Imagine harnessing the transformative power of digital narratives to navigate the complex world of healthcare. That’s exactly what we set out to explore in our latest episode, recorded live at the Children's Healthcare Canada conference. Joined by the insightful Pam Kai, Krystle Schofield, and Kristina McGuire—parents, caregivers, and seasoned digital storytellers—we dissect the emotional resonance of digital stories in health and wellness and their profound capacity to instigate change.
Throughout our conversation, we shed light on the evolution of storytelling and its role in amplifying the lived experiences of those with dual identities in the healthcare sphere. Our guests share their personal revelations and the impact of digital storytelling on audiences, revealing how these narratives have the power to breathe life into medical conferences and presentations. We celebrate the beauty of these stories in challenging and expanding our understanding of healthcare dynamics, encouraging listeners to consider the multifaceted nature of the caregiving experience.
As our discussion unfolds, we delve into the intimate nature of crafting these stories, the deep personal growth they foster, and the significance of finding the right moment and audience for their unveiling. In addition, we grapple with the complexities of funding, evaluating, and validating the tangible value of digital storytelling within the healthcare industry. This episode is not just an exploration of digital narratives but a testament to their undeniable impact on the well-being of families and caregivers, offering a fresh perspective on the intersection of storytelling and health.
Other Links Mentioned
About Our Guests
Pam Kai is a proud mother of 3 and resides in Calgary, Alberta. In 2014 her second child was born prematurely with complex medical needs, Pam’s life quickly changed as she was thrown into a world she wasn’t familiar with. Through that experience, Pam was asked to become a peer mentor volunteer at the Alberta Children’s Hospital (ACH) and since then has developed a passion for patient and family centred care, the value of sharing the lived experience and supporting families who are beginning a journey with a medical child. Pam was a part of the ACH Family Advisory Council from 2017-2023, serving as the co-chair for 3 years. She also sits on many other committees and has several volunteer roles including a
About Leading Through Stories
Everyone has a story to tell—and what we do with that story can create lasting impact. Every episode, Leading Through Stories, helps unravel the how and why of digital storytelling with host Kristy Wolfe.
Life is made up of meaningful moments—which ones do you want to share?
This podcast is presented by Common Language DST, digital storytelling facilitation training for health and wellness changemakers.
Don't miss an episode from Leading Through Stories!
Sign up for the Leading Through Stories newsletter, follow us on Instagram @LeadingThroughStories and subscribe on your favourite podcast platform.
Imagine harnessing the transformative power of digital narratives to navigate the complex world of healthcare. That’s exactly what we set out to explore in our latest episode, recorded live at the Children's Healthcare Canada conference. Joined by the insightful Pam Kai, Krystle Schofield, and Kristina McGuire—parents, caregivers, and seasoned digital storytellers—we dissect the emotional resonance of digital stories in health and wellness and their profound capacity to instigate change.
Throughout our conversation, we shed light on the evolution of storytelling and its role in amplifying the lived experiences of those with dual identities in the healthcare sphere. Our guests share their personal revelations and the impact of digital storytelling on audiences, revealing how these narratives have the power to breathe life into medical conferences and presentations. We celebrate the beauty of these stories in challenging and expanding our understanding of healthcare dynamics, encouraging listeners to consider the multifaceted nature of the caregiving experience.
As our discussion unfolds, we delve into the intimate nature of crafting these stories, the deep personal growth they foster, and the significance of finding the right moment and audience for their unveiling. In addition, we grapple with the complexities of funding, evaluating, and validating the tangible value of digital storytelling within the healthcare industry. This episode is not just an exploration of digital narratives but a testament to their undeniable impact on the well-being of families and caregivers, offering a fresh perspective on the intersection of storytelling and health.
