Trauma-Informed Care in the Neonatal Intensive Care Unit: Infants, Families, and Care Teams.

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Abstract
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In the neonatal intensive care unit (NICU), patients, families, and care teams are all likely to undergo traumatic experiences. Infants are separated from their parents and undergo multiple painful or stressful procedures. Families experience fear for their infants' health and survival and the disempowerment coming with a loss of parental role; many also experience differential treatment by race, language, or other factors. Care teams bear witness to the illness and sometimes death of infants and the pain of their families. All these and many other experiences constitute trauma, which may impact the long-term course of infants and families. Trauma-informed care has therefore been promoted as a universal practice. In the NICU, trauma-informed care principles may be applied to help optimally care for infants and their families as well as to support members of the care team.

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  • Cite Count Icon 1
  • 10.1097/anc.0000000000000777
Noteworthy Professional News
  • Jul 8, 2020
  • Advances in Neonatal Care
  • Sue L Hall + 2 more

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  • 10.1007/s00431-022-04542-4
Management pathway for infants requiring chronic care in neonatal units-a scoping review of practices.
  • Jul 4, 2022
  • European journal of pediatrics
  • Amitava Sur + 2 more

Improvements in diagnostic and therapeutic modalities of antenatal care has meant that the neonatal intensive care units (NICU) need to care for infants with complex congenital conditions who need ongoing care post discharge. This, along with improved survival of the extreme preterm infants, provides the neonatal team with a cohort of infants who require long-standing multi-disciplinary input. However, provision of dedicated teams looking after infants with complex medical needs is not commonly reported in NICU workforce structure. The objective of this study is to perform a scoping review of literature on the presence of structured and dedicated complex care management teams in neonatal intensive care unit and their outcomes on care delivery. A scoping review was undertaken to identify all reported literature on existence of chronic care teams in NICU searching medical databases. A narrative synthesis of results was prepared. Conclusions: The review identified very few clinical models reported with no robust data on clinical outcome measures. What is Known: • Neonatal units are increasingly providing care for infants who require chronic ongoing input from multiple specialties or allied health professionals. A majority of this cohort is formed by extreme preterm infants who require long term respiratory support or nutritional rehabilitation. • There are examples of dedicated clinical teams looking after complex patients in adult and pediatric intensive care outfits leading to improvements in outcome. What is New: • This is first literature review in the authors' knowledge on the use of complex care teams in neonatal intensive care unit. • This article provides a narrative synthesis of the clinical models that have been used by complex care teams in neonatal intensive care unit and whether they have demonstrated tangible benefits in patient outcome.

  • Research Article
  • Cite Count Icon 5
  • 10.1080/01612840.2023.2250000
Application of Trauma-Informed Care Principles to Care Needs Identified by Mothers of NICU-Hospitalized Children
  • Aug 17, 2023
  • Issues in Mental Health Nursing
  • Sarah M Rodrigues + 5 more

Systematic uptake of family-centered care (FCC) interventions remains challenging and frequently suboptimal in many neonatal intensive care units (NICUs). Across NICUs in the United States, integrating family members as partners in infant caregiving and decision-making has not been well supported and routine screening and provision of psychological support for parents remains inadequate. Trauma-informed care (TIC) may offer a more comprehensive approach to NICU care which can encompass FCC principles and promote family recovery and resilience by recognizing and responding to the traumas experienced by NICU infants and families. The current paper aimed to understand needs identified by mothers of NICU-hospitalized children and reports a focused analysis of one-on-one interview data (n = 13 mothers) collected during a larger mixed methods study. Reflexive thematic analysis was used to understand needs identified by mothers and to explore how these needs aligned with TIC principles. Six themes were identified and subsequently examined in the context of the principles of TIC: I Just Had No Control, That Really Caught Us Off Guard, So Much Was Already Taken Away, We’re People and There Needs To Be More Support and Practices Which Helped. Mothers’ care needs were found to align with TIC principles. Findings suggest that implementation of TIC principles in NICU settings can support parental presence, participation in infant care, and mental health and support the potential of TIC as a more comprehensive approach to meeting the needs of NICU parents.

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  • Research Article
  • Cite Count Icon 4
  • 10.3390/ijerph21081046
Sexual and Reproductive Healthcare Needs of Refugee Women Exposed to Gender-Based Violence: The Case for Trauma-Informed Care in Resettlement Contexts.
  • Aug 8, 2024
  • International journal of environmental research and public health
  • Cherra M Mathis + 7 more

This paper assesses literature regarding the sexual and reproductive healthcare (SRH) needs of resettled refugee women who experienced gender-based violence (GBV) and trauma-informed care (TIC) principles utilized among SRH service providers. A systematic search identified relevant studies published between 2000 and 2021; no articles found reflected both SRH and TIC principles among refugee women. The search was therefore separated into two aims: to review the literature about SRH needs for refugee women in resettlement countries who experienced GBV (Aim 1) and to examine the use of TIC principles in SRH care among women who experienced GBV (Aim 2). Thematic analysis of the articles identified key themes. Twenty-six articles were included in the analysis across both aims (Aim 1 = 8, Aim 2 = 18). Aim 1 articles shared three factors shaping the SRH needs of resettled refugee women: the centrality of violence and trauma; structural barriers to SRH care; and actions, practices, and resources for service providers. Aim 2 articles illustrated seven key principles of TIC used in SRH service provision, such as empowerment; trauma-specific services and integrated care; connection; safety; collaboration; identity culture and context; and trustworthiness. Resettled refugee women's experiences of violence necessitate trauma-informed SRH health care. While there is limited peer-reviewed literature regarding TIC-SRH care for refugee women, the findings regarding the SRH needs of refugee women and the findings regarding the implementation of TIC in SRH collectively frame recommendations for how SRH can be infused with TIC. An example from practice, in the form of the Refugee Women's Health Clinic, is included as an exemplar of TIC SRH principles in action for the health of resettled refugee women who have survived gendered violence.

