The National Palliative Care Research Center

Curing suffering through palliative care research.


Renee Boss MD, MHS

Associate Professor

Johns Hopkins University

Grant Year
Grant Term
2 years
Grant Type
Pilot & Exploratory Project Support Grant

Project Description
“What it means for our family” – Video Decision Supports for Parents Considering Pediatric Home Mechanical Ventilation
Home caregiving demands for children with technology-dependence can pose substantial physical, emotional, and financial burdens to families, particularly those with underlying psychosocial stressors and vulnerabilities. In turn, excessive home care burdens precipitate recurrent pediatric hospitalizations and health expenditures. Existing data suggest that parents who face decisions about chronic technologies like mechanical ventilation rarely get to hear from other parents who have previously chosen for, or against, such technologies. This information about the lived experience of chronic medical technology should inform the risk-benefit calculus for an individual child and their family. The goal of this Pilot and Exploratory Grant is to develop a collection of videos portraying family experiences with decisions about home mechanical ventilation. The ‘What it Means for our Family” videos will incorporate the experiences of a diverse group of families (rural/ urban, younger/ older, varying socioeconomic status) across 3 states. The videos will serve as parent decision supports for families considering similar decisions. We hypothesize that the videos will result in more accurate family expectations of the home medical technology experience, less decisional conflict concerning goals of care, and improved patient- and family-centeredness of care decisions. 


Renee Boss, MD, MHS is an Associate Professor of Neonatology and Palliative Care at Johns Hopkins University School of Medicine and is core Faculty at the Johns Hopkins Berman Bioethics Institute.  She co-directs the Niarchos Fellowship in Pediatric Palliative Care and the Hecht Levi fellowship in Bioethics.  Dr. Boss’s research focus is at the intersection of palliative care, bioethics, and neonatology and targets parent-clinician communication and decision-making for the sickest infants and children in the intensive care unit. Her work has examined what parents want from these conversations, how clinician guide these discussions, and how trainees are prepared to lead these conversations.  She has been the PI for more than 15 research projects on the topic of communication and decision-making for critically ill infants, including a K12, a K23, and a Sojourns Scholar Award from the Cambia Foundation.  Dr. Boss received formal clinical research training in the form of a Masters in Health Science from the Johns Hopkins Bloomberg School of Public Health’s Graduate Training Program in Clinical Investigation. Her work has received honors from the American Academy of Pediatrics and the American Academy of Hospice and Palliative Medicine. Dr. Boss has authored numerous peer-reviewed research manuscripts, chapters and reviews related to decision-making for the sickest children.