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Objectives : To describe caregiver perspectives regarding connecting to Early Intervention (EI) services after NICU discharge in a Medicaid sample. Methods : Open-ended semi-structured 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 (IQR) birth weight was 1365 (969, 2800) grams; 50% were Hispanic; 31% reported living in a neighborhood with 4th 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 sub-themes related to the person in environment: healthcare 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 healthcare 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 early intervention services. |
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