  • Research Article
  • 10.1186/s12887-025-06351-8
Cluster-randomized evaluation of neonatal intensive care unit quality improvement interventions in extremely preterm infants: secondary analysis of the INTACT trial
  • Jan 5, 2026
  • BMC Pediatrics
  • Katsuaki Toyoshima + 13 more

BackgroundThe Improvement of Neonatal Intensive Care Unit (NICU) Practices and Team Approach Cluster-randomized Controlled Trial (INTACT) tested a multidisciplinary quality improvement (QI) program but did not show improved survival without neurodevelopmental impairment at 3 years among infants with very low birthweight. However, the program’s potential effect on acute-phase outcomes in extremely preterm infants (< 28 weeks of gestation) warrants further evaluation. This secondary analysis aimed to assess the effect of the INTACT study’s QI intervention based on participatory learning and action on acute morbidities during the NICU stay and outcomes at 3 years of age.MethodsWe performed a secondary analysis of data from the INTACT trial, a cluster-randomized controlled trial conducted in 40 Japanese NICUs from 2012–2014. Infants were stratified into two gestational age groups (22–24 weeks and 25–27 weeks). The primary outcome was a composite of seven acute morbidities (pulmonary air leak syndrome, pulmonary hemorrhage, sepsis, severe intraventricular hemorrhage, intestinal perforation, necrotizing enterocolitis, or circulatory collapse) between the intervention (QI program) and control groups. Secondary outcomes included chronic morbidities diagnosed before NICU discharge and long-term outcomes at 3 years of age. Multivariable logistic regression and Holm’s correction for multiple comparisons were applied.ResultsIn the 25–27-week subgroup, the intervention group showed a significantly lower rate of composite acute morbidity than the control group (31.3% vs. 40.3%; adjusted odds ratio [OR] 0.67; 95% confidence interval 0.50–0.90; p = 0.008). In the 22–24-week subgroup, composite acute morbidity did not differ significantly; however, sepsis (adjusted OR: 0.44, Holm-adjusted p = 0.010) and pulmonary hemorrhage (adjusted OR: 0.27, Holm-adjusted p = 0.028) were significantly reduced. After multivariable adjustment and Holm correction, no differences in neurodevelopmental outcomes at 3 years of age were observed between groups.ConclusionsThis secondary analysis of a cluster-randomized controlled trial demonstrated that the intervention group receiving a NICU-specific QI program had reduced acute-phase morbidities, particularly among infants born between 22 and 27 weeks of gestation. Our findings highlight the potential for widespread clinical implementation of QI programs based on participatory learning and action in neonatal intensive care.Supplementary InformationThe online version contains supplementary material available at 10.1186/s12887-025-06351-8.

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Developing and validating a trauma-informed care toolkit for internal medicine residents: A patient-centered, multistakeholder approach.
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  • 10.1093/pch/21.supp5.e85b
Restructuring Care Teams Within a Neonatal Intensive Care Unit
  • Jun 1, 2016
  • Paediatrics &amp; Child Health
  • C Ward + 4 more

BACKGROUND: Organizing care teams in a large neonatal intensive care unit (NICU) is a challenge. In our pod-based model, babies were assigned a care team based on acuity and bed location. They were frequently moved between teams to accommodate nursing assignments, causing an imbalance in patient census and acuity across teams. As part of a larger process improvement project, we implemented and studied an alternate model for assigning patients to a care team. OBJECTIVES: The objective of this project was to improve consistency of patient care and to balance the workload across the three care teams in the NICU. DESIGN/METHODS: The setting is a 69 bed tertiary teaching NICU with approximately 1300 admissions a year. Three clinical teams share day to day assignment of a combination of these level III and level II pods. A multidisciplinary subgroup conducted a two hour Kaizen (brain storming) event with a larger group of stake-holders during which the decision was made to assign babies to a care team based on current workload of each team. The care teams follow each patient from admission to discharge, regardless of the baby’s location within the unit instead of moving babies between teams. Education communication, feedback strategies regarding the process change were formulated and executed by the sub-group. The new method was piloted for a period of three months. Objective data was collected regarding patient movement, patient acuity, census balance, and rounds time. Qualitative data was collected through staff and family surveys. ignments, causing an imbalance in patient census and acuity across teams. As part of a larger process improvement project, we implemented and studied an alternate model for assigning patients to a care team. RESULTS: Forty percent of babies admitted to the NICU crossed care teams during their stay prior to the process change while 0.3% changed teams after the change. The number of moves per patient decreased from 1.4 to 1.27. The variability in both census and acuity was diminished following implementation of the changes. The daily average number of man-hours to complete daily rounds decreased from 47.5 before the change to 40.5 after the change. There was a 35% response rate to the staff survey with an overall positive response to the changes with regards to improving the patient and family experience. The family satisfaction survey showed a trend toward increased satisfaction following the change. CONCLUSION: Process improvement methods can be used to successfully change how care teams are structured in a tertiary NICU.

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  • 10.15766/mep_2374-8265.11061
Teaching Trauma-Informed Care: A Symposium for Medical Students.
  • Dec 30, 2020
  • MedEdPORTAL
  • Binny Chokshi + 5 more

A large body of evidence links exposure to childhood trauma with negative health outcomes. Training future physicians to recognize and respond to trauma is paramount, and engaging medical students in the preclinical years affords the opportunity to foster the development of a trauma-informed lens that can then be solidified during clinical clerkships. We developed and implemented a 4-hour trauma-informed care (TIC) symposium for 179 second-year medical students at the George Washington University School of Medicine and Health Sciences during the Patients, Populations, and Systems course. The symposium included three interactive didactic sessions focusing on the connection between trauma and health and TIC principles. A facilitated small-group discussion allowed students to apply TIC principles to a patient case, followed by reflection and evaluation. The overall rating of the TIC symposium was 4 out of 5. Strengths included integration of a small-group case with discussion on application of TIC in practice, experience of the lecturers and small-group facilitators, and review of research relating adversity to specific health outcomes. Suggestions for improvement included incorporating role-play and standardized patients. Content analysis of student reflections mapped to the domains of physician competency. A 4-hour symposium can affect student knowledge and understanding of TIC. Teaching TIC presents an opportunity to prepare medical students for a career in medicine through cultivation of required physician competencies. Next steps include enhanced opportunities to practice TIC and follow-up analysis of participants to determine behavior change during clinical years.

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  • 10.1097/mop.0000000000001011
Maternal postpartum depression: risk factors, impacts, and interventions for the NICU and beyond.
  • Mar 31, 2021
  • Current Opinion in Pediatrics
  • Samuel M Shovers + 3 more

Postpartum depression (PPD) negatively impacts caregivers, infants, siblings, and entire families. Mothers with infants admitted to the neonatal intensive care unit (NICU) face additional risk for PPD, coupled with risk factors extending beyond a NICU admision. The novelty of this review is the focus on maternal PPD for mothers with infants admitted to the NICU. Interventions aimed at limiting and preventing PPD in this population include: prenatal and postpartum depression screening, PPD symptom awareness and monitoring, and trauma-informed care. PPD, the most frequent complication of childbirth, affects approximately 10-15% of mothers worldwide. Prevalence rates increase to 40% for mothers whose infant is admitted to the NICU. PPD can affect maternal and child health across the life course and predispose future generations to a myriad of developmental, psychosocial, and physical challenges. Prevalence rates are higher for racial and ethnic minorities, immigrant and refugee populations, and mothers in rural locations. Trauma-informed care is suggested at individual and organizational levels, leading to better care for those with and without previous trauma exposure. Increasing PPD symptom awareness, screening for PPD, and connections with resources should begin during prenatal visits. Care teams should discuss barriers to resources for mothers, children, and families to improve access and support.

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Interactive Case-Based Childhood Adversity and Trauma-Informed Care Electronic Modules for Pediatric Primary Care.
  • Oct 12, 2020
  • MedEdPORTAL
  • Binny Chokshi + 2 more

IntroductionTraining health professionals for the skills and capacity to respond adequately to children and adults who have been exposed to adverse childhood experiences is recognized as an essential need in health care. Accessible opportunities to educate physicians and physician-trainees are limited.MethodsFour computer-based e-modules were created focusing on addressing childhood adversity and implementing trauma-informed care in the pediatric primary care setting. These childhood adversity and trauma-informed care (CA-TIC) e-modules were designed as an individualized, self-directed experience to allow for distance learning with flexibility to be embedded into existing coursework. To foster an engaging learning environment, we narrated the modules, prioritized images, and included the opportunity for participant interaction via multiple-choice and short-answer questions. Twenty-eight pediatric residents, two medical students, four attending physicians, and one fellow at Children's National Hospital completed the e-modules.ResultsOverall, participants rated the CA-TIC e-modules 4.6 (SD = 0.5) out of 5 for design and quality. Using paired t tests and Wilcoxon signed rank tests, we found statistically significant score increases from presession to postsession for participants' knowledge, attitudes, practice, and confidence related to CA-TIC. The most commonly cited learning points and practice changes included asking about trauma in practice and the seven C's of resilience.DiscussionA trauma-informed, strengths-based approach to care can assist health care providers in mitigating the link between adversity and related poor health outcomes. The CA-TIC e-modules provide an opportunity to train health professionals using an innovative, self-directed, and low-resource mechanism.

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  • 10.2196/preprints.77876
Current Landscape of Mental Health Conversational Agents from a Trauma-Informed Care Lens: Scoping Review (Preprint)
  • May 21, 2025
  • Faye Kollig + 4 more

BACKGROUND Conversational agents (CAs) are increasingly developed and deployed in a mental health context, raising questions of how to safely and ethically implement them. OBJECTIVE This scoping review identifies SAMHSA's trauma-informed care (TIC) framework as one avenue to do this and examines how the framework’s six core principles are currently being operationalized in the design and evaluation of mental health CAs (MHCAs), including relevant gaps and patterns within design recommendations. METHODS Online databases, as well as a secondary survey of citation lists from an initial search, were used to identify English-language journal articles and conference proceedings from 2000-2024 that empirically evaluated an independent, web- or app-based, unassisted conversational agent (CA) used for mental health, as well as including concepts from TIC. RESULTS Our analysis included 38 publications (68.4% published in 2020 or later) that explored 28 distinct MHCAs. 60.6% used experimental methods and 36.8% were user studies, with study samples skewing female (avg. 34.92% male), young (avg. age 32.52), and nonclinical (76.3%). MHCAs were largely rule-based prototypes. No studies cited TIC; 25 used terms explicitly included in TIC principles, though usually did not define them, while 38 used language that could be implicitly linked to one or more TIC principles. Overall, TIC principles were explicitly or implicitly included in disjointed and inconsistent ways across papers, but most often appeared in intervention design descriptions, assessed qualitatively, or were items in questionnaires evaluating other concepts. Trust, safety, transparency, empowerment, and collaboration were comparatively well-addressed, while peer support and cultural sensitivity were largely absent. Design recommendations, where present, were relatively broad and emphasized primarily customizability, consistency, and strengthening of user-MHCA relationships. CONCLUSIONS Studies did not self-identify as using SAMHSA’s TIC, making it more difficult to identify its elements. The fragmented terms, disciplines, and metrics used make it difficult to draw more systematic conclusions about the current research landscape related to TIC, but our analysis indicates TIC to be a descriptive and potentially unifying framework and provides a starting point for explicitly trauma-informed MHCA research and design.

  • Front Matter
  • Cite Count Icon 123
  • 10.1542/peds.2021-052579
Trauma-Informed Care in Child Health Systems.
  • Aug 1, 2021
  • Pediatrics
  • James Duffee + 3 more

Recent progress in understanding the lifelong effects of early childhood adversities has clarified the need for an organized strategy to identify and intervene with children, adolescents, and families who may be at risk for maladaptive responses. Trauma-informed care (TIC) in child health care operationalizes the biological evidence of toxic stress with the insights of attachment and resilience to enhance health care delivery to mitigate the effects of trauma. The resulting pediatric health care delivery strategy promotes and restores resilience in children and adolescents, partners with families to support relational health, and reduces secondary trauma among pediatric health care clinicians. This policy statement summarizes what policy makers, legislators, and health care organizations need to consider in terms of infrastructure, resources, and financial support to facilitate the integration of TIC principles into all pediatric points of care. The accompanying clinical report describes the elements of TIC in the direct care of children, adolescents, and families and covers the spectrum from prevention to treatment. The recommendations in this statement and the clinical report build on other American Academy of Pediatrics policies that address the needs of special populations (such as children and adolescents in foster or kinship care, in immigrant and refugee families, or in poor or homeless families) and are congruent with American Academy of Pediatrics policies and technical reports concerning the role of pediatric clinicians in the promotion of lifelong health.Over the past 2 decades, basic science has explained how cumulative adverse childhood experiences in the relative absence of safe, stable, nurturing relationships (SSNRs)1 alter neurohormonal stress responses, gene expression, telomere length, brain development, and immunity, enabling researchers to elucidate how the body biologically embeds childhood trauma. Recent studies of toxic stress support assertions that the origins of lifelong health are in early childhood and that chronic stress in childhood strongly predicts adult health status.2,3 In the context of expanding evidence, pediatricians and others involved in community-based early childhood systems need strategies to mitigate the damaging effects of early childhood trauma and to promote resilience in children and families. Trauma-informed care (TIC) offers an organizing principle for pediatric practice that improves awareness of the spectrum of trauma-related symptoms, promotes an emotionally safe environment of care, and provides specific interventions to mitigate the effects of trauma exposure.4,5 This policy statement presents recommendations for policy makers, legislators, and health care organizations for implementation of TIC into pediatric health systems. The accompanying clinical report6 presents best-practice guidance for TIC in the direct care of children and adolescents.TIC is defined by the National Child Traumatic Stress Network as medical care in which all parties involved assess, recognize, and respond to the effects of traumatic stress on children, caregivers, and health care providers. TIC also includes attention to secondary traumatic stress (STS), the emotional strain that results when an individual, whether a health care worker or parent, hears about or witnesses the traumatic experiences, past or present, of children.Every pediatric encounter presents opportunities to promote family resilience and relational health.7 Informed by research in infant mental health and neurodevelopment, early relational health refers to the establishment of foundational relationships during the first 3 years of life that are central to successful physiologic, emotional, and moral development of the young child.8 Relational health, in a more general sense, is applicable to all age groups, is dyadic, and includes the capacity of both the child and caregiver to enter into a safe, secure, nurturing relationship allowing both to thrive.1,9,10 Strong foundational relationships support resilience and buffer stress in children, so they can be considered primary prevention of stress-related disturbance. Trauma-informed practices also support relational health and family resilience as important protective factors for those who have been exposed to persistent adversity or potentially traumatic events (see Fig 1).Human neuroendocrine–immune networks respond to internal and external sensors that identify danger and safety by activating in dangerous circumstances and deactivating when danger has subsided.11 Toxic stress responses occur with prolonged activation of the neuroendocrine–immune system and dysregulation of homeostasis (or allostasis if multiple systems are involved)12 in the absence of buffering by SSNRs. Toxic stress responses can result in lifelong impairments in physical, mental, and relational health.13The concept of toxic stress adds an important physiologic basis to the study of attachment and our understanding of trauma. Trauma is defined as an event, series of events, or circumstances experienced by a person as physically or emotionally harmful that can have long-lasting adverse effects on the person’s functioning and well-being (emotional, physical, or spiritual).14 Attachment theory describes the deep and enduring relationship between a child and adult caregiver that ideally provides a secure base from which the child can develop and explore the world.15Resilience is the dynamic process of adaptation to or despite significant adversity by using protective factors and learned skills to manage stressful circumstances.16 Resilience may allow a person to experience tolerable rather than toxic stress in response to adversity. Some characteristics of resilient children include strong executive functions (self-control of attention and impulses) and a strong personal identity, often related to a cultural or faith tradition.17 However, most important to both resilience and relational health is the capacity for young children to form at least one stable, caring, and supportive relationship.9,18Almost half of American children, or 34 million younger than 18 years, have faced at least one potentially traumatic early childhood experience.19 More than 1 in 7 adults report exposure during childhood to 4 or more adverse childhood experiences such as abuse, neglect, or other household adversity,20 including intimate partner violence or parental incarceration. Certain populations are at higher risk for trauma exposure, both physical and emotional. In surveys, poverty or financial stress is the most commonly reported childhood adversity, second only to loss of a parent.21,22 Exposure to divorce, child maltreatment, sexual abuse, intimate partner violence, bullying, parental mental illness, parental substance use problems, and community violence are also common.21 Specific populations at high risk for trauma include children and adolescents who identify as LGBTQ, have developmental or behavioral problems,23–25 are in foster or kinship care, are incarcerated, are living in deep poverty, or are immigrants. Potentially traumatic environmental and community-level conditions include economic stress, school or community violence, adverse experiences during and after immigration, natural disasters, pandemics, and mass-casualty events such as shootings or bombings.Racism is a common cross-cutting risk factor. Racial, ethnic, or religious bigotry magnifies the risk inherent to other special populations.26 Experiences ranging from hate crimes, police profiling, bullying, or microaggressions to covert discrimination are traumatic events and may be internalized as trauma by those who are victims, indirectly or directly, of the events.27,28 Historical trauma refers to the collective, transgenerational emotional and psychological injury of specific ethnic, racial, or cultural groups and their descendants who have experienced major events of oppression such as genocide, forced displacement, or slavery.29,30 Originally applied to children of the Holocaust, the concept is now applied to American Indian and Alaskan native people, African American people, Mexican American people, Japanese American people, and other groups of people who have experienced mass trauma.30 Investigators link historical “soul wounding” to current health and behavioral disorders including substance use disorder, domestic violence, and suicide, particularly in Indigenous communities.29,31 Children separated from families during immigration and/or detained in group facilities overseen by the Office of Refugee Resettlement are a recent special population at severe risk for long-term sequelae resulting from forced family separation.32,33In November 2019, the Centers for Disease Control and Prevention reviewed the emerging literature linking early childhood adversity with adult illnesses20,34 and analyzed survey data from 25 states over 2 years.3,35 Researchers concluded that reducing exposure to early childhood trauma and mitigating posttrauma effects would generally and significantly reduce adult morbidity and mortality. Using logistic regression modeling, they estimated potential reductions in incidence from low for obesity (1.7%) to high for heavy drinking, chronic obstructive pulmonary disease, and depression (23.9%, 27.0%, and 44.1%, respectively). Recommendations included creating healthy communities, supporting SSNRs, and developing programs that apply primary (reducing exposure to childhood adversity) and secondary prevention (mitigating the effects of exposure) on the basis of principles of TIC.The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) presents a list of trauma-related disorders ranging from mild (adjustment disorder) to severe (posttraumatic stress disorder [PTSD]).36 Two additional categories, reactive attachment disorder and disinhibited social engagement disorder, are specific to young children (please see the DSM-5 for complete diagnostic criteria). This nosology can be expanded to describe other presentations common in pediatric health care settings: developmental trauma disorder (DTD), pediatric medical traumatic stress (PMTS), and STS, the last being most relevant for health care workers, family members, and caregivers.The diagnosis of PTSD, as outlined in the current DSM-5, does not adequately describe the variable presentations of trauma manifestations in children across developmental stages.37 Children with complex trauma histories often exhibit heterogeneous developmental symptoms as well as difficulties with intimate relationships and with regulation of attention and impulse control.38 DTD is a proposed new diagnostic category that incorporates these differences and attempts to better describe the disturbances that occur in multiple developmental domains.39 The omission of DTD in the DSM-5 has been controversial,40 and the search for a better nosology of trauma, including DTD, is ongoing.41PMTS refers to the distress that patients and family members experience during hospitalization for a perceived life-threatening diagnosis or while living with or caring for individuals with life-altering chronic conditions.42 PMTS is underrecognized and rarely addressed despite its high prevalence.43,44 Up to 80% of ill or injured children and their families may have traumatic stress reactions after a life-threatening illness, injury, or procedure.45 In some surveys, up to 20% of parents of children admitted to a PICU develop PTSD within a few months.45 The suffering of family members and caregivers is often not addressed because of existing structural and reimbursement obstacles for multigenerational care.Although research on PMTS (and on pediatric postintensive care syndrome)46,47 is ongoing, researchers in 1 study found that approximately 10% of children developed PTSD 3 to 5 months after major surgery, and 28% developed posttraumatic stress symptoms (PTSS) resulting in functional disability by parent report.48 PTSS can also occur after a severe injury or diagnosis of an illness such as cancer. In another family study, more than 10% of children had persistent functional impairment from PTSS at 6 weeks and 1 year after a potentially life-threatening injury or diagnosis, and 15% of mothers and 8% of fathers met criteria for PTSD at 1 year.49As described earlier, STS may occur in parents, other family members, and health care workers such as physicians, nurses, other hospital staff, first responders, and therapists. STS may have many of the same long-term effects on health that affect children exposed to trauma.50 Some health care workers may also develop disabling posttrauma symptoms that can interfere with quality of life both at work and home. Health care workers may have their own trauma histories that contribute to their reactions when exposed to the suffering of others. Nonclinical staff may also experience STS triggered by their own trauma histories, especially if the health care facility is located in an area with high adversity and nonclinical staff live in the vicinity.Preliminary evidence exists of a synergistic effect among STS, depression, and burnout in affected health care workers.51 STS in combination with burnout has been associated with a significant increase in the frequency of medical errors.52,53 Depression, anxiety, and suicide are greater risks for physicians than for the general population. In the United States, the rate of suicide among female physicians is 130% higher than among women who are not physicians; the rate for male physicians is 40% higher than for men who are not physicians.51 Burnout includes a spectrum of pathologic conditions that develop in the context of occupational stress and is almost twice as prevalent among physicians. The risk among nurses for burnout, depression, and STS is even higher. More than half of nurses reported suboptimal mental or physical health,54 approximately 35% reported a high degree of emotional exhaustion,55 and 18% reported depression in national surveys. Reports of posttraumatic stress among health care workers related to the coronavirus disease 2019 pandemic prompted worldwide concern for increased awareness and trauma-informed support for the mental health of all involved.56Core principles that can be helpful for policy development, outlined by the National Council on Behavioral Health (2019)57 are outlined in the following sections. Implementation of TIC at a practice level is described in detail in the accompanying clinical report.6The health care organization, workspace, and every encounter should be characterized by compassion, cultural humility, equity, collaboration, and safety for families and employees. An emotionally safe workplace includes acknowledgment of and particular attention to racial and gender discrimination, including implicit bias both in rendering care and workplace human relations. A review of health care settings from the viewpoints of patients, families, and staff can uncover practices, processes, or details in the environment that are potentially traumatizing.Hospital and health system leadership can annually review policies and procedures to ensure a safe work environment and setting to provide TIC, to reduce STS and burnout, and to promote sensitivity to the needs of trauma survivors.58 The alignment of financial and human capital resources to support an optimal health environment in all levels and locations of care is extremely important. Surveys designed to assess system readiness for implementation are available and can be adapted for pediatric health care settings.Surveillance and standardized screening to assess staff and patients for trauma exposure, symptoms, and strengths are important components of trauma-informed pediatric care. Universal screening, when implemented within the larger context of trauma-informed approaches and endorsed and supported by administrative leadership, reduces stigma and allows standardized responses such as time off or referral to an employee assistance program. Families and youth may be queried at the point of care, such as at the time of hospital admission. Formal screening should always be for the benefit of children and adolescents, avoid retraumatization, and identify protective as well as risk factors.59 More specific information about screening is included in the accompanying clinical report.6Involvement of families and youth in the development of TIC policies and practices, particularly regarding cultural, historical, and gender issues, is essential to building an environment of support and mutuality.14 Both formal and informal structures, such as Family Advisory Councils and family-centered rounds,60 create a cultural expectation of collaboration and enable the health care team to understand the strengths and vulnerabilities of individual families and of the populations served. When appropriate, tribal elders, traditional healers, and other faith community leaders can be included in developing individual care plans or institutional quality-improvement efforts. A whole-person, whole-family, whole-community perspective promotes improved awareness of how cultural backgrounds affect the perception of trauma, safety, and privacy.61,62TIC, from a public health perspective, includes primary, secondary, and tertiary prevention strategies. Primary prevention is a comprehensive approach that addresses social determinants of health (such as structural racism, poverty, and violence) that are often root causes of community trauma.63 Promotion of relational health and other resilience factors (such as strong executive function and self-efficacy) may be considered primary prevention.64 Following the fourth edition of Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, promotion of early childhood relational health is a core purpose of both pediatric primary care and early childhood education.65The National Child Traumatic Stress Network includes the promotion of child and family resilience, enhancement of protective factors, awareness of parent or caregiver trauma, and involvement of families in program development and evaluation as secondary prevention.66 Trauma-informed therapies (eg, trauma-focused cognitive behavioral therapy) for symptomatic children and youth are considered tertiary prevention. These therapies are especially important for high-risk populations as identified earlier.67–70 Attachment-based dyadic therapies, such as parent–child interaction therapy, may serve to prevent development of persistent traumatic stress symptoms in high-risk families71 and may be considered both secondary and tertiary prevention.Recruitment and pre-employment practices may help discern the capacity for empathy among prospective employees.72 Training and education of all administrators, clinicians, and staff, both clinical and nonclinical, can promote the appreciation of the lifelong effects of trauma on child and adolescent development and family resilience and the implementation of trauma-aware practices. Continuous quality-improvement programs translate new knowledge and skills about childhood trauma into supervision, training, and patient care.Prevention of STS requires specific training of all staff to raise awareness, promote resilience, and explore the interaction among STS, burnout, depression, substance use, and professional quality of life. Supportive supervision and peer mentoring offer opportunities for all employees to reflect on their own trauma histories and to promote compassion, nonjudgmental attitudes and collaboration.73Trauma-informed health care systems establish and support collaborative, interdisciplinary relationships among community and public health agencies that serve children and adolescents to coordinate care for children, adolescents, and families exposed to trauma. Schools,74 juvenile justice programs,75 mental health professionals,76 home visiting services, child welfare systems,76 and foster care agencies77 are natural partners for pediatric health organizations in promoting community resilience. Many have established TIC programs. Community early intervention programs can help prevent and mitigate adversity and often have the advantage of caring for young children in their natural environment as home visitors.78–80Federal agencies such as the Centers for Disease Control and Prevention can continue and expand research to improve understanding of the developmental effects of trauma and the efficacy of specific interventions for historically resilient populations. Urgently needed are successful strategies to interrupt the intergenerational transfer of family violence. Strategies are also crucial to blunt the impact of historical trauma in communities of color and in American Indian and Alaskan native populations in the United States.30 It is particularly important to identify the origins of and successfully mitigate community violence, including racism, misogyny, and religious, ethnic, and cultural bias.State-level resources can be directed to implementation, dissemination, and evaluation of trauma-informed community programs, such as interagency and multigenerational strategies for opioid dependency. One example of a state interagency, multigenerational treatment program is Ohio START (Sobriety, Treatment and Reducing Trauma).81 States could develop a communication infrastructure to facilitate data sharing, improve interdisciplinary/interagency cooperation, and engage community partners including foundations and academic institutions.Federal guidelines can require that state Medicaid programs ensure comprehensive coverage for all children and adolescents and pregnant mothers without regard for legal or immigration status and mandate that coverage include mental health and substance use disorder services. Financing that increases access to high-quality, comprehensive, coordinated, culturally competent health care for high-risk populations is a high priority. Federal and state regulations can require all insurers, including Medicaid and private health insurers, to include coverage for TIC elements, including surveillance, screening, diagnosis, counseling, case management, follow-up, community collaboration, mental health care, and home visiting.In large health systems, leadership can align its mission and financing with the core elements of trauma-informed systems.82 Supporting TIC includes payment for trauma-informed, integrated mental health services, care coordination, rigorous case management, and seamless referral networks for intensive treatment. Prevention of secondary trauma, including care of affected health care workers, should be built into the mission of the health system.Academic health centers train and educate the next generation of physicians, nurses, and ancillary health personnel and can promote the transformation to TIC in all health settings through education, research, and advocacy. Children’s hospitals and health systems can model mental health integration83 and trauma-informed practices throughout all service lines.84 Because children’s hospitals embrace population health management and community advocacy, they may serve as the anchor institution collaborating with community agencies to address social adversity at the neighborhood level while promoting TIC services.85 Together with community pediatric care systems, academic health centers and children’s hospitals can integrate core elements of education into workforce training for health care workers and community partners such as first responders, child welfare workers, teachers, and juvenile justice personnel.86,87Deborah L. Shropshire, MD, FAAP

