Leading Through Stories: The Role of Personal Stories in Research

by | Jul 8, 2024 | Blog, Digital Storytelling

Leading Through Stories Blog - feature

Leading Through Stories: The Role of Personal Stories in Research

In the latest episode of the Leading Through Stories podcast, we delve into the transformative power of digital storytelling in maternal and pediatric research. Featuring special guest Sara Pot, a parent partner with CanChild at McMaster University, this episode sheds light on how personal narratives can foster trust, empathy, and meaningful partnerships between researchers and families.

Digital storytelling has become a cornerstone in a new curriculum designed for researchers in maternal and pediatric health. By integrating authentic, personal stories into an asynchronous learning environment, the curriculum creators have made the educational experience more engaging and relatable. This approach honours the lived experiences of patients and families and enriches the learning process, making it deeply personal and impactful.

In Partnership With:

Kristy Wolfe Storytelling - Client - IMPACT
Kristy Wolfe Storytelling - Client - CanChild
The journey of digital storytelling in this context involves a delicate balance between sharing personal stories and ensuring the welfare of the storytellers. Informed consent is a critical aspect, both at the beginning and end of the storytelling process. The empowering experience of virtual screenings allows storytellers to share their work and engage with feedback, further enhancing the value and impact of their stories. This ethical consideration ensures that storytellers retain control over their narratives and can retract them if personal circumstances change.
The discussion centers on the vital role of storytelling in building trust and empathy within research partnerships. Sara Pot shares her insights on family engagement in pediatric disability research, emphasizing the importance of collaboration between researchers, family partners, and individuals with lived experiences. She highlights a specific project with IMPaCT – Increasing Capacity for Maternal and Pediatrics Clinical Trials where digital storytelling was integrated into an asynchronous curriculum, making the learning experience more engaging and relatable.
The conversation moves on to explore how digital stories have become integral to the curriculum. Initially intended as companions to learning, these stories have evolved into capstones around which course content is developed. By featuring compelling digital stories shared by volunteers, the curriculum creators have enriched the learning experience with personal narratives followed by reflective interviews. These stories, accompanied by academic readings and reflection questions, facilitate authentic engagement and honour the lived experiences of storytellers.

Fabiana shares her story of engaging with research to include the parent voice after her own experience in the NICU with her premature son.

The focus of the podcast shifts to the delicate balance between storytelling and the well-being of storytellers. The importance of informed consent and the significance of virtual screenings are discussed. These screenings allow storytellers to share their work and engage with feedback, enhancing the value and impact of their stories. By empowering storytellers and ensuring they remain part of the conversation, digital storytelling becomes a powerful tool for personal and communal growth.

Ngawai shares her experience of engaging in research to navigate the care she required to support her pregnancy while living with epilepsy.

The episode delves into the profound impact of storytelling and the importance of maintaining consent and ownership over personal narratives. A storyteller’s experience of overwhelming positive feedback from her community is highlighted, showcasing the far-reaching influence of shared stories. The value of digital storytelling is emphasized, particularly how it keeps the storyteller in control throughout the process. The complexities of public sharing and the right to retract stories when personal circumstances change are also discussed.

Ofélie shares her story of growth and empowerment as a youth living with Spinal Muscular Atrophy.

Throughout the episode, the integration of digital storytelling into the curriculum is explored in detail. By embedding personal stories into the learning material, Sara and her team have made the educational experience more engaging and relatable. The use of reflective questions and academic readings further enhances the learning process, allowing learners to connect personally with the material and draw meaningful insights.

About our Guest

Sara Pot is a parent of four, including two medically fragile teens who require complex care specific to their diagnosed disabilities. She works for CanChild, a research center focused on pediatric disability housed within McMaster University in Hamilton, Ontario, as an educator and facilitator focused on developing patient and family engagement.

Connect with Sara via email: pots@mcmaster.ca Read some of Sara’s writing here and here.

About the Project

The digital stories discussed and included above were co-created by patient and family partners specifically for a self-paced open access online curriculum focusing on Family Engagement in Research in Maternal and Pediatric Clinical Trials in partnership with Increasing capacity for Maternal and Paediatric Clinical Trials (IMPaCT) training network and CanChild’s Family Engagement in Research Program

Storytellers: Ofélie, Ngawai, Fabiana, Trinity
DST Facilitators: Kristy Wolfe & Krystle Schofield

All IMPaCT curriculum will be available open-access (free!) on RISE to anyone who registers. Register for RISE here.

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