Connecting to Early Intervention Services After Neonatal Intensive Care Unit Discharge in a Medicaid Sample

OBJECTIVE: To describe caregiver perspectives regarding connecting to early intervention (EI) services after neonatal intensive care unit discharge in a Medicaid sample. METHODS: Open-ended semistructured interviews and focus groups were conducted with English- or Spanish-speaking families enrolled in Medicaid in an urban high-risk infant follow-up clinic at a safety-net center, which serves preterm and high-risk term infants. We generated salient themes using inductive-deductive thematic analysis. RESULTS: Thirty-two participants completed the study. The infant's median (interquartile range) birth weight was 1365 (969, 2800) grams; 50% were Hispanic; 31% reported living in a neighborhood with fourth quartile economic hardship. Eighty-one percent were classified as having chronic complex disease per the Pediatric Medical Complexity Algorithm and 63% had a diagnosis of developmental delay. A conceptual model was constructed and the analysis revealed major themes describing families' challenges and ideas to facilitate connection to EI. We identified subthemes related to the person in environment: health care environment/support and socio-economic resources, parent perspectives and built environment; provider level factors such as appointment scheduling, staff limitations, and parent suggestions to improve health care and service navigation, which included improved information sharing, the importance of patient advocates, video resources, early referrals to EI facilitated by the discharging hospital and system workarounds. CONCLUSIONS: The results from this study may provide a granular roadmap for providers to help facilitate referrals to EI services. We identified several ideas such as using advocates and providing transitional resources, including online media, that might improve the connection to EI services.