503 - Children with Invasive Mechanical Ventilation: Clinical Experts’ Perspectives on Neurodevelopmental Disabilities and Habilitative Needs

Publication Number: 1483.503

Julia Keith, Rush Medical College of Rush University Medical Center, CHICAGO, IL, United States; Emma Green, University of Chicago, Chicago, IL, United States; Sarah A. Sobotka, University of Chicago, Chicago, IL, United States

Background: Children who survive neonatal critical illnesses and continue to require invasive mechanical ventilation (IMV) after discharge have high rates of neurodevelopmental disabilities including cerebral palsy, intellectual disability, and autism spectrum disorder. During their initial hospitalization and afterward, parents intersect with various healthcare providers and receive critical and extensive education and training for the care of their child. It is not known to what extent this preparation focuses on habilitative needs or includes discussions about disability risks.

Objective: To explore expert providers’ perceptions of (1) specific habilitative needs and long-term disabilities of children with IMV and (2) their experiences with anticipatory guidance.

Design/Methods: Semi-structured interviews were conducted via video conference with 20 providers from diverse disciplines (primary and subspecialty physicians, inpatient and outpatient therapists) with experience caring for children with IMV. Participants were recruited through expert networks and snowball sampling. Interviews were coded independently by two reviewers using a modified template approach; the interview guides served as initial codebooks and were iteratively modified. Themes and sub-themes were discussed to consensus and exemplary quotes selected.

Results: 20 interviews of an average of 57 minutes were analyzed. Participants were 40% Physicians, 40% Speech-Language Pathologists, 20% Occupational, 20% Physical, 20% Respiratory Therapists, primarily female (85%) with 18.1(2-45) years in practice. Themes were sorted into two topics: (1) Unmet Habilitative Needs for Children with IMV; (2) Perceptions of disability risks and approach to conversations about disability. Ubiquitous shortfalls in therapies were described despite common recognition that developmental delays across domains universally exist. Providers described gaps in community-based services due to therapist-level (e.g. comfort and expertise with IMV) and family-level factors (e.g. bandwidth for travel and coordination of services). When guiding families, providers often focused on developmental progress and acknowledged uncertainty. Few described intentional discussions about long-term disability risk.

Conclusion(s): A cohort of experienced healthcare professionals described therapy gaps and infrequent neurodevelopmental prognostication for vulnerable children with IMV. Future research, with critical family input, should explore if more direct and structured communication about disability risk could better prepare families to support their children and optimize developmental outcomes.