Family-Led Academic Grand (FLAG) Rounds: Family stories as a tool for teaching patient and family-centered care to medical trainees

By Charlene N. Rivera-Bonet | Waisman Science Writer

The lecture took place in an auditorium full of pediatric medical trainees, and attendings, but Cara Coleman transported everyone in the audience into a clinic waiting room with her, her daughter Justice, and the receptionist. With specific and very intentional details, she described her surroundings, her thoughts, emotions, her daughter’s distress, and the conversation that went on that morning she experienced one of many instances of ableism in the pediatric care of her daughter. “Can’t you just change her and do that stuff on the floor in the open bathroom?” the stern receptionist asked. Eight-year-old Justice, who had congenital anomalies that led to multiple disabilities and complex medical needs, was there for a long-awaited appointment, which was running 40 minutes behind. She needed to be catheterized and changed.

The receptionist’s solutions were for Coleman to lay Justice down on the bathroom floor in the lobby of a major children’s hospital or take her home – neither a reasonable solution. Coleman said she could change her in the trunk of her car but that would be a minimum of 45 minutes. What if they got called? “Well, then, you miss your appointment,” was the answer she was met with.

Coleman and Justice decided to wait.

After narrating this instance of ableism – discrimination or prejudice against individuals with disabilities – Coleman brought everyone back from that hospital waiting room and into the auditorium again. Her and Justice’s story set the foundation for the discussion that followed: expectations, legal standards, and the American Disability Act in pediatric health care of children with complex medical needs.

This was the first of five Family-Led Academic Grand (FLAG) Rounds, national, quarterly educational sessions done in collaboration between the University Center for Excellence in Developmental Disabilities (UCEDD) at the Waisman Center, the Department of Pediatrics at UW-Madison, and the Bluebird Way Foundation. FLAG Rounds were developed by Coleman and Danielle Gerber to use family faculty, or family members of children with complex medical needs as lecturers, and storytelling as a strategy to develop the knowledge, skills, and attitude in medical students and providers to dismantle ableism in pediatric care and partner with families in the care of their children. Each round is presented by 2-3 different family faculty, starting with their stories, and ending with their lessons.

Family faculty and storytelling are key parts of FLAG Rounds. “Having family faculty lead grand rounds sort of turns grand rounds on its head a bit in terms of what the usual expectation is and that’s very unique,” says Heidi Kloster, MD, associate professor in the Department of Pediatrics and FLAG Rounds advisor. Medical grand rounds are a formal method of medical education in the form of meetings in which healthcare professionals discuss and learn about clinical information. In FLAG Rounds, family members of children with medical complexity are the experts. “The heart of FLAG Rounds is using family stories,” Coleman says. They wanted to use an already established system and flip it a bit to expand the role of families in medical education.

“I think it is a humbling experience because we get too used to, in a medical training situation, just learning from peers and those that may be hierarchically above us when there’s great teachers in every level of what we experience,” says Rachel Streckert, MD, pediatric chief resident in the Department of Pediatrics at UW-Madison who works in complex care and attended FLAG Rounds.

Coleman and Gerber, who is a family engagement specialist in the UCEDD, share a passion for patient and family-led care. This is an innovative approach that involves providers collaborating with patients and families at all levels of healthcare, and “understanding that our patients and families bring with them lived experience and expertise and knowledge that is just as important as the expertise and knowledge of the clinical care,” says Darcel Jackson, FLAG Rounds family faculty.

During the first FLAG Rounds, Gerber followed Coleman in sharing her experience with her son Jack, who was born with a genetic condition that caused intractable epilepsy and developmental disability. She narrated a day when Jack was having a “straight-forward” procedure to remove a mass from his chest. Five hours after what was supposed to be a 2-hour procedure, Gerber and her husband were paged. Everyone in the auditorium was transported into the PACU (post anesthesia care unit) where the Gerbers stood next to four-year-old Jack’s bed, with all the medical equipment beeping. Jack was in pain and his parents could see this, but no one else could. The anesthesiologist was so focused on getting his oxygen levels under control, he could not hear Gerber repeatedly say that Jack was in pain.

She pressed. “We can’t force that [bipap] mask on him when he is like this, it will only distress him more,” Gerber narrated. The doctor insisted that he had already given him pain medication and his priority was to get his breathing under control. It was protocol, he stated. “I don’t see your child showing the type of pain response that would indicate that he is in pain to the extent that I would alter protocol.”

Gerber spoke up. She knew Jack was in pain and his breathing wasn’t going to be controlled until that was addressed. After a few rounds of pain medication, his breathing stabilized.

