A Novel Photo-Narrative Communication Intervention Among Parents of Children with Severe Neurological Impairment in the ICU

PROJECT SUMMARY
Children with severe neurological impairment (SNI) account for over 50% of deaths in the pediatric intensive
care unit (ICU). Despite making up <1% of the pediatric population, children with SNI make up 25% of ICU
admissions where they experience twice the frequency of mechanical ventilation. During critical illness,
parental stress is high and exacerbated when parents experience stigma related to their child’s neurologic
illness and are unable to share information about their child’s health and family values that guide medical
decision-making with clinicians who have limited time to develop relationships and rotate frequently. The
overall objective of this application is to develop a communication intervention that bolsters parents’ ability to
share their perspectives, needs, and values with clinicians in the ICU. Development of this intervention is
critical to improve clinical care in the ICU for patients with SNI and their families. Following a stepwise
approach for rigorous intervention development, Aim 1 will prospectively examine the longitudinal relationships
between parent perceptions of therapeutic alliance and psychosocial outcomes, including parental stress,
during their child’s ICU admission. Aim 2 will iteratively refine a novel photo-elicitation communication
intervention based on preliminary studies and input from parent-clinician dyads. Aim 3 will pilot test the
intervention among parents of children with SNI and their clinicians in the ICU examining feasibility,
acceptability, and preliminary efficacy. This application will support Dr. Bogetz’ career development as it aligns
closely with additional expertise essential to her success as an independent clinical investigator including
training in: 1) longitudinal cohort studies; 2) psychosocial intervention development; and 3) conducting
randomized controlled trials (RCTs). Dr. Bogetz’ career development will be supported by a highly skilled and
successful mentorship and advisory team with expertise in longitudinal cohort studies among seriously ill
children and their parents, photo-elicitation, psychosocial intervention development, and clinical trials. The
environment in which Dr. Bogetz will complete this project is unparalleled, with access to mentoring,
coursework, clinical and office space, research and grants management, and administrative support. This
application is the first to characterize therapeutic alliance and other variables important to the wellbeing of
parents of children with SNI in the ICU and to develop a novel communication intervention tailored to the
unique needs of this population. This application is significant because it aims to relieve stress among a
vulnerable and understudied group of parents whose children disproportionally receive care in the ICU due to
serious illness. At the conclusion of this career development award, Dr. Bogetz will have the training, scalable
intervention, pilot data, and publications to allow her to successfully submit and undertake an R01-level project
testing the hypothesis that the communication intervention will improve psychosocial outcomes among parents
of children with SNI during their child’s critical illness.

Grant Number: 5K23HD107232-04
NIH Institute/Center: NIH
Principal Investigator: Jori Bogetz