following a federal grant in 2009 to support new immigrants,  SickKids setup a New Immigrant Support Network.  The NISN is an important family centered initiative and was highlighted in the 2009-2010 year in review under "improving access for newcomers" to Canada.  The work is currently focused on translating family support guides and cultural competence education workshops for staff.

Parents volunteering on SickKids committees and members of the Family Centred Care Advisory Council are encouraged to consider attending a workshop on Cultural Competence.  Please see the workshop descriptions below provided by Karima Karmali, the NISN Director. Jan/Feb schedules will be forwarded to the FCCAC co-chairs and Karima is hoping to meet and present to the FCCAC  in early 2011.  

Cultural Competence workshops at SickKids Hospital

Session A examines the settlement-related stressors experienced by new immigrant families and the difficulties they face when a child is ill. The social determinants of health are reviewed in this context and a cultural competence framework and cultural assessment tool are presented. Participants will have an opportunity to reflect on how personal values, assumptions and biases can impact on the healthcare provider-family/patient relationship. Learners will gain an understanding of how cultural competence links to patient safety and family-centred care.

Session B will focus on developing skills in collaborative communication and cross cultural communication with a particular focus on working effectively with medical interpreters. Participants will have an opportunity to learn about cultural differences in parenting practices, mental health perspectives, and the expression of pain. A cultural competence lens will be applied to clinical case studies.

Session C will focus clinical cultural competence in situations related to the use of complementary and alternative therapies as well as bereavement and grief. Participants will have an opportunity to apply and enhance cultural assessment and cross cultural communication skills with Standardized Patients.

Cultural Competence for Non-clinicians examines the challenges that new immigrants face as part of the settlement process and the difficulties they encounter in the health care system when they have an ill child. Participants will have an opportunity to reflect on personal values, biases and assumptions and learn about how all hospital staff can play a role in providing culturally competent service.

@sickkids newsletter

I just received my first new SickKids Hospital e-newsletter called @sickkids and I opened the email like it was a present, which it was. I really am happy to see this quarterly roundup - this issue included eight articles which link to website stories and one Did You Know tip. Here is the link to the latest issue and to subscribe to the newsletter you can email or subscribe online. And so we read that:
SickKids has been inducted into the Palladium Balanced Scorecard Hall of Fame for Executing Strategy, one of the preeminent awards in enterprise performance management which has been presented to only a few hospitals in North America. 
SickKids was inducted along with the Federal Bureau of Investigation, Cisco and other companies you may know, and some you wont. We learn from the fact sheet that:
"Most hospitals have a set of key performance indicators focused on clinical measures. SickKids wanted more than a measurement tool; they were looking for a new way of managing. They implemented a comprehensive strategy management approach. SickKids strategy maps and scorecards drive management meetings, with agendas that focus on a rotating set of strategic themes. In three years operating margins jumped 80%, international revenue increased fivefold, medication reconciliation improved from 33% to 78%, and MRI wait times improved 34%. Patient satisfaction and employee engagement are also up. “We are at the leading edge of the curve in health system performance in key areas,” says Mary Jo Haddad, president and CEO. “Our Office of Strategy Management has been instrumental in cascading the Kaplan-Norton approach. We have developed strategy execution as a core competency across the enterprise that has helped us achieve an execution premium.”
Those working on patient and family centered care should mind the scorecard's "simple premise". 
The Hall of Fame award honors organizations that have achieved execution excellence through the use of the Balanced Scorecard (BSC), the world’s preeminent strategy and performance management system. The BSC is based on the simple premise that “what gets measured is what gets done. (emphasis added)”
What are the measures we will use to chart family-centered care improvements?

Patient reported outcomes

Pauline Chen's recent New York Times article titled "Listening to Patients Living With Illness" is a good news story for patient and family centered care which also strikes some odd notes. The article begins by introducing an adult experiencing severe side effects from radiation that he considered to have been understated in earlier discussions; the patient would now definately choose surgery. The problem is that "medical research has long been driven by a single overriding goal — the need to find a cure."
Most published studies are marked by a preponderance of data documenting even minor blips in laboratory values or changes in the size of a spot...

Few studies, however, focus on the patient experience.

