The financial burden experienced by families during NICU hospitalization and after discharge: A single center, survey-based study.

To investigate a broad array of costs and perceived financial burden (FB) faced by families of NICU graduates both during hospitalization and after discharge. Cross-sectional survey-based study design. A survey measuring socio-demographics, direct non-medical costs, indirect costs, social support and perceived FB was developed. One-hundred-twenty-two pairs of parents of NICU graduates participated in the study. Most of the families (87.7%) experienced FB due to NICU hospitalization. The median cost of visiting infant during NICU admission was 615 euros (range: 42,7320). FB correlated with cost for drugs (ρ = .271, p < .05, 95%CI:[.020, .490]), dietary supplement (ρ = .385, p < .05, CI:[.010, .665]), behavioral disorders (ρ =  -.186, p < .05, 95%CI:[-.356, -.003]), language delay (ρ = .243, p < .01, CI:[-.408, -.063]) and comorbidities (ρ =  -.206, p < .05, 95% CI:[-.374, -.024]). Transportation costs due to medical visits (ρ = .415, p < .01, 95% CI:[.239, .564]) and therapy sessions (ρ = .517, p < .05, CI:[.121, .771]) correlated with higher FB. Grandparents of the infant were the most frequent source of help (86.1%). Families having infants with adverse outcome experienced more hospitalizations after NICU discharge (p < .05) and higher FB (p < .01) than families with typically developing infant. Lack of government financial help was associated with higher perceived FB (CI:[1.117,29.127], p < .05).    Conclusions: Our findings demonstrated that parents of NICU graduates experience high rates of FB, highlighting their sources (e.g., grandparents support) and difficulties (e.g., private therapy costs) through the lens of patient perspective. Our study promotes reflection on policies which should be adopted from the European health services that are similar to the Italian one to support NICU graduate families and reduce inequalities. What is Known: • Families of NICU graduates face several kinds of costs during hospitalization and after discharge. What is New: • NICU hospitalization is a multifaceted event that impact financial burden experienced by families. • NICU graduate families whose infant had adverse outcome and felt lack of financial help from local policy makers experience higher rates of financial burden.