Other Links Mentioned
About Our Guests
Pam Kai is a proud mother of 3 and resides in Calgary, Alberta. In 2014 her second child was born prematurely with complex medical needs, Pam’s life quickly changed as she was thrown into a world she wasn’t familiar with. Through that experience, Pam was asked to become a peer mentor volunteer at the Alberta Children’s Hospital (ACH) and since then has developed a passion for patient and family centred care, the value of sharing the lived experience and supporting families who are beginning a journey with a medical child. Pam was a part of the ACH Family Advisory Council from 2017-2023, serving as the co-chair for 3 years. She also sits on many other committees and has several volunteer roles including a
About Leading Through Stories
Everyone has a story to tell—and what we do with that story can create lasting impact. Every episode, Leading Through Stories, helps unravel the how and why of digital storytelling with host Kristy Wolfe.
Life is made up of meaningful moments—which ones do you want to share?
This podcast is presented by Common Language DST, digital storytelling facilitation training for health and wellness changemakers.
Don't miss an episode from Leading Through Stories!
Sign up for the Leading Through Stories newsletter, follow us on Instagram @LeadingThroughStories and subscribe on your favourite podcast platform.
That is the beauty of digital storytelling it can be a way to like, share an internal experience without having to stand up in front of people and tell your story over and over again.
Speaker 2:Welcome to Leading Through Stories, a podcast that explores the how and why of digital storytelling. My name is Christy Wolff, and each episode I connect with storytellers or common language digital storytelling facilitators to learn more about the health and wellness stories they are creating and sharing. Life is made up of meaningful moments. Which ones do you want to share? This podcast was recorded live during the Children's Healthcare Canada conference that took place in early December in Vancouver, bc. Joining me on the episode are Pam Kai, crystal Schofield and Christina McGuire. All of us are medical parents. Christina and Crystal are also common language digital storytelling facilitators. Christina and I were there presenting on a recent digital storytelling workshop that we had conducted. We presented during the transitions to adulthood pop up prior to the conference, and you'll hear us speak about that.
Speaker 2:You may remember Crystal from episode three of this season. She came on and talked about her own family's experience, as well as the digital storytelling work that she does with rare disease families. If you haven't listened to that episode yet, I would highly recommend it. Our newest addition is Pam Kai, and Pam is actually how I found out about Mike Lang and digital storytelling at the Children's Healthcare Canada conference in Ottawa in 2019. She was also presenting at the conference and she was kind of an integral family member at this conference. So you'll hear her speak to that a little bit. I do want to warn you that because we recorded in person, all four of us were in the same room, we were trying something new with my recording device and our voices are different volumes.
Speaker 2:I did as much as I could from the production side, but please just be aware that some voices may be louder than others. Enjoy, Hi friends. Hello, all right. How was day one, day one and a half of the conference for you?
Speaker 4:Busy. There was a lot of really great sessions that were hard to choose from and lots of wonderful people to catch up with. So, yeah, conferences seem to be social, educational, like a really crazy packed high school couple of days.
Speaker 2:Christina and I were at Kids Brain Health Network and we have a podcast recorded from that, so she already has experience doing this. You guys will have to catch up. Christina and I presented yesterday on digital storytelling and we used the stories two stories from the Western Canadian Children's Heart Network and Heartbeats Workshop so we shared Maddie's story and Victoria's story. What did you think?
Speaker 4:I was. I had goosebumps several times throughout the session because I was just so proud. I forgot how intense it was making those stories and the final product, how intense those were the emotions that came out of those. It had been a while since I watched those, so it was really. It was really wonderful to share and then watch the audience as they're taking it in and having the discussions Again, that's my favorite part is the discussions, even though we couldn't get them to stop talking several times, which is a good side, I think, but it was. It was really great being able to present that to a whole group of people who had no idea what they were getting into.
Speaker 2:Right, Both Crystal and Pam were there, so I'm going to ask you for your feedback on that session. But basically, when we run a session like this at a workshop or at a conference, we will watch a digital story, explain a little bit more, maybe talk about the process, watch another digital story, but there's always space for conversation so that people have a chance to talk about what resonates with them.
Speaker 3:So, crystal, yeah, the conversations were really rich at the table and you're right that we need more time to talk. They were just getting going. The interactivity of your presentation was really well done and there were questions after like for 25 minutes after the session. And so I think you know the introduction to digital storytelling stories. You share the conversation about people in it and like really thinking about it and feeling that process.
