Leading Through Stories: Storytelling in Congenital Heart Disease Care

In a world where healthcare often seems impersonal and daunting, the art of storytelling emerges as a powerful means to bridge the gap between patients and providers, offering a sense of humanity amidst clinical settings. The latest episode of our podcast presents an enlightening conversation with Vittorio Borrelli, a man whose life is a testament to resilience and courage in the face of congenital heart disease (CHD) and cancer.

Vittorio’s story is not just about the medical battles he has fought but about the personal identity he has forged through his experiences. His narrative encapsulates the struggles and triumphs of living with CHD, the complex journey from pediatric to adult care, and the unexpected turns that life can take when you are a “heart kid” turned adult. The episode poignantly illustrates how digital storytelling can be an educational and empathy-building tool that transcends the traditional patient-healthcare provider dynamic.

The podcast delves into the creation of digital stories as resources that capture and convey the essence of patients’ experiences, often with lasting effects. It explores how Vittorio and others have used storytelling workshops to connect with their peers, leading to transformative realizations and deepened community bonds. This particular retreat in collaboration with Heart Beats Children’s Society of Calgary and Western Canadian Children’s Heart Network offered a unique opportunity for adults with CHD to share their life experiences, shedding light on the often overlooked adult perspective in CHD care.

During the episode, listeners are taken on a journey through the landscapes of healthcare and personal identity, uncovering the remarkable ways in which stories can influence perspectives and incite action. The conversation reveals how narrative medicine is not only a therapeutic tool for those telling their stories but also a means for listeners, including clinicians and families, to gain insight into the lived experiences of individuals with CHD.

Digital storytelling is also praised for its practicality, as it provides easily shareable content for events and awareness campaigns, engaging audiences without the need for extensive preparation. The podcast highlights Sickboy podcast host, Jeremie Saunders’ memorable recollection of Vittorio’s story that left a significant impact on him, showcasing the effectiveness of digital storytelling in healthcare.

As we listen to Vittorio recount meaningful moments from his life, we are reminded of the lifelines that storytelling can provide in the context of health and wellness. Whether it is Jacqui’s memorable visit to the Libin Heart Institute or Maddie’s evolving narrative during the storytelling retreat, the episode underscores the unexpected and powerful ways stories can resonate with us.

The episode concludes with an invitation to the audience to consider their own stories and the moments they would like to share. It encourages listeners to think about the power of storytelling in their own lives and in the healthcare landscape, highlighting the potential of digital narratives to craft connections, foster understanding, and promote healing.

The blog post above captures the essence of the podcast episode, “The Lifelines of Storytelling in Congenital Heart Disease Care,” inviting readers to listen and engage with the transformative power of storytelling in the context of congenital heart disease. With a focus on digital narratives, the episode offers a heartfelt exploration of the role stories play in connecting individuals, educating healthcare professionals, and strengthening communities affected by CHD.

Learn more about how Heart Beats used digital storytelling to increase impact here.

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?

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Digital Stories in Community-Based Research with Carolyn Brandly – Co-Created

A single well-told story can do what a stack of reports cannot: make someone feel the reality of living in a body, a system, or a diagnosis they’ve never had. We sit down with Carolyn, a newly trained Common Language Digital Storytelling facilitator and PhD student, to unpack how digital storytelling becomes a practical tool for health research, quality improvement, and stigma-breaking conversations.Episode Key Messagesrecreation therapy roots and building community programs for older adultsresearch and quality improvement as tools for systems change in long-term carediscovering Common Language through MAID digital stories and stigma reductionchoosing a more personal story and learning facilitation through vulnerabilityliving with disability, wait times in Canada, and rebuilding identity after surgeryKilimanjaro as a turning point for confidence, aging, and capacityadapting digital storytelling for people living with dementia in a PhD protocolco-research, simplified materials, slower pacing, and practical accessibility tweaksmaking a first volunteer story with her mom and deepening connection through memoryrecording voiceover many times and small changes that amplify a storyteller’s voiceinformed consent, sharing implications, and the ethics of public storytellingchallenging ethics board assumptions and shifting to assumed capacityrights-based approaches to dementia in public spaces and collaboration invitationsOther Links MentionedRead this episode's blog postWatch Carolyn's StoryWatch Marg's StoryLearn more about Fostering Inclusion for People with DementiaLearn more about Carolyn's work with Dementia Connections and PhD researchOther Episodes MentionedEpisode 37 Disrupting Death: Stories of MAiD with Kathy Cortes-Miller and Keri-Lyn DurantEpisode 52 The Storyteller’s Yellow Pages with Lisa JoworskiEpisode 57 What Changes When We Treat Stories Like Data with Dr. Katharine SmartAbout Our GuestCarolyn Brandly has worked with and for older adults and people with dementia for 20+ years in care and community settings – designing, implementing, and evaluating health promotion programs, and facilitating community development, knowledge translation and quality improvement initiatives and research. Carolyn has achieved an MA in health leadership, as well as completing graduate-level education in dementia studies, gerontology, and entrepreneurship, and is currently undertaking doctoral studies through the University of Victoria’s Social Dimensions of Health Program. Her aim is to contribute to global efforts shaping inclusive health and social systems that uphold the human rights, autonomy and dignity of people living with dementia. Hosted on Acast. See acast.com/privacy for more information.

1. Digital Stories in Community-Based Research with Carolyn Brandly 30:02
2. Using Digital Stories in Clinician Training with Dr. Tricia Williams 30:41
3. Digital Stories Belong in Curriculum & Communities with Dr. Mike Lang 29:05
4. What Changes When We Treat Stories Like Data with Dr. Katharine Smart 26:36
5. Through Her Lens: Cameras For Girls with Amina Mohamed 24:36

Common Language DST facilitator trainings are open for registration.
Learn more here.