Faculty Receive Discovery Award for Project Highlighting Children with Medical Complexity

“‘Feels Like Home’: Lived Experiences of Children with Medical Complexity and Their Families,” an interactive audiovisual experience that will bring multiple audiences into the homes of children with medical complexity (CMC) and their families, has been named the recipient of a 2024 Discovery Award given to interdisciplinary faculty teams across Johns Hopkins University.

Led by Rebecca Seltzer, Assistant Professor of Pediatrics at the School of Medicine, and Lauren Arora Hutchinson, Director of the Dracopoulos-Bloomberg iDeas Lab at the Berman Institute of Bioethics, the project will result in three distinct outputs:

•  An audio documentary intended for broad public audiences that explores how families with CMC experience their home environment, a unique blend of hospital and traditional home;
•  A short film to immerse the viewers in how families with CMC adapt/build their home environment to meet their child and family’s needs, capturing both challenges and ingenuity;
• An interactive website to house the multimedia created and collected through this project.

“We envision the audio documentary and short film to be used on broader scales as teaching and advocacy tools. This could include incorporating them in medical provider training programs; using them as central discussion elements at conferences, panels, and live events; sharing short snippets in policy-making spaces,” said Dr. Seltzer.

The interactive website created during the initial phase will begin as a dynamic hosting platform for the audio and video deliverables and grow over time into a hub where audiences come to get resources and share their own stories.
The Discovery Awards encourage faculty from various disciplines to collaborate in addressing multifaceted challenges and pushing the boundaries of understanding. Altogether, the winning project teams—chosen from 286 proposals—include 148 individuals representing 11 Johns Hopkins entities.

“This project is an example of how the iDeas Lab can work with faculty from the outset of a project to envision and create outputs that will reach and immerse audiences beyond academia, getting them to think deeply and differently about topics,” said Arora Hutchinson. “The Lab has a team of creative producers – specialists in audio, video, and digital media who produce podcasts, videos, screenplays, films, and interactive projects – who look forward to creatively engaging with families with lived experiences on this important matter and making sure their unique perspectives are heard and shared.”

In addition, Abigail Brickler, a production assistant at the iDeas Lab, has experience as the caregiver of a parent with medical complexity and brings that important perspective to this project. Other key partners on the project include parent caregivers of children with medical complexity and the Johns Hopkins Disability Health Research Center.

“This project’s deliverables are both public-facing and family-centered, which we hope will foster feelings of community amongst similarly-situated families and promote a shared sense of humanity amongst audiences who perhaps were previously unaware,” said Seltzer.