Speaker 2:I do find that people need an introduction to it, and so when I think about speaking at a conference or when I think about like an introductory session, it is really like here's a digital story, here's a little bit, but we can't get too far into the process because they're just learning what it is. Now Pam's with us as well, and Pam is how I actually know about Mike Lang and digital storytelling, because four years ago at Children's Healthcare Canada in Ottawa, I met Pam and Pam showed me her being there series that Mike had done. Will you tell people a little bit about that?
Speaker 1:I just wanted to say too, from the session yesterday what I found interesting is I think there's really becoming this shift in patient stories versus digital storytelling. I think through healthcare, especially at these conferences, we've always heard patient stories. But I think when you present digital stories and it just it hits a little bit differently, it pulls out the emotions a little bit different. So I think that's the really beautiful part of digital storytelling and in my experience four years ago I was like, yeah, absolutely, I'll do this. I'm always up for new experiences.
Speaker 2:Similar to how we talked to you into doing a podcast.
Speaker 1:Exactly, I was just thinking that. So four years ago I had the honor and I would say the honor because it really was that to share my story with Mike and to not only at the time I had no idea, but now, after learning more about digital storytelling have my digital story within the process of digital storytelling, which is a really unique twist on it. And so in that time and what I really got out of it was seeing my role as a caregiver different that I had ever seen it before.
Speaker 1:I had always identified up until that point as like Sawyer's mom, you know. And yeah, of course I'm caregiving for my son, but I never thought that the work that I did as a volunteer and a peer mentor was also caregiving. And so to have that perspective and to this day, like watching it and speaking about it, like I still get chills because it was so powerful and so empowering to watch my story through that lens yeah, Watching your episode is really something more than what a digital story is right, Because you see the whole process of it.
Speaker 2:You see you and Mike working together at the kitchen table. You hear more about, like the process. You see people coming over to your house to watch the digital story and then you watch the digital story and then you get a little bit of the conversation after that. All of these people had In that, like Christina has a digital story, Crystal has a digital story, I have a digital story and we can share those digital stories, but people aren't seeing the process that goes into it and that's a little different with what you have, because it goes through that whole thing and, although we all experience similar things to that, I don't have, like it recorded in any way to look back on. So I think that's something that's a bit extra special, because we talk about how important it is for our storytellers to get that feedback. We heard from people in the session Pam included about Maddie's story and what resonated with them, and Vittorio's story and what resonated with them, but we don't have that recorded for them.
Speaker 4:Actually, we do, because you recorded it when we did the online screening and we had people who were able to, you know, put their reactions in the chat. So that was like one of the first times that you had something to sort of copy and paste and send to them Like this is how it impacted people specifically. In a moment you can hear someone saying something oh yeah, I really loved this about your story, but then, if you four years later if you go back and look at it, it really does just you know, stir up those emotions again.
Speaker 2:So when we did the virtual screening for the Heartbeat Stories, people were writing in the chat and we took those comments and sent it to each storyteller. So even if they missed it in the chat, they would get those comments later and again, like Christina was saying, when you have a little bit of time to settle and sit with that. Pam, this morning your group presented and there were two digital stories in there and I didn't know that was happening until you mentioned it and I was so excited because we were talking about digital storytelling. We're trying to get people to think about how to have families tell stories where you're not putting them on stage necessarily. How did it feel watching, being there, your digital story in front of all of those people?
Speaker 1:It's always a neat experience, like Christina was saying, both the session and you know, showing those digital stories and then watching the reactions of the audience, and I always think it's the same. But this morning I was like really paying attention to how I was reacting, watching that. I was like really engaged with the story and like showing my emotions of, like you know, when Sawyer was doing certain things, I found myself I was kind of like laughing to myself on stage. So I was still really like engaged in the story.
Speaker 1:Even 40 years later where I've seen that hundreds of times and it's still like so impactful for me and it was neat to just share on that stage. I think you know four years ago when I had that, I was like one day I would love to, you know, share this story on the Children's Healthcare Canada stage. So to see that this morning on stage it just felt like a full circle, and to watch people's reactions too, it was I love it all.
