By SHANNON O. WELLS
No matter how much support from family and the community may be available to them, parents who lose a child to a fatal disease often find themselves feeling — at one point or another — alone and isolated in their experience.
That is the area that “Visualizing Loss,” a Pitt School of Public Health study and film project, has sought to explore and share in depth.
“This is the population who feels very unseen, who feels very forgotten,” said Betsy Hawley, executive director at Pediatric Palliative Care Coalition (PPCC), a key collaborator with Pitt researchers on the project. “It’s really scary to talk to parents who have lost a child. So oftentimes they are left alone in their grief.
“To enable them to tell their own story from the very beginning was just an exciting prospect,” she added, “and I was interested in seeing what kind of therapeutic tool it could be for these families as well.”
Hawley worked with Pitt Public Health researchers Jessica Burke, vice dean and professor of behavioral and community health sciences, and her departmental colleague Sara Baumann, an assistant professor, on “Visualizing Loss.”
The study behind the project was supported by an advisory board comprising palliative care experts, health care providers, a study participant representative and a trained social worker.
The resulting series of poignant, emotionally powerful films follow five Pennsylvania families navigating the grief process that accompanies the death of a child as a result of rare genetic diseases. Their stories and journeys were expressed through collaboratively created films and analysis sessions.
Hundreds of viewers took part in a virtual premier of the films last November, followed by a panel with the collaborative filmmakers. Collaborative filmmaking participants are trained in basic filmmaking technology and techniques before making their own films based on researchers’ questions.
“Sara and I both believe when we developed collaborative filmmaking that it was a useful tool for research,” Burke said.
“What can we learn by putting cameras into the hands of the people that we’re trying to learn more about? To have them not just tell us their stories, but for us to be able to see their experiences — to create something visual.”
Hawley said many researchers she’s worked with around the country have sought out the unique combination of “what’s hard and what’s helpful” that Burke and Baumann brought to fruition.
“As you can see from the films … each family’s story is each family’s story,” Hawley said. “The way people walk through their grief is very individual. This turned out to be because it just put it all in their hands.
“It turned out to be a really effective way to get to the root of that problem both from a research standpoint — I’m excited to see papers that might come out of analysis — but also from an advocacy standpoint,” she added. “It was really a fantastic project.”
Baumann, who completed her doctoral degree at Pitt in 2019 and joined the faculty in 2021, said the collaborative filmmaking approach was developed through working with her doctoral dissertation committee.
“I always dreamed that we would be able to apply the method to various topics and places to understand complex health issues and experiences,” she said. “So it was an absolute dream that we were able to naturally develop a project with that did just that, on such an important topic as grief.”
As someone who experienced loss at a young age and benefited from art therapy, Baumann said she thought collaborative filmmaking could have similar effects. “I was interested in exploring if collaborative filmmaking could be used as a therapeutic tool, beyond research and advocacy.”
Raw, powerful films
Since their initial work in 2017-18, the researchers started to focus on the “intervention,” or what Burke called the “therapeutic effect” of the project, and its impact on participants. “And then the advocacy, by creating a visual that people can respond to, can watch, can learn more about a topic. That has incredible power to it.”
“One of the steps of collaborative filmmaking is to do an intentional screening of the final film that you design, in collaboration with your participants, in this case with the families,” Burke added. “And I think we had one thing in mind, and as happened for this entire project, it turned into a much bigger, incredibly important piece.”
The Pediatric Palliative Care Coalition’s Firefly Chats, a series of interactive virtual discussions with parents and professionals that explore issues facing the pediatric palliative and hospice care community, incorporated “Visualizing Loss” into its ongoing programming.
“We decided to use that platform in order to present the film, and on top of the film, do an hour-long panel discussion with the five parent participants,” Hawley explained.
“We had over 500 people who registered for that program. Our general Firefly Chat is around 200, maybe. So there was a lot of interest in a really wide community,” she added. “And especially being able to have a participatory conversation with the parents following the film. That format worked well.
“And again, we were just kind of astounded at the interest in watching these very raw and very powerful films.”
Baumann said she felt the combination of the families, their stories, the films themselves and the follow-up discussion sessions packs a powerful punch.
“We were amazed that we had (so many) people attend our virtual screening and discussion, demonstrating the huge need to uncover the complexities of this topic,” she said, adding that creating a space for the participants work to be shared and celebrated is key to the process.
“We collected a lot of rich data about audience reactions, which we will be analyzing as a next step.”
Supportive creativity
Burke said she and her collaborators were sensitive to “not wanting to cause any additional harm or … concern among families.” They worked in close collaboration — “like hand in hand” — with the Pediatric Palliative Care Coalition to establish eligibility criteria, including “how would we find them, what do we need to have in place? So it was essentially sort of working through those networks.”
Other families were initially interested in taking part, but backed out for various reasons. “So we ended up with five, but those were selected based on a number of characteristics including that they were connected to care and support,” Burke said. “We didn’t want to ask them to relive these experiences without making sure that they were super supported.”
Emphasizing that the families were self-selected, Hawley noted some ultimately weren’t comfortable with the exposure the project invited.
“They had … cameras in their home, in their hands, and they found that they just couldn’t do it. And we were very supportive of them not doing it,” she added, “because again, we wanted to make sure that we weren’t causing harm.”
Burke said those who participated as first-time filmmakers shared feedback that was “incredibly powerful and supportive.
“I think the hardest thing for almost all of them was getting started, like ‘How do you do this, pick it up and create something?’ And that’s where we were available to talk through. They would do storyboarding and sort of decide what they want to create, and then they create it.”
Burke reiterated a point Hawley made that the participating families “talked about feeling heard and seen and valued in ways that they had not been previously,” she said. “Yeah, there were some technology challenges, but I think there was a packaging that goes around the whole process that allows us to be supportive if they ran into any of those challenges.”
For the soundtrack music, Burke and Baumann worked with Claire Gunsbury and Sean Andres of the Lullaby Project to create songs and soundscapes. The families partnered with musicians to incorporate instruments and elements that told their stories through what they called “powerful musical motifs.”
“The two musicians that work for the Lullaby Project worked with each family for the individual films,” Burke said, “and then they all get put together into one sort of documentary-length film where there’s a score at the beginning and the end.”
Meaningful integration
Sara Baumann said the “best part” of the project was getting to know the families. “We worked so closely with them for two years and had so many meaningful conversations and experiences together. Truly, I am blown away by their courage and by their commitment to this project.”
She called working with Hawley and the Pediatric Palliative Care Coalition a “truly beautiful partnership.”
“This project would have been impossible without not only her expertise in the topic of grief and navigating it with families, but her connections with the families of this project, the connections to the PPCC advisory board, who provided so much support along the way,” she said. “Her dedication to making sure the participants were meaningfully integrated was such a critical piece of this project.”
Ultimately, Bauman noted, the films are a testament to the children at their heart, and the love of their parents.
“These films are also a way to celebrate the legacy of the children who are at the center of the films,” she said. “And I hope that the families will continue to be proud of the incredible films that they created.
“I hope they will be a tool that can be used, even by the families, to share their experiences with their loved ones and communities.”
Shannon O. Wells is a writer for the University Times. Reach him at shannonw@pitt.edu.
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