The Pediatric End-of-Life (PedEOL) Care Group is centered at the College of Nursing, University of Tennessee, Knoxville. A team science approach guides the scholarship with several interdisciplinary teams operating at a distance from multiple institutions with research focused on understanding the end-of-life care needs of children and adolescents with serious, advanced illness.
The team (PI: Lisa C. Lindley) continues to be funded by the National Institutes of Health National Institute of Nursing Research (NINR). NIH funding has allowed the group to expand its inquiry of pediatric concurrent hospice care using a comprehensive national Medicaid database.
Given the critical lack of knowledge about pediatric hospice and concurrent care, this research group significantly increases the overall evidence about caring for at end of life. Our research provides the first-ever scientific investigation of these needs using sophisticated Big Data analytics.
This line of investigation is expected to ultimately improve the care and outcomes for children, adolescents, and their families at end of life.
Our mission and goals reflect the importance of quality care at end of life for children and adolescents:
WE WILL
- Conduct research related to pediatric end-of-life care.
- The PedEOL Care group research will provide evidence about child and family outcomes including quality of care by using sophisticated Big Data analytics.
WE SEE
- Federal regulations in the Affordable Care Act (ACA) section 2302 require States to provide Medicaid coverage for eligible children to receive Concurrent Care for Children.
- Since the ACA enactment in 2010, states varied in their implementation of Concurrent Care for Children with some implementing as recently as 2017.
- Little or no evidence has been provided to support the effectiveness of this federally-mandated program.
WE KNOW
- As health services researchers that pediatric patients are underserved.
- Health disparities may arise in access to care, quality of care, and care coordination as well as in healthcare coverage.
- Data analytics are critical to building evidence to support these vulnerable populations.
- Policymakers will benefit from the availability of the evidence from this research.
WE BELIEVE
- Children are not the same as adults but may benefit from pediatric end-of-life care.
- Children receiving end-of-life care may represent a smaller population than in adults, but pediatric end-of-life care is important.
- Hospice care, concurrent care with hospice care, and palliative care are all important end-of-life services for children.
IN THE FUTURE
- Children and their families suffering through unimaginable diagnoses may be served through improved access and quality of specialized pediatric end-of-life care.
- More research is necessary to evaluate models of care for children.
Lisa C. Lindley, Ph.D., RN, FPCN, FAAN, Principal Investigator, Professor, and Nightingale Endowed Faculty Fellow, University of Tennessee, Knoxville
Pamela S. Hinds, Ph.D., RN, FAAN, Interim Director, Center for Translational Research; The William and Joanne Conway Chair in Nursing Research; Executive Director, Nursing Science, Professional Practice and Quality Outcomes, Children’s National and Pediatrics Professor, George Washington University
Jennifer W. Mack, MD, MPH, Associate Chief, Population Sciences for Pediatric Hematology/Oncology and Senior Physician, Dana-Farber Cancer Institute and Professor of Pediatrics, Harvard Medical School
Jessica Keim-Malpass, Ph.D., RN, CPNP-AC, FAAN, Deputy Director of the Center for Advanced Medical Analysis (CAMA), Associate Professor of Nursing, and Associate Professor of Pediatrics, School of Medicine, University of Virginia
Melanie Cozad, Ph.D., Assistant Professor, Health Services Research Administration, College of Public Health, University of Nebraska Medical Center
Kim Mooney-Doyle Ph.D., RN, CPNP-AC, FAAN, Associate Professor, Family and Community Health, School of Nursing, University of Maryland
Radion Svynarenko, Ph.D., Assistant Research Professor, College of Nursing, University of Tennessee, Knoxville
Annette M. Mendola, Ph.D., Associate Professor and Chief, Division of Clinical Ethics, The Department of Medicine, University of Tennessee Graduate School of Medicine
Wendy C. Naumann, Ph.D., Consultant
Deb A. Kirkland, Dr.PH, RN Postdoctoral Health Policy Research Fellow, College of Nursing, University of Tennessee, Knoxville
Heather A. Davis, Ph.D., Postdoctoral Health Policy Research Fellow, College of Nursing, University of Tennessee, Knoxville