Integrating the caregiver voice: Reflections on the IFIC Conference

Jodeme Goldhar, Executive Lead, Strategy and Innovation

In May 2018, Carole Ann Alloway, a family caregiver, and I partnered to develop and present a keynote address at the International Foundation for Integrated Care (IFIC) annual conference in Utrecht, The Netherlands. A few months after our presentation – Transformation through integration: The Answer is With Patients and Their Families – I asked Carole Ann to reflect on her experience.   

Jodeme:

First of all, Carole Ann, it was an honour to have the opportunity to co-present with you in Utrecht. It truly was a collaborative experience. What was your reaction when you were first asked to co-present at the IFIC conference?

Carole Ann:

It was overwhelming at first because there were so many things I wanted to say. But to get the most value for the audience, I realized we had to choose a key focus. With The Change Foundation’s knowledge, background and guidance, we started brainstorming our message — that the caregiver voice must underpin integration — and the best way to get it across. 

Jodeme:

We know that health systems around the world see integration as a major opportunity for transformation. But perspectives on how to go about this transformation vary. Can you share how we approached this?

Carole Ann:

Well, from my point of view, and from The Change Foundation’s point of view, patients and caregivers need to be partners every step of the way as this transformation happens.

Our goal for this presentation was to be provocative and inspire people to truly understand that patients and caregivers are the experts on the physical, emotional and spiritual aspects of their lives. It’s important for healthcare professionals, researchers and policymakers to recognize their value, and to work in partnership with them.IFIC slide

We used this idea, together with The Change Foundation’s expertise on integration and system change around the world, to create a storyline. Within this storyline, we thought about how best to build and think about our presentation to address the topic from many different angles: the system, research, policy and everyday practice.

It was a pleasure working as a true collaborator on this presentation with you.  

Jodeme

On that note, we know the importance of working in partnership with caregivers. As a caregiver involved in this project with us, how did you feel about our partnership?

Carole Ann

I felt heard and valued sharing my lived experience. Together, we were able to help get my message across in a way the audience would understand. I didn’t want to just tell my story, I wanted people to leave with a sense of urgency to truly reflect on their own work habits, cultures and see how they could respond to what was possible by including their own patients and caregivers in the decision-making process and as a member of the team.

Jodeme

It was important to us, as we made this presentation, to give the audience a real sense of the caregiver experience. How did you approach this? 

Carole Ann

I didn’t just give a play-by-play of my caregiver experience. I also told the story of what could have been. I imagined my experience as if my husband’s care had been integrated and if the team was focused on what’s most important to me and my husband. I shared my reflections on the problems that could have been avoided, healthcare dollars saved, outcomes that could have been improved, as well as how the experience for my husband and I would have been so much better. I also believe if my journey had played out in this imaginary way, healthcare professionals would have had more job satisfaction.

It was important to me that the audience leave knowing that it isn’t hard to do. The answer is simple and everyone has a role to play in making a difference, and could start tomorrow. 

For more simple ideas that can make a big difference, watch the Caregivers Wishlist videos created by The Change Foundation in partnership with Carole Ann.

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WHAT’S BEING SAID

"My wishlist involves having something to help us navigate the system from hospital to home" -Fabiana, Family Caregiver #NationalCaregiverMonth #NFCMonth Hear from other #caregivers in our Wishlist videos: bit.ly/2zgVTYd pic.twitter.com/9w4l1RjoIA