The result of all this emphasis on cure has been a nearly embarrassing richness of choice for patients with diabetes, heart disease, H.I.V. infections and even some cancers. The increasingly sophisticated treatment regimens that now make up medicine’s armamentarium have transformed once life-threatening diseases into chronic ones, but in the process have given rise to a group of individuals who are caught in the unenviable position of living with an illness that never quite goes away. No longer forced to make once-in-a-lifetime life-or-death treatment decisions, they instead struggle each day with the side effects of the very treatments that keep them alive.

“To some extent, we’ve conquered death,” said Dr. Albert W. Wu, lead author and a general internist and professor of health policy and management at the Johns Hopkins Bloomberg School of Public Health in Baltimore. “Now we have people living with chronic illnesses, and how they experience quality of life every day has become an important part of how they are doing and whether the treatments are worthwhile.”

To effectively capture the patient perspective, Dr. Wu and his co-authors propose making patient-reported outcomes a more routine part of clinical studies and practice and administrative data collection, in some cases requiring the information for reimbursement (emphasis added). For several months now, they have been incorporating data about patient experiences into routine medical practice at Johns Hopkins. Using a dedicated portal called, patients can, at the suggestion of their physicians, fill out surveys about their energy levels, social functioning, mental health, nausea and pain. The information is then handled like more traditional clinical testing; access is reserved for the patients themselves and their doctors.

Currently, the site is open only to patients diagnosed with breast or prostate cancer, but Dr. Wu and his colleagues hope that eventually all doctors will be able to order patient surveys that measure experiences like levels of pain, physical functioning or depression, proactively identifying results that are high or low, then reviewing those results with patients. And despite initial concerns that patients might feel overburdened by the questionnaires, most have been enthusiastic.

“Patients want to have more conversations with their physicians and other providers about these kinds of issues,” Dr. Wu said. “Sometimes it’s difficult to cover all this information during the medical encounter, and these surveys may be another opportunity to do that.”

Couple thoughts. Overall I love the concept: more patient voice in the data stream will lead to research themes identified that can help more patients. However there is an element of compulsion implied by "in some cases requiring the information for reimbursement" that wouldn't occur in Ontario presumably.

There are also different routes to this end: here the method is "doctors will be able to order patient surveys". What about collaborative narrative medicine (written up here and on BLOOM's excellent interview with Dr. Rita Charon) where staff and patients write their stories to learn each others' perspectives.

It also isn't the case that doctors suddenly woke up to the fact that not all patients are cured, or that all patients depend only on doctors for information. These surveys seem like a medical world catching up to and trying to rein a horse that has bolted the clinic. After centuries of medical centered care and little more than a decade of patient and family centered care, new web portals allows patients to share their own information. The wildly successful PatientsLikeMe portal has 60,000 patients logging their health details and communicating on options. The site's tagline is "Learn from the real-world experiences of other patients like you."

U.S doctors also face a compensation problem. Dr. Robert Martensen in a blog entry titled "Talking and Listening to Patients" suggests conversations (the most prolific procedure of all) is poorly compensated.

“I can spend an hour and a half talking with the patient and the patient’s family when the patient learns they have a life threatening diagnosis. We can spend 2 hours together which is perfectly appropriate – it’s the way to go I think to find out what matters to them, relevant medical history, do a physical exam, etc. In New York State, Medicaid pays $18 dollars for that service. If, on the other hand, I said with the patient, you have this problem we think, it looks like….today we are going to be doing a lot of tests, spend 15 minutes with the patient, maybe do a procedure myself – that procedure would be well compensated. But my time to listen, that is not compensated and yet that makes all the difference in what people experience as they are navigating this very daunting set of circumstances.”

Perhaps surveys will be better compensated too. Back here in Ontario we can also work to ensure medical and nursing and allied professional education teaches the art of listening and talking and being accountable to those conversations. Part of that work is educators inviting parents to talk to students.

Patient safety resources: Safe To Ask, Chasing Zero

Do you know how to keep your child safe in hospital?

Read about how to be a patient safety partner with staff at SickKids.

Check out these five very short patient safety videos on Manitoba's SafeToAsk website.

And for those who want more, here is a link to the 53 minute film Chasing Zero by Dennis Quaid which moved audiences at Patient Safety Week this summer. I defy you to watch any amount of this video and not be shocked, inspired and a little teary. The Quaids have done a great job of focusing and ramping up the patient safety crusade and they follow in the footsteps of many other parents who over the years stuck their necks out to advocate for a culture that focuses on eliminating preventable harm and that prioritizes the emotional needs of the family and staff to communicate transparently and honestly above institutional fears of professional liability.