Cathy Fooks

New Report from The Change Foundation Takes a Closer Look at Family Caregivers in Ontario

Profile-Family-Caregivers-coverToday The Change Foundation (TCF) released A Profile of Family Caregivers in Ontario, an in-depth review of Ontario-specific data from Statistics Canada’s 2012 General Social Survey (GSS) on caregivers and caregiving. The report is the first of its kind for Ontario using the GSS and helps to paint a more complete picture of the province’s family caregivers in a number of key demographic categories.

“This report is an extremely comprehensive analysis of key data on Ontario caregivers” said President and CEO Cathy Fooks. “We’re excited to share this foundational resource for Ontario health care stakeholders, and we’re confident it can be an instrumental tool for policy and program development that supports caregivers.”

A Profile of Family Caregivers in Ontario covers a wide range of quantitative data on caregivers including gender, health, and socio-economic status.  The report also sheds important light on some of the reasons family caregivers provide care and what impacts these activities have on their lives.

The report’s key findings include:

  • An estimated 3.3 million Ontarians, 29% of the provincial population, are family caregivers.
  • 53% (1.8 million) of caregivers are women and 47% (1.5 million) are men.
  • Nearly three in 10 caregivers perform medical treatments such as tube feedings, wound care and injections.
  • 5 million Ontario caregivers are balancing caregiving duties with paid employment and of these caregivers:
    • 30% (741,000 people) were late for work or had to leave early;
    • 29% (735,000 people) missed an average of six days of work because of caregiving duties; and
    • 1% (33,000 caregivers) left their employment voluntarily or involuntarily.
  • One million caregivers said they felt they had no choice in taking on their caregiving responsibilities.

The publication of this report, and the research and engagement work completed by TCF in the first year of its strategic plan, serve as a call to action moving forward. The next phase of TCF’s work will be working with organizations that are interested in engaging, collaborating, and working differently with family members in support of a patient’s care. Further details on these opportunities will be made available in Fall 2016.

The Change Foundation also gratefully acknowledges the dedicated and substantial work of Research Associate Stephanie Hylmar in the analysis, writing, and editing of this report.

For more information about our engagement with family caregivers, or to download, A Profile Family Caregivers in Ontario, please visit

To find out more about the GSS, please contact Statistics Canada, or visit their website:

For more information, please contact:

Communications at

Balance Key to Our Work

CFooks 2Over the past six months we have listened intently to the voices of Ontario’s family caregivers. This past winter, we crisscrossed the province for The Caring Experience project, stopping in eight cities to meet with family caregivers at different workshops.

I was fortunate enough to attend the first workshop in London, Ont. It was striking to hear family caregivers speak with such candor and emotion – some for the first time. For many, I think the experience was cathartic. I even saw participants staying back to continue discussion, exchanging emails and phone numbers.  And, while there were some stories highlighting very positive experiences, for many it is a largely unsupported role.

This first phase of The Caring Experience has drawn to a close, and we’ve now begun to hear from those who work in Ontario’s health care system – Ontario’s health care providers.

Through a series of engagement sessions with frontline health care providers, we’re casting a wide net to ensure we hear many perspectives—from residents training in rural medicine to personal support workers and nurses. As we won’t be able to meet with everyone, we’ve also created a survey that providers can complete online.

This new phase is extremely important to us as we seek a balanced understanding of the spectrum of family caregiver interactions in the system. We hope to see what common ground exists between those who use the system, and those who work in it. Taking this more holistic approach will serve us well when we move into the next chapter of our strategic plan: the action phase.

You may also notice that this edition of Top of Mind includes the release of our latest publication, Charting a New PATH—a three-part report that describes what we learned through our Partners Advancing Transitions in Healthcare (PATH) project.

PATH was a tremendous learning and growing opportunity and we’re confident it has helped to lead an increase in the number of forums and opportunities for patients, family caregivers and providers to come together.

However, while we’re encouraged by the strides being made for meaningful patient engagement in Ontario, it’s extremely vital that these initiatives are more than a “tick box” exercise. There are a series of important and sometimes difficult decisions that need to be made to ensure that the expertise of patients and family caregivers are given equal weight to all those sitting at the table. Taking time to really listen to the concerns of these individuals is one step, but finding the right ways for action, recognition, and potentially compensation often take more time and thought. That’s why we share so much of what we’ve learned through numerous publications, such as Rules of Engagement and At Work, In Play.

