How to support families after a child’s unexpected or traumatic death

• Link to: Northwestern Now Story

• ‘The death of a child is a family’s worst nightmare’

• Study will explore how to help families find community resources after the sudden, traumatic or unexpected death of their child

CHICAGO --- When a child dies unexpectedly or traumatically, parents rarely have help finding support for themselves or the rest of their family. A new $6,155,096 million research grant, recently awarded to Dr. Kelly Michelson of Northwestern University and the Ann & Robert H. Lurie Children's Hospital of Chicago, Dr. Stacy Tessler Lindau of the University of Chicago and Ms. Kristin James of Missing Pieces will fund a study that will examine strategies to help parents find community resources to cope and grieve during this fragile time.  

“The death of a child is a family’s worst nightmare,” said Michelson, professor of bioethics and medical humanities and pediatric critical care at Northwestern University Feinberg School of Medicine and a critical care physician at Lurie Children’s. “This work will help these families by studying two different strategies for getting parents whose child has died traumatically or unexpectedly to the community resources they so desperately need.”

The study, “The Missing Pieces Trial: A Multi-Site Pragmatic Comparative Effectiveness Trial of Interventions to Support Parents After Their Child’s Unexpected or Traumatic Death,” is a collaborative effort involving Northwestern, Lurie Children’s; the University of Chicago; Missing Pieces, a program of The HAP Foundation, which partners with Chicagoland organizations to support people after a child dies; and numerous stakeholders, including bereaved parents, coroners, medical examiners and community organizations across the Chicagoland area.

“While our main goal is to help families, we will also study the impact of our work on medical examiners and coroners and on community organizations that provide crucially needed support for families during these tragic situations,” said Michelson, who directs the Institute for Public Health and Medicine’s Center for Bioethics and Medical Humanities at Feinberg.

Michelson received the award from the Patient-Centered Outcomes Research Institute (PCORI), the leading funder of patient-centered comparative clinical effectiveness research in the U.S. 

“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 Dr. Nakela L. Cook. “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.”

“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 Dr. Stacy Tessler Lindau, the Catherine Lindsay Dobson Professor of Obstetrics and Gynecology and professor of medicine at the University of Chicago who also is a principal investigator for the project. “This study builds on everything we know about how to overcome health and human services system gaps. Through a randomized controlled trial, 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.”

The study was selected through a highly competitive review process in which patients, caregivers and other stakeholders joined scientists to evaluate the proposals. It was selected for funding through a PCORI program designed to support research that produces results that are broadly applicable to a diverse range of patients and care situations and can be more quickly taken up in routine clinical practice.  

“This is an exciting opportunity to collaborate with the 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." 

Many clinical studies test whether an approach to care works under carefully controlled conditions in specialized research centers, but health care is rarely delivered in such optimized situations and settings. Pragmatic clinical studies test a treatment’s effectiveness in “real-world” practice situations, such as typical hospitals and outpatient clinics, and also can include a wider range of study participants, making their findings more generally applicable.