When Cassie and Jim Grassmyer brought their terminally ill son home for hospice care, a friend offered to take photographs. She captured every beautiful detail of 8-year-old Jack—hair, nose, fingers, toes. After he died, those photographs were a source of solace for Jack’s parents. Cassie Grassmyer says she appreciated the gesture of photography because she wouldn’t have thought to do it herself in those final days when she was preparing her son, her spouse, her parents and—finally, herself—to say goodbye.
It’s not easy to provide meaningful support for families grieving the loss of a child, says Leslie Scheunemann, University of Pittsburgh assistant professor of medicine. “There’s so little research into parental bereavement” to provide guidance, she says. Partly, it’s out of sensitivity. Yet the lack of knowledge may contribute to parents feeling isolated and misunderstood in their grief, she adds.
Scheunemann is part of a first-of-its-kind project at Pitt combining filmmaking, art therapy and health research to better understand pediatric end-of-life care and family bereavement. Using a method invented by researchers in Pitt Public Health called “collaborative filmmaking,” study participants will be trained in videography and invited to create short films to tell their stories. Then the researchers and filmmakers will analyze the films together to identify common themes and important findings among the grief and coping experiences.
By reviewing films created by the participants, researchers hope to capture nuances and emotional context beyond your average survey or qualitative interview.
“There are arts-based approaches to health research, but the number that use film is relatively limited,” says principal investigator Jessica Burke, interim vice dean for Public Health and professor of behavioral and community health sciences.
Burke codeveloped the concept of collaborative filmmaking (now registered as an invention with Pitt’s innovation office) along with Sara Baumann, Pitt assistant professor in the school of public health. Burke and Baumann have used the method to partner with young women in Nepal to study menstrual practices. They’ve also partnered with adolescents in Pittsburgh to study mental health.
Their projects include public screenings of participant films to raise awareness and start discussions on public health interventions.
Last year, Scheunemann read a Pittwire article about collaborative filmmaking. She immediately thought it could apply to her research on clinician-family communication in the ICU and her experiences with end-of-life care. (See her May 2019 report in JAMA Internal Medicine.) Meanwhile, Burke and Baumann were talking about their new research method with colleagues who suggested filmmaking could bring end-of-life care and bereavement issues to light.
The researchers connected, and, in July, the team received a grant from the McElhattan Foundation for the project. They are partnering with the Pediatric Palliative Care Coalition to work with parents who are at least 6 months to a year beyond the death of a child.
“There’s no pill for grief,” says Scheunemann.