When services start: A pilot study of parent perspectives on early intervention timing for very preterm infants

Background: Early Intervention (EI) programs aim to support neurodevelopment in high-risk infants. However, infants with greater social disadvantage and medical complexity may face delays in receiving timely services after neonatal intensive care unit (NICU) discharge. Objective: To examine associations between social disadvantage and EI contact among NICU graduates, and to explore early trends in access by medical risk. Methods: In this prospective pilot study, 40 families of NICU graduates completed a survey assessing awareness of, and contact by, state-funded EI programs. Timing of EI contact was examined both overall and stratified by Area Deprivation Index (ADI) and severity of intraventricular hemorrhage (IVH). Results: While 95% of families were aware of EI, only 70% had been contacted at a median of 63 days post-discharge. National ADI was broken into quartiles with quartile 1 representing the lowest disadvantage and quartile 4 representing the highest disadvantage. A total of 37.5% of families in quartile 4 were not contacted by their local EI program within a median of 94 days of discharge. Infants with high-grade IVH had the longest delays to contact (median = 83 days) and greatest social disadvantage with median ADI of 85. Conclusion: Delays in EI contact were most pronounced among infants facing the greatest social and medical risk. These findings from this pilot study highlight the need for multiple mechanisms for outreach and suggest potential benefits of a structured home rehabilitation program to support families during the critical post-discharge transition period.