Looking Back and Looking Forward: The Caring Experience

Genevieve Obarski, Executive Lead Program Implementation & Catherine Monk-Saigal, Program Associate

As many of you know, The Change Foundation (TCF) and the Ontario Caregiver Coalition (OCC) spent much of January and February of this year travelling across the province to hear directly from family caregivers for The Caring Experience project. From Thunder Bay to London to Ottawa, we heard unique perspectives at eight different caregiver workshops.

However, as different as these stories were, all were connected to similar themes. Though we’ll be releasing a comprehensive report on our research and engagement work with family caregivers and health providers in the coming months, we wanted to take this opportunity to look back on some of our own personal reflections.

 

Reflection 1: Caregiving takes a deep and varied emotional toll.

All eight caregiver workshops we held were emotional experiences. As some told their stories, they shed tears – others became frustrated, even angry. Regardless, it was clear to the TCF and OCC staff representing the project team at these workshops that caregiving takes a deep and varied emotional toll.

This might not come as a surprise. Family caregivers are often involved in providing very personal support. From preparing meals and helping with household chores, to assisting with medical tasks or advocating for someone in hospital, caregiving responsibilities can be stressful and some skills may require practice.

It should be noted, however, that caregiving can elicit tremendous personal strengths, and as seen in our feature with Katherine Arnup, it can intensify relationships between siblings, spouses, and friends. It was truly evident during these workshops that family caregivers are deeply dedicated to those they are supporting.

 

Reflection 2: Caregivers need empathy and true understanding from health providers and from their personal social circle.

One of the things we heard over and over from family caregivers was the need for empathy and understanding, even dating back to our kick-off telephone town hall. Caregiving can be a unique experience, meaning that it can be hard for those who haven’t taken on such responsibility to fully understand the challenges faced by family caregivers.

However, what many family caregivers said they wanted was simple: more recognition, more empathy, more understanding. It became extremely clear to the project team that more time is needed to listen to family caregivers and provide whatever support we can, regardless of where we fit in the health and community care systems. For health providers, for example, this could mean simply asking how someone’s day is going, speaking directly into their eyes, or recognizing a family caregiver’s voice when making important care decisions. For friends and family of caregivers, this could be offering help, or even a cup of coffee and some time to talk things out. These gestures of goodwill can go a long way for family caregivers who may feel like they are falling through the cracks.

 

Reflection 3: Caregivers are an extremely dedicated and resilient group of people.

Lastly, we have to express the dedication and resilience that each family caregiver showed at the workshops. All were taking time out of their day to tell their story, time otherwise spent caring for someone. We recognize how hard this must have been for some, but listening to them and hearing about all they have done to advocate and care for their family and friends in face of many challenges was eye-opening.

 

Final thoughts

As we look towards the new phase of The Caring Experience, now focused on hearing from frontline health providers, we’re excited to see what common ground will be discovered between caregivers and providers, and how this will inform our future work.

However, The Caring Experience project’s first phase will be remembered as an exceptionally powerful experience and a once-in-a-lifetime chance to connect with groups of extraordinary people. Family caregivers are the glue that holds Ontario’s health system together. Therefore, it’s imperative they have a permanent and recognized seat at the table.

As we continue our work, we will ensure that the voices of Ontario’s family caregivers remain strong and fully represented.

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Also from the Spring 2016 edition of Top of Mind:

If our work through The Caring Experience project has shown anything, it’s that no one family caregiver journey is
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For author and academic Katherine Arnup, her journey as a family caregiver started with a promise to her sister
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Over the past six months we have listened intently to the voices of Ontario’s family caregivers. This past winter,
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Hot Talks logo On April 27, 2016, Ontario policy makers, health professionals, family caregivers, and patients met to hear Heléna Herklots, Chief
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WHAT’S BEING SAID

Created in partnership with our #ChaningCARE teams, register to complete this 3-part eLearning module to learn through tips and examples how as healthcare providers you can help improve the experience of family caregivers. bit.ly/2U1Mlcs pic.twitter.com/lKzWKDPM4A