PCORI Awards $6 Million to Study Strategies to Support Parents After a Child’s Unexpected or Traumatic Death
A research team led by Kelly Michelson, MD, MPH, FCCM, FAAP, HEC-C, and Stacy Tessler Lindau, MD, MA, has been approved for a $6,155,096 million research funding award by the Patient-Centered Outcomes Research Institute (PCORI) to 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.” Michelson, a Critical Care physician at Ann & Robert H. Lurie Children’s Hospital of Chicago; Professor of Pediatrics and Julia and David Uihlein Professor of Bioethics and Medical Humanities, Northwestern University Feinberg School of Medicine; and Director, Center for Bioethics and Medical Humanities, Northwestern University Feinberg School of Medicine; and Lindau, the Catherine Lindsay Dobson Professor of Obstetrics and Gynecology and Professor of Medicine at the University of Chicago, 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.
"The death of a child is a family's worst nightmare. When a child dies unexpectedly or traumatically parents rarely have help finding support for themselves or the rest of their family. 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,” said Dr. Michelson. “This is a collaborative effort involving Lurie Children's, Missing Pieces (a program of The HAP Foundation) co-founded with Kristin James, Dr. Stacy Lindau's team of researchers at the University of Chicago, 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."
“This project was selected for PCORI funding not only for its scientific merit and commitment to engaging patients and other healthcare stakeholders, but also for its conduct in real-world settings. 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,” said PCORI Executive Director Nakela L. Cook, MD, MPH.
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 Lurie Children’s, 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.
“For nearly more than 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 Stacy Tessler Lindau, MD, MA, Catherine Lindsay Dobson Professor of Obstetrics and Gynecology and Professor of Medicine at the University of Chicago who is also 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 comparative trial, in partnership with families, coroners, medical examiners and grief experts, we aim to identify evidence-based strategies to ensure families with sudden and traumatic loss of a child can find the community support they need.”
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.
About Missing Pieces, a program of The HAP Foundation
Missing Pieces, a program of The HAP Foundation, provides a centralized hub for grief support, education, and resource navigation for children, families, and communities impacted by a pediatric death. We partner with a network of organizations that bring expertise in child loss by illness, trauma, homicide, overdose and suicide, serving families and children grieving prenatal through young adult deaths. The HAP Foundation is an independent nonprofit that provides education, advocacy, workforce development, and research around hospice, palliative care, serious illness, and grief. With four decades rooted in direct patient care, it currently focuses on educating communities and professionals; engaging in community-based research to better understand and impact disparities in hospice, palliative care, and grief support; and advancing policies that assist individuals and families during end of life.