A research team led by medical ethicists and physician-researchers at the University of Chicago Medicine and Ann & Robert H. Lurie Children’s Hospital of Chicago has been approved for a $6.2 million award to study strategies to bridge gaps in the healthcare system and help bereaved parents connect with existing community resources after the unexpected or traumatic death of their child.
UChicago Medicine’s Stacy Tessler Lindau, MD, MA, and Lurie Children’s Kelly Michelson, MD, MPH, will work in collaboration with Kristin James, co-founder of Missing Pieces, a program of The HAP Foundation that partners with Chicagoland organizations to support people after a child dies.
“In partnership with families, coroners, medical examiners and grief experts, we aim to identify evidence-based strategies to ensure families with a sudden and traumatic loss of a child can find the community support they need,” said Lindau, the Catherine Lindsay Dobson Professor of Obstetrics and Gynecology and Professor of Medicine at UChicago.
One strategy will establish two-way, personalized communication between parents and a Missing Pieces Grief Navigator, while the other approach will rely on text messages that provide more general lists of grief and bereavement resources over time. Surveys and one-on-one interviews will give the researchers insight into each strategy’s effect on parents’ well-being and confidence in accessing resources.
“The death of a child is a family’s worst nightmare,” said Michelson, a critical care physician at Lurie Children’s who is also a Professor of Pediatrics and the Julia and David Uihlein Professor of Bioethics and Medical Humanities at Northwestern University Feinberg School of Medicine. Parents often struggle to find resources that might help them cope with the mental, physical and familial impact of their child dying before the age of 25.
The research funding is awarded by the Patient-Centered Outcomes Research Institute (PCORI), a leading funder of patient-centered comparative clinical effectiveness research in the U.S. Patients, caregivers and other stakeholders joined scientists to evaluate the proposals.
“This project was selected for PCORI funding not only for its scientific merit and commitment to engaging patients and other health care stakeholders, but also for its conduct in real-world settings,” said PCORI executive director Nakela L. Cook, MD, MPH. “It has the potential to answer an important question about how to support parents after the unexpected or traumatic death of their child and fill a crucial evidence gap.”
While helping grieving families is the study’s primary purpose, the researchers also intend to analyze the impact of their strategies on local medical examiners, coroners and community organizations. Rather than limiting their study to a rigidly optimized clinical setting, the researchers will work with five Chicago-area medical examiners’ and coroners’ offices dealing with a wide range of families of children under 25 who die unexpectedly or in a traumatic manner.
This pragmatic clinical study approach will allow them to observe how the strategies play out in “real-world” situations, making conclusions more generalizable in the long term.
“For a decade, we have been working in primary care, emergency care and hospital settings to connect families to local resources that help everyone stay well, manage illnesses and care for others,” said Lindau. “This study builds on everything we know about how to overcome health and human services system gaps.”
“This is an exciting opportunity to collaborate with Ann & Robert H. Lurie Children’s Hospital of Chicago, University of Chicago and PCORI to advance necessary research around grief after child loss,” said Joseph P. Matty, president of The HAP Foundation, which operates the Missing Pieces program. “In our commitment to improve care and support grieving families through Missing Pieces, we look forward to the results of this study to gain a better understanding of best practices for serving parents and siblings.”
PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions.
