Sasha Bella Stein Blumberg Forever 2143124

Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.

Health of Families of Children with Disabilities - National Roundtable Report

CanChild, the Centre for Disability Research, recently published Health of Families of Children with Disabilities: National Roundtable Report which highlights care for the caregiver as a critical and increasingly vulnerable element of child health and safety in a family centered care model.

Executive Summary
A surprising number of Canadian children grow up with chronic mental or physical health problems, although estimates of prevalence vary dramatically across the many available definitions. The number of Canadian children aged 0-19 years who have a physical disability is estimated to be between 7-8%, while 10-12% of children have some degree of cognitive deficit or learning disability. While different definitions of childhood health problems will continue to be applied for different purposes, it is clear that a substantial proportion of Canadian children and their families must cope with chronic childhood health problems.

Caregivers play a central role in the lives of children, and the well-being of each is inextricably linked to the other’s well-being. Caring for a child involves considerable demands on time, energy, and finances. Such demands can, however, be much greater for parents of children with disabilities. Clearly documented demands include increased time (everyday care, medical appointments), higher medical costs ranging from 2.5 to 20 times typical amounts, greater childcare challenges (respite care, accommodation in regular programs), more employment constraints (work schedule, choice of occupation), lower income, as well as greater stress,
anxiety about the future, and lack of sleep. While many families cope well with these challenges, these additional personal and financial pressures can amount to a significant burden.

A growing body of literature is now revealing that challenges shouldered by families of children with disabilities can be associated with an increase in a wide variety of both physical and psychological health concerns. Caregivers of children with disabilities have been shown to report a greater number of chronic physical conditions as well as exhibit poorer psychological health, including greater stress, distress, emotional problems, and depression compared to caregivers of children without disabilities. These findings are consistent in showing that there is an important relationship between child disability and caregiver health.

On November 5th, 2010, the Ottawa Hospital Research Institute (OHRI) hosted an invitational roundtable on the health of caregivers of children with disabilities funded by the Canadian Institutes of Health Research (CIHR) and Health Canada. The purpose of this roundtable was to engage parents, researchers, clinicians, policy makers, and representatives of non-government organizations in a process designed to facilitate the development of tools and approaches to support families of children with disabilities.

The roundtable agenda was developed around four key objectives that were successfully achieved: (1) Discuss the findings of recent CIHR-funded studies focused on the health of Canadian caregivers of children with disabilities. (2) Consult with stakeholders and decision makers about what issues need to be informed by future research. (3) Initiate the development of practical, research-based knowledge tools and approaches that will 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.

Participants first engaged in an activity individually and in groups to focus on “What needs to be done?” They then identified seven priority areas to support families of children with disabilities. Next, they brainstormed and discussed “What action can we take?” in each of the priority areas.

Several key messages and recommendations emerged from these discussions, and these can be summarized as follows:
1. Increase caregiver capacity to navigate effectively through the health care system.
2. Reduce caregivers’ feelings of powerlessness.
3. Embed caregiver health into existing policy frameworks.
4. Identify key messages for dissemination.
5. Provide caregiver relief / respite.
6. Promote system change to improve support for caregivers.
7. Develop a theme template to organize information on existing programs and policies across the nation. [emphasis added]

This meeting report includes the discussions and group work of these seven priority areas.