Equity, inclusion and cultural humility: contemporizing the neonatal intensive care unit family-centered care model.

Existing NICU family centered care models lack the key elements of equity, inclusion and cultural humility. These models were conceived to support families during the stressful life event of an infant's NICU admission. Their development, however, occurred prior to recognition of the medical field's systematic shortcomings in providing equitable care and their impact on outcome disparities for marginalized communities; thus, they do not include cultural or equitable healthcare considerations. Given the significant neonatal care inequities for marginalized groups, incorporating the experience of these patients in a targeted manner into family centered care frameworks is of critical importance to ensure culturally humble and thus more just and equitable treatment. Here, we review past approaches to NICU family centered care and propose a novel, updated framework which integrates culturally humble care into the NICU family centered care framework.

Words matter: exploring communication between parents and neonatologists.

OBJECTIVE: To evaluate how neonatologists and NICU parents perceive communication in the NICU. STUDY DESIGN: A mixed-methods approach using an online survey and three focus groups with NICU parents and neonatologists, utilizing videos of simulated conversations between a neonatologist and mother. RESULTS: A total of 72 participants responded to the online survey. Parents ranked the invasiveness of common NICU clinical procedures differently than the neonatologist standard but assessed the quality of the simulated conversation similarly. A total of 13 parents and 6 physicians participated in the focus groups. Major themes from both neonatologist and parent focus groups were the impact of making a connection with the parents, the importance of making decisions yet not making assumptions based on the divergent use of language by neonatologists and parents, and providing hope. CONCLUSIONS: Parents and neonatologists differ in their perception of key aspects of NICU language use and communication but also agree on many aspects.

Providing Support for Neonatal Intensive Care Unit Health Care Professionals: A Bereavement Debriefing Program.

OBJECTIVE: The aim of this study is to evaluate formal bereavement debriefing sessions after infant death on neonatal intensive care unit (NICU) staff. STUDY DESIGN: Prospective mixed methods study. Pre- and postbereavement debriefing intervention surveys were sent to clinical staff. Evaluation surveys were distributed to participants after each debriefing session. Notes on themes were taken during each session. RESULTS: More staff attended sessions (p < 0.0001) and attended more sessions (p < 0.0001) during the postdebriefing intervention epoch compared with the predebriefing epoch. Stress levels associated with the death of a patient whose family the care provider have developed a close relationship with decreased (p = 0.0123). An increased number of debriefing session participants was associated with infant age at the time of death (p = 0.03). Themes were (1) family and provider relationships, (2) evaluation of the death, (3) team cohesion, (4) caring for one another, and (5) emotional impact. CONCLUSION: Bereavement debriefings for NICU staff reduced the stress of caring for dying infants and contributed to staff well-being. KEY POINTS: · Providing end-of-life care in NICU is challenging.. · Debriefings assist staff in coping with grief.. · Staff well-being impacts patient care..

Improving the Assessment of Neonatal Abstinence Syndrome (NAS).

Neonatal Abstinence Syndrome (NAS) is a public health problem of epidemic proportions. The Finnegan Neonatal Abstinence Scoring System (FNASS) is the tool most widely used to evaluate NAS. However, it is limited by its lack of interrater reliability and standardized approach. Surveys to evaluate the FNASS were distributed to nurses at the Women and Infants Hospital in Providence, RI, USA. Infants (n = 78) treated for NAS and born to methadone-maintained mothers were examined to compare items administered from the FNASS and the NICU Network Neurobehavioral Scale (NNNS). All nurses reported that the FNASS was somewhat to very subjective. More than half reported that it was somewhat to not accurate and a new scoring method is needed to accurately diagnose NAS. Correlations between FNASS items and NNNS items showed 9 of 32 (28.1%) correlations were strong (rs > 0.5), 5 of 32 (15.6%) were moderate (0.3 < rs < 0.5), and 10 of 32 (31.3%) were weak (0.1 < rs < 0.3). Principal component factor analysis (PCA) of the NNNS explained more variance (35.1%) than PCA of NNNS and FNASS items combined (33.1%). The nursing survey supported the need for developing a more objective exam to assess NAS. NNNS exam items may be used to improve the evaluation of NAS.

