Introduction

An infant’s hospitalization in the neonatal intensive care unit (NICU) is a potentially traumatic event (PTE), marked by fragmentation of the family unit [1]. Up to 50% of parents report emotional distress such as depression, anxiety, and acute stress or post-traumatic stress when their infants are hospitalized in the NICU [2]. Evidence suggests that these symptoms can persist for years after a NICU stay [3,4,5,6,7]. Yet, some parents may not recognize their evolving mental health needs nor be aware of available treatments unless this aspect is assessed during follow up care for their infant. In fact, post-traumatic stress disorder (PTSD), which is highly prevalent in NICU parents, must be present for at least a month and takes time to diagnose, thereby increasing the importance of continued mental health screening and support after a NICU admission.

Family-infant separation was exacerbated in recent years in the context of the COVID-19 pandemic and resulting temporary restrictions on family presence in the NICU [8, 9]. Although these restrictions brought greater attention to the compounded trauma of family separation, a NICU hospitalization in and of itself had long been recognized to interrupt parent-infant bonding, create uncertainty regarding short- and long-term outcomes for the child, and alter parental roles [1]. The resulting stress contributes to negative downstream effects on both parents and infants [10], which may be reflected in lower cognitive performance in childhood, missed well-child visits and immunizations, and increased emergency department visits [11].

Family-centered developmental care (FCDC) programs within NICUs mitigate parental distress by improving parent-infant bonding. [12, 13] Examples of pertinent FCDC practices include shared decision-making with parents, incorporating parents into daily rounding, motivational interviewing, and encouraging parent ownership of responsibilities like skin-to-skin, human milk feeding, or daily infant care. When FCDC is not an integral, seamless component of NICU care, it can make the transition home from the NICU more stressful. Limited guidance is available regarding extending FCDC approaches beyond NICU discharge, whether to home or to another hospital unit, which has created a critical gap in provision of sustained support for the mental well-being of families impacted by a NICU hospitalization [7].

This gap is important to address because an infant’s transition from NICU to home is a highly stressful period for parents. While it brings family reunification, it is also marked by changes in relationships with members of the interdisciplinary care team, loss of interprofessional support, and social isolation, all while balancing other family and work responsibilities [14, 15]. In fact, NICU parents have described the transition home as a period of “pervasive uncertainty”, with worries surrounding their child, doubts about their parenting abilities, and relationship adjustments with partners and outpatient care teams [16]. Implementing strategies for comprehensive family support during and after care transitions, incorporating anticipatory guidance, follow-up appointments, and referrals to community resources, inclusive of appropriate family psychosocial support, is essential to effectively address these challenges [17].

In this paper, we outline factors that influence parental mental health outcomes during transition from NICU to home. We describe the current state of family psychosocial support after a NICU hospitalization and the challenges of optimizing well-being during transitions from the NICU. Finally, we provide recommendations to support family well-being during transitions from NICU based on current evidence, published expert opinions, and the expertise of parents and interdisciplinary NICU providers who developed the American Academy of Pediatrics (AAP) Trainees and Early Career Neonatologists (TECaN) Carousel Care national advocacy campaign.

Factors influencing parental mental health outcomes during and after transitions

Awareness of perinatal mental health diagnoses and available treatments vary for parents impacted by the NICU. Some parents have received mental health diagnoses before a NICU admission and have existing treatment plans, but the majority of parents who are identified as experiencing mental health concerns during or after NICU admission have no prior history of mental health diagnoses [18]. This presents problems in access to mental healthcare during and after a NICU admission.

As a PTE, a child’s need for NICU care may naturally impact parent perceptions of their child’s future health and vulnerability [19]. Parents of children who have been hospitalized in the NICU rate their perceptions of child vulnerability (parental perception of child vulnerability, PPCV) much higher than parents of healthy term infants who do not require NICU admission. These perceptions can persist regardless of the illness severity of the child or the fact that the child might have stabilized enough to go home [20]. Altered parent perceptions of their child’s vulnerability and maladaptive parenting practices developed in response to trauma can result in the phenomenon of Vulnerable Child Syndrome (VCS) [21, 22]. VCS contributes to poor NICU graduate long-term health and developmental outcomes [21, 22]. A risk factor for VCS is having less family or social support [19].

Beyond VCS, health inequities have a detrimental effect on the mental health outcomes of families affected by the NICU. Disadvantaged families face additional stress during NICU admission and after transition to home, including barriers to parental involvement, which contribute to disparities in NICU graduate outcomes [23, 24]. Disparities in perinatal mental health outcomes are driven by four major themes: interpersonal, environmental or community, healthcare clinician, and institutional factors. Close consideration of the interplay of these factors and a deeper understanding of strategies to overcome these barriers are critical and deserve further investigation [23, 24].

Current state and challenges

The implementation of FCDC frameworks, including essential, evidence-based practices, such as skin-to-skin care and human milk feeding, has improved integration of families in their infant’s care during hospitalization with positive impacts for infants as well as parental well-being [13, 25,26,27,28]. Continuing FCDC after NICU discharge is especially challenging because our current healthcare system is fragmented rather than family-centered. The focus in pediatric settings generally shifts to the child [12, 29], while care for parents is largely siloed within adult settings. Thus, while the National Perinatal Association (NPA) recently called for NICU families to be “empowered and prepared” for homegoing [14] a minority of families feel their needs are met. A recent study found that 56% of NICU families needed information, support, and/or close follow-up in the days following discharge. Among these families, 21% of families had mental health concerns after discharge [30]. Further, even families who may have been well-adjusted during the NICU hospitalization are at risk for experiencing acute psychosocial distress during or after their transition home. Effective transitions of supportive interventions from inpatient to outpatient settings for NICU families should evolve to support the well-being of the entire family unit [14, 30].

Prior to discharge, recommended best practices include assessment by an interdisciplinary care team, in collaboration with families, to determine their medical and psychosocial readiness for the transition [27]. Strategies such as a checklist or a survey can be used to increase parental confidence [31, 32]. As parents are assessed for mental health symptoms in the NICU using validated screening tools, these results and follow-up recommendations should be incorporated into discharge planning [17, 32]. Team members who are assessing psychosocial readiness can communicate plans with parent permission through the provider who will be signing out to the child’s primary care provider or, where feasible, via warm hand offs to social workers or other similar psychosocial support providers within the child’s primary care clinic. As an alternative, communication could occur directly through a hospital’s electronic medical record system to ensure that both the primary care and specialized NICU follow-up providers are aware of a family’s psychosocial support planning, while protecting family privacy. Documentation practices will need to be adapted based upon hospital practices and state law in addition to the Health Insurance Portability and Accountability Act (HIPAA).

Many NICUs have systems in place for referrals to NICU graduate, or NICU follow-up, programs. These programs offer an opportunity for continuity of psychosocial care, yet there are barriers to realizing this potential. Currently, the primary focus of NICU follow-up clinics is often identification of infant neurodevelopmental impairment and facilitation of early intervention. While some follow-up programs incorporate specialized services to provide continuity of parent psychosocial support in the outpatient setting, this is not yet a universal, established standard of care [33]. In addition, many such clinics and medical homes that provide comprehensive care may have difficulty finding funding to continue their programs [34]. Presently, no guidelines exist to inform a standardized process for referrals of eligible parents to mental health services during follow-up visits after NICU discharge.

Universal mental health screening is a key component of ensuring parent well-being through the transition home. The role of primary care pediatricians in facilitating screening for maternal postpartum depression through infancy is well established. To promote both optimal infant outcomes and family well-being, the AAP recommends that pediatricians screen for maternal postpartum depression during 1-, 2-, 4-, and 6-month well-child visits and consider screening partners at 6 months [35, 36]. However, the current AAP guidelines are largely limited to depression screening for mothers. They do not address the emerging evidence that all parents who are impacted by the NICU, regardless of gender, gestational status, or severity of their infant’s illness, are at risk for heightened psychosocial distress that includes symptoms beyond depression, such as anxiety and trauma symptoms, and may persist beyond these recommended screening intervals. Inclusive, longitudinal perinatal mental health screening is therefore essential for families of infants discharged from the NICU [2, 15, 19, 37,38,39,40].

Practice recommendations

In line with the principles of FCDC, psychosocial and mental health support are recommended for all parents during their NICU hospitalization [1]. Given the downstream effects of stress related to a NICU hospitalization, we argue that structured family mental health support should continue after transition to home, a time of potentially increased stress and vulnerability of the family unit [17, 41, 42]. In this section, we discuss guiding principles in keeping with NPA recommendations for psychosocial program standards surrounding NICU discharge. We utilize these principles as the basis for our practice recommendations for follow-up care, which we suggest as follows [1, 17, 32]:

  1. 1.

    Ensure individualized, family-centered, and culturally competent continuity of psychosocial support for families through effective transitions of care to outpatient medical teams and community resources.

  2. 2.

    Offer comprehensive psychosocial support informed by universal mental health screening, with input from an interdisciplinary team and ongoing monitoring using validated tools after discharge.

  3. 3.

    Prioritize effective communication, education, and trust-building by embedding the family within the interdisciplinary team during hospitalization and after discharge.

We support and reinforce calls for inclusion of family psychosocial assessments during NICU follow-up visits as an integral application of FCDC in the longitudinal care of families impacted by the NICU [38]. Parent mental health screening in follow-up clinics will augment the multilayered screening process already performed through the parents’ primary care providers and the infant’s primary pediatrician. Further, it is important to note that many parents do not have primary care providers [43], making it even more important that parent mental health screening occurs during pediatric visits.

Since parent mental health screening is not routinely a part of NICU follow-up care, it deserves further standardization. The process of mental health screening for parents of infants affected by the NICU ideally begins during pregnancy and continues in the NICU. It was established as an AAP neonatal standard of care in 2023 [44]. Mental health professionals have recommended that screening is performed using standardized, validated instruments [38]. Screening studies have found that factors such as parents’ subjective experience in the NICU, or perceived threat, is a more reliable predictor of mental health difficulties than the infant’s objective clinical status [15, 39]. Thus, it is critical that screening is implemented equitably and universally, and that all families can access individualized support that is tailored to their goals, values, and experiences.

In addition, longitudinal screening is essential. Families may fall into different risk categories during the NICU stay and after transitions because individual responses to the NICU stressors emerge along varying trajectories [1, 45]. Subsequently, repeating parent mental health screening before anticipated NICU discharge can inform a discharge assessment as well as FCDC post-discharge [38, 39, 46]. Anne Kazak’s Pediatric Psychosocial Preventative Health Model (PPPHM) categorizes families as (1) distressed but resilient, requiring universal screening and general support and resources, (2) in acute distress or with risk factors, requiring interventions and services specific to symptoms as well as monitoring, or (3) with persistent and/or escalating distress or high-risk factors, requiring consultation with a mental health specialist [47]. These categories can be determined through mental health screening in addition to clinical assessments by the psychosocial team in the NICU and used to identify the appropriate level of support for each family impacted by the NICU [47, 48].

Per AAP recommendations, high-risk hospitalized infants should have neurodevelopmental follow-up identified and all indicated subspecialty follow-up referrals made prior to discharge [49, 50]. In addition to infant medical risk, mental health screening at discharge can be used in combination with a psychosocial team’s clinical assessments to identify families that may benefit from NICU follow-up clinic. However, it is important that follow-up clinics are adequately equipped to meet the psychosocial needs of families [33, 35, 36]. To achieve this, we propose that NICU graduate programs include specialized staff and are structured as the standard of care to optimally support families’ psychosocial needs.

Similar to the billing strategies that have been recommended by AAP for perinatal mental health screening that occurs at pediatric well-child visits [35], appropriate billing codes can be incorporated when screening is performed at NICU follow up visits. Reimbursement, where applicable, may assist with financial sustainability of such efforts. Billing codes may vary by payor and state, thus billing guidelines will likely need to be created at an institutional or state level. Care is needed to ensure that the cost of psychosocial services is not translated to families, as this may add additional burden and create barriers to follow-up visits.

Potential strategies to improve long-term mental health outcomes

Several comprehensive program models and individual components of FCDC have shown success; however, evidence evaluating implementation of FCDC in intensive care units has been categorized as weak per GRADE methodology due to a paucity of rigorous supporting research [29]. Evidence for inpatient interventions incorporating developmentally supportive care initiatives like kangaroo care and randomized controlled trials evaluating programs such as Creating Opportunities for Parent Empowerment (COPE) and Family Nurture Intervention (FNI) demonstrate benefits that persist after discharge from the NICU [13, 51, 52]. Moreover, interpersonal psychotherapy (IPT), cognitive behavioral therapy (CBT), and counseling are evidence-based interventions for perinatal depression, anxiety, and PTSD [53], and manualized CBT in the NICU has demonstrated improvement in depression, anxiety, and trauma symptoms that persist through 6 months [54]. However, there is little evidence examining outpatient care models after NICU discharge, highlighting an ongoing need for further research. Where evidence is lacking, recommendations have been made based on published expert opinions.

We propose a conceptual framework that highlights how family factors and structural inequities impact NICU family mental health outcomes (Fig. 1). We suggest incorporating targeted strategies to address modifiable risk factors based on a family’s identified level of psychosocial needs at discharge (Table 1).

Fig. 1: Conceptual framework of longitudinal mental health support.
figure 1

Demonstrates factors that may influence long-term mental health outcomes of families impacted by neonatal intensive care unit (NICU). Factors are categorized by level of support, including the family, NICU, outpatient healthcare system, and community. FCDC family-centered developmental care, PCP primary care provider, WIC Special Supplemental Nutrition Program for Women, Infants, and Children.

Full size image
Table 1 Key interventions based on psychosocial symptom level to improve mental health support for NICU families.
Full size table

Considerations for the future

There are opportunities at the local, state, and national levels to advocate for improved support for families impacted by the NICU in their long-term psychosocial needs [48] (Table 2). At a policy level, prime considerations include mandating paid family leave at a federal level and extending Medicaid programs at the state level to ensure coverage for parent health for a minimum of one year postpartum [55,56,57]. Additionally, increasing research funding for NICU family mental health is crucial for developing interventions that better address the unique challenges faced by these families and improve long-term neurodevelopmental outcomes for NICU graduates.

Table 2 Individual, institutional, and national recommendations for addressing the mental health needs of families impacted by the NICU during discharge and transition to home.
Full size table

As the care of high-risk neonates continues to advance, it is imperative that we prioritize effective transitions of these infants and their families out of the NICU environment. To achieve this goal, we strongly reinforce calls to accept responsibility for the ongoing environmental factors and social determinants of health that impact the trajectories of the infants and families for whom we care [58]. We propose broadening the scope of NICU post-discharge follow-up care to systematically incorporate strategies to support the well-being of the entire family unit, including hiring staff with training and expertise in adult mental health. Further, integration of medical-legal partnerships in these interdisciplinary programs will be key to addressing issues of safe and secure housing as well as access to public programs, as lower levels of social support correlate with mental health symptoms [59]. By committing to these initiatives, we can ensure that families impacted by a NICU hospitalization receive the comprehensive, holistic care they deserve, and that their transition home is one of support, empowerment, and success long-term.