  • Research Article
  • Cite Count Icon 10
  • 10.1542/neo.4-6-e157
Ethics at the Limit of Viability: A Premie’s Progress
  • Jun 1, 2003
  • NeoReviews
  • William Meadow + 1 more

After completing this article, readers should be able to: Progress in neonatology is generally portrayed as inexorable—doing better and better with smaller and smaller. For approximately the first 30 years of the specialty, this was true. A succession of manuscripts published between 1960 and 1990 bore witness to the success, with titles such as “1,500 g: How Small is Too Small?” that subsequently were followed by: 1,000 g:?, 800 g:?, and 500 g:?.By 1990, virtually all neonatal intensive care units (NICUs) had survival rates of 90% or greater for infants whose birthweights (BWs) were greater than 1,000 g. Consequently, for individual infants whose BWs were greater than 1 kg, parental refusal of intervention was precluded in the absence of other, nonBW-related circumstances. At the other end of a relatively narrow BW spectrum (approximately <450 g), survival was dismal. At a minimum, parental requests for nonresuscitation of infants who weighed less than this limit seemed supportable, under the broad rubric of futility. Thus, the ethical debate surrounding NICU care was played out along a birthweight dimension of roughly 1 lb.These epidemiologic truths were recognized by the early 1990s. However, much has changed in NICU care in the past decade. Exogenous surfactants are administered uniformly for respiratory distress. High-frequency oscillation and inhaled nitric oxide are widely available. Antenatal corticosteroids have become standard therapy for women in whom preterm delivery is threatened.In this brief article, we consider how these medical advances affected both the epidemiology and ethics of life and death for extremely low-birthweight (ELBW) infants in the NICU during the past 10 years. In parallel with Newton’s three laws for dealing with the motions of small bodies, we will develop three laws for dealing with the ethics of small bodies. However, by the end of the article, we are forced to recognize the uncertain application of Newtonian mechanics to the smallest of our bodies. Consequently, each law is modified by its own caveat.Three groups of infants die in the NICU. One group is born with congenital anomalies incompatible with life. Most of these babies receive comfort care for their entire short lives; few present ethical dilemmas. A second subset of doomed infants is born at term, but is extremely ill. These infants usually have some combination of pulmonary insult (meconium aspiration/persistent pulmonary hypertension) and hemodynamic collapse (septic shock). They receive “full support” for most of their NICU existence, and ethical controversies are rare.The third subset of doomed NICU infants is born preterm. As a group, preterm babies account for about 50% of all NICU deaths. Further restricting the BW/gestational age category to the “limits of viability” (broadly interpreted), infants born at less than 700 g comprise approximately 5% of all NICU admissions, but account for almost one third of all NICU deaths. Most NICU ethical controversy surrounds the lives and deaths of these tiny babies.Figure 1 displays the risk of dying as a function of BW for 1,142 infants whose BWs were less than 1,000 g when born at the University of Chicago over the past 10 years. At all times, smaller babies were less likely to survive than larger ones, which is expected. Moreover, the largest improvement in BW-specific mortality was seen for the smallest infants, who were at the greatest risk to die. Infants whose BWs were 800 to 1,000 g were likely to survive during the entire decade, and improvement was hardly possible. In contrast, infants whose BWs were 450 to 700 g were unlikely to survive in 1990, but much more likely to live by 2001.However, embedded in the figure is another phenomenon. The improvement in BW-specific mortality may be slowing or stopping. Figure 2 recasts the same data set, displaying survival for all 1,142 ELBW infants as a function of birth year. The curve appears to be flattening, or even flat, after 1997. Although this might be considered a statistical aberration, comparable observations were reported for a much larger cohort by Horbar and colleagues from the Vermont-Oxford network. Despite (or because of) the clinical advances of the past decade, success with this group of infants born at the threshold of viability appears to have reached a plateau. Time will tell whether this is a temporary pause or a more permanent barrier.Observations thus far have referred only to data obtained on the day of birth. However, time represents another ethically relevant dimension. Is there an accentuation or decay of BW-specific mortality with time? Do such changes make a difference?Figure 3 plots the day of death (DOD) for ELBW infants who died in the NICU at the University of Chicago between 1991 and 2001. The median DOD for the decade was 3 days. However, the median DOD has risen steadily since 1995 from 2 days to almost 10 days after birth.Why does it matter when doomed babies die? This question can be answered on two distinct levels, one of which might be considered to reflect justice on a personal level and the other reflecting a more distributive justice. From the personal perspective, the longer a baby lives before dying, the greater the potential for suffering by both the infant and the parents. In this context, our observations should be comforting. Although not as brief as in the past, dying still is not protracted for most doomed NICU babies. The tiniest doomed babies are unlikely to survive immediately after birth, receive what might be called a brief “trial of NICU therapy,” and succumb within days (as opposed to weeks or even months).The phenomenon of early death for NICU nonsurvivors has another, unexpected consequence (Fig. 4). The likelihood of survival to discharge as a function of an infant’s birthweight with the added dimension of time shows that by day of life (DOL) 4, overall survival for the entire group of ELBW infants was very high (>80%). Further, survival to discharge for this population of infants did not depend significantly on BW. Once an infant had survived to DOL 4, the likelihood of subsequent survival to discharge was greater than 50%, even if the BW was less than 600 g. Accordingly, it appears that the first NICU law—BW-specific mortality—becomes less ethically relevant with every passing day.These data also can be analyzed on the level of “distributive justice,” a term applied to the claim of society at large on the resources used by its members considered individually. Does NICU care for preterm infants cost too much or use scarce resources inefficiently? As opposed to what?If most doomed extremely preterm infants die in the first few days after birth, they do not use up many health care dollars. Moreover, if most extremely preterm survivors have a long NICU stay before they are discharged, NICU dollars are disproportionally diverted to survivors (which, we would argue, generally is good).Figure 5 presents the percentage of NICU bed-days devoted to nonsurviving infants at the University of Chicago for 1,142 ELBW infants admitted between 1991 to 2001. For every year, the percentage of bed-days was less than 10%. Even when the BW spectrum is restricted to infants whose BWs were less than 600 g (whose overall mortality was 74%), the percentage of bed-days occupied by nonsurvivors was only 13%.This represents the third important ethical implication to the phenomenon of early death for NICU nonsurvivors. NICU bed-days and NICU dollars are very precisely targeted to survivors independent of whether the likelihood of overall survival is high or low.As a final point, these data stand in sharp contrast to comparable analyses performed on patients admitted to an adult medical intensive care unit (MICU). At the University of Chicago, 29% of overall beds in the MICU were devoted to patients who would not survive to discharge. For adults who required mechanical ventilation, more than 50% of bed-days were devoted to nonsurvivors. Translated into economic terms, roughly 95 cents of every NICU dollar is spent on infants who will go home to their families compared with more than 50 cents of every adult ICU dollar spent on patients who will not leave the hospital alive.Moving from population-based inquiry to analysis of the courses of individual patients involves not only accurately diagnosing a particular syndrome (or accurately determining population statistics for a group of infants at a particular BW/gestational age). Instead, it involves trying to determine which individuals among a larger group that has a similar diagnosis (or BW/gestational age) are the most likely to die.Scores of illness severity have been created in an attempt to predict the likelihood of survival or nonsurvival for patients at the time of admission to an ICU. Each of these scores represents an algorithmic assessment of physiologic stability (eg, heart rate, blood pressure, base excess) based on the assumption that patients who have the most deranged physiology are least likely to survive. Generally, such scores work for large groups. However, the scores have proven less valuable for individual patients. Even at the highest end of APACHE, PRISM, or SNAP scores, the predictive power of nonsurvival rarely is greater than 50%.However, one dimension of ICU care is consistently omitted from these illness severity scores: time. ICU care usually lasts longer than a single day, and decisions (both medical and ethical) should be revisited as time passes and patient responses or nonresponses to therapeutic interventions are observed.Does the predictive power of algorithmic assessments of illness severity improve or worsen with time? One might hypothesize that as time passes, survivors and doomed patients should diverge along the dimension of illness severity. With this view, survivors’ illness severity scores should decrease as they become more physiologically stable, and nonsurvivors’ scores should increase as they become less stable (blood pressure falls, oxygen requirements increase, kidneys shut down, patients lapse into coma). Alternatively, one might hypothesize that many physiologic disturbances leading to NICU admission are at least transiently correctable. If this were true, illness severity scores for survivors and nonsurvivors might converge after NICU admission, leaving the ultimate fate of the infant less clear as time passes.Figure 6 presents the average Score for Neonatal Acute Physiology (SNAP) scores as a function of DOL for populations of intubated survivors and nonsurvivors cared for in our NICU. Two