Maternal Immigrant Status and Readiness to Transition to Home From the NICU.

BACKGROUND AND OBJECTIVES: Evaluate effects of immigrant status on perceptions of discharge readiness in mothers of preterm infants <37 weeks' gestation and identify the impact of primary language and years in the United States. METHODS: Immigrant (n = 176) and native (n = 556) mothers of preterm infants cared for in the NICU for >5 days between 2012 and 2015 completed the Fragile Infant Parental Readiness Evaluation (FIPRE), a NICU-discharge readiness questionnaire. Group comparisons were made on the basis of immigrant status. Regression models examined effects of immigrant status, primary language, and years in the United States on discharge readiness. RESULTS: Immigrant mothers were more likely to be older, gravida >1, multiracial or people of color, and non-English speaking; have less than a high school education; and receive Medicaid but less likely to have child protective services involvement, substance abuse, and mental health disorder (MHD). Whereas rates of non-English primary language, low education, and Medicaid decreased, rates of MHDs increased with years in the United States. At NICU discharge, immigrant mothers had poorer perceptions of infant well-being, maternal well-being, maternal comfort, and time impact. In adjusted analyses, immigrant status, non-English primary language, and MHD predicted unfavorable scores. Among immigrant mothers, increased years in the United States and MHD predicted unfavorable scores. CONCLUSIONS: Although findings suggest acculturation with increased years in the United States, immigrant mothers perceived less discharge readiness in multiple domains, highlighting the need for culturally competent care and discharge services specifically tailored to help this vulnerable population.

Maternal Mental Health and Neonatal Intensive Care Unit Discharge Readiness in Mothers of Preterm Infants.

OBJECTIVE: To evaluate associations between maternal mental health disorders (MHDs) and discharge readiness for mothers of infants born preterm (<37 weeks). We hypothesized that mothers with a history of MHDs would report decreased perceptions of neonatal intensive care unit (NICU) discharge readiness compared with mothers without a history. STUDY DESIGN: Mothers of infants born preterm in the NICU >5 days between 2012 and 2015 and participating in a transition home program completed a discharge readiness questionnaire measuring perceptions of staff support, infant well-being (medical stability), maternal well-being (emotional readiness/competency), and maternal comfort (worry about infant). Greater scores are more optimal (range 0-100). Social workers obtained a history of MHDs. Group comparisons and regression analyses were run to predict decreased scores and maternal discharge readiness. RESULTS: A total of 37% (315/850) of mothers reported a MHD. They were more likely to be white (64% vs 55% P = .05), single (64% vs 45% P ≤ .001), on Medicaid (61% vs 50% P = .002), and less likely to be non-English speaking (10% vs 22%, P ≤ .001). Mothers with MHD perceived less NICU support (92 ± 13 vs 94 ± 12, P = .005), less emotional readiness for discharge (78 ± 17 vs 81 ± 14, P = .04), and lower family cohesion (81 ± 24 vs 86 ± 19, P = .02) compared with mothers without MHD. Regression modeling (OR; CI) indicated that maternal history of MHDs predicted mother's decreased perception of infant well-being (1.56; 1.05-2.33) and her own well-being (1.99; 1.45-2.8) at discharge. CONCLUSION: One-third of mothers reported a history of MHDs. This vulnerable group perceive themselves as less ready for discharge home with their infant, indicating an unmet need for provision of enhanced transition services.

Impact of a Transition Home Program on Rehospitalization Rates of Preterm Infants.

