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!

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