Amplifying the Caregiver’s Voice
“The CLDST collective offers a place for people to process, create, and speak from the heart, without needing to translate their experiences into clinical language or advocacy jargon. It’s a place where storytelling becomes solidarity. ”
As the parent of a child with a congenital heart defect (CHD), CLDST Facilitator and mother, Jennifer Siran has learned firsthand how deeply the caregiving journey shapes a family’s life. Not just physically, but emotionally, mentally, and socially. Over the years, she’s come to recognize that while clinicians and researchers work tirelessly to improve outcomes for children with CHD, the voices of those who care for these children every day, parents and caregivers, are often underrepresented in the conversations that shape care and policy.
That realization led her to begin advocating for caregivers in the pediatric cardiac community. Her goal has been simple but vital: to ensure that family experiences are not just heard, but valued, in shaping health systems and support for our children.
Digital Storytelling: A Tool for Truth and Connection
Through the Common Language Digital Storytelling Collective (CLDST), Jennifer had the opportunity to co-created a digital story with CLDST facilitator Kristy Wolfe. Her story captures the emotional truth of parenting a child with CHD. This opportunity to work with a trained facilitator introduced her to a practice that now deeply shapes her voice and direction.
The process was both healing and empowering. It gave shape to experiences that are often invisible or minimized, and it provided a platform to share those realities in a way that resonates deeply with both families and professionals.
More than that, Common Language has become a meaningful space where Jennifer can connect with others and support caregivers through creative expression. In June of 2024, she took her Level 1 Facilitator Training and joined the collective as a digital storytelling facilitator empowered to help others tell their stories.
Advocacy As Community Building
With support from the Western Canadian Children’s Heart Network (WCCHN), Jennifer created Caregiver’s Corner as a way to bridge the gap between medical care and lived experience. This multi-media resource kit highlights stories from a parent’s perspective, providing practical resources and fostering community among families navigating the complexities of congenital heart disease (CHD). It has become an important storytelling and resource initiative that shares the realities, challenges, and wisdom from CHD caregivers.
This project has fostered collaboration with both medical professionals and fellow parents, reinforcing the idea that we are stronger and more effective when we work together across the divide of “expert” and “experience.”
Caregiver’s Corner received honourable mention at the 2025 PRiME (Partnering for Research Innovations in Mental Health) Conference in Winnipeg, MB. The project was also highlighted in the poster hall this fall at the Cardiac Neurodevelopmental Outcomes Conference (CNOC), in Denver, CO. This marked an exciting step forward in making caregiver perspectives part of the academic and clinical dialogue.
Jennifer Siran is a Level 1 CLDST Digital Storytelling Facilitator, Author and Congenital Heart Disease Advocate. She is committed to helping others tell their stories, and to nurturing a culture where personal narratives are recognized as powerful tools for healing and change.