OBJECTIVES: To evaluate the effects of a transition home program on 90-day rehospitalization rates of preterm (PT) infants born at <37 weeks gestational age implemented over 3 years for infants with Medicaid and private insurance, and to identify the impact of social/environmental and medical risk factors on rehospitalization. STUDY DESIGN: In this prospective cohort study of 954 early, moderate, and late PT infants, all families received comprehensive transition home services provided by social workers and family resource specialists (trained peers) working with the medical team. Rehospitalization data were obtained from a statewide database and parent reports. Group comparisons were made by insurance type. Regression models were run to identify factors associated with rehospitalization and duration of rehospitalization. RESULTS: In bivariable analyses, Medicaid was associated with more infants hospitalized, more than 1 hospitalization, and more days of hospitalization. Early PT infants had more rehospitalizations by 90 days than moderate (P = .05) or late PT infants (P = .01). In regression modeling, year 3 of the transition home program vs year 1 was associated with a lower risk for rehospitalization by 90 days (OR, 0.57; 95% CI, 0.36-0.93; P = .03). Medicaid (P = .04), non-English-speaking (P = .02), multiple pregnancies (P = .05), and bronchopulmonary dysplasia (P = .001) were associated with increased risk. Both bronchopulmonary dysplasia and Medicaid were associated with increased days of rehospitalization in adjusted analyses. The major cause of rehospitalization was respiratory illness (61%). CONCLUSIONS: Transition home prevention strategies must be directed at both social/environmental and medical risk factors to decrease the risk of rehospitalization.

Medical morbidities and DNA methylation of NR3C1 in preterm infants.

BACKGROUND: Although there are no accepted "normal" levels of circulating cortisol in preterm infants, critically ill preterm infants show lower cortisol levels than healthy preterm infants. The regulation of cortisol reactivity by epigenetic changes in glucocorticoid receptor gene (NR3C1) expression has been demonstrated. This study aims to examine the relationship between medical morbidities in preterm infants and DNA methylation of NR3C1. METHODS: Pyrosequencing was used to determine DNA methylation in CpG sites 1-4 of promoter region 1F of NR3C1. Cluster analysis placed 67 preterm infants born <1,500 g into groups based on medical morbidities. The DNA methylation pattern was compared across groups. RESULTS: Cluster analysis identified a high medical risk cluster and a low medical risk cluster. A Mann-Whitney U-test showed lower methylation at CpG1 for infants in the high-risk group (M = 0.336, SE = 0.084) than infants in the low-risk group (M = 0.617, SE = 0.109, P = 0.032). The false discovery rate was low (q = 0.025). Cohen's D effect size was moderate (0.525). CONCLUSION: Decreased DNA methylation of CpG1 of NR3C1 in high-risk infants may allow for increased binding of transcription factors involved in the stress response, repair and regulation of NR3C1. This may ensure healthy growth in high-risk preterm infants over increasing cortisol levels.

Social Emotional Factors Increase Risk of Postpartum Depression in Mothers of Preterm Infants.

OBJECTIVE: To examine the association of maternal mental health, perceptions of readiness at neonatal intensive care unit (NICU) discharge, and social risk factors with depressive symptoms 1 month postdischarge in mothers of early (<32 weeks), moderate (32-33 weeks), and late (34-36 weeks) preterm infants. A secondary objective was to compare depressive symptoms among mothers in all preterm groups. STUDY DESIGN: Mothers (n = 734) of preterm infants cared for >5 days in the NICU and participating in a Transition Home Program completed the Fragile Infant Parent Readiness Evaluation prior to discharge for perceptions of NICU staff support, infant well-being, maternal well-being (emotional readiness/competency), and maternal comfort (worry about infant). Mental health history and social risk factors were obtained. At 1 month postdischarge the Edinburgh Postnatal Depression Scale was administered. Group comparisons and logistic regression analyses were run to predict possible depression (Edinburgh Postnatal Depression Scale ≥10). RESULTS: Mothers of early, moderate, and late preterm infants reported similar rates of possible depression (20%, 22%, and 18%, respectively) 1 month after NICU discharge. History of mental health disorder, decreased perception of maternal well-being, decreased maternal comfort regarding infant, and decreased perception of family cohesion were associated with possible depression at 1 month postdischarge. CONCLUSIONS: Mothers with a previous mental health disorder and experiencing negative perceptions of self and infant at NICU discharge were at increased risk for depressive symptomatology 1 month postdischarge regardless of infant gestational age. Comprehensive mental health assessment prior to discharge is essential to identify women at risk and provide appropriate referral.