Back at the auditorium, Gerber went on to talk about the lessons to learn from her and Jack’s story.

After Jack’s passing in 2020, Gerber spent a lot of time thinking about what went well with his healthcare and why, and what could she do with that knowledge. She developed a passion for medical education, and after training through the Leadership Education in Neurodevelopmental and Related Disabilities Program at the Waisman Center, she started work designing curriculums for medical education that included lived experiences from her and many other families.

Coleman was very familiar with the power of storytelling. She wrote a children’s book about her daughter called “I am Justice, Hear me Roar!” which she and her daughter used to educate others about disability and inclusion. Stories “connects us as humans,” she says. For Gerber “stories have a way of making you feel things, and the hope is that when you feel something, you’re able to take a moment to reflect on what you are feeling and why. So then pairing that with a strategy [for family-centered care], that’s the heart of what we’re trying to do with FLAG Rounds,” Gerber says.

In order for these stories to be effective in delivering a medical lesson, family faculty go through months of training in medical education competency. “Cara and Danielle have designed their curriculum for the family faculty in such a way that they have a deeper understanding of the training that medical providers go through, and that, I think, lends itself well to allowing them to craft stories and teaching points that really hit home,” Heidi Kloster says.

“This is the first time that I’ve been in a role that does that capacity building for the family advisors to understand the perspective of the residents and medical providers and the education they go through including how the education system can be dehumanizing to the providers. So that was really neat to establish some common ground there,” says Lisa Treleaven, FLAG Rounds family faculty.

Treleaven shared her and her daughter Juniper’s “June” story during the second FLAG Round, under the topic of “Say What? Language Matters.” June who is 11 years old, is medically complex with a tracheostomy, heart condition, epilepsy, and an undiagnosed genetic condition.

Treleaven has experience with advocacy and advisory roles giving the patient/family perspective to entities that are involved in health care. She is no stranger to teaching and advocacy, and unfortunately, no stranger to ableism. During FLAG Rounds, Treleaven and two other family faculty shared their stories and the lessons to be learned from them regarding the importance of language in the care of children with medical complexity. Each story shared took months to develop.

Each group of family faculty had a writing coach that helped them get their story down to the right length and the right tone. They also had to think about how to integrate the competencies and teaching points required to make it a grand round. “There was a lot of editing and a lot of group work to shape these stories,” Treleaven explains.

For Darcel Jackson, this process really helped her feel more confident that the story would resonate and land well with a larger crowd, specially a story in which she had to be vulnerable.

Jackson’s FLAG Round was entitled “The Compass We Carry.” It included stories from three families that involve diagnostic overshadowing, end-of-life decision making, and defining dignity and share strategies around uncertainty to ensure alignment between families and providers.

For 18 years, Jackson and her family navigated a journey of the unknown with her daughter Anniyah, who was born with mosaicism for trisomy 8 and 18, two rare chromosome abnormalities that impacted her full body system and organs. Something they knew for sure, is they wanted her to have a great quality of life.

During her lecture, Jackson talked about her experience having end-of-life conversations with her daughter’s providers. “I think for me, how it ties into ‘The Compass We Carry’ is that families and medical teams may not always be heading in the same direction. [Everyone] wants the best outcomes. But the best outcome may not look the same,” Jackson says. “For us as a family, the best outcome wasn’t keeping her alive year after year after year, totally dependent on technology and on equipment for survival, if we were going to be losing her ability to smile, we’re going to be losing her ability to be aware of the world around her and interact.”

Jackson’s hope is that everyone who attends FLAG Rounds leaves recognizing that family expertise is needed and important, and that families are an integral part of the care team. “I believe our lived experience is also clinical experience, and so the more that our clinicians themselves understand that, the more they’ll hopefully see that we are an equal part of the care team,” Jackson explains.

Treleaven hopes that clinicians will see the common grounds with families when it comes to the medical world. “My hope is that it will be humanizing for patients and families. That it will give [providers] that lens to see through and hopefully connect to their own experience too. That in the same way the healthcare education and system can be dehumanizing to providers and it’s a challenging environment for them…it’s challenging in those same ways for patients and families, and that we can partner together to shape the system.”

For Kloster, ableism arises when people are in situations they don’t understand or make them uncomfortable, and instead of leaning into the discomfort they lean away, contributing to treating the children and families in a way that is ableist. “And what I hope that FLAG Rounds will do is increase awareness of how impactful and painful those experiences are and how much they detract from the care that we’re able to provide our patients.”