Lastly, I’m excited to mention our upcoming Hot Talks on Health event with Helena Herklots, Dr. Joshua Tepper, and family caregiver Katherine Arnup, PhD. It’ll be a dynamic discussion where we’ll hear three unique points of view, and gain insight on what has been done in the United Kingdom for family caregivers, and what potential pathways exist for Ontario health policy. I sincerely hope you can join us.

The Change Foundation Releases Its Top Recommendations for Patient Engagement

Recommendations for Patient EngagementToday, The Change Foundation released Rules of Engagement: Lessons from PANORAMA, a collection of 15 recommendations and recommendations for patient engagement. The recommendations are on based on The Change Foundation’s work with its PANORAMA Panel, a group of 31 patients and family caregivers that met regularly between 2012 and 2014 to share their experiences in Ontario’s health system.

Rules of Engagement: Lessons from PANORAMA serves as an excellent resource for health providers and professionals looking to carry out similar patient engagement activities or who are already running established programs. The paper outlines key moments in the engagement process that require extra thought on the part of the organizer that help to ensure participants feel valued and respected.

“We felt it was imperative that we share the knowledge PANORAMA brought us,” said President and CEO Cathy Fooks. “Health providers and professionals can benefit immensely from these recommendations, and in turn create a patient engagement experience that rewards both the organization and the participant.”

The PANORAMA Panel was a ground-breaking patient engagement project, as well as an incredible learning opportunity for The Change Foundation. Over the course of two years, panelists from across Ontario met to share their lived experiences and insights as patients and family caregivers on a range of issues related to improving people’s healthcare experience.

The Change Foundation gratefully acknowledges the dedicated and substantial work of the PANORAMA Panel.

For more information on Rules of Engagement: Lessons from PANORAMA, and to see a list of the Panel in its entirety, please visit

Caregiver Insight Invaluable

CFooks 2The first year of a new strategic plan is always eye-opening, especially when you start off with a new vision and focus, as we did.

Through our burgeoning engagement with family caregivers, we’ve been able to gain some initial, yet profound, insight into the issues family caregivers face when they interact with Ontario’s health and community care systems.

Our work has also been bolstered by an increasing amount of recognition and awareness of family caregivers and their role in our health system through growing news, journal articles, and television programming.

This momentum has been felt at The Change Foundation first-hand through The Caring Experience, our new project in partnership with the Ontario Caregiver Coalition (OCC).

At The Caring Experience’s recent telephone town halls on November 24th, we heard stories and received questions from caregivers that illustrated why we need to continue to bring attention to the duties and responsibilities Ontario’s family caregivers take on, and how they are integral to the system.

During the town halls, I was again struck by the differences and similarities inherent in each individual caregiving experience.

For some, we know that caregiving can last for long, extended periods of time. For example, caregiver Donna Thomson, who joined us for the town halls to share her experience, has been the primary caregiver for son Nicholas almost since his birth in 1988.

We also heard from Maciek Karpinski, who provided shorter term support and care for both his mother and brother as they went through separate health issues.

Despite the factual differences in their experiences, both Donna and Maciek echoed each other in terms of how they felt. They both had great experiences and bad encounters. Both described feeling helpless and ignored while they navigated the health system, and both had to assert their presence in order to be acknowledged as an integral member of a care team.

In this issue’s commentary article, our Genevieve Obarski and OCC Chair Lisa Levin take a few moments to comment on how sharing experiences through something like The Caring Experience can show the deeper connections between caregivers and help sustain the recent momentum recognizing the role of the family caregiver.

Our current work doesn’t end with The Caring Experience project, however. Over the next few months, we will be reaching out to health care providers to increase our understanding of their relationships with family caregivers. We’re also hoping to collaborate with caregiver organizations or groups from diverse communities to fully capture the breadth and depth of the caregiving experience in Ontario.

The work ahead is exciting and unchartered, and we hope you’ll continue to join us on the journey!

The Change Foundation’s Journey into the World of Patient Experience

In The Change Foundation’s Journey Into the World of Patient Experience, CEO Cathy Fooks provides high-level reflections on our  2010–2013 strategic journey, focusing on the lived experiences of patients and caregivers to drive system change. She says, “We decided we’d better listen to patients – maybe it would change how we saw the world of Ontario healthcare. We did listen. And it did.”

Our 2011  Loud and Clear consultations crystallized the difficulties seniors with chronic conditions have encountered in navigating the system. Fooks’s reflections outline how those consultations and subsequent research, policy analysis and patient engagement work led us to develop two signature projects, launched in 2012: Northumberland PATH and PANORAMA.


How do we define ‘family caregiver’? By “family caregivers” we mean family, friends and neighbours who provide the vast majority of care, support and enrichment to those who have health related needs. Learn more about us and our work: