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

We developed an ad hoc survey to investigate the FB experienced by families during NICU hospitalization and after discharge. Items were derived within a patient perspective framework and considering studies on financial burden in NICU parents [2, 3]. Both objective (i.e., effective costs) and subjective (i.e., individual perception) aspects of financial burden were considered [8]. Inputs from neonatologists (n = 2), NICU psychologists (n = 2) and one health care management professor were collected to adapt the content of the survey to the Italian NICU context and healthcare system (see Fig. 1 for a summary of the theoretical framework). The survey was preliminary reviewed and piloted for content and clarity by parents of NICU graduates referring to the Perinatal Infections center of our University Hospital. Items were dichotomous (presence vs. absence), on a 4-level Likert scale (ranging from “none” to “high”) or open questions in which parents could write down the amount of expenses faced (e.g., monthly outgoings for vitamins). The survey was divided as follows:

The questionnaire is provided as Supplementary information.

Data analysis was performed using SPSS v.28 software (IBM). Quantitative variables were expressed as mean ± standard deviation (sd) and categorical variables as frequency and percentages. Chi-square test was used to examine associations among nominal variables. Wilcoxon test was run to examine perceived FB among families who had an infant with normal vs. adverse outcome and families who experienced financial help from the government vs. those who did not perceive it. Kruskal-Wallis test with Bonferroni correction for multiple comparisons was run to test differences among multiple groups stratified by gestational age, birthweight and COVID-19 pandemic periods. Spearman rho correlation was run to detect variables correlated with the FB experienced by families. Multivariable binary logistic regression to determine factors associated with the perception of family FB was run.

A total of 125 pairs of parents were approached during the routinely developmental follow-up visit. Two couples (1.6%) refused to participate due to lack of time and one couple (0.8%) did not fully complete the survey due to lack of fluency in Italian written form. The final sample included 122 pairs of parents (97.6%). Socio-demographic information of mothers and fathers are shown in Table 1. Half of both mothers and fathers graduated high-school. A large number of mothers were classified within the category “Unskilled professions” while most part of fathers belonged to the “Artisans, specialized workers and farmers” category.

A large amount of families had their own house as compared to families who lived in a house for rent or at parent house. Detailed family characteristics can be found in Table 2.

During NICU hospitalization, 36.1% of mothers had to leave their job as compared to 20.5% of fathers. In total, 9.8% of parents were fired during NICU hospitalization (mothers = 4.9%; fathers = 4.9%).

Characteristics of the infants involved in the study are reported in Table 3. Median (range) length of stay in NICU was 50 days (5, 365). Median family daily expenses during NICU hospitalization were 15 euros (1.40, 60) encompassing travel expenses to NICU and personal expenses when needed (i.e., meals). The overall median cost of visiting infant during NICU hospitalization was 615 euros (42, 7320). A decreasing trend (p = 0.051) during COVID-19 pandemic (median = 495, range = 42, 3000) as compared to the pre-pandemic period (median = 825 euros, range = 90, 7320) was observed. Median costs after COVID-19 period raised to 600 euros (95, 4080). Mean costs of NICU hospitalization according to prematurity rate and birthweight category are shown in Table 4.

Differences in total expenses among groups stratified by gestational age were found (H(4) = 24.174, η² = 0.218, p < 0.001). In particular, parents of very preterm (mean rank = 65.83, p < 0.001) and extremely preterm infants (mean rank = 71.73, p < 0.001) had higher expenses as compared to full term infants (mean rank = 22.50). Those differences were kept after Bonferroni correction. Statistically significant differences were found according to birthweight category (H(3) = 33.081, η² = 0.298, p < 0.001). Parents of ELBW infants (mean rank = 78.48) faced higher costs due to NICU hospitalization as compared to the other birthweight categories. Parents of LBW (mean rank = 49.55, p = 0.007) and VLBW (mean rank = 55.52, p < 0.001) infants experienced higher costs as compared to parents of > 2500 g infants (mean rank = 18.38). No differences were found among LBW and VLBW infants (p = 0.490). Those differences survived after Bonferroni correction.

Forty-five percent of infants had health or development related issue and 21.3% of them had at least one comorbidity at the time of participation. Detailed infant developmental outcomes can be found in Table 5. Twenty-seven percent went for at least one new hospitalization after NICU discharge and 46.7% went for medical day hospital (18% within our hospital). Almost all the infants (94.2%) had outpatient checkups (35.2% of them within our hospital) other than developmental follow-up visits. Number of medical checkups per year were assessed according to infant age at the time of administration of the survey (0–12 months = 35.24%; 13–24 months = 16.39%; ≥ 25 months = 48.36%). Almost the whole sample (97.67%) went for at least one medical visit within the first year after discharge. During the same period, most part of families (69.76%) went for more than 3 medical checkups per year, frequency rate decreased to 60% within the second year of life. At 25 months of age, 69.48% of families went for more than one medical checkup per year and 49.15% for more than 3 medical checkups. Twenty-one percent of families had exemptions due to low income while 14.8% of them received financial support for the pathology of the infant.

Most parents indicated that they needed less than 1 month (45%) of out-of-work days due to their own infant health-related issues while 18.5% of parents did not need out-of-work days as at least one parent did not work. A number of families needed 1 month (10.7%) free from work to take care of their infant or more than 1 month (29.5%) per year. Out-of-work days were not paid as were superior to the contract rules for 28% of families.

Special aids were used by 14.8% of families. Among them, 63.63% paid for special aids with expenses ranging from 20 to 40 euros (median = 27.50). Infants who needed physiotherapy (18.9%) started the treatment at median age (range) = 7 (3, 48) months. Families who paid for physiotherapy (52.17%) faced a cost of median (range) = 160 (120, 400) euros per month. Infants who needed habilitation therapy were 19.7%. Among them, 73.91% needed three therapies simultaneously and 17.39% needed two therapies. The most practiced therapies were speech (91.3%) and psychomotor therapy (86.95%). Habilitation therapy was started at median (range) = 24 (6, 84) months. Seventy-one percent of families paid for habilitation therapies. Costs for therapy sessions was median (range) = 300 (160, 600) per month while transportation at therapies reached median = 100 (2.40, 400) euros. Overall, 8.19% of infants started physiotherapy within the first year of life and at least one habilitation therapy within the following 2 years. Further expenses faced by families after discharge can be found in Table 6.

Parents felt supported by their own family (90.2%). Grandparents of the infant were the most frequent source of support (86.1%). Other helps found by families were nursery school (13.9%), babysitters (11.5%) and domestic workers (4.1%). Twenty-three percent of families needed more than one of the above-mentioned sources of help. Transportations (43.4%) and house handling (40.2%) were the most frequent helps received. Other children management was given to 29.5% of families. Twenty-nine percent of families received economic helps and 12.3% of parents received emotional support. Nine percent of families did not receive any kind of help and stated that their own partner was their only source of help. Nineteen percent of families indicated being supported by the government. Governmental economic helps frequently received were child support check (40.2%) and baby bonus (35.2%). Those checks were not helpful (50.8%) or only partially helpful (43.4%) for facing outgoings.

Overall, 87.7% of families experienced FB after NICU experience as impacting the whole family system. Sixty percent of families experienced moderate (50%) or high (10.7%) rate of FB due to NICU experience.

Families having infants with adverse outcome experienced more hospitalization after NICU discharge (Cramer’s V = 0.264, χ² = 8.853, p = 0.004) and higher rates of FB (Z =  −2.756, p = 0.006; Fig. 2). Significant high rates of perceived FB in family perceiving lack of support from the government were detected (Z =  − 3.419, p = 0.001; Fig. 3). We did not find any statistical difference comparing before and during COVID-19 and during and after COVID-19 pandemics with regard to private versus family pediatrician, costs of transportation at hospital and medical visits (p > 0.05),

Perceived FB correlated with costs of drugs (ρ = 0.271, p < 0.05), baby formula and dietary supplement (ρ = 0.385, p < 0.05). Infant adverse outcome (ρ = 0.251, p < 0.01) and comorbidities (ρ = 0.206, p < 0.05) were correlated with high rates of perceived FB. Among the infant developmental issues, presence of behavioral disorders (ρ = 0.186, p < 0.05) and language delay (ρ = 0.243, p < 0.01) were correlated with high rates of FB. Expenses linked to accompaniments at medical visits (ρ = 0.329, p < 0.01) and therapy sessions (ρ = 0.271, p < 0.05) correlated with higher FB rates. Lack of government support correlated with high FB perceived (ρ = 0.320, p < 0.01). Lack of government financial help was associated with the FB experienced by families (Exp(B) = 5.705, CI:[1.117,29.127], p < 0.05).

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 [29‐31].

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).