Partnering during a pandemic

This blog post was written by Britt-Mari Sykes – CHEO Family Advisor

I became a family advisor following a five-year period during which my son accessed health care services at CHEO. We were what CHEO calls “frequent flyers”.

For me as a parent, engaging with the health care system on such a regular basis was an eye-opening experience. You develop a relationship with health care because it becomes so much a part of your life. You start looking at the health care system from a variety of perspectives, not simply as a user. During the many hours spent at CHEO in those years, I increasingly took notice of the inner workings at CHEO, including their policies and procedures, attitudes about health care in general and how it all ends up coming together in day-to-day practice.

My experience overall was positive and I learned a lot. It also had an enormous impact on me and I wanted to use my experiences to advocate for others and contribute to CHEO in some way. This is a common sentiment for a lot of family advisors who get involved at CHEO — drawing on your own experiences to give back and contribute in a meaningful way. I discovered that one of the many possibilities to contribute to CHEO was as a family advisor.

CHEO’s commitment to its partners-in-care mandate drives opportunities for meaningful partnership with youth, families and caregivers. Partnering is more than just listening to parents. The partnering that CHEO strives for is meaningful because of the effort made to understand each family’s experiences and to integrate what is learned to further benefit every child’s health and wellbeing. I saw CHEO put this into practice throughout the five year period I was here with my son. It was very apparent to me that it’s not just words, partnership is an attitude that is practiced and encouraged through collaboration so that the voices and perspectives of CHEO’s diverse patient population can be found in every aspect of CHEO.

I began contributing as a family advisor on multiple committees at CHEO just over two years ago. Then this year along came the COVID-19 global pandemic! When it hit one of my first thoughts was about our vulnerable populations and how they might be affected—how people with disabilities, the elderly, and of course children/youth with chronic care or mental health needs would continue to be supported by the services they rely on. As one of these key service providers, CHEO needed to adapt and get creative, all the while maintaining quality of care and safety. And within this new reality, new opportunities arose for partnerships with family advisors.

Pandemics expose many vulnerabilities in a society and health care is no exception. Meeting the physical and emotional needs of those youth and families particularly vulnerable during the pandemic has reinforced the importance of family partnership in how new policies are created and put into place, in creating new access to care, and of course reducing fears and frustrations.

Staff and physicians at CHEO worked hard rolling out many new policies, making changes to procedures and protocols and introducing virtual care throughout much of the organization—including clinic appointments, bedside rounds and even providing the first pediatric virtual emergency room in Canada. These were all changes that youth and families had to adjust to on top of coping with postponed appointments and surgeries, and other changes made to the services they rely on.

Through all this families had many questions and concerns. This required a lot of communication to inform the public about the new health care reality at CHEO. And this gave rise to many new opportunities to contribute as a family advisor. CHEO had several working groups on a variety of topics and many family advisors have been integral partners as members of these groups—myself included. In my own case, along with another family advisor, I joined CHEO’s Incident Management Team. By participating in the team’s calls, I recognized how valuable it is to have families’ “ears”, and very often a voice, present at these meetings.

Along with many other family advisors at CHEO, I have also provided my thoughts and guidance on the wording of surveys, feedback forms, information and service guides that were being prepared for youth and families. I also collaborated with other family advisors and staff from CHEO’s Patient Experience team to present a webinar for the Children’s Health Network on the topic of “Partnering during a Pandemic”.

These family advisory experiences, particularly in the context of a pandemic, have been personally enriching and humbling. The opportunity to contribute to the daily work, commitment, creativity and innovation that go into every detail of hospital functioning and health care at CHEO has been enormously gratifying. I’m proud that CHEO so openly brought in family advisors to serve as partners right from the very beginning.

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