“What it means for our family” – Video Decision Supports for Parents Considering Pediatric Home Mechanical Ventilation
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.
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.