Speaker 3:I love to see you share it and then just stand there and say, does anyone have any questions? Like that is. I think that's the magic of storytelling. Have you told your story orally before? Yeah, like how is that different?
Speaker 1:I think with the digital story, just because it's it's moving, it can be a little bit more impactful, just like with the, the imagery and the music, right like it ties everything together. For me, I find like vocalizing my story, which I've told many, many times in different settings, can still be powerful as well, but just finding the appropriate place to share those videos, Did it feel different for you to speak your story versus to share it?
Speaker 1:I think for me, the the difference is is like the visual part right, so I can, I can speak about it from my experience and stuff, but when they can see Sawyer or they can see the pictures of the cold blue, right, like I can't I struggle myself personally to put that into words of like what did that feel like or what did that look like, and so to have the imagery in the digital story just for me makes it a little bit more powerful and it does feel a little bit more impactful, I think.
Speaker 2:There was another digital story within that group of presentations that I hadn't seen before and it was a physician who's also a caregiver, and that story that was made with Imagine Citizens collaborating for health and Mike Lane. So had you seen that story? No, and what about? Okay? So what were your feelings watching that one? First, off.
Speaker 4:It's the lens that I look through now is how do they make that story like? What was the the technical process of making that story? So I I can't turn that off now, now that I know the choices that go into each transition, each picture, each. You know the sounds and music, and so I looked at it like that first, and then I was able to just turn that off and listen to the story. It was very surprising for me because it didn't have a really typical storyline, right, like it didn't have that story mountain thing to go along with it. It was just little bits of information that were dropped here and there, and putting it all together was like a puzzle at the end. And then it made sense, right. So it was like one piece would sort of reveal itself in the story and then another one, and then at the end you saw the full picture. And that's when I fully appreciated whole part of the story. Crystal, what about you?
Speaker 3:The one thing that I've noticed about this conference in general is just that there have been so many stories.
Speaker 2:There are always so many stories at these conferences.
Speaker 3:Yes, so maybe that's me and I have been to a conference where there were any stories Okay. So I feel like I feel very excited that they're being integrated and not just by storytellers.
Speaker 2:They're being integrated and used to introduce subjects in a topic area that bring feeling to things. So Nickoelle's story I thought was really interesting and partly because so many times we think of bringing patient and caregiver stories to conferences like this, and Nickoelle's story was family caregiver but also physician, and I think that brings a different lens to things. Christina, you have a story where you are looking at it from a mom as well as a nurse, and I think there's power in being able to show multiple perspectives when you're coming to a conference like this, because people are used to hearing patient stories and you almost needed to come from their own angle. So you want different stories to be coming forward, and that's one of the things I really liked about her story. I mean, her story is wonderful. She talks about her son's journey and then talks about leaving medicine to support him and then coming back to medicine later. But she also asked questions about how can I be in a medical system like this, and that's not exactly the word she used, but she was recognizing that if she couldn't support her own child, what was that like for the medical system? How was she going to help anybody else?
Speaker 2:And I think that's something interesting that happens when you do a digital story as compared to telling a story on stage. Telling a story on stage, you're trying to tell everybody all of the things, whereas when you focus on a digital story, you have time to reflect on that short piece of writing and come back to it and think about some of those connections and think about some of those metaphors and you really do massage it into a story that is quite succinct. I do think there's a big difference, as you were saying, between having somebody stand on stage and tell a story and having them create something like a digital story, where there's quite a bit of time that goes into preparing that and getting it ready.
Speaker 4:I think people are expecting something to come of it. They're expecting a certain pattern or formula to come out of the story, and I think with a lot of the stories that we're doing now, we're discovering now, they're not formulaic and they really can sort of be perceived in different ways. But people know what to expect with like a three to four minute video. They know what's going to look like this and it's like TikTok or it's like YouTube, so they're familiar with it. So we have to have a formula, but the way that we tell the stories is completely unique each time and I think that's really interesting. Yeah, that's like the facilitation of it.
