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. Author manuscript; available in PMC: 2026 Jun 18.
Published in final edited form as: Neoreviews. 2025 Jun 1;26(6):e435–e445. doi: 10.1542/neo.26-6-030

Lack of Parental Visitation as a Symptom, Not a Diagnosis: The Impact of Social Drivers of Health in the NICU

Shenell Reynolds 1, Erika G Cordova-Ramos 2, Mattie F Wolf 1, Salathiel R Kendrick-Allwood 1, Sonya Nicole McLaughlin 1, Amy RL Rule 1, Michelle-Marie Peña 1
PMCID: PMC13271998  NIHMSID: NIHMS2184393  PMID: 40449915

INTRODUCTION

Social drivers of health (SDOHs) are “conditions in the environments where people are born, live, learn, work, play, worship, and age that impact a wide range of health, functioning, and quality-of-life outcomes and risks.”1 They are major determinants of health disparities, with the World Health Organization estimating that SDOHs account for approximately 30% to 55% of all health outcomes.2 Health-related social need (HRSN) screening and referral to resources in health settings have been proposed as a potentially better practice to address health disparities.3 This practice does not aim to address SDOHs—the broader social and economic conditions of a community—but rather to identify and alleviate the current social needs of individuals. However, this process is fraught with challenges, such as concerns of stigma, resource limitations, and operational difficulties. This article reviews how individuals and organizations can overcome these challenges through intentional and thoughtful implementation of HRSN screening in neonatal intensive care units (NICUs).

MEET THE EXPERT

Erika Gabriela Cordova-Ramos, MD, is a clinical neonatologist and Assistant Professor of Pediatrics at Boston University School of Medicine. She uses implementation science methods to design and test the impact of social care interventions on caregiving practices such as breastfeeding, skin-to-skin contact, and family engagement to improve the health and well-being of low-income families with high-risk infants in the NICU. Currently, she co-leads multisite quality improvement (QI) initiatives targeting HRSN in the NICU.

CASE PRESENTATION

Thirty-five-week-old preterm twin infants born via cesarean section because of fetal growth restriction in twin B were admitted to the NICU for respiratory failure requiring continuous positive airway pressure. Both infants showed symptoms consistent with transient tachypnea of the newborn and quickly transitioned to room air. Most of their hospitalization was spent working on oral skills, monitoring for apneic events, and supporting growth and thermoregulation.

NICU staff observed that the family was rarely able to visit. The birthing parent was known to prefer a language other than English (Swahili) and was updated daily by our medical team over the phone using a phone interpreter. During a routine daily update over the phone with the resident physician, almost a week into the hospitalization, the parent shared concerns that her electricity was going to be shut off, including her heater, in the middle of a frigid winter because they could not pay their electricity bill. She also shared concern for food insecurity, noting that she has had days wherein she, her husband, and her toddler consumed only water in a 24-hour period.

When the birthing parent met with the NICU social worker, our NICU team learned that the parents were refugees from Tanzania but were no longer actively connected with an agency because they had been in the US for over 1.5 years. The NICU social work team worked closely with the parents, connecting them with a community organization that helped families with resources and support. The infants were later safely discharged home with their family.

PERSPECTIVE TAKING AND REFLECTION

Imagine Being in the Birthing Parent’s Shoes; How Would You Feel?

Author perspective (Dr Shenell Reynolds [SR], who identifies as a non-Hispanic Black cis woman): Knowing that this family is living in an unfamiliar place without loved ones nearby to help, I could imagine feeling extremely confused and scared. In addition, not having enough food or water to stay nourished while recovering from a major surgery and caring for a busy toddler at home would add feelings of extreme exhaustion. To make matters worse, the thought of my family suffering because I was unable to provide for them would likely add feelings of helplessness and guilt.

Expert perspective (Dr Erika Cordova-Ramos [EC], who identifies as a Hispanic, cis woman): I’d feel anxious, over-whelmed, and fearful for the future, thinking about how I would care for my twins after discharge when I am already in a dire need situation at home. I might also feel deeply sad for not being able to be with my babies as much as I want, powerless for not being able to provide my children with basic needs such as nutrition and warmth, and isolated for having to navigate an unfamiliar health care system, not speaking the dominant language, and lacking community ties and support networks.

It Seemed Like Trust and Needs Prompted the Parent to Bring Up Her Concerns. What are Ways to Build Trust and Screen for SDOHs in a Respectful and Dignified Way?

[SR]: I found it interesting that this parent’s needs were revealed during a routine phone update by the medical team and not during the formal screening process. I believe this speaks to the level of trust that the parent developed with the medical team, which made them comfortable with being so open and vulnerable. Typically, screening for HRSNs involves asking sensitive questions that can be triggering for families. Discussing these circumstances requires knowledge, sensitivity, empathy, and intentionality. Families must know that the conversation is happening in a “safe space” and should be reassured that the screening is not targeted but designed to support families.

[EC]: This requires an intentional, culturally sensitive, and family-centered approach. Strategies to build trust and minimize stigma include the use of standardized screening tools with disclosure statements that normalize screening. Empathic, nonjudgmental communication, active listening, and validating families’ experiences can create safe environments for families to disclose needs and accept assistance. It is essential to use language free of bias to assure families their disclosures will not lead to negative consequences because this can be particularly important for undocumented immigrant families. More research is needed to understand the impact of screening modalities and types of screening providers. It is likely that the background (eg, racial and language concordance, peer status), training, relatability, and empathy skills of screening providers play a key role. It is equally important that the support that stems from screening must be timely and effective. Trust-building is an ongoing process that depends on consistent, compassionate, and responsive care, which the team clearly demonstrated.

CASE OBJECTIVES

  • Reflect on the role of SDOHs in providing equitable care in the NICU and its effects on the parental experience.

  • Review the current state of screening and addressing SDOHs and HRSN in the NICU.

  • Identify options for screening for HRSN and some of the available resources designed to help support NICU families.

KEY TERMS

  • SDOHs: the nonmedical, community-level “factors that influence health outcomes. They are the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life.”2 SDOHs affect everyone; they are not something a person can possess or lack, and they are neither inherently positive nor negative.4 Recently, there has been a shift away from using the term “social determinants of health” because it is believed that the word “drivers” more accurately describes the direct influence of these factors on health while highlighting the potential for change.5

  • Social risks: “individual-level adverse [social conditions] such as food insecurity, housing instability, transportation difficulties.”6

  • Social needs: social risks “that affect [one’s] ability to maintain their health and well-being” while also putting “individuals at risk for worse health outcomes and increased health care use.”5 It is a self-reported need “shaped by an individual’s priorities and perception of need.”6 An individual might have many social risks but only a few immediate social needs. Differentiating between social risks and social needs underscores an individual’s role in prioritizing social interventions. Related terms in the literature include HRSNs, unmet social needs, unmet basic needs, and material hardships.4 Specific examples of SDOHs vs HRSN include:
    • Neighborhood and built environment (SDOH) vs individual experiencing lack of stable or affordable housing (HRSN)1,5
    • Economic stability (SDOH) vs individual experiencing financial strain (eg, poverty, unemployment; HRSN)1,5
    • Access to nutritious foods (SDOH) vs individual experiencing food insecurity (HRSN)1,5
  • Social prescription: “a systematic approach to addressing patients’ social needs by referring them to or implementing community-based interventions and facilitating social connection based on individual need.”7 Additionally, “Social prescribing can be initiated by any member of the patient’s care team and need not be done exclusively by physicians. Ultimately, social prescribing is most successful when clinicians consider a patient’s individual needs and incorporate them in shared decision-making with that patient about a prescription’s costs and benefits. For example, an individualized approach to a social prescription for a new immigrant might incorporate interventions that account for language barriers and cultural needs specific to forging social connection within their particular community.”7

  • Health equity: “the attainment of the highest level of health achievable for all people, where everyone has a fair and just opportunity to attain their optimal health regardless of race, ethnicity, disability, sexual orientation, gender identity, socioeconomic status, geography, preferred language, or other factors that affect access to care and health outcomes.”5

  • Poverty: per the United Nations, worldwide, “poverty is defined in either relative or absolute terms. Absolute poverty measures poverty in relation to the amount of money necessary to meet basic needs such as food, clothing, and shelter. Relative poverty defines poverty in relation to the economic status of other members of the society: people are poor if they fall below-prevailing standards of living in each societal context.”8

  • Refugee: “a person who has been forced to leave their country in order to escape war, persecution, or natural disaster and cannot return for fear of persecution.”9

  • Resettlement: “involves the selection and transfer of refugees from a nation where they have sought protection to a third nation which has agreed to admit them – as refugees – with permanent residence status and a pathway to naturalized citizenship.”10

  • Marginalization: “a social process by which individuals or groups are (intentionally or unintentionally) distanced from access to power and resources and constructed as insignificant, peripheral, or less valuable/privileged to a community or ’mainstream’ society.”10

  • Intersectionality: “the interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group, regarded as creating overlapping and interdependent systems of discrimination or disadvantage; a theoretical approach based on such a premise.”11

DISCUSSION

Overview of SDOHs

SDOHs include complex individual, community, and contextual factors, all of which interact to influence health outcomes.12 Adverse SDOHs, including economic instability, lack of insurance, and racial discrimination, can have detrimental effects not only on one’s health but also overall well-being.13 Additionally, there is an association between adverse SDOHs, length of hospital stay, hospital readmission, and health care use, all of which impact society at large.14 Despite being a highly resourced country, the US lives with structural flaws in the health care system, deep inequities in the distribution of SDOHs, and an ongoing struggle with poverty. The US Census Bureau reported a more than 2-fold increase in the child poverty rate following the COVID-19 pandemic, resulting in almost half of US children living at or near the poverty level.15 Families living in poverty are more likely to experience multiple HRSNs that compound and affect health and well-being across the life course.16,17 As a result, the Centers for Medicare & Medicaid Services—the single largest payer for health care in the US—has implemented changes that support initiatives designed to address HRSNs.17 These changes include mandatory social needs screening for all admitted patients aged 18 years and older, merit-based incentives, and coverage flexibility to cover specific nonmedical interventions. This approach provides a critical first step to address the impact of unmet social needs with the understanding that a new approach to health care is necessary to decrease “healthcare costs and utilization, increase the quality of care, and improve health outcomes” in this country.18

Health-Related Social Needs Screening in the NICU

The American Academy of Pediatrics (AAP) recognizes the negative impact of poverty on children’s overall health and well-being. In 2016, and again in 2021, the AAP issued a policy statement directed toward all pediatric care providers, recommending universal screening for HRSN at all routine health supervision visits from birth to 21 years of age. In addition, this policy statement encourages the use of referrals for community resources for identified unmet needs.19 Despite growing evidence of its importance, HRSN screening has yet to be routinely integrated into all medical settings, especially inpatient settings.14 This delay leaves a large void for families of patients who face prolonged hospitalizations, as is seen in the NICU. In a national cohort, up to one-third of NICU families experienced 1 or more unmet social need(s).20–22 Infants whose families have 1 or more unmet social needs were more likely to have longer lengths of stay in the NICU, experience neurodevelopmental impairment or death, and be readmitted to the hospital than those without.20,23 Additionally, the influence of HRSN on outcomes for NICU patients and families is intensified by the emotional, physical, and financial stress that parents experience, which persists beyond the time of discharge.24,25 The NICU hospitalization itself can exacerbate preexisting needs or contribute to the emergence of new needs given the tremendous cost and time burdens imposed on NICU families (eg, frequent meals and transportation, forgone income from lost time at work, etc). Thus, systematic HRSN screening in the NICU setting is critical to identify and address the needs of our most vulnerable infants and their families at the earliest stages of life.26

While most neonatal clinicians feel that HRSN screening is important and feasible and would improve family experience and engagement,27 only some NICUs have integrated social needs screening into their practice.28,29 In fact, one study of a nationally representative sample of US NICUs found that only 1 in 4 NICUs have implemented HRSN screening.29 Barriers to screening include time constraints and competing demands in acute care settings, inadequate staff knowledge of available resources, and insufficient capacity to support families with referrals to resources as well as resource constraints within and outside health systems.28–30 There is also a lack of validated screening tools, particularly adapted to the NICU setting.28–31 Even when a tool is selected, NICU staff often have limited capacity to perform the screening and support families in connecting with resources. Many NICUs may have a single social worker to not only screen but also figure out how to address identified needs, which significantly impacts the feasibility and quality of the process.28,29

Meanwhile, caregivers in the NICU are often over-whelmed with the stress of caring for their sick newborn and other stressors such as language barriers, experiences of discrimination, or immigration or asylum status. In this context, caregivers may have difficulty disclosing unmet social needs to their clinical teams because of perceived stigma, fear that this information may be used against them, and frustration at the prospect of disclosing needs without receiving assistance.29,32–36 Family-centered approaches that protect privacy and promote trust may alleviate families’ concerns, facilitate disclosure of unmet social needs, and promote engagement and follow-through with referrals. Technological implementations (eg, using tablets or mobile phones, electronic medical record customization, resource directories, and social prescriptions) hold the potential to streamline screening and referral processes.13 Yet, in all this work, there is also a real risk of perpetuating disparities with any approach, so data tracking of screening and referral outcomes stratified by social factors is critical.13,35,36

Addressing identified unmet social needs has additional logistical considerations and challenges. Once needs are identified, hospitals typically then provide referrals to community-based organizations, social services agencies, mental health services, and outpatient and/or subspecialty care.28,31 The quality and availability of community resources and social safety nets vary widely across the US.28–30 Neonatal clinicians have an opportunity to advocate for better and more equitable access to social services and resources at the community and policy levels.28,29 When resources are limited, it can take more time and effort to successfully make and complete referrals.13,28,29,37 Even within pediatric health systems, coordination between inpatient/NICU settings and outpatient follow-up can be challenging. While an initial referral may be completed by the time of discharge from the NICU, ensuring a successful referral and sustained connection with services requires ongoing follow-up and coordination.13,28,31,37 Developing community partnerships and communication and care coordination processes is key to advancing neonatal equity and may be a strategy to help overcome some of the challenges reviewed.13,28,29,37

It is essential to point out additional barriers faced by immigrant and refugee families (IRFs), as described in the case, because immigration status is also an SDOH.38–40 IRFs experience cultural and linguistic barriers within the unfamiliar US health system at baseline, and this can be magnified in the NICU.39–41 Multiple studies describe that many IRFs place a high priority on employment, which may interfere with being physically present in the NICU, especially over the course of an extended hospitalization.39–41 Even when linguistic and cultural barriers are addressed, some IRFs may feel uncomfortable disclosing social needs because of concerns that social agencies may interface with immigration enforcement agencies and/or jeopardize their relationship with their employers. Other IRFs may feel safe but might not be aware of the resources available to them even if they disclose their needs.39–41 Resettled refugees, for example, are permanent residents on the pathway to citizenship and eligible for safety net services but may not know what is available to them.10,41–43 Holistic models of implementing HRSN screening for IRFs and other vulnerable communities are needed across pediatrics, including in the NICU.41

Lastly, the same health care disparities and SDOHs impacting infants and families during the NICU hospitalization also influence postdischarge needs and care.42,43 A retrospective cohort study by Fraiman et al found that out of 477 infants from a large urban academic level III NICU in Massachusetts, only about 42% of eligible patients participated in infant follow-up programs, which are designed to closely monitor and support the neurodevelopment of high-risk NICU graduates.43 Follow-up was significantly lower among patients whose mothers self-identified as Black, whose mothers’ preferred language was not English, and who lived in an area with an extremely low child opportunity index.43,44 Similar results were demonstrated in a secondary analysis by Uwemedimo et al of data from an urban hospital-based ambulatory pediatric practice.44 Uwemedimo et al showed that caregivers with limited English proficiency and non-US citizens were more likely to be lost to follow-up in pediatric clinics, but if they remained engaged, were more likely to use the resources provided than those with English proficiency and/or US citizenship.44 Moreover, there is evidence that infants discharged from the NICU with more than 3 follow-up appointments are at risk of missing at least 1 appointment, with the most attended appointments being their primary care appointments.42,43 These studies emphasize the social factors associated with decreased follow-up after discharge, highlighting the importance of systematically screening for social needs and supporting families with resources throughout the spectrum of care.

Implementation considerations in the NICU

Implementation of HRSN screening in the NICU requires careful thought and planning (Table 1).45 Key to implementation is an inclusive stakeholder group made up of parents, unit leadership, clinicians (ie, nurses, advanced practice providers, physicians), social workers, and community agencies/partners. Regardless of who conducts the screening, all health care providers should understand the rationale for screening and buy into its relevance to care. Coordination, including selecting a screening tool, who will screen, the method for screening (eg, paper, tablet, verbal), workflow coordination, documentation, and tracking, require considering pros and cons relevant to the specific context because there is no “one-size-fits-all” approach.30

TABLE 1.

Example Guide for Implementation of Social Needs Screening in the NICU

Steps Considerations
Create a multidisciplinary QI team Team can include neonatologists, residents and advanced practice providers, nurses, social workers, nursing director, physician QI lead and/or unit lead, community-based organizations, and a family partner(s).
Choose a social risk screening tool Investigate current tool(s) being used in your health system. Some tools may already be integrated into your EHR and/or workflows. For example, Cordova-Ramos et al48 used the existing tool “THRIVE,” which was already integrated into their EHR. This tool was adapted to the NICU context.
Create a local resource guide for unmet needs
  • Investigate whether current resource guides exist in your health system.

  • Collaborate with social workers, community-based organizations, and family partners to develop a resource guide.

  • Reach out to resources to ensure contact information is functioning and resources have capacity.

Develop a SMARTIE aim Example: “Increase systematic social risk screening and rates of connection with resources from baseline to ≥50% over a 14-month period.”48
Collaboratively create a driver diagram or fishbone diagram Examples of key drivers to include48:
  • Lack of standardized social risk screening tool

  • Lack of process to connect parents with resources when an unmet need is identified

  • Lack of knowledge about available resources

  • Lack of workflow integrating social risk screening into routine care

  • Lack of knowledge and skills to conduct social risk screening

Create an implementation process Brainstorm the following in your context46:
  • One-on-one interview vs parent survey (paper, digital)

  • Who will perform the screening? What communication training should they receive?

  • Who will be screened?

  • When should the screening take place? How often will you screen?

  • Which family member will be asked to complete the screen?

  • How will positive screening be approached? How will you follow up with referrals provided to families?

  • How will the results be communicated with the follow-up provider after discharge?

Create a data tracking plan Aim to track screening rates and referral provision and connection rates. Stratify data by social factors (eg, parental race/ethnicity and primary language) to ensure all groups are assessed and supported in an equitable manner.
Update, iterate, and improve based on family feedback Build processes to gather feedback from parents and other stakeholders on the usability and helpfulness of screening and resources.

Abbreviations: EHR, electronic health record; NICU, neonatal intensive care unit; QI, quality improvement.

Adapted from Cordova-Ramos et al.48

Empathetic and trauma-informed communication training plays a vital role in conducting respectful screening in the NICU. This is particularly important because screening involves assessing sensitive topics, and establishing trust is essential in this process. For example, beginning the screening process with a disclosure is critical. Drs Cordova-Ramos and Parker recommend framing screening as universal (to emphasize the process being the standard for all families to avoid anyone feeling targeted), confidential, and voluntary.46 It is also important to set expectations because some resources may not be immediately available upon referral.46

Designing NICU screening and referral processes centering on caregivers who screen positive is paramount. At a minimum, teams can develop a guide with local resources to address the needs identified that ideally have the capacity for referrals.46 Resource guides should be translated into the languages of the unit’s patient population and updated regularly to ensure the accuracy of the information. Different approaches have been used to provide resources to families, from providing caregivers with information about relevant resources to processes that offer more hands-on assistance and allow feedback from agencies to close the loop on a successful referral.46,47 With all the intricacies involved in implementing and sustaining social needs screening and referral processes, nurturing community partnerships is critical. These vital relationships have been shown to significantly improve both the accessibility and the use of resources needed to support NICU families.46,48

Multiple ethical considerations are also involved in implementing HRSN screening and referral processes in the NICU.49 For one, teams should ensure that screening is done sensitively so that these processes do not cause harm, either by retraumatizing or eroding the trust and relationship between caregivers and their infant’s care team. There should also be consideration for how to approach identified unmet social needs that cannot be addressed. Parents may also enter these screenings with fear of being reported to Child Protective Services or immigration enforcement, so teams should emphasize confidentiality as well as the voluntary nature of screening and provide reassurance that unmet social needs alone are not an indication for involvement of Child Protective Services. Documentation and data sharing are also important considerations, especially because caregivers and their proxies have more access to their medical records with the 21st Century Cures Act.49

QI, particularly equity-focused QI framework, provides helpful tools not only for implementing HRSN screening and referrals but also for tracking key metrics stratified by demographics to ensure efforts help all.50,51 QI efforts on implementing HRSN screening in perinatal and neonatal settings, including lessons learned and best practices, have been published at the local and state levels.47,48 Continual feedback and data monitoring are needed for continued improvement. Many of these considerations are recommended as part of a comprehensive list of “Potentially Better Practices (PBPs),” which aim to improve the quality of care by cultivating health equity, assessing and addressing HRSN, and reducing social disparities, beginning before birth through childhood, termed “follow through.”52 Relevant PBPs to HRSNs screening include “promoting a culture of equity”; providing routine access to educational and developmental interventions for all high-risk NICU graduates after discharge, including HRSN screening throughout childhood; collaborating with community programs; advocating for social justice; and continuous QI programs inclusive of all stakeholders, most importantly caregivers of diverse backgrounds.3,52

EXPERT COMMENTARY BY DR CORDOVA-RAMOS

Because preterm birth disproportionately occurs among historically marginalized communities and low-income households, these groups are overrepresented among the families we serve in the NICU. Systematic social needs screening and referral to resources are, therefore, PBPs to identify and address unmet social needs and positively alter the health and well-being trajectories of infants and families.53 However, for this practice to deliver on its promise, the underlying assumptions are that families trust their clinical teams enough to disclose this potentially stigmatizing information, that clinical teams will be responsive to the identified needs by providing targeted resources, and that families will overcome the administrative burdens that often characterize enrollment in social safety net programs. These assumptions may be flawed in multiple ways, particularly in the NICU setting, where families are at an especially vulnerable time of their lives. Families who are asked screening questions may feel singled out, discriminated against, judged, or fearful about this information being used against them. Approaches to social needs screening should be thoughtful and intentional to avoid unintended consequences (Table 1). In conjunction with activities listed in Table 2, NICU teams may consider the following:

  • Incorporating the perspectives of families as a key focus when designing screening and referral initiatives.

  • Using social needs screening and referral programs in the NICU to augment, not replace, the crucial role of NICU social workers. Aiming for the first social work contact with families within the first week of admission, ideally before the birthing parent is discharged.

  • Favoring strength-based over deficit-based approaches (eg, “Do you need support with…?” over “Do you lack…?” or “Do you have trouble with…?”). Including assessments of families’ strengths and support systems.

  • Normalizing screening and reducing stigma with the use of disclosure statements, making clear that the screening’s purpose is to offer support and that screening is universal, confidential, and voluntary. Explaining how the information will be used, with whom it will be shared, and why.

  • Establishing clear pathways to connect families with resources when needs are identified and ensuring that referrals are never an impasse for families. Seeking community partnerships and considering longitudinal navigation services when feasible. Considering universal resource provision (eg, offering available resources to all families) over screening when the burden of a need is high and resources are available.

  • Recognizing your own biases and acknowledging the power dynamics and social and cultural norms around disclosing needs and requesting assistance. Considering training in trauma-informed care and empathic inquiry for all screening providers.

  • When feasible, consider using primary nurses, peer counselors, family navigators, or other family support roles as screening providers who should work closely and collaboratively with social workers.

  • Using screening information to understand and validate families’ experiences, connect families with resources, adjust care plans, and ensure a safe discharge home. With families’ permission, communicating this information to the outpatient medical home for continued support.

  • Ensuring screening and resource information is available in multiple languages. Understanding your community’s resources available to both undocumented and documented immigrant families and refugees, including immigration legal resources.

  • Iteratively improving screening, referral, and resource quality workflow—leveraging data to advocate for more or better resources for families. Equity-focused QI may be a helpful framework.50

TABLE 2.

Suggested Activities in the NICU to Address the Effects of SDOHs

Level Personnel Involved Suggested Activities
Individuals Any person caring for parents and newborns (including physicians, advanced practice providers, nurses, social workers, pharmacists, etc) Reflect on the case
  • What do you understand about the efforts and resources needed for parents to come to the NICU to spend time with their infant(s)?

  • How do you think SDOHs impacted the care of the twins?

  • Would certain aspects of the care of the twins have changed had the social needs of the parents been revealed prenatally or earlier in the hospital admission?

  • What could have been done differently?

Reflect on your care practices
  • Do you ensure that the social aspects of each patient are addressed regularly?

  • How do you build trust with caregivers?

  • Are you familiar with the available medical interpreter resources and how to access them?

Avoid stigmatizing language and promoting stereotypes
  • Details of a patient's social situation should remain confidential and only be shared if necessary and only with those who are directly involved in the patient's care and have a legitimate need to know, either to ensure safety or to provide assistance.

  • Be careful not to label patients and families based on their diagnosis or circumstances (ie, the “NAS baby,” the “homeless mom,” the “refugee family,” the “family that never visits”).

  • Approach discussions involving a family's social needs with respect and empathy.

  • Use screening information to understand and validate families' experiences, connect families with resources, adjust care plans, and ensure a safe discharge home.

Familiarize yourself with your institution's standard for social needs screening
  • Is there a standardized process to ensure that all patients are screened for HRSNs?

  • Who is responsible for screening for HRSNs?

  • What resources are available to support families when social needs are identified?

Support proper follow-up
  • “Collaborate across inpatient and outpatient providers for early identification of SDOH needs and effective facilitation of successful linkage to resources after discharge.”47

Clinical teams Multidisciplinary teams made up of various medical professionals who care for newborns Conduct regular multidisciplinary check-ins to discuss any identified barriers to care
  • Keep track of which patients have had an initial assessment for social needs and follow-up plans, including processes to ensure successful referrals for those with unmet needs.

  • Aim for the first social work contact with families within the first week of admission, ideally before the birthing parent is discharged.

  • “Triage SDOH need urgency in the process flow to effectively use case management, patient navigation or social work support resources.”47

  • Ensure that all identified barriers are communicated to the appropriate medical team member(s), including language and cultural considerations.

Discuss how best to partner with families to connect them with the resources they need
  • Incorporate the perspectives of families as a key focus when designing screening and referral initiatives.

  • When providing families resources, set clear expectations on which tasks would be considered the family/caregiver's responsibility and what is going to require assistance. Check in with families to close the loop on their tasks and offer support throughout.

Institutions A dedicated interdisciplinary group responsible for optimizing and improving policies around screening for HRSNs, addressing the associated barriers to care, and providing resources to families in need. This includes both those caring for newborns and those caring for expecting parents (eg, unit leadership, physicians, advanced practitioners, nurses, social workers, pharmacists, case managers, and family representatives and/or community council members). Recognize families may not trust in or always understand the medical or social system
  • Foster a culture of nonjudgment, trustworthiness, and support.

  • Use trauma-informed care principles to build trust and reduce stigma for parents.

  • Favor strength-based over deficit-based approaches (eg, “Do you need support with…?” over “Do you lack…?”).

  • Use family-centered language to explain available resources and the purpose of referrals.

EHR optimization
  • Streamline documentation by integrating validated screening tools into the EHR and/or by creating note templates.

  • Track screening and referral metrics stratified by social factors (eg, race, ethnicity, preferred language, etc) and regularly review data to ensure inequities are improved.

Build capacity to meaningfully and respectfully screen for and address HRSNs
  • Ensure screening and resource information is available in multiple languages.

  • Design HRSN screening and referral programs to augment, not replace, the crucial role of NICU social workers.

  • When feasible, consider primary nurses, peer counselors, family navigators, or other family support roles as screening providers working closely and collaboratively with social workers.

Recognize the intersectionality of health care needs and support advocacy efforts that promote change
  • Advocate for institutional- and policy-level changes that address systemic social inequities impacting health.

  • Support public health initiatives that promote health equity and better social circumstances for children and families.

  • Advocate for transparent and compassionate immigrant and refugee policy and processes.

  • Partner with local and national organizations, food banks, housing agencies, medical–legal partnerships, etc, to provide support for unmet social needs.

Abbreviations: EHR, electronic health record; HRSN, health-related social need; NAS, neonatal abstinence syndrome; NICU, neonatal intensive care unit; SDOH, social driver of health.

CONCLUSIONS AND MOVING FORWARD

The complex interplay of various SDOHs profoundly impacts the experiences and outcomes of patients and their families, both in the NICU and after discharge. The family referenced in the case not only had to navigate the challenges of having preterm twins but also those of being refugees far from home and speaking little to no English. Without knowing the family’s social context, the medical team could have interpreted the lack of parental visitation as a reflection of how much they cared about their infants (ie, the wrong “diagnosis”) when their absence (ie, the “symptom”) was the downstream consequence of the challenges they were facing at home.

Financial challenges impacted the family’s ability to maintain adequate nutrition, keep their home’s temperature safe, and spend time with their newborn infants while in the NICU. These unmet social needs directly affected their infants in the NICU because they posed significant barriers for the infants’ birthing parent to have enough calories, rest, and resources to make milk and ferry it to the NICU. This highlights how the challenges families face extend beyond just the medical needs of their hospitalized infant(s), including critical social, economic, and environmental factors that can affect not only their own health but also the health and well-being of their infants, even while in the NICU.

Recognizing how HRSNs can impact an infant’s home life, health, and development after discharge emphasizes the importance of HRSN screening and intervention while in the NICU. However, HRSN screening is not without its challenges (eg, stigma, resource limitations, operational difficulties). Strategies to mitigate these challenges include fostering a culture of trust with clear disclosures and processes to address needs, using empathetic and trauma-informed communication approaches and integrating families, social workers, and community-based organizations (Table 2). In conclusion, HRSN screening, along with effective referral to and uptake of helpful resources, has the potential to positively impact the health and well-being trajectories of infants and families.52 It is through these efforts that we can work toward advancing neonatal and perinatal health equity.54

PRACTICE GAP(S) OR EDUCATION GAP(S).

Social drivers of health (SDOHs) play a significant role in patient care and clinical outcomes. Neonatal providers must understand the role of SDOHs in patient outcomes. Additionally, they should be familiar with evidence-based approaches for routine screening and addressing unmet social needs.

OBJECTIVES After completing this article, readers should be able to:

  1. Reflect on the role of social drivers of health in providing equitable care in the neonatal intensive care unit (NICU).

  2. Describe the current state of screening for and addressing health-related social needs in the NICU.

  3. Identify approaches and resources for the implementation of health-related social needs screening.

American Board of Pediatrics Neonatal-Perinatal Content Specification.

  • Understand principles of resource organization, use, and management (eg, principles of value in health care).

  • Understand the need for advocacy for the unmet health care needs of the maternal–infant dyad.

  • Recognize health equity and health disparities (eg, access, SDOHs, implicit bias, systemic racism).

Acknowledgments

We thank Daria Murosko, MD, MPH, FAAP; Kathryn Paul, MD, FAAP; and the equity, diversity, and inclusion (EDI) NeoReviews team. In loving memory of our remarkable colleague and friend, Dr Allison Rose, whose unwavering and selfless dedication to advocacy, education, and improving neonatal care continues to inspire us and improve patient outcomes. We hope this work honors her legacy and embodies the mission she so passionately lived by, which was “rooted in the belief that every infant, regardless of socioeconomic background, deserves the highest standard of medical attention and support during their critical days of early life.”

AUTHOR DISCLOSURE:

Dr Kendrick-Allwood works under a grant from the Cerebral Palsy Foundation, has received honoraria from the Georgia Chapter of the America Academy of Pediatrics, and is a part of a data safety advisory board for the APPLES-tele research project. Dr Rule has received honoraria as a part of the American Academy of Pediatrics (AAP) National Conference and Exhibition (NCE) 2024 Faculty. Dr Wolf has worked under a grant from the National Institutes of Health (NIH). Drs Reynolds, Cordova-Ramos, McLaughlin, and Peña have disclosed no financial relationships relevant to this article. This article does not contain a discussion of an unapproved/investigative use of a commercial product/device.

ABBREVIATIONS

AAP

American Academy of Pediatrics

HRSN

health-related social need

IRF

immigrant and refugee family

NICU

neonatal intensive care unit

PBP

Potentially Better Practice

QI

quality improvement

SDOH

social driver of health

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Suggested Materials

  1. Vermont Oxford network potentially better practices for follow-through: practical guide videos on screening for social determinants of health by Drs Cordova-Ramos and Parker (https://public.vtoxford.org/health-equity/practical-guides/)
  2. Cordova-Ramos EG, Jain C, Torrice V, et al. Implementing social risk screening and referral to resources in the NICU. Pediatrics. 2023;151 (4):e2022058975. [DOI] [PMC free article] [PubMed] [Google Scholar]
  3. Lee King P, Surenian A, Odom RM, Shah K, Lee S, Jenkins E, Borders A. Using quality improvement to address social determinants of health needs in perinatal care. Semin Perinatol. 2024;48(3):151908. [DOI] [PubMed] [Google Scholar]
  4. American Academy of Pediatrics. Poverty and child health: practice tips and suggested screening tools (https://www.aap.org/en/patient-care/poverty-and-child-health/poverty-and-child-health-practice-tips/)

RESOURCES