important points emerge. On DOL 1, SNAP distinguished the population of future survivors from nonsurvivors. SNAP values for nonsurvivors (24±8.7 [SD]) were significantly higher than values for survivors (13±6.1; P<.001). However, this difference diminished steadily over time. By DOL 10, there no longer was a significant difference between SNAP values for infants who would survive to be discharged and those who would subsequently die.Analyzing infants individually, SNAP scores of all survivors improved over time, with values lower on the day they were extubated (and consequently exited the study) than on the day of their admission. A more surprising finding was that SNAP scores for 85% of the nonsurvivors also improved over time, with final SNAP scores on the day they died being lower than scores on DOL 1. Moreover, only 9 of 45 nonsurvivors had a “U-shaped” course in which SNAP initially fell, then rose again prior to death.Despite its intuitive appeal, the hypothesis that survivors would improve, nonsurvivors would not, and doomed infants would become increasing apparent was not proven. It is true that most patients who die do so early and are sick their entire (short) lives. However, these findings suggest one of the most counterintuitive observations of NICU dynamics:Most NICU infants who die late are NOT sick their whole lives. Their prospects for survival become progressively less –not more –apparent with each passing day.Thus, illness severity scores are not helpful to ethicists. Perhaps this is due to physiologic algorithms being too “cold,” impersonal, and removed from the “feel” of the bedside to be the best vehicle for predicting life and death in the NICU. Perhaps experienced caretakers, calling on inchoate but nonetheless real bedside intuitions, can do better.Clinical intuitions have been shown to be predictive of outcomes for ICU patients of all ages. Most people who work in ICUs and people who have known patients there have experienced caretakers’ prognostications: “I think your loved one will live” or “Things look pretty bleak.” In the context of NICU infants, how accurate are these estimates at the time of admission and do they become more or less accurate over time? As before, we might hypothesize that as the infant’s response or nonresponse to NICU therapy becomes clear, the clinical course of survivors and doomed patients would diverge. If so, NICU patients would “declare” themselves ever more stridently over the course of their hospital stays.To test this hypothesis, we asked doctors and nurses caring for 254 ventilated infants in our NICU two questions on every day of mechanical ventilation: “Do you think this baby will die in the NICU or survive to discharge?” and “If you think the baby will survive, will there be none, mild, moderate, or severe permanent neurologic damage?”The dominant finding of this analysis is portrayed in Figure 7. A total of 192 of 254 infants (79%) ventilated NICU babies survived, and almost all surviving infants were predicted by all (or almost all) observers to survive on all (or almost all) days of mechanical ventilation. At least 90% of all NICU ventilation days for survivors were characterized by virtually unanimous prediction of survival. In contrast, 15% of survivors survived despite at least one caretaker predicting their death. Indeed, 4% of all survivors had at least one hospital day in which all caretakers predicted death.Prediction profiles for nonsurvivors split both along the dimension of time and the dimension of accuracy. Sixty percent of nonsurvivors in the study died before DOL 10. As a group, their prediction profiles were remarkably homogeneous—dismal and accurate. On every day, every observer predicted that the baby would die (Fig. 7B).In contrast to the homogeneity characterizing profiles of infants who died early, those who died later were a heterogeneous group. Approximately 75% of late-dying infants were predicted to live by many (if not all) observers on many (if not all) hospital days. Fifty percent of the infants suffered a fatal medical catastrophe with little advance warning (eg, necrotizing enterocolitis, pneumonia). The rapid and unexpected nature of their demise is emphasized by the observation that for many of these late-dying infants, not even 1 day of their hospital stay prior to the actual day of death was marked by 0% prediction of survival. Other late-dying infants had prediction profiles categorized by great uncertainty both across respondents and across days and even weeks. Several periods were characterized by “pessimism” (ie, low, even 0% predictions of survival), alternating with periods of “optimism” that were characterized at times by up to 100% prediction of survival (Fig. 7C). These nonsurvivors often lingered for many weeks prior to death.Although most nonsurvivors had at least some predictions of death before they died, so did some survivors (there were many more survivors than nonsurvivors). Consequently, although approximately one third of all the ventilated infants in the study had at least 1 day characterized by a prediction of death, almost 50% of these were wrong. Thus, almost 50% of the children predicted to die survived to be discharged. More stringent criteria for prediction of nonsurvival improved predictive power only slightly; 15% of ventilated patients had at least 1 day characterized by unanimous predictions of death, yet 25% of them survived.Perhaps even more depressing is the deterioration of positive predictive value (PPV) for intuitions of nonsurvival as a function of the day of life on which the predictions were obtained. During the first 10 days of life, a single day of unanimous intuitions of nonsurvival retained impressive predictive power, with 80% of patients who had at least 1 day of unanimous prediction of death actually dying. However, after DOL 10, the PPV of 1 day of unanimous prediction of death decreased sharply, and beyond DOL 21, the PPV of 1 day of unanimous intuitions of nonsurvival decreased to less than 50%.Perhaps our caretakers are sensing something, but are not sufficiently sensitive about what they are sensing. Perhaps our respondents are predicting “die” when, in fact, they mean “bad” that encompasses some combination of “die or if they survive, they will not be close to neurologically normal.” That might be a more relevant ethical outcome for many parents and caretakers; informed consent should inform the parents not only about life or death, but offer some sense of the quality of that life.Although caretaker intuitions for ventilated NICU infants are so imperfect as predictors of a baby’s death as to be virtually useless, changing the outcome variable only slightly may make a substantial difference. As an example, the question may be asked of how well these same intuitions predict either death or significant neurologic morbidity after discharge.We have obtained follow-up data at 1 year of corrected age for 120 ELBW infants who were admitted to our NICU (760 g BW and 26 weeks’ gestation at birth). Only 44 (37%) were alive and neurologically normal at 1 year corrected age, which is comparable to other published data. We ask the most important question we can envision from the perspective of personal ethics: How good were we at predicting long-term outcome (good or bad) for individual patients within this overall group while we were still caring for them in the NICU? For any child who was sufficiently sick to require mechanical ventilation, but for whom no caretaker ever predicted “die before discharge,” the likelihood of surviving and having normal neurologic examination results at 1 year was 70%. Consistently favorable intuitions doubled the likelihood that the babies would be normal. In contrast, if even one infant day was characterized by unanimous predictions of nonsurvival, the likelihood of being alive and normal at 1 year was only 4%.Recent epidemiologic observations suggest the need to revise our three laws of NICU ethics: Epidemiology appears to have resolved two issues (more or less). First, distributive justice concerns in the NICU are a canard. Any people who thought they were important for any area of medicine should close down adult ICUs. Second, if accurate life-or-death prediction for individual infants is the goal, we have yet to find the right dousing stick, and we have used up many of the more obvious ones. We may have found an excellent dousing stick for “life without significant neurologic impairment,” but only time will tell.There also are several unresolved issues that may never be resolved. For example, how dismal must the likelihood of “survival without severe neurologic morbidity” be to allow parents to elect not to provide or continue life-prolonging intervention? No matter how large the data-set on which inferences are based, inevitably there is some statistical uncertainty about the point estimate determined for the outcome of any predefined group of infants. More importantly, though, is how low a number should “count” in this discussion. At the extreme, no infant ever has been reported to survive at 19 weeks’ gestation, which places this time point beyond the penumbra of parental discretion for now. However, there are scattered reports of survival at 350 to 400 g and 21 to 22 weeks’ gestation, and by 400 to 450 g and 23 weeks’ survival, the number is countable (although substantially less than 5%). This “penumbra of ethical discretion” issue is literally a “baby and bath water” problem. Some (hopefully few) potentially “good” babies will be “thrown out” in return for allowing parents to forestall the possibility that most (but not all) doomed/damaged infants will be required to suffer extensively for no ultimate purpose.Another unanswered question is: What type of morbidity is determined as sufficiently worthless? Adolescent NICU graduates who clearly are handicapped by most “normal” standards self-report a score on their quality of life that is significantly higher than the self-reported quality of life for “normal,” nonhandicapped teens. Certainly, many NICU graduates are so impaired that they cannot self-report anything. On the other hand, perhaps cognitive dissonance is real and these children (most kids? these families? most families?) are much more flexible than we who are not required to adapt to hardship can anticipate. That would be very good from the child’s point of view, but very difficult for an ethicist to impose on a parent who wanted to incorporate apparently dismal quality of life into the benefit-burden calculus of NICU intervention.Ethicists (and judges) always have the easy part because they simply create internally consistent rules. Physicians and parents have it harder because the real world is always messier.

