Children with severe antecedent disabilities and their parents are inextricably linked with critical care services. Study results provide data that can be used to help clinicians better understand the perspectives of these parents and also help guide interventions to improve care and support. Although communication is essential, the structure and processes of critical care including rounding format, continuity in management, and mutual participation models should be tested and tailored to better meet parental needs and expectations.

Findings support the assumption that implementation of IFSPs for the cohort of children with chronic mechanical respiratory support needs in EIPs is challenging. Barriers reflect inconsistent care coordination and practical encumbrances, contributing to the physical and social isolation of these children and their families.