294 - Parents' Perceptions of Delays and Disabilities in their Children with Invasive Mechanical Ventilation

Poster Number: 294
Publication Number: 294.305

Background: Children who survive neonatal illness and require invasive mechanical ventilation (IMV) face developmental obstacles related to their neonatal course: prolonged critical illness, long hospitalizations, and ongoing medical fragility. Prior studies have shown high rates of developmental delays and evolving neurodevelopmental disabilities. Parents are critical educators and decision-makers for children with IMV, yet little is known about their perspectives on developmental delays.

Objective: To understand, through in-depth qualitative interviewing, the perspectives of parents of children with IMV regarding their child’s developmental trajectories and barriers and facilitators to maximize success.

Design/Methods: Parents of children under three years of age who required IMV with neonatal onset were recruited either from a state-wide agency (n=20) or an interdisciplinary ventilator clinic (n=10). Interviews were conducted in the family home, over video conferencing, or during a clinic visit. Families recruited through the state-wide agency were part of a longitudinal study and interviewed twice. Example interview topics included parents’: (1) assessment of their child’s current development, (2) future outlook, (3) access and barriers to developmental supports. Each semi-structured interview was coded independently and discussed to consensus by two coders. Study investigators came to consensus on main and sub-themes.

Results: Thirty parents of children with IMV were interviewed. Nineteen parents were interviewed twice over a 6-month period. At enrollment, the median(range) age of all children was 12(6-33) months and 73% of children were premature. Median(range) length of initial hospitalization was 10(4-26) months. Parents interviewed were 43% Non-Hispanic Black, 50% of families reported annual household income <$50,000 and 43% of families had private insurance. Four main themes were identified: (1) Parents identify developmental delays; (2) Parents remain hopeful about future developmental gains for their child; (3) Parents are passionate about influencing their child’s developmental trajectory; (4) Parents identify a variety of unmet therapy and disability-related needs.

Conclusion(s): Parents of infants with IMV can identify delays in their children, yet describe hope for developmental catch-up over time. Despite high risk of neurodevelopmental disability and intensive touch points with the healthcare system, parents often had a gap in knowledge about neurodevelopmental risk. Future studies ought to investigate communications about neurodevelopment in order to better support parents and children with IMV.