Way back in December, I shared a little about my experience as a parent representative at the Pediatric Cardiac Intensive Care Society’s Annual Meeting in Miami. As anyone who has been a patient advocate at a medical conference knows there were many great experiences, (see my quick recap below) and there were frustrating experiences.
That’s a wrap on my first cardiology conference @thepcics
✅ Brought a parent perspective
✅ Shared our family’s story
✅ Talked about my dad
✅ Introduced digital storytelling
✅ Met great people
But I was truly speechless after listening to Episode #76 of the PCICS Podcast. The hosts of the podcast and the conference organizers sat down and shared their thoughts and learnings about this first meeting back in person. What I was not expecting was how much they talked about what my storytelling session brought to the conference.
“I was unsure of how the parent voice would fit in because we haven’t done it frequently…the parents that were chosen were the perfect fit. And they really elevated those sessions”– Christin Diller, PCICS Episode 76
Their discussion of inclusion of the parent perspective at this year’s meeting starts around the 10:00 minute mark and I could feel myself start to grin as I listened to them talk about “learning more” from parents. By the end of the podcast where they discussed my session, The Importance of Telling & Sharing Your Story – Using Digital Storytelling to Foster Healing and Resilience, I was literally dancing around the kitchen. My younger son, Maverick, was asking me why I was so happy and all I could respond with was “because stories matters!!”
Hear about the science, community, and important team contributions to our field, including the important role of the patient’s family and the bedside nurse. Several guests join us to discuss all the things they learned and how they might change their practice.
What Stood Out
There were a few statements during the podcast that really helped me realize just how much I had actually contributed and I have included them below. Partly as a shout out to all the patients and families who stand up and tell their stories, but also as a reminder to me down the road when things get tough that the stories I share support not only my own mental health but also the mental health of the people who work every day to support our heart kids.
At the 14:00 minute mark meeting co-chair Dr. Jason Buckley talks about preparing the recording of my session. During the meeting he had been at a con-current session and was watching my talk for the first time. His comment says it all. “I had to shut the door to my office because I was getting choked up and emotional, the way she told the story with pictures.”
Jason goes on to explain that at Christmas he was asked by his own family what exactly he does at the hospital and his response was…
“I think I just want to show my family Kristy Wolfe’s talk about her experience from a family member perspective navigating cardiac surgery, the recovery process and all that comes with it. Because she told it so eloquently, beautifully and honestly. And in a way that I could never tell it to my family members or others. I 100% agree with you that that [the family] perspective is incredible, motivating, invigorating and needed more of across all meetings in our field.“– Jason Buckley, PCICS Episode 76
Many medical families find support networks through social media platforms. Dr. Lillian Su referenced Stephanie Lewis’s session Risks vs Benefits of Social Media: From a heart mom’s perspective and went on to explain how @thrivingheartmom “uses social media to create digital communities so she can have other people who have gone through what she has gone through…I think the use of technology to be able to amplify everyone’s story, including yours Jason, and each of ours as we go through our everyday lives will help people understand just the different worlds people really live in.” It was a great reminder that regardless of your role in the PCICU we all have stories and sharing them creates connections
Complex Patients vs Pacemakers
I’m not entirely sure which of the eight people on the podcast referred to the idea of hearing the voices of less complex patient at the 17:00 minute mark but also resonated with me. She said “Making sure we include families of people who go through what we consider less traumatic ICU stays, it still is very traumatic. I think of patients who are getting a pacemaker. When I was going through training and in my early faculty years I always thought “it’s just a pacemaker”, but if you speak to one of these families of a child getting a pacemaker that is a life altering event, not just for the child but for the family as well. I think because of what we see everyday…we can sometimes lose that perspective.”
This is important. I have no idea whether Kane is complex or not. I recognize he is not the most complex kiddo, but I don’t know where he fits on the continnum of Congenital Heart Disease kids. It also feels complex to me. The recognition that every family has to come to terms with cardiac care is important.
Connect to Purpose
A final thought on the podcast…before moving on the the science and academic based portion of the recap, Jason Buckley finished with, “We throw around the phrase connect to purpose a lot and one of the folks who got up to the mic and asked the question after Kristy’s talk at the mental health session. She said she was a nurse for 30 years and she said, “Thank you you’ve revived me.” Immediately I thought about the situation so many of our hospitals are in with burnout and staffing crisis, not just at the bedside nursing level, I started thinking there’s real power here in the way this story was told. It was felt by the folks at the meeting and me just watching the slide presentation in my office.”
He was right it is so important for the people who do this work in such an intense field to see the patients and families living their lives outside of the hospital.
So here’s my plan…
I want to return to the PCICS Annual Meeting this year.
I believe there should be a contingent from Western Canada to highlight the work being done by the Western Canadian Children’s Heart Network.
Here’s my PCICS dream team…because if you don’t put it out in the world who’s going to know!?
- Dr. Ben Sivarajan, the Intensivist who invited me this year and I believe is organizing next year’s meeting
- A Western Canadian Children’s Heart Network representative, ideally Elina Williams who knows everything there is to know about WCCHN. She should be presenting on the work the WCCHN is doing to support families
- A cardiac ICU nurse or two or ten! Ideally this would include bedside nurses, nurse practitioners and the discharge coordinator
- Another CHD parent representative, ideally Kristina McGuire or Jen Siran who have completed digital stories that can be shared and discussed
- An young adult with CHD, again I’ve got thoughts but this will depend on the Boost Up Pitch (which by the way is coming up on February 9th Register Here)
- A Child Life Specialist, ideally Judy Doll
- Who else do you think should be there?
I recognize this is a big ask. Travel, accommodation and conference registration alone won’t be cheap, but the learning and conversations that could come from this would be worth every penny.