Speaker 3:right, it's a discovery process all the way through until you get it complete, really, because even when you have the story written, then you're still bringing in the imagery and the music and the pacing of it. It's like an evolution throughout the whole thing until the final product.
Speaker 2:And like we're sitting here with one person that's done a digital story Pam, you've done two digital stories. Pam's done two digital stories. Now I have to learn about that, but in a second. Christina is a level one digital storytelling facilitator, so she does one on one and she's created her own two. And then Crystal is a level two digital storytelling facilitator, so she works with people in workshop as well as co-creating. And how many of your own stories have you created? I'm just going to stop guessing.
Speaker 3:Oh, one story I've created too.
Speaker 2:So we have all of these different perspectives on it. Sorry, Pam, what's your other digital story?
Speaker 1:I created a second digital story with Christina, I think. Anytime I am asked to share my story or do these things, it's a huge honor. So I had the honor of creating a second story with the lovely Christina when you were doing your training.
Speaker 2:Yes, okay, she was my volunteer, got it. I was. When we did the podcast from KBHN. Melanie was my very first volunteer and that was who was on with us, and now we're having this one at Children's Healthcare Canada and this is Randall. So how is?
Speaker 3:it different. I want to know how did it come different the second time?
Speaker 2:Well, you already knew the process, which is one part of it.
Speaker 3:There's so many stories we can tell in every experience. Yeah, did you focus on something different?
Speaker 4:Yeah, yeah, take me, let me know how I did, because we never really talked about the process.
Speaker 1:This is great. It was a different story, it wasn't? It actually had nothing to do with Sawyer. Well, I guess it sort of did. We chose something different and I took it as an opportunity to dive into something different because yesterday in the digital storytelling session like you guys talked about, you know, I had people all think about what story would you tell? I think personally, because of the digital story experience that I've had, I think about, like, what is my story?
Speaker 1:and I don't think a lot of people do right, like even at our table, one lady was like talking about her daughter and you know I was the question like, well, maybe that's your story. Through an experience you had with your daughter, I did take my time with Christina to dive into something different and it was cool to do the process again and I kind of also took it as an opportunity to see if that would be something that I might want to do down the road and become Like take the, the training. I think it turned out beautiful and I'm not sure if I'm like totally ready to share it and also I think it is important to share and I want to share it.
Speaker 2:So yeah, finding the right time finding the right time and the right audience.
Speaker 2:Sharing it doesn't need to be Publicly, it can be in a smaller setting. I actually was going to ask are you comfortable if we put the link to being there in the show notes for this episode? Oh yeah, and then I won't ask now because I know like we don't need to share that story. So that one, when you are ready to share it, I would love to talk to you more about it, but it doesn't need to be right now and it can be just for your family.
Speaker 1:Yeah, and I think I mean I have no problem sharing it because I think, like I'm proud of it and I'm proud of the work that we did together. It's just one of those ones. It's something that is not visible. Mm-hmm, it's not a visible thing that people would see it.
Speaker 1:It's not a visible experience that I had, like I did with Sawyer, where there's a tracheostomy that people can see or there's, you know, a medical Journey that people walked through with me. The story that I did with Christina is a very personal internal experience that I had after my experience with Sawyer, and so, yeah, it just sits differently. Yeah, but I think I think we created a beautiful story and I don't say that just because it's mine and I think it's an impactful one. It's just different. Yeah, that is the beauty of digital storytelling it can be a way to like, share an internal experience without having to stand up in front of people and tell your story over and over again.
Speaker 2:One of my early stories with a friend was around her family. Her husband had a brain tumor and they decided to do a digital story of his voice to their kids, talking about being a dad, knowing that he wouldn't be around for a long time. So that story has never been shared publicly. It's their family story. But we did talk about it at the Edmonton screening. She came and I said would you like me to address the story, as we're talking about the ways that you can keep it private If you choose to? And she was like, yep, I'd love if you put a picture of our family up as you're talking about how this story was meant for this family and meant for these kids so that they would hear their dad's voice. And it was. I mean, we're here at a conference and we're talking about getting people to think about.
