“Stuck in the ICU”: Caring for Children with Chronic Critical Illness (S749)

Abstract

•Describe family factors which contribute to recurrent and prolonged ICU hospitalizations for children with chronic critical illnesses.•Describe clinician factors which contribute to recurrent and prolonged ICU hospitalizations for children with chronic critical illness. Neonatal and pediatric intensive care units (ICU’s) increasingly admit patients with chronic critical illness (CCI)-children whose medical complexity leads to recurrent and prolonged ICU hospitalizations. Describe clinician and family experiences with ICU care for pediatric CCI. Semi-structured interviews with: 1) interdisciplinary providers (inpatient; outpatient; home care; foster care) with extensive CCI experience, or 2) parents of children with CCI. Stakeholders came from 5 regions (Seattle, WA, Houston, TX, Jackson, MS, Baltimore, MD, and Philadelphia, PA). 51 stakeholders identified these ICU challenges for pediatric CCI:•Patient factors Children with CCI are often “stuck” in the ICU because they need therapies (e.g., ventilators) that hospitals centralize to one unit. During extended ICU stays, these children require longitudinal relationships and developmental stimulation that often outstrip ICU staff capabilities. Daily management for pediatric CCI is often dictated by ICU routines; lack of individualized approaches can undermine well-being.•Family factors These families are perceived as particularly vulnerable due to chronic social, emotional, logistical and financial strains. The prolonged ICU experience leads some to disengage from their child and from decision-making.•Clinician factors Clinicians note that parents of children with CCI are often experts about their child’s disease, shifting the typical ICU clinician-parent relationship. Clinicians admit that comprehensive care for children with CCI can become secondary to needs of acutely ill patients. For clinicians, pediatric CCI care is professionally and personally taxing and stretches typical “ICU mentality.”•System factors Stakeholders agree that achieving consistent ICU care goals is difficult for CCI patients. Challenges include rotating ICU staff, an ICU bias toward more interventions, and variability within values-based decision-making. ICU care is poorly adapted to pediatric CCI. Patient, family, clinician, and system factors highlight opportunities for targeted interventions.