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  • Research Article
  • Cite Count Icon 3
  • 10.3390/children10091477
Peripartum Traumas and Mental Health Outcomes in a Low-Income Sample of NICU Mothers: A Call for Family-Centered, Trauma-Informed Care.
  • Aug 30, 2023
  • Children
  • Allison Williams + 6 more

Postpartum depression (PPD), postpartum anxiety (PPA), and post-traumatic stress disorder (PTSD) among birthing people have increased substantially, contributing to adverse maternal/infant dyad outcomes, with a high prevalence in the neonatal intensive care unit (NICU). Despite calls for trauma-informed care in the NICU and high rates of post-traumatic stress, little research has examined the rates of or the relationships between peripartum mood and adverse child experiences (ACEs) in NICU mothers or evaluated which peripartum traumas are most distressing. This study employed structural equation modeling (SEM) to explore whether peripartum-related traumas and NICU-related stressors mediated the associations between ACEs and mental health outcomes in 119 lower-income, racially diverse mothers in a Level IV NICU. Mental health concerns were prevalent and highly comorbid, including 51.3% PPA, 34.5% PPD, 39.5% post-traumatic stress, and 37% with ≥4 ACEs. The majority (53.8%) of mothers endorsed multiple peripartum traumas; NICU admission was the most common trauma (61%), followed by birth (19%), pregnancy (9%), and a medical event in the NICU (9%). Our SEMs had good fit and demonstrated that ACEs predicted peripartum distress. Trauma-informed care efforts should employ transdiagnostic approaches and recognize that women commonly present to the NICU with childhood trauma history and cumulative peripartum traumas.

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