Speaker 2:Does digital Storytongue fit in your work for sharing what families and patients and researchers and clinicians are Learning and living? But all of those stories, they don't need to be public. They can be that story that you do for the process of creating the story or the product for a very particular purpose, and so I would say do not share your story until you want to share your story and sometimes Putting it just on YouTube is not the way it's meant to be shared, and I did find that when we were doing our session, people had questions about that, especially because when an organization thinks about funding a story, they want the story, and we were very clear about the fact that the storyteller owns the story. And although in our example and and I'll use that just so it's easier on people Heartbeats children's Society of Calgary was the group that was working on the stories with people that were connected to their Organizations, and it was funded by Western Canadian Children's Heart Network, neither of those two organizations own the stories.
Speaker 2:The story belongs to each storyteller and at the end of the process, they decide how it's used. Each of the storytellers decided that both organizations could use it, but we cannot guarantee that. We cannot guarantee what a story is going to look like, and I think that's something to put on the table right off the bat, because it is so important to be aware of who our storytellers are, to care for our storytellers and then to protect their story until they're ready to share it.
Speaker 4:That was one thing, that Speaking with one of the attendees for the session so she came to it with a bit of this mind and it was really interesting because I hadn't really thought of it that way I knew I mean, we all know it's, it's the digital storytellers property. They can do whatever they want with it. And so she started to talk about well, as an organization, how is this going to benefit us? Say, we fund 10 stories and we only come up with two. Those are obviously wonderful stories, but the rest of those stories, what does that mean? And so she sort of left that open and wasn't what does that mean for the organization?
Speaker 4:She said well, what does that mean for the patients and families and how they interact, and will that benefit their well-being, their relationship with the organization? Will it produce something positive out of it? So that's a whole different return on investment that people aren't really thinking about right off the bat. They initially hear or you may not get a story, and so with those additional stories, even though what they're not public and they're not property, they have created a different experience with the patient and family that maybe they can share somewhere else. It's not an immediate benefit, but there's a long-term benefit for multiple people, multiple organizations for that, but I I still have a hard time having to sell it to people and say it's worth investing doing this.
Speaker 3:You're talking about the intangible part of digital storytelling right, you're talking about. How do you measure the investments, the impact, which is something we've been talking about a lot. How do you measure it?
Speaker 2:And it was a question that came up in the session like, from a research perspective, how do we prove that this was helpful for?
Speaker 4:families, and so the person that I was speaking with said I liked the answer that digital storytelling, in this context, is in its infancy. We know that it works. We have a small group of people who are 100% behind it and think it's impactful, and think it makes a difference and will change the way we do things. It's just a matter of duplicating that and sharing it again and again so that other people can see. It's just not a one-off, it's just not a couple of random good stories. It is actually a process, a methodology that creates something wonderful.
Speaker 2:Well, and I would argue that Mike has already done that, but we need to prove it ourselves in the arenas that we work in Having three different brains.
Speaker 4:There's your logical brain, your skull brain. There's your heart brain, which is your feelings and your emotions. But then there's also your gut brain, which is your intuition right it's, you can just feel something is right. So we've done the gut, We've proven, we know this is right. We obviously have the heart covered. Now we need to prove the skull brain, we need to prove that logic saying yeah, it's not just a feeling.
Speaker 2:So I'd like to direct you to Mike Lang's research. I will put a link in this podcast episode so you can find it, but his PhD is on digital storytelling in the healthcare setting. There's methodology papers. There's quite a few different papers, and so I think that's a starting spot before we jump into what's next. Everyone has a story to tell. We would love to hear from you. We always include a link to the stories we're talking about in the episode show notes. Please let us know what resonated for you in today's episode. Your comments will be passed on to the storyteller. You can email us at LTSPodcast2023 at gmailcom, or find us on Instagram at leading through stories. Leading Through Stories is sponsored by Common Language Digital Storytelling Facilitator training for health and wellness changemakers. Don't miss the next episode. Subscribe to Leading Through Stories on your favorite podcast platform.