18-Month Follow-Up of Infants Cared for in a Single-Family Room Neonatal Intensive Care Unit.

OBJECTIVES: To determine whether the single-family room (SFR)-neonatal intensive care unit (NICU) is associated with improved 18-month neurodevelopmental outcome, especially in infants of mothers with high maternal involvement. STUDY DESIGN: An 18-month follow-up was undertaken that compared infants born <30 weeks gestational age; 123 from a SFR-NICU vs 93 from an open-bay NICU. Infants were divided into high vs low maternal involvement based on days/week of kangaroo care, breast/bottle feeding, and maternal care. Infants with high vs low maternal involvement in the SFR and open-bay NICUs were compared on the Bayley Cognitive, Language, and Motor scores and Pervasive Developmental Disorders autism screen. RESULTS: There were more mothers in the high maternal involvement SFR than in the high maternal involvement open-bay group (P = .002). Infants with high maternal involvement in both NICUs had greater Cognitive (P = .029) and Language (P < .000) scores than infants with low maternal involvement. Effect sizes within NICU were moderate to large in the SFR-NICU for Language scores and moderate for the Language composite in the open-bay NICU. The number of days of maternal involvement was greater in the SFR than open-bay NICU (P < .000), and length of stay was shorter in the high maternal involvement SFR than high maternal involvement open-bay NICU (P = .024). Kangaroo and maternal care predicted Cognitive (kangaroo, P = .003) and Language scores (P = .015, P = .032, respectively). Infants with ≥1 symptom of autism were more likely to be in the open-bay low maternal involvement group vs the SFR high maternal involvement group (OR = 4.91, 95% CI = 2.2-11.1). CONCLUSIONS: High maternal involvement is associated with improved 18-month neurodevelopmental outcome, especially in infants cared for in a SFR-NICU.

The Contributions of Maternal Sensitivity and Maternal Depressive Symptoms to Epigenetic Processes and Neuroendocrine Functioning.

This study tested whether maternal responsiveness may buffer the child to the effects of maternal depressive symptoms on DNA methylation of NR3C1, 11ß-HSD2, and neuroendocrine functioning. DNA was derived from buccal epithelial cells and prestress cortisol was obtained from the saliva of 128 infants. Mothers with depressive symptoms who were more responsive and who engaged in more appropriate touch during face-to-face play had infants with less DNA methylation of NR3C1 and 11ß-HSD2 compared to mothers with depressive symptoms who were also insensitive. The combination of exposure to maternal depressive symptoms and maternal sensitivity was related to the highest prestress cortisol levels, whereas exposure to maternal depressive symptoms and maternal insensitivity was related to the lowest prestress cortisol levels.

Neurobehavior related to epigenetic differences in preterm infants.

UNLABELLED: Preterm birth is associated with medical problems affecting the neuroendocrine system, altering cortisol levels resulting in negative effects on newborn neurobehavior. Newborn neurobehavior is regulated by DNA methylation of NR3C1 and HSD11B2. AIM: Determine if methylation of HSD11B2 and NR3C1 is associated with neurobehavioral profiles in preterm infants. PATIENTS & METHODS: Neurobehavior was measured before discharge from the hospital in 67 preterm infants. Cheek swabs were collected for DNA extraction. RESULTS: Infants with the high-risk neurobehavioral profile showed more methylation than infants with the low-risk neurobehavioral profile at CpG3 for NR3C1 and less methylation of CpG3 for HSD11B2. Infants with these profiles were more likely to have increased methylation of NR3C1 and decreased methylation of HSD11B2 at these CpG sites. CONCLUSION: Preterm birth is associated with epigenetic differences in genes that regulate cortisol levels related to high-risk neurobehavioral profiles.

Single-family room care and neurobehavioral and medical outcomes in preterm infants.

OBJECTIVE: To determine whether a single-family room (SFR) NICU, including factors associated with the change to a SFR NICU, is associated with improved medical and neurobehavioral outcomes. METHODS: Longitudinal, prospective, quasi-experimental cohort study conducted between 2008 and 2012 comparing medical and neurobehavioral outcomes at discharge in infants born <1500 g. Participants included 151 infants in an open-bay NICU and 252 infants after transition to a SFR NICU. Structural equation modeling was used to determine the role of mediators of relations between type of NICU and medical and neurobehavioral outcomes. RESULTS: Statistically significant results (all Ps ≤.05) showed that infants in the SFR NICU weighed more at discharge, had a greater rate of weight gain, required fewer medical procedures, had a lower gestational age at full enteral feed and less sepsis, showed better attention, less physiologic stress, less hypertonicity, less lethargy, and less pain. NICU differences in weight at discharge, and rate of weight gain were mediated by increased developmental support; differences in number of medical procedures were mediated by increased maternal involvement. NICU differences in attention were mediated by increased developmental support. Differences in stress and pain were mediated by maternal involvement. Nurses reported a more positive work environment and attitudes in the SFR NICU. CONCLUSIONS: The SFR is associated with improved neurobehavioral and medical outcomes. These improvements are related to increased developmental support and maternal involvement.

Major depressive disorder during pregnancy and emotional attachment to the fetus.

While there is good evidence that depression negatively impacts mother-to-infant emotional attachment in the postpartum period, the impact of depression in pregnancy on maternal emotions and cognitions about the fetus (often termed "maternal-fetal attachment" or MFA) is unclear. This study compared MFA scores from women meeting clinical criteria for Major Depressive Disorder (MDD) with scores from nondepressed women. Participants were 161 women enrolled at 23-36 weeks gestation, of whom 65 met criteria for MDD via the Structured Clinical Interview for the DSM-IV-TR during their second and/or third trimesters. Cranley's Maternal Fetal Attachment Scale was administered at 26 and 36 weeks gestation. Generalized linear modeling was used to assess the effect of MDD, anxiety, and antidepressant use on MFA. MDD was negatively related to MFA (LR) = 4.58, df = 1, p < 0.04). Neither anxiety (LR = 0.22, p < 0.64), nor antidepressant use (LR = 0.20, df = 1, p < 0.66) were related to MFA. Depression severity was negatively related to MFAS scores (B = -0.005, SE = .002, p < 0.0012) when including the interaction of MDD group and HRSD scores in the model. This study is the first to demonstrate that clinically defined MDD during pregnancy negatively impacts MFA, suggesting that the basis for poor mother-to-infant attachment in postpartum MDD may have roots in pregnancy.

Infant neurobehavioral development.

The trend toward single-room neonatal intensive care units (NICUs) is increasing; however scientific evidence is, at this point, mostly anecdotal. This is a critical time to assess the impact of the single-room NICU on improving medical and neurobehavioral outcomes of the preterm infant. We have developed a theoretical model that may be useful in studying how the change from an open-bay NICU to a single-room NICU could affect infant medical and neurobehavioral outcome. The model identifies mediating factors that are likely to accompany the change to a single-room NICU. These mediating factors include family centered care, developmental care, parenting and family factors, staff behavior and attitudes, and medical practices. Medical outcomes that plan to be measured are sepsis, length of stay, gestational age at discharge, weight gain, illness severity, gestational age at enteral feeding, and necrotizing enterocolitis (NEC). Neurobehavioral outcomes include the NICU Network Neurobehavioral Scale (NNNS) scores, sleep state organization and sleep physiology, infant mother feeding interaction scores, and pain scores. Preliminary findings on the sample of 150 patients in the open-bay NICU showed a "baseline" of effects of family centered care, developmental care, parent satisfaction, maternal depression, and parenting stress on the neurobehavioral outcomes of the newborn. The single-room NICU has the potential to improve the neurobehavioral status of the infant at discharge. Neurobehavioral assessment can assist with early detection and therefore preventative intervention to maximize developmental outcome. We also present an epigenetic model of the potential effects of maternal care on improving infant neurobehavioral status.

The effects of perinatal morbidity and environmental factors on health status of preterm children at age 12.

Children born prematurely have later morbidity, yet little is known about their health in adolescence. This study examined multiple dimensions of health at age 12 and the predictors of biological, behavioral, social, and physical environmental factors. Analysis of variance and logistic regression models were tested. Perinatal morbidity predicted health at age 12. Preterm status increases the risk of later alterations in health. Bronchopulmonary dysplasia, necrotizing enterocolitis, intraventricular hemorrhage, small-for-gestational age, parental perception of child health, and parental psychological distress affect later health. Prematurity and perinatal morbidity continue to impact child health 12 years after birth.

Developmental origins theory from prematurity to adult disease.

Developmental Origins Theory has received little coverage in the nursing literature, even though it has received much attention in other sciences. The theory proposes that prenatal stress provokes adaptive changes in endocrine and metabolic processes that become permanently programmed and impact later adult health. This paper reviews the theory and describes the primary neuroendocrine mechanism of hypothalamic-pituitary-adrenal axis function. Supporting research evidence in preterm infant and adult samples is presented. Through knowledge of the theory and the long-term sequelae for preterm infants, nurses will have a different theoretical perspective and growing evidence to consider in their care for pregnant women and infants.

Growth trajectories of preterm infants: birth to 12 years.

INTRODUCTION: Birth weight often is used to predict how preterm infants will grow, but scant attention has been paid to the effect of neonatal morbidities on growth trajectories. We investigated birth weight and neonatal morbidity in preterm infants' growth to age 12 years. METHOD: A five-group, prospective, longitudinal study was conducted with 194 infants: 46 full term; 29 healthy preterm without morbidity; 56 preterm with medical illness (MPT); 34 preterm with neurologic illness; and 29 preterm small for gestational age (SGA). Height, weight, and body mass index were measured at six ages. RESULTS: The full-term group had greater height than the preterm groups to age 8 years, when healthy preterm and MPT groups caught up. Only the SGA group had smaller height at age 12 years. The MPT, preterm with neurologic illness, and SGA groups had lower weight through age 12 years. Body mass index was appropriate for preterm groups by age 4 years. Across time, neonatal morbidity had a significant effect on height and weight trajectories. Birth weight was significant for weight trajectories only. DISCUSSION: With variation in growth trajectories, details of neonatal morbidity in health history interviews will inform child health assessments.

A decade comparison of preterm motor performance at age 4.

This was a prospective longitudinal study of two cohorts comprised of one full term and three premature infant groups born 10 years apart. Birth cohort, perinatal morbidity, and birth weight effects were investigated at age 4. Cohort 1 (1985-1989) had longer gestation, higher birth weight, and better Apgar scores than Cohort 2 (1996-1999), which had more intraventricular hemorrhage and bronchopulmonary dysplasia. Cohort and perinatal morbidity group, but not birth weight, predicted motor scores. Preterm Cohort 2 children had better oral motor, fine motor, and total motor scores, but lower visual motor integration scores than Cohort 1. Motor problems continue to affect preterm children at age 4, in particular those who experience perinatal morbidity, despite a decade of neonatal intensive care advancements.