Project Description
A Novel Photo-Narrative Communication Intervention Among Parents of Children with Severe Neurologic Impairment in the ICU
Children with severe neurological impairment
(SNI) account for 25% of pediatric admissions and approximately 50% of deaths
in the intensive care unit (ICU) in the United States. Parental stress is high
and exacerbated by inadequate opportunities to share information about their
child’s quality of life and family values that guide critical medical
decision-making with clinicians. The overall objective of this
application is to refine and pilot the novel “What Is Important to Us”
photo-narrative intervention that facilitates parent-centered communication
about the child’s health and the parent’s strengths. This application builds on
preliminary research and follows a stepwise approach for rigorous intervention
development. Aim 1 will
iteratively refine the intervention based on preliminary data and input from
parent-clinician dyads. Aim 2 will pilot the intervention among parents
of children with SNI and their clinicians in the ICU examining feasibility,
acceptability, and preliminary efficacy in improving perceptions of therapeutic alliance and decreasing
parent stress. This
application aligns with additional training essential to Dr. Bogetz’ successful
career development towards investigative independence including: 1) psychosocial intervention development; and 2) designing
and conducting clinical trials. During this award, Dr. Bogetz’ will be
supported by a highly successful mentorship team with expertise in studies
among children with SNI and their parents, photo-elicitation, intervention
development, and clinical trials. The environment in which Dr. Bogetz will complete this project is
unparalleled, with access to coursework, research participants, and a rich
integrative clinical research culture. This application is the first to
develop a novel photo-elicitation communication intervention tailored to the
unique needs of parents of children with SNI. At the conclusion of this award, Dr. Bogetz will have the
training, scalable intervention, pilot data, and publications to allow her to
successfully submit and undertake a K-level project testing the hypothesis that
the communication intervention will improve parent and child outcomes.
Bio
Jori
F. Bogetz, MD is an Assistant Professor of Pediatrics at the University of
Washington School of Medicine and an attending physician in pediatric
palliative care at Seattle Children’s Hospital. Dr. Bogetz received a BA degree
in philosophy from the University of California, San Diego, and a medical
degree from the University of California, Los Angeles David Geffen School of Medicine. Dr. Bogetz completed her
pediatric residency training and an Academic General Pediatrics Fellowship at
Stanford University. Following her pediatric training, she completed a
Pediatric Hospice and Palliative Medicine Fellowship at Harvard University and
Boston Children’s Hospital. Subsequently, Dr. Bogetz joined the faculty at the
University of California, San Francisco as the lead pediatric palliative care
physician. Dr. Bogetz then transitioned to the University of Washington as faculty
in 2018, where she conducts research within the Pediatric Palliative Care and
Resilience Lab and the Treuman Katz Center for Pediatric Bioethics. Dr. Bogetz
is an elected member of the Pediatric Task Force for the Palliative Care
Quality Collaborative (PCQC) through the National Coalition for Hospice and
Palliative Care. Her research focuses on improving care for children with severe
neurological impairment and their families through interventions that support
high quality communication, caregiver psychosocial well-being, and
family-centered care.
Email: Jori.Bogetz@seattlechildrens.org