Changing CARE for caregivers

Genevieve Obarski, Executive Lead, Program Implementation

Back in 2015, when we first waded into the unknown waters of the caregiver experience, we weren’t sure what we were getting into. But what we did know was that The Change Foundation, as an independent and unbiased organization, was uniquely placed to explore this issue with both caregivers themselves and the providers who intersect with them in Ontario’s health and community care system. So, while the path forward wasn’t exactly clear, we were confident it was the right time and opportunity for us to lead this necessary provincial conversation.

From our first tentative focus groups, through the hundreds of discussions with caregivers and providers in 2016, to the current engagement now being held with caregivers and providers in our Changing CARE teams, I am convinced we chose the right themes and path to advance this work in Ontario.

We kept all the conversations disease and caregiving situation “agnostic,” and we asked people to tell us what would make a better partnership between families and providers in serving those who are cared for in health and community services. We heard the same things back then as we hear now:

  • Caregivers want to be recognized for the important role they play, included in discussions and decisions about their family member and treated as a partner in their care.
  • Caregivers want respectful timely, accessible and inclusive communication.
  • Caregivers want to be asked how they are doing and what the system and its providers can do to facilitate their “work” of being a caregiver.
  • Caregivers want to have easy access to the knowledge, supports and training that are necessary for them to be the best caregivers they can be.

The Change Foundation is promoting the revolutionary idea that it is the job of the health care system to create the conditions and the culture for partnering with family caregivers. This is the experiment we are conducting with the Changing CARE projects we are supporting.

We believe we have found four partnerships that have the three key components to successful improvement: the will, the ideas and the execution of changes.  

The Foundation has the privilege of providing resources to these four groups to support engagement, co-design, and implementation, which we and the Changing CARE teams believe will lead to significant positive changes in the provider-family caregiver partnership and interactions. 

The observation that these themes remain universal in the engagement we have had, and are continuing to have, with caregivers and providers, is proof to me that we chose the right course. I am convinced that by supporting, highlighting, and teaching others about the work that caregivers and providers are doing together in teams in the Changing CARE projects, that we can make a difference in the experience that Ontario’s caregivers and providers have in partnering to support those receiving health care services.  

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