Our data show that the vast majority of the survey participants reported a significant impact of the birth of a premature child on the family finances.

Our results provide a clearer scenario of sources that can influence costs related to NICU hospitalization leading to better identify specific profiles of families at risk to experience large amount of expenses during this period. In particular, families with extremely and very preterm infants have to face higher costs than parents of full-term babies. Considering birthweight, parents of babies with ELBW and VLBW face higher costs than parents of babies with adequate birthweight. This could be due to the severity and comorbidities associated with low gestational age and birthweight [12, 13] which can increase NICU length of stay. Our findings add knowledge to the financial costs related to infant clinical severity within a patient perspective framework. We recommend to screen all the families with preterm and low birthweight infants as increasing in infant length of stay could overwhelm parents’ capacity to face costs during NICU hospitalization. Detection and implementation of policies for families with overwhelming costs is important in order to reduce inequalities.

COVID-19 pandemic restrictions did not influence expenses faced by families during NICU hospitalization. This could be due to the fact that parents continued to visit NICU and asked for in person daily medical updates. Our sample also included families who were out of region during the preterm labor. They had dramatically high non-medical costs as they stayed in a hotel along the whole hospitalization. Preterm birth is frequently an unexpected event [14] that leads to drastic changes of family lives [15, 16]. NICU accommodations for parents could avoid cost transportations and improve their participation to the developmental care of their infant [17, 18].

Importantly, rate of NICU graduate mothers who quitted their job after childbirth was double as compared to mothers of healthy newborns in our country (18%) [19]. Our findings highlighted that mothers frequently left their job to take care of their infant in NICU while most fathers continued to work. During the hospitalization, 5% of mothers and 5% of fathers were also fired. Adverse childbirth and NICU hospitalization may be specific risk factors affecting the possibility for mothers to work. Those findings are particularly important as Italian mother unemployment rate is already one of the highest in Europe [20]. Policies need to take care of the multifaceted consequences of having a baby hospitalized in NICU as this stressful event may exacerbate parent unemployment especially of mothers.

Our study fills the gap regarding non-medical costs related to NICU hospitalization [3] and provide evidence of important side effects of the indirect costs (i.e., job loss) that influence family financial issues and disparities of parental experience during NICU hospitalization. In addition, our results provide a new perspective to further study factors influencing parental well-being, attachment to the baby and family experience during hospitalization [15, 21, 22]. Although all the families received at least one financial help from the government because of having a child, our findings prove that those helps are not sufficient to buffer the costs during NICU hospitalization and after discharge. Nowadays, policies do not consider neither NICU hospitalization nor its length of stay variability and their consequences on family income. Financial policies need to address direct non-medical and indirect costs faced by families and support them through the implementation of NICU accommodation services, ad hoc financial helps according to infant clinical condition and protect parents’ job.

We argue that baby hospitalization within NICU needs to be considered as stressful multifaceted event impacting parents both psychologically and financially. Those two aspects may affect each other. All the consequences due to NICU hospitalization deserve to be accounted in order to implement a Family-Centered Care that takes into account specific sources and needs of families.

Almost all the families of NICU graduates experienced financial burden (FB) during the first years after NICU discharge. Among them, 60% experienced from moderate to high rates of FB. We highlighted that families of infants with adverse outcome experienced higher rates of FB as compared to families with typically developing infants. This could be due to the fact that parents of infants with developmental issues experience more frequent medical visits and hospitalizations as compared to parents with typically developing infants [23]. Those medical procedures include additional non-medical costs (i.e., transportations) and indirect costs (i.e., free-days from work that are superior to the ones established from the contract). Behavioral disorders and language delay were linked to high FB. As a result of the fact that psychomotor and speech therapy are not timely provided from the Italian National Health Service. Indeed, waiting lists for therapies can range from 2 to 48 months as confirmed from some families of our sample and websites of regional rehabilitation centers. The surveyed parents declared to spend median 300 euros for habilitation therapies per month when not provided from the National Health Service while transportation costs for therapies reached median 100 euros per month. Early intervention is essential to improve developmental trajectories of infants at risk for neurodevelopmental disorders [24]. Thus, National Health Service should timely match the needs for habilitation therapies of families in order to both foster infant neurodevelopmental trajectories and reduce the FB experienced by parents.

Parental perception of lack of economic helps from the government was the only factor affecting their FB. Importantly, feelings of being neglected from the National Health Service may furtherly exacerbate parental stress [25] leading them to be strictly focused on the disorder of their child [26] and impact the whole family unit [27]. Pathology exemption was one of the few sources of help for families. It is provided from the National Health System to all those patients that require specific services for the purpose of monitoring the evolution of the disease and its complications [28]. Pathology exemption buffers direct medical costs (e.g., developmental follow-up visits and clinical screening) for < 32 week preterm and/or with birthweight < 1500 g infants. Nevertheless, pathology exemption is valid up to the first 3 years of life of NICU graduates. This could influence FB of families as NICU graduates are at high-risk to develop neurocognitive issues across childhood [29,30,31].

Italian policies do not include any financial aid specific for family of NICU graduates infants and also maternity period do not match with the additional time that mothers and fathers need to stay close to the infant during hospitalization. On the contrary, other European countries approach to maternal and neonatal health differently. Some countries (e.g., Belgium, Austria, Germany) provide parents with additional free-from-work period starting since NICU discharge [32]. Financial aids are accorded to families whose NICU graduate infant develops neuro-motor abnormalities (e.g., cerebral palsy) homogenously across European countries [32]. However, prematurity itself as a risk condition, without any developmental issue, do not receive specific financial aids yet. Moreover, within countries differences emerge with regard to both family facilities and services (e.g., developmental follow-up).

Most parents indicated they needed help to manage family. Grandparents of NICU graduates were the most important source to both alleviate financial expenses and emotional support. Dependency from grandparents ranged from handling other children to having the family of NICU graduate infant living with them. Those findings underline the important supporting role of grandparents as well as the limited financial resources of a number of families after NICU discharge. Indeed, families could experience difficulties to achieve their own economic autonomy. Those findings reflect important difficulties related to achieve economic independence due to additional costs along with the ones usually needed for infants [33]. Policy makers should provide economic helps across the first years after discharge, in order to foster financial autonomy of families. With regards to other sources of help, surveyed families asked more frequently for nursery schools as compared to families of both Southern Italy (2%) and the whole Italian country (11%) [34]. Public nursery schools are not widely spread in Italy, especially in the Southern part of the country (ratio of public nursery schools and infants between 0 and 2 years is 15.2%) [34]. Thus, a large part of those families have to face financial costs such as private nursery schools with a cost that can reach 850 euros per month. In addition, families who needed nursery schools could be underestimated due to scarce presence of services and poor family income. This could lead parents to ask for baby sitters with costs ranging from 883.09 to 918.82 euros [35, 36].

The strong points of our study include the investigation of a broad array of costs and the relative FB both during NICU hospitalization and after discharge within the Italian context towards the lens of the patient perspective.

Among the limits, our survey included only infants who satisfied the Italian National Guidelines [37, 38] to be enrolled to the developmental follow-up of the preterm or at-risk of disability infants (i.e., preterm newborns with gestational age < 32 weeks and/or birthweight <1500 g and infants who suffered for hypoxic-ischemic encephalopathy). Thus, our study did not clarify the FB experienced by families of late preterm infants and > 1500 g at birth. Parents who were not fluent in Italian written form were also excluded leading to a lack in understanding financial burden of families coming from different countries.

The adoption of a societal perspective and the comparison of parents from different sociocultural backgrounds could enlarge the framework of financial costs of all the subjects involved within the NICU setting (i.e., the National Health Service, parents) and the type of costs faced (i.e., direct, non-